› Forums › General Melanoma Community › Stage 4 with a growing tumour.
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Squash.
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- September 9, 2014 at 10:12 pm
Hello All,
I was diagnosed with stage 3C melanoma in Octoboer 2009. I did all of the conventional treatment at that time. In October of 2012 it returned to my pancreas. It started at 2cm in size and is now 6cm. It is at the head of the pancreas which makes surgery difficult. They would have to do a whipple procedure. I'm not sure that's where I want to go.
Since the original treatment I chose to go the alternative path and have done many therapies. The melanoma hasn't spread any further but the tumour on the pancreas continues to grow.
I now have to make some decisions on how I will proceed. I will likely have to try a BRAF inhibitor (I am BRAF positive) or do a clinical trial that involves a combination of BRAF inhibitors. Anti-PD1 is only offered on compassionate use in Canada and I have to fail a BRAF inhibitor before they would give it to me.
I feel completely lost and am not sure what to do. I'm looking for a little guidance. I am 35 years old with 2 young daughters. I have to continue fighting.
Cheers
Mark
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- September 10, 2014 at 12:34 am
Mark,
Sorry this disease came back after leaving you alone for a few years.
As you say — getting help to navigate the maze. Were your docs from your first encounter with melanoma — and/or that you're seeing now — melanoma specialists? One thing almost everyone will agree on here, is to get seen by an oncologist specializing in melanoma. And once you do that, get a sccond opinion from another as well. The good ones can help juggle the pluses and minues of each treatment path with you. Try the Treatment Center Finder here on this site, for U.S. centers at least.
Combos — I saw one prominent melanoma oncologist speak (Dr. Jeffery Weber) a few months back at an MRF event. Tim from MRF was there too. Dr. Weber said if he had to choose for himself, he would go for a combo therapy. For example, he said numbers-wise, people tend to get longer response on the BRAF/MEK combo as compared to the BRAF drug on its own.
Clinical Trials — Like you say, there are also clinical trials. I'm in one that combines two immunotherapy drugs. Hearing Dr. Weber's talk on combo drugs definitely influenced my search for my current treatment. My trial doesn't have a placebo arm — I think that's almost always the case for early trial phases (mine is phase Ib). A drug combo that's getting a lot of attention because of strong results (albeit with some side effect issues) is Yervoy + Nivolumab. Here's a couple of those – http://clinicaltrials.gov/ct2/show/NCT01621490 and http://clinicaltrials.gov/ct2/show/NCT01783938. These are examples, there are a lot of clinical trials as you know.
Where are you being see now?
– Kyle
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- September 10, 2014 at 12:34 am
Mark,
Sorry this disease came back after leaving you alone for a few years.
As you say — getting help to navigate the maze. Were your docs from your first encounter with melanoma — and/or that you're seeing now — melanoma specialists? One thing almost everyone will agree on here, is to get seen by an oncologist specializing in melanoma. And once you do that, get a sccond opinion from another as well. The good ones can help juggle the pluses and minues of each treatment path with you. Try the Treatment Center Finder here on this site, for U.S. centers at least.
Combos — I saw one prominent melanoma oncologist speak (Dr. Jeffery Weber) a few months back at an MRF event. Tim from MRF was there too. Dr. Weber said if he had to choose for himself, he would go for a combo therapy. For example, he said numbers-wise, people tend to get longer response on the BRAF/MEK combo as compared to the BRAF drug on its own.
Clinical Trials — Like you say, there are also clinical trials. I'm in one that combines two immunotherapy drugs. Hearing Dr. Weber's talk on combo drugs definitely influenced my search for my current treatment. My trial doesn't have a placebo arm — I think that's almost always the case for early trial phases (mine is phase Ib). A drug combo that's getting a lot of attention because of strong results (albeit with some side effect issues) is Yervoy + Nivolumab. Here's a couple of those – http://clinicaltrials.gov/ct2/show/NCT01621490 and http://clinicaltrials.gov/ct2/show/NCT01783938. These are examples, there are a lot of clinical trials as you know.
Where are you being see now?
– Kyle
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- September 10, 2014 at 12:34 am
Mark,
Sorry this disease came back after leaving you alone for a few years.
As you say — getting help to navigate the maze. Were your docs from your first encounter with melanoma — and/or that you're seeing now — melanoma specialists? One thing almost everyone will agree on here, is to get seen by an oncologist specializing in melanoma. And once you do that, get a sccond opinion from another as well. The good ones can help juggle the pluses and minues of each treatment path with you. Try the Treatment Center Finder here on this site, for U.S. centers at least.
Combos — I saw one prominent melanoma oncologist speak (Dr. Jeffery Weber) a few months back at an MRF event. Tim from MRF was there too. Dr. Weber said if he had to choose for himself, he would go for a combo therapy. For example, he said numbers-wise, people tend to get longer response on the BRAF/MEK combo as compared to the BRAF drug on its own.
