The news is generally looking pretty good. The last CBC on 07/05 shows HCT back down to 44.3% - at target. Seems like 150mcg Besremi is the right dose for now. NEUT back up a bit to 1.83 - WNL. LYMPH still low at 0.57. The only issue is that a couple of the liver enzymes are not slightly high. ALT=60.0 AST=53.0. Planning to just carry on and be kind to my liver. We will repeat CBC/CMP about 4 weeks out. If some of the numbers are not looking good, we will back the Besremi down to 125mcg. If the HCT creeps up too much even at 150mcg, then I will do a phlebotomy. Likely will try a mini-phlebotomy to see if it works.
I met with the new MPN Specialist at Johns Hopkins, Dr. Jain. Very pleased to find a MPN knowledgeable doc who listens to patients and works collaboratively to create a care plan. Turns out she trained with Ruben Mesa and shares some of my interests in molecular biology and the role of inflammation in MPNs. I signed up for a research project she is starting regarding inflammation and the microbiome.
So on the whole, things look pretty good. The rest of the Summer will be very busy. I have a mixed business/pleasure trip to Little Rock Arkansas later this week. Later in August, I am off to Czechia to attend a wedding and then on to a 12-day Mediterranean cruise. I am really looking forward to the trips. I hope to get over to the UK someday to attend one of the MPN Voice forums. That would be another great trip to make!
All the best to all of you all.
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hunter5582
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I’m glad you’re doing ok. You have so much fun to look forward to. Hope you have a great time at all of your destinations!
Wow things are looking up for you Hunter and the numbers look great. Swings and roundabouts as we say, lovley times ahead now enjoy everything and take care. Gentle pointing travel anywhere these days is more of a challenge.🙌 Best to you.
My new doc is Dr. Tania Jain. hopkinsmedicine.org/profile... is working with Dr. Linda Resar on the research. Dr Resar is one of the few experts on pediatric MPNs.
We will be nearing 100°F / 38°C over the next couple of days. Here in West Virginia, the humidity will be quite high too. The humiture will be 100°F+. Thank goodness for AC and fans!
We just hit 40 but today it's been cooler. Believe storms are on their way but we don't want flooding because the ground is so dry. Yes thank goodness for AC.
This is good news, so pleased for you, it certainly appears going on to Besremi was a positive for you.Also well done on the research project. I am also very interested in how inflammation plays a part in our diseases. Please keep us up to date on that.
I will be interested in what more there is to be learned about inflammation too. Issues related to systemic inflammation are the most bothersome part of how my PV presents.
just in case you have not seen these. here are a few links to information on inflammation in MPNs.
Thank you Hunter. Just very quickly read the first one and didn't understand much but gleaned a few things. Am now going to check my earlier blood test results for correlation. I am so glad for this information because I sometimes think my symptoms are all in my mind. I feel it is only people on this site understand and I can't talk about things to anybody else because they just respond by saying that they feel the same due to age etc.
Hi Hunter, thanks for sharing your great report! You look like you have a very exciting summer ahead of you! Good for you ! As for me, my numbers are still not stable, I am up to 400 mcg of Besremi and still doing 4 hydroxyurea a day and this is six months in to it. According to my mpn specialist at Sloan this is ok. My platelets are finally lower but not enough. (June, 600-700, went back to 800’s this month )but better than 1.3 million a few months ago.
That is a lot of meds to be on. Hope you are tolerating it OK. Hopefully the Besremi will do the job in the long run. It can take some time. Meanwhile, there is some change in thinking about platelet levels. It may be that the delta (degree of change) is more important than an absolute number. Certainly something for us all to learn more about. The fact that you have dropped for 1.3 million to 600-800 is a large reduction. I would imagine the erythrocytosis has also decreased. That is actually the more important number with PV.
Please do let us know how you get on and what you learn. All the best.
Sounds like you have a wonderful summer planned. We have two small trips in August but it’s the first time I’m going on an airplane since before Covid. I’m a little nervous because I’ve heard hardly anybody wears a mask anymore on the airplane. Of course, I’ll be wearing my mask,
I’m glad you found a doctor that meets your needs and that things are stable.
