› Forums › General Melanoma Community › Husband stage IV w/brain, lung, and bone mets- could use some encouragement
- This topic has 24 replies, 5 voices, and was last updated 9 years, 1 month ago by
GAngel.
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- March 26, 2015 at 2:23 am
Hi y’all, I’ve been browsing this board for a few months and am so thankful it exists. Hoping you guys can weigh in and lift my spirits.
A little background: My husband Jim is 34, Army National Guard veteran – 14 years of service, 2 tours overseas to Afghanistan and Iraq. He was diagnosed on 12/23/14 as stage IV with multiple brain, lungs, and bone mets (in his lower spine, left hip and femur) BRAF and PTEN positive. Primary diagnosis was a mole on his right temple in 2007, that was removed.
He had SRS in January to 11 lesions in his brain, then another MRI revealed there were 20+, so he had whole brain radiation in February. He also took Temodar during this time. After a couple weeks break, he started the braf/mek combo on 3/2. The side effects were mild until recently. He now has a nightly low fever, chills, headache, loss of appetite and fatigue. It seems to be getting worse and I’m so worried. Smoking pot doesn’t help the appetite anymore and he just started cannabis oil 5 days ago.
I should add we’ve only been married 19 months and I’m 25 weeks pregnant with our first child. This has been so hard to deal with but lately I’ve been having a really hard time, especially now that I can tell he feels so bad. I hate this disease so much and what it’s doing to him and our life. Any positivity would be appreciated 🙂
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- March 26, 2015 at 2:26 am
Forgot to say he gets treated at home in Louisville, KY by the VA but main care is overseen and ordered by MD Anderson.-
- March 26, 2015 at 3:13 am
Hi,
Hang in there… lots of treatments out there. My brother is stage IV and BRAF positive as well. He has had huge success with Tafinlar and Mekinist (BRAF/MEK) combo drugs for those that are BRAF positive. It reduced his tumor load substantially. Five pills a day, targeted therapy and now FDA approved. There is also immunothery.( Yervoy, PD1) .What treatment is your husband on?
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- March 26, 2015 at 3:13 am
Hi,
Hang in there… lots of treatments out there. My brother is stage IV and BRAF positive as well. He has had huge success with Tafinlar and Mekinist (BRAF/MEK) combo drugs for those that are BRAF positive. It reduced his tumor load substantially. Five pills a day, targeted therapy and now FDA approved. There is also immunothery.( Yervoy, PD1) .What treatment is your husband on?
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- March 26, 2015 at 3:13 am
Hi,
Hang in there… lots of treatments out there. My brother is stage IV and BRAF positive as well. He has had huge success with Tafinlar and Mekinist (BRAF/MEK) combo drugs for those that are BRAF positive. It reduced his tumor load substantially. Five pills a day, targeted therapy and now FDA approved. There is also immunothery.( Yervoy, PD1) .What treatment is your husband on?
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- March 26, 2015 at 3:18 am
So sorry, I didnt see that he is on the BRAF/MEK combo. Did he have a scan yet to see if it is working? What about asking about the immunotherapy PD1 or Yervoy. Should he be smoking pot or using the oil while on the drugs, they dont really know enough about compatibility with this drug because it is so new and suggest folks dont take supplements for that reason.
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- March 26, 2015 at 3:18 am
So sorry, I didnt see that he is on the BRAF/MEK combo. Did he have a scan yet to see if it is working? What about asking about the immunotherapy PD1 or Yervoy. Should he be smoking pot or using the oil while on the drugs, they dont really know enough about compatibility with this drug because it is so new and suggest folks dont take supplements for that reason.
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- March 26, 2015 at 3:18 am
So sorry, I didnt see that he is on the BRAF/MEK combo. Did he have a scan yet to see if it is working? What about asking about the immunotherapy PD1 or Yervoy. Should he be smoking pot or using the oil while on the drugs, they dont really know enough about compatibility with this drug because it is so new and suggest folks dont take supplements for that reason.
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- March 26, 2015 at 7:04 am
My thoughts are with you and I hope something I write give's you hope.
— I wrote something pretty long only to have it disappear. Sorry this will be brief…. —–
My Mom was stage IV had Gamma Knife Radiation for 8 brain tumors and then Yervoy 4 days later. She is the poster child for this combination. – She was BRAF + and PD1 +. But we chose Yervoy and Gamma Knife Radiation over BRAF because there are studies that show this combination within a short period of time has very good long term resutls.
Long story short, she had:
– 25 brain tumors treated with gamma knife radiation and today they doctors can only find 4 treated tumors (last SRS was 4/15/14 for 17, first was 12/9/13 for 8 (Beverly Hills doctor missed 1).
– 18 tumors on scalp to start with. None remain
– 6 tumors in her trunks. All have shrunk with the largest at .5mm and smallest at .3mm
– 1 tumor on her next the size of a birds egg. It disappeared in the first 1 or so.
