› Forums › General Melanoma Community › My father has melanoma in both legs- please help
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momreader.
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- May 17, 2012 at 4:03 am
I am hoping somebody can help or advise me. My father was originally diagnosed with melanoma in his toe about 2 1/2 years ago. His toe was amputated, and then everything was all clear for 2 years, and we were so happy and relieved. A few months ago, they found something in his small intestine and one of his feet. He went into a trial for ipilmumab (yervoy) and MDX 1106 combined. We were very optimistic as so many people seemed to be helped by yervoy, and it seemed my father's prognosis was good b/c they caught it early and the tumors were small.
I am hoping somebody can help or advise me. My father was originally diagnosed with melanoma in his toe about 2 1/2 years ago. His toe was amputated, and then everything was all clear for 2 years, and we were so happy and relieved. A few months ago, they found something in his small intestine and one of his feet. He went into a trial for ipilmumab (yervoy) and MDX 1106 combined. We were very optimistic as so many people seemed to be helped by yervoy, and it seemed my father's prognosis was good b/c they caught it early and the tumors were small.
Well, everything kind of went haywire. My father had many problems after starting this trial – skin problems, his thyroid basically burned out (now being treated by endocrinologist), he had liver issues which resolved, and unfortunately he now has some kidney issues (creatinine levels too high). My father did not complete the whole first course of trmt (he ended up having the first infusion, then had to miss the 2nd due to bad side effects, then he had the 3rd trmt, and missed the 4th (there are 4 treatments – one every 3 weeks for the first round). In middle of all this, the tumor in his small intestine got much worse, and he needed to have surgery to remove it, which happened about 3 1/2 weeks ago. Thank G-d, that went well, and we were left with the tumor in his foot. The doctors felt that the immunotherapy wasn't tolerated well by him, and even though they would have preferred to treat the melanoma systemically, they said we should meet with the surgeon to discuss removing the melanoma that remained in his foot. The surgeon wanted a Pet scan first, which he had, and we met with the surgeon today and he said that unfortunately the melanoma is no longer in one spot in one foot- it is in both feet, and in 4 spots, 2 in each foot. He didn't feel surgery was a good option.
So now we need to figure out what to do. We still need to get the creatinine levels under control ( my father is having a liver biopsy on Monday), and this could be a problem in having future treatment, but hopefully that will figure the kidney thing out – it is a rare side effect to the Yervoy (or MDX1106 – who knows what caused it?) My father could have chemotherapy, but from what i read, that is not considered to be so great with melanoma. They don't think radiation is a great option with so many spots. I am trying to research different treatments out there. My father does not have the BRAF mutation. They are testing him for the KiT mutation. We are hoping we can manage this disease so my father can live a long life. He is very beloved by our entire community and is the heart of our family. My children are babies and I am scared, I want them to grow up with their wonderful grandfather. Can anyone please help and give me some ideas of what to be looking into? I have spent hours researching melanoma treatment and am a little unsure what our options are now. We are trying to stay positive – it is so important – but would love some advice about now. Any help would be so greatly appreciated.
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- May 17, 2012 at 5:25 am
I am sorry to hear about your father, and the challenges he is facing.
You don't mention where your father is being treated, but since this study is only open a couple of places I can infer that he is being seen at a good melanoma center. That is a critical first step. I doubt I can offer any new suggestions they haven't already considered, unfortunately.
I am curious if his melanoma is acral melanoma. This is a rare form of the cancer, but shows up on the soles of the feet, palms of the hands, in the nail bed, etc. This may be why they are testing for c-kit mutation.
Some thoughts. Simply because he had a poor reaction to the combination of ipi and the PD-1 doesn't mean he wouldn't tolerate ipi (Yervoy) by itself. This combination study is just getting started and no-one really knows how people will react.
Even though he does not have the BRAF mutation doesn't mean he can't try targeted therapy. Trials of MEK inibitors and PI3 Kinase inhibitors are currently enrolling patients.
It might mean travelling to another location, but still the options do exist.
I think you need to have a long, serious discussion with your treatment team about not just the next step but the next couple of steps. Andy you may want to get a second opinion. Even very top-notch doctors can have different opinions.
