interferon 30 days iv vs. 30 days iv +11 months injections

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10/10/2010 9:48pm
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Replies: 20

I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

There was a study that said that the 11 months didn't show any more promise than just doing the high dose month. I recently asked my melanoma specialist and he said that study has been proven not to be accurate.  Different Doctors seem to have different opinions.

Whatever you decide on just don't look backwards.

How are your side effects?

 Hi,

My husband was diagnosed stage 2c.  It hasn't spread to his lymph nodes and his pet scan was clear, but he is still going to do the month of high does, and then 11 months of low dose interferon because his were so deep, 2.4mm and 5mm.  He is scheduled to start in November.  We are still learning about all this stuff, so I can't say the affects of 1 month vs. 12 months, but just wanted to let you know what we are doing. 

Akilyn

I did the one month high dose interferon in January of 2009.  It was a choice made by myself after finding the study done in Greece stating that there was not a difference in over all survival. My doctor felt that that particular study was questionable in her eyes.  She advocated for the 12 month regiment.   My family and I were in the middle of dealing with my cancer and moving to Switzerlandand teenagers...  It was not feasible for me to be sick for 11 months if there was no benefit.  I am stage IV now but who knows the answer as to the what if's.  I do not regret that decision.

Peace be with you,

Shelly

This is such a personal decision.  I'll just share our experience.  My husband just finished (last Friday) his last day of the 4 week high dose interferon.  His melanoma specialist as well as the oncologist at the treating facility both said that the research shows very little (if any) increased benefit with the additional 11 months and are not pushing it.

If my husband had done ok with the high dose he might have considered the self injections, but he's had a tough time.  Because of that plus his medical teams input, he has decided not to do it.  

Wishing you the best!  Keep us posted on what you decide and how you are doing.

Tracy

wife to Bill, stage IIIc

My onc. still recommends the 12 months.  That is what I decided to do.  I told myself if it got too bad I'd quit.  I made it the whole year.  I started March of 09 and ended March 10.  It was tough and I honestly don't remember some of it, but I'm glad I did it.  At least I won't have to say what if , if it does come back.  Good luck with your treatment.

 

Amy S. in Michigan

Stage IIIA 5 years NED Completed 1 year interferon 2009.  God is Good.

 

Hello 

Some have mentioned the study the docs dont like - the Greek study that compared 1 year vs 1 month and found there to be no difference.  The study used lower amounts of the standard interferon dose they usually give in the US - that is one reason the docs don't like the study.  The results of the ECOG 1697 will supposedly answer the 1 month versus 1 year question but I am not sure when that will happen.

In the meantime, we are all forced to make the decision to do or not do interferon.   It is so maddening that there are virtually no clinical trial options for 3a outside of interferon.  There is the one Ipi vs placebo trial for Stage IIIA with metastasis > 1mm but it is blind and you might not get the medicine.

Anyway - best of luck to you!

Emily

wife of Mike stage 3a - 14 mos NED with observation

www.emandmichael.com

Our experience with melanoma: http://emandmichael.wordpress.com/

Wow, if you have the energy to be online that is awesome! You are doing great!

I did 1 month of interferon in March 2010. And with kids it was brutal. I talked to 2 specialists in 2 diff settings...Angeles Clinic and UCI.  They both said 1 month. One suggested GMC-SF for the rest of the year but neither thought that the full year with 4 young kids would give me the benefit over the life with my kids. My decision was made by looking at the poss. benefits and comparing to the cost of my family.  I can honestly say it was the right decision for my circumstances. the 1 month was so hard on my children, I cringe to think of the effect on them with a year of interferon.

You can make this decision! You will do the right thing for your package, because we all have a different package, different plan, different circumstance to conquer.

I wish you the best in your month of intensive...I barely remember much of mine! LOL

Wow, if you have the energy to be online that is awesome! You are doing great!

I did 1 month of interferon in March 2010. And with kids it was brutal. I talked to 2 specialists in 2 diff settings...Angeles Clinic and UCI.  They both said 1 month. One suggested GMC-SF for the rest of the year but neither thought that the full year with 4 young kids would give me the benefit over the life with my kids. My decision was made by looking at the poss. benefits and comparing to the cost of my family.  I can honestly say it was the right decision for my circumstances. the 1 month was so hard on my children, I cringe to think of the effect on them with a year of interferon.

You can make this decision! You will do the right thing for your package, because we all have a different package, different plan, different circumstance to conquer.

I wish you the best in your month of intensive...I barely remember much of mine! LOL

Hi , I am currently in my first week of injections after doing the four week high dosage. I still have bad side affects on the injections however I am told these can subside. I too will see how long I can take it because I have a 3 year old daughter and husband who works shift work. I have been asking about whether there is any evidence to suggest doing the 48 weeks is any more beneficial than just having the 4 weeks high dosage. It is still very hard and I am also suffering depression as a side affect. It is warming to hear that people have made their own decision about what is right and works for them and their family. I have suffered terribly with interferon side affects.

