Good (Maybe Great) News for a Change

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.

Good (Maybe Great) News for a Change

Postby buffcody » Sun Feb 11, 2018 3:50 pm

Those who follow the Stage 4 Forum may recall my posting starting about 6 months ago about a strange and debilitating handful of symptoms that I was looking for guidance on relieving. I thought they might have been an indication of a hitherto unknown immune response to Nivo or Ipi and Nivo, both of which therapies I had had. I had a good number of relatively serious immune responses before, so it would not have been a surprise if this was another. It consisted of problems with balance, pressure in the head, walking any distance beyond a block or so (not around just one side), and stairs had become just about impossible.

The good news is, despite the fact that a number of specialists including my esteemed oncologist, who, in fact, has co authored an important article on side effects of immunotherapy could not figure out what the problem was or what was causing it, and it was most discouraging, not letting it go at that has led to a very different, hopeful, and even pleasant place in my life. I decided that I had run out of useful specialists to see. So I would have to solve the problem, if it was going to be solved, myself.

I was most fortunate as I analyzed the data I had on my body from myriad tests through my almost 6 years of cancer treatment that the CBC tests had indicated an irregularity that had been consistent through the testing of both my PCP and my oncologist. I can sum it up simply and summarily as low red blood cell indicators that spelled anemia. The medical assumption was that my current cancer or previous one 10 years before had caused the disorder and that there was nothing to be done about, I guess.

I never remembered having an iron test from any doctor before. As it turned out one had never been done. So my PCP ordered one at my request. The level proved to be 1/3 of the low normal on the lab charts, and I began to take what ended up being 195 mg.of elemental iron daily. About the same time, I somewhat reluctantly because I felt so weak, began an in-home physical therapy program with a therapist twice a week. I also, since I had felt some of the problems had followed on a couple of severe sinus infections during the late summer, set up a program of nasal spray and neti pot sessions along with multiple humidifiers which are needed in my home to bring the winter humidity up to close to liveable levels.

I'm betting that the good news, which, by the bye, is my coming back to near normal in every way, is mainly the result of the iron deficiency being corrected, but I would not sell the PT or sinus treatment short either. It's pleasant not only feeling so much better but having people tell me how well I look. I did not enjoy that when I was feeling like s**t. But now it coincides with my views of things and the reality that I really am doing and feeling well.

Moral of the story. One that many of you already practice. Not only question everything but do your own research. It is, after all, we who are most interested in our condition (our loved ones, of course, too). And in some ways, despite our lack of professional education and training, we are probably more familiar with the data on our bodies, or at least can be. This is not the first time I have discovered something that for some reason or the other the doctor missed and has been critical to my progress. I'm not upset at my docs. I'm just glad that our "team" seems to have won the current contest.

Frank
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Re: Good (Maybe Great) News for a Change

Postby Catherine Poole » Wed Feb 14, 2018 8:18 am

Frank, as always I admire your tenacity and stamina. You are definitely admirable!
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Good (Maybe Great) News for a Change

Postby dkmc » Sun Feb 25, 2018 6:58 pm

That is good news! As most of us have found out- you have to be your own best advocate. Great detective work. Hope you continue to feel stronger. Karen
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Re: Good (Maybe Great) News for a Change

Postby MathewR » Mon Mar 05, 2018 12:05 pm

Frank, thanks for a sharing. A great story on several levels--especially being your own best advocate. I am also a true believer in the daily saline nasal rinse (in my case, with Bactraban, an antibiotic ointment). I started when I had a sinus infection as a nivo side effect and have continued ever since. I hardly go a day without it.
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Re: Good (Maybe Great) News for a Change

Postby Catherine Poole » Wed Apr 18, 2018 9:39 am

Frank: How is it going?
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Melanoma International Foundation
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Re: Good (Maybe Great) News for a Change

Postby buffcody » Sun Apr 22, 2018 6:34 pm

Thanks for asking, Catherine. Two years ago I was with you on the big day for melanoma in PA. Since posting back in February, most things have continued to head in the right direction. Generally feeling better and able to do things that were impossible to do just 3 months ago. I did, however, have a detour with gallbladder removal surgery that, unfortunately, could not be done laparoscopically but had to be open because of one or other stricture. Then after being released on the fourth day after surgery, I was back in for 4 more with a surgically caused infection that had me in for another 8. I have been out of the hospital a little more than a month now and got an all-clear and dressing/bandage removal from the surgeon on Friday. Also on Friday a report on another clean PET and the previous week a good brain MRI report. So still NED, now for almost 11 months. I still have the biliary tube in, now for almost 2 years, which still makes immersion in water a no-no so swimming is still out. I'm seeing a new surgeon about other possibilities such as a stent to get around that stricture, but only hopes right now. I mostly feel quite energetic and mentally focused and very hopeful about the future. Unbelievably I don't have a doctor's appointment or a test for two weeks. That must be a record over the past 6 years. Hope it was a great day at Safe from the Sun and its record 15 years!! Frank
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Re: Good (Maybe Great) News for a Change

Postby jeffb » Mon Apr 23, 2018 10:49 am

A rough ride but I'm really glad to see you on the mend Frank.

Jeff
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Re: Good (Maybe Great) News for a Change

Postby TomL » Sun Jun 10, 2018 2:16 pm

Thank you Frank for your sharing. I was diagnosed with stage 4 multiple lesions below skin and in lungs in Feb. 2017. The response to my opdivo tx was immediate with the shrinking and disappearance of lesions throughout.. After 25 infusions and 18 months later, I have now had a clean PET scan and a clean nuclear cat scan. I do, however suffer with a fairly severe whole body rash with also the nail bed of hands and feet being attacked with lichen planus. Ointments alone don't touch it. My dermatologist has put me on 60mg.s/day of prednisone along with 3 different kinds of antihistamines. I am titering down the steroids so that I am now @20 mgs/day and have improved drastically. The goal is to get off The steroids completely and eventually get back on the opdivo. I have recently also had some dizziness, sometimes with nausea, that is complicating this..After looking at my bloodwork, the lab states that they noted slight chromoplasia (increased immature red blood cells being released by my (bone marrow). Your suggestion of taking some elemental iron makes total sense! I'll discuss it with my Dr. Thank you again!
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Re: Good (Maybe Great) News for a Change

Postby buffcody » Sun Jun 10, 2018 2:36 pm

TomL,

Glad to read your good news about your new NED status. Hallelujah! Mine has continued too. Now more than a year with regular PETs and MRIs to affirm it.

I'm sorry to hear, though, about the other maladies you are dealing with. I never had the extreme skin issues you have. Mine seemed to be bad enough with itching over a majority of my skin. Sometimes it would show up as a rash, sometimes itching without a rash. I was pretty sure as I thought my oncologist was too that the itching was a side effect of Nivo. However, the further I got away from the Nivo, the less sure he was since it continued for some months. The theory then was that it had to do with gall bladder issues or the biliary tube in general. I was also taking a pharmacopia of drugs to alleviate some of the itching as well as twice weekly light therapy. There was some improvement but not overwhelming.

Then, I had my gall bladder removed. Because of stones not itching. BUT. All the itching stopped. For good? I hoped so. The freedom lasted about 2 months. And now...... Back to itching, steroid cream, eczema lotion. Not as bad as before. But the gall bladder must not have been the whole cause. Frank
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