I drove down to Stanford for an appointment with Dr. Coutre yesterday. I think we were both surprised that my blood numbers looked better than they have been of late. My WBC is back in the normal range.
I also was subjected to an hour-and-a-half MRI, which showed slight regression of abdominal lymph nodes, which was also a surprise, since I've not noticed any diminution in the size of those nodes.
So we both decided to stay on GS-1101 (CAL-101) for the time being. This means I'll be on the drug for another two months.
I do have a puzzling new symptom, though. I've had some vision changes, which has necessitated new glasses. I'm requiring a new prescription, which is very strange. Dr. Coutre has not heard of such a side effect, though he hadn't heard of the diarrhea problem that plagued me for months a year ago. So I will have to see what will be going on with my eyes. I did have a consult with the ophthalmologist who could find nothing wrong that would cause these vision changes. I certainly don't want to ruin my vision, but I am otherwise doing well on GS-1101, so I guess I will just plug along.
Happy Thanksgiving, all!
Case report: regression of MGUS with long-term use of curcumin!
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I wonder if these case reports will ever catch the eye of our MM
organisations, which, unfortunately, are so heavily sponsored by big
Pharma…Doubtful… 😕 ...
3 weeks ago
3 comments:
Hi. For context, I had Acute Undifferentiated Leukemia, three rounds of chemo, then radiation and a bone marrow transplant. In remission now 10 months after transplant.
I had vision changes throughout my treatment. Oddly enough, after my first round of chemo, I didn't need my reading glasses anymore! That only lasted about a month, but that's what happened.
After my transplant, which was about 6 months later, I now need a stronger reading glasses prescription, though my normal glasses have worked just fine the entire time. The step up to needing stronger reading glasses was sudden and occurred while I was still in the hospital having a terrible time building my blood system back up.
The effect on your eyes may be strange, but unusual side effects ... those just happen. We're taking strong medicines, us leukemia patients.
I posted this mainly to let you know you're not crazy. I, at least, can relate.
Hi Barry , its stew i was reading your blog some time ago when you stated how you wished you had not received FCR , do you still feel this and wound you still advise to seek alternative treatment if possible (obviously only your opinion )
Really glad you have come through some dark times late last year
Keep well
Stew . UK
You may want to check with Dr. Mohammed Farooqui at NIH to see if there is room in the ibrutinib clinical trial. When I saw him several weeks ago, he indicated that they had some openings. My blog is:
drlaverne.blogspot.com
if you are interested.
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