› Forums › General Melanoma Community › Husband started new treatment yesterday, Tafinlar (dabrafenib) and Mekinist (trametinib) combo
- This topic has 87 replies, 13 voices, and was last updated 7 years, 10 months ago by
alyssa1b.
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- July 26, 2013 at 9:15 am
Hello all, I am fairly new to the site. I have gained valuable information from all of you so thank you for taking the time to share your stories with others. My husband, Rudy, has been on Zelboraf since mid March 2013, after being diagnosed with Stage 4, with mets in his liver, the previous month. His tumors have shrunk dramatically, so we are very happy with the results. The only problem he had was the with the severity of the side effects, which were so debilitating that they reduced his dosage to 3 pills x a day and an every other week schedule.
Hello all, I am fairly new to the site. I have gained valuable information from all of you so thank you for taking the time to share your stories with others. My husband, Rudy, has been on Zelboraf since mid March 2013, after being diagnosed with Stage 4, with mets in his liver, the previous month. His tumors have shrunk dramatically, so we are very happy with the results. The only problem he had was the with the severity of the side effects, which were so debilitating that they reduced his dosage to 3 pills x a day and an every other week schedule. His last visit to the oncologist a few days ago revealed that he was still responding positively. Despite the great results we opted for the new treatment because his oncologist advised that the side effects are less severe, and the results better, so this is our hope. I was wondering if any of you are on the combo and if so how are you doing?
Thanks for reading and I will keep you posted on my husbands progress! I am praying for all of you who are fighting this dreaded beast, you are true warriors, may the Lord be your strength through it all! God Bless you and yours.
Sincerely,
Gina (wife to Rudy)
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- July 26, 2013 at 12:47 pm
Great news that your husband gets to try this combo! I spoke with my husbands oncologist yesterday and was told that the combo was still not approved and it was not possible to get both. Did you have difficulties with this? Has anyone else been prescribed the combo?
Best of luck!
Donna
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- July 26, 2013 at 12:47 pm
Great news that your husband gets to try this combo! I spoke with my husbands oncologist yesterday and was told that the combo was still not approved and it was not possible to get both. Did you have difficulties with this? Has anyone else been prescribed the combo?
Best of luck!
Donna
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- July 26, 2013 at 12:47 pm
Great news that your husband gets to try this combo! I spoke with my husbands oncologist yesterday and was told that the combo was still not approved and it was not possible to get both. Did you have difficulties with this? Has anyone else been prescribed the combo?
Best of luck!
Donna
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- July 26, 2013 at 1:25 pm
Hi, Gina-
I am sorry that you have had to join our club, but let me say, "Welcome!".
I think it's a great idea to switch Rudy from Zelboraf to Tafinlar + Mekinist. The BRAF + MEK combo is supposed to work better in more people and with fewer side effects than does the BRAF inhibitor alone. Not many of us have had this combo because it is not FDA approved. Tafinlar and Mekinist are FDA approved as single agents, but not the combination so few insurance companies will pay for the combo. Is Rudy participating in a clinical trial of the combo or is your insurance company paying for it? In any event, I'm delighted that he is getting the combo. Please do keep us posted about his progress– you are Rudy are blazing a trail here for the rest of us.
As you are probably aware, when the BRAF inhibitors work they work quickly and well. However, melanoma does tend to become resistant to them eventually. I hope that you are discussing future treatment options with your oncologist. Some of the immune-mediated treatments like Yervoy and anti-PD1 seem to last longer, although they do take some months to exert their effect. A current clinical trial combining Yervoy and anti-PD1 shows especially promising results, although it's too early to know for sure yet.
It sounds like you and Rudy are doing all the right things. Keep up the good work!
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- July 26, 2013 at 1:25 pm
Hi, Gina-
I am sorry that you have had to join our club, but let me say, "Welcome!".
I think it's a great idea to switch Rudy from Zelboraf to Tafinlar + Mekinist. The BRAF + MEK combo is supposed to work better in more people and with fewer side effects than does the BRAF inhibitor alone. Not many of us have had this combo because it is not FDA approved. Tafinlar and Mekinist are FDA approved as single agents, but not the combination so few insurance companies will pay for the combo. Is Rudy participating in a clinical trial of the combo or is your insurance company paying for it? In any event, I'm delighted that he is getting the combo. Please do keep us posted about his progress– you are Rudy are blazing a trail here for the rest of us.
As you are probably aware, when the BRAF inhibitors work they work quickly and well. However, melanoma does tend to become resistant to them eventually. I hope that you are discussing future treatment options with your oncologist. Some of the immune-mediated treatments like Yervoy and anti-PD1 seem to last longer, although they do take some months to exert their effect. A current clinical trial combining Yervoy and anti-PD1 shows especially promising results, although it's too early to know for sure yet.
It sounds like you and Rudy are doing all the right things. Keep up the good work!
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- July 26, 2013 at 1:25 pm
Hi, Gina-
I am sorry that you have had to join our club, but let me say, "Welcome!".
I think it's a great idea to switch Rudy from Zelboraf to Tafinlar + Mekinist. The BRAF + MEK combo is supposed to work better in more people and with fewer side effects than does the BRAF inhibitor alone. Not many of us have had this combo because it is not FDA approved. Tafinlar and Mekinist are FDA approved as single agents, but not the combination so few insurance companies will pay for the combo. Is Rudy participating in a clinical trial of the combo or is your insurance company paying for it? In any event, I'm delighted that he is getting the combo. Please do keep us posted about his progress– you are Rudy are blazing a trail here for the rest of us.
As you are probably aware, when the BRAF inhibitors work they work quickly and well. However, melanoma does tend to become resistant to them eventually. I hope that you are discussing future treatment options with your oncologist. Some of the immune-mediated treatments like Yervoy and anti-PD1 seem to last longer, although they do take some months to exert their effect. A current clinical trial combining Yervoy and anti-PD1 shows especially promising results, although it's too early to know for sure yet.
It sounds like you and Rudy are doing all the right things. Keep up the good work!
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- July 26, 2013 at 11:18 pm
I am sorry if I offended you. I did not mean to imply that I am a member of the "club" of melanoma patients. Anyone who checks my profile can see that.
But I am a member of the club whose lives have been turned upside down by this vile disease. I am a member of the club of primary caregivers who sweated and fretted and researched and cheered and cried and shared a foxhole with our melanoma-stricken loved ones. And I am a member of the club who comes to this forum to learn and to share what we have learned and to support each other in any way we can during this difficult time.
I do not believe that caregivers have it harder than patients; we don't. But we are members of "the club".
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- July 27, 2013 at 2:13 am
POW,
Thank you for your well researched reponses.
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- July 27, 2013 at 2:13 am
POW,
Thank you for your well researched reponses.
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- July 27, 2013 at 2:13 am
POW,
Thank you for your well researched reponses.
