› Forums › Cutaneous Melanoma Community › Story similar to Alanas
- This topic has 15 replies, 4 voices, and was last updated 12 years, 3 months ago by
kylez.
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- May 27, 2013 at 11:33 am
I had "thing" on my upper calf that started as a small bump under my skin in late 2011. Mentioned it to my PCP in spring 2012 and she said that it looked like a cyst and gave me cards for a plastic surgeon and a general surgeon. Perfectly round, didn't hurt, didn't bother me at all. Didn't do anything about it and it slowly grew. Finally decided in Jan.
I had "thing" on my upper calf that started as a small bump under my skin in late 2011. Mentioned it to my PCP in spring 2012 and she said that it looked like a cyst and gave me cards for a plastic surgeon and a general surgeon. Perfectly round, didn't hurt, didn't bother me at all. Didn't do anything about it and it slowly grew. Finally decided in Jan. 2013 to go get this "thing" removed after my 14 year old son said it was ugly. Went to the general surgeon and he looked at it and said it could be a cyst or a collection of clogged varicose veins. Had it removed on March 7th and after surgery he still said it looked like varicose veins. Went back a week later and he said the pathaology report said it had melanoma cells in it and it was being sent to the Cleveland Clinic to have it looked at. Went back the next week and he handed me the report and the diagnosis said metastatic melanoma. This "thing" measeured 3 x 4 x 5 cm.
I got in within a week to see a plastic surgeon, dermatologist, and oncologist at the Cleveland Clinic all on the same day. Met with the surgeon first and he ordered the Pet/MRI scans and the plan was if the scans were clear then he would go back into my leg and do a radical surgery to make sure the margins were clear. Dermatologist looked me over and I had nothing suspicious. Oncologist explained the types of tx. available, but it all depended on what the scans said. Over the next two weeks I had the PET scan(which my insurance company denied initially, until the surgeon called them to explain why I needed it. Just fyi, don't take no for an answer with the insurance companies), and the MRI. MRi came back clear, but the PET scan showed a 1cm nodule in my right lung and a few subcutaneous nodules. Diagnosis Stage IV with unknown primary. Oncologist strongly suggested the Yervoy tx. but wanted me to take a few days to make sure I was 100% on board with it and he also suggested a second opinion. There would be no surgery on my leg.
I've had two infusions of the Yervoy and I go tomorrow to have a CAT scan, labs, and hopefully find out the BRAF results. My side effects of the Yervoy have been tiredness and some diarreha. My questions are:
Is it too soon to have the scan done after only 2 tx's of the Yervoy?
Does it normally take a couple of months for the BRAF results?
What else should the original biopsy be tested for?
I'm already looking ahead to clinical trials and my oncologist said the University of Pittsburgh has a good program. I'm going to bring up Johns Hopkins tomorrow too. What do you all think?
Has anyone gotten help with the Bristol Myers program for coapys for the Yervoy?
I've been stalking this board for 2 months and after reading Alana's post, I wanted to share my story. This whole experience has really thrown me for a loop. I'm a pretty healthy person and never had surgery other than a c-section. I still believe I am in some denial after nearly 3 months of this, but I firmly believe you have to be your own best advocate and educate yourself, I read these posts every day and get inspired by peoples stories and have learned so much. Thanks to all!
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- May 27, 2013 at 1:07 pm
First let me say I’m sorry you are going through all this but it sounds like you are doing the right things but preparing next steps and educating yourself. I can help w a couple of your questions. Usually scans are done 12 wks after the first infusion unless you present with symptoms that lead the Dr to believe it is imminent to check something (headaches, life threatening symptoms). I don’t see that in your case.
Yervoy can kick in anywhere from 1 dose to 12-24 wks that’s why they usually scan at 12. There’s a great webinar on MIF that goes through this if you haven’t seen it, I highly recommend it.Are seeing a Mel specialist? Have they treated you properly and cleared up the diarrhea?
Zelboraf is the only approved FDA treatment for a mutation, if you turn out negative and want to do a trial, they will test your tissue for other things or might require a fresh biopsy. My BRAF testing certainly didn’t take that long, but I go to Vanderbilt and they have their own genetics lab.
If you go back to the main MRF page and look for “Melanoma Breakthrough Consortium” this lists the biggies in term of research. Second opinions are great. Good luck!
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- May 27, 2013 at 1:07 pm
First let me say I’m sorry you are going through all this but it sounds like you are doing the right things but preparing next steps and educating yourself. I can help w a couple of your questions. Usually scans are done 12 wks after the first infusion unless you present with symptoms that lead the Dr to believe it is imminent to check something (headaches, life threatening symptoms). I don’t see that in your case.