Nice results. As we've seen some do get liver normalized with time.
Taking big trips, that is great confidence in feeling good, I hope to get there.
Seems you found the right doc, excellent...
I just got my latest on Bes, I'll post soon. It was lots of boring numbers, as we like. Exception was Lymph that is getting and trending low. (0.93) But I asked about it. Dr said there is lots of redundancy in Lymph as it's available in the lymph nodes and spleen. That is consistent with a search I did prompted by his comment.
He has lymphoma patients with 0 Lymph and they do well with infection control. By contrast he said Neut are a problem if blood count is low since there is no redundant place to get them.
You are right about being boring. Boring is good! I told my docs that my goal is to be "The World's Most Boring Patient." They all laugh at that one. One doc said "The ship has already sailed on that goal." Oh well. We all need something to strive for.
Thrilled for you in all blood aspects. The med cruise no matter where you go will be stunning. Do tell me your ports of call. Enjoy your trips and wedding to the full.
Wow lots of places I haven’t been to. Dubrovnik is stunning. Rome is fascinating. The Vatican the colosseum are fab. Unfortunately we spent ages trying to find the original Nero's palace the name eludes me near Tivoli Villas ( in the Vatican many pieces of art were brought from it and are displayed ) we missed out on the Forum which is close to the colosseum. Hope you have a few days there. The trip sounds amazing . Hope you have a fab time.
Thanks for the update and as usual you have a good plan and a busy summer ahead. Well done you! Can’t even think of going away after the heat wave we just had where temps hit 40 degrees for first time here in uk. We are just not equipped for that sort of heat over here. Talk about drink lots of water🥵😂. You are a credit to prove how mpns can lead a normal life!
It is blazing hot here too! And quite humid too. No outdoor sports for a while.
I absolutely believe in living a normal - good life. That is my primary treatment goal. Maintaining quality of life is more important to me than extending length of life. Fortunately, maintain QOL usually helps with length too.
What good news Hunter! Thanks for all this info and all your fun news too!
Yes! A doctor who listens and cares and works with us is huge. So happy for you.
Inflammation is huge, Hunter. I try to keep my inflammation down below 0,5. Should not be over 1,0. I even had two teeth pulled, against my dentists will. They were just too “spooky” to me. One had a weird feeling at the root and the other’s color was changing slightly. Within 3 wks, my CRP went from 2,9 to 0,02!!!! Courageous decision and the right one.
I’m at a new MPN specialist in Linz, Austria in 3 weeks. I will ask her about Besremi and the possibility of starting in a study also. I can only take Anagrelid at the moment. If for some reason Anagrelid no longer works for me, I need options!
I just returned from beautiful Slovenia and Croatia last night and my blood pressure has been causing havoc in my life. At one point up to 185/110! Normal for me is 110/70. I Collapsed at the supermarket, bit of heart pain. I guess Corona is still showing it’s ugly head.
My inflammation now has probably to do with diet. I couldn’t find any organic foods on the KRK island. (Yes, that the sound some birds and crickets make!) Restaurant food is based on wheat! A horror for 3 wheat sensitives! We’re Autoimmune Paleo. Almost no pulses or veggies, except night shades. I tried cooking on my own, but was limited. My digestion went haywire! Also, my families nerves went haywire. My daughter’s determatitis returned after 4 years of remission on the Paleo! She binged and ate spaghetti and pizza every day. Junk without end! I wish we could have gone to Greece to enjoy real Greek mama meals, but She was overbooked. after 2 years Corona, the tourists stormed the country. Not even a shack, flight or ferry available since Feb.
Now I’m back in Austria, but in the country during the summer. There is only a GP here, but he’s good. Country doctors are much more flexible and can do almost anything. He’ll figure things out. Blood test tomorrow. Going shopping for my healthy foods right now.
Have a wonderful time in Czechia! I was in Znoimo in May. Enjoy the blue Mediterranean. Late August/Sept is perfect! Sun isn’t too strong and the big heat is gone.
