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July 2, 2013 at 10:35 pm #21422
my wife is 36, first melanoma mole in 2010, excision, sentinel node was positive. Went on interferon for 11 months. We had two wonderfuly years after that with reguar check-ups. Last eptember elevated markers show a grave picture – stage IV with one large lesion and one smaller lesion in abdomen area, some minor lesions in the lungs. We joined a clinical trail with zelboraf, which worked well for 8 months – lung lesions remained the same, small abdomen lesion diappeared, the large one was a bit smaller. Just this week the latest CT results came in – the large lession is progressing and we had to quit Zelboraf.
Our doctor is now suggesting we try chemotherapy (dacarbazine). Reading a lot on melanoma we were hoping for ipilimumamb, but she said it only works with stage IV M1a or M1b patients, and not with M1c patients?! (M1c=Metastasis to other organs, OR distant spread to any site along with an elevated blood LDH level.)
I would be so greateful if anybody could please confirm or deny this? Also, would you have other suggestions – should we say not to dacarbazien, get a secod opinion (any suggestions for good written review of mediacal records by mail) or rather search for clinical trials?
There are these two we might be eligible:
1) A Randomized Open-Label Phase 3 Trial of BMS-936558 (Nivolumab) Versus Investigator’s Choice in Advanced (Unresectable or Metastatic) Melanoma Patients Progressing Post Anti-CTLA-4 Therapy
2) A Phase 3, Randomized, Double-Blind Study of Nivolumab Monotherapy or Nivolumab Combined With Ipilimumab Versus Ipilimumab Monotherapy in Subjects With Previously Untreated Unresectable or Metastatic Melanoma
Thank each and everyone for your replies, I wish all the best to you, stay positive!
AndyJuly 3, 2013 at 12:45 am #61661NYKarenParticipant
I am not a doctor, but based on what’s been recommended to others, I’ve seen people go straight to Yervoy or to an PD1 trial. Yervoy advantage is that it’s already FDA approved so your wife could start right away.
Are you being seen by a melanoma expert? If you tell us where you live, Catherine will absolutely send you to the right place.
KarenJuly 3, 2013 at 1:53 am #61662dkmcParticipant
Don moved right to Ipi when he had lung mets. He always had a high LDH from the beginning. So he was M1c and was a total responder. 14 wonderful months NED(the longest since stage 3 diagnosis in 2009) But alas melanoma struck again & he just had a colon resection and am hoping he will get another round of Ipi. So he is NED again. : ) We will see onc later this month. Anti pd1 seems to be the drug to try & get if tumors are not resectable. I don’t think Don would qualify since he now has no measurable tumor. Chemo would be Don’s last resort. Catherine always has good advice. KarenJuly 3, 2013 at 3:35 am #61663Sandalwood36Participant
After seeing first hand the devastation that chemo inflicted upon my husband Bob (with absolutely no benefit), I strongly recommend against it. Truely wish that we could do it all over, skip chemo, and go straight to PD1 trial. Wishing you strength and guidance in navigating all available options.July 3, 2013 at 12:01 pm #61664lak1Participant Ipi has to be used early in the disease process. I am slightly different being ocular melanoma. I had ipi after liver resection and it took a long time to see antigen responses over a year. If I had not had it with minimal disease i would not have survived long enough to get a response.
Go for anti pd1 first choice second choice ipi avoid Dacarbazine it is of little use and does harm the immune system liver etc. Although there is a measurable response in skin melanoma it is still tiny 10 – 18 % quoted and not long lasting. Ocualar melanoma it is less tha n 1 % so an easier decision.July 3, 2013 at 1:14 pm #61665
Thank you all for your replies:) I kind of got the confirmation of my understanding that chemo is the last option – we will need to have a thorough talk with our oncologist. The thing is, we live in a small EU country (Slovenia), where we only have one oncological institute, so any other melanoma specialist we would have to find oudside the country. Given the severity of the situatuion we are of course exploring all options. Costs could unfortunately be a major issue:( Clinical studies therefore seem to be the best options – I will do my best to get us into one.
If there’s anybody reading this from EU – do you know if there are any restrictions in joining a clinical trial in another EU member state? We would be prepared to travel to other countries if necessary.
