Just did my updated labs. On the whole, I am very pleased with how things are going. The numbers look better than 4 weeks ago.
PLT now WNL at 398 – down from 477. Note they have been as high as 900s.
HCT dropped a bit to 44.0% from 44.2%.
WBC up a bit to 4.03 WNL from 3.90.
NEUT steady at 2.41. On the low side of reference range.
LYMPH up a bit to 0.89 from 0.83. Still low but moving the right direction.
BASO steady at 0.5 - WNL. Had been in mild basophilia for years.
CMP numbers all look good. Kidney and liver function are intact.
Iron 34, Iron Saturation 10, Ferritin 15. This is the best my iron levels have looked in several years. Even better, iron numbers are up with no increase in HCT.
Von Willebrand Factors – vWB-AG and vWB Activity are WNL.
I was a bit concerned about the drop in leukocytes as we need our immune system in top shape these days. Under direction from my Integrative medicine doc I continue to use Echinacea/Reishi tea and added Astralagus 1125mg/day to boost the immune system. It looks like it might actually be helping.
It appears that the 45mcg dose of Pegasys is working well for me. I am clearly benefiting and have had no adverse effects at all. The decline in WBCs had me a bit concerned, but that seems like it will be fine. I am very pleased that my iron levels are coming up and HCT is holding steady. Hopefully with a bit more time this improvement will continue.
I am planning to continue on this treatment plan and monitor every 4 weeks to see how it is going.
On another note, I am thinking that the COVID booster will be available to those of undergoing various treatments for MPNs that suppress immune response. I certainly plan to get one as soon as I can. I hope everyone who wants one will be able to access it soon.
All of the best to all of you all.
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hunter5582
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Mine are always low, but my WBC overall are high. It is the main issue I want to discuss with my hematologist next visit.
I recently caught a different respiratory virus, RSV, and have had a hard time kicking it. I'm wondering if this isn't due to my low leukocytes. On another note, I can't believe I avoided Covid all this time, just to get laid low by RSV. It really threw me for a loop how sick I've been the past week.
Leukocyte definition "a colorless cell that circulates in the blood and body fluids and is involved in counteracting foreign substances and disease; a white (blood) cell. There are several types, all amoeboid cells with a nucleus, including lymphocytes, granulocytes, monocytes, and macrophages."
If you look at your white blood cells you will see two sets of figures in addition to overall WBCs. NEUT, BASA, LYMPH etc. are expressed in both absolute numbers and percentages of total leukocytes present. Each type of leukocyte has a specific role in the immune system. MPNs can affect all of them, none of them, or only specific ones. Do be sure to get you doc to review your CBC with you and explain what the numbers actually mean.
Note: It would be expected that RSV would stimulate the production of specific types of leukocytes.
Hope you are feeling better soon. Please do let us know how you get on.
This is great news Hunter. I'm so glad to know that all the signs are looking reasonable. The main thing is that you are feeling better. Take care of your self. Best wishes, Lyn
Thanks for sharing and great news, Yes all of us will need to get the booster shot based on our condition. need to check with the MNP doctor to see how to go about doing this. Also I wonder if those who got phizer can mix with the booster of Monderna or we need to stick with Our original
Hi Hunter, So pleased you have good news. I am about to start epoietin injections. Don't know until you try, do, you? Keep doing whatever it is that works.
Thank you for sharing your good news Hunter. I have only been on here a short time, but it is apparent you are a great inspiration to others in sharing your knowledge and progress with others.
What good news! I'm glad interferon is working well for you; I've found it to be very effective as well.
One question: how do you coordinate your work with your functional md and your MPN specialist? I'm considering going to a functional doctor here (on the advice of my primary doctor) and am just starting to think about how that might work. Would appreciate any thoughts, advice, experience. Thanks! Kim
Primarily by being my own medical case manager. I make sure that all of my providers have all of the information from other providers. I insist on holistic treatment from everyone. All of my providers have patient portals. Most include the ability to post the labs and to upload labs between providers. Some even use the same system so that is not always needed.
The other thing I do is to go to every appointment with a written agenda. It includes: my Treatment Goals, Treatment Strategies, Updates/Issues/Questions, and Treatment Decisions. If you are interested to see one, send a message and I will get one to you.
Great news Hunter, very happy for you. Long may it continue. I believe that the a FDA committee approved a third dose of the mRna vaccines on Friday for immunocompromised persons. The article I read said that a Dr order is not required but you must attest that you are an immunocompromised person in one of a list of conditions. It should be readily available as there are supposedly thousands of doses that are set to expire at the end of August. I guess we should go ahead and get another dose of the same vaccine as opposed to waiting to see if a tweaked booster dose becomes available (tweaked to the delta variant).Continued success to you.
I am so very happy for you. I also take astragalus to help boost immunity and I think that it is very good. You are always so helpful with everyone and it’s so nice to have you get great news for yourself! Wishing you a fabulous day
Congrats, Hunter. It must be a great relief to have things looking up ~ esp with the ups and downs you’ve experienced. I took a chance and dropped into my neighborhood drug store (Arizona) and was able to score a booster on the spot. Gotta say, Phoenix is bad so my mask isn’t coming off anytime soon. Best ~
Can I ask where you went to get the booster? My daughter is at Grand Canyon University and has ET. She had the vaccine in February and her haematologist here in the UK suggested a booster this fall. She returns to the states in two weeks so it would be great if she could get a booster ASAP. Arizona cases are rising steeply as you say and the university have naively dropped mandatory mask wearing and social distancing which is plainly against all sense. Also unlike many universities they are not requiring vaccination in order for campus living. Many thanks. Judith
Hi Judith ~ Walgreens, which you can find on every street corner, was taking walk-in clients. They did ask for proof of immunodeficiency, but while I was waiting two gentlemen said they didn’t want to divulge their conditions (??) and they were given boosters.
