Problems but not Cancer Returned
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Problems but not Cancer Returned
The problem(s) is one I described late last year and felt was gone the last time I posted about my own situation back in April.In fact even in February most of it had cleared up. The last month and a half or more, though, it's returned full bore with no clear diagnosis of what has caused it and, so, of course no idea of how to fix it.
It could be that it has nothing to do with my year of nivo or my couple of months of ipi, but I have been the poster boy for immunological side effects including type 1 diabetes, thyrotoxicosis, adrenal insufficiency, pancreatitis, and hepatitis.
What's going on is what I reported late last year-- extreme pressure in head and sinuses, exhaustive fatigue, feeling like I am on a trampoline while walking (no vertigo), and feeling very unsteady when standing especially for the first couple of minutes. I seemed to get much better in the winter when I started taking mega doses of iron for an iron deficiency anemia and using some over the counter remedies for my sinus issues and gradually increasing exercise levels. But now I feel despite continuing to do those things, they are not helping much at all.
Dr. Lao, who is as baffled as I am with all this, feels that this might be an immunologically caused overreaction to my sinus problems, which do continue. But my case does not fit into any of the lists of side effects that have been publicly noted. He has not seen or heard of anything truly comparable.
I'm getting second opinions from a new ENT as well as regulation of my thyroid medications because of some dramatic change in my thyroid function numbers between the time I was feeling much better and a more recent blood draw. So there are things yet to be explored in the next two weeks. After that....???? Catherine spoke of my going back to Sloane, which I used as a second opinion a few years ago in the early days of the disease, but I don't know if a melanoma specialist there would be able to discover any more than the team here. Others have suggested Mayo or Cleveland Clinic for a general evaluation. Or patience?
Frank
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Re: Problems but not Cancer Returned
Melanoma International Foundation
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Re: Problems but not Cancer Returned
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Re: Problems but not Cancer Returned
Your account is absolutely fascinating, though I am sure you are not happy that your life with Keytruda and melanoma has led to this. It is also promising for me that through it I may find something helpful for my own situation. I've passed on your reply to my oncologist, Chris Lao, in Ann Arbor, who told me on the last visit with him that he saw my situation as a possible immunological over response, but one that he had not seen before.
I did have a meeting with an ENT physician assistant earlier this week here in Kalamazoo. She had the results of a very recent CT scan of my sinuses and had discussed my case with the doctor I have been trying to see for the last year plus. He is still not going to see me, since he and the assistant discussed my CT scan and agree there is no grounds for surgery. I am suspecting now that it is only surgical candidates that he sees these days.
She emphasized that my sinuses look pretty good, and that there is no blockage. I'll take her word for it. I can't read those CTs that well myself. She emphasized my need to see an allergist and to get allergen testing and probably to go through another round of allergy shots. It will be my third if I do so. Once when a kid, once in my early 40s, 30 plus years ago. She also was sure that deconditioning was my 2nd problem besides allergies. I told her I did PT twice a week (with a therapist). Her comeback--you should get it every day. ??? Do you know any therapists who see clients on the weekend? Anyway, no more visits to ENT folks for me. I'll just continue to take all the over the counter stuff they have recommended since I do continue to have sinus problems.
I am doing somewhat better, though, than I was when I posted a few days ago. But whatever the problem I have is it has stuck around. So I continue in the quest to find a solution while waiting to see the allergist and doing my PT exercises every day. I'm curious is you ever got a complete blood workup for various signs of autoimmune disorders. I did and had some abnormal readings, but none of them pointed to a specific disorder. If so, and you are willing, let me know what came out as abnormal. And to save the Forum readers, maybe do it through an email that you will find for me on the site. Thank you so much for sharing this with me. Frank
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Re: Problems but not Cancer Returned
I sent your comments/case on to my oncologist. He replied that many patients who have been through immunotherapy regimes have experienced inflamed sinuses. But, whatever is going on with my sinuses, mine are not inflamed. I presume he knows that from observation rather than scans?? I guess I thought my right sinus was inflamed.
Frank
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Re: Problems but not Cancer Returned
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Re: Problems but not Cancer Returned
I did take note of your earlier responses. I had an experience of the condition you describe back in 2014, and I was sent by my local ENT office to physical therapy to help alleviate the condition. The abbreviation for the cause of the vertigo that I was experiencing was BPPV. The therapist and his work with me, including the rearrangement of the crystals in the ear, proved very successful within a month or so, and I have not been bothered by this problem since. When I first tried to get in to see the ENT last year, his first reply was that I should go back to the PT. Unfortunately, my primary care doctor who made the referral said that I was bothered by vertigo. I never said this and this recent experience was much different than in 2014. The term "dizziness" is sometime used synonymously with "vertigo," but it is also used more generally to refer to a sense of lack of equilibrium or lightheadedness. My "dizziness" was of the latter type. In fact, I stayed away from using that word to avoid the confusion. I never really found a word that I felt was truly descriptive of how/what I felt.
So the repositioning of the crystals would not help this time around. Wish it would. However, better news is that I have been feeling much better the last 2 weeks or so. I wish that I could pin down which of the various changes I have been making such as medication, exercise, or air conditioning for removal of pollen that has been the market maker but I am not 100% but a good 70% better than I have been since early May. So whatever I have been doing or not doing I plan to keep moving in that direction. Feeling better has also allowed me to increase my activity level and exercise, and I am sure that is playing a significant part. Frank
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Re: Problems but not Cancer Returned
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