Thank you all, it means to world to us to be able to get such feedback!
All the best,
AndyJuly 3, 2013 at 3:23 pm #61666lak1Participant
Im in the UK but dont have many options as rarer form of melanoma
LesleyJuly 3, 2013 at 4:28 pm #61667
You can most likely enter a trial in neighboring countries but with some red tape! Italy, Spain, France and Belgium would be good places to try. Please look at our Global Sources above:
or try the clinical trial you wish to enter, http://melanomainternational.org/web-resources/global-resources/ http://www.clinicaltrials.govand contact the global source for the trial for contact information. It can be a lot of work, but you do need to get to an expert. The current information you are receiving is incorrect. Let us know how we can help further. (also find out if your wife is BRAf positive or not, ask to have the tumor tested.)July 3, 2013 at 4:38 pm #61668 Dear Catherine,
thank you so much for your reply. I am heavily browsing through available clinical trials. My wife is BRAF positive…a short decription of our path:
My wife is 36, first melanoma mole found in 2010 on her back, excision, sentinel node was positive. Went on interferon for 11 months. We had two wonderfuly years after that with regular check-ups, aspiring to maybe raise a family. Last september elevated markers show a grave picture – stage IV with one large lesion (10cm) and one smaller lesion in abdomen area, some minor lesions in the lungs, none in the brain. We joined a clinical trail with zelboraf, which worked well for 8 months – lung lesions remained the same, small abdomen lesion actually diappeared, the large one was a bit smaller. Just this week the latest CT results came in – the large lession is progressing (now 12cm), LDH ans S-100 markers are elevated and we had to quit Zelboraf. We are afraid that time is not on our side, the abdominal lesin is terribly scary.
Our doctor is now suggesting we try chemotherapy (dacarbazine). Reading a lot on melanoma and getting some other opinions and info on treatmnet options we doubt that is our best option. Unfortunately there is only one oncological institute in our country, so getting a second opinion is not simple. We are putting all our hopes in clinical trials.
We are sceheduled for chemo on Monday, but I guess we shold postopone it until we get a reply from some clincal trials (found 4 possbile so far). Thank you!July 3, 2013 at 9:06 pm #61669
Yes, do postpone until you find something more suitable, such as the Merck Pd1 which has a lot of trials. Here is one and the contact in France: MSD France Recruiting
Contact: Dominique Blazy 33 147548990
Let us know what you find out.July 8, 2013 at 12:53 pm #61670
so in order to hopefully buy some time we started today with dacarbazine, but are still investigating other options. As regards Ipi and M1c Stage IV patients we found out today there are no medical restraints, merely financial ones, so at least that question is resolved. I am however wondering about your experiences of ipi after vemurafenib. Are there some recent studies speaking in favour of it or is the case that ipi rarely works if patient had progressed on vemurafenib. We are getting some contradicting information.
We have not given up on clinical trials, we will start contacting study sites tomorrow. Also what do studies say about ipi and heavy tumor burden…what is actually considered a heavy tumor burden?
My wife is extremely brave, she amazes me each time, and we are keeping it strong. Keep your fingers crossed!
All the best to you all,
AndyTJuly 9, 2013 at 12:16 pm #61671
I would look for a Pd1 trial to do after vermura (Zelboraf). The theory right now is doing the BRAF drugs first, debulks the tumor burden and then immunotherapy which works slower can keep the body fighting the disease. IPI (Yervoy) has a lower response rate than PD1. Did you locate Pd1 nearby? Dacarbazine, sadly has a very low response rate but can have side effects that are unpleasant.July 10, 2013 at 10:06 am #61672 Dear Catherine,
the MSD France contact does not seem to work, I was unable to get a call through. Would you have any other contacts? I’m trying to contact all relevant study sites.
Thank you so much in advance,
AndyJuly 10, 2013 at 12:08 pm #61673
Email me personally: email@example.com I will send you a list. But for many of these PD1 trials you need to have failed Yervoy first. There are some others coming up I will check into. There are many trials in nearby countries: Italy, France, Germany, Switzerland, Sweden, Spain, Norway, Netherlands. there will be red tape to get through as always!!
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