› Forums › General Melanoma Community › Another clean scan for Rudy!
- This topic has 36 replies, 6 voices, and was last updated 9 years, 5 months ago by
enatti.
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- October 28, 2014 at 6:01 am
Hello all…just wanted to share our great news that Rudy continues to remain NED. He is still on the Tafinlar/mekinist combo taking it intermittently as well as taking cannibas oil daily. We are so thankful and blessed. We want to encourage all of you to keep on fighting and never lose hope. Keeping positive is so important.
God bless you all…we are praying for you.
Gina and Rudy Rangel
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- October 28, 2014 at 9:51 am
Great news!!!
How large was the tumor load at the start of the treatment and how soon did you reach NED?
My wife's on the combo since June and taking cannabis oil as well… so far positive scans, let's hope we'll join you in being NED soon 🙂
Good luck!
Rick
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- October 31, 2014 at 9:55 am
Hi Rick.
At the start of treatment in March of 2013 Rudy had 15+ tumors in his liver and the cancer was in his left groin lymph node. He was on Zelboraf for a couple of months and it was working and shrinking all tumors when he was switched to the Dabrafenib/MEK combo in July of 2013. Rudy's scan in September of 2013 revealed that there was no longer any evidence of disease in liver and and there had been a significant decrease in the size of his left groin lymph node but it still showed slight disease. In November 2013 he got the official declaration of NED whole body. So the short answer, lol, is that it took approximately 8 months to reach NED. He's remained NED nearly a year now.
That is great to hear that your wife is taking cannabis oil…we believe that it's helped Rudy. We will be praying for you both and asking that she reach NED real soon!!
Blessings and good luck to you!
Gina
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- October 31, 2014 at 9:55 am
Hi Rick.
At the start of treatment in March of 2013 Rudy had 15+ tumors in his liver and the cancer was in his left groin lymph node. He was on Zelboraf for a couple of months and it was working and shrinking all tumors when he was switched to the Dabrafenib/MEK combo in July of 2013. Rudy's scan in September of 2013 revealed that there was no longer any evidence of disease in liver and and there had been a significant decrease in the size of his left groin lymph node but it still showed slight disease. In November 2013 he got the official declaration of NED whole body. So the short answer, lol, is that it took approximately 8 months to reach NED. He's remained NED nearly a year now.
That is great to hear that your wife is taking cannabis oil…we believe that it's helped Rudy. We will be praying for you both and asking that she reach NED real soon!!
Blessings and good luck to you!
Gina
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- October 31, 2014 at 9:55 am
Hi Rick.
At the start of treatment in March of 2013 Rudy had 15+ tumors in his liver and the cancer was in his left groin lymph node. He was on Zelboraf for a couple of months and it was working and shrinking all tumors when he was switched to the Dabrafenib/MEK combo in July of 2013. Rudy's scan in September of 2013 revealed that there was no longer any evidence of disease in liver and and there had been a significant decrease in the size of his left groin lymph node but it still showed slight disease. In November 2013 he got the official declaration of NED whole body. So the short answer, lol, is that it took approximately 8 months to reach NED. He's remained NED nearly a year now.
That is great to hear that your wife is taking cannabis oil…we believe that it's helped Rudy. We will be praying for you both and asking that she reach NED real soon!!
Blessings and good luck to you!
Gina
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- October 28, 2014 at 9:51 am
Great news!!!
How large was the tumor load at the start of the treatment and how soon did you reach NED?
My wife's on the combo since June and taking cannabis oil as well… so far positive scans, let's hope we'll join you in being NED soon 🙂
Good luck!
Rick
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- October 28, 2014 at 9:51 am
Great news!!!
How large was the tumor load at the start of the treatment and how soon did you reach NED?
My wife's on the combo since June and taking cannabis oil as well… so far positive scans, let's hope we'll join you in being NED soon 🙂
Good luck!
Rick
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- October 28, 2014 at 1:29 pm
Rudy/Gina, great news! (I'm about to start my 16th month on the combo. Not NED, but doing well.)
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- October 28, 2014 at 8:01 pm
Great news, Gina! I wouldn't be surprised if the cannabis oil is helping quite a bit. Does your doctor know he is taking it? Rudy's good results might end up skewing the results of the clinical trial if it turns out that it's the cannabis oil doing the heavy lifting rather than the combo. But I certainly would not advise him to stop taking it. I'd take it myself if I could get my hands on it.
