› Forums › General Melanoma Community › New to board-need advice
- This topic has 24 replies, 5 voices, and was last updated 11 years, 12 months ago by
Benpotts.
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- September 6, 2013 at 3:42 am
My husband had what doctors thought was a cyst removed on his leg in late may. Two weeks later he was told it may be melanoma!
We were referred to a surgical oncologist at MGH who removed the tumor and was confident the margins were clear ( he did no
Lymph node testing). The tumor was large and thick and after meeting with a melanoma specialist it was determined to be a melanoma
With an unknown primary. He had PET and CT scans all were clear.. he tested BRaf negative. They recommended either interferon or a clinical
Trial currently going on for high dose yervoy (10 mg?) We got a second opinion at Dana farber and they feel the same. Dana just repeated all scans
And a brain MRI -NED. The high dose Yervoy trial has been having a few incidence of bad side effects (colostomy-even 2 deaths!) we are starting to have our doubts about trial. We know melanoma is a terrible disease but none of these treatments seem to be a cure. Given no recurrence, or evidence of disease we are nervous about quality of life. We know interferon is no picnic but, we are scared of the high dose trial!! He is not eligible for the lower dose because he has no identifiable tumors or mets. Is anyone out there in the same predicament?? He has to start the trial on Tuesday so any info would be much appreciated!!!!
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- September 6, 2013 at 4:13 am
Yes, Ipi (Yervoy) can have intense side effects on some. Some have the treatment with very few side effects. One has fair odds if the treatments are provide by an Ipi experienced Onc & staff. Do quickly report any thing that even appears to be a problem. With an unknown primary the tumo mtissue should also be tested for c-kit and possbly NRAS mutations. The Yervoy is the most likely of the two choices to provide a longer disease free time. 9Possibly approching a cure.
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- September 6, 2013 at 4:13 am
Yes, Ipi (Yervoy) can have intense side effects on some. Some have the treatment with very few side effects. One has fair odds if the treatments are provide by an Ipi experienced Onc & staff. Do quickly report any thing that even appears to be a problem. With an unknown primary the tumo mtissue should also be tested for c-kit and possbly NRAS mutations. The Yervoy is the most likely of the two choices to provide a longer disease free time. 9Possibly approching a cure.
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- September 6, 2013 at 4:13 am
Yes, Ipi (Yervoy) can have intense side effects on some. Some have the treatment with very few side effects. One has fair odds if the treatments are provide by an Ipi experienced Onc & staff. Do quickly report any thing that even appears to be a problem. With an unknown primary the tumo mtissue should also be tested for c-kit and possbly NRAS mutations. The Yervoy is the most likely of the two choices to provide a longer disease free time. 9Possibly approching a cure.
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- September 6, 2013 at 11:03 am
I am a little confused by you saying an "unknown primary". If a "cyst" was removed and tested positive for melanoma, isn't that the primary? And if it was "thick", didn't they give you an exact size? Seems like the only missing link is the SNB and no lymph node involvement is known.
Many people have zero side effects from yervoy. Few have some serious ones.
I am also confused about not having a tumor in order to have low dose. I know the trials I have seen do not have that requirement. There are three arms to the trial – interferon, low dose and high dose. It is simply the luck of the draw as to which one you get.
Personally, from all I have seen, I would choose "wait and watch" over interferon.
I agree with the previous answer, yervoy is a good choice for many.
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- September 6, 2013 at 11:03 am
I am a little confused by you saying an "unknown primary". If a "cyst" was removed and tested positive for melanoma, isn't that the primary? And if it was "thick", didn't they give you an exact size? Seems like the only missing link is the SNB and no lymph node involvement is known.
Many people have zero side effects from yervoy. Few have some serious ones.
I am also confused about not having a tumor in order to have low dose. I know the trials I have seen do not have that requirement. There are three arms to the trial – interferon, low dose and high dose. It is simply the luck of the draw as to which one you get.
Personally, from all I have seen, I would choose "wait and watch" over interferon.
I agree with the previous answer, yervoy is a good choice for many.
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- September 6, 2013 at 11:03 am
I am a little confused by you saying an "unknown primary". If a "cyst" was removed and tested positive for melanoma, isn't that the primary? And if it was "thick", didn't they give you an exact size? Seems like the only missing link is the SNB and no lymph node involvement is known.
Many people have zero side effects from yervoy. Few have some serious ones.
I am also confused about not having a tumor in order to have low dose. I know the trials I have seen do not have that requirement. There are three arms to the trial – interferon, low dose and high dose. It is simply the luck of the draw as to which one you get.
Personally, from all I have seen, I would choose "wait and watch" over interferon.
I agree with the previous answer, yervoy is a good choice for many.
