Hi Lori, Besremi did the trick on HCT and more than halved my Platelets in 6 injections; however, my liver enzymes were elevated and the doctor took me off it. (The side effects were not happy, but I would have forged on if not for the liver.) Now after more than a month off Besremi, my platelets are rising again. The clinic and Medicare, to boot, have not been able to agree on paying for Besremi, which has reached about $120,000 in cost. The clinic wanted to inject me until my dose stabilized; Medicare says patients MUST self inject. I am of course lost in the middle of this, with no written assurances that I am not "broke". My local hema/onc doc just says: people your age (65) usually just take chemo (HU), but I do not want it. I will talk to the Mayo doc I saw on zoom in December, to see what else I might do as the blood counts begin to go haywire again. I've tried some Chinese herbs for liver detox; taking some milk thistle seed tea occasionally too. Daily aspirin 'natch.
I've ordered a SUP board for summer "coping skills" and a sun protective shirt. I'll either drown or have fun, I figure. (Don't worry, I'll wear a life vest!)
Hi all, Just an update to my Besremi adventure. After a few months off Besremi, my liver enzymes returned to normal. A few months later I had bad rib pain on the liver side that urgent care might be due to liver enlargement. The oncologist thought not, and an ultrasound of the abdomen confirmed it was normal in size at least. I also had a mysterious bruise which came only after a few days of pain in my inner calf. I don't recall hitting it, etc, but the bruise was enormous. Oncologist though that perhaps I'd taken too many blood thinning supplements, but he did not seem worried. (I switched from a doctor who did not like Besremi, was very afraid of its side effects, and really pushed HU. I'm hoping that moving to someone with more familiary with PV will help.)
Right now I'm waiting for financial aid approval from the pharmaceutical manufacturer. Otherwise the drug would cost me over $3000 a month for two shots, if I understood properly; I'm on Traditional Medicare plus Plan G plus Plan D. So the saga continues. I did not love being on the drug, but it did seem to bring down the HCT nicely, and did not do badly improving Platelets too. The cancer center which mistakenly gave me the drug in-house for 6 times, thus incurring a huge bill , has told me they won't be collecting that from me.
Hi all, Just an update to my Besremi adventure. After a few months off Besremi, my liver enzymes returned to normal. A few months later I had bad rib pain on the liver side that urgent care might be due to liver enlargement. The oncologist thought not, and an ultrasound of the abdomen confirmed it was normal in size at least. I also had a mysterious bruise which came only after a few days of pain in my inner calf. I don't recall hitting it, etc, but the bruise was enormous. Oncologist though that perhaps I'd taken too many blood thinning supplements, but he did not seem worried. (I switched from a doctor who did not like Besremi, was very afraid of its side effects, and really pushed HU. I'm hoping that moving to someone with more familiary with PV will help.)
Right now I'm waiting for financial aid approval from the pharmaceutical manufacturer. Otherwise the drug would cost me over $3000 a month for two shots, if I understood properly; I'm on Traditional Medicare plus Plan G plus Plan D. So the saga continues. I did not love being on the drug, but it did seem to bring down the HCT nicely, and did not do badly improving Platelets too. The cancer center which mistakenly gave me the drug in-house for 6 times, thus incurring a huge bill , has told me they won't be collecting that from me.
Hi @treeore! Thanks for the update and I’m glad to see your liver enzymes have returned to normal after being off the Besremi. That wasn’t one of my drugs, but through my treatments for AML, my liver was what took the hits too. Amazingly, it has regenerated and numbers are keeping my doctor happy. ☺️
Wow, that drug has a hefty monthly price tag. I really don’t know much about medicare…I’m on it but there was never a question about paying for my drugs. I hope you’re able to have that straightened out with the insurance company so you can get what you need. Thinking back, I do remember one drug I was on initially where I had to speak with my insurance case manager to get approval. It was $20,000 a month and she really went to bat for me. I was able to get the drug though there was a co-pay.
How do they give you something mistakenly 6 times?? LOL. It’s a relief the cancer center is waving the charges, as they should! 😳
So, what’s next for you then? Will you be taking hydroxyurea now?
I have researched virtually all experts in the field of Polycythemia vera and most agree that Hydroxyurea is an inferior treatment to this disease which is severely lacking accurate diagnosis. Check out Dr. Jerry Spivek, Director of Hematology at John's Hopkins School of Medicine. He says, "Leave people alone!" It sounds to me as though most people are scared to death of this diagnosis and then forego proper questioning of the slow acting Polycythemia vera. Is anyone familiar with Nootropics or a more natural way of reducing CBC numbers? I will be searching. By the way, I don't wait for blood numbers from the doctor. I buy a complete blood count (CBC) from Quest Diagnostics for less than $30.00 and get it the following morning!
Good luck to all.
Keith
I have researched virtually all experts in the field of Polycythemia vera and most agree that Hydroxyurea is an inferior treatment to this disease which is severely lacking accurate diagnosis. Check out Dr. Jerry Spivek, Director of Hematology at John's Hopkins School of Medicine. He says, "Leave people alone!" It sounds to me as though most people are scared to death of this diagnosis and then forego proper questioning of the slow acting Polycythemia vera. Is anyone familiar with Nootropics or a more natural way of reducing CBC numbers? I will be searching. By the way, I don't wait for blood numbers from the doctor. I buy a complete blood count (CBC) from Quest Diagnostics for less than $30.00 and get it the following morning!
Good luck to all.
Keith
Hi Keith, When someone gets a diagnosis of a blood cancer it’s pretty natural to experience fear. Myeloproliferative blood disorders should be taken seriously because, by definition, they can proliferate. So each patient’s situation needs to be diagnosed independently and with the help and guidance of their hematologist oncologist make the right decision based on their educated diagnosis.
