Interferon – Relapse??

Hi Jeff's Mom,

It isn't fair and you have every reason to hate it.  I'm stage 3b, but I'm 51 years old and it's me and not my child.

I'm not responding to offer you advice because I have none to offer in your case as to treatment.  I do want to offer empathy and support.  Because I am 3b, I make my rounds twice a year to Duke Morris Cancer Clinic and see lots of young people with various cancers…we all do.  My last appt was Valentine's Day and I wrote the following immediately after getting home.  There may be some words of encouragement for you:

http://letsgivethanks.blogspot.com/2011/02/valentines-day-2011.html

There is also the Melanoma Prayer Center on facebook that I recently started and I try to post a prayer a day and have 3 notes so far that may be of support.  Feel free to drop by, it's there as a growing resource whether you became a friend or not.  You may find "About Sparrows" wrtten yesterday of interest.

Our friend, Janner here, has a great page of well organized melanoma resources that you may find helpful.

I know this isn't what you're looking for or asked for.  But if you ever want to contact someone who's a patient, a good listener, and someone you can vent to, feel free to contact me off board.  Cofidentiality goes with my job.

Grace and peace,

Carol stage 3b

Hi Jeff's Mom,

It isn't fair and you have every reason to hate it.  I'm stage 3b, but I'm 51 years old and it's me and not my child.

I'm not responding to offer you advice because I have none to offer in your case as to treatment.  I do want to offer empathy and support.  Because I am 3b, I make my rounds twice a year to Duke Morris Cancer Clinic and see lots of young people with various cancers…we all do.  My last appt was Valentine's Day and I wrote the following immediately after getting home.  There may be some words of encouragement for you:

http://letsgivethanks.blogspot.com/2011/02/valentines-day-2011.html

There is also the Melanoma Prayer Center on facebook that I recently started and I try to post a prayer a day and have 3 notes so far that may be of support.  Feel free to drop by, it's there as a growing resource whether you became a friend or not.  You may find "About Sparrows" wrtten yesterday of interest.

Our friend, Janner here, has a great page of well organized melanoma resources that you may find helpful.

I know this isn't what you're looking for or asked for.  But if you ever want to contact someone who's a patient, a good listener, and someone you can vent to, feel free to contact me off board.  Cofidentiality goes with my job.

Grace and peace,

Carol stage 3b

I know this isn't the answer you're looking for, but….  I was diagnosed Stage IIIc (14 malignant nodes) in 2003 and did biochemo at the University of Colorado Cancer Center.  Today I'm healthy and NED.  I chose to go "all in" at that stage because, from what I was hearing, 1) interferon would've improved my odds of avoiding progressing to Stage IV by about 5% and 2) biochemo works for very few Stage IV patients.  Plus, Ipi and PLX4032 didn't then exist as Stage IV treatment options.  My thoughts and prayers are with you and your son.  I've blogged about the lighter side of my long, strange journey as a patient at http://www.hotelmelanoma.blogspot.com.

I know this isn't the answer you're looking for, but….  I was diagnosed Stage IIIc (14 malignant nodes) in 2003 and did biochemo at the University of Colorado Cancer Center.  Today I'm healthy and NED.  I chose to go "all in" at that stage because, from what I was hearing, 1) interferon would've improved my odds of avoiding progressing to Stage IV by about 5% and 2) biochemo works for very few Stage IV patients.  Plus, Ipi and PLX4032 didn't then exist as Stage IV treatment options.  My thoughts and prayers are with you and your son.  I've blogged about the lighter side of my long, strange journey as a patient at http://www.hotelmelanoma.blogspot.com.

I was dx in 6/00 at stage 3 w/  mm on my back of 1.6 in depth and I had 1 sentinel node that was positive with microscopic amounts of mm. The remaining 17 nodes were all clean. I did a year of Interferon finishing in 8/01. I have remained NED this entire time (coming up on 11 years in June!) I have had 1 mole removed on the scar tissue that was in-situ but other than that have been healthy.

I was 34 when orig dx with kids 7 & 5. I was able to keep up with my normal routine the entire year, working 30 – 35 hours as an accountant and keeping up with my kids schedules. There absolutely were days I felt like crap and had a headache for almost the entire year. Although Interferon often gets characterized as being horrible, there are many of us who were able to manage the side effects. If nothing else, I would rather see someone try the one month before doing nothing. Was the Interfeon what has kept me NED? Am I just one of the lucky ones that surgery cured? Whichever it is, I'm thankful! 