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- September 6, 2013 at 1:33 pm
The "cyst" was a tumor – they believe the "primary" may have been on his skin and either removed and misdiagnosed or his system fought the original melanoma (happens in about 10% of melanoma cases).
He has been accepted into this trial and was randomized to the high dose yervoy already – so now we need to decide if thats what we want to do. The trial has been having a much higher incidence of serious side effects – given the dose is over 3 times the "normal" dose given to those with active tumors.
Sorry – I'm not a doctor and not being too technical here – but, hopefully, you get the idea!
Thanks for your response!
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- September 6, 2013 at 1:56 pm
Hi,
Sorry you had to join this board but it is a good one for getting information and support.
My husband started the high dose Ipi Clinical Trial in March 2011. His trial was high dose for one arm or high dose with GMCSF. He got the High dose with the GMCSF arm. The first 4 doses given in 12 weeks and then into maintenance every 12 weeks since. The GMCSF is give self injections on 14 days none for 7 days the whole 2 1/2 years. About 11 months ago he became NED (no evidence of disease). He has not had a lot of side effects just some itching, fatigue for a day or two after infusions, white eyebrows, loss of skin pigmentation on face and neck. He was stage IV with tumors in the lungs, liver, one pressing on the cervical spine at C1-C2 non resectable and 3 sub q's. If you want to read more check out his profile. He also managed to work through some of this except when he had detached retina surgeries (5 in one eye).
Yes some do have severe side effects but not all people respond to things the same as others in every clinical trial or just the medicines they are using.
Judy (loving wife of Gene – Stage IV and now NED)
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- September 12, 2013 at 8:32 pm
Hi Judy
I'm new to here, reading your story has just gave me something positive, my dad has been diagnosed with the same as your husband and has his first appointment tomorrow with oncology to hopefully discuss treatment etc, he was a healthy 70 year old 6 weeks ago, went to the gym 3 times a week, now he his so weak just making a meal wear's him out, I am really worried but story has given me a little hope. thankyou. Teresa
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- September 12, 2013 at 8:32 pm
Hi Judy
I'm new to here, reading your story has just gave me something positive, my dad has been diagnosed with the same as your husband and has his first appointment tomorrow with oncology to hopefully discuss treatment etc, he was a healthy 70 year old 6 weeks ago, went to the gym 3 times a week, now he his so weak just making a meal wear's him out, I am really worried but story has given me a little hope. thankyou. Teresa
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- September 12, 2013 at 8:32 pm
Hi Judy
I'm new to here, reading your story has just gave me something positive, my dad has been diagnosed with the same as your husband and has his first appointment tomorrow with oncology to hopefully discuss treatment etc, he was a healthy 70 year old 6 weeks ago, went to the gym 3 times a week, now he his so weak just making a meal wear's him out, I am really worried but story has given me a little hope. thankyou. Teresa
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- September 6, 2013 at 6:13 pm
Most of the earlier trials for the anti-CTLA-4 was at the 10 mg dosage. You can search this board in individual searches for (CTLA-4, 10 mg) (ipi, 10 mg) (Yervoy, 10 mg) as well as the trial numbers you will run across. The 10 mg dosage was more effective against growing tumors, but GMS lowered the dosage to reduce the side effects for the final approval submission.
I suspect that part of this adjuvant study is the hope that healthier stage 3 people will have less side effects than the stage 4 people with heavier tumor loads. Something to discuss with the trial people.
While there is a higher chance of problems, there is a higher probability of succes as well.
It is your choice as to what ya'll feel is best for your case and whether wait and watch versus how pro-active you feel you need to be.
You are checking things out and learning, this is good. If you have't yet, you might like to visit Catherine's bb at http://melanomainternational.org/
http://www.translational-medicine.com/content/9/1/196
http://en.wikipedia.org/wiki/Ipilimumab
http://packageinserts.bms.com/pi/pi_yervoy.pdf
https://www.hcp.yervoy.com/pages/index.aspx
Wishing you success!
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- September 6, 2013 at 6:13 pm
Most of the earlier trials for the anti-CTLA-4 was at the 10 mg dosage. You can search this board in individual searches for (CTLA-4, 10 mg) (ipi, 10 mg) (Yervoy, 10 mg) as well as the trial numbers you will run across. The 10 mg dosage was more effective against growing tumors, but GMS lowered the dosage to reduce the side effects for the final approval submission.
I suspect that part of this adjuvant study is the hope that healthier stage 3 people will have less side effects than the stage 4 people with heavier tumor loads. Something to discuss with the trial people.
While there is a higher chance of problems, there is a higher probability of succes as well.
It is your choice as to what ya'll feel is best for your case and whether wait and watch versus how pro-active you feel you need to be.