Cheers,
Maggie
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- October 28, 2014 at 8:01 pm
Great news, Gina! I wouldn't be surprised if the cannabis oil is helping quite a bit. Does your doctor know he is taking it? Rudy's good results might end up skewing the results of the clinical trial if it turns out that it's the cannabis oil doing the heavy lifting rather than the combo. But I certainly would not advise him to stop taking it. I'd take it myself if I could get my hands on it.
Cheers,
Maggie
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- October 28, 2014 at 8:01 pm
Great news, Gina! I wouldn't be surprised if the cannabis oil is helping quite a bit. Does your doctor know he is taking it? Rudy's good results might end up skewing the results of the clinical trial if it turns out that it's the cannabis oil doing the heavy lifting rather than the combo. But I certainly would not advise him to stop taking it. I'd take it myself if I could get my hands on it.
Cheers,
Maggie
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- October 31, 2014 at 10:14 am
Hi Maggie.
Thank you! I would not be surprised either! Yes, Rudy's doctor does know about the cannabis oil and has no issue with him taking it. Rudy isn't in a clinical trial as he started the combo after it was FDA approved…his doctor prescribed it to him days after it was approved and we waited for a short period until it actually became available.
If you don't mind me asking…are you located within the United States?
Blessings,
Gina
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- October 31, 2014 at 10:14 am
Hi Maggie.
Thank you! I would not be surprised either! Yes, Rudy's doctor does know about the cannabis oil and has no issue with him taking it. Rudy isn't in a clinical trial as he started the combo after it was FDA approved…his doctor prescribed it to him days after it was approved and we waited for a short period until it actually became available.
If you don't mind me asking…are you located within the United States?
Blessings,
Gina
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- November 1, 2014 at 6:29 am
Hi Gina,
I had just assumed he was in a trial as I "interviewed" the same doctor that you are using and he wanted to put me in a trial (I declined and I am seeing a different oncologist). So, yes, I am in the US. Southern California. I have been taking a strictly alternative approach so far and my 5 lung mets have been fairly stable for the past 9 months. Not shrinking, but not growing much and not spreading either. Of course, I'd prefer shrinkage but my current protocol is pretty cheap so I could maintain it for a long time. Honestly, I wish I could just legally grow the dumb plant in my backyard. I have never in my life tried marijuana so I wouldn't have the slightest idea how to evaluate quality. Is it usually organic? Is that a stupid queston? I wouldn't want pesticides used or chemical fertilizer. Maybe I should just try to find a dispensary. It just all still feels so borderline criminal and stigmatized and I'm worried about being ripped off the way my auto mechanic rips me off because I know nothing about cars. I just really want it all to be completely legal and out in the open. Is it in California? I mean, can I walk into a dispensary and buy quality cannabis oil?? And not worry that someone will try to put me in jail? Just not clear on the legal ins and outs here.
I'm glad you guys are having good success with it.
Cheers – Maggie
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- November 5, 2014 at 7:48 am
Hi Maggie,
I can understand your concerns but it is completely legal in california if a doctor precribes it to you. You would have no problem getting a prescription given your diagnosis. Rudy grows his own (which is legal) to ensure that it is organic and pesticide free. I don't know that you can buy the oil that you need because there is a particular way to make it. Where in california are you? I assume you are close to us if you consulted with Dr. Fruehauf.
Blessings,
Gina
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- November 5, 2014 at 7:48 am
Hi Maggie,
I can understand your concerns but it is completely legal in california if a doctor precribes it to you. You would have no problem getting a prescription given your diagnosis. Rudy grows his own (which is legal) to ensure that it is organic and pesticide free. I don't know that you can buy the oil that you need because there is a particular way to make it. Where in california are you? I assume you are close to us if you consulted with Dr. Fruehauf.
Blessings,
Gina
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- November 5, 2014 at 7:48 am
Hi Maggie,
I can understand your concerns but it is completely legal in california if a doctor precribes it to you. You would have no problem getting a prescription given your diagnosis. Rudy grows his own (which is legal) to ensure that it is organic and pesticide free. I don't know that you can buy the oil that you need because there is a particular way to make it. Where in california are you? I assume you are close to us if you consulted with Dr. Fruehauf.