Best of luck to your son and his family as they decide what is best for them. The one piece of advice I do have is once they decide on a treatment, stand behind it 110% and never look back. The "coulda, shoulda, woulda" game is one you will never win.

Take care!

Cara

I was dx in 6/00 at stage 3 w/  mm on my back of 1.6 in depth and I had 1 sentinel node that was positive with microscopic amounts of mm. The remaining 17 nodes were all clean. I did a year of Interferon finishing in 8/01. I have remained NED this entire time (coming up on 11 years in June!) I have had 1 mole removed on the scar tissue that was in-situ but other than that have been healthy.

I was 34 when orig dx with kids 7 & 5. I was able to keep up with my normal routine the entire year, working 30 – 35 hours as an accountant and keeping up with my kids schedules. There absolutely were days I felt like crap and had a headache for almost the entire year. Although Interferon often gets characterized as being horrible, there are many of us who were able to manage the side effects. If nothing else, I would rather see someone try the one month before doing nothing. Was the Interfeon what has kept me NED? Am I just one of the lucky ones that surgery cured? Whichever it is, I'm thankful! 

Best of luck to your son and his family as they decide what is best for them. The one piece of advice I do have is once they decide on a treatment, stand behind it 110% and never look back. The "coulda, shoulda, woulda" game is one you will never win.

Take care!

Cara

Jeff's Mom,

Sorry your son is going through so much. My husband had Stage III with lymph node involement back in 2007. He had a choice of Interferon or vaccine. Our Johns Hopkins onc told us that interferon was toxic and the benefits were not worth it. He did blood hla-a2 testing of my husband to get him over to NIH for their trials. I don't know where you live but that may be an option. Grant it my husband did the trial for vaccine and we don't know if it helped or not but getting into the trial was the best thing possible for us. He did a year of vaccine shots, did turn to stage IV with tumors in his lungs, but minimum. NIH was watching him so closely and they moved fast. They put him on IL-2 right away, he responded, then they did surgery. If that didn't work we would have moved on to whatever else was availabe in their medical cabinet, because they have the latest treatments.

The reason I feel so strongly that we made the right choice is because i felt the vaccine had more hope. The other side is NIH has really moved quickly whever we ran into a hurdle and if we did not get into that clinical trial we would owed a fortune in medical bills. Like your son, we had a 1 year old and 3 year old when this started and now they are 5 and 7.

I'm not saying take this path or that one, but your son should get at least a couple of opinions from the best melanoma oncs available. We went to 3 and decided on what to do.

Good luck.

Rebecca

Jeff's Mom,

Sorry your son is going through so much. My husband had Stage III with lymph node involement back in 2007. He had a choice of Interferon or vaccine. Our Johns Hopkins onc told us that interferon was toxic and the benefits were not worth it. He did blood hla-a2 testing of my husband to get him over to NIH for their trials. I don't know where you live but that may be an option. Grant it my husband did the trial for vaccine and we don't know if it helped or not but getting into the trial was the best thing possible for us. He did a year of vaccine shots, did turn to stage IV with tumors in his lungs, but minimum. NIH was watching him so closely and they moved fast. They put him on IL-2 right away, he responded, then they did surgery. If that didn't work we would have moved on to whatever else was availabe in their medical cabinet, because they have the latest treatments.

The reason I feel so strongly that we made the right choice is because i felt the vaccine had more hope. The other side is NIH has really moved quickly whever we ran into a hurdle and if we did not get into that clinical trial we would owed a fortune in medical bills. Like your son, we had a 1 year old and 3 year old when this started and now they are 5 and 7.

I'm not saying take this path or that one, but your son should get at least a couple of opinions from the best melanoma oncs available. We went to 3 and decided on what to do.

Good luck.

Rebecca

Hi Jeff's mom – welcome to the "I hate melanoma club".  So the interferon debate continues…and it will until we have something better.  

There are lots of people who have done interferon and have remained NED – and there are lots of people have gone with observation and have had the same response.   I did the same thing when my husband was diagnosed and asked the forums the same questions you are asking.  Unfortunately there is no easy way to decide because the studies have such mixed results.  