Yervoy can kick in anywhere from 1 dose to 12-24 wks that’s why they usually scan at 12. There’s a great webinar on MIF that goes through this if you haven’t seen it, I highly recommend it.Are seeing a Mel specialist? Have they treated you properly and cleared up the diarrhea?
Zelboraf is the only approved FDA treatment for a mutation, if you turn out negative and want to do a trial, they will test your tissue for other things or might require a fresh biopsy. My BRAF testing certainly didn’t take that long, but I go to Vanderbilt and they have their own genetics lab.
If you go back to the main MRF page and look for “Melanoma Breakthrough Consortium” this lists the biggies in term of research. Second opinions are great. Good luck!
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- May 27, 2013 at 1:07 pm
First let me say I’m sorry you are going through all this but it sounds like you are doing the right things but preparing next steps and educating yourself. I can help w a couple of your questions. Usually scans are done 12 wks after the first infusion unless you present with symptoms that lead the Dr to believe it is imminent to check something (headaches, life threatening symptoms). I don’t see that in your case.
Yervoy can kick in anywhere from 1 dose to 12-24 wks that’s why they usually scan at 12. There’s a great webinar on MIF that goes through this if you haven’t seen it, I highly recommend it.Are seeing a Mel specialist? Have they treated you properly and cleared up the diarrhea?
Zelboraf is the only approved FDA treatment for a mutation, if you turn out negative and want to do a trial, they will test your tissue for other things or might require a fresh biopsy. My BRAF testing certainly didn’t take that long, but I go to Vanderbilt and they have their own genetics lab.
If you go back to the main MRF page and look for “Melanoma Breakthrough Consortium” this lists the biggies in term of research. Second opinions are great. Good luck!
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- May 27, 2013 at 8:40 pm
My oncologist is not a melanoma specialist. His main area is digestive cancers, but he sees a lot of melanoma. This has been a cause of concern for me especially after reading this board. He is very on top of the side effects of the Yervoy and I am seeing him every 2 weeks or so. The diarrhea has been mild and Imodium has helped. I don't think he has any intention of doing any biopsies on my lung or on any of the other subqs. Does this sound reasonable? I assume this is because they are not giving me any problem. I probably should not assume anything. I will see him tomorrow and will have a lot more questions. I think I really need to see a melanoma specialist.
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- May 27, 2013 at 8:40 pm
My oncologist is not a melanoma specialist. His main area is digestive cancers, but he sees a lot of melanoma. This has been a cause of concern for me especially after reading this board. He is very on top of the side effects of the Yervoy and I am seeing him every 2 weeks or so. The diarrhea has been mild and Imodium has helped. I don't think he has any intention of doing any biopsies on my lung or on any of the other subqs. Does this sound reasonable? I assume this is because they are not giving me any problem. I probably should not assume anything. I will see him tomorrow and will have a lot more questions. I think I really need to see a melanoma specialist.
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- May 27, 2013 at 8:40 pm
My oncologist is not a melanoma specialist. His main area is digestive cancers, but he sees a lot of melanoma. This has been a cause of concern for me especially after reading this board. He is very on top of the side effects of the Yervoy and I am seeing him every 2 weeks or so. The diarrhea has been mild and Imodium has helped. I don't think he has any intention of doing any biopsies on my lung or on any of the other subqs. Does this sound reasonable? I assume this is because they are not giving me any problem. I probably should not assume anything. I will see him tomorrow and will have a lot more questions. I think I really need to see a melanoma specialist.
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- May 27, 2013 at 11:57 pm
I definitely wouldn’t assume anything. I ask about everything.Diarrhea on Yervoy is worrisome, esp if you’ve got 2 doses left. I didn’t get colitis, but many on here have. My Dr told me up front – 2 days of diarrhea = colonoscopy. It can be a big deal if not treated properly. I had a friend w an inexperienced dr, he never recovered fom colitis and it excluded him from any other treatment.
More importantly, it sounds as if you’re unsure of your dr. Find a specialist, someone you’re confident in placing your life in his/her hands. You’re worth it.
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- May 27, 2013 at 11:57 pm
I definitely wouldn’t assume anything. I ask about everything.Diarrhea on Yervoy is worrisome, esp if you’ve got 2 doses left. I didn’t get colitis, but many on here have. My Dr told me up front – 2 days of diarrhea = colonoscopy. It can be a big deal if not treated properly. I had a friend w an inexperienced dr, he never recovered fom colitis and it excluded him from any other treatment.
More importantly, it sounds as if you’re unsure of your dr. Find a specialist, someone you’re confident in placing your life in his/her hands. You’re worth it.
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- May 27, 2013 at 11:57 pm
I definitely wouldn’t assume anything. I ask about everything.Diarrhea on Yervoy is worrisome, esp if you’ve got 2 doses left. I didn’t get colitis, but many on here have. My Dr told me up front – 2 days of diarrhea = colonoscopy. It can be a big deal if not treated properly. I had a friend w an inexperienced dr, he never recovered fom colitis and it excluded him from any other treatment.