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- July 27, 2013 at 9:20 am
Hello Donna. It is true that the FDA has not approved the combo, however, my husband had a scheduled visit with his oncologist on June 4th, which was the week after the drugs were approved, and he prescribed both drugs and said that we might have difficulty getting the meds immediately and that I should contact the drug manufacturer to find out when they would be available. He didn't mention that they hadn't been approved as a combo, I learned that from this site and the article that someone posted about the FDA approval. As such, after reading the article I was anticipating some sort of difficulty on coverage and a denial of at least one of the meds but we got lucky and both were approved. Unfortunately, my husband was not covered under any medical insurance plan at the time of his diagnosis due to a job change, and he was a month away from being eligible for medical benefits with his new employer when we got the devastating news (and this is after being insured for most of his life, ironically.) In any event, we are covered now, thank God, under Medicare/Cal Optima due to his being immediately approved for Social Security Disability Insurance benefits.
Again, we were lucky that his insurance approved them both, however, I recommend that anyone who is considering the combo to get the prescriptions and give it a shot! It's my understanding that an application has already been submitted to the FDA for approval as a combo and that it should be approved soon. We are very happy with the care that my husband is receiving from his oncologist, Dr. John Fruehauf, a melanoma specialist from the Chao Family Comprehensive Cancer Center at University of California – Irvine. It is one of the best and the closest cancer centers in our area of Southern California.
Blessings to you and your husband!
Gina (wife to Rudy)
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- July 27, 2013 at 9:52 am
Hi POW, thank you! Please see my response to the post above with respect to coverage. You are right, I am frightfully aware of the resistance tendency and we have a plan in place in preparation of that probability. My husband is being treated at a cancer center where there are many ongoing clinical trials for melanoma, many of those trials are being done by his oncologist, Dr. John Fruehauf. Please see my reply above for Dr. Fruehauf's information.
I applaud the work that you do here on this site for the patients and their loved ones whom are also the caregivers! I have been a nightly visitor to the site and have been so impressed with the love, support, information and good advice that you have so faithfully given and continue to give every day. You are, in my opinion, doing Gods work and I am very grateful. I have learned a lot from your posts and that has been a blessing to my family. Thank you for being a shining light.
Gina (wife to Rudy)
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- July 27, 2013 at 10:11 am
POW, go and enjoy life and don't linger in the world of melanoma. Those of us with the disease have no choice and would grab the chance to be free of worry and not even be visiting melanoma forums. No doubt, you do spend a lot of time researching in your quest to help others but you must move on.
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- July 27, 2013 at 11:05 am
My husband was approved for disability which starts six month after "disability date"and will get his first check Oct. 9, but we were told he cant get medicare until two years on disability. He is still on employer plan, stringing them along like he might come back and they have kindly kept him on. we figured cobra when they finally cut him off but that will be super expensive. how did you get coverage so quickly? Thanks.
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- July 27, 2013 at 11:11 am
POW is a wonderful and compassionate person who obviously loved his brother very much and he has kindly offered intelligent, well researched and helpful comments and support to the us caregivers who go through their own special type of hell dealing with loved one's melanomas. I guess you have to be "Anonymous" to insult someone unnecessarily. POW please understand that the vast majority of posters appreciate your info and support and I have no doubt that you can live your life and still be involved here in memory of your brother. Thanks for all you do and dont pay attention to those ridiculous comments. Vicki, loving wife to Randall, Stage 4
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- July 27, 2013 at 11:36 am
Hey, Folks-
While I value your concern and appreciation, let's get this thread off of me and back where it isupposed to me– Gina and Rduy and her Tafinlar (dabrafenib) and Mekinist (trametinib) combo questions.
Gina, thanks for the info about Medicare/Cal Optima covering the combo. That's really good to know.
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- July 27, 2013 at 11:19 pm
Hello. The only reason that he was able to get it so soon is because by the time that he was diagnosed he was already stage 4 and very ill and could not continue working. His employer, although sympathetic, had to fill his position, although they stated that he could come back if and when he recovers. At that time I was working from home having started my own legal document preparation business (after a year of being unemployed so that I could care for my dying mother who was on hospice care and passed away this past October from lung cancer.) We were living and depending on my husbands income and when that was gone I was advised to apply for Medicare, which I didn't think that we would qualify being that we own a home. To my surprise we did qualify for medical benefits based upon no income. We are soon going to have to pay a share of costs, which we haven't received the official letter yet, but we know its coming due to his receiving temporary disability benefits and because he will be receiving his federal disability benefits in September. We have two sons at home, one of which is still a minor child, I think that is a factor which is considered as well when determining who qualifies. Even if we had the money to buy coverage, which we did not, we could not afford coverage (assuming we could find some) because now he has a pre-existing condition. I immediately looked into getting him covered under the obamacare PCIP (pre-existing conditions insurance plan) only to learn that it had run out of funds and had stopped taking enrollments a month before he was diagnosed!! Let me remind you that we had always had medical coverage, we were unable to afford coverage on our own when my husband was laid off and although he found employment right away he was still waiting the 6 month period before he became eligible for benefits, and he was diagnosed during the 6 month wait. Ironically, my husband had always been the picture of perfect health, he never had any medical issue at all, no major illnesses, no surgeries, or the like. I guess one can never predict when cancer will strike.
The problems with our health system are many but we have not seen the worst of it which is I believe is yet to come, I hope I'm wrong. I am a certified paralegal and worked for many years for a plaintiff insurance firm who recovered disability benefits for disabled clients whose claims were wrongly denied by insurance companies, so I am experienced in this area. Although our cases mainly dealt with private insurance plan denials, all of our clients were receiving or had filed a claim and been denied federal disability benefits. The clients federal claim details were an extensive part of their case file and were part of my work on each case. As such, I learned a lot about how the federal claims work. Having that knowledge I figured that we would be (wrongly) denied benefits initially, as that is a customary practice done by our own government in hopes that patients will give up after repeated denials. I could tell you stories that would bring tears to those with even the most hardened of hearts. Bottom line is that our government practices in this area are despicable, so I was more than prepared with the information that I knew they would need for a quick approval (how could they deny a claim with a terminal illness, right?) but I was prepared in the event that they did as it would not have been the first time. It's a shame that so many truly disabled citizens, that worked their whole lives and paid into the system, aren't as fortunate, my mother was one of those citizens (she suffered for 20 years with rheumatoid arthritis and was completely crippled unable to use her hands or her feet because of severe deformity, and for the preceding 3 years before her death she suffered from COPD and lung cancer, finally succumbing at age 61) and yet we have programs in place that give aid to many who are not even citizens, but I'm so off topic, please forgive my rant!
I'm happy to learn that your husband was approved for federal disability benefits without difficulty as well. The cynic in me wants to know why they make a terminally ill person wait 6 months to receive monetary benefits and 2 years to receive medical benefits. Is it in hopes that these benefits will never have to be paid? I wonder. I understand what you mean about Cobra and the extremely high cost (we could never afford that coverage!) so I will pray that your husbands employer is kind enough to keep him on until the new health care mandates go into effect beginning in 2014, one of which will force insurance companies to offer affordable health care plans to those with pre-existing conditions. The definition of "affordable" remains to be seen, doesn't it?
Again, sorry for going so off topic and the long winded answer! I do feel better though, lol!
Best of luck to you and your husband.