Just today I saw that the FDA approved a version of Peg-Interferon (Sylatron) for melanoma stage 3 based on one study.  http://www.dddmag.com/news-Sylatron-Approved-in-Melanoma-4111.aspx

This study (EORTC 18991) isnt very encouraging but the FDA approved it anyway: The drug extended relapse-free survival by about nine months compared with an observation-only arm (34.8 months versus 25.5 months), according to an FDA statement.  However, overall survival was not improved with peginterferon alfa-2b in the five-year trial, which had enrolled 1,256 patients.

As for Ipi, it is not available to Stage 3 unless you have unresectable tumors (in transit/sattelitte mets that cant be removed by surgery) – UNLESS you get into one of the adjuvant trials.  This one trial is Ipi vs placebo: http://clinicaltrials.gov/ct2/show/NCT00636168?term=ipilimumab+melanoma&recr=Open&rank=4

I am sure they are waiting for the results of this trial (in 2012) before they offer it up to all of the stage 3 NED like they do with interferon.  

As for biochemo – it is very hard treatment but I would chose that over Interferon (if we qualified for it and we dont, at stage 3a) as I know of multiple people with complete responses at stage 4. 

THE REALITY IS: WE NEED MORE OPTIONS FOR STAGE 3 NED!!!  IT IS BEYOND FRUSTRATING.

Emily (wife of Mike – stage 3a NED 19 months with observation)

http://www.emandmichael.com

Hi Jeff's mom – welcome to the "I hate melanoma club".  So the interferon debate continues…and it will until we have something better.  

There are lots of people who have done interferon and have remained NED – and there are lots of people have gone with observation and have had the same response.   I did the same thing when my husband was diagnosed and asked the forums the same questions you are asking.  Unfortunately there is no easy way to decide because the studies have such mixed results.  

Just today I saw that the FDA approved a version of Peg-Interferon (Sylatron) for melanoma stage 3 based on one study.  http://www.dddmag.com/news-Sylatron-Approved-in-Melanoma-4111.aspx

This study (EORTC 18991) isnt very encouraging but the FDA approved it anyway: The drug extended relapse-free survival by about nine months compared with an observation-only arm (34.8 months versus 25.5 months), according to an FDA statement.  However, overall survival was not improved with peginterferon alfa-2b in the five-year trial, which had enrolled 1,256 patients.

As for Ipi, it is not available to Stage 3 unless you have unresectable tumors (in transit/sattelitte mets that cant be removed by surgery) – UNLESS you get into one of the adjuvant trials.  This one trial is Ipi vs placebo: http://clinicaltrials.gov/ct2/show/NCT00636168?term=ipilimumab+melanoma&recr=Open&rank=4

I am sure they are waiting for the results of this trial (in 2012) before they offer it up to all of the stage 3 NED like they do with interferon.  

As for biochemo – it is very hard treatment but I would chose that over Interferon (if we qualified for it and we dont, at stage 3a) as I know of multiple people with complete responses at stage 4. 

THE REALITY IS: WE NEED MORE OPTIONS FOR STAGE 3 NED!!!  IT IS BEYOND FRUSTRATING.

Emily (wife of Mike – stage 3a NED 19 months with observation)

http://www.emandmichael.com

I'm stage IIIC as well, but the lymphnodes had extracapsular extensions that went deep into a muscle in my back so one doctor said I was more like stage IIIC and a half.  I wasn't comfortable with watching and waiting, my issue was that if this came back, which was VERY likely, I didn't want to wish I had done more and the interferon was that "more". 

Anyway, that was in 2001.  My surgery to remove the lymphnodes and muscle was actually on 9/11, that horrible day for everyone, and I've been free of melanoma since then – over 9 1/2 years.  I can never consider that it's behind me forever but I can say I've had a wonderful 9 1/2 years and the interferon, while no picnic, was certainly tolerable and "doable" and not the waste of a year that I often hear on this bulletin board.  I consider treatment decisions very personal and nobody can make them for you – all we can really do is share our own stories and you can take what you will from that.  I also think that everyone's goal should be to just keep going as long as we can in the hope that we finally get a better treatment that works for us so the fact that interferon can delay a recurrence is a GOOD thing. 

Good luck to you and your son.  I am so grateful this happened to me and not my children or grandchildren and my heart goes out to you.  Let us know what he decides.  There's no right or wrong with this, just what you can live with.

