› Forums › General Melanoma Community › Advice please
- This topic has 18 replies, 3 voices, and was last updated 8 years, 4 months ago by
jennunicorn.
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- January 31, 2017 at 8:24 pm
So long story fiance had a mole on aem that grew large and tumored and with in a few months of that tumor growing his lymph node under armpit grew very large. I then sent him to my doctor who then sent him to a surgeon. The sugeon biopsied the growths and they came back positive for melanoma. Today we saw an oncologist who said sense it spread it was at best stage 3 sense it spread to the lymph node. The next few days my fiance will habe a pet scan and mri done to see how far it has spread. He semi explained immunotherapy. And next tuesday we follow up fpr results. I plan on going to clevland clinin for treatments and care. But i was curious about treatment like what has been most successful and side affects and how it all works.
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- January 31, 2017 at 10:48 pm
If the PET and MRI scans are clear, then your fiance will remain stage 3. Stage 3 has one good FDA approved option for treatment which is Yervoy (Ipi). There are clinical trials testing the other immunotherapy drugs Opdivo (Nivo) and Keytruda (Pembro) for stage 3 adjuvant. I believe cleavland clinic has a melanoma program, make sure you are going to a melanoma specialist… an oncologist who only sees melanoma patients. The choices your fiance will be given at stage 3 are: watch and wait; involving close observation through regular scans and doctor visits. Yervoy; the approved immunotherapy drug. Or a clinical trial.
I did Yervoy when I was originally diagnosed. It doesn't have the highest percentage rate of effectiveness, but it has worked for many people. Side effects are similar amongst all of the immunotherapy drugs, but are NOT a given. Not everyone experiences side effects and some get them worse than others, it is very individual and there's no predicting. One reason why having a melanoma oncologist is very important, as they understand what side effects can happen and how to properly treat them. Yervoy tends to give patients more side effects than some of the other drugs.
Hope that helped a little. Sending good vibes for clear scans,
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- January 31, 2017 at 10:48 pm
If the PET and MRI scans are clear, then your fiance will remain stage 3. Stage 3 has one good FDA approved option for treatment which is Yervoy (Ipi). There are clinical trials testing the other immunotherapy drugs Opdivo (Nivo) and Keytruda (Pembro) for stage 3 adjuvant. I believe cleavland clinic has a melanoma program, make sure you are going to a melanoma specialist… an oncologist who only sees melanoma patients. The choices your fiance will be given at stage 3 are: watch and wait; involving close observation through regular scans and doctor visits. Yervoy; the approved immunotherapy drug. Or a clinical trial.
I did Yervoy when I was originally diagnosed. It doesn't have the highest percentage rate of effectiveness, but it has worked for many people. Side effects are similar amongst all of the immunotherapy drugs, but are NOT a given. Not everyone experiences side effects and some get them worse than others, it is very individual and there's no predicting. One reason why having a melanoma oncologist is very important, as they understand what side effects can happen and how to properly treat them. Yervoy tends to give patients more side effects than some of the other drugs.
Hope that helped a little. Sending good vibes for clear scans,
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- January 31, 2017 at 10:48 pm
If the PET and MRI scans are clear, then your fiance will remain stage 3. Stage 3 has one good FDA approved option for treatment which is Yervoy (Ipi). There are clinical trials testing the other immunotherapy drugs Opdivo (Nivo) and Keytruda (Pembro) for stage 3 adjuvant. I believe cleavland clinic has a melanoma program, make sure you are going to a melanoma specialist… an oncologist who only sees melanoma patients. The choices your fiance will be given at stage 3 are: watch and wait; involving close observation through regular scans and doctor visits. Yervoy; the approved immunotherapy drug. Or a clinical trial.
I did Yervoy when I was originally diagnosed. It doesn't have the highest percentage rate of effectiveness, but it has worked for many people. Side effects are similar amongst all of the immunotherapy drugs, but are NOT a given. Not everyone experiences side effects and some get them worse than others, it is very individual and there's no predicting. One reason why having a melanoma oncologist is very important, as they understand what side effects can happen and how to properly treat them. Yervoy tends to give patients more side effects than some of the other drugs.
