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November 11, 2013 at 11:03 pm #21663GiaLParticipant
I’ll tell you all our story. We are from Ecuador (and currently live there). In 2010 my father (72 years) had a malignant melanoma tumor removed from his scalp. They also checked his most nearby lymph node and it was clean. Therefore, he thought (we all did), that the melanoma was gone completely. No one told us that there was still a chance it had somehow spread, and that two years later he would be diagnosed with stage IV. No doctor in this country told us that a good choice would have probably been to take interferon just in case.
Anyhow, forward to 2013 and he felt a little but of pain in the right side of his abdomen. The doctors saw three tumors around his intestine area and liver. After 2 weeks waiting for the tumor results he got a tomography of his lungs and there were two extremely little “nodules” (that’s what the doctors called them).
Here in Ecuador, the health system s–cks. Sadly, he does not have a good health insurance so he has no treament covered. A doctor in the States contacted him miracously and invited him to go and visit him for a free consult! (I really cannot believe there are still people like this out there..) During his visit he told my father that he was going to make everything possible to include him in a trial of Zelboraf + Mek + Yervoy. Again, miracuously, he did. So he asked my father to travel again to the states for the final lab tests and signatures in order to start the trial. On the last day, the doctor got my father’s brains scans, and he had developed 2 brain mets (in a month!) So he was not accepted in the trial. It was so sad! We were almost there!
So far he did not have any signs or physical symptoms or pain. The doctor in the states told him to come to Ecuador, get on Zelboraf (our national health system is so bad that they do not have it, and they have a thousand bureaucratic rules until a hospital can buy it from a private pharmaceutic company. We are still waiting for them to get it, however, until the day arrives my father’s boss has voluntarily bought zelboraf for him and will continue to do so until the national health system approves it. and the doctor also told him to get radiation on his brain. and after a month go back again to the states and he will get him the yervoy free of cost.
Now my father has pain. He has pain in his legs, he is weak. We did not know if it was the Zelboraf side effects or something else. So he went and got a scan and they discovered a tumor in his vertebrae. The doctor here tells him that he has to get radiation ASAP or he runs the risk of becoming paraplegic. The doctor in the states does not respond to his calls or anything. However, we do not know if:
Can he get radiation to his spine while on Zelboraf?
Does the yervoy work for his spine tumors? Is it still necessary to get radiation?
Living over here, and having the complication of money and bad doctors (ignorant might be a better word) is a terrible combination. (can you believe there are only 6 people reported with melanoma and the brag mutation and none are getting zelboraf!)
Anyhow, my father is still doing fine minus the pain in his legs. He goes out to eat, he drives to and from his office, etc. But mentally, this is so stressful! Any information will help. I just needed to get this out of my chest to people who know a thing or two about it!November 12, 2013 at 12:21 am #62959Catherine PooleKeymaster
Welcome to our forum. So sorry to read your story. Radiation is the best therapy usually for bone mets and it works to relieve the pain of the tumor pressing on the bone. So yes, he should go ahead with it. I don’t know of any issues with the combination of zelboraf and radiation or yervoy and radiation. Perhaps he should discuss with his doctor there? I will see what I can find out in the meantime. You are wonderful to care for your father in such generous way.November 16, 2013 at 8:31 pm #62960VioletaParticipant Catherine, GiaL, related to the combination yervoy +radiotherapy: this summer my sister had Yervoy and radiotherapy for her left arm tumor and for some enlarged limphnodes. The treatments were advised by a known doctor/prof from NKI -AVL, Amsterdam. Probably this combination is controversial but he considered that it might be good for my sister. I think radiotherapy helped her by slowing the tumor growth and delaying the big pains.
GiaL, I am so sorry for you and your father. I hope you will find an way to get the right treatments.
Regarding the combination zelboraf+radiotherapy, here is our experience: last year in October we asked the same doctor/prof. from Amsterdam if my sister can do radiotherapy in the same time with Zelboraf treatment. He said that this can be done only if you stop the treatment with Zelboraf as follows: 5 days before radiotherapy and 5 days after radiotherapy. He did not advise radiotherapy while having Zelboraf treatment. I spoke personally with him and I wrote everything he said immediate after discussion, that why I can give you this answer after so long.
Related to the brain tumors, stereotactic radio surgery was good for my sister, her tumor brain decreased in size.
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