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- July 27, 2013 at 11:29 pm
I wish the best to your husband. I have been on these 2 drugs for more than 2 years in the GSK clinical trial. I can vouch that the side effects tend to be much less than on Zelboraf (from my own experience as well as from conversations with clinic staff). Also, the combination may have longer-lasting benefits.
– Harry
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- July 27, 2013 at 11:29 pm
I wish the best to your husband. I have been on these 2 drugs for more than 2 years in the GSK clinical trial. I can vouch that the side effects tend to be much less than on Zelboraf (from my own experience as well as from conversations with clinic staff). Also, the combination may have longer-lasting benefits.
– Harry
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- July 27, 2013 at 11:29 pm
I wish the best to your husband. I have been on these 2 drugs for more than 2 years in the GSK clinical trial. I can vouch that the side effects tend to be much less than on Zelboraf (from my own experience as well as from conversations with clinic staff). Also, the combination may have longer-lasting benefits.
– Harry
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- July 27, 2013 at 11:30 pm
You are being very rude and I'm sure that's why you are anonymous. POW provides a lot of good information and support to many on this site, who are you to judge? Show who you are or get off my post, please. My question had nothing to do with what you speak of so you should be the one moving on, dear friend. I realize you are suffering but it does not excuse your behavior. I will pray for you regardless.
May the Lord be your strength and may he ease your suffering.
God bless you,
Gina
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- July 27, 2013 at 11:42 pm
You're welcome! Please pay no mind to the comments made by anonymous, instead, pray with me for whomever this person is that the Lord give he/she understanding and compassion for those of us who suffer right along with our loved ones who have melanoma or who have since lost their battle.
Take care and God bless you!
Gina
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- July 28, 2013 at 10:20 am
Thank you Harry. I am happy to hear that you have been on the combo for so long and that the side effects are less severe. Praying for your continued success on the combo!
God bless you,
Gina
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- July 26, 2013 at 11:18 pm
I am sorry if I offended you. I did not mean to imply that I am a member of the "club" of melanoma patients. Anyone who checks my profile can see that.
But I am a member of the club whose lives have been turned upside down by this vile disease. I am a member of the club of primary caregivers who sweated and fretted and researched and cheered and cried and shared a foxhole with our melanoma-stricken loved ones. And I am a member of the club who comes to this forum to learn and to share what we have learned and to support each other in any way we can during this difficult time.
I do not believe that caregivers have it harder than patients; we don't. But we are members of "the club".
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- July 26, 2013 at 11:18 pm
I am sorry if I offended you. I did not mean to imply that I am a member of the "club" of melanoma patients. Anyone who checks my profile can see that.
But I am a member of the club whose lives have been turned upside down by this vile disease. I am a member of the club of primary caregivers who sweated and fretted and researched and cheered and cried and shared a foxhole with our melanoma-stricken loved ones. And I am a member of the club who comes to this forum to learn and to share what we have learned and to support each other in any way we can during this difficult time.
I do not believe that caregivers have it harder than patients; we don't. But we are members of "the club".
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- August 2, 2013 at 10:14 am
Hi Gina, I was diagnosed with Stage IV just a few weeks ago. While I have a number of mets, my most significant issue is with my liver (like you husband?). At first, I was looking at a number of the options discussed on this site, but I was re-scanned this week and it is now clear that the Tafinlar-Mekinist combo are my best option at this point. I'm literally starting today (just waiting on the UPS package). I know that your husband just recently started on the combo. How is he doing so far? My oncologist says that some patients start to "feel better" in just a few days. How have the side effects been so far? Thanks for the information.
Mat
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- August 2, 2013 at 10:14 am
Hi Gina, I was diagnosed with Stage IV just a few weeks ago. While I have a number of mets, my most significant issue is with my liver (like you husband?). At first, I was looking at a number of the options discussed on this site, but I was re-scanned this week and it is now clear that the Tafinlar-Mekinist combo are my best option at this point. I'm literally starting today (just waiting on the UPS package). I know that your husband just recently started on the combo. How is he doing so far? My oncologist says that some patients start to "feel better" in just a few days. How have the side effects been so far? Thanks for the information.
Mat
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- August 2, 2013 at 10:14 am
Hi Gina, I was diagnosed with Stage IV just a few weeks ago. While I have a number of mets, my most significant issue is with my liver (like you husband?). At first, I was looking at a number of the options discussed on this site, but I was re-scanned this week and it is now clear that the Tafinlar-Mekinist combo are my best option at this point. I'm literally starting today (just waiting on the UPS package). I know that your husband just recently started on the combo. How is he doing so far? My oncologist says that some patients start to "feel better" in just a few days. How have the side effects been so far? Thanks for the information.
Mat
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- August 2, 2013 at 10:16 am
Hi Gina, I was diagnosed with Stage IV just a few weeks ago. While I have a number of mets, my most significant issue is with my liver (like you husband?). At first, I was looking at a number of the options discussed on this site, but I was re-scanned this week and it is now clear that the Tafinlar-Mekinist combo are my best option at this point. I'm literally starting today (just waiting on the UPS package). I know that your husband just recently started on the combo. How is he doing so far? My oncologist says that some patients start to "feel better" in just a few days. How have the side effects been so far? Thanks for the information.
Mat
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- August 2, 2013 at 10:16 am
Hi Gina, I was diagnosed with Stage IV just a few weeks ago. While I have a number of mets, my most significant issue is with my liver (like you husband?). At first, I was looking at a number of the options discussed on this site, but I was re-scanned this week and it is now clear that the Tafinlar-Mekinist combo are my best option at this point. I'm literally starting today (just waiting on the UPS package). I know that your husband just recently started on the combo. How is he doing so far? My oncologist says that some patients start to "feel better" in just a few days. How have the side effects been so far? Thanks for the information.
Mat
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- March 23, 2015 at 4:52 pm
So…I was reading through this string, but don't see any recent posts. I too have recently been diagnosed stage 4 with mets on my liver and have been on Tafinlar/MEK combo for 8 weeks now. I go in for scan to check effectivness in another week and a half. Everything as far as symptoms and/or side effects going well so far, was curious to see how others are doing…
Jim
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- March 23, 2015 at 4:52 pm
So…I was reading through this string, but don't see any recent posts. I too have recently been diagnosed stage 4 with mets on my liver and have been on Tafinlar/MEK combo for 8 weeks now. I go in for scan to check effectivness in another week and a half. Everything as far as symptoms and/or side effects going well so far, was curious to see how others are doing…
Jim
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- March 23, 2015 at 4:52 pm
So…I was reading through this string, but don't see any recent posts. I too have recently been diagnosed stage 4 with mets on my liver and have been on Tafinlar/MEK combo for 8 weeks now. I go in for scan to check effectivness in another week and a half. Everything as far as symptoms and/or side effects going well so far, was curious to see how others are doing…
Jim
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- August 2, 2013 at 10:16 am
Hi Gina, I was diagnosed with Stage IV just a few weeks ago. While I have a number of mets, my most significant issue is with my liver (like you husband?). At first, I was looking at a number of the options discussed on this site, but I was re-scanned this week and it is now clear that the Tafinlar-Mekinist combo are my best option at this point. I'm literally starting today (just waiting on the UPS package). I know that your husband just recently started on the combo. How is he doing so far? My oncologist says that some patients start to "feel better" in just a few days. How have the side effects been so far? Thanks for the information.
