› Forums › General Melanoma Community › Side effects from clinical trial and other ?’s
- This topic has 6 replies, 2 voices, and was last updated 9 years, 8 months ago by
Ablessedfamily6.
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- June 29, 2016 at 2:03 pm
Hello everyone and thank you in advance for any insight you can provide! I was diagnosed with stage 3b melanoma in 2007: 2.9mm ulcerated primary with micro mets in one lymph node. I was blessed with an aggressive surgeon and declared NED two months after diagnosis. I went on to participate in a gp100 trial at NCI NIH. After five years of clean scans, I was released from NIH and began follow up at UVA. I've had many, many biopsies over the years and everything has been caught at "mildly atypical". For some reason this year, I've had two spots make it to "moderate/severe" and also had two Basal Cells pop up. :-/
First question, is there anything else I could be doing besides the biopsies and waiting? The recent issues have me nervous. Currently, I have 3-5 biopsies every 3 months, blood work every 6 months and CT every year.
Next question, any one know of any long term side effects from gp100? I'd never thought to consider the clinical trial as the cause of other health problems, but my general physician suggested it and now I need more info, but there isn't any. :-/ Since 2007, I have been diagnosed with Chronic Fatigue, Narcolepsy, Glaucoma, hypoesthia (sp?), peripheral neuropathy, migraines, inflammatory disorder of the skin, tinnititus, abnormal heart rhythms, tachycardia, hypoglycemia, dis autonomic and sluggish digestive disorder. The whole time we have been looking at MS as the possible cause, but frequent scans show no lesions. My dr said that the more research coming out on immunotherapy makes her believe that the trial could be the cause of my health problems. FWIW, before 2007 and between flare ups I am a very fit and active person. I bike and hike regularly and run whenever my muscles will allow it. Many of my specialists have billed me as the healthiest sick person they treat. I do respond well to prednisone, but only at 60mg+ per day and I hate to think the effect that is having on my body long term.
Anyways. I would appreciate any opinions or insights. I feel like I'm losing perspective of the situation. I'm trying to stay grateful for the time I've been blessed to have, but starting to feel like a sitting duck that isn't doing anything to protect itself. :-/ Thank you again!
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- June 30, 2016 at 5:46 pm
It makes logical sense here that immune system disturbance might be the cause of your health problems here, but unfortunately I have no info or data re: GP100, or specialized knowledge to help you out.
Total shot in the dark here, but I wonder if you or any of your doctors have ever considered Lyme Disease as a possibility? I live in part of the country where Lyme Disease is quite prevalent and yet patients sometimes go several years with doctors looking at MS, chronic fatigue syndrome, fibromyalgia, and other auto-immune conditions like lupus before a late diagnosis of Lyme Disease. It can present differently in different people, and I've heard many stories of people with persistent symptoms similar to yours eventually being diagnosed with and treated for Lyme.
Wish you the best of luck with getting some answers and relief.
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- June 30, 2016 at 11:21 pm
Lyme disease was one of the first theories and they test for it frequently, just in case. I love the outdoors so it would've been a natural fit. Luckily my dr doesn't mind doing some research and treating what we can. Unfortunately, my insurance company is insisting on a diagnosis. Understandably, the dr would like to know what it is before signing her name to it. :-/
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- June 30, 2016 at 11:21 pm
Lyme disease was one of the first theories and they test for it frequently, just in case. I love the outdoors so it would've been a natural fit. Luckily my dr doesn't mind doing some research and treating what we can. Unfortunately, my insurance company is insisting on a diagnosis. Understandably, the dr would like to know what it is before signing her name to it. :-/
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- June 30, 2016 at 11:21 pm
Lyme disease was one of the first theories and they test for it frequently, just in case. I love the outdoors so it would've been a natural fit. Luckily my dr doesn't mind doing some research and treating what we can. Unfortunately, my insurance company is insisting on a diagnosis. Understandably, the dr would like to know what it is before signing her name to it. :-/
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- June 30, 2016 at 5:46 pm
It makes logical sense here that immune system disturbance might be the cause of your health problems here, but unfortunately I have no info or data re: GP100, or specialized knowledge to help you out.
Total shot in the dark here, but I wonder if you or any of your doctors have ever considered Lyme Disease as a possibility? I live in part of the country where Lyme Disease is quite prevalent and yet patients sometimes go several years with doctors looking at MS, chronic fatigue syndrome, fibromyalgia, and other auto-immune conditions like lupus before a late diagnosis of Lyme Disease. It can present differently in different people, and I've heard many stories of people with persistent symptoms similar to yours eventually being diagnosed with and treated for Lyme.
Wish you the best of luck with getting some answers and relief.
-
- June 30, 2016 at 5:46 pm
It makes logical sense here that immune system disturbance might be the cause of your health problems here, but unfortunately I have no info or data re: GP100, or specialized knowledge to help you out.
Total shot in the dark here, but I wonder if you or any of your doctors have ever considered Lyme Disease as a possibility? I live in part of the country where Lyme Disease is quite prevalent and yet patients sometimes go several years with doctors looking at MS, chronic fatigue syndrome, fibromyalgia, and other auto-immune conditions like lupus before a late diagnosis of Lyme Disease. It can present differently in different people, and I've heard many stories of people with persistent symptoms similar to yours eventually being diagnosed with and treated for Lyme.
Wish you the best of luck with getting some answers and relief.
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