New to Board – Stage IIIa Treatment Questions and Quality of Life?

Lynn:

As you probably know, acral melanoma is rare and has a different genetic profile from other types of melanoma.  I suspect that is why no-one has weighed in in interferon yet!

The decision about interferon is highly personal, and you will find people on this board who feel strongly that it is the best thing to do while others feel just the opposite.  

Progression free survival is the amount of time between when a therapy begins and when tumors either grow or return.  In a large group of patients, divided into those who did and did not take interferon, the ones on interferon stayed "progression free" for a somewhat longer period of time–I believe about 3 to 5% longer.  However, if you look at how many people in these studies ultimately succumbed to melanoman, the numbers are about the same whether or not you took interferon.  

The problem with these studies is that they only say what has happened to a large group of people.  They say nothing about what will happen to you.

Do you know if you have the c-kit (see-kit) mutation?  It is very rare in cutaneous melanoma, but is fairly common in acral melanoma.  If you do have the mutation you may be eligible for some therepies that attack that mutation.

Tim–MRF

Lynn:

As you probably know, acral melanoma is rare and has a different genetic profile from other types of melanoma.  I suspect that is why no-one has weighed in in interferon yet!

The decision about interferon is highly personal, and you will find people on this board who feel strongly that it is the best thing to do while others feel just the opposite.  

Progression free survival is the amount of time between when a therapy begins and when tumors either grow or return.  In a large group of patients, divided into those who did and did not take interferon, the ones on interferon stayed "progression free" for a somewhat longer period of time–I believe about 3 to 5% longer.  However, if you look at how many people in these studies ultimately succumbed to melanoman, the numbers are about the same whether or not you took interferon.  

The problem with these studies is that they only say what has happened to a large group of people.  They say nothing about what will happen to you.

Do you know if you have the c-kit (see-kit) mutation?  It is very rare in cutaneous melanoma, but is fairly common in acral melanoma.  If you do have the mutation you may be eligible for some therepies that attack that mutation.

Tim–MRF

Lynn:

As you probably know, acral melanoma is rare and has a different genetic profile from other types of melanoma.  I suspect that is why no-one has weighed in in interferon yet!

The decision about interferon is highly personal, and you will find people on this board who feel strongly that it is the best thing to do while others feel just the opposite.  

Progression free survival is the amount of time between when a therapy begins and when tumors either grow or return.  In a large group of patients, divided into those who did and did not take interferon, the ones on interferon stayed "progression free" for a somewhat longer period of time–I believe about 3 to 5% longer.  However, if you look at how many people in these studies ultimately succumbed to melanoman, the numbers are about the same whether or not you took interferon.  

The problem with these studies is that they only say what has happened to a large group of people.  They say nothing about what will happen to you.

Do you know if you have the c-kit (see-kit) mutation?  It is very rare in cutaneous melanoma, but is fairly common in acral melanoma.  If you do have the mutation you may be eligible for some therepies that attack that mutation.

Tim–MRF

Lynn,

Sorry to hear of your diagnosis, but welcome to the site where you can get lots of good information and support from others who've been there.

The choice of whether to do interferon or not and if so, what type, is very personal and you will hear some very diverse views on it.  Just to give you my experience with it so far:  I chose to do a 6 month trial of pegylated interferon back in September and am 6 weeks away from finishing it.  My side-effects have not been too bad overall, mainly fatigue and some headaches.  I am now just starting to have some thyroid issues, but I have been able to work and travel (I travel quite a bit for work) througout. 

My thought to you would be that you can always stop the treatment if the effects on you are too bad.  Interferon affects everyone differently and since you are still young and healthy, you may not experience very many bad side-effects.  And if it starts affecting your lifestyle too badly, just stop.  You may also want to see if there are any alternatives to the 5-year peg plan, as there may be possibilities to do it for less time.

But in any case, it's you who need to be comfortable with the decision. I wish you the best in making the one that will work for you and hope all goes well for you.

Elisa

Lynn,

Sorry to hear of your diagnosis, but welcome to the site where you can get lots of good information and support from others who've been there.

The choice of whether to do interferon or not and if so, what type, is very personal and you will hear some very diverse views on it.  Just to give you my experience with it so far:  I chose to do a 6 month trial of pegylated interferon back in September and am 6 weeks away from finishing it.  My side-effects have not been too bad overall, mainly fatigue and some headaches.  I am now just starting to have some thyroid issues, but I have been able to work and travel (I travel quite a bit for work) througout. 

My thought to you would be that you can always stop the treatment if the effects on you are too bad.  Interferon affects everyone differently and since you are still young and healthy, you may not experience very many bad side-effects.  And if it starts affecting your lifestyle too badly, just stop.  You may also want to see if there are any alternatives to the 5-year peg plan, as there may be possibilities to do it for less time.

But in any case, it's you who need to be comfortable with the decision. I wish you the best in making the one that will work for you and hope all goes well for you.

Elisa

Lynn,

Sorry to hear of your diagnosis, but welcome to the site where you can get lots of good information and support from others who've been there.

The choice of whether to do interferon or not and if so, what type, is very personal and you will hear some very diverse views on it.  Just to give you my experience with it so far:  I chose to do a 6 month trial of pegylated interferon back in September and am 6 weeks away from finishing it.  My side-effects have not been too bad overall, mainly fatigue and some headaches.  I am now just starting to have some thyroid issues, but I have been able to work and travel (I travel quite a bit for work) througout. 

My thought to you would be that you can always stop the treatment if the effects on you are too bad.  Interferon affects everyone differently and since you are still young and healthy, you may not experience very many bad side-effects.  And if it starts affecting your lifestyle too badly, just stop.  You may also want to see if there are any alternatives to the 5-year peg plan, as there may be possibilities to do it for less time.

But in any case, it's you who need to be comfortable with the decision. I wish you the best in making the one that will work for you and hope all goes well for you.

Elisa

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi

Hi Lynn,

My husband (now 69 yrs old) was diagnosed in March 2010 with acral lentiginous melanoma.  His melanoma was under the great toe.  The tumor was large, over 11 mm; his toe was amputated and he had a sentinal lymph node biopsy.  Luckily, there was no evidence of cancer in the lymph node.  Also, Pet and CT scans did not shown any evidence of spread.  My husband's tumor was negative for CKit and the Braf mutation, so his only option of treatment was Interferon.  His melanoma specialist, Dr. Rene Gonzales, recommended Interferon for one month only.  According to Dr. Gonzales and the other melanoma specialists at the University of Denver, there is no statistical advantage of doing Interferon for one year vs. the high dose for one month.  My husband tolerated the treatment as expected.  Every day after the treatment he had a fever and and was very tired, but during the weekends he usually recovered fairly well.  He has had CT scans every six months and so far there is no evidence of disease. His next scan is scheduled for May 2012. 

I know it is a difficult decision to make as far as the Interferon treatment.  However, in my husband's case there was nothing else available, and he felt better doing something instead of watch and wait.  Since his tumor was over 11 mm deep, he is a stage 2C.

Heidi