Mat
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- August 8, 2013 at 10:41 pm
Gina, thanks for your reply. Yes, the Tafinlar-Mekinist combination is my first treatment following diagnosis. This is a recurrence 10 years after I had a relatively thin melanoma removed (with wide incision, sentinel lymph node testing, PET scan, etc.). I had been pursuing the TIL treatment at NIH, but it was determined that the tumor burden in my liver needed to be addressed first. Fortunately, I was BRAF 600 positive.
I've now been on the combo for 7 days. I know that I'm early in the cycle for side effects. So far, they are very manageable–just some hip soreness for me. I had two relatively small subcutaneous tumors–one has totally disappeared and the other is a small fraction of the size it was just 7 days ago. I also think I have that "feel better" feeling–hard to tell. Like your husband, I was relatively asymptomatic at diagnosis (just went for my routine visit). I have been feeling some liver sensation/pain over the past few weeks and that might be improving (hard to tell). On the other hand, I also developed a bone lesion in my jaw (causing numbness) and that has not resolved (yet). I have a blood test for liver function tomorrow, so that will be a big test. If things go well, I'll think about starting a new thread here–because this combo may be truly amazing (as others have said). In so many words, I was effectively told last week that this "needs" to work for me–if you know what I mean.
I wish you and your husband the best and hope that he has an easier time with the side effects. I'm married with young children (including a baby born only a month before my diagnosis), so I certainly know what you're going through.
Thanks again, Mat
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- August 9, 2013 at 9:51 am
Hi Mat, no problem. I am glad to hear that you are doing okay so far on the combo! I have a good feeling about it and believe that my husband is going to continue to see a reduction in his tumor load with this treatment and I pray for the same result for you. I know what you mean about how the combo "needs" to work for you. With young children and a wife you have so many reasons to live, it will work for you and you will beat this, you have to believe that with all your heart!
I must share with you that I believe that my husband is doing so well not only because of his treatment but because of the many other changes that we made since his diagnosis . We immediately cut out all processed foods and refined sugar, he now eats mostly all organic foods and I serve him fresh vegetable drinks that I prepare in a "Juicer" daily. In addition, he takes several supplements and hemp oil. Have you heard of Rick Simpson and "the cure?" If not, Google and watch his video, my husband has been taking it for two months. If you want more details, I will gladly give them to you in a private message. His oncologist is aware of this and does not oppose it.
Again, praying for you and your family. Stay strong dear friend.
Gina
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- June 18, 2016 at 1:31 pm
Hi Gina,
I'm taking a shot in the dark here (time wise) but I'm just curious as to how your husband is doing? Did the combo drug and oil work for him? I just started the combo drug today and have been doing major research on the Simpson oil. How were his side effects on the drug? Im expecting the worst but hoping for the best. You hear of rash, rapid weight gain, hair loss and joint pain as the most common. Did he have any of this other than the sore feet? Hopefully I'll be able to hear from you soon! Take care!
Alyssa
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- June 18, 2016 at 1:31 pm
Hi Gina,
I'm taking a shot in the dark here (time wise) but I'm just curious as to how your husband is doing? Did the combo drug and oil work for him? I just started the combo drug today and have been doing major research on the Simpson oil. How were his side effects on the drug? Im expecting the worst but hoping for the best. You hear of rash, rapid weight gain, hair loss and joint pain as the most common. Did he have any of this other than the sore feet? Hopefully I'll be able to hear from you soon! Take care!
Alyssa
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- June 18, 2016 at 1:31 pm
Hi Gina,
I'm taking a shot in the dark here (time wise) but I'm just curious as to how your husband is doing? Did the combo drug and oil work for him? I just started the combo drug today and have been doing major research on the Simpson oil. How were his side effects on the drug? Im expecting the worst but hoping for the best. You hear of rash, rapid weight gain, hair loss and joint pain as the most common. Did he have any of this other than the sore feet? Hopefully I'll be able to hear from you soon! Take care!
Alyssa
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- March 31, 2015 at 9:48 am
This is unbelievable I never knew cannabis oil was indeed wonderful and very effective in the treatment of cancer “if not by the government and so called rules to regulate cannabis for help my Husband to cure the Lung cancer would still have been alive. Thanks to the new policy of legalizing cannabis in my state and have even lost my Husband Lung cancer, and it was really shocked and surprised when I see a lot of documentary on how the cannabis oil had helped many people to whom His family thought they never could do next undergoing several “Chemo” from the department of my heart, and I have to say a word of appreciation to Rick Simpson for timely intervention in the lives of my Husband suffering from Lung cancer. As I write this testimony in this blog my Husband is so strong and healthy even though you have not completed the total dosage “for cannabis and medical consultation opportunity and get in touch with him if you are a cancer patient through his email: [email protected] to get this miraculous oil. So far so good my Husband is responding to treatment of cannabis oil and the health condition have improved drastically for good. Here is his email: [email protected]
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- January 19, 2016 at 3:10 pm
Hi there. My mother was just diagnosed with Stage 4 melanoma in December 2015. It has spread to her lungs, liver, thyroid and just recently her bones and spine. She has been on the Mekinist and Tafinlar combination for 2 weeks now. I personally haven't seen much of a difference but she said she definitely has. She says she feels more aware. My question to you all is, has anyone been on this combiation of meds and also used the cannabis oil? I have researched the oil itself and it has done some amazing things. I got my hands on some (which is not easy) and my mother is scared to try it that it may interfere with her meds. I'm trying not to give up hope and want her to try anything there is that may help. Can anyone that has experience this please respond and let me know if we should try this or ask the doctor or…? My mother is my very best friend and I'm so scared of losing her. Thank you.
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- February 16, 2016 at 6:01 am
Hi there , I hope your mother get well soon . I have the same case with my brother . He just did MI profile including gene sequences that indicate he should take Mekinist + trametini so I have few questions if you could help me with .
Could you please tell me how much does Mekinist + trametinib cost as combo drug?
Also is there any organization could help a patient financially who is not american citizen ?
Many thanks ,
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- February 16, 2016 at 6:01 am
Hi there , I hope your mother get well soon . I have the same case with my brother . He just did MI profile including gene sequences that indicate he should take Mekinist + trametini so I have few questions if you could help me with .
Could you please tell me how much does Mekinist + trametinib cost as combo drug?
Also is there any organization could help a patient financially who is not american citizen ?
Many thanks ,
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- February 16, 2016 at 6:01 am
Hi there , I hope your mother get well soon . I have the same case with my brother . He just did MI profile including gene sequences that indicate he should take Mekinist + trametini so I have few questions if you could help me with .
Could you please tell me how much does Mekinist + trametinib cost as combo drug?
Also is there any organization could help a patient financially who is not american citizen ?