Clinical Trials — Like you say, there are also clinical trials. I'm in one that combines two immunotherapy drugs. Hearing Dr. Weber's talk on combo drugs definitely influenced my search for my current treatment. My trial doesn't have a placebo arm — I think that's almost always the case for early trial phases (mine is phase Ib). A drug combo that's getting a lot of attention because of strong results (albeit with some side effect issues) is Yervoy + Nivolumab. Here's a couple of those – http://clinicaltrials.gov/ct2/show/NCT01621490 and http://clinicaltrials.gov/ct2/show/NCT01783938. These are examples, there are a lot of clinical trials as you know.
Where are you being see now?
– Kyle
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- September 10, 2014 at 12:53 am
Hi Kyle,
Thanks for the reply. I am being treated by a melanoma specialist in Toronto, Canada.
Mark
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- September 10, 2014 at 12:53 am
Hi Kyle,
Thanks for the reply. I am being treated by a melanoma specialist in Toronto, Canada.
Mark
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- September 10, 2014 at 12:53 am
Hi Kyle,
Thanks for the reply. I am being treated by a melanoma specialist in Toronto, Canada.
Mark
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- September 10, 2014 at 5:17 pm
Hello Mark,
Like yourself, I have been using alternative approaches and while I have had no new mets, I do have growth of two of the existing ones.
Have you tried hyperthermia? I have not tried this yet but it appears to affect tumor size when directed at the tumor. As you only have the one tumor it might be worth a try either by itself or in conjunction with targeted radiation or other medical therapies.
Good luck,
Maggie
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- September 10, 2014 at 11:13 pm
Hi Maggie,
I did hyperthermia for a few months. I was only able to afford once a week so I don't think it was effective for that reason.
Mark
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- September 15, 2014 at 1:20 am
Did you do whole body hyperthermia or localised regional hyperthermia?
It might take up to 10 treatments of whole body hyperthermia to get good results although no one really knows because everybody and everyones disease is different.
It is a viable therapy. Did they give you vitamin C infusions with the hyperthermia because this is what is normally done in the German Cancer clinics as it makes the hyperthermia more effective.
I would try high dose of vitamin C if i was in your situation. You can use lipsomal and make it yourself that way it is not very expensive at all and it well digested and tolerated. High doses of up to 100grams could be very beneficial delaying the melanoma and providing quality of life.
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- September 15, 2014 at 1:20 am
Did you do whole body hyperthermia or localised regional hyperthermia?
It might take up to 10 treatments of whole body hyperthermia to get good results although no one really knows because everybody and everyones disease is different.
It is a viable therapy. Did they give you vitamin C infusions with the hyperthermia because this is what is normally done in the German Cancer clinics as it makes the hyperthermia more effective.
I would try high dose of vitamin C if i was in your situation. You can use lipsomal and make it yourself that way it is not very expensive at all and it well digested and tolerated. High doses of up to 100grams could be very beneficial delaying the melanoma and providing quality of life.
-
- September 15, 2014 at 1:20 am
Did you do whole body hyperthermia or localised regional hyperthermia?
It might take up to 10 treatments of whole body hyperthermia to get good results although no one really knows because everybody and everyones disease is different.
It is a viable therapy. Did they give you vitamin C infusions with the hyperthermia because this is what is normally done in the German Cancer clinics as it makes the hyperthermia more effective.
I would try high dose of vitamin C if i was in your situation. You can use lipsomal and make it yourself that way it is not very expensive at all and it well digested and tolerated. High doses of up to 100grams could be very beneficial delaying the melanoma and providing quality of life.
-
- September 10, 2014 at 11:13 pm
Hi Maggie,
I did hyperthermia for a few months. I was only able to afford once a week so I don't think it was effective for that reason.
Mark
-
- September 10, 2014 at 11:13 pm
Hi Maggie,
I did hyperthermia for a few months. I was only able to afford once a week so I don't think it was effective for that reason.
Mark
-
- September 10, 2014 at 5:17 pm
Hello Mark,
Like yourself, I have been using alternative approaches and while I have had no new mets, I do have growth of two of the existing ones.
Have you tried hyperthermia? I have not tried this yet but it appears to affect tumor size when directed at the tumor. As you only have the one tumor it might be worth a try either by itself or in conjunction with targeted radiation or other medical therapies.
Good luck,
Maggie
-
- September 10, 2014 at 5:17 pm
Hello Mark,
Like yourself, I have been using alternative approaches and while I have had no new mets, I do have growth of two of the existing ones.
Have you tried hyperthermia? I have not tried this yet but it appears to affect tumor size when directed at the tumor. As you only have the one tumor it might be worth a try either by itself or in conjunction with targeted radiation or other medical therapies.
Good luck,
Maggie
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