Blessings,
Gina
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- November 8, 2014 at 2:01 am
Hi GAngel,
At any point did your husband have to lay off the Taf/Mek combo because of elevated liver function numbers? My father (stage 4, tumor under his right arm and mets on liver) has been on Taf/Mek since late Sept with great initial results but the effects tailed off through October until he was ordered off them in late October to allow his liver to heal.
We have been steadily dosing my father with Cannabis Oil since early October but apparently not as hard as we probably should.
After initial positive results it seems as if the tumor under his right arm is growing/getting harder. He has been off the Taf/Mek drugs for ten days now so could his melanoma be mounting a counter attack?
I know we are relatively early on in his dosing of Cannabis Oil but we are worried. For some reason we are losing traction.
Have you seen this with Rudy? Do you have anything in your experience from which we can glean?
Thanking you in advance.
Ermin
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- November 8, 2014 at 2:01 am
Hi GAngel,
At any point did your husband have to lay off the Taf/Mek combo because of elevated liver function numbers? My father (stage 4, tumor under his right arm and mets on liver) has been on Taf/Mek since late Sept with great initial results but the effects tailed off through October until he was ordered off them in late October to allow his liver to heal.
We have been steadily dosing my father with Cannabis Oil since early October but apparently not as hard as we probably should.
After initial positive results it seems as if the tumor under his right arm is growing/getting harder. He has been off the Taf/Mek drugs for ten days now so could his melanoma be mounting a counter attack?
I know we are relatively early on in his dosing of Cannabis Oil but we are worried. For some reason we are losing traction.
Have you seen this with Rudy? Do you have anything in your experience from which we can glean?
Thanking you in advance.
Ermin
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- November 8, 2014 at 2:01 am
Hi GAngel,
At any point did your husband have to lay off the Taf/Mek combo because of elevated liver function numbers? My father (stage 4, tumor under his right arm and mets on liver) has been on Taf/Mek since late Sept with great initial results but the effects tailed off through October until he was ordered off them in late October to allow his liver to heal.
We have been steadily dosing my father with Cannabis Oil since early October but apparently not as hard as we probably should.
After initial positive results it seems as if the tumor under his right arm is growing/getting harder. He has been off the Taf/Mek drugs for ten days now so could his melanoma be mounting a counter attack?
I know we are relatively early on in his dosing of Cannabis Oil but we are worried. For some reason we are losing traction.
Have you seen this with Rudy? Do you have anything in your experience from which we can glean?
Thanking you in advance.
Ermin
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- November 10, 2014 at 4:28 pm
Hi Rick,
My father's liver function numbers were abnormally high. Apparently they were in the 500s when they should be in the 100s. I don't know which or if all of the liver function numbers were high. That's how they were interpreted to me. Doctor said this was a potential side effect of the drug and that he had patients who had to lay off for two to three week stints before.
My father was on Taf/Mek from 9/25 until 10/28. Two 75 mg pills of Tafinlar twice a day and one 2 mg tablet of Mekinist once per day.
The medicines seemed to have been working until we found out about his liver function. Now we are waiting for the liver to get better (hopefully it does soon!) because his tumor is coming back with a vengance (only about 13 days off the drugs).
He has been on about 0.14 grams of cannabis oil per day for about a week now and lesser amounts per day since 10/4. Hard to increase the dose because he is already fatigued and traumatized physically, psychologically and emotionally.
Big appointment with the oncologist on Wednesday.
By the way, along with the liver inflammation, he also has kidney stones and a stent which will hopefully be removed on Friday.
He has had flu like symptoms the past four days, his tumor increasing from a soft egg to a hard fist, reducing his arm's range of motion significantly. Needless to say we are very worried.
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- November 10, 2014 at 4:28 pm
Hi Rick,
My father's liver function numbers were abnormally high. Apparently they were in the 500s when they should be in the 100s. I don't know which or if all of the liver function numbers were high. That's how they were interpreted to me. Doctor said this was a potential side effect of the drug and that he had patients who had to lay off for two to three week stints before.
My father was on Taf/Mek from 9/25 until 10/28. Two 75 mg pills of Tafinlar twice a day and one 2 mg tablet of Mekinist once per day.
The medicines seemed to have been working until we found out about his liver function. Now we are waiting for the liver to get better (hopefully it does soon!) because his tumor is coming back with a vengance (only about 13 days off the drugs).
He has been on about 0.14 grams of cannabis oil per day for about a week now and lesser amounts per day since 10/4. Hard to increase the dose because he is already fatigued and traumatized physically, psychologically and emotionally.