Many thanks ,
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- January 19, 2016 at 3:10 pm
Hi there. My mother was just diagnosed with Stage 4 melanoma in December 2015. It has spread to her lungs, liver, thyroid and just recently her bones and spine. She has been on the Mekinist and Tafinlar combination for 2 weeks now. I personally haven't seen much of a difference but she said she definitely has. She says she feels more aware. My question to you all is, has anyone been on this combiation of meds and also used the cannabis oil? I have researched the oil itself and it has done some amazing things. I got my hands on some (which is not easy) and my mother is scared to try it that it may interfere with her meds. I'm trying not to give up hope and want her to try anything there is that may help. Can anyone that has experience this please respond and let me know if we should try this or ask the doctor or…? My mother is my very best friend and I'm so scared of losing her. Thank you.
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- January 19, 2016 at 3:10 pm
Hi there. My mother was just diagnosed with Stage 4 melanoma in December 2015. It has spread to her lungs, liver, thyroid and just recently her bones and spine. She has been on the Mekinist and Tafinlar combination for 2 weeks now. I personally haven't seen much of a difference but she said she definitely has. She says she feels more aware. My question to you all is, has anyone been on this combiation of meds and also used the cannabis oil? I have researched the oil itself and it has done some amazing things. I got my hands on some (which is not easy) and my mother is scared to try it that it may interfere with her meds. I'm trying not to give up hope and want her to try anything there is that may help. Can anyone that has experience this please respond and let me know if we should try this or ask the doctor or…? My mother is my very best friend and I'm so scared of losing her. Thank you.
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- March 31, 2015 at 9:48 am
This is unbelievable I never knew cannabis oil was indeed wonderful and very effective in the treatment of cancer “if not by the government and so called rules to regulate cannabis for help my Husband to cure the Lung cancer would still have been alive. Thanks to the new policy of legalizing cannabis in my state and have even lost my Husband Lung cancer, and it was really shocked and surprised when I see a lot of documentary on how the cannabis oil had helped many people to whom His family thought they never could do next undergoing several “Chemo” from the department of my heart, and I have to say a word of appreciation to Rick Simpson for timely intervention in the lives of my Husband suffering from Lung cancer. As I write this testimony in this blog my Husband is so strong and healthy even though you have not completed the total dosage “for cannabis and medical consultation opportunity and get in touch with him if you are a cancer patient through his email: [email protected] to get this miraculous oil. So far so good my Husband is responding to treatment of cannabis oil and the health condition have improved drastically for good. Here is his email: [email protected]
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- March 31, 2015 at 9:48 am
This is unbelievable I never knew cannabis oil was indeed wonderful and very effective in the treatment of cancer “if not by the government and so called rules to regulate cannabis for help my Husband to cure the Lung cancer would still have been alive. Thanks to the new policy of legalizing cannabis in my state and have even lost my Husband Lung cancer, and it was really shocked and surprised when I see a lot of documentary on how the cannabis oil had helped many people to whom His family thought they never could do next undergoing several “Chemo” from the department of my heart, and I have to say a word of appreciation to Rick Simpson for timely intervention in the lives of my Husband suffering from Lung cancer. As I write this testimony in this blog my Husband is so strong and healthy even though you have not completed the total dosage “for cannabis and medical consultation opportunity and get in touch with him if you are a cancer patient through his email: [email protected] to get this miraculous oil. So far so good my Husband is responding to treatment of cannabis oil and the health condition have improved drastically for good. Here is his email: [email protected]
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- July 27, 2013 at 9:52 am
Hi POW, thank you! Please see my response to the post above with respect to coverage. You are right, I am frightfully aware of the resistance tendency and we have a plan in place in preparation of that probability. My husband is being treated at a cancer center where there are many ongoing clinical trials for melanoma, many of those trials are being done by his oncologist, Dr. John Fruehauf. Please see my reply above for Dr. Fruehauf's information.
I applaud the work that you do here on this site for the patients and their loved ones whom are also the caregivers! I have been a nightly visitor to the site and have been so impressed with the love, support, information and good advice that you have so faithfully given and continue to give every day. You are, in my opinion, doing Gods work and I am very grateful. I have learned a lot from your posts and that has been a blessing to my family. Thank you for being a shining light.
Gina (wife to Rudy)
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- July 27, 2013 at 9:52 am
Hi POW, thank you! Please see my response to the post above with respect to coverage. You are right, I am frightfully aware of the resistance tendency and we have a plan in place in preparation of that probability. My husband is being treated at a cancer center where there are many ongoing clinical trials for melanoma, many of those trials are being done by his oncologist, Dr. John Fruehauf. Please see my reply above for Dr. Fruehauf's information.
I applaud the work that you do here on this site for the patients and their loved ones whom are also the caregivers! I have been a nightly visitor to the site and have been so impressed with the love, support, information and good advice that you have so faithfully given and continue to give every day. You are, in my opinion, doing Gods work and I am very grateful. I have learned a lot from your posts and that has been a blessing to my family. Thank you for being a shining light.
Gina (wife to Rudy)
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- July 27, 2013 at 9:20 am
Hello Donna. It is true that the FDA has not approved the combo, however, my husband had a scheduled visit with his oncologist on June 4th, which was the week after the drugs were approved, and he prescribed both drugs and said that we might have difficulty getting the meds immediately and that I should contact the drug manufacturer to find out when they would be available. He didn't mention that they hadn't been approved as a combo, I learned that from this site and the article that someone posted about the FDA approval. As such, after reading the article I was anticipating some sort of difficulty on coverage and a denial of at least one of the meds but we got lucky and both were approved. Unfortunately, my husband was not covered under any medical insurance plan at the time of his diagnosis due to a job change, and he was a month away from being eligible for medical benefits with his new employer when we got the devastating news (and this is after being insured for most of his life, ironically.) In any event, we are covered now, thank God, under Medicare/Cal Optima due to his being immediately approved for Social Security Disability Insurance benefits.
Again, we were lucky that his insurance approved them both, however, I recommend that anyone who is considering the combo to get the prescriptions and give it a shot! It's my understanding that an application has already been submitted to the FDA for approval as a combo and that it should be approved soon. We are very happy with the care that my husband is receiving from his oncologist, Dr. John Fruehauf, a melanoma specialist from the Chao Family Comprehensive Cancer Center at University of California – Irvine. It is one of the best and the closest cancer centers in our area of Southern California.
Blessings to you and your husband!
Gina (wife to Rudy)
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- July 27, 2013 at 9:20 am
Hello Donna. It is true that the FDA has not approved the combo, however, my husband had a scheduled visit with his oncologist on June 4th, which was the week after the drugs were approved, and he prescribed both drugs and said that we might have difficulty getting the meds immediately and that I should contact the drug manufacturer to find out when they would be available. He didn't mention that they hadn't been approved as a combo, I learned that from this site and the article that someone posted about the FDA approval. As such, after reading the article I was anticipating some sort of difficulty on coverage and a denial of at least one of the meds but we got lucky and both were approved. Unfortunately, my husband was not covered under any medical insurance plan at the time of his diagnosis due to a job change, and he was a month away from being eligible for medical benefits with his new employer when we got the devastating news (and this is after being insured for most of his life, ironically.) In any event, we are covered now, thank God, under Medicare/Cal Optima due to his being immediately approved for Social Security Disability Insurance benefits.
