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- This topic has 21 replies, 5 voices, and was last updated 8 years, 8 months ago by
Hikeratheart.
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- August 8, 2015 at 3:36 pm
Hi everyone,
I have been reading the forum for a few months, it has helped me tremendously through my diagnosis.
I need help deciding on interferon.
Here's my story:
On May 21st, 2015, I had biopsies for two spots, one on my back, which was thin, and another more concerning on my right arm. I was diagnosed with melanoma at the end of May. I have 2 primaries. Stage 2b.
Surgery on July 1st – SNLN biopsy, negative for majestic melanoma. ( yeah, happy dance)
Wide re-excision of my right arm, biopsy: melanoma in situ, margins widely free of involvement, negative for invasive mel. Breslows 4.5 , Clarks level 5. The depth concerned me!
Wide re-excisional biopsy of skin on my back, .4 mm. Clarks level 3
negative for residual, invasive and in situ melanoma.
My oncologist, Dr. Robert Taylor in Milwaukee (Aurora health) has advised me that since I have 2 primaries, I should (could) do interferon for 4 weeks (5 days) and then 48 weeks /3 days. On Monday, 8/10, I am getting a second opinion from another oncologist.
Please advise me me on this. If I understand correctly, I am in the gray area? Is interferon all that is available or offered at this stage, so that's why their advising it? This is a big decision for me. I am a healthy 60 yr old woman with 2 new grandkids. I really want to do everything possible for my good health, but have learned that it's a controversial treatment.
Thank you for any help you can offer.
Kathy McC.
- Replies
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- August 8, 2015 at 3:47 pm
Make sure the oncologist is a melanoma specialist! Two primaries has absolutely nothing to do with taking interferon or anything else. Your Clarks Level III/ 0.4mm is basically taken care of with surgery and would not factor in to any decision to have systemic treatment. It would be considered low risk for spread. However, the one on the arm is much more concerning. At stage 2b, there aren't many options. Interferon is offered for some high risk stage II individuals, but Interferon is controversial at best. Studies show it doesn't increase overall survival, only it may increase disease free survival for about the length of time taken. I'm including a link that gives you a good synopsis of whether this is the right treatment for you.
http://theoncologist.alphamedpress.org/content/10/9/739.full
Other than Interferon, there aren't many options for stage II. New treatments for stage IV are being tested for adjuvant therapies for stage III folks in clinical trials, but I'm not sure they are open to stage II at this point. Nothing is approved besides Interferon with it's lousy stats. However, you could go to clinicaltrials.gov and see if there is anything open for stage IIb melanoma if you were willing to participate in a clinical trial.
Janner
3 primaries, stage IB
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- August 8, 2015 at 3:47 pm
Make sure the oncologist is a melanoma specialist! Two primaries has absolutely nothing to do with taking interferon or anything else. Your Clarks Level III/ 0.4mm is basically taken care of with surgery and would not factor in to any decision to have systemic treatment. It would be considered low risk for spread. However, the one on the arm is much more concerning. At stage 2b, there aren't many options. Interferon is offered for some high risk stage II individuals, but Interferon is controversial at best. Studies show it doesn't increase overall survival, only it may increase disease free survival for about the length of time taken. I'm including a link that gives you a good synopsis of whether this is the right treatment for you.
http://theoncologist.alphamedpress.org/content/10/9/739.full
Other than Interferon, there aren't many options for stage II. New treatments for stage IV are being tested for adjuvant therapies for stage III folks in clinical trials, but I'm not sure they are open to stage II at this point. Nothing is approved besides Interferon with it's lousy stats. However, you could go to clinicaltrials.gov and see if there is anything open for stage IIb melanoma if you were willing to participate in a clinical trial.
Janner
3 primaries, stage IB
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- August 8, 2015 at 3:47 pm
Make sure the oncologist is a melanoma specialist! Two primaries has absolutely nothing to do with taking interferon or anything else. Your Clarks Level III/ 0.4mm is basically taken care of with surgery and would not factor in to any decision to have systemic treatment. It would be considered low risk for spread. However, the one on the arm is much more concerning. At stage 2b, there aren't many options. Interferon is offered for some high risk stage II individuals, but Interferon is controversial at best. Studies show it doesn't increase overall survival, only it may increase disease free survival for about the length of time taken. I'm including a link that gives you a good synopsis of whether this is the right treatment for you.
http://theoncologist.alphamedpress.org/content/10/9/739.full
Other than Interferon, there aren't many options for stage II. New treatments for stage IV are being tested for adjuvant therapies for stage III folks in clinical trials, but I'm not sure they are open to stage II at this point. Nothing is approved besides Interferon with it's lousy stats. However, you could go to clinicaltrials.gov and see if there is anything open for stage IIb melanoma if you were willing to participate in a clinical trial.
