- This topic is empty.
September 14, 2013 at 4:43 pm #21576stangParticipant
I saw this on Yahoo this morning and thought I’d post it to help them get more signatures.
Catherine, I’m not sure how you’d want to handle it so if it isn’t for this forum, use your judgement.September 15, 2013 at 11:14 pm #62493
I’ve been working with this family and hoping to get some breakthrough for him. He may get into an ADC trial, last I heard. Not sure PD1 would be useful at this juncture, but he has the ears of the pharma, but they are very reluctant to provide pd1 in compassionate use because of legalities and his condition. So it is a terrible predicament for sure. I thought of posting his story, but I’m not sure how the petition will help. I hope to hear more soon and will update.September 16, 2013 at 9:12 am #62494lak1Participant Its a very difficut situation . I am in a similar position and so how many thousand other people are there in the world who also would like the drug under these terms. In some ways skin melanoma have more chances of getting treatment than the rarer melanomas ocular(me) and mucosal and acral. We are excluded from most trials and certainly there is only the vague posiblity of a Merck trial in Eu for us if we have had Ipilimumab. If they were to give it to all of us then they would need to make a lot more. But then they did that with ipi. So its hard to take. However his problem seems to be a clinical one , where the drug may harm him so there is actually a contraindication to him having it. Some people who had ipi got such severe gut problems that their guts just rotted despite treatments and surgery and it was awful for them. Thats how the contraindications were made to avoid torturing people. I understand his desire to do something as I too have that strong desire. However i can understand the drug company not wanting to give him something that they think may well hasten his death.October 12, 2013 at 11:35 pm #62495jamesaParticipant Here is an update on Nick.
Catherine, since you are working with this family, is there any chance to get him into Jonathan’s clinical trial??
This is such a sad story. I know that there are others in the same situation. Merck & BMS need to give these patients “compassionate use” access to this drug.
Catherine do you know if Merck or BMS will be granting “compassionate use” access to this drug in the near future?
Catherine, thank you for the help you give everyone. God Bless you.
JamesOctober 13, 2013 at 10:46 pm #62496
Yes, I’ve been in touch. His situation is such that he can’t get into the ADC trial as I hoped. I have found both Merck and BMS very reluctant to do any compassionate, actually it is expanded used for this agent. I’m not sure what to believe whether there is shortage of product or legal concerns. Both as all pharma, have armies of lawyers. So I hope his surgery goes well and someone finds the compassion to lend him a hand at the Pharma.October 16, 2013 at 10:23 am #62497mazz75Participant Dear Catherine
I have been following this website for more than a year since a close family member got diagnosed with metastasized melanoma. She has been Ned on zelboraf but recently after an MRi doctors discovered 2 brain mets. Our oncologist sent the MRI to Dr Gore from royal Marsden London and we are waiting for his reply. I know she has many options left with the recent advancements however the best medicine is Anti pd1, and its very difficult to access a clinical trial. I would like to know if you have any dates of approval . It’s so unfair that such a promising medicine could take years .October 16, 2013 at 12:24 pm #62498
Sorry, I don’t know when Pd1 will be approved. I think there is vigorous competition for it and the trials are full and active. Much depends on pharma and the FDA in the US. For the UK and Europe it may come later and there are more hurdles. I wish I knew..
- The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.