Again, we were lucky that his insurance approved them both, however, I recommend that anyone who is considering the combo to get the prescriptions and give it a shot! It's my understanding that an application has already been submitted to the FDA for approval as a combo and that it should be approved soon. We are very happy with the care that my husband is receiving from his oncologist, Dr. John Fruehauf, a melanoma specialist from the Chao Family Comprehensive Cancer Center at University of California – Irvine. It is one of the best and the closest cancer centers in our area of Southern California.
Blessings to you and your husband!
Gina (wife to Rudy)
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- July 27, 2013 at 10:11 am
POW, go and enjoy life and don't linger in the world of melanoma. Those of us with the disease have no choice and would grab the chance to be free of worry and not even be visiting melanoma forums. No doubt, you do spend a lot of time researching in your quest to help others but you must move on.
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- July 27, 2013 at 10:11 am
POW, go and enjoy life and don't linger in the world of melanoma. Those of us with the disease have no choice and would grab the chance to be free of worry and not even be visiting melanoma forums. No doubt, you do spend a lot of time researching in your quest to help others but you must move on.
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- July 27, 2013 at 11:05 am
My husband was approved for disability which starts six month after "disability date"and will get his first check Oct. 9, but we were told he cant get medicare until two years on disability. He is still on employer plan, stringing them along like he might come back and they have kindly kept him on. we figured cobra when they finally cut him off but that will be super expensive. how did you get coverage so quickly? Thanks.
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- July 27, 2013 at 11:05 am
My husband was approved for disability which starts six month after "disability date"and will get his first check Oct. 9, but we were told he cant get medicare until two years on disability. He is still on employer plan, stringing them along like he might come back and they have kindly kept him on. we figured cobra when they finally cut him off but that will be super expensive. how did you get coverage so quickly? Thanks.
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- July 27, 2013 at 11:11 am
POW is a wonderful and compassionate person who obviously loved his brother very much and he has kindly offered intelligent, well researched and helpful comments and support to the us caregivers who go through their own special type of hell dealing with loved one's melanomas. I guess you have to be "Anonymous" to insult someone unnecessarily. POW please understand that the vast majority of posters appreciate your info and support and I have no doubt that you can live your life and still be involved here in memory of your brother. Thanks for all you do and dont pay attention to those ridiculous comments. Vicki, loving wife to Randall, Stage 4
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- July 27, 2013 at 11:11 am
POW is a wonderful and compassionate person who obviously loved his brother very much and he has kindly offered intelligent, well researched and helpful comments and support to the us caregivers who go through their own special type of hell dealing with loved one's melanomas. I guess you have to be "Anonymous" to insult someone unnecessarily. POW please understand that the vast majority of posters appreciate your info and support and I have no doubt that you can live your life and still be involved here in memory of your brother. Thanks for all you do and dont pay attention to those ridiculous comments. Vicki, loving wife to Randall, Stage 4
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- July 27, 2013 at 11:30 pm
You are being very rude and I'm sure that's why you are anonymous. POW provides a lot of good information and support to many on this site, who are you to judge? Show who you are or get off my post, please. My question had nothing to do with what you speak of so you should be the one moving on, dear friend. I realize you are suffering but it does not excuse your behavior. I will pray for you regardless.
May the Lord be your strength and may he ease your suffering.
God bless you,
Gina
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- July 27, 2013 at 11:30 pm
You are being very rude and I'm sure that's why you are anonymous. POW provides a lot of good information and support to many on this site, who are you to judge? Show who you are or get off my post, please. My question had nothing to do with what you speak of so you should be the one moving on, dear friend. I realize you are suffering but it does not excuse your behavior. I will pray for you regardless.
May the Lord be your strength and may he ease your suffering.
God bless you,
Gina
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- July 27, 2013 at 11:36 am
Hey, Folks-
While I value your concern and appreciation, let's get this thread off of me and back where it isupposed to me– Gina and Rduy and her Tafinlar (dabrafenib) and Mekinist (trametinib) combo questions.
Gina, thanks for the info about Medicare/Cal Optima covering the combo. That's really good to know.
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- July 27, 2013 at 11:36 am
Hey, Folks-
While I value your concern and appreciation, let's get this thread off of me and back where it isupposed to me– Gina and Rduy and her Tafinlar (dabrafenib) and Mekinist (trametinib) combo questions.
Gina, thanks for the info about Medicare/Cal Optima covering the combo. That's really good to know.
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- July 27, 2013 at 11:19 pm
Hello. The only reason that he was able to get it so soon is because by the time that he was diagnosed he was already stage 4 and very ill and could not continue working. His employer, although sympathetic, had to fill his position, although they stated that he could come back if and when he recovers. At that time I was working from home having started my own legal document preparation business (after a year of being unemployed so that I could care for my dying mother who was on hospice care and passed away this past October from lung cancer.) We were living and depending on my husbands income and when that was gone I was advised to apply for Medicare, which I didn't think that we would qualify being that we own a home. To my surprise we did qualify for medical benefits based upon no income. We are soon going to have to pay a share of costs, which we haven't received the official letter yet, but we know its coming due to his receiving temporary disability benefits and because he will be receiving his federal disability benefits in September. We have two sons at home, one of which is still a minor child, I think that is a factor which is considered as well when determining who qualifies. Even if we had the money to buy coverage, which we did not, we could not afford coverage (assuming we could find some) because now he has a pre-existing condition. I immediately looked into getting him covered under the obamacare PCIP (pre-existing conditions insurance plan) only to learn that it had run out of funds and had stopped taking enrollments a month before he was diagnosed!! Let me remind you that we had always had medical coverage, we were unable to afford coverage on our own when my husband was laid off and although he found employment right away he was still waiting the 6 month period before he became eligible for benefits, and he was diagnosed during the 6 month wait. Ironically, my husband had always been the picture of perfect health, he never had any medical issue at all, no major illnesses, no surgeries, or the like. I guess one can never predict when cancer will strike.
The problems with our health system are many but we have not seen the worst of it which is I believe is yet to come, I hope I'm wrong. I am a certified paralegal and worked for many years for a plaintiff insurance firm who recovered disability benefits for disabled clients whose claims were wrongly denied by insurance companies, so I am experienced in this area. Although our cases mainly dealt with private insurance plan denials, all of our clients were receiving or had filed a claim and been denied federal disability benefits. The clients federal claim details were an extensive part of their case file and were part of my work on each case. As such, I learned a lot about how the federal claims work. Having that knowledge I figured that we would be (wrongly) denied benefits initially, as that is a customary practice done by our own government in hopes that patients will give up after repeated denials. I could tell you stories that would bring tears to those with even the most hardened of hearts. Bottom line is that our government practices in this area are despicable, so I was more than prepared with the information that I knew they would need for a quick approval (how could they deny a claim with a terminal illness, right?) but I was prepared in the event that they did as it would not have been the first time. It's a shame that so many truly disabled citizens, that worked their whole lives and paid into the system, aren't as fortunate, my mother was one of those citizens (she suffered for 20 years with rheumatoid arthritis and was completely crippled unable to use her hands or her feet because of severe deformity, and for the preceding 3 years before her death she suffered from COPD and lung cancer, finally succumbing at age 61) and yet we have programs in place that give aid to many who are not even citizens, but I'm so off topic, please forgive my rant!
