Update 6.7

[hunter5582]

A few items of note. CBC numbers are pretty stable from two weeks ago. HCT is OK at 45.3%. PLT is at 313. WBC is low at 2.72. I remain in lymphopenia at 0.65. I am now consistently in Neutropenia at 1.38. The MPN Specialist does not want to see the Neutrophils drop below 1.00 as that would compromise my immune system too much. It seems that 150mcg is the max dose of Besremi that I can tolerate.

Fortunately the itching I was getting has not recurred since I have been on daily Claritin. We did confirm that the incident of arthralgia I had in my knee was most likely a Besremi AE. I have also had some issues in my ankle that are not clear. The one more serious incident of arthralgia I had in my knee has not recurred. Hopefully that was a one-off occurrence.

Next Steps. Continue at 150mcg Besremi and see how it goes. The MPN Specialist is OK with HCT creeping up to between 46%-47% in preference to the Neutrophils dropping too low. If HCT creeps up, will do a phlebotomy if it gets too high. Will likely try a mini-phlebotomy first if I need to. Hopefully it will not be needed. I feel much better with my iron levels higher.

I did get a bit of good news today. Had a follow up MRI of the brain monitoring for tumor recurrence this morning. There is no sign of tumor recurrence. I have also had a lengthy period of none of the visual migraines that resulted from the brain surgery. It seems that the brain is continuing to heal.

One more spot of good news. Ijust got back from my first session of volunteering at Brainy Camp. It is a Summer camp program for kids with serious medical issues run by Children's National Hospital. It is very cool to give these youth a chance for a normal fun activity that they could otherwise never experience. I am headed down for another session in about a week. I am going to need all that iron to have the energy to keep up with the kiddos. It really is a total blast to spend time with these kids. brainycamps.com/news-events...

Hope you are all having a great Summer. All the best to everyone.

[EPguy]

Good progress. It seems your dose is to be determined by WBC counts. I suspect I may have the same limitations as others here might too, although my HCT is reasonably cooperative so far for threading that needle. Except my Dr wants to go for dose, we'll be talking about that.

Most important, you're feeling ok, that is tops on the list.

The plots are not familiar, can you describe?

Great news on the MRI. That and a crowd of Kids should keep you nice and relaxed (or at least distracted).

I just had a CAT scan for heart calcium (artery blockages) Came back all zeros, a good result. So I can keep up the grapefruits absent statins. Some things inside us are still working well.

-I was half hoping to get Rx for statins, I've read it might help INF response.

[Barbiebreath]

I’m not exactly sure how to respond to the issues you’re having but I know you and your MPN team will strive to make the best decisions. Happy to hear of all the good news you had. Volunteering at the Brainy Camp sounds wonderful.

They are lucky to have you!

[CLONDARA]

Hi that all sounds better and well done you on your volunteering. You are a truly wonderful human being and a great friend to us all.

[JP1952]

Hi Hunter,I confess to not understanding blood test results and their terminology but I get the gist of what you are saying. Thank you for keeping us up to date, it seems to be a complex journey for a lot of us. While I do not understand the medical terms I am also so pleased that you and others do understand and are kind enough to help those of us who struggle. So thank you.

However, it is excellent news that your brain surgery was a success and no more tumours.

And "Brainy Camp" sounds brilliant and great fun. Well done for doing it.

[Hopetohelp]

Great to hear you are doing well and have your plans. The kids must take a lot of energy so well done on leading normal active life. Regards knees and ankle, on peg I have had pains in joints over period of time. Started in left knee and disappeared but hopped into right knee and disappeared and then hopped presently into left hip. Wonder if it’s interferon?

[hunter5582 in reply to Hopetohelp]

According to the MPN Specialist this is pretty common with the Interferons. As long as it is transient, I plan to just suck it up and wait for it to pass when it happens. Hopefully it will not happen much. Hope you find the joint pain transient and tolerable, though no pain would be even better.

All the best.

[Hopetohelp in reply to hunter5582]

Yep quite tolerable thanks. Originally put it down to getting older so I just put up with it but was surprised it does go away like nothing is wrong thank goodness.

[hunter5582 in reply to Hopetohelp]

I am going with the "weak organ" theory. i do also have osteoarthritis, particularly in the knees. If the arthralgia is going to happen, it will most likely be there. I will just put on my "Suck It Up Buttercup" patch and soldier on. Beats the heck out of the alternative.

Stay well and pain free.

[Bobadog in reply to hunter5582]

Hi Hunter,It’s great news to hear that you are managing the summer camp,all things considered..

Your term ‘suck it up buttercup’ is brilliant ,and an inspiration to us all.If we over analyse all our PV related symptoms ,that can be tolerated ,there would be no time for any quality life or fun(!)at all.

Thanks for the update and I hope you enjoy the summer,

Bobbie

[Hopetohelp in reply to hunter5582]

😂😅

[Paul123456]

I also have overly suppressed whites - WBC 1.85, Neuts 1.15 and Lymphocytes 0.45. This correlates with very low T and B cells yet I have good Immunoglobulins and have had a good CV-19 antibody response. I assume you have checked these?

