Stage IIIA – need to decide on treatment or observation – advice?

Hi Ayn, sorry you have had to join us.  I was dx Jan. 2010, also 3A.  Those were the choices I was given (even here in the U.S. ) and truthfully it's a very personal decision whether or not to go with interferon.  I chose to wait and watch, doing scans every 3 months. 

My reasoning was that from what I was told interferon only helped 3-7% of the folks and did not change the survivability.  The last statement was crucial.  Why go through being so sick, if very low odds and and not change in how much longer you live.  Just didn't seem like a winner to me.  NOW 15 MONTHS NED.

I know some of the folks from Canada have found other options but not sure if any are 3a, I'm sure you'll hear from them.

Good Luck,

Mary

Hi Ayn, sorry you have had to join us.  I was dx Jan. 2010, also 3A.  Those were the choices I was given (even here in the U.S. ) and truthfully it's a very personal decision whether or not to go with interferon.  I chose to wait and watch, doing scans every 3 months. 

My reasoning was that from what I was told interferon only helped 3-7% of the folks and did not change the survivability.  The last statement was crucial.  Why go through being so sick, if very low odds and and not change in how much longer you live.  Just didn't seem like a winner to me.  NOW 15 MONTHS NED.

I know some of the folks from Canada have found other options but not sure if any are 3a, I'm sure you'll hear from them.

Good Luck,

Mary

Hello Ayn – 

Although I am sure you don't want to be here, it is nice to meet you and welcome.  Your post caught my eye because my husband was 41 when he was diagnosed with IIIa almost 2 years ago.  They had a hard time deciding whether or not the "single cells" found in his lymph nodes were melanoma or not but they decided to error on the side of caution and go with the stage 3a diagnosis.  After reading the research on Interferon and due to his low tumor cell burden,  lower Breslow depth (1.3), and low mitotic rate,  he decided not to do interferon.  As you said it is a personal choice and many people have been successful with the drug.  I hope you will study your pathology and read the research.  You will find that observation and interferon are almost equal in the results of recurrence free survival and overall survival.  

There are very few clinical trials available for Stage 3a but you can try looking at clinicaltrials.gov…the only one that comes to mind is the Yervoy/Ipi adjuvant trial.  This is a placebo arm trial and you must start within a certain amount of time after lymph node dissection.   The results of this trial will most likely determine if Ipi will be used for adjuvant therapy in resectable stage 3 melanoma but that wont be until 2014.  Stage 3 NED is a frustrating place to be for those who dont qualify for trials and aren't comfortable with observation.  

All my best to you,

Emily

Hello Ayn – 

Although I am sure you don't want to be here, it is nice to meet you and welcome.  Your post caught my eye because my husband was 41 when he was diagnosed with IIIa almost 2 years ago.  They had a hard time deciding whether or not the "single cells" found in his lymph nodes were melanoma or not but they decided to error on the side of caution and go with the stage 3a diagnosis.  After reading the research on Interferon and due to his low tumor cell burden,  lower Breslow depth (1.3), and low mitotic rate,  he decided not to do interferon.  As you said it is a personal choice and many people have been successful with the drug.  I hope you will study your pathology and read the research.  You will find that observation and interferon are almost equal in the results of recurrence free survival and overall survival.  

There are very few clinical trials available for Stage 3a but you can try looking at clinicaltrials.gov…the only one that comes to mind is the Yervoy/Ipi adjuvant trial.  This is a placebo arm trial and you must start within a certain amount of time after lymph node dissection.   The results of this trial will most likely determine if Ipi will be used for adjuvant therapy in resectable stage 3 melanoma but that wont be until 2014.  Stage 3 NED is a frustrating place to be for those who dont qualify for trials and aren't comfortable with observation.  

All my best to you,

Emily

Hello Ayn,

I was diagnosed as Stage 3A in 2007, and my surgeon suggested the observation approach.  He was not convinced that interferon made a significant difference.   I had monthly checkups initially and this has been extended over time to every 6 months.  So far, so good.  I guess time will tell if I made the right decision.

Good luck!

Mike

Hello Ayn,

I was diagnosed as Stage 3A in 2007, and my surgeon suggested the observation approach.  He was not convinced that interferon made a significant difference.   I had monthly checkups initially and this has been extended over time to every 6 months.  So far, so good.  I guess time will tell if I made the right decision.

Good luck!

Mike

Hi Ayn,

I am faced with the same dilemma-I am scheduled to meet an oncologist chematologist on Thuesday to disscus further treatment after an surgery to remove the primary tumor and a reoccurence found 10 months later.

I am pretty sure Interferon will be offered and I did research on the drug-it is a very toxic drug with severe side effects but minimum effectiveness that only helps 1 in 9 people to delay reocurrence by 13 months in average.

