CBC results from today show a sustained response from the venesection I had done on March 26. HCT = 43.3% LYMPH=1.17 and NEUT=0.59 are still a bit low but in the acceptable range. It seems that my best plan is top stay at 175mcg Besremi with a venesection about every 12 months. Hopefully, the length of time between venesections will get longer or become unneeded.
Most importantly, I am feeling good. Quality of life is a primary treatment goal. I am fortunate to be back to traveling for work and fun. I am back recently from trips to Tucson and San Antonio. Leaving next week for Tulsa. I am also planning a trip to Belgium for a conference in June. Working on plans to do a bit of vacationing while in Europe as well.
Wishing all of you all the best.
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hunter5582
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That is excellent news, Hunter - thanks for the uplifting update. Also thanks for all the help and advice which you give on Health Unlocked it is so valuable to so many people. Wishing you happy travels, Lisa
Firstly, thanks for all the important info and advice you share with everyone on this site. Very glad to see Besremi continues to work well for you. I too, am on Besremi, at a lower dose than you. I hope it continues to work for me. I noticed that your WBC is low. Is that a result of recent venesection or other reason? My WBC has just begun to reach normal parameters and I am on only 75mcg of Besremi. Curious, do you have a CBC done biweekly or monthly? Right now I have a CBC and metabolic panel done biweekly.
The leukopenia is a side effect from the Besremi. It is the limiting factor on my dosing as my NEUT and LYMPH are both low. We set the cutoff at NEUT>1.00 and LYM{H>0.50. While my current numbers are below reference range, they are still high enough for my immune system to react to an infection.
When we were in dose titration mode, we did CBC every 2 weeks. CMPs were at least monthly. We also did periodic iron panels. We did increase the CMPs when my LFTs were 3X upper limit of normal. Fortunately, my Integrative medicine doc recommended milk thistle extract which returned the LFTs to an acceptable level. Once things stabilized, we backed off to a schedule of labs every 8 weeks. We will likely stay on the schedule for a while longer then back off some more.
That is great news! Glad to hear you are back to traveling! I have been traveling like crazy the last few years and don’t plan to stop! We actually made a stop in Belgium on our trip over Christmas. Had to bring back chocolate covered cherries for my dear friend who loves them from there, but they are dangerous as they are filled with booze😆. We are going back to Europe this summer. Places down the Danube. We have been traveling as a family since my daughter got a little older. Us and my parents all together! Live it up! So happy for you!!!! Praying it continues for both of us!!!
I want to stay at the highest dose I can tolerate to avoid the need for venesections. The iron deficiency symptoms caused by the frequent venesections were worse than the PV symptoms. I will back off the dose if my WBCs get too low. We set limits on what is considered acceptable, NEUT>1.00 and LYMPH>0.50. While some of the WBCs are low, my immune system can still respond adequately to an infection.
Great news you’re doing so well and looking forward to trips and vacations. I too thank you for all your advice and input to this great forum. Regards, Fran.
Hi Hunter,Delighted that things are looking good for you and you are feeling good and able to travel and get to enjoy things.Your contributions on this forum and invaluable and you make time to reply to everyone on here so enjoy your trips and fingers crossed that you stay stable.
Great results Hunter! Your platelets are really low which have been a problem for me with the Jakafi. They are still in the 500's but haven't had to have a venesection in a couple of years. Enjoy your travels!!!
My platelets were the first thing to respond to the IFNs. After cycling from the 500s to 700s for decades, they dropped into normal limits and stayed there ever since. I wish the WBCs were not quite as reactive to the IFNs and the RBCs were more reactive though. Still, no complaints. I am doing well on low-dose Besremi and feel better than ever.
Sounds like your QoL is at the top so that is very important and what matters! When and if the Jakafi stops working for me. I will definitely consider Besremi. When I mentioned it to my oncologist a few months ago, he said Besremi had more side effects than the Jakafi. Keep traveling and enjoying life!!
That's great news Hunter. Are you doing anything or taking any supplements to boast your Neutrophils? I'm 12 weeks into taking Pegasus and mine have dropped dramatically. Being moved to 45 every other week but was wondering if taking vitamins or anything could help.
I am taking an immune boosting supplement that contains astragalus and reishi. I am not sure it does any good, but at worst I am just wasting my money.
Hello Hunter. That’s excellent news! Congrats! Your posts are always awe inspiring. Thank you! I didn’t realize that you, too, are based in USA Prefer to private message you, as I’m private person, but couldn’t figure out how (also electronically challenged!). Please reply by PM if you’re comfortable doing so.
I’ve been w/o an oncologist since Nov last year. He suffers from leukemia, is elderly & retiring (I’m no spring chicken, but he is late in life). I’ve had zero luck EVER finding true MPN specialist in TX or OK. Would greatly appreciate you sharing your MPN specialist name & any other specialist’s names, you see for treatment. I have ET & my platelets have been hovering around 1 mill since receiving large number of vaccines & boosters in 2021. I am not against vaccines. Just think my PCP overloaded my body in attempt to keep me well.
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