It has been a while since my last update. Overall, things are going well. I feel better than ever, other than my knees. Time for another hyaluronic acid injection to lubricate the knees. I am going to try Durolane this time. It is a single injection instead of a series of three.
In other news, I had to have a growth removed from my left cheek on 11/14. It grew very suddenly about starting a week prior. There was a small discoloration spot that had been there for several years. Given NF1, JAK2, and past hydroxyurea use, I did not ignore it. Assessment is that it could be something benign or not. Histology will be back in a week or two. I am not particularly worried about it.
In the MPN news, it is time for either a Besremi dose increase or a phlebotomy. This is the conversation I am having with my MPN care team.
HCT on 11/13 = 45.3%. HGB = 14.8. To be expected with iron levels increasing. No rush, but time to consider either a phlebotomy or a Besremi dose increase.
LFTs are just a bit high. AST = 48. ALT = 68. Not concerned with LFTs at this level.
Lymph level low but stable = 0.66. Neut = 1.23. Has been cycling up to 2.93 on the current Besremi dose. Do want to monitor Neut > 1.00.
I am inclined to increase the Besremi dose. Would prefer trying a small dose increase from 150mcg to 175mcg and monitor response. Next two doses would be 11/22 and 12/06. We have a lab scheduled for JAK2 Quantitative Analysis on 12/15. Could recheck CBC/CMP on that date. Can bump dose to 200mcg if needed/tolerated.
I am seeking input from both of my hematologists. We will make a decision together. I am a proponent of the low and slow approach to Besremi dose titration. My care team has concurred with this approach thus far. I feel much better with my iron levels higher, so I am hoping that the Besremi dose increase will be both effective and tolerable. I am not taking anything for granted, however.
I am rather excited to see what my allele burden is now. Last year, the VAF had reduced from 38% to 9%. I am hoping to see it even lower this year.
Wishing all of you success on your MPN journey.
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hunter5582
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It depends on how low it goes and how my blood cell levels are doing. Ultimately the plan would be to back off on the Besremi dosing. We still do not know the full significance of a complete molecular remission. is it the same as a remission of the PV? That is something we all want to know. It is being studied.
Sorry to hear about the growth removal ,I looking forward to you posting the all clear!!Interested to here your next Allele burden results fingers crossed for a lower %
Thank you for the update. People like us who are for various doctor insistence’s stuck on HU , are following your updates carefully . Hopefully the medics on our care team will buy into a switch to besremi eventually .
The main argument in my case being that HU is time tested and being tolerated well …… on 500 gms HU currently , with 3 mg oral steroid dose and monthly Actemra injection for the accompanying GCA .
Thanks so much for your report ! Very helpful and you always sound so positive. Greatly encouraging and reassuring for all of us on this yaatra. I’ve learned this is the Hindi word for journey and I like the sound of it.
I hope all goes really well for you. You do a fantastic job on this site helping us with our problems. I always like to hear your sensible positive thoughts. Thank you Irene
So good to hear things are going well for you and you're feeling well. Thank you for encouraging myself and others to have a better understanding of the condition and to ask more questions in our consultations.
I think you are clearly demonstrating that a good understanding of our conditions and being our own advocate is so beneficial in our disease management. In nearly 30 years of MPN I have come across doctors who feel “challenged” by a patient who stands up for themselves and others who welcome the cooperative approach. An MPN specialist is SO important in the management of our conditions even if as in my case the specialist oversees our treatment plan which is carried out and monitored by a local haematologist- preferably one who also has a particular interest in MPNs
So glad to hear you are doing well. Your input on this site is invaluable with your knowledge and clarity of thought and is very much appreciated by the rest of us. Thank you for your willingness to share your knowledge here
As an aside I was getting ready for the party to celebrate my Hgb getting to 120 when it resorted to normal behaviour and dropped to 106 in five days! Party hats back in the cupboard for now but not in the bin!!!
It sounds like we approach our MPN care the same way. I have simple philosophy about who is allowed on my care team. Doctors who welcome collaboration and respect the patient are on the team. Doctors who feel challenged by my asserting the right to make treatment decision are off the team , immediately.
Keep the party hats ready! Let us all know when we can celebrate for you.
Hunter, you are so ready to help all of us with your hard won knowledge and wisdom. So it is a joy for all if things improve for you. Thank you for your great generosity of spirit. I always learn so much from your posts and answers. May God Bless you and keep you safe and well.