Big appointment with the oncologist on Wednesday.
By the way, along with the liver inflammation, he also has kidney stones and a stent which will hopefully be removed on Friday.
He has had flu like symptoms the past four days, his tumor increasing from a soft egg to a hard fist, reducing his arm's range of motion significantly. Needless to say we are very worried.
-
- November 10, 2014 at 4:28 pm
Hi Rick,
My father's liver function numbers were abnormally high. Apparently they were in the 500s when they should be in the 100s. I don't know which or if all of the liver function numbers were high. That's how they were interpreted to me. Doctor said this was a potential side effect of the drug and that he had patients who had to lay off for two to three week stints before.
My father was on Taf/Mek from 9/25 until 10/28. Two 75 mg pills of Tafinlar twice a day and one 2 mg tablet of Mekinist once per day.
The medicines seemed to have been working until we found out about his liver function. Now we are waiting for the liver to get better (hopefully it does soon!) because his tumor is coming back with a vengance (only about 13 days off the drugs).
He has been on about 0.14 grams of cannabis oil per day for about a week now and lesser amounts per day since 10/4. Hard to increase the dose because he is already fatigued and traumatized physically, psychologically and emotionally.
Big appointment with the oncologist on Wednesday.
By the way, along with the liver inflammation, he also has kidney stones and a stent which will hopefully be removed on Friday.
He has had flu like symptoms the past four days, his tumor increasing from a soft egg to a hard fist, reducing his arm's range of motion significantly. Needless to say we are very worried.
-
- November 1, 2014 at 6:29 am
Hi Gina,
I had just assumed he was in a trial as I "interviewed" the same doctor that you are using and he wanted to put me in a trial (I declined and I am seeing a different oncologist). So, yes, I am in the US. Southern California. I have been taking a strictly alternative approach so far and my 5 lung mets have been fairly stable for the past 9 months. Not shrinking, but not growing much and not spreading either. Of course, I'd prefer shrinkage but my current protocol is pretty cheap so I could maintain it for a long time. Honestly, I wish I could just legally grow the dumb plant in my backyard. I have never in my life tried marijuana so I wouldn't have the slightest idea how to evaluate quality. Is it usually organic? Is that a stupid queston? I wouldn't want pesticides used or chemical fertilizer. Maybe I should just try to find a dispensary. It just all still feels so borderline criminal and stigmatized and I'm worried about being ripped off the way my auto mechanic rips me off because I know nothing about cars. I just really want it all to be completely legal and out in the open. Is it in California? I mean, can I walk into a dispensary and buy quality cannabis oil?? And not worry that someone will try to put me in jail? Just not clear on the legal ins and outs here.
I'm glad you guys are having good success with it.
Cheers – Maggie
-
- November 1, 2014 at 6:29 am
Hi Gina,
I had just assumed he was in a trial as I "interviewed" the same doctor that you are using and he wanted to put me in a trial (I declined and I am seeing a different oncologist). So, yes, I am in the US. Southern California. I have been taking a strictly alternative approach so far and my 5 lung mets have been fairly stable for the past 9 months. Not shrinking, but not growing much and not spreading either. Of course, I'd prefer shrinkage but my current protocol is pretty cheap so I could maintain it for a long time. Honestly, I wish I could just legally grow the dumb plant in my backyard. I have never in my life tried marijuana so I wouldn't have the slightest idea how to evaluate quality. Is it usually organic? Is that a stupid queston? I wouldn't want pesticides used or chemical fertilizer. Maybe I should just try to find a dispensary. It just all still feels so borderline criminal and stigmatized and I'm worried about being ripped off the way my auto mechanic rips me off because I know nothing about cars. I just really want it all to be completely legal and out in the open. Is it in California? I mean, can I walk into a dispensary and buy quality cannabis oil?? And not worry that someone will try to put me in jail? Just not clear on the legal ins and outs here.
I'm glad you guys are having good success with it.
Cheers – Maggie
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- October 31, 2014 at 10:14 am
Hi Maggie.
Thank you! I would not be surprised either! Yes, Rudy's doctor does know about the cannabis oil and has no issue with him taking it. Rudy isn't in a clinical trial as he started the combo after it was FDA approved…his doctor prescribed it to him days after it was approved and we waited for a short period until it actually became available.
If you don't mind me asking…are you located within the United States?
Blessings,
Gina
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