Good news on the labs today. Since the phlebotomy on March 26 my HCT is staying below target. It actually dropped some more this time to 41.4%. LYMPH and NEUT are at acceptable levels though LYMPH is still low. PLTs are staying in the 200s. On the whole, things are looking good.
I have been feeling a slight loss of energy in recent months. Discussed with the hematologist whether it is PV, Besremi, or iron loss; the answer being "who knows." It is not enough to interfere since I can just push through it when I need to.
We will continue to monitor the A1C and glucose numbers. My last lab March 19 was the highest I have seen with A1C 5.7 and Fasting Glucose 117. I am more suspicious of weight than I am of the Besremi. I am working on the weight, but it is coming off with greater difficulty this time. Will need more self-discipline and time at the gym.
I hope you are all finding great plans for the Summer. I am attending the CTF Neurofibromatosis Conference in Belgium in June. Will also do some vacationing. I will be working at the Summer camp program for youth with medical conditions for two weeks in July. That is really a blast. I have as much fun as the kids. There is a MPN conference in Asheville NC in August I will attend. More vacationing attached to that trip too. I hope to make it to one of the MPN Voice conferences, perhaps in the Fall if I can make it work. Hope to see some of you all there.
Wishing all of you all the best and a great Summer.
Written by
hunter5582
To view profiles and participate in discussions please or .
Hi Hunter, so very happy about your good news! Your schedule for summer sounds so very exciting. I am sure you will learn and share with our group. Maybe all the travel and walking will help eliminate your unwanted pounds. Enjoy!
So glad to hear your labs are holding. I am wondering if Ozempic is an option for weight. Where do you find out about Conferences? I would like to attend some. Enjoy your European vacation!
If the prediabetes numbers do not get better, then meds like Metformin or Ozempic might be an option. I already take so much stuff that I am cautious about adding anything else.
There are several organizations that do training/conferences. you can get on mailing lists for announcements. Here are two of them.
Hi Hunter, wish my CBC looked as good as yours. Ozempic- I was put on it about two years ago and have lost over 50 lbs now. My cardiologist (have had open heart surgery) my Rheumatologist and Hematologist have all told me to stay on it. Heart patients and kidney patients benefiting on it and they are hoping it will be covered soon by more than just the diabetic patients. It’s costing me $250.00 a month in Canada.
Sounds like you have a great summer planned- enjoy.
Thanks for sharing Hunter and hope numbers hold steady.
For what it’s worth my energy levels while on besremi were down. After switching to Jakafi I can do daily work outs at the gym and do not find myself having to take a mid day nap anymore
As said by others, it's great to hear your good news. Sounds like a busy & productive summer. Its great you are feeling well enough to take full advantage of your time.
I’m glad to hear you’re doing well and that labs are looking good. It sounds like you have a busy and wonderfully productive summer coming up!
I often feel a little tired, too. I never know whether it’s the PV, Besremi, or just good old fashioned aging! I’m also able to push through and keep going, thankfully.
Hurray - that’s a good start to the weekend! And a full and productive (and hopefully with plenty of fun) summer schedule planned. Hope the energy levels pick up. I’m with you on the weight loss bit - it’s definitely harder to do than in the past and I can’t blame mine on any meds (yet!).
Good to hear from you! And your upcoming travels sound wonderful!
I understand the weight issue and the glucose rise. I experienced increased A1C and glucose on Peg. It’s a little better, now, but Rux has a negative impact on my weight loss! I have given serious thought to gastric sleeve surgery but I need to get a handle for n tachycardia issues.
The way your HCT responds to the treatment is remarkable. A stable HCT at 41% (or slightly lower) could push your haemologist to slightly reduce the Besremis’ posology in the future .
Thank you for sharing. Fabulous news about your test result improvements and stabilization. Your summer doings are perfect for combining MPN and NF 'business' with pleasure. Hoping you have plenty of opportunities to continue to learn more about these disorders and share what you already know about them to enlighten others. Happy for you being able to be so engaged. Please stay safe. Best wishes!
Not sure if it would be your thing but I have a peloton. I exercise 6 days a week. They have so many different workouts from biking (obviously) to yoga, strength training, etc. I love it! They have something for if I have 30 mins to spare or as little as 15 where I can still break a sweat. I didn’t have cholesterol problems but my doctor commented saying I lowered it even further. And it is less stressful to me than when I used to run. Just feels like less pressure. Just a thought. Have an awesome vacation!
Hi .. always like your updates … and the detailed results you have collected .. has made me think that is what I will do with all the pieces of paper I have . Hunter I must say despite the burden we all have with this .. you make it more positive and bearable with your information .. thank you for caring 🙏
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Besremi One Year Update
Updated Numbers Based on Recent Appointment