Hope that helped a little. Sending good vibes for clear scans,
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- February 1, 2017 at 3:21 pm
Hello, There are also melanoma oncologist and dermatologist at University Hospital in Cleveland and if there are trials sometimes Cleveland Clinic may be doing or University may have it. They will refer you to the other hospital as they try to do different trials so they cover more trials. Either way they both work together. At University our surgeon talked with the other surgeons in a group meeting to discuss my husbands case and they all chimed in as to what they thought would work.
Hope this helps. My husband started his melanoma journey in 2008 and became NED in 2012 and has remained that way. If you would like more info on him check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4.5 years.
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- February 1, 2017 at 3:21 pm
Hello, There are also melanoma oncologist and dermatologist at University Hospital in Cleveland and if there are trials sometimes Cleveland Clinic may be doing or University may have it. They will refer you to the other hospital as they try to do different trials so they cover more trials. Either way they both work together. At University our surgeon talked with the other surgeons in a group meeting to discuss my husbands case and they all chimed in as to what they thought would work.
Hope this helps. My husband started his melanoma journey in 2008 and became NED in 2012 and has remained that way. If you would like more info on him check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4.5 years.
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- February 1, 2017 at 3:35 pm
Thanks guys i guess what scarred us most is that doc said at best its stage three and sense my fiance has has a cough for a few months that made the doctor worry anymore of course i was the one to bring it up because he told doc he feels perfectly fine and its just a cold . but colds dont last that long haja. Its all very nerve racking the oncologist said there are three immunotherapys that they like to do but the one that has has shown the best results is the one that many people have a hard time handleing i cant think of name at moment but because he has a good health record and is only 39 he said hes a good canidate. I think it was interferon -
- February 1, 2017 at 3:35 pm
Thanks guys i guess what scarred us most is that doc said at best its stage three and sense my fiance has has a cough for a few months that made the doctor worry anymore of course i was the one to bring it up because he told doc he feels perfectly fine and its just a cold . but colds dont last that long haja. Its all very nerve racking the oncologist said there are three immunotherapys that they like to do but the one that has has shown the best results is the one that many people have a hard time handleing i cant think of name at moment but because he has a good health record and is only 39 he said hes a good canidate. I think it was interferon -
- February 1, 2017 at 4:55 pm
Interferon is a very old drug that many docs don't give anymore due to studies showing that it has proven close to no benefit. The drug that the doc might have been talking about is Yervoy, that's an immunotherapy that a lot of people tend to have a hard time tolerating and have to stop after a couple infusions. But, it's not a given, and I did just fine on it, and many others have too. A melanoma specialist will not recommend interferon.. so that should just be taken off the table in my opinion.
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- February 1, 2017 at 4:55 pm
Interferon is a very old drug that many docs don't give anymore due to studies showing that it has proven close to no benefit. The drug that the doc might have been talking about is Yervoy, that's an immunotherapy that a lot of people tend to have a hard time tolerating and have to stop after a couple infusions. But, it's not a given, and I did just fine on it, and many others have too. A melanoma specialist will not recommend interferon.. so that should just be taken off the table in my opinion.
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- February 2, 2017 at 12:35 am
With the one your on is there bad side affects? Are you able to manage a normal work/life routine? -
- February 2, 2017 at 12:35 am
With the one your on is there bad side affects? Are you able to manage a normal work/life routine? -
- February 2, 2017 at 12:35 am
With the one your on is there bad side affects? Are you able to manage a normal work/life routine? -
- February 2, 2017 at 4:16 am
I did Yervoy for stage 3 last year, the dosage is higher for adjuvant at 10mg/kg, and had no side effects other than fatigue, some joint pain, eczema flare ups, all mild stuff and was able to work and go about regular daily life. In September I had a scan that showed the melanoma was back, so that's why I changed to what I am on now which still involves Yervoy, but at a lower dosage, and Opdivo, both immunotherapies. I have had 4 infusions, same thing, not many side effects. Last infusion brought on a couple weeks of fevers and feeling pretty crappy, so I took some time off work for that, but I'm back to normal now and going in tomorrow for an infusion. Everyone's body's react so differently to these drugs, some folks like myself tolerate them fine and don't deal with many side effects. Other people have had a harder time and deal with side effects that need treating separately. A melanoma specialist is incredibly important for this reason. They will know what type of side effects to look for and know how to treat them so to diminish the chance of permanent issues.