Some people have chosen to do  it and are still NED;others have done it too and   and had reocurrences anyway;so it is not clear if the drug did any good or it was the individual"s immune system/genetics.

Anyway this drug can  affect  the central nervous system;it should never ever be taken by  people with history of depression/anxiety disorders/panic attacks-I am in the category- as it can induce severe psychiatric disorders.

The frustrating thing is that there is very little beside it  on the table to offer for stage 3.

Yervoy/Ipi clinical compassionate trials for stage 3 are offered in some leading Cancer Centers in US but I believe that  there are including/excluding criterias depending on you individual case,staging, presence/absence of active disease  and medical history.

It is a very personal choice as mentioned already by my fellow melanoma warriors and if you thing you are strong enough mentally and physically people said Interferon is doable;just not for me.And you know yourself better than anybody else.

Best regards,

Teodora

Hi Ayn,

I am faced with the same dilemma-I am scheduled to meet an oncologist chematologist on Thuesday to disscus further treatment after an surgery to remove the primary tumor and a reoccurence found 10 months later.

I am pretty sure Interferon will be offered and I did research on the drug-it is a very toxic drug with severe side effects but minimum effectiveness that only helps 1 in 9 people to delay reocurrence by 13 months in average.

Some people have chosen to do  it and are still NED;others have done it too and   and had reocurrences anyway;so it is not clear if the drug did any good or it was the individual"s immune system/genetics.

Anyway this drug can  affect  the central nervous system;it should never ever be taken by  people with history of depression/anxiety disorders/panic attacks-I am in the category- as it can induce severe psychiatric disorders.

The frustrating thing is that there is very little beside it  on the table to offer for stage 3.

Yervoy/Ipi clinical compassionate trials for stage 3 are offered in some leading Cancer Centers in US but I believe that  there are including/excluding criterias depending on you individual case,staging, presence/absence of active disease  and medical history.

It is a very personal choice as mentioned already by my fellow melanoma warriors and if you thing you are strong enough mentally and physically people said Interferon is doable;just not for me.And you know yourself better than anybody else.

Best regards,

Teodora

 I opted for INF because I wanted to feel as though I was doing something.  My thought process was that INF was being offered now, if it did come back, I can't say I didn't try. My year was not great, but I was able to teach part time. I combed the internet and found lots of not so good stories about the side effects, but I did find one good story of a guy who sailed right through. That was all I needed…if he could do it, I could do it. They are now saying the month treatment is as effective as the year treatment. If you choose this route, you will need help with your children as some days you may not feel up to it.

You have to trust that you will make the best decision for you. Unfortunately for us, there is no one answer or magic pill.  I am almost 5 years out. Did INF help? Who knows. Am I happy I did it? Yes.

 I opted for INF because I wanted to feel as though I was doing something.  My thought process was that INF was being offered now, if it did come back, I can't say I didn't try. My year was not great, but I was able to teach part time. I combed the internet and found lots of not so good stories about the side effects, but I did find one good story of a guy who sailed right through. That was all I needed…if he could do it, I could do it. They are now saying the month treatment is as effective as the year treatment. If you choose this route, you will need help with your children as some days you may not feel up to it.

You have to trust that you will make the best decision for you. Unfortunately for us, there is no one answer or magic pill.  I am almost 5 years out. Did INF help? Who knows. Am I happy I did it? Yes.

I was diagnosed 3C back in 11/07. I was offered a clinical trial with Ipi/Yervoy and vaccines. I know not everyone is a responder with Ipi but it boosted my immune system at least 5 times over baseline. I did the trial with resected melanoma. I'm on a hormone replacement as Ipi affected the pituitary function but I've been NED and no recurrences.

 God Bless,

 Jim M.

 stage 3C

 NED: 3years, 7 months

I was diagnosed 3C back in 11/07. I was offered a clinical trial with Ipi/Yervoy and vaccines. I know not everyone is a responder with Ipi but it boosted my immune system at least 5 times over baseline. I did the trial with resected melanoma. I'm on a hormone replacement as Ipi affected the pituitary function but I've been NED and no recurrences.

 God Bless,

 Jim M.

 stage 3C

 NED: 3years, 7 months

Hi Ayn,

I chose to do interferon as I felt like I needed to do "something" to fight.  I am the mom of 3 young children and 'watch and wait' did not suit me.  The first month of interferon was pretty brutal and I had to be taken off twice because of low wbc and liver issues.  I then did self injection 3x a week.  In my 2nd month I had a recurrence and had to have surgery and came off the interferon.

I'm not sure what I would do if I went back and was offered the same options again.  That is why you are getting so many opinions.  It truly is a very personal decision for you and your family.  Actually, I would probably choose the same route – I don't know if I could not have done "something" if it was offered.  I don't know…

Either way, good luck with your decision.  If you opt to do interferon, post back and get advice from those who have done it so we may offer some advice to get you through.