I'm happy to learn that your husband was approved for federal disability benefits without difficulty as well. The cynic in me wants to know why they make a terminally ill person wait 6 months to receive monetary benefits and 2 years to receive medical benefits. Is it in hopes that these benefits will never have to be paid? I wonder. I understand what you mean about Cobra and the extremely high cost (we could never afford that coverage!) so I will pray that your husbands employer is kind enough to keep him on until the new health care mandates go into effect beginning in 2014, one of which will force insurance companies to offer affordable health care plans to those with pre-existing conditions. The definition of "affordable" remains to be seen, doesn't it?
Again, sorry for going so off topic and the long winded answer! I do feel better though, lol!
Best of luck to you and your husband.
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- July 27, 2013 at 11:19 pm
Hello. The only reason that he was able to get it so soon is because by the time that he was diagnosed he was already stage 4 and very ill and could not continue working. His employer, although sympathetic, had to fill his position, although they stated that he could come back if and when he recovers. At that time I was working from home having started my own legal document preparation business (after a year of being unemployed so that I could care for my dying mother who was on hospice care and passed away this past October from lung cancer.) We were living and depending on my husbands income and when that was gone I was advised to apply for Medicare, which I didn't think that we would qualify being that we own a home. To my surprise we did qualify for medical benefits based upon no income. We are soon going to have to pay a share of costs, which we haven't received the official letter yet, but we know its coming due to his receiving temporary disability benefits and because he will be receiving his federal disability benefits in September. We have two sons at home, one of which is still a minor child, I think that is a factor which is considered as well when determining who qualifies. Even if we had the money to buy coverage, which we did not, we could not afford coverage (assuming we could find some) because now he has a pre-existing condition. I immediately looked into getting him covered under the obamacare PCIP (pre-existing conditions insurance plan) only to learn that it had run out of funds and had stopped taking enrollments a month before he was diagnosed!! Let me remind you that we had always had medical coverage, we were unable to afford coverage on our own when my husband was laid off and although he found employment right away he was still waiting the 6 month period before he became eligible for benefits, and he was diagnosed during the 6 month wait. Ironically, my husband had always been the picture of perfect health, he never had any medical issue at all, no major illnesses, no surgeries, or the like. I guess one can never predict when cancer will strike.
The problems with our health system are many but we have not seen the worst of it which is I believe is yet to come, I hope I'm wrong. I am a certified paralegal and worked for many years for a plaintiff insurance firm who recovered disability benefits for disabled clients whose claims were wrongly denied by insurance companies, so I am experienced in this area. Although our cases mainly dealt with private insurance plan denials, all of our clients were receiving or had filed a claim and been denied federal disability benefits. The clients federal claim details were an extensive part of their case file and were part of my work on each case. As such, I learned a lot about how the federal claims work. Having that knowledge I figured that we would be (wrongly) denied benefits initially, as that is a customary practice done by our own government in hopes that patients will give up after repeated denials. I could tell you stories that would bring tears to those with even the most hardened of hearts. Bottom line is that our government practices in this area are despicable, so I was more than prepared with the information that I knew they would need for a quick approval (how could they deny a claim with a terminal illness, right?) but I was prepared in the event that they did as it would not have been the first time. It's a shame that so many truly disabled citizens, that worked their whole lives and paid into the system, aren't as fortunate, my mother was one of those citizens (she suffered for 20 years with rheumatoid arthritis and was completely crippled unable to use her hands or her feet because of severe deformity, and for the preceding 3 years before her death she suffered from COPD and lung cancer, finally succumbing at age 61) and yet we have programs in place that give aid to many who are not even citizens, but I'm so off topic, please forgive my rant!
I'm happy to learn that your husband was approved for federal disability benefits without difficulty as well. The cynic in me wants to know why they make a terminally ill person wait 6 months to receive monetary benefits and 2 years to receive medical benefits. Is it in hopes that these benefits will never have to be paid? I wonder. I understand what you mean about Cobra and the extremely high cost (we could never afford that coverage!) so I will pray that your husbands employer is kind enough to keep him on until the new health care mandates go into effect beginning in 2014, one of which will force insurance companies to offer affordable health care plans to those with pre-existing conditions. The definition of "affordable" remains to be seen, doesn't it?
Again, sorry for going so off topic and the long winded answer! I do feel better though, lol!
Best of luck to you and your husband.
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- July 27, 2013 at 11:42 pm
You're welcome! Please pay no mind to the comments made by anonymous, instead, pray with me for whomever this person is that the Lord give he/she understanding and compassion for those of us who suffer right along with our loved ones who have melanoma or who have since lost their battle.
Take care and God bless you!
Gina
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- July 27, 2013 at 11:42 pm
You're welcome! Please pay no mind to the comments made by anonymous, instead, pray with me for whomever this person is that the Lord give he/she understanding and compassion for those of us who suffer right along with our loved ones who have melanoma or who have since lost their battle.
Take care and God bless you!
Gina
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- August 8, 2013 at 10:39 am
Hi Mat, I am very sorry that you too were diagnosed with this dreaded cancer! It is very overwhelming to get such devastating news, we know how you feel. My husband is doing well so far and the side effects have been minimal. He has a little fatigue and some over all body aches and he has had only one instance of nausea. Although, today he started getting one of the same more severe and painful side effects that he had on Zel of extremely sore feet (soles) which hurt him when he walks and he had to use an ice pack several times for relief. It should be noted that he is/was still able to walk and when he got this side effect on Zel the pain was so severe that he could not walk at all. With that said, it appears that for him the side effects are proving to be fewer and less severe, at least so far!
Will this be your first treatment of any kind for your melanoma? Are you already feeling the effects of your tumor burden? My husband was not feeling sick at the time of his diagnosis, so basically it's been the chemo that has made him feel ill more than his cancer. It's true that for my husband Zel started helping immediately and Dabrafenib is, I believe, very similar to Zel, if not the same. I have read stories on here posted by some who were suffering from a lot of pain caused by their tumor burden and then a few days following the beginning of treatment they started to "feel better" , so that is true for many.
I hope that you are doing well so far on the combo, please keep me updated on your progress, if you don't mind. I will be praying for you Mat. Please know that you are not alone.
Love and blessings to you and yours,
Gina Rangel
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- August 8, 2013 at 10:39 am
Hi Mat, I am very sorry that you too were diagnosed with this dreaded cancer! It is very overwhelming to get such devastating news, we know how you feel. My husband is doing well so far and the side effects have been minimal. He has a little fatigue and some over all body aches and he has had only one instance of nausea. Although, today he started getting one of the same more severe and painful side effects that he had on Zel of extremely sore feet (soles) which hurt him when he walks and he had to use an ice pack several times for relief. It should be noted that he is/was still able to walk and when he got this side effect on Zel the pain was so severe that he could not walk at all. With that said, it appears that for him the side effects are proving to be fewer and less severe, at least so far!