No cognitive issues. She did get colitis, but other than that she is as health as a horse and just had her 79th birthday and is on a cruise to the Bahama's.
She started taking 500mg CBD's before gamma knife and is still taking them along with 3500mg turmeric.
Her doctor is Dr. Mike Wong from USC and he happened to send me a invite tonight for a online talk about Melanoma this weekend. He is a speaker at the event. See below:
Here is the info to register for the webinar: https://www.zoom.us/webinar/register/188dcfff703e5912d746f627e8486654
Here is inforamation on the event:Please read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
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- March 26, 2015 at 7:04 am
My thoughts are with you and I hope something I write give's you hope.
— I wrote something pretty long only to have it disappear. Sorry this will be brief…. —–
My Mom was stage IV had Gamma Knife Radiation for 8 brain tumors and then Yervoy 4 days later. She is the poster child for this combination. – She was BRAF + and PD1 +. But we chose Yervoy and Gamma Knife Radiation over BRAF because there are studies that show this combination within a short period of time has very good long term resutls.
Long story short, she had:
– 25 brain tumors treated with gamma knife radiation and today they doctors can only find 4 treated tumors (last SRS was 4/15/14 for 17, first was 12/9/13 for 8 (Beverly Hills doctor missed 1).
– 18 tumors on scalp to start with. None remain
– 6 tumors in her trunks. All have shrunk with the largest at .5mm and smallest at .3mm
– 1 tumor on her next the size of a birds egg. It disappeared in the first 1 or so.
No cognitive issues. She did get colitis, but other than that she is as health as a horse and just had her 79th birthday and is on a cruise to the Bahama's.
She started taking 500mg CBD's before gamma knife and is still taking them along with 3500mg turmeric.
Her doctor is Dr. Mike Wong from USC and he happened to send me a invite tonight for a online talk about Melanoma this weekend. He is a speaker at the event. See below:
Here is the info to register for the webinar: https://www.zoom.us/webinar/register/188dcfff703e5912d746f627e8486654
Here is inforamation on the event:Please read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
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- March 26, 2015 at 1:25 pm
Thank you so much for replying and I appreciate all the articles!
In regards to the Marijuana Drastically Shrinks Aggressive Form Of Brain Cancer, New Study Finds article, I really got hopeful reading "They found that the tumors were best treated by low doses of both THC and CBD that, when used in concert, made the tumors more receptive to radiation treatment" Although it doesn't specify whether they used WBRT or SRS, Jim has had both and is taking the oil everyday. I am very hopeful the oil is just what he needs and works.
The doctor's thought was he needed the braf/mek combo first to get disease under control because it had grown quickly. He goes back for scans April 25th and the doctor has already said Ipi is the next step, when the combo shows it's no longer working.
It's just so hard to watch the one you love most, be sick. I know side effects are part of the process but I hate it for him. I just want him to be well and get rid of this but I know it's going to be a long process. Some days I cope well and some days I don't.
-Kristin
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- March 26, 2015 at 1:25 pm
Thank you so much for replying and I appreciate all the articles!
In regards to the Marijuana Drastically Shrinks Aggressive Form Of Brain Cancer, New Study Finds article, I really got hopeful reading "They found that the tumors were best treated by low doses of both THC and CBD that, when used in concert, made the tumors more receptive to radiation treatment" Although it doesn't specify whether they used WBRT or SRS, Jim has had both and is taking the oil everyday. I am very hopeful the oil is just what he needs and works.
The doctor's thought was he needed the braf/mek combo first to get disease under control because it had grown quickly. He goes back for scans April 25th and the doctor has already said Ipi is the next step, when the combo shows it's no longer working.
It's just so hard to watch the one you love most, be sick. I know side effects are part of the process but I hate it for him. I just want him to be well and get rid of this but I know it's going to be a long process. Some days I cope well and some days I don't.
-Kristin
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- March 26, 2015 at 1:25 pm
Thank you so much for replying and I appreciate all the articles!
In regards to the Marijuana Drastically Shrinks Aggressive Form Of Brain Cancer, New Study Finds article, I really got hopeful reading "They found that the tumors were best treated by low doses of both THC and CBD that, when used in concert, made the tumors more receptive to radiation treatment" Although it doesn't specify whether they used WBRT or SRS, Jim has had both and is taking the oil everyday. I am very hopeful the oil is just what he needs and works.
The doctor's thought was he needed the braf/mek combo first to get disease under control because it had grown quickly. He goes back for scans April 25th and the doctor has already said Ipi is the next step, when the combo shows it's no longer working.
It's just so hard to watch the one you love most, be sick. I know side effects are part of the process but I hate it for him. I just want him to be well and get rid of this but I know it's going to be a long process. Some days I cope well and some days I don't.
-Kristin
-
- March 26, 2015 at 7:04 am
My thoughts are with you and I hope something I write give's you hope.
