Should I do interferon for my melanoma??

blamb320 · New User Joined: 15 Aug 2009 Posts: 1

To bring you up to speed.. I am a 28 yr old male, general contractor, self employed. I was diagnosed approximately 8 weeks ago... I wasted no time, melanoma was on my forehead. Had the wide incision and SNB. unfortunately the Synt. node showed presence of melanoma. Approximately 9 days ago I had a complete left side neck disectomy. Pathology revealed one more node... totally TWO nodes in my neck that contained the melanoma.

My dr's at UNC tell me i am in sort of a grey area and its my decision as to whether take the 12 month course of interferon... I have read some things that say its better to wait and use interferon upon a reoccurance than at this point....

I am just looking for some feedbacks/perspectives/opinions/suggestions. Anything is more than I currently know about it. I appreciate any replies. May God bless any of you who are going through this or have a loved one going through it currently... but remember to keep your head up and tell youself you are NOT a statistic Smile

Keep going!!!!

LucyM · Experienced user Joined: 06 Jul 2009 Posts: 51

Hi there,

I'm not a sufferer - my best friend is therefore I've been googling for about 8 weeks for her Smile

Read a LOT of stuff, many blogs, much research and the current thinking among a lot of people is NOT to do interferon - though it's licensed and has been shown to 'hold off' the recurrence of melanoma, it doesn't prevent it coming back as soon as you stop - plus the treatment can make you feel really bad, so you kind of gain a year maybe but you are feeling bad for that year, if that makes sense.

Some people don't have terrible side effects - but it does carry a high toxic load for your system, so likely to be some at least.

Have you been asked to consider a vaccine or clinical trial? There are many many trials going on all the time, for such things as Ipilimumab, Avast-M, several vaccines...it is sometimes worth getting onto one of those.

I wish you much luck. My friend just had the CLND as well, there were positive nodes found - she's looking to take part in a trial.

This is all stuff I have been reading - I'm not a medical person, so please do take others' advice.

Take care x

kctay · Regular Joined: 26 Sep 2008 Posts: 18

Hey,

I voted yes, with a qualification. Are you healthy, both physically and mentally?

I just completed my 9th month of Interferon and will be done November 15th. I call this treatment "the lost year". I have lost about 30 pounds, have many of the side effects. I do question myself daily as to why I opted for this route. But your options are limited. Even though this year long treatment cures nothing, it does give you more time. Time for other developing treatments, or trials to be developed. My Interferon dose is 25 MIU three days a week.

It is also said that men handle the treatment better than women. I don't find that to be the case. You could read about it forever because so many folks have many different reactions to the treatment. For example, in the last month, I have developed like a feeling of arthritis in my arms, hands and shoulders, so bad I have trouble sleeping. They say there is nothing they can do for it. I have dozens of other side effects.

My choices at the time of this treatment were; watch and wait, or interferon, or Hypothermic limb perfusion. btw, if you opt for this and want someone to talk to about ALL the side effects, feel free to IM or email me.

I don't regret the Interferon, I"m only 51, and am able to handle it. In my case I believe I would have had more psychological problems had I not done the interferon. I would always be questioning myself. I did not want to "watch and wait".

Hope this helps

Casey

LucyM · Experienced user Joined: 06 Jul 2009 Posts: 51

Just been reading a post by Haoleboy, about ulcerated mel responding better to interferon...if yours was ulcerated it might be worth a shot despite what I said earlier.

LucyM · Experienced user Joined: 06 Jul 2009 Posts: 51

All due respect to you, Casey, hope that is taken as read Smile

I'm very much an outsider, apologies if I come across as insensitive.

kctay · Regular Joined: 26 Sep 2008 Posts: 18

Lucy, Lucy, Lucy, just don't pick up that football when I'm trying to kick it! LOL

I took no offence to what you said, no worries, I just thought I should chip in what my thoughts were since I"m in the process of being poisoned at the moment. I was really looking for good info like this last November when I began my treatment. It was relatively easy for me since my Melanoma is In Transit Metastatic Melanoma.

It's rare that Interferon would kill you via the treatment, but Melanoma will.

Casey

HaoleBoy · Senior User Joined: 19 Aug 2008 Posts: 108

Blamb, if your primary tumor was ulcerated, you may want to seriously consider taking Interferon... and I recommend that you read one of my earlier posts that Lucy referenced .... However, please note that I'm pretty sure the European Study (Italian if memory serves) was based on a different dosage amount in both the Induction Phase (1 month) and Maintenance Phase (11 months) than the Interferon protocol in the U.S. ........

One thing to consider is that if - God forbid -- you have a recurrence, some trials require some other adjuvant therapy first before allowing your participation (I want to say the Phase III GM-CSF trial does but don't quote me on this)....Other trials don't.

Also, there are some studies which conclude that the 30 Day Interferon therapy is almost as good as the entire 1 year course in delaying recurrence....

Recommend that you consider visiting the Melanoma Patient Information Page -- there are alot of people on that forum who have advanced stage melanoma (Stage III and IV) and there many pro and con debates among these patients about the treatment... Some recurred while on it and others were/are Stage IIIB and IIIC and are still alive today "No Evidence of Disease" (NED) 8 and 9 years later.....

http://www.mpip.org/bb/bbindex.html

Casey, it's great to hear from you -- I often wondered how were doing... I sent you an email back in the Fall, when I heard that you were going to do the Interferon, about an Italian Study which concluded that people who took Interferon and the supplement CoQ10 had a better outcome than those who took Interferon alone ....

For others reading this, CoQ10 is an enzyme which our body makes naturally but the level of it in our body begins to decline after age 50 in most people.

Haole Boy (aka Hawaii Bob on other Mel fora)
Stage IIA

LucyM · Experienced user Joined: 06 Jul 2009 Posts: 51

Casey you are a gracious fellow. I appreciate it and am bowing to your attitude, in general...may it do you the world of good, I guess my 'knowledge' is severely limited thus far.

Thankyou Haoleboy for showing up on the thread and filling us in, too.
Wishing you all well

Lucy

CaitlinMarie · New User Joined: 13 Sep 2009 Posts: 2 Location: California

Hi, I myself have never been on interferon. However my mom some years ago was diagnosed with Hepititus C, obviously not cancer, but she did decide to treat it with Interferon and she has been in remission from Hep C for about 6 years now. Now while its a different disease entirely, many Doctors to this day insist that Hep C will never go away and demand she do blood tests every month and still - it has seemed to vanish from her system. So personally I feel like Interferon saved her life, now how it will work for Melanoma - i'm not sure. Its worth a try.

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