Janner
3 primaries, stage IB
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- August 8, 2015 at 7:29 pm
Sorry you have to be here, but *yeah* for no lymph node involvement.
Just curious about your staging. Am I reading it correctly … that the melanoma on your arm was considered "in situ" but staged at 2b? I didn't think that was possible.
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- August 9, 2015 at 6:19 pm
Thank you. I'm on the learning curve as far as reading the pathology reports. The report says:
"Melanoma in situ extends to both radial edges and invasive melanoma comes within a few 10th of a mm from the deep inked edge."
I would appreciate any resources in Milwaukee. Does anyone know a melanoma specialist? I can travel to Chicago if needed. I'm a little more than an hour from Madison.
I asked my surgeon if I needed to watch around the incision site for reoccurrence. I had 17 stiches in my right arm to remove the toumor above my elbow. He responded, " You don't ever have to worry about it coming back around there."
the link to interferon treatment was most helpful. I'm leaning, and always have been, to not doing the interferon. Now I question the doctor, saying the main reason he's presenting interferon treatment it is because I have 2 primaries! That scares me.
I appreciate cite all the valuable info this site has offered.
Kathy McC
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- August 9, 2015 at 6:19 pm
Thank you. I'm on the learning curve as far as reading the pathology reports. The report says:
"Melanoma in situ extends to both radial edges and invasive melanoma comes within a few 10th of a mm from the deep inked edge."
I would appreciate any resources in Milwaukee. Does anyone know a melanoma specialist? I can travel to Chicago if needed. I'm a little more than an hour from Madison.
I asked my surgeon if I needed to watch around the incision site for reoccurrence. I had 17 stiches in my right arm to remove the toumor above my elbow. He responded, " You don't ever have to worry about it coming back around there."
the link to interferon treatment was most helpful. I'm leaning, and always have been, to not doing the interferon. Now I question the doctor, saying the main reason he's presenting interferon treatment it is because I have 2 primaries! That scares me.
I appreciate cite all the valuable info this site has offered.
Kathy McC
-
- August 9, 2015 at 6:19 pm
Thank you. I'm on the learning curve as far as reading the pathology reports. The report says:
"Melanoma in situ extends to both radial edges and invasive melanoma comes within a few 10th of a mm from the deep inked edge."
I would appreciate any resources in Milwaukee. Does anyone know a melanoma specialist? I can travel to Chicago if needed. I'm a little more than an hour from Madison.
I asked my surgeon if I needed to watch around the incision site for reoccurrence. I had 17 stiches in my right arm to remove the toumor above my elbow. He responded, " You don't ever have to worry about it coming back around there."
the link to interferon treatment was most helpful. I'm leaning, and always have been, to not doing the interferon. Now I question the doctor, saying the main reason he's presenting interferon treatment it is because I have 2 primaries! That scares me.
I appreciate cite all the valuable info this site has offered.
Kathy McC
-
- August 8, 2015 at 7:29 pm
Sorry you have to be here, but *yeah* for no lymph node involvement.
Just curious about your staging. Am I reading it correctly … that the melanoma on your arm was considered "in situ" but staged at 2b? I didn't think that was possible.
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- August 8, 2015 at 7:29 pm
Sorry you have to be here, but *yeah* for no lymph node involvement.
Just curious about your staging. Am I reading it correctly … that the melanoma on your arm was considered "in situ" but staged at 2b? I didn't think that was possible.
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- August 9, 2015 at 10:14 pm
Sorry you have to be here, I started about the same time but had to dig in fast!! My teenage son had a small blue nevus on the side of his head removed 6/14. Came back benign. Several weeks later a lump showed up behind his ear. 3 dr later I finally got a biopsy, then removal of lump. 9/12/14 a dr came straight out of lymph removal to tell me he was sure it was melanoma. He parted my sons hair where the original mole was removed. I dropped to the ground. It just took my breath away. A large new dark mole and bluish discoloration all around the scar. Yes, it came back where the site of origin was!
he had a big surgery etc. He did biochemo and interferon. The biochemo was horrible and did nothing that we could see. The interferon was like 9 days then 2 weeks off etc for 3 times. It made him quite sick and again we saw no results. I read last week that some places are allowing drugs like Keyruda as a first line treatment!! Oh how I wish this would have been the case for my boy!!
