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August 30, 2014 at 5:47 pm #22156JBunyanParticipant
I am in UK and had grade4 metastatic melanoma on my arm in 2008 (wide excision). My dermatologist said that to remove the nearest lymph node was not necessarily a good idea as if it were clear there is no guarantee that metastases will not develop elsewhere, and if positive was no guarantee of non recurrence. Surveillance consisted of physical examination only. By pure chance I had a kidney removed 4 years later (not related to melanoma) but on staining a single metastatic old burnt out lymph node was found in the kidney fat. CT, PET and MRI scans found no more deposits for a year, when one came on a hip – subcutaneous , removed by surgery . By this time I was seeing a top Professor of Experimental Oncology. A few small mets came, and he tried to get me on to a Ipi / PD1 trial run by a drug company, but I was turned down due to the prior kidney issue . Eventually in Nov 2013 I had a course of 4 doses of Ipi, which has worked. I would suggest in your friend’s case the first thing to establish (by a biopsy on a melanoma) is whether he is BRAF wild or mutant, as this may determine aspects of treatment. In UK the use of Ipi or other very expensive or therapies with strong side effect possibilities is not usual until metastases are found. Also at the moment the PD1 either alone or with Ipi is not available except via drug trials.
Clearly, he will need CT and or MRI scans. My Gamma Knife Surgeon (2 small brain mets) is in fact Swedish – Prof Bodo Lippitz, who flies weekly to UK. He is a Oncology Neurosurgeon but his team may give you advice on other issues.(Google for Swedish contact details)August 30, 2014 at 6:12 pm #65338
If the intransit metastasis are widespread, or a distance from the original lesion, then that is stage IV disease which is internally traveling. I would therefore request immunotherapy, perhaps IPI to start so he can get to PD1, the immunotherapy that works better than IPI. Did you mention if your friend was Braf positive or negative? That would another therapy to consider. Have you contacted Bettina for her recommendations in Sweden? She would know as she lives there and her husband was a patient.August 30, 2014 at 6:44 pm #65339August 30, 2014 at 6:57 pm #65340August 30, 2014 at 10:18 pm #65341msue5Participant I would skip the surgery and do Immunotherapy. His Melanoma is on the move and you just can’t
Keep doing surgery after surgery. I also had a non healing wound and have had to have 4 serious surgeries due to that. It makes no sense to remove one by one when you might stop it in its tracks now. I did Ipi and finished one year ago and so far just a few pesky little tumors that are active are all that’s left after having metastisis to four different areas. Just my opinion. I know it’s hard to have to decide what treatment is right. I would feel differently if it was 1 tumor that could be removed by minimally invasive surgery. Hope you can come to a decision that you will be comfortable with. Hopefully others will chime in and offer their opinions. Also my Dermatologist Oncologist would only do 1 large incision or 2 small ones at a time. His reason- staph infections. He said the more incisions
The higher chance of getting a staph infection.
Mary SueAugust 31, 2014 at 12:11 am #65342August 31, 2014 at 12:26 am #65343August 31, 2014 at 1:46 am #65344msue5Participant
A trial would be even better because of the close monitoring. I think I remember you might have to have a break for surgery while on Ipi but not sure. I think the odds for Ipi are more like 20% response. Even if not successful there is still BRAF drugs and Anti Pd1. Even if he is stage 3 he can qualify for stage 3 non resectable. Hope you can influence him to be open for at least a second opinion. I was the 1st Ipi patient at my small semi rural oncology practice. My Oncologist and the infusion staff did great. I also have Lupus and Ipi was contraindicated but I really didn’t have much choice. My oncologist did a ton of research and handled the complications by the book. He was in touch with the drug company weekly as they were interested in how an autoimmune patient would fare. No trials were done for Ipi and autoimmune disease. My oncologist has continued to keep current on treatments and he is always right on the mark. Hope you can come to a decision that will satisfy you both.September 2, 2014 at 3:44 pm #65345September 2, 2014 at 6:10 pm #65346 I think he is having the normal anxiety and depression that follows this diagnosis. I would try to get him to see our video of 6 patients and how they coped: http://melanomainternational.org/events-webinar/patient-experience-video
He may find it uplifting. It is great he wants to exercise, that is a good coping mechanism and also meditation. Then try to set up something preliminary with the expert and go with him?September 2, 2014 at 7:54 pm #65347September 3, 2014 at 12:48 pm #65348
Your friend is lucky to have you!
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