DebbieH, stage IIIC, NED 9 1/2+ years after interferon and no scans

I'm stage IIIC as well, but the lymphnodes had extracapsular extensions that went deep into a muscle in my back so one doctor said I was more like stage IIIC and a half.  I wasn't comfortable with watching and waiting, my issue was that if this came back, which was VERY likely, I didn't want to wish I had done more and the interferon was that "more". 

Anyway, that was in 2001.  My surgery to remove the lymphnodes and muscle was actually on 9/11, that horrible day for everyone, and I've been free of melanoma since then – over 9 1/2 years.  I can never consider that it's behind me forever but I can say I've had a wonderful 9 1/2 years and the interferon, while no picnic, was certainly tolerable and "doable" and not the waste of a year that I often hear on this bulletin board.  I consider treatment decisions very personal and nobody can make them for you – all we can really do is share our own stories and you can take what you will from that.  I also think that everyone's goal should be to just keep going as long as we can in the hope that we finally get a better treatment that works for us so the fact that interferon can delay a recurrence is a GOOD thing. 

Good luck to you and your son.  I am so grateful this happened to me and not my children or grandchildren and my heart goes out to you.  Let us know what he decides.  There's no right or wrong with this, just what you can live with.

DebbieH, stage IIIC, NED 9 1/2+ years after interferon and no scans

Memorial Sloan Kettering has a Stage III adjuvant ipilimumab trial.  It is 50/50 placebo but even if you get placebo you still have a great team of melanoma specialists monitoring and scanning you often.

-pat

Memorial Sloan Kettering has a Stage III adjuvant ipilimumab trial.  It is 50/50 placebo but even if you get placebo you still have a great team of melanoma specialists monitoring and scanning you often.

-pat

You don't say how old your son is, but I do want to mention that young people do better on interferon than us old farts.

Interferon IS a tough treatment, but as other have said, it's mostly 'doable' People are individuals, so of course, your son might have issues others haven't, but having good attention by the medical staff should help with that.

I did interferon in 03/04 when I advanced to stage 3B. I was ineligible for any trials, and so it was interferon or observation and I had no interest in observation only.

What kept me going during my days on interferon was BELLA! Bella's dad was on this board back then and would give us reports on his little sweetheart, who we all loved. She went through the entire year of interferon and she was 3 yrs old. I figured, if a 3 yr old could do it, so could I. And whenever my spirits flagged I thought of Bella.

I went 5 yrs clear of melanoma after interferon, and credit my long period of disease free life to interferon. When I did advance, it was with distant soft tissue tumors (to my leg), the last of which I had removed and sent down to California to be grown into a cell line and used in a vaccine. I was in that vaccine trial until December, when I got my last dose.

It's my hope now that I can maintain my NED status for long enough for a better treatment to become available.

There's a ton of interferon experience on this board. If your son should decide to go through with interferon, you'll be able to get a lot of info on the best ways to get through it.

I'm so sorry you are facing this. I've had this disease since 1983, and I cannot really even imagine how difficult it would be to see one of my children dealing with it.

Good Luck,

dian in spokane

You don't say how old your son is, but I do want to mention that young people do better on interferon than us old farts.

Interferon IS a tough treatment, but as other have said, it's mostly 'doable' People are individuals, so of course, your son might have issues others haven't, but having good attention by the medical staff should help with that.

I did interferon in 03/04 when I advanced to stage 3B. I was ineligible for any trials, and so it was interferon or observation and I had no interest in observation only.

What kept me going during my days on interferon was BELLA! Bella's dad was on this board back then and would give us reports on his little sweetheart, who we all loved. She went through the entire year of interferon and she was 3 yrs old. I figured, if a 3 yr old could do it, so could I. And whenever my spirits flagged I thought of Bella.

I went 5 yrs clear of melanoma after interferon, and credit my long period of disease free life to interferon. When I did advance, it was with distant soft tissue tumors (to my leg), the last of which I had removed and sent down to California to be grown into a cell line and used in a vaccine. I was in that vaccine trial until December, when I got my last dose.

It's my hope now that I can maintain my NED status for long enough for a better treatment to become available.

There's a ton of interferon experience on this board. If your son should decide to go through with interferon, you'll be able to get a lot of info on the best ways to get through it.