Keep talking and learning. You will know when you have found your answers. It's a hard road but you can do it!
sending love,
kerri-mom of jake
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- August 9, 2015 at 10:14 pm
Sorry you have to be here, I started about the same time but had to dig in fast!! My teenage son had a small blue nevus on the side of his head removed 6/14. Came back benign. Several weeks later a lump showed up behind his ear. 3 dr later I finally got a biopsy, then removal of lump. 9/12/14 a dr came straight out of lymph removal to tell me he was sure it was melanoma. He parted my sons hair where the original mole was removed. I dropped to the ground. It just took my breath away. A large new dark mole and bluish discoloration all around the scar. Yes, it came back where the site of origin was!
he had a big surgery etc. He did biochemo and interferon. The biochemo was horrible and did nothing that we could see. The interferon was like 9 days then 2 weeks off etc for 3 times. It made him quite sick and again we saw no results. I read last week that some places are allowing drugs like Keyruda as a first line treatment!! Oh how I wish this would have been the case for my boy!!
Keep talking and learning. You will know when you have found your answers. It's a hard road but you can do it!
sending love,
kerri-mom of jake
-
- August 9, 2015 at 10:14 pm
Sorry you have to be here, I started about the same time but had to dig in fast!! My teenage son had a small blue nevus on the side of his head removed 6/14. Came back benign. Several weeks later a lump showed up behind his ear. 3 dr later I finally got a biopsy, then removal of lump. 9/12/14 a dr came straight out of lymph removal to tell me he was sure it was melanoma. He parted my sons hair where the original mole was removed. I dropped to the ground. It just took my breath away. A large new dark mole and bluish discoloration all around the scar. Yes, it came back where the site of origin was!
he had a big surgery etc. He did biochemo and interferon. The biochemo was horrible and did nothing that we could see. The interferon was like 9 days then 2 weeks off etc for 3 times. It made him quite sick and again we saw no results. I read last week that some places are allowing drugs like Keyruda as a first line treatment!! Oh how I wish this would have been the case for my boy!!
Keep talking and learning. You will know when you have found your answers. It's a hard road but you can do it!
sending love,
kerri-mom of jake
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- August 11, 2015 at 1:32 am
I tried interferon in the summer of 2013, after a wide area excision & sentinel node biopsy, followed by an axillary lymph node dissection. I was stage IIIa.
I saw Dr. Sharfman at Johns Hopkins, who laid out all of the details for me, including the fact that interferon doesn't extend life expectancy, it merely extends recurrence free survival. He told me in my case that doing interferon, or not doing it were both perfectly acceptable choices for me. I elected to try it, and he recommended Sylatron rather than high dose interferon.
I was given the first dose at my local cancer center. It was the only dose I took. I felt so sick that I didn't get out of bed for almost two days, and I felt completely wiped out for about three weeks. It was probably close to two months before I felt back to normal again. I told my oncologist that I wanted no more part of it, and he said that I was only the second patient he had ever had to even agree to try it.
I had a recurrence last summer, which brought more surgery, followed by Yervoy, which worked partially, and now Keytruda, which I seem to be getting a good response to after just one dose. I get my second dose this Thursday.
So that's my experience with interferon. I think there may be some clinical trials out there using Yervoy as adjuvant therapy. You might consider looking into those, because I can tell you, having experienced both, I'll take Yervoy over interferon any day of the week!
Bill
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- August 11, 2015 at 1:32 am
I tried interferon in the summer of 2013, after a wide area excision & sentinel node biopsy, followed by an axillary lymph node dissection. I was stage IIIa.
I saw Dr. Sharfman at Johns Hopkins, who laid out all of the details for me, including the fact that interferon doesn't extend life expectancy, it merely extends recurrence free survival. He told me in my case that doing interferon, or not doing it were both perfectly acceptable choices for me. I elected to try it, and he recommended Sylatron rather than high dose interferon.
