I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets, bounce between 70,000 and now 80,000. Occasional purple bruising. So maybe the platelets are not super high quality. (Slightly enlarged spleen but still probably eat too much!) Anyway. feel good and the bottom line is stay the course and live life. So you guys are stuck with me just now
What the BMB Result Said: I met with my CLL and... - CLL Support
Sounds like a pretty good result. Very pleased for you.
Great news Andrew... gee has it been that long? 😄 I think you have a year or so on me...
I just posted a study here from Dr. Spaner at Sunnybrook in Toronto, which looked at JAK inhibition in CLL... it is in Haematologica...
It might be of interest to you...perhaps two birds with one stone...
Wishing you another 19 years plus even more of "not doing much." ☺
Glad to be stuck with you Andrew.
That's great news Andrew! Glad to hear you stable and feeling well.
Great news Andrew.
Great news Andrew. Just recently signed up to the patient power site and am learning lots. Keep well and I hope your platelets don't cause you too much trouble.
Glad to hear your great news. May they both remain gentle and sleepy forever. I assume you are now getting biopsied at UCSD. They have a world class heme lab.
Great news Andrew, and many thanks for all you do for us.
Great News Andrew
Keep up the good works in educating the world
Hi at 19 years your case must be one of the longest remission periods. Yet it also shows the limitations of current treatments. Although your disease is controlled it's not cured. Yes you are living a happy and relative healthy life it's still in the background. Until research can eliminate all trace (and research is getting there) we all live with the knowledge that anyone of us can go from watch and wait to treatment at any time. Please may you continue to out live this disease. Best wishes and good luck.
Great news! Especially nice to read by those of us who have had FCR.
Really good to read this Andrew this must come as a great relief to you and all the family, back to watch and live some
Your story and all the work you have put into helping us all gain knowledge and prepare for and live well with CLL life must now be immeasurable after 19 years, long may you, all your effort and ideas to provide us with news & information continue to blossom,
Thanks Nick and all the best to you! Off to Chicago to educate, as you have, audiences within a drug company do they better understand directly our view as patients and they work ever more aggressively for a cure.
That's great Andrew! Hope the MPN stays s l o o o o w. CLL sounds like it's nicely slumbering, or at least very groggy. That's a good thing.
Dave in Chicago
can you tell us about diet or/and supplements you are doing to stay 19 w&l (live) lol. Us newbes sure would like to follow in your medical footsteps...
I just do a balanced healthy diet and exercise daily. Nothing crazy like loads of supplements etc. A don't stress out!
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