Best wishes,

Laurie

Hi Ayn,

I chose to do interferon as I felt like I needed to do "something" to fight.  I am the mom of 3 young children and 'watch and wait' did not suit me.  The first month of interferon was pretty brutal and I had to be taken off twice because of low wbc and liver issues.  I then did self injection 3x a week.  In my 2nd month I had a recurrence and had to have surgery and came off the interferon.

I'm not sure what I would do if I went back and was offered the same options again.  That is why you are getting so many opinions.  It truly is a very personal decision for you and your family.  Actually, I would probably choose the same route – I don't know if I could not have done "something" if it was offered.  I don't know…

Either way, good luck with your decision.  If you opt to do interferon, post back and get advice from those who have done it so we may offer some advice to get you through.

Best wishes,

Laurie

Hi there,

It is definitely a personal decision.  My hubby is stage 2C, and was offered interferon due to the depth of his melanoma.  He decided to do it, and has done 4 months of the 3x/week injections, so I can tell you how it's been for him so far.  The month of high dose was pretty hard, but not unbearable.  He worked for 5 hours, came home to take a nap, and then went in the afternoon to the hospital.  He slept alot, had headaches, a little nausea at first, but overall it was just the fatigue.  Now that he has been having the shots for 4 months, he is just very tired, and sometimes  gets headaches in the evening after a shot.  He's working full time but pretty much wears himself out at work, and then sleeps when he gets home.  His appetite has gone down alot, and he has lost probably 30 lbs so far.  Luckily he had weight to lose, but it's getting to the point where I'm kind of getting worried about that.  We have a 1-yr old and he still makes time to spend with him, but Saturdays are probably his worst day, and Sunday is the day we try to go out and do stuff since he's usually the least tired on those days. 

Overall, he knows about the limited effectiveness, but feels that so far it is not unbearable.  Whether or not he completes the whole 11 months, we'll see.  Good luck in whatever you choose.,

Hi there,

It is definitely a personal decision.  My hubby is stage 2C, and was offered interferon due to the depth of his melanoma.  He decided to do it, and has done 4 months of the 3x/week injections, so I can tell you how it's been for him so far.  The month of high dose was pretty hard, but not unbearable.  He worked for 5 hours, came home to take a nap, and then went in the afternoon to the hospital.  He slept alot, had headaches, a little nausea at first, but overall it was just the fatigue.  Now that he has been having the shots for 4 months, he is just very tired, and sometimes  gets headaches in the evening after a shot.  He's working full time but pretty much wears himself out at work, and then sleeps when he gets home.  His appetite has gone down alot, and he has lost probably 30 lbs so far.  Luckily he had weight to lose, but it's getting to the point where I'm kind of getting worried about that.  We have a 1-yr old and he still makes time to spend with him, but Saturdays are probably his worst day, and Sunday is the day we try to go out and do stuff since he's usually the least tired on those days. 

Overall, he knows about the limited effectiveness, but feels that so far it is not unbearable.  Whether or not he completes the whole 11 months, we'll see.  Good luck in whatever you choose.,

My heart goes out to you. Most of us are in a stage of shock and disbelief after the initial diagnosis. I was diagnosed with Stage IIIB melanoma in 04/11. The options at this stage are not optimal. There is interferon of course. GM CSF was given at some centers. There were some studies on Ipilimumab the time. It was difficult understanding I’d be subject to randomization. I spoke to 3 oncologists before settling on Interferon. I know how to interpret the medical literature. I did the full year of interferon. I. Have a desk job. I found myself having to take a nap at lunch but was able to get through the day. I sit here 2 years later without a recurrence and with each passing day the odds get better. It is a very personal decision. Is the interferon the reason I am disease free today? I’ll never know. I never regretted the decision to do the interferon. I could not sit back and wait for things to happen. I could not live with myself saying “coulda or shoulda”. Whatever decision you make, close the door on it. Live life to the fullest and don’t allow the disease to define you.

My heart goes out to you. Most of us are in a stage of shock and disbelief after the initial diagnosis. I was diagnosed with Stage IIIB melanoma in 04/11. The options at this stage are not optimal. There is interferon of course. GM CSF was given at some centers. There were some studies on Ipilimumab the time. It was difficult understanding I’d be subject to randomization. I spoke to 3 oncologists before settling on Interferon. I know how to interpret the medical literature. I did the full year of interferon. I. Have a desk job. I found myself having to take a nap at lunch but was able to get through the day. I sit here 2 years later without a recurrence and with each passing day the odds get better. It is a very personal decision. Is the interferon the reason I am disease free today? I’ll never know. I never regretted the decision to do the interferon. I could not sit back and wait for things to happen. I could not live with myself saying “coulda or shoulda”. Whatever decision you make, close the door on it. Live life to the fullest and don’t allow the disease to define you.