Interesting huh? I think they have extra doses as there is unfortunately a significant amount of vaccine hesitancy in Arizona. I feel relieved to have it in my system.
P.S. It is a terrible shame that GCU is not requiring safety measures. I suspect that may change by the time your daughter arrives….let’s hope they get smart about it. That is a long way from home ~ is it her first year? My eldest daughter and two granddaughters have been in Germany since the kids were born. Boohoo!
Thanks for the information. My daughter is going into her senior year. She was diagnosed just before going off to the states at age 19 so rather a shock. The first haematologist said she would have to go on hydro and would not be able to go in the sun, so would have to give up her swimming scholarship in Arizona. By a chance meeting I was given a specialist in London who was far less alarmist and far more knowledgeable. She has had a lot of health up and downs over the last three years but has swum fantastically, met a wonderful partner and achieved a 4.0 - so fingers crossed. Just a huge worry with the lack of covid protocols at GCU and Arizona particularly as the state governor has just passed a law banning any law being passed requiring mandatory mask wearing. The first time I have ever hear heard of a law being passed to ban another possible law. He and the university seem to be following the ‘deny its existence and it will go away’ policy so popular in many western countries! I would have thought the last 18 months might have demonstrated the futility of that philosophy but apparently not. All students are to ‘make their own choices regarding keeping themselves safe’. Unfortunately this is not a situation where one can do that. We are all relying on our wider community to protect each other. By not mandating mask wearing and social distancing as well as vaccination in social settings one simply cannot protect oneself. It is a group effort which is needed to ensure all our safety and sadly the U.S.A. and the U.K. populations are too enshrined in the mantra, ‘individual rights’ to recognise that the rights of an individual to ignore scientific protocols directly impacts on the health and possible death of other individuals. My daughter is going to struggle to protect herself from Covid if she is wearing a mask but no one in the now full lecture hall is not doing the same. The university have also for some unknown reason and contrary to federal requirements decided international students have to attend lectures where no masks, social distancing or vaccines are required. My daughter asked to continue as last year online classes in order to protect herself but was told this was non negotiable. The cases in Arizona are at an alarming level, as are hospitalisations yet contrary to this time last last year, there will be no quarantine, no masks or social distancing and no ban on off campus social activities for any of the students. If the cases are high in Arizona now, imagine what they will be like when all the universities return in a couple of weeks time. Tens of thousands of students from all over America and the world coming together without any of the Covid precautions which were in place last semester. Already my daughter has been told she is expected to attend the ‘Grand Welcome’ in the sports arena in the first week back - 15,000 students inside, with no masks, social distancing or vaccine requirements. What is I believe called a ‘super spreader event’. Hence the need for a booster! Needless to say she will not be attend the aforementioned event.
I’m so sorry this will be a constant worry for you. Since the beginning of the pandemic the governor has been gas-lighting us regarding statistics. He was working with ASU until their data became damning for the state. It sounds like your daughter has been doing wonderfully ~ hope her senior year goes well!
My daughter is hoping to visit next spring with her German boyfriend. We also hope that by then we will be allowing international visitors. She and her girls have dual-citizenship of course, but he might not be able to travel here. I’m impressed with how in Berlin you basically can’t get into any venues, shops, etc., without an instant test. They have testing sites everywhere. Is it the same in England?
No not the same in UK unfortunately. You can get a PCR test if have symptoms from a testing centre results taking 24 hours otherwise you take a lateral flow test yourself with result in an hour. I did have to show vaccination proof to go to Wimbledon tennis but with restrictions now gone only a few music festivals are still asking for negative Covid tests. Sounds a much better idea in Berlin! May I ask if you go to the Mayo clinic in Arizona for your MPN treatment?
Thanks so much. My daughter went once to the Mayo with a name given by her London specialist. Mind you the invoice made my eyes water (and that was after the insurance)!
Great news that you are responding so well to Pegasys. I have a pet theory that those of us with low levels of inflammation (CRP) respond better to interferons, would you tick this box?
I assume too early to check your % JAK2 and LDH.
I note that the London School of Hygiene and Tropical Medicine are trialling Ashwagandha for Long Covid - 2,000 UK residents and will take 12 months.
Odd that your Lymphocytes are up when WBC down but perhaps too early to call? I assume within margins of error. Have you checked your immunoglobulins and/or done a CV-19 vaccine antibody test to make sure your B cells are working well? I have Lymphocytes around 0.5 but good immunoglobulins and reasonable CV-19 antibodies so either have very efficient lymphocytes or the result of additional lymphocytes stored in lymphs
Interesting theory. CRP and TNFa have been WNL when checked. We did an Interleukin panel. All of the proinflammatory interleukins were at the absolute tp of the reference range. So were the anti-inflammatory interleukins, except for IL-10 which was high. Indication is that inflammation is present, which I already knew based on all the inflammatory conditions I experience.
The astragalus appear to have very slightly raised WBC and LYMPH while NEUT stayed steady. Not sure the difference is all that significant, but at least it was in the desired direction.
Good idea about checking the CV-19 vaccine antibody test . I think I will see if insurance will cover it given my current situation. Have no issue with getting the booster, but do prefer to measure metrics for response to interventions.
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