Paul

Clinical Trials for IIIa?

I find it much easier to read and comprehend patient stories than the clinical-research-speak that is quite predominant on the Web. After reading a few stories I think my case is fairly typical. I recently had a mole removed from the bald spot on the back of my head on 6/5/12 (my friends were telling me to get it looked at and nobody would have seen it had it been elsewhere--but then again it would have been exposed to less sun), and it was a 1.3mm deep, nodular, level IV melanoma. I had the wide area excision and sentinel node biopsy performed 7/3/12 (that was a long wait for me!).Turns out I had two sentinel nodes on the right side of my neck, one just before and the other below my right ear. One of them had a micrometastisis and the other was clean so stage IIIa. I have been offered and rejected interferon. No PET scan has been performed. I have been offered to participate in a clinical trial where they will perform a CLND. I believe I am developing lymphadema from one of the two nodes as the sutures have begun to leak a clear yellowish fluid. The sutures on my head opened and I am going to have plastic surgery on 7/18/12 to close it.

The thing that is hard to swallow and I see the same thing from other people is the "wait and see" approach instead of being proactive. The desire to "do something about it" is big! I have read that I could try Leukine as an adjuvant treatment if my insurance company will pay for it. I have researched the various clinical trials throughout the USA and I don't see any applicable to IIIa that have hope of fighting the disease. So right now I am spending a lot of time reading up on this disease. Thank God for the internet! It must have been horrible before the web for patients to try and understand what they were up against. I would love to hear from people that are aware of clinical studies for IIIa.

Take care! – Paul.

Comments

SABKLYN - (8/30/2012 - 12:49am)

Hi Paul
Dr. young at Memorial Sloan Kettering in NY may still be recruiting for a phase I study which creates vaccine from your stem cells and enables them to target melanoma more effectively.

There is also a Phase II study at NYU and Roswell Park (Roswell is in Buffalo) that is supposed to be promising....your tumor has to express a particular type of substance NYESO I think. In either case, I believe the National Cancer Institute has a great search engine for current clinical studies.

Anderson in Houston may also be a good place to search

Hope that helps

Good luck

gwyneth227 - (9/7/2012 - 12:26pm)

How did the plastic surgery go Paul? Any better luck with the lymphadema?

Keep the faith

Gwyneth

_Paul_ - (9/30/2012 - 2:08pm)

Hi Gwyneth,

Well the plastic surgery didn't quite get the job done. I have a pretty decent sized scab on my scalp which doesn't appear to be going anywhere anytime soon. My plastic surgeon thinks it is attached directly to my skull so I am in no hurry for it to fall off! I would rather have an ugly scab than bare skull! Besides, it is an excellent opportunity for a scary custome this coming Hallowe'en. ;-) The plastic surgeon says that the wound will eventually scar over, but he may try another surgery once the scab falls off.

The lymphadema is pretty much gone. There is still some swelling but nothing like before.

Take care - Paul.

_Paul_ - (9/30/2012 - 2:15pm)

Hi Sabklyn,

Thanks for the pointers. I found a GVAX trial at Johns Hopkins open to IIIa patients and I just got back from there this past Thursday for their required screening. I should know pretty soon if I will be admitted into the trial. I like this one because it doesn't have all the terrible side effects of some of the others.

 

Take care - Paul.

LibbyinVA - (2/9/2013 - 4:25pm)

Sorry to reply when I do not have any recommendations, but your story was very interesting to me. I am stage IIIb and have been NED for 7+ years. Your posting brought me up to date with how stage III is currently handled, especially the clinical trial info. I was eligible back in 2006 for several trials, many of which had horrific side effects that I was not willing to take on. So, I ended up in a clinical vaccine trial at NYU but have heard recently that all vaccine trials have failed. So, who knows what made my survival to date possible. I just keep enjoying life as it comes. May sound trite, but melanoma stopped me in my tracks and completely changed my life for better and for worse, but mostly for the better.

Take care, I will be interested in hearing about your clinical trial.

Libby
Stage IIIb, NED 7+ yrs

Never, ever give up hope!

kevinkyle - (2/28/2013 - 12:05pm)

Look into the University of Iowa Head and neck surgery center