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April 28, 2014 at 1:50 pm #21945
My husband has been diagnosed with stage IV melanoma in October 2009 from a cutaneous melanoma excised 10 years ago .
Then had metastasis in the mediastinum , lungs and axillary nodes. Were few ( 3 in the lung and 3 mediastinum ) and small.
We live in Spain , and is treated in the Hospital Clinic of Barcelona.
Since then received the following treatments:
1 – Dacarbazine + MEK inhibitor vs Placebo: good response with reduction of the diameter of all tumors .
Treatment with Dacarbazine 1 year and then continued for another year, with trial medication until occurrence of cerebral metastases.
Leaving the trial , we are told that all that year he had been with placebo.
2 – Ipilimumab : serious toxicity after dose 1 , presenting severe colitis which forced him to be admitted to the hospital for 1 month and receive two Remicade dose and high-dose corticosteroids .
3 – Vemurafenib : 1 year and a half of treatment decreased the size of the brain metastasis and the other , so far that has appeared in resistance and growth of axillary lymph suprapectoral .
The oncologist tells me that at this time, no other available clinical trial and that the only option is chemotherapy.
No open trials of anti PD1 available in Spain and expanded access to reach Europe in 6 months .
It is also possible that with a history of toxicity ipi , it leaves out the criteria for inclusion of immunotherapies .
My husband is 47 years old and in excellent physical condición, and we have 2 children who need a father.
We are lost .
Anyone know of any other alternative in Spain.
Thank you very much .
Diana.April 28, 2014 at 6:24 pm #64228
I’m so sorry you are having to go through this. I wish I had specific information to treatments available in Spain but unfortunately I do not. Do you know what dose of Ipi your husband received? While you continue to look for a treatment or hope for PD-1 treatment to become available have you thought about trying a much reduced infusion of Ipi. My understanding is the High does Ipi is considered to be 10mg/Kg and the low dose is considered 3mg/Kg. Maybe you could see if they would try 1 or 2 mg/kg. It seems like your husband is very sensitive to the drug so maybe he doesn’t need as much as most people to get benefit. This is not the best option but one you may want to consider if other treatments do not become available. I’m hoping Catherine has some better options available to you. Best of luck to you.
BrianApril 28, 2014 at 9:53 pm #64229
Toxicity to IPI doesn’t mean the same for PD1. Unfortunately, it will be a while until the EAP reaches Europe. You could come to the states and enroll him here. The EAP is opening in a lot of places, and already the Mayo clinics and a few in California are distributing it. I will pass on your case to our sister organization in Europe and see what they suggest for you as well. Check here in the meantime to see if there is a trial that might be suitable: http://clinicaltrials.gov/ct2/results?term=melanoma+spain&pg=2April 29, 2014 at 6:48 am #64230 Thanks Brian and Catherine, with respect to ipi, is correct what you say because my husband has received 10 mg / kg.
The problem is that in Spain is not approved and can only be managed within a trial, and I imagine that this toxicity, would be out of the inclusion criteria.
I keep looking.
Thanks for everything.April 29, 2014 at 10:57 am #64231mazz75Participant
We are in the same sad situation
My sister was being treated at royal Marsden London, she took Zelboraf that worked for some months. Afterwards she developed brain tumors, which were surgically removed last November
She was given whole brain radiation and IPI , she managed to take all the 4 doses, but unfortunately 3 new brain mets appeared in in the last scans.
Docs said they can offer nothing more , we are desperate since she is only 28 years old.
MaggieApril 30, 2014 at 10:09 am #64232
the oncologist is looking for an alternative.
When I have the information’ll let you know, maybe I can help.April 30, 2014 at 11:18 am #64233mazz75Participant
Good luck for an alternative and yes please keep me posted .
MargaretApril 30, 2014 at 3:11 pm #64234AnonymousGuest
Sorry to hear about your sister. It is a tough situation to be in.
There is some thought that High Dose IL-2 given 1-2 months after IPI may enhance the effectiveness of the IL-2 treatment (which as a treatment by itself has a complete response rate of 5-6% and ~15% partial response). Responses tend to be “durable”, meaning they last a while if you do get a response.
It’s a physically tough treatment but if that is the only other possibility, then, if it is offered in your country, she may want to consider it.
JeffApril 30, 2014 at 6:11 pm #64235
I’m not convinced that IL2 is a good choice as the evidence isn’t compelling. In fact, I worry it does the opposite at this stage of treatment modalities. I know there’s an effort to find a use for IL2 and it is amazing in a small population (6%) but no response for the majority (94%) Most countries with socialized medicine do not use it because of the huge cost and hospitalization associated with it.May 1, 2014 at 12:31 pm #64236AnonymousGuest Yes, I was hesitant to mention it but if there is nothing left and it’s available…..May 1, 2014 at 2:25 pm #64237 I think before giving all for lost worth a try. Here the ipi is not approved and can only be used within a trial, and IL2 is not available.May 1, 2014 at 2:35 pm #64238 Catherine,
Have you seen this study being done by Dr. Curti in Oregon? It’s another twist on IL-2 treatment and the results have been pretty impressive in the stage I trial recently completed. 66% complete or partial response for 12 patients. You still have the rough toxicities but the success rate makes it a little more tolerable.
Unfortunately this info probably won’t be able to help Diana but I think it’s another viable option that may be available in the future.
BrianMay 1, 2014 at 3:09 pm #64239
Actually looking at the data again more closely there were 7 melanoma patients. 1 had a CR and 4 had a PR. That comes out to 71% with a CR or PR.May 1, 2014 at 9:24 pm #64240 I have to see large numbers to be a believer.May 2, 2014 at 1:20 am #64241 Yep, definitely with only 7 there could be a statistical anomaly.
Here’s phase II looking for 44 patients. Time will tell.
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