Hopefully the hematology world will pick up on what an important role inflammation plays in MPNs and other disorders. Managing inflammation is key to MPN treatment.
You were wise to pay attention to what your body was telling you. Dental issues can cause huge problems with inflammation, the heart, and more. Glad to hear you persisted and took care of this issue.
Glad to hear you found a diet that works for you. Diet absolutely does matter. I am fortunate in that I do not have any food sensitivities, other than scallops. I pretty much follow a Mediterranean diet. Lots of flavonoids and antioxidants. I only eat whole grains aside from the occasional pastry treat. My one diet cheat is low-sodium no-nitrate bacon a few times a week. Otherwise I avoid processed foods and anything with hormones, pesticides, xenoestrogens, antibiotics, and other contaminants. I do think it helps with the inflammation and I just feel better with a healthy diet.
I will be off on my trip on August 22. Really looking forward to it.
I used to have many health problems. They are almost all gone. I’ve a new and better life, since my diagnosis.
I also have bio bacon sometimes 1/month. Unfortunately, the one in Austria has nitrite. It is cancer causing if it’s heated. Just two strips.
The doctors know what is taught to them and the curriculum is such that they’re no attention paid to any biochemistry, nutrition and worst of all, how the drugs we take deplete nutrients!! Proton pump inhibitors are horrific looking at long term effects! The pill, statins,…. Absolutely crazy.
It is amazing how little attention some medical schools pay to nutrition. It is so critical and so often ignored in some programs. I have been taking a PPI for a long time. It causes magnesium deficiency, for which I have to take a supplement. My GI-doc totally ignored this issue. It was my Integrative Med doc who picked up on it in a thorough nutritional evaluation. The Mg supplement eliminated to PM leg cramps and helps to control the visual migraines/palinopsia I got after the brain surgery.
It really is crazy when some docs just ignore nutrition. I attended a training on "The Pharmacy in Your Kitchen." and one on "The Gut-Brain" - connection between the GI system and the brain. What we put in out GI system has enormous impacts on our health.
All the best to you.
p.s. bacon is an essential food group - just in small quantities.
p.p.s cookies-cakes-candies are also important food items - also in small quantities.
My creed is to eat healthy but occasionally have a bit of food fun.
I studied the gut brain connection a lot! Hippocrates already knew. Makes me so proud to be greek! 😉
I have 2000 pages of crammed hand written notes on so many health topics, nutrition, vitamins, healing, all relevant illnesses, strategies, meditation, enzymes, essential oils, depression, autism, dementia, mitochondria, seratonin, hashimoto, Ayurveda,… it’s so fascinating. Conventional medicine is like a horse with blinders. And guess who put them on? I’ll leave that open.
I have a pizza capricciosa once every two months, but don’t eat the whole crust. 😊
By the way. End of April, I got rid of two cavitations that were diagnosed separately by 3 different doctors. One (upper left wisdom tooth) sits on the meridian of the pelvis, which is the main Center of our blood production. Since then, three blood tests including yesterday showed the lowest PLT since my diagnosis and I take a constant 4 capsules of Anagrelid daily. IF this trend continues till October/ November, I can say, I may have found a partial culprit for my illness!!! Talk about inflammation reduction! Hm… I have 3 less nasty cavitations (2 are root canals). Will get maybe one more done. the diagnosis was made with the Cavitau ultra sound system. I was at a biological dentist and he used my own plasma and Ozon, before closing the wound. 😉
O yes, apparently Covid also drags the PTL down. Mine was a month ago. Also a factor to consider.
I use a small cooler bag with a couple of the ice packs Besremi comes packed with. I do follow the PharmaEssentia guidelines and have the bag visually inspected rather than letting it go through the x-ray machine.
A very small carry on. The cheap bag I use is good for at least 8 hours. Likely 12. I am likely going to upgrade to Yeti bag for a longer trip. There are also insulin travel kits that would work.
The microbiome has a very significant role in health. It has specific impact on inflammation and immune response. It is one part of the gut-brain axis.
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Eight months: Besremi Update 
Updated numbers on Besremi...interesting