Josiah, our 14 year old, is going to do the full year, unless he is medically unable to. Why not try it and see how it goes? One study from Greece sounds questionable. Of course, Interferon itself is questionable, as far as results, but we plan to do everything we can!! 

Josiah is finishing his first week of high-dose. The first two nights were horrible and then his Onc adjusted some meds and now he has NO side effects! We are sooooo happy! 

Hi,

I won't reiterate everything that's been previously said, except to say that the jury on INF is still out. Some doctors don't even offer it anymore, others swear by it. This only makes our decision as mel patients even harder. I'm sending you the links to 3 very informative sites: 2 that offer both sides of the argument, and the abstract from the 2007 Greek study that's been referred to in other responses. Have a look at them (it would make more sense to read them in order), and hopefully that will help you make your decision. Personally, I didn't do INF at all. Although I am now Stage IV, I don't regret that decision. I have an unknown primary, and my first biopsy came back metastatic and was over 8.0mm deep (Stage IIIB). I think I was destined for Stage IV, with or without INF, so why suffer for nothing? And despite all I've been  through, I still feel great 5 years later.

Hugs

Sharyn, Stage IV

http://theoncologist.alphamedpress.org/cgi/content/full/10/9/739 

http://theoncologist.alphamedpress.org/cgi/content/full/11/5/538 

http://meeting.ascopubs.org/cgi/content/abstract/25/18_suppl/8505 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

I just finished my full year of Interferon in October.  Origianally, my oncologist was fully behind that study from Greece.  He told me  to do just the month of high-dose.  My side effects were tolerable, and I continued to work.  Then he said, well just try the injections.  I did...not fun...not horrible...but tolerable, so I stayed the course for the full 11 months.  When I finished the year, he said it was a good thing because the study proved to be questionable.  Now, I'm glad I stayed the course.  By the way, I am 46, stage 3B- 3 nodes were positive in groin area.

One thing I've learned on my melanoma journey is that YOU have to be your own advocate.  YOU have to do the research about the treatments.  YOU have to make the decisions about which way to go...and never look back!  You cannot rely on these doctors to do the best thing for you.  When I was first diagnosed (July 2009), I went to 5 specialists.  Each had trials; each promoted their trials as the best; each put down the other doctors' trials that were offered to me.  I went home from each appointment in complete despair.  You see, at each of those doctor's offices, I was just another patient; just a possible # in a trial.  The doctors have an "end justifies the means" outlook.  He/she may lose some patients along the way, but it's worth it and necessary to be "the one" to find a cure. 

But when I went home, I was someone's mother, someone's wife, someone's sister, someone's daughter, someone's teacher,  and someone's friend.  That's when I realized that I had to make my own decisions with my family.  Remember, 'home is where the heart is."  That's where people are really looking out for YOU.  So even without medical degrees, we the patients can learn all about this disease in order to make the decision that is right for our personal circumstances.

Sorry this is so long, but I just wanted you to know that whatever decision you make is the right one for you.  This board has been a lifesaver during my journey.  I have learned so much here from patients and caretakers going through the journey.  I feel ready to face anything that comes my way...and I won't be alone...as long as I have the MRF board members holding my hand!

I'm sending prayers your way...to have the strength to make the decisions you need to make now...and with God's help,  never needing to make any decisions regarding melanoma ever again!

Good luck!

Tricia

Very well said, Tricia!

Since this post was originally written in October, I guess she must have made her decision by now. I wonder what it was ....

Hi All,

 

I have still not made my decision regarding the injections. Tomorrow is day one of week two. It is a very hard decision to make. However for the time being I am going to ask my oncologist and see what his opinion is - I live in the country and my Oncologist has to do every thing over the phone through the chemo nurse. I am suffering but I don't know if the suffering is bearable tolerable or not - my head is so unclear (because of the interferon) I can't think straight. Anyway I really appreciate peoples stories as it gives me an idea how things are travelling. Thank you.

Our 14 year old son starts week #2 tomorrow of high dose. His Oncologist has adjusted his meds and he had NO side effects the last three times last week, other than tiredness. The first two nights were horrible. I know everyone reacts differently, but this is the magic combo for him:

Visiting nurse arrives and gives him a bag of saline over an hour. He gets two Tylenol by mouth, anti-nausea via pic line AND Demerol through line. This is what we think is making it so much better. Interferon is next, over 30 minutes. We then give him Advil two hours after Tylenol dose, Tylenol two hours after that and then usually either Advil or Tylenol before bed. I'm telling you - it is like magic! No fever, rigors, aches and pains any longer. Demerol is our friend!! 

