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August 12, 2012 at 5:18 pm #20542
I was wondering (and wanted to liven up this forum a little) how many of you at stage III chose to take an adjuvant (additional treatment) after being diagnosed or if you chose to watch and wait for any potential recurrence. If you did therapy, how did you fare?August 13, 2012 at 12:27 am #55856lunchladyParticipant My husband, Paul, was diagnosed stage III nodular melanoma in April 2010 and choose to do interferon in June 2010. He followed his Dr.’s recommendation of only doing the 30 days. He tolerated the first week okay. The second week was much worse with aches, fatigue and loss of apetite. The third and forth week he was basically bedridden. His first local recurrence was February 2012. His Dr suggested Interferon again and he declined. Although he does not regret doing interferon, he says if he had to make the decision again (after gaining more knowledge) he would not do it. He is not convinced that the interferon made any difference at all.August 13, 2012 at 3:02 am #55857msue5Participant I chose watch and wait. I was first diagnosed stage 2B with a 3mm modular tumor on lt thigh with mitosis of 8. I was offered Inteferon but turned it down. I had a neg SLNB but in less than a year later had an enlarged groin node and had a CLND. This showed 1 pos node with extracapsular extension with evidence of melanoma in the surrounding tissue. I was encouraged to have radiation but still had an open wound so that could not be done. Even looking back at my early reccurence I still would have turned down inteferon.August 13, 2012 at 12:19 pm #55858 I chose a clinical trial.
In November 2010 I had an elarged lymph node removed from my left armpit. There was a second node removed as well because the surgeon didn’t like the looks of that one either. The large one was about 6 cm and the smaller one was considerably smaller but he wasn’t taking any chances. About a week later the diagnosis came back: melanoma was found in the larger lymph node. And I had no moles or any suspicious marks on my skin.
The surgeon advised me that I needed to see a melanoma specialist. We were new to the area so I had no idea where to turn. At that point I was in no mental shape to begin doctor shopping. The surgeon’s office made arrangements for me to be seen at Johns Hopkins.
At Hopkins they told me that they were going to remove the rest of the lymph nodes from under my left armpit and then determine a treatment from there. After two skin exams by the local surgeon, a skin exam by a dermatologist at Johns Hopkins and another skin exam by a surgeon at Johns Hopkins it was determined that I have melanoma with an unknown primary.
In January 2011, I had the rest of the lymph nodes from my left arm pit removed. This was done at Hopkins. No melanoma was found! It was only in the one node that was removed back in November 2010.
In February 2011, I got opinions from Johns Hopkins (Dr. Scharfman) and Abramson Cancer Center (Dr. Fecher) and the treatment options were the same:
* Clinial trial
* Watch and wait/frequent observation
I opted for the clinical trial for a Melanoma MAGE-A3 ASCI vaccine. I learned from both doctors that interferon wouldn’t really give me much of an edge over the watch and wait option. Also, giving self injections and being sick with flulike symptoms for an entire year didn’t appeal to me. I wasn’t 100% comfortable with the watch and wait either, so I chose the clinical trial. On this particular trial I had a 2 out of 3 chance of receiving the vaccine and I’d also be seeing doctors on a frequent basis, so for me this was the hands down winner. The trial was being offered at Hopkins so that’s with whom I opted to stay for treatment.August 13, 2012 at 4:42 pm #55859washoegalParticipant
I was dx March 2010, stage 3a. Interferon or Wait and Watch. Choose the latter. Reason for not doing Interferon was that as it was explained to me Interferon only worked in 5-10% of the cases and it was a very difficult treatment. I am usually am usually a very optimistic person, but in this case, I decided I really wanted one year of quality life if that was in the cards. Also, when added to the fact that Interferon did not extend the overall survival it just seemed like a no brainer to me. After I asked the Onc to repeat that phrase twice, it took me 5 minutes to decide! The Onc explained that I had another month or so to decide so I should go home and think some more, which I did. I discussed it with my husband and did some research. It all confirmed my decision. So I am happily here 2 years and 5 months later NED!!!August 13, 2012 at 8:53 pm #55860 These are really interesting responses. Linny, I’m curious now long you’ve been on the Mage A3 and how that has worked for you? I think it is an exciting trial. I do hope we will have more options for stage 3 very soon!!! It seems to me the time to give some of the stage 4 options to prevent the cells from ever becoming tumors and life threatening. Thanks again to all who responded, I hope we have more to look at.August 14, 2012 at 12:15 am #55861 I was very excited to have qualified for this trial. I got my first injection in March 2011. The first 5 shots were three weeks apart. The remaining shots are 3 months apart. God willing, I should be done with the shots in April 2013. I have a scan coming up on August 21 and I pray I’ll still be NED.
