Just did a CBC on 06/13 - now after two 150mcg Besremi doses. Good news this time.
HCT = 45.2% - down from 46.5%
PLT = 350 - stable from 355
WBC = 2.65 - down from 3.38
Neut = 1.30 - down from 1.83
Lymph = 0.69 - down from 0.75
So on the whole, things are looking pretty good. HCT moved the right direction. Unfortunately the leukopenia is also more pronounced. We will keep an eye on the WBCs. We need to ensure that Neut > 1.00 and Lymph > 0.50. Any lower than that will be considered too much immune compromise.
We did have confirmed that the arthralgia flare I had in my right knee was a Besremi adverse effect. I have also had some pain in the right foot/ankle. That is not clear whether it is an AE or just unrelated issue. Hopefully the arthralgia flare was an isolated event.
The plan for now is to continue at 150mcg and monitor every two weeks. Hopefully the HCT will stabilize at goal again and the AEs will remain acceptable. I am concerned that the leukopenia will be too severe if we up the dose again. I might opt for a mini-phlebotomy (250ml) if the HCT stays too high. Not sure it would work, but could be worth a try. I feel so much better with my iron levels higher, i would be willing to give it a go. If the WBCs come back up, I might also consider a slightly higher Besremi dose (175mcg). We will see what happens.
I am still in touch with my old MPN Specialist. He is consulting for now. I see the new MPN doc on 07/18. We will see how that works out. If not, I may be doc-shopping. Hopefully the new doc will be the proverbial bees-knees of MPN expertise. And have excellent patient rapport. And be very responsive to communication between appointments. And like working with assertive patients. And run into her at MPN forums where she is presenting/attending. Maybe a wee bit ambitious in expectations, but that is what we all deserve.
All of the best to all of you all.
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hunter5582
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It's clear the Bes is having effects. You probably said before, on Apr 22 your HCT was at a low point. Was there a known reason for that?
How did you confirm the arthralgia flare was Bes AE? Is it staying the same level? Pains are a pain, I hope you feel better.
I agree the WBC looks to be your dose driver. I expect I may see the same. My Dr has not yet given me absolute min WBC values.
I'm in my week-after increased dosing (100) and feeling ok. That is a new and good result for now. Early Monday was bad but it fixed later that day, that is unusual. I'm still doing Curcumin and NAC and feel it might be a factor.
I think a certain degree of HCT cycling is just a part of the routine variance. Similar to platelets. The Neut and Lymph levels that my docs gave me are pretty standard I think. Even with the WBCs low, your body can still mount an immune defense providing hey are not too low.
The knee pain resolved on its own after two days. I had x-rays taken at Urgent Care and follow up with my orthopedist, who did more x-rays. There were no structural issues and no acute injury. Arthritis is present, but not different. Conclusion by exclusion = arthralgia AE.
I expect the anti-inflammatory agents are helping. They certainly help me.
I agree we see a lot of short term count variations in members' posts. In my particular case while under HU or Bes any stand outs were usually a response of some sort to changes in the meds. As always, so many different experiences.
Blessings to you Hunter your post helps deter me from sitting back and settling for less rather than staying proactive in understanding my PV.Thank you Hunter your the tops.
Excellent point Hunter about your new hematologist being a medical scientist (researcher?) vs being a "physician healer". That is very important, I think. I am beginning to wonder if my mpn specialist might be more interested in academics than he is in treating patients. I think I would like a mpn specialist who's focus is on patients. Wishing you continued success with the besremi.
The best physicians combine knowledge of the science of medicine with being gifted in the art of healing. These are two different sets of knowledge, skill, and ability. Most intelligent individuals can learn the science of medicine with enough dedication and study. The art of healing is something that cannot be taught. It is an intrinsic strength in how a provider relates to the people who are his/her patients. Some people have this gift. Others do not. The gift can be fostered and developed but it cannot be simply taught that way the science of medicine can.
We are truly fortunate when we find providers who have strengths in both attributes. Not all do. I do have several providers who meet this criteria. I feel blessed to have them on my care team.
Your blood count is perfect. My haem would say no phlebotomy needed in the short term if HCT <48. Your WBC are probably gonna stay low which is not a problem as long as the HCT is stable at 150mcg.
Hi Hunter, I am pleased that you are having some success and always admire how well informed you are of all the side effects of our conditions and how positive you always remain. Have a lovely weekend. Lisa
Good to see things looking good -I hope the WBC gradually fall into line, but interesting to hear your option. What a shame to loose your haem at this time! I hope your new one can fit the bill.
Brilliant so great to read all the breakdown of results. I was Hydroxy but bad side effects for long time so now off it awaiting further suggestions . Your knowledge helps us all.Julia. Devon. UK 👍
It’s all such a balancing act. You have many good plans in action which is key and settles the mind. Thanks for the update and good luck with next results and new haemo. She may thoroughly enjoy discussing your results with you. It will be like talking to a medical colleague 😂. Sometimes it’s good to have someone take a fresh look at things but apart from medical expertise it’s also important that you can relate to each other, as I have found in the past. An understanding haematologist can be very good for the spirit
Encouraging set of numbers there👍Also may I take this opportunity to thank you for the updates regarding this & , of course, your relentless approach towards helping us fellow MPNers here, it’s much appreciated.
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Updated Numbers Based on Recent Appointment
Besremi One Year Update