— I wrote something pretty long only to have it disappear. Sorry this will be brief…. —–
My Mom was stage IV had Gamma Knife Radiation for 8 brain tumors and then Yervoy 4 days later. She is the poster child for this combination. – She was BRAF + and PD1 +. But we chose Yervoy and Gamma Knife Radiation over BRAF because there are studies that show this combination within a short period of time has very good long term resutls.
Long story short, she had:
– 25 brain tumors treated with gamma knife radiation and today they doctors can only find 4 treated tumors (last SRS was 4/15/14 for 17, first was 12/9/13 for 8 (Beverly Hills doctor missed 1).
– 18 tumors on scalp to start with. None remain
– 6 tumors in her trunks. All have shrunk with the largest at .5mm and smallest at .3mm
– 1 tumor on her next the size of a birds egg. It disappeared in the first 1 or so.
No cognitive issues. She did get colitis, but other than that she is as health as a horse and just had her 79th birthday and is on a cruise to the Bahama's.
She started taking 500mg CBD's before gamma knife and is still taking them along with 3500mg turmeric.
Her doctor is Dr. Mike Wong from USC and he happened to send me a invite tonight for a online talk about Melanoma this weekend. He is a speaker at the event. See below:
Here is the info to register for the webinar: https://www.zoom.us/webinar/register/188dcfff703e5912d746f627e8486654
Here is inforamation on the event:Please read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
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- April 8, 2015 at 8:44 am
Hello..I'm sorry to say that I know what you are going through because my husband also has stage 4 melanoma, or I should say "had" I suppose because he has been NED for over a year now. He was diagnosed in Feb. of 2013 and although he did not have brain mets he had over 15 tumors in his liver and it was also in his lymph node in his left groin. He immediately started taking cannabis oil and still takes it to this day and it has never caused any adverse reactions when taken with the braf/mekinist combo that he has been on (intermittently) since July of 2013. As stated, my husband currently has no evidence of disease and is successfully beating melanoma and winning his battle against it.
I just wanted to give you some encouraging news about our success with the above and tell you that although your husband will suffer some side effects…they can be managed and may even diminish the longer he is on the combo. It's not an easy road but hang in there because it will get better. Try to be strong for your husband as best you can but remember to take care of yourself as well especially because of your little one growing inside you! Your husband has so much to live for and remind him of that daily.
Also, I highly recommend daily juicing and healthy eating. We eat organically grown fruits and vegetables and severely limit refined sugar, processed foods, and most dairy. Last but not least…pray…and don't stop.
Best of luck. I will be praying for you and your husband.
Blessings,
Gina
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- April 8, 2015 at 8:44 am
Hello..I'm sorry to say that I know what you are going through because my husband also has stage 4 melanoma, or I should say "had" I suppose because he has been NED for over a year now. He was diagnosed in Feb. of 2013 and although he did not have brain mets he had over 15 tumors in his liver and it was also in his lymph node in his left groin. He immediately started taking cannabis oil and still takes it to this day and it has never caused any adverse reactions when taken with the braf/mekinist combo that he has been on (intermittently) since July of 2013. As stated, my husband currently has no evidence of disease and is successfully beating melanoma and winning his battle against it.
I just wanted to give you some encouraging news about our success with the above and tell you that although your husband will suffer some side effects…they can be managed and may even diminish the longer he is on the combo. It's not an easy road but hang in there because it will get better. Try to be strong for your husband as best you can but remember to take care of yourself as well especially because of your little one growing inside you! Your husband has so much to live for and remind him of that daily.
Also, I highly recommend daily juicing and healthy eating. We eat organically grown fruits and vegetables and severely limit refined sugar, processed foods, and most dairy. Last but not least…pray…and don't stop.
Best of luck. I will be praying for you and your husband.
Blessings,
Gina
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- April 8, 2015 at 8:44 am
Hello..I'm sorry to say that I know what you are going through because my husband also has stage 4 melanoma, or I should say "had" I suppose because he has been NED for over a year now. He was diagnosed in Feb. of 2013 and although he did not have brain mets he had over 15 tumors in his liver and it was also in his lymph node in his left groin. He immediately started taking cannabis oil and still takes it to this day and it has never caused any adverse reactions when taken with the braf/mekinist combo that he has been on (intermittently) since July of 2013. As stated, my husband currently has no evidence of disease and is successfully beating melanoma and winning his battle against it.
I just wanted to give you some encouraging news about our success with the above and tell you that although your husband will suffer some side effects…they can be managed and may even diminish the longer he is on the combo. It's not an easy road but hang in there because it will get better. Try to be strong for your husband as best you can but remember to take care of yourself as well especially because of your little one growing inside you! Your husband has so much to live for and remind him of that daily.
Also, I highly recommend daily juicing and healthy eating. We eat organically grown fruits and vegetables and severely limit refined sugar, processed foods, and most dairy. Last but not least…pray…and don't stop.
Best of luck. I will be praying for you and your husband.
Blessings,
Gina
Tagged: cutaneous melanoma
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