I asked Dr. Scharfman at my visit at the beginning of June about how the trial is going and if he’d heard anything at the ASCO conference about it. He told me that both arms of the trial were doing well and that more time was needed before any definitive results could be reported.
From the information I can find about the vaccine on the web it certainly looks promising.
Here’s a list of the possible side effects (bold print indicates what I’ve experienced):
* Redness, swelling, itching and pain where you have your injection
Flu like symptoms, fever and chills
Feeling or being sick
* Loss of appetite
Aching muscles or joints
The side effects are tolerable don’t last very long. My symptoms are usually gone within 48 hours. I am able to go to work the day after I receive my shot.
If the Phase III results look good, then this would be HUGE for those of us with Stage III melanoma.
For anyone who’s interested, here’s a web page with information about this vaccine and the trial I’m on:
http://cancerhelp.cancerresearchuk.org/trials/a-trial-magea3-as15-asci-after-surgery-for-melanoma-derma ” class=”bbcode_url”> http://cancerhelp.cancerresearchuk.org/trials/a-trial-magea3-as15-asci-after-surgery-for-melanoma-dermaAugust 14, 2012 at 11:34 am #55862 I do believe you have to be Mage positive to enter the trial and not sure of the percentage of folks who qualify. But it is promising! I should add the other stage III trial in some locations available is Yervoy vs. Interferon. That should yield some interesting results.August 14, 2012 at 12:17 pm #55863 Yes, you do need to be MAGE positive. If I remember correctly, about 65% of melanomas have this particular protein.
It’s interesting that some facilities are having Yervoy/Interferon trials. Isn’t the overall response with Yervoy better than that of Interferon? I’m a little puzzled as to why anyone would want to have such a trial.August 14, 2012 at 5:42 pm #55864washoegalParticipant
Linny, the people I have heard that have entered the Interferon vs Yervoy Trial have opted for it for a chance to get Yervoy at Stage III. The problem is many people drob out when the realize they are getting Interferon and they are having trouble keeping the right proportion-what a surprise!August 14, 2012 at 6:09 pm #55865 Interferon, although long ago was dropped as the gold standard in trials, is still FDA approved for stage III and the only one out there. Politically, it is still out there but perhaps not for long. They did just approve the Peg-Interferon which is 5 years and has been said to have worse side effects than the Intron A. No proof that either extend overall survival.August 14, 2012 at 7:02 pm #55866washoegal wrote:
Linny, the people I have heard that have entered the Interferon vs Yervoy Trial have opted for it for a chance to get Yervoy at Stage III. The problem is many people drob out when the realize they are getting Interferon and they are having trouble keeping the right proportion-what a surprise!
Yeah! What is surprise is RIGHT!
😆If I were on that trial I think I might also have dropped out if I found out I was on the Interferon arm. Not that the side effects of Yervoy are a walk in the park, but they do seem to be more tolerable than that of Interferon.August 19, 2012 at 8:48 pm #55867judgar2012Participant My husband had nodular melanoma jan. 2010. He went on interferon for a year. He had some hard days but he is glad he did it. his was 7.5 mm. It was deep. He is doing fine now no signs of it now. he has his pet scans done regular. So we are hoping it stays good.August 19, 2012 at 11:57 pm #55868 I’m very happy to hear your husband is doing well!August 20, 2012 at 2:51 am #55869MattDParticipant First of all, it has been a long time since I have dropped in and I have missed the give and take and knowledge! Second I just wanted to let you know that I have continued on my own adjuvant therapy of pizza and beer (home made by moi tonight) and am approaching 3 years NED.
More seriously, I did try a course of Leukine for a few months about 7 months after diagnosis and my surgery. (I was Stage IIIB.) I had a shot every day for 2 weeks (sorry, I have forgotten the dosage) and then 2 weeks off. I did that for 3 months until research came out that indicated that Leukine had no affect for people at my stage. At $900 per shot it seemed to me to be an unfair and unreasonable use of resources.
I handled the shots well. I had joint soreness for a few days at the beginning of each course but it wasn’t a big deal.
I will have to look into getting into a Yervoy trial.
Finally, keep me in your thoughts please. My wife has noticed a new mole on my head and I’m getting it checked tomorrow. They keep taking a piece of me at a time but I’m ok with it. Screw you cancer.
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