New Developments;No Diagnosis

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.

New Developments;No Diagnosis

Postby buffcody » Mon Oct 09, 2017 1:20 pm

Some weeks ago I brought up the problems I have been experiencing since getting an all clear sign of NED on my one remaining tumor in my abdomen. I stopped nivo treatment in late May. A more recent PET and brain MRI continue to show me met-free. So I should be out celebrating. Or shouting it out Dave Ramsey style. Not quite.

As recent weeks have gone by I have found myself more and more incapable of much activity than just walking around our small apartment, and, of course, going to doctors' appointments and clinics or hospitals for tests to figure out what my symptoms are resulting from. I have my oncologist stumped, but he is concerned about possible neurological side effects from the immunotherapy. I had a course of Ipi for 12 weeks in late 2012, and my latest go around was ipi for one treatment with nivo and then about a year of nivo alone. I credit the nivo with doing away with that final inoperable tumor. But as a result, I believe, of the earlier ipi I experienced 3 autoimmune disorders: Grave's disease, Hashimoto's thyroiditis, and adrenal insufficiency linked with hypophysitis. A couple of months after beginning this second set of immunotherapy, I was diagnosed with type 1 diabetes. Number 4.

My symptoms, which I have described before, and not all of them probably relate to one disorder or to immunotherapy as a cause, include acute and chronic sinusitis with a series of infections that have gone to my chest. I think I'm on my 4th in the last few months; the symptoms change but don't go away including, besides the congestion, lots of pressure in my sinus areas. I am also experiencing increased difficulty with walking and find that brings on more pressure in my sinus and facial area. I feel lack of equilibrium on my feet generally now and have succumbed to my need to be pushed around in a wheelchair if I have to go anymore than 100 yards or so. A cane has become a constant companion when I leave the apartment as well.

It was difficult to find a competent neurologist who was not scheduled till near the end of the year, but I fortunately saw one last week. He ordered an extensive list of blood tests, many of which I had had before, some of which never or too many years ago to remember. The findings in a nutshell and leaving out ones that while not normal do not hook up with the problem in my understanding (I became quite a student of blood numbers over the last 5 plus years as many of you have as well I am sure.) were very, very high C reactive protein, positive ANA test in its 4 different measures, low SED. What it is looking like right now, unfortunately, may be lupus, another autoimmune disorder that I have never seen written up as a side effect of either ipi or nivo. I sure hope it is not what is going on, but I will be seeing a rheumatologist for my newly diagnosed osteoporosis (Prednisone?), and rheumatologists are the ones that can make sense of those number if anyone can and also are the go-to doctors if you have lupus or something of that ilk.

Part of the reason for this posting is sharing, good times and bad times as they say. But perhaps one or other of you has encountered something similar. I hope not. But it would be helpful to know if there are any oncologists who are dealing with such autoimmune disorders as this particular one arising from immunology. I can't find a trace of any connection between lupus and nivo or pembro in my googling nor does my veteran in the field oncologist have any experience firsthand or otherwise.

My best to you all. The diagnosis has not been made, so maybe this will turn out to be less problematic than it seems to me now. I hope so.

Frank
buffcody
 
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Re: New Developments;No Diagnosis

Postby Catherine Poole » Tue Oct 10, 2017 7:25 am

Frank,
I was remembering that you saw someone at SLoan for another opinion. Do you feel up to traveling there again? They have had probably the most experience with immunotherapies.
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
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Re: New Developments;No Diagnosis

Postby buffcody » Tue Oct 17, 2017 3:13 am

Catherine,

Good suggestion on Sloane Kettering. If I don't make any progress in my appointments in the next 10 days, I will call out there and get on the list to be seen. Still no diagnosis and no improvement. Frank
buffcody
 
Posts: 257
Joined: Mon Jun 25, 2012 8:12 pm

Re: New Developments;No Diagnosis

Postby Catherine Poole » Tue Oct 17, 2017 10:03 am

My opinion is you call NOW. It takes a while to get in and you can always cancel.
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
Posts: 10782
Joined: Wed Jan 02, 2008 12:09 am


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