I was given the first dose at my local cancer center. It was the only dose I took. I felt so sick that I didn't get out of bed for almost two days, and I felt completely wiped out for about three weeks. It was probably close to two months before I felt back to normal again. I told my oncologist that I wanted no more part of it, and he said that I was only the second patient he had ever had to even agree to try it.
I had a recurrence last summer, which brought more surgery, followed by Yervoy, which worked partially, and now Keytruda, which I seem to be getting a good response to after just one dose. I get my second dose this Thursday.
So that's my experience with interferon. I think there may be some clinical trials out there using Yervoy as adjuvant therapy. You might consider looking into those, because I can tell you, having experienced both, I'll take Yervoy over interferon any day of the week!
Bill
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- August 15, 2015 at 5:04 pm
Thanks for your story Bill, and others on this forum.
I am not going to do interferon. I feel comfortable with my decision. It just seems it's the only option for this stage.
I am looking into a clinical trial for stage 2b at Mayo clinic in MN.
It appears I meet the basic criteria, and will submit required paperwork. However, the trial coodinator didn't know much about the cost to participants, etc. She did say, there is no reimbursement for travel, or dr visits, but the drug would be covered. I think this will end up being cost prohibitive for me, but I plan to look into it anyway. I feel better with the possibility of doing something to prevent reoccurrence.
My second opinion DR. Suggested genetic counseling. I'm the first to have melanoma I my family, but there are other cancers in the family. Has anyone expereinced genetic counseling? Was it helpful.?
Kathy McC
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- August 15, 2015 at 5:04 pm
Thanks for your story Bill, and others on this forum.
I am not going to do interferon. I feel comfortable with my decision. It just seems it's the only option for this stage.
I am looking into a clinical trial for stage 2b at Mayo clinic in MN.
It appears I meet the basic criteria, and will submit required paperwork. However, the trial coodinator didn't know much about the cost to participants, etc. She did say, there is no reimbursement for travel, or dr visits, but the drug would be covered. I think this will end up being cost prohibitive for me, but I plan to look into it anyway. I feel better with the possibility of doing something to prevent reoccurrence.
My second opinion DR. Suggested genetic counseling. I'm the first to have melanoma I my family, but there are other cancers in the family. Has anyone expereinced genetic counseling? Was it helpful.?
Kathy McC
-
- August 15, 2015 at 5:04 pm
Thanks for your story Bill, and others on this forum.
I am not going to do interferon. I feel comfortable with my decision. It just seems it's the only option for this stage.
I am looking into a clinical trial for stage 2b at Mayo clinic in MN.
It appears I meet the basic criteria, and will submit required paperwork. However, the trial coodinator didn't know much about the cost to participants, etc. She did say, there is no reimbursement for travel, or dr visits, but the drug would be covered. I think this will end up being cost prohibitive for me, but I plan to look into it anyway. I feel better with the possibility of doing something to prevent reoccurrence.
My second opinion DR. Suggested genetic counseling. I'm the first to have melanoma I my family, but there are other cancers in the family. Has anyone expereinced genetic counseling? Was it helpful.?
Kathy McC
-
- August 11, 2015 at 1:32 am
I tried interferon in the summer of 2013, after a wide area excision & sentinel node biopsy, followed by an axillary lymph node dissection. I was stage IIIa.
I saw Dr. Sharfman at Johns Hopkins, who laid out all of the details for me, including the fact that interferon doesn't extend life expectancy, it merely extends recurrence free survival. He told me in my case that doing interferon, or not doing it were both perfectly acceptable choices for me. I elected to try it, and he recommended Sylatron rather than high dose interferon.
I was given the first dose at my local cancer center. It was the only dose I took. I felt so sick that I didn't get out of bed for almost two days, and I felt completely wiped out for about three weeks. It was probably close to two months before I felt back to normal again. I told my oncologist that I wanted no more part of it, and he said that I was only the second patient he had ever had to even agree to try it.
I had a recurrence last summer, which brought more surgery, followed by Yervoy, which worked partially, and now Keytruda, which I seem to be getting a good response to after just one dose. I get my second dose this Thursday.
So that's my experience with interferon. I think there may be some clinical trials out there using Yervoy as adjuvant therapy. You might consider looking into those, because I can tell you, having experienced both, I'll take Yervoy over interferon any day of the week!
Bill
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