Tim–MRF
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- May 20, 2012 at 4:22 am
My father does not have acral melanoma. We are in a good treatment center with top doctors in New York. I'm not sure he is able to have the Yervoy on its own b/c of his lingering kidney problems. (Not to mention that my parents are scared of it b/c of all the problems so far, even though it may be from MDX 1106 or the combination of the 2). Any trial that contains a medication plus Yervoy he probably wouldn't be eligible for either. I thought the trials you mention are not specifically for melanoma, but I can look into it. We are meeting with his doctor, there are many people involved and we never have the opportunity to meet all together which bothers me. We meet separately with the surgeon, kidney doctor, etc. It appears thought that most options are turning to chemo – but I am hoping some other ideas will turn up as chemo doesn't seem so effective for melanoma from everything I have read.
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- May 20, 2012 at 4:22 am
My father does not have acral melanoma. We are in a good treatment center with top doctors in New York. I'm not sure he is able to have the Yervoy on its own b/c of his lingering kidney problems. (Not to mention that my parents are scared of it b/c of all the problems so far, even though it may be from MDX 1106 or the combination of the 2). Any trial that contains a medication plus Yervoy he probably wouldn't be eligible for either. I thought the trials you mention are not specifically for melanoma, but I can look into it. We are meeting with his doctor, there are many people involved and we never have the opportunity to meet all together which bothers me. We meet separately with the surgeon, kidney doctor, etc. It appears thought that most options are turning to chemo – but I am hoping some other ideas will turn up as chemo doesn't seem so effective for melanoma from everything I have read.
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- May 20, 2012 at 4:22 am
My father does not have acral melanoma. We are in a good treatment center with top doctors in New York. I'm not sure he is able to have the Yervoy on its own b/c of his lingering kidney problems. (Not to mention that my parents are scared of it b/c of all the problems so far, even though it may be from MDX 1106 or the combination of the 2). Any trial that contains a medication plus Yervoy he probably wouldn't be eligible for either. I thought the trials you mention are not specifically for melanoma, but I can look into it. We are meeting with his doctor, there are many people involved and we never have the opportunity to meet all together which bothers me. We meet separately with the surgeon, kidney doctor, etc. It appears thought that most options are turning to chemo – but I am hoping some other ideas will turn up as chemo doesn't seem so effective for melanoma from everything I have read.
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- May 17, 2012 at 5:25 am
I am sorry to hear about your father, and the challenges he is facing.
You don't mention where your father is being treated, but since this study is only open a couple of places I can infer that he is being seen at a good melanoma center. That is a critical first step. I doubt I can offer any new suggestions they haven't already considered, unfortunately.
I am curious if his melanoma is acral melanoma. This is a rare form of the cancer, but shows up on the soles of the feet, palms of the hands, in the nail bed, etc. This may be why they are testing for c-kit mutation.
Some thoughts. Simply because he had a poor reaction to the combination of ipi and the PD-1 doesn't mean he wouldn't tolerate ipi (Yervoy) by itself. This combination study is just getting started and no-one really knows how people will react.
Even though he does not have the BRAF mutation doesn't mean he can't try targeted therapy. Trials of MEK inibitors and PI3 Kinase inhibitors are currently enrolling patients.
It might mean travelling to another location, but still the options do exist.
I think you need to have a long, serious discussion with your treatment team about not just the next step but the next couple of steps. Andy you may want to get a second opinion. Even very top-notch doctors can have different opinions.
Tim–MRF
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- May 17, 2012 at 5:25 am
I am sorry to hear about your father, and the challenges he is facing.
You don't mention where your father is being treated, but since this study is only open a couple of places I can infer that he is being seen at a good melanoma center. That is a critical first step. I doubt I can offer any new suggestions they haven't already considered, unfortunately.
I am curious if his melanoma is acral melanoma. This is a rare form of the cancer, but shows up on the soles of the feet, palms of the hands, in the nail bed, etc. This may be why they are testing for c-kit mutation.
Some thoughts. Simply because he had a poor reaction to the combination of ipi and the PD-1 doesn't mean he wouldn't tolerate ipi (Yervoy) by itself. This combination study is just getting started and no-one really knows how people will react.
Even though he does not have the BRAF mutation doesn't mean he can't try targeted therapy. Trials of MEK inibitors and PI3 Kinase inhibitors are currently enrolling patients.
It might mean travelling to another location, but still the options do exist.
I think you need to have a long, serious discussion with your treatment team about not just the next step but the next couple of steps. Andy you may want to get a second opinion. Even very top-notch doctors can have different opinions.
Tim–MRF
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