I have a timeline of my treatment and the different side effects I have encountered along the way in my profile if you want more of a look into what the year after my stage 3 diagnosis looked like.
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- February 2, 2017 at 4:16 am
I did Yervoy for stage 3 last year, the dosage is higher for adjuvant at 10mg/kg, and had no side effects other than fatigue, some joint pain, eczema flare ups, all mild stuff and was able to work and go about regular daily life. In September I had a scan that showed the melanoma was back, so that's why I changed to what I am on now which still involves Yervoy, but at a lower dosage, and Opdivo, both immunotherapies. I have had 4 infusions, same thing, not many side effects. Last infusion brought on a couple weeks of fevers and feeling pretty crappy, so I took some time off work for that, but I'm back to normal now and going in tomorrow for an infusion. Everyone's body's react so differently to these drugs, some folks like myself tolerate them fine and don't deal with many side effects. Other people have had a harder time and deal with side effects that need treating separately. A melanoma specialist is incredibly important for this reason. They will know what type of side effects to look for and know how to treat them so to diminish the chance of permanent issues.
I have a timeline of my treatment and the different side effects I have encountered along the way in my profile if you want more of a look into what the year after my stage 3 diagnosis looked like.
-
- February 2, 2017 at 4:16 am
I did Yervoy for stage 3 last year, the dosage is higher for adjuvant at 10mg/kg, and had no side effects other than fatigue, some joint pain, eczema flare ups, all mild stuff and was able to work and go about regular daily life. In September I had a scan that showed the melanoma was back, so that's why I changed to what I am on now which still involves Yervoy, but at a lower dosage, and Opdivo, both immunotherapies. I have had 4 infusions, same thing, not many side effects. Last infusion brought on a couple weeks of fevers and feeling pretty crappy, so I took some time off work for that, but I'm back to normal now and going in tomorrow for an infusion. Everyone's body's react so differently to these drugs, some folks like myself tolerate them fine and don't deal with many side effects. Other people have had a harder time and deal with side effects that need treating separately. A melanoma specialist is incredibly important for this reason. They will know what type of side effects to look for and know how to treat them so to diminish the chance of permanent issues.
I have a timeline of my treatment and the different side effects I have encountered along the way in my profile if you want more of a look into what the year after my stage 3 diagnosis looked like.
-
- February 1, 2017 at 4:55 pm
Interferon is a very old drug that many docs don't give anymore due to studies showing that it has proven close to no benefit. The drug that the doc might have been talking about is Yervoy, that's an immunotherapy that a lot of people tend to have a hard time tolerating and have to stop after a couple infusions. But, it's not a given, and I did just fine on it, and many others have too. A melanoma specialist will not recommend interferon.. so that should just be taken off the table in my opinion.
-
- February 1, 2017 at 3:35 pm
Thanks guys i guess what scarred us most is that doc said at best its stage three and sense my fiance has has a cough for a few months that made the doctor worry anymore of course i was the one to bring it up because he told doc he feels perfectly fine and its just a cold . but colds dont last that long haja. Its all very nerve racking the oncologist said there are three immunotherapys that they like to do but the one that has has shown the best results is the one that many people have a hard time handleing i cant think of name at moment but because he has a good health record and is only 39 he said hes a good canidate. I think it was interferon
-
- February 1, 2017 at 3:21 pm
Hello, There are also melanoma oncologist and dermatologist at University Hospital in Cleveland and if there are trials sometimes Cleveland Clinic may be doing or University may have it. They will refer you to the other hospital as they try to do different trials so they cover more trials. Either way they both work together. At University our surgeon talked with the other surgeons in a group meeting to discuss my husbands case and they all chimed in as to what they thought would work.
Hope this helps. My husband started his melanoma journey in 2008 and became NED in 2012 and has remained that way. If you would like more info on him check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4.5 years.
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Tagged: cutaneous melanoma
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