Need Treatment Advice Pronto

Posted By
4/12/2011 7:38pm
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Replies: 5

I'm Stage 3c and about to decide on treatment. I'm currently NED after WLE and lymph node dissection.  I'm considering 1 month of HD Interferon or a clinical trial of ipi versus placebo. I know the clinical trial is a gamble, but there seems to be more success with ipi (if Iget it) than Interferon.  I know alot of people have had success with Interferon staying away for awhile, so I'm really torn.   My oncologist doesn't seem to have any answers for me. Everytime I suggest something, he seems to not be thrilled with the limited success of certain drugs.  Keep in mind he's a melanoma scientist, so he's all about the science and doesn't see Interferon as a good option for me. Apparently in Canada, we don't do Interluken or Biochem anymore, so what choice do I have at this point?   He does like ipi and said I should do the trial, but with Interferon, I know I'm getting something.

I feel I would drop out of the trial if I didn't get an autoimmune response even though I know it's not fair for the trial. I had a deep primary, so I feel I need to do whatever I can to keep this from coming back as long as I can.  What is the cutoff to do Interferon after surgery?

Currently, I'm taking a holistic approach and trying to make my immune system as strong as I can.  It may not help, but building a stronger body can't hurt. 

Any advice, experience with trials, etc would be greatly appreciated. 

Thanks,

Lisa

Many impossible things have been accomplished for those who refuse to quit

Sharyn - (4/12/2011 - 8:29pm)

Hi Lisa,

I just responded to you on MNC. But I just wanted to tell you that, to the best of my knowledge, IL-2 is available in Canada, as it was offered to me before I signed on with the ipi trial. Email me  if you like.

Hugs

Sharyn, Stage IV

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.

Sharyn, I could be wrong, (please correct me if I am) but from what I have gathered, many doctors in Canada do not favor the use of IL-2, and IL-2 is only available through one hospital in Canada-Montreal Jewish General Hospital for kidney cancer or melanoma. If memory serves, you are or have been seen by them.

I also believe Lisa can appeal if denied.

Would she be able to use it for stage III though?

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

Interferon is approved for use within 56 days (8 weeks) after surgery in the U.S. I believe that is the same for Canada as well.

Good luck with whatever you decide to do.

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

Terra - (4/12/2011 - 9:13pm)

Hi Lisa,

 

Some oncs do not seem to be in favour of IL-2 in Canada; however, we do have access to it, the health care system will pay for your treatment and you can receive in Buffalo NY - I just do not know whether it is availabel to stage 3 patients or just stage 4 patients.  Your on c can look into it for you and if you decide he will have to apply to the gov to ensure they will pay - our onc did it for Derek, he was accpeted (as I am sure you would be) and when and if he decides to do it it is there.  The whole process took about a week or less.

I have had a look at your profile, and it reminds me of what happened with
my late wife. She also had a very deep primary, and was diagnosed
in February 2007. Unfortunately, the new drugs that are around
today weren't available at the time. We considered interferon, but rejected
it after doing a lot of reading and talking to a number of people about
their experiences and opinions.

I feel that these are some of the most promising options (depending on
eligibility criteria):
Yervoy (ipilimumab)
BRAF and MEK inhibitors
GM-CSF (Leukine)
OncoVex
Adoptive cell therapy

As I might have mentioned before, it seems that one will need a combination
of treatments from the above list combined with surgery and/or radiotherapy
to keep things under control.

I think that it is good that you are taking a "holistic approach and trying
to make my immune system as strong as I can". We also tried that same
approach, but it did not help much because unfortunately melanoma is such a
devious cancer.

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).