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October 23, 2013 at 8:29 pm #21638
I am new to this Forum but I am interested in what you all might have to say. I am a 65 year old otherwise healthy male. I was diagnosed in July with Stage 3-A melanoma that started in my foot. It spread to one lymph node in my groin which was found during a sentinal lymph node biopsy and I have had the lymph nodes removed from my groin. None were positive. As I recover, I am being guided to, what sounds like the only drug choice, which is interferon. No other trials which do not have a placebo are available to me. I have a Mitotic index less than 1/mm2. There was no ulceration and I have a Clark’s level of IV. My question is other than doing nothing is there anything else I can look at besides Interferon?October 24, 2013 at 10:13 am #62811ThandsterParticipant Sorry you had to join us. What was the Breslow thickness of your primary? Was it tested for the BRAF or KIT mutations?
ThandsterOctober 24, 2013 at 11:38 am #62812LinnyParticipant
Sorry to have to meet you here.
I don’t know what any of the numbers mean, but a number of folks do quite well with the “do nothing” option. What that encompasses is frequent doctor visits and scans that will lessen in frequency over time.
Your doctor may have told you that you do not have advanced melanoma and that’s a very positive thing to keep in the back of your mind.
Your immediate concern would be to keep an eye out for swelling in the leg on the side of the body from where the lymph nodes were removed. The swelling is a condition called lymphedema. It’s a manageable condition but you need to seek out a physical therapist who specializes in it and will teach you how to manage it and measure you for a compression garment for your leg should you need one.October 24, 2013 at 1:15 pm #62813
Thank you very much for the responses. The additional numbers are Braf positive and Breslow measurement approx. 1.2 mm thickness. Any additional thoughts about Interferon or not? Also, I am in a leg compression garment right now and have a final appointment with my physical therapist today to make certain everything is working well.October 24, 2013 at 1:37 pm #62814Catherine PooleKeymaster Don,
Welcome to our forum. Interferon is an old drug, known for toxicity and little advantage. Doctors do not prescribe this at the leading melanoma centers, i.e. Sloan Kettering and MAYO clinic, Hopkins, Penn etc. Your melanoma was caught fairly early, had low mitotic figure and is in a great location for good prognosis. The SLNB took care of the few cells that got away in most cases and this
was an aggressive approach. We consider watch and waiting with vigilance to be aggressive too and NOT a do nothing approach. There are no guarantees with this disease or with life, but the choices are not good for stage III therapy. Hopefully that will change soon. Your age and any history/even family history of depression would be other reasons to opt out of interferon. I hope this helps you and I would be happy to discuss on our helpline as well or by email. ( email@example.com toll free)
Try to live in the moment and enjoy!October 25, 2013 at 2:55 pm #62815charissa1969Participant
I am so sorry you are having to go through this. I completely understand how overwhelming the decisions can be. I was diagnosed in July of this year and am currently at stage 3a as well after a WLE, SNB, and a groin dissection. I was offered a combination of DTIC and IL-2 through the Brown Cancer Center in Louisville, KY. It had shown some promise to reduce the risk of recurrence but I don’t think they have shown that it affects overall survival. I decided to decline and to maintain regular derm appts. and scans. I agree with Catherine that this is not a “do nothing” approach; it was the best decision for me and my family, and as I continue to heal and get back to my “normal” life, I am still confident in my decision. I did not consider interferon at all; I had read on this forum and other blogs about its toxicity and mixed results. When you have a chance, let us know how you are doing and what you decide.
Blessings, CharissaOctober 25, 2013 at 4:42 pm #62816
Thank you for your response. This forum has been so helpful to me in that I am now not alone! I appreciate the feedback on Interferon from everyone. I have all but reached the decision to do exactly what you have decided to do. I have a weekend planned with friends that will not include much cancer talk and I am looking forward to that. After the weekend I will contact my doctor and advise him of my decision. As you and Catherine have said, staying on top of all the check ups and watching my body is a positive and proactive plan.
I certainly hope and pray that your plan reaches the desired result as does mine.
Blessings to you!
DonJNovember 17, 2013 at 5:08 am #62817XCguyParticipant
I saw your post after making one myself and wanted to chime in. I was 3a myself and declined the interferon. I had it in one sentinel node and then had a complete axial lymphadenectomy, which didn’t turn up any more positve nodes. At the time, there were no clinical trials anywhere near where I live, and most had some requirement or another that I didn’t meet. So by default I took the so-called “watch and wait” route.
I think your decision to not do the interferon is a good one. I looked into it extensively and just couldn’t find much upside to it. Besides all the accounts of interferon pretty much throwing you into a deep, dark hole of fatigue and depression, there were so many stories of people who had their immune systems completely messed up from it — even years after the treatment — that I had to say “no thanks.” I’m a little over 3 years out now, and still NED.
I wish you all the best.December 27, 2013 at 9:17 pm #62818goldfidlerParticipant
I am just adding my comments in here for Don, given the foot location. My apologies for the delay in response as the last 6 weeks of my life have been hectic, as we moved from PA to FL.
I am a 43-year old male, married with one child, and in otherwise great physical health. I have never had any fatigue, illness, or other NED. However, for several years, I have had a chronic wound on my foot. In June, I was finally properly-diagnosed with melanoma in my right foot. Due to the extended duration of the foot issue, I required a Trans-Metatarsal Amputation on my right foot and an SNB on my right thigh. The SNB produced three positive nodes of the five removed. A further LND on my right thigh came back negative in all 8 additional nodes removed.
After extensive healing and physical therapy, I was offered several clinical trials, but all included Interferon to some extent. One was straight interferon, another was a blind study of different doses of interferon, and the third option was a double-blind with interferon or IPI. Most of these solutions have not yielded much positive survival benefits for Stage III. For most of reasons listed above, I have decided to watch and monitor with regular scans and doctor visits. I am exercising, monitoring my diet, and taking a variety of vitamins and supplements.
There is a lot of first-hand experience and wisdom on this site. Sorry to meet you here but we are all happy to share what we can.
Our thoughts are with you…
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