Will this be your first treatment of any kind for your melanoma? Are you already feeling the effects of your tumor burden? My husband was not feeling sick at the time of his diagnosis, so basically it's been the chemo that has made him feel ill more than his cancer. It's true that for my husband Zel started helping immediately and Dabrafenib is, I believe, very similar to Zel, if not the same. I have read stories on here posted by some who were suffering from a lot of pain caused by their tumor burden and then a few days following the beginning of treatment they started to "feel better" , so that is true for many.
I hope that you are doing well so far on the combo, please keep me updated on your progress, if you don't mind. I will be praying for you Mat. Please know that you are not alone.
Love and blessings to you and yours,
Gina Rangel
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- August 8, 2013 at 10:39 am
Hi Mat, I am very sorry that you too were diagnosed with this dreaded cancer! It is very overwhelming to get such devastating news, we know how you feel. My husband is doing well so far and the side effects have been minimal. He has a little fatigue and some over all body aches and he has had only one instance of nausea. Although, today he started getting one of the same more severe and painful side effects that he had on Zel of extremely sore feet (soles) which hurt him when he walks and he had to use an ice pack several times for relief. It should be noted that he is/was still able to walk and when he got this side effect on Zel the pain was so severe that he could not walk at all. With that said, it appears that for him the side effects are proving to be fewer and less severe, at least so far!
Will this be your first treatment of any kind for your melanoma? Are you already feeling the effects of your tumor burden? My husband was not feeling sick at the time of his diagnosis, so basically it's been the chemo that has made him feel ill more than his cancer. It's true that for my husband Zel started helping immediately and Dabrafenib is, I believe, very similar to Zel, if not the same. I have read stories on here posted by some who were suffering from a lot of pain caused by their tumor burden and then a few days following the beginning of treatment they started to "feel better" , so that is true for many.
I hope that you are doing well so far on the combo, please keep me updated on your progress, if you don't mind. I will be praying for you Mat. Please know that you are not alone.
Love and blessings to you and yours,
Gina Rangel
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- August 8, 2013 at 10:41 pm
Gina, thanks for your reply. Yes, the Tafinlar-Mekinist combination is my first treatment following diagnosis. This is a recurrence 10 years after I had a relatively thin melanoma removed (with wide incision, sentinel lymph node testing, PET scan, etc.). I had been pursuing the TIL treatment at NIH, but it was determined that the tumor burden in my liver needed to be addressed first. Fortunately, I was BRAF 600 positive.
I've now been on the combo for 7 days. I know that I'm early in the cycle for side effects. So far, they are very manageable–just some hip soreness for me. I had two relatively small subcutaneous tumors–one has totally disappeared and the other is a small fraction of the size it was just 7 days ago. I also think I have that "feel better" feeling–hard to tell. Like your husband, I was relatively asymptomatic at diagnosis (just went for my routine visit). I have been feeling some liver sensation/pain over the past few weeks and that might be improving (hard to tell). On the other hand, I also developed a bone lesion in my jaw (causing numbness) and that has not resolved (yet). I have a blood test for liver function tomorrow, so that will be a big test. If things go well, I'll think about starting a new thread here–because this combo may be truly amazing (as others have said). In so many words, I was effectively told last week that this "needs" to work for me–if you know what I mean.
I wish you and your husband the best and hope that he has an easier time with the side effects. I'm married with young children (including a baby born only a month before my diagnosis), so I certainly know what you're going through.
Thanks again, Mat
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- August 8, 2013 at 10:41 pm
Gina, thanks for your reply. Yes, the Tafinlar-Mekinist combination is my first treatment following diagnosis. This is a recurrence 10 years after I had a relatively thin melanoma removed (with wide incision, sentinel lymph node testing, PET scan, etc.). I had been pursuing the TIL treatment at NIH, but it was determined that the tumor burden in my liver needed to be addressed first. Fortunately, I was BRAF 600 positive.
I've now been on the combo for 7 days. I know that I'm early in the cycle for side effects. So far, they are very manageable–just some hip soreness for me. I had two relatively small subcutaneous tumors–one has totally disappeared and the other is a small fraction of the size it was just 7 days ago. I also think I have that "feel better" feeling–hard to tell. Like your husband, I was relatively asymptomatic at diagnosis (just went for my routine visit). I have been feeling some liver sensation/pain over the past few weeks and that might be improving (hard to tell). On the other hand, I also developed a bone lesion in my jaw (causing numbness) and that has not resolved (yet). I have a blood test for liver function tomorrow, so that will be a big test. If things go well, I'll think about starting a new thread here–because this combo may be truly amazing (as others have said). In so many words, I was effectively told last week that this "needs" to work for me–if you know what I mean.
I wish you and your husband the best and hope that he has an easier time with the side effects. I'm married with young children (including a baby born only a month before my diagnosis), so I certainly know what you're going through.
Thanks again, Mat
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- August 9, 2013 at 9:51 am
Hi Mat, no problem. I am glad to hear that you are doing okay so far on the combo! I have a good feeling about it and believe that my husband is going to continue to see a reduction in his tumor load with this treatment and I pray for the same result for you. I know what you mean about how the combo "needs" to work for you. With young children and a wife you have so many reasons to live, it will work for you and you will beat this, you have to believe that with all your heart!
I must share with you that I believe that my husband is doing so well not only because of his treatment but because of the many other changes that we made since his diagnosis . We immediately cut out all processed foods and refined sugar, he now eats mostly all organic foods and I serve him fresh vegetable drinks that I prepare in a "Juicer" daily. In addition, he takes several supplements and hemp oil. Have you heard of Rick Simpson and "the cure?" If not, Google and watch his video, my husband has been taking it for two months. If you want more details, I will gladly give them to you in a private message. His oncologist is aware of this and does not oppose it.
Again, praying for you and your family. Stay strong dear friend.
Gina
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- August 9, 2013 at 9:51 am
Hi Mat, no problem. I am glad to hear that you are doing okay so far on the combo! I have a good feeling about it and believe that my husband is going to continue to see a reduction in his tumor load with this treatment and I pray for the same result for you. I know what you mean about how the combo "needs" to work for you. With young children and a wife you have so many reasons to live, it will work for you and you will beat this, you have to believe that with all your heart!
I must share with you that I believe that my husband is doing so well not only because of his treatment but because of the many other changes that we made since his diagnosis . We immediately cut out all processed foods and refined sugar, he now eats mostly all organic foods and I serve him fresh vegetable drinks that I prepare in a "Juicer" daily. In addition, he takes several supplements and hemp oil. Have you heard of Rick Simpson and "the cure?" If not, Google and watch his video, my husband has been taking it for two months. If you want more details, I will gladly give them to you in a private message. His oncologist is aware of this and does not oppose it.
Again, praying for you and your family. Stay strong dear friend.
Gina
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