What info have you found?

I'll be honest, I'm not the brightest bulb in the box. I started my extensive research AFTER I went through a year of Interferon. Looks like I should have waited for a different treatment because as far as I can tell, Interferon is the treatment for melanoma with the worst side effects and only give you a 15% chance of clearing the cancer and 5% complete remission. Those are very low numbers and not very encouraging at all. I feel like I wasted the last year of my life doing this treatment when I could have been out having fun and living life with a million times more energy.

I found another forum that is specific to melanoma. I've found many interesting reads there. It is http://forum.melanomaintl.org/toastforums/toast.asp (I think thats the right link -- let me know if its not)

Anyway, as far as I can tell, drinking green tea, eating healthy, exercise and getting enough sleep seem to be just as good (if not better) treatment for melanoma. I guess the combination of all of the above AND interferon couldn't hurt... I dont know.

Thoughts?

Comments

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  • Yeah, my dad really likes researching and I really just wanted to stick my head in the sand when I was diagnosed so he researched everything and then he and the doctors gave me the short and sweet version... I chose not to take the interferon and have drastically changed my diet so I mostly just eat produce, whole grains, and nuts- with a little poultry and fish sometimes. I'm just now gradually starting to take more interest, but I find the lack of effective treatments for melanoma depressing mostly so I don't read about it too often. As far as interferon goes I saw one doctor down in San Francisco that encouraged using it for younger patients because it might let prolong the time until reccurrence long enough for something better to come out, but my doctors in Seattle were more of the opinion that doctors just give it because there was nothing else- I actually chose not to do the month trial of interferon because I didn't want the further surgery to take my lymph nodes out and risk getting lymphedema, otherwise I probably would have done the intereferon just in case it might help!
  • I had 37 lymphnodes removed before the surgery...Think they will have to take more? God I hope not!! My armpit feels like a huge hole in my body now, I can't imagine they left anything in there lol.

    Off to google lymphedema...
  • Well they only took one node out of my armpit and one from my neck (they couldn't find the one at the third drainage site), so further surgery for me would have been removing the rest of the lymph nodes in my armpit where they found a little cancer... but my doctor told me I would have a 20% chance of lymphedema (which sounds like the amount swelling can vary a lot) if they did that, and that in my case there was about a 15% chance of finding more cancer cells there, and there's not really evidence yet (they are doing a study) showing that it helps having the lymph nodes removed earlier rather than later if problems show up. And with three drainage sites I could have little microscopic cancer cells elsewhere in which case taking out all the lymph nodes in my armpit wouldn't help. I think with this stuff it's really a case by case basis, and depends on personal preferences. Sounds like they've already taken yours out though! Isn't this stuff just so much fun?
  • Firstly, really wierd to join the forum and realize that the most interesting posts have been written almost a year ago. So, I guess my reply won`t even be read, but anyways, I want to share. So, as far as I know, such treatment as virotherapy is becoming more and more popular in Europe as it is believed to be significantly effective against melanoma. I haven`t studied it that much, but here`s the article I found: http://bit.ly/yjnbuw
    At least we know that there are other options not only chemo/radio!
    CarrieB
  • As it so happens I'm still around though :) The virotherapy treatment is interesting, and there is immunotherapy treatment for melanoma as well now so there are definitely options other than the chemo/radiation that isn't really effective... I'm just hoping I won't have to test them out!
  • Nice to hear from you as I thought no one will even bother to look at such old post! :)
    I guess our opinions differ, as I have a close friend who suffers from melanoma and is currently practising combination of chemo and virotherapy (in between the chemo rounds). His oncologist said that such combination is more effective than chemo alone regarding patient`s overall life-quality and improvement of immune-system. Of course, I cannot claim that it is effective for every patient, but I am blessed that it works at least for my friend! :)
    Thanks for responding,
    Carrie
  • I'm probably in a very different situation than your friend though- chemo would not even be offered by my doctors until stage 4 and I am only stage 3. Believe me if I was stage 4 and had metastatic melanoma I'd be taking chemo combined with whatever else my doctors could come up with! Sounds like your friend's oncologist has him on a good plan, and I wish him the best.

    So no real difference of opinion I think, I just wanted to point out a few recent options in addition to the virotherapy you mentioned- you really have to consult with a doctor to figure out the right one/combination. A couple of drugs for melanoma recently approved by the FDA I've read about are Yervoy which I guess gets the immune system to fight tumors and vemurafenib that only works for patients with a certain gene mutation.
  • I guess you`re right, you and my friend just are in two different positions so the treatment differs. What is your treatment plan?
    I believe that the location changes things too, as United States have a different vision on how the cancer patients should be treated. Various European countries practice less toxic drugs than US in order to maintain the quality of life over the quantity. Moreover, FDA has different restrictions than EU, therefore treatment options differ significantly.
    But its nice to hear that there are developments in this field and I hope that soon enough cancer patients will have similar rights in terms of treatment options. ;)
  • Currently I'm just on a "wait and watch" plan- I had the option of more surgery and/or interferon but elected to stay healthy and live life for now and if the cancer shows up again then I'll deal with it. Right now I get check-ups with my dermatologist and oncologist every six months- I get ultra sounds of my armpit where the cancer was found in one of my lymph nodes, blood tests, biopsies of any suspicious moles, and just generally poked and prodded. I'm all for less toxic drugs... or in my case no drugs ;)
  • I have always wondered how it feels to 'wait and watch' something so serious as cancer? Are you nervous all the time or do you see it all very rationally? I can imagine how much you appreciate everything you have already and all you experience. I think it`s a kinda 'benefit' from being a cancer patient - cuz so many teenagers complain about everything and wonder why they are not as rich and famous as all the celebrities, while cancer patients know what to enjoy - life!
    Its so nice to see that a younger generation breaks the assumptions of believing that chemo is the only successful method of cancer treatment, young people always want to explore everything :)
  • I am a pretty rational person- the way I see my situation is I can have further surgery and take drugs in some clinical trial that may or may not help my chances at all or I can just try and stay healthy and enjoy my life free of side effects. Worrying about what might or might not happen rationally seems like a waste of time since it's mostly out of my control, so I just hope that it doesn't come back and do my best to get on with my life in the mean time. The saying "live like you're going to die tomorrow" seems wrong to me now- I want to live like I'm going to live a long and healthy life!
  • thanks for the inside scoop! I think you have a wonderful perspective of life and I wish you to continue it! :)
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