My hem wants to keep Neuts above 1.5 as a treatment objective but agrees mustn’t go below 1.

My understanding is that a low lymphocyte count can be supplemented by lymphocytes in the lymphs and hence a low blood reading may not be that bad?

Regarding the dreaded itching (electric needles in my case) I’ve found it correlated with my RBC. At > 6 it was unpleasant, now that my RBC c. 4.5 it’s hardly noticeable.

[hunter5582 in reply to Paul123456]

The MPN Specialist is concerned that the Neuts not go below 1.00. He is not as worried about the Lymph number. My regular hematologist recommends no lower than 0.50 for Lymph. My docs all said there was no point in checking for the CV-19 antibodies. Based on my response to the third vaccine I was certain to have them. Now with having had COVID back in January, monoclonal antibody treatment, and a fourth COVID vaccine injection - I am certain to be loaded with antibodies.

Sorry to hear you had the PV-related itching. Glad it is under control. The itching I experience is a Besremi adverse effect. Fortunately it is well controlled with Claritin.

All the best.

[Bobadog in reply to hunter5582]

Sorry Hunter…me again.I’m 7th day Covid,and now back in UK.

They have booked the monoclonal antibody infusion today,as it is only suitable for up to 7 days.

I am reticent to have this,due to the side effects,and I am now recovering.

Also I read that it can inhibit immune resistance to further Covid infections?

Bobbie

[hunter5582 in reply to Bobadog]

I did the monoclonal antibody treatment without any side effects at all. Some do though. They warned me that it could trigger an upsurge in COVID symptoms. That did not happen for me. there are different types of monoclonal antibodies. I did the Bamianivimab/Etesevimab combo. I did read about various side effects but did not see any concern anything about inhibiting further immune response.

It is a judgement call on whether you should do it at this point since you are already recovering. It is about your treatment goals and risk tolerance. Not a black and white decisions, just what you prefer.

Hope you are feeling better soon.

[Bobadog in reply to hunter5582]

Many thanks Hunter for the re assurance.I decided against having the anti viral infusion,as I’m now steadily recovering .

I could only book in on Day 7,as I was away,which is on the cusp of any benefit..

There are plenty of folk here in UK ,who are early days with their infection ,and will need it more than myself.

This treatment is on the NHS here,and is in huge demand at the moment .

Thanks again,

Bobbie

(Looking forward to swimming again soon 🤞)

[hunter5582 in reply to Bobadog]

Sounds like a good plan. I would note that the MPN Clinic did not regard PV status as making monoclonal antibody treatment essential. I only qualified based on age > 65. The reason i did it was that I had been taking care of my Mother in the hospital (where we both contracted COVID). I felt the need o ensure that I had the best possible full recovery before going back to take care of her. Otherwise, i would not have bothered with it either.

Hope you feel better soon and are back to swimming ASAP.

[Bobadog in reply to hunter5582]

Thankyou HunterI had wondered about the ‘PV issue ‘ with anti virals.

I Completely understand that you needed it to care for your mother,and perhaps for your other health issues too,

Take care

Bobbie

[hunter5582]

The plots are graphic representations of blood cell morphology. I do not pay much attention to them. Now I am curious. I will ask about it at the next appointment.

[Peetzil]

So great to hear positive updates on progress here. Great news Hunter & the summer camp sounds like a hoot! All the best, Lynn 🙂

[gilded]

Good news Hunter and thanks for sharing. Am going to be slumped on the sofa cuddling a bottle of red vino and goggling at Wimbledon tennis until the finals. Thinking of you at kids summer camp.

[Flynn2107]

Does low lymphocyte count worry you?? I am on PEG 45mcg per week and my lymphocytes are at 0.6 also. I may need to lower my dose to let my count recover above .8 to feel safe from viral exposure. Thanks for all your posting on this forum, its very helpful to me.

[hunter5582]

The MPN Specialist is not particularly concerned about the low Lymph. My regular hematologist does not want that number to go below 0.50. I am going with the 0.50 cutoff to monitor Lymph. The thought is that providing we are above 0.50 our body will be able to mount an immune response to a viral infection. I have been showing lymphopenia for about a year now and have not had any uptick in infections. I weathered COVID without any particular issue. I am OK with where I am now, but do not want it to go any lower. It appears that 150mcg is my max dose of Besremi.

All the best.

[Mostew]

Thanks for your latest positive news Hunter . Long may it continue. .I remember you did that camp last year. Its good to support kids . I'm doing a three day adventure trip for special needs children in Aug.

1

[hunter5582 in reply to Mostew]

That is great that you are doing the adventure trip with the kids. It is great for the kids and for us too. I really get a lot out of seeing kids who would otherwise never have this experience just be kids having fun like everyone else.

[Mostew in reply to hunter5582]

Yes . It's great for everyone. Certainly keeps me inspired and grateful I can support others..

[Meatloaf9]

HI Hunter, looks to my non hematologist eyes that you are doing pretty well. I know you are keeping a close eye on what is going on.Glad to see that the MRI found no evidence of recurrent disease.

I think it is great what you are doing to help those kids, the high you get from doing that is probably boosting your immune system and overall health.

Please keep the updates coming.

Best to you.