I am on the slow approach going up every 6-8 weeks only if needed. I also make sure if I get labs. I get them early in the week after my shot, in the afternoon after being hydrated. Last time I was at 45 exactly we increased and waited and it went down 2 points. But I made sure of when I did my labs. I maybe crazy but it seemed to help and made sense not to go on the day that my shot was due like I did the last time. Will see if my theory has any merit in 2 weeks. I am at 225mcg and feel great. But MDA doctor said she sees me at 250mcg likely then 300mcg when I do once a month. I think she is right but doing as low and slow as safely possible. Keep me posted on the skin lesion! Hopefully just a SK! Will keep you in my prayers! You have helped all of us sooo much.
CBC Looks pretty good Hunter , ferritin staying low and MCV lowish, I always wonder why that is with the interferons if no or minimal venisecting, many on interferons report ferritin staying low. My ferritin on Rux is around 60 which is okay but doesn’t seem to go above that MCV around 84. Sorry to hear re growth removal, catch them early is the trick of course.
So glad to hear from you. Glad you had growth removed quickly. Nice to see you have been doing well. I continue to learn so much from you, and appreciate your time and informative responses to our community. Happiest Holidays, Christy
Hunter, thanks for the update, and congratulations on what look like generally good results.
My latest results came this morning: WBC 17.22 (high, but lower than it's been this year), RBC 3.99, HGN 12.2, HCT 37.4, PLT 383. These results are relatively consistent with what I've been seeing on 10 mg/day of Jakafi. On a more detailed level I noted Lymph 1.69 and Neut 14.37. Should I be concerned about these two numbers? I should add that I've been feeling very well.
I will have a televisit Monday with a CRNP from Hematology/Oncology at UPenn's Abramson Cancer Center. Note that both of my hematologists have now moved my visits to nurse practitioners ; my first guess would be that they consider my condition to be stable and under control. On another matter, is it standard practice to look at allele fraction in PV? If so, how often? I've only had this done once, back when I was first diagnosed in 2015. Back then, it was very expensive, and it took quite a bit of effort to get the charge down to $500.
Hope all goes well with your knees and you get good results re the growth. I’m sure everyone will be wishing you well as you are such a great help to us all on this site. All best wishes
What a great upbeat update, so good to hear you are really well and doing fine. As for the knees, just wish it was as easy to get them done here, mine are desparate!! You have to jump through every available hoop here in UK it seems to get a steroid injection . Hope all goes well.
The hyaluronic acid injections are way better than steroid injections for osteoarthritis. More effective and lower risk in the long term. If you have to fight for care, then fight for the best. Your orthopedist can best explain whether that is a viable option for you.
Thank you Hunter. I have an appointment next week dealing with my hip at present, so will raise it with him then. In the meantime I will also look into it. Many thanks.
Great to read your stats are stable and particularly your excellent communications with your medical team. I hope your allele burdenn is further down too and I would be interested to learn what the benefits if this is. On my way to the Mpn conference in London!
Hunter thank you so much for your clear and understandable posts about your own journey and in answer to queries from us all. I am glad that things are ok with you and that you are feeling better. I wish you well for the future.
So pleased to hear that you are feeling so well and have your two Specialist doctors working so well with you . Your advice and knowledge are so much appreciated on this site and we all wish you well. Regards Fran.
Thanks for the update Hunter. I will be interested in your dose selection.
I am at the other end in that I have been on 500ug Besremi for 10 mts which controlled my HCT at 43-44 but my platelets dropped to 86. With a one month break in Besremi platelets back to 266. I have asked my oncologist what dose she wants me to restart on Besremi as would like to minimize what I think are its side effects - facial flushing, headaches and chronic non productive cough.
My MPN Specialist concurred with upping the Besremi dose to 175mcg. We will see how it goes.
I sounds like a bit of overshooting the mark with the platelets. That can happen since Beremi is affecting all three blood cell types. It can be tricky to figure out what is the medication vs what is the PV when symptoms overlap. I would note that a new or worsening cough is on the "call the doctor right away" list. everydayhealth.com/drugs/be...
I think you plan to restart the Besremi at a lower dose makes good sense. Adverse effects are dose dependant. I favor the low-and-slow approach to Besremi dosing. I am near the maximum dose I can tolerate based on the leukopenia I already experience. I will proceed cautiously.
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