More importantly, it sounds as if you’re unsure of your dr. Find a specialist, someone you’re confident in placing your life in his/her hands. You’re worth it.
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- May 28, 2013 at 12:39 am
Hi Becky. I’ve never been to CC but I saw from their web site they do have a melanoma clinic. Looks like several dermatologists and radiation oncologists, and one main oncologist, in part. Don’t know how close or far you would be from that, seems like CC has a lot of locations.Where I was seen (not CC) it was the oncologist who managed my Yervoy treatment. Like Amy says, colon issues with Yervoy need careful attention as evidenced by more than a few people here whose diarrhea grew into serious colitis sometimes with long hospital stays. That could be one thing to both ask him about, and maybe also assess him on, tomorrow.
Good luck, Kyle -
- May 28, 2013 at 12:39 am
Hi Becky. I’ve never been to CC but I saw from their web site they do have a melanoma clinic. Looks like several dermatologists and radiation oncologists, and one main oncologist, in part. Don’t know how close or far you would be from that, seems like CC has a lot of locations.Where I was seen (not CC) it was the oncologist who managed my Yervoy treatment. Like Amy says, colon issues with Yervoy need careful attention as evidenced by more than a few people here whose diarrhea grew into serious colitis sometimes with long hospital stays. That could be one thing to both ask him about, and maybe also assess him on, tomorrow.
Good luck, Kyle -
- May 28, 2013 at 12:39 am
Hi Becky. I’ve never been to CC but I saw from their web site they do have a melanoma clinic. Looks like several dermatologists and radiation oncologists, and one main oncologist, in part. Don’t know how close or far you would be from that, seems like CC has a lot of locations.Where I was seen (not CC) it was the oncologist who managed my Yervoy treatment. Like Amy says, colon issues with Yervoy need careful attention as evidenced by more than a few people here whose diarrhea grew into serious colitis sometimes with long hospital stays. That could be one thing to both ask him about, and maybe also assess him on, tomorrow.
Good luck, Kyle
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- May 27, 2013 at 5:46 pm
I'm big on Hopkins. Another place to consider for your second opinion (or even third!) is to see Lynn Schuchter at U. Penn. She was our third opinion. She didn't have a trial to offer us but helped by explaining things even better than Dr. Sharfman did (he was our first Hopkins doctor) and helped us make sure we had considered everything before Robert entered the GVAX trial at Hopkins.
It sounds like you have metastatic disease (assuming those nodules were biopsied and verified melanoma cells in them) but maybe not unknown primary. My husband's melanoma was written up at first as unknown primary because it appeared very much like yours – a bump that grew and seemed to all like a cyst when it was removed – but our docs all agreed that it was pobably the primary site.
Now, one more thing – no need to think of yourself as a stalker! Sorry to have to welcome you here, but feel free to ask more questions as they arise. We'll help if we can.
~Hazel
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- May 27, 2013 at 5:46 pm
I'm big on Hopkins. Another place to consider for your second opinion (or even third!) is to see Lynn Schuchter at U. Penn. She was our third opinion. She didn't have a trial to offer us but helped by explaining things even better than Dr. Sharfman did (he was our first Hopkins doctor) and helped us make sure we had considered everything before Robert entered the GVAX trial at Hopkins.
It sounds like you have metastatic disease (assuming those nodules were biopsied and verified melanoma cells in them) but maybe not unknown primary. My husband's melanoma was written up at first as unknown primary because it appeared very much like yours – a bump that grew and seemed to all like a cyst when it was removed – but our docs all agreed that it was pobably the primary site.
Now, one more thing – no need to think of yourself as a stalker! Sorry to have to welcome you here, but feel free to ask more questions as they arise. We'll help if we can.
~Hazel
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- May 27, 2013 at 5:46 pm
I'm big on Hopkins. Another place to consider for your second opinion (or even third!) is to see Lynn Schuchter at U. Penn. She was our third opinion. She didn't have a trial to offer us but helped by explaining things even better than Dr. Sharfman did (he was our first Hopkins doctor) and helped us make sure we had considered everything before Robert entered the GVAX trial at Hopkins.
It sounds like you have metastatic disease (assuming those nodules were biopsied and verified melanoma cells in them) but maybe not unknown primary. My husband's melanoma was written up at first as unknown primary because it appeared very much like yours – a bump that grew and seemed to all like a cyst when it was removed – but our docs all agreed that it was pobably the primary site.
Now, one more thing – no need to think of yourself as a stalker! Sorry to have to welcome you here, but feel free to ask more questions as they arise. We'll help if we can.
~Hazel
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Tagged: cutaneous melanoma
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