I'm so sorry you are facing this. I've had this disease since 1983, and I cannot really even imagine how difficult it would be to see one of my children dealing with it.

Good Luck,

dian in spokane

Your profile mentions that Leukine is a current treatment option. I feel
that it should be seriously considered, as it can change the nature of
melanoma in some people.

Here is a link to a previous post about Leukine and long-term survival:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ned-stage-iv-and-gm-csf-leukine

Hope this helps.

Frank

Your profile mentions that Leukine is a current treatment option. I feel
that it should be seriously considered, as it can change the nature of
melanoma in some people.

Here is a link to a previous post about Leukine and long-term survival:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ned-stage-iv-and-gm-csf-leukine

Hope this helps.

Frank

I feel your pain.  Was just diagnosed with 3c and the options seem so limited.  I am actually starting a vaccine trial, but my other option was resection then watch and wait.  I feel like surely there is something systemic that would help after surgery?  I am 32, mother or 3, very healthy.  I was originally stage 3b in 2007 and did one month high dose interferon and 8 months low dose.  I quite because of extreme fatigue.  I am so glad I did the treatment though, I really think it was the interferon that kept me relapse free for so long.  I know they are saying that first month is the most important.  I would do interferon again for sure if they would let me.  I wish I could get ipi now, I think that would be my first option.  Good luck with your decision!!

Ali

I feel your pain.  Was just diagnosed with 3c and the options seem so limited.  I am actually starting a vaccine trial, but my other option was resection then watch and wait.  I feel like surely there is something systemic that would help after surgery?  I am 32, mother or 3, very healthy.  I was originally stage 3b in 2007 and did one month high dose interferon and 8 months low dose.  I quite because of extreme fatigue.  I am so glad I did the treatment though, I really think it was the interferon that kept me relapse free for so long.  I know they are saying that first month is the most important.  I would do interferon again for sure if they would let me.  I wish I could get ipi now, I think that would be my first option.  Good luck with your decision!!

Ali

Hi Jeff's mom,

I think I posted a response to one of your earlier postings, I am a Biochemotherapy survivor, I was stage IV in November of 2006. My primary was on the surface of my eye and spread to my submandibular nodes and I also had a tumor on my lung.

Even though I fast forwarded from III to IV, Biochemo was the only choice given to me. I didn't think about getting any other opinions because when the doctor tells you that you have 6 to 9 months to live you just think, "let's get going on this A.S.A.P!

I spent 18 grueling months in and out of the hospital and I was getting Cisplatin, Carboplatin, Vinblastine, Temodar, Interferon and IL-2. In between hospital stays I self injected Leukine and IL-2.

I have the big CT scan in May and if I get through that unscathed, in November it will be 5 years NED for me. The treatment completely shrunk the tumor on my lung away!

I was told there is a 12% response rate to Biochemo, I am still here!

I can't even imagine having my child go through this, it is really great that you are reaching out to others for support. I couldn't agree with you more, melanoma sucks, I hate it, there have been so many others that I have met going through the battle. You are not alone. There is hope and I hope you find tons of info and have a treatment plan ready to go.

Hugs from California, please keep us updated on Jeff,

Suzanne

Hi Jeff's mom,

I think I posted a response to one of your earlier postings, I am a Biochemotherapy survivor, I was stage IV in November of 2006. My primary was on the surface of my eye and spread to my submandibular nodes and I also had a tumor on my lung.

Even though I fast forwarded from III to IV, Biochemo was the only choice given to me. I didn't think about getting any other opinions because when the doctor tells you that you have 6 to 9 months to live you just think, "let's get going on this A.S.A.P!

I spent 18 grueling months in and out of the hospital and I was getting Cisplatin, Carboplatin, Vinblastine, Temodar, Interferon and IL-2. In between hospital stays I self injected Leukine and IL-2.

I have the big CT scan in May and if I get through that unscathed, in November it will be 5 years NED for me. The treatment completely shrunk the tumor on my lung away!

I was told there is a 12% response rate to Biochemo, I am still here!

I can't even imagine having my child go through this, it is really great that you are reaching out to others for support. I couldn't agree with you more, melanoma sucks, I hate it, there have been so many others that I have met going through the battle. You are not alone. There is hope and I hope you find tons of info and have a treatment plan ready to go.

Hugs from California, please keep us updated on Jeff,

Suzanne