I am so happy that your son is having success now with the Interferon.  I found that the first few nights were rough, but then I got used to "the feeling" of Interferon.  I took my shots right before bed with Benadryl and 2 Tylenol.  That helped me sleep through any side effects.  I wish your son all the luck in the world with the Interferon.  He'll do great on it!  I know of another boy who was very athletic, diagnosed Stage 3.  That was five years ago!  All clear ever since!!!!!  They say Interferon works for 8-10% of patients...some patients have to be in that group...why not your son!

I'm sending prayers your family's way!

Tricia

Tricia - I loved your posting about being a # to the doctors.  So very true.  My mother was diagnosed with Stage IIIB melanoma in May from a scalp primary.  Turned out, she had been going to her derm for a year while he was taking off a number of basal cell and she had mentioned this scalp mole to him several times - he said it was nothing.  It started hurting and itching and he injected it with steroids.  3 months later, after it grew he biopsied it, and it was mela and had already spread to 1-2 lymph nodes in her neck.  She had her SNB in Atlanta, and initial removal, then the doc wanted to take more.  He said NO WAY to interferon and made us feel like we were insane for even asking about it.  Yet, some websites say it is the standard of care for stage III.     She wanted a second opinion at MD Anderson, but MD wanted a referral from her doctor.  He wouldn't give the referral.  So, we went to our PCP and he gave the referral and she went out there.    Mom transferred her treatment to MD Anderson - so she has been treated out there since June.  She had more of the area around the primary removed, the lymph nodes from the entire side where there was a positive, and she did the month of high dose in August.  It was very hard on her, but she made it through.  She started the injections in September.  I was thinking "well - if she made it through the high dose, the injections should be a piece of cake."  Wrong-o.   The injections stripped my mother of every bit of her quality of life.  She got to where she had so much fatigue, she couldn't walk.  Food no longer tasted at all good to her.  She pretty much could only eat fruit.   She went off all vitamins - and because she wasn't working, she had muscle atrophy.  In 3 months lost 15 lbs (and she was a regular size person, not heavy.)  She started having tremors - even "brain fog" to the point where she couldn't put sentences together, couldn't carry on a conversation.  Couldn't remember anything, could barely smile.  It was as if we were watching alzheimers come on in fast forward.   They reduced her dosage and gave her ritalin for energy - it didn't work, only served to increase her tremors to the point that she could no longer hold a fork or feed herself.  My dad had to bathe her, help her go to the bathroom.  She had a mini stroke over Thanksgiving - stayed on it a month longer, until the MD docs reviewed her stroke medical records and said no more.  She made it on interferon injections 4 months.  She is out at MD now, and today her derm said no more interferon - just "watch and wait."  I am not crazy about this AT ALL - but it is her life, and I don't know how much I can or even should impress my opinion here.  She is 70 - so they are very concerned about quality of life.  My sisters were very concerned that the very medicine that was supposed to help her was killing her --- and it was --- but then, I am also VERY scared of her being on nothing to fight this beast.  We are left to prayer, and quarterly follow ups at MD.

Before she made this decision, we were offered several cliniical trials for different medicines.  I think the ones that concerned me the most were the ones that were put on by the drug companies.  I just felt that we were being "recruited" as a guinea pig for new things, and there is no guarantee that Mom would've gotten the medicine.  That was a deal breaker.  In a medical trial for a new med, do you think they would give the 70 year old woman the medicine or the placebo?   We just weren't convinced it was 100% "blind" - there are too many people age 20, 30, 40 who are suffering from this disease.  I can say that the folks at MD Anderson did not push whatsoever.  They mentioned options, but at the end of the day they did not push like the Atlanta doctor did.  I wondered if he received some type of $$ for having people join the study.

I have heard nothing but fantastic things about MD Anderson, and I can say nothing but wonderful things about the doctors and the care offered there.  I spent a week there with my mom when she had her surgery, and I was floored.  I am just putting my total trust in their advice and opinion.  My parents are as well.

So - that is our interferon story.  Like I said, this decision was made today, so we are hoping and praying that we will be one of the happy endings.

All the best to you all as you go on your journey -

worried Daughter in Atlanta

Thanks, Tricia! Our son transitioned to shots this past Monday and they appear to give him NO side effects at all! He went running after the first dose and he romped in the snow all day after the second dose. I almost feel like it can't be working if he doesn't have side effects, but I know this isn't true. We do give him Tylenol and then Advil two hours later. He is definitely more tired and goes to bed earlier than his normal midnight (teenagers!), but other than that, things are SO good!

Sorry, about the delay in responding.  I forgot my password to get on here, and honestly I forgot I made this post.  I elected to do the 30 days of interferon.  It is almost March and I feel pretty good.  I had clean scans in January.  My March scans will be clean too.  I just know it.  :)  Thanks for your input. 

You must do what your brain and heart tell you.

I can not  tell you which one is best.

I will tell you that I did interferon from 1997-1998 and yes I had a recurence, and many more, but today I am alive..

Only you can decide.

 

Charlie S