You are checking things out and learning, this is good. If you have't yet, you might like to visit Catherine's bb at http://melanomainternational.org/
http://www.translational-medicine.com/content/9/1/196
http://en.wikipedia.org/wiki/Ipilimumab
http://packageinserts.bms.com/pi/pi_yervoy.pdf
https://www.hcp.yervoy.com/pages/index.aspx
Wishing you success!
-
- September 6, 2013 at 6:13 pm
Most of the earlier trials for the anti-CTLA-4 was at the 10 mg dosage. You can search this board in individual searches for (CTLA-4, 10 mg) (ipi, 10 mg) (Yervoy, 10 mg) as well as the trial numbers you will run across. The 10 mg dosage was more effective against growing tumors, but GMS lowered the dosage to reduce the side effects for the final approval submission.
I suspect that part of this adjuvant study is the hope that healthier stage 3 people will have less side effects than the stage 4 people with heavier tumor loads. Something to discuss with the trial people.
While there is a higher chance of problems, there is a higher probability of succes as well.
It is your choice as to what ya'll feel is best for your case and whether wait and watch versus how pro-active you feel you need to be.
You are checking things out and learning, this is good. If you have't yet, you might like to visit Catherine's bb at http://melanomainternational.org/
http://www.translational-medicine.com/content/9/1/196
http://en.wikipedia.org/wiki/Ipilimumab
http://packageinserts.bms.com/pi/pi_yervoy.pdf
https://www.hcp.yervoy.com/pages/index.aspx
Wishing you success!
-
- September 6, 2013 at 1:33 pm
The "cyst" was a tumor – they believe the "primary" may have been on his skin and either removed and misdiagnosed or his system fought the original melanoma (happens in about 10% of melanoma cases).
He has been accepted into this trial and was randomized to the high dose yervoy already – so now we need to decide if thats what we want to do. The trial has been having a much higher incidence of serious side effects – given the dose is over 3 times the "normal" dose given to those with active tumors.
Sorry – I'm not a doctor and not being too technical here – but, hopefully, you get the idea!
Thanks for your response!
-
- September 6, 2013 at 1:33 pm
The "cyst" was a tumor – they believe the "primary" may have been on his skin and either removed and misdiagnosed or his system fought the original melanoma (happens in about 10% of melanoma cases).
He has been accepted into this trial and was randomized to the high dose yervoy already – so now we need to decide if thats what we want to do. The trial has been having a much higher incidence of serious side effects – given the dose is over 3 times the "normal" dose given to those with active tumors.
Sorry – I'm not a doctor and not being too technical here – but, hopefully, you get the idea!
Thanks for your response!
-
- September 6, 2013 at 1:56 pm
Hi,
Sorry you had to join this board but it is a good one for getting information and support.
My husband started the high dose Ipi Clinical Trial in March 2011. His trial was high dose for one arm or high dose with GMCSF. He got the High dose with the GMCSF arm. The first 4 doses given in 12 weeks and then into maintenance every 12 weeks since. The GMCSF is give self injections on 14 days none for 7 days the whole 2 1/2 years. About 11 months ago he became NED (no evidence of disease). He has not had a lot of side effects just some itching, fatigue for a day or two after infusions, white eyebrows, loss of skin pigmentation on face and neck. He was stage IV with tumors in the lungs, liver, one pressing on the cervical spine at C1-C2 non resectable and 3 sub q's. If you want to read more check out his profile. He also managed to work through some of this except when he had detached retina surgeries (5 in one eye).
Yes some do have severe side effects but not all people respond to things the same as others in every clinical trial or just the medicines they are using.
Judy (loving wife of Gene – Stage IV and now NED)
-
- September 6, 2013 at 1:56 pm
Hi,
Sorry you had to join this board but it is a good one for getting information and support.
My husband started the high dose Ipi Clinical Trial in March 2011. His trial was high dose for one arm or high dose with GMCSF. He got the High dose with the GMCSF arm. The first 4 doses given in 12 weeks and then into maintenance every 12 weeks since. The GMCSF is give self injections on 14 days none for 7 days the whole 2 1/2 years. About 11 months ago he became NED (no evidence of disease). He has not had a lot of side effects just some itching, fatigue for a day or two after infusions, white eyebrows, loss of skin pigmentation on face and neck. He was stage IV with tumors in the lungs, liver, one pressing on the cervical spine at C1-C2 non resectable and 3 sub q's. If you want to read more check out his profile. He also managed to work through some of this except when he had detached retina surgeries (5 in one eye).
Yes some do have severe side effects but not all people respond to things the same as others in every clinical trial or just the medicines they are using.
Judy (loving wife of Gene – Stage IV and now NED)
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