You’re right, with PV, not everyone requires treatment right away besides aspirin and phlebotomies. But again, it is a myeloproliferative disease which can advance. Some patients aren’t aware of how long they’ve had PV because it is discovered unexpectedly in blood work. So by the time it’s diagnosed they may require treatment right way and are not able to delay the progression. With PV only the red blood cells are proliferating. In your wife’s case you mentioned her platelets and white blood cells are off the charts. It would appear that her situation is advancing.
You’re also wondering if there is natural way to reduce CBC numbers. If this is an underlying cancerous condition where the bone marrow is defective, numbers most likely won’t change through diet or nutrition. Cancer cells will proliferate because the mechanism that can prevent this from happening has fooled the immune system.
Does your wife’s peripheral blood work show signs of blasts?
Has she had a bone marrow biopsy?
Hi Keith, When someone gets a diagnosis of a blood cancer it’s pretty natural to experience fear. Myeloproliferative blood disorders should be taken seriously because, by definition, they can proliferate. So each patient’s situation needs to be diagnosed independently and with the help and guidance of their hematologist oncologist make the right decision based on their educated diagnosis.
You’re right, with PV, not everyone requires treatment right away besides aspirin and phlebotomies. But again, it is a myeloproliferative disease which can advance. Some patients aren’t aware of how long they’ve had PV because it is discovered unexpectedly in blood work. So by the time it’s diagnosed they may require treatment right way and are not able to delay the progression. With PV only the red blood cells are proliferating. In your wife’s case you mentioned her platelets and white blood cells are off the charts. It would appear that her situation is advancing.
You’re also wondering if there is natural way to reduce CBC numbers. If this is an underlying cancerous condition where the bone marrow is defective, numbers most likely won’t change through diet or nutrition. Cancer cells will proliferate because the mechanism that can prevent this from happening has fooled the immune system.
Does your wife’s peripheral blood work show signs of blasts?
Has she had a bone marrow biopsy?
Ms. Lori, you are such a gem!
I too have had some fear and believe fear is a good thing if it motivates not stagnates. Information is power, there are a lot of different views I think to fit different situations and we are all different and have different needs and treatments. Ms. Lori has been tremendously helpful and level-headed. I'm in a not know stage of PV. We can't find the cause so far, we have checked my stomach organs, and nothing significant. I found labs from 2015 where my RBC and HT were elevated if not high. So I've had it for a few years now. I've been referred to a cardiologist now and also referred to a sleep apnea test. I understand from my doctor that sleep apnea can cause this elevation. I know I have not slept well since my cervical injuries and surgeries in 2003 and 2006. So we are still looking for the cause and again if I understand correctly, if we don't find an obvious cause then I could still have PV and my body or bones or bone marrow could just be screwy. The issue is when you don't have a clear-cut gene-supportive diagnosis or have clear-cut damages. I've got damage but it's age-related or injury-related so I don't have a clear-cut PV result at least yet.
We have tried one phlebotomy to see how I respond to it. I just had that done this past Friday.
We are all different, and this disease is different and has variations and versions, and well not all is known about it either. There isn't necessarily a finite answer or diagnosis or treatment for all. I hope everyone finds that perfect individual treatment that makes them feel better and has a good doctor and support. If I can help anyone to listen....I'm here! slow sometimes but I'm here.
Thank you Ms. Lori for all your level and supportive words and all on this site. It gives me lots of resources and a comfort.
Hello Lori.
Thank you for your response and congratulations in apparently overcoming leukemia. My Wife has not had a bone marrow biopsy nor has one been ordered. There has been no noted indication of "blasts" although the term is new to me and I will be researching.
We did get a JAK2 test which indicated positive although no Allele burden numbers were provided and our Hematologist inaccurately states that burder numbers are not relevant to Polycythemia vera. This same doctor told my Wife a year ago in July that she was going to have a stroke immediately. We did not have insurance at that time and were quoted a $2,000.00 fee for phlebotomy. When we tried to pursue phlebotomy through blood centers at a rate of $50.00 we were required to get a prescription of sorts. I spent months searching facilities and begging this Hematologist for the correct paperwork before I finally got it. That is fear inducement with no alternative imposed inhumanely by a doctor. We finally got my Wife's hematocrit down from 66 to normal, obtained good insurance and returned to this doctor who has since only recommended Hydroxyurea. Knowing that hydroxyurea actually promotes escalation to Myelofibrosis and Leukemia as well as not wanting to ingest something that if it is placed on a countertop the top must be triple washed, caused us to seek alternatives. There seem to be many people out there that are not happy or confident in their doctors. The global experience with covid, masks etc... has promoted this apprehension and big Pharma appears to be the only ones to benefit. I want my beautiful Wife to be healthy and happy but I don't want her to be subjected to the obvious lies and fear induced deceptions thus encountered. My original pursuit through this media was info on Besremi as interferons are a natural product of the body, it is a more targeted therapy and I thought it would be less invasive on her lifestyle. When reading the list of adverse effects and hearing from people who required extensive testing and monitoring, I'm not so sure. I had been considering platelet apheresis / leukopheresis as the the doctor now states that those number will cause a stroke although there is no proof of that. When I perform all the diligence required to obtain such therapy through a specialized clinic, the doctor notes indicate that I am responsible for pushing my Wife to a leukemic state. This same doctor emphatically states that no patient on hydroxyurea ever requires apheresis. I am surrounded by an industry of inaccuracy which despite their lack of knowledge, force their medications upon us and when refused, I am tantamount to a murderer. We have an appointment with a new doctor on the 22nd of August.
Thank you for your time and thoughtful response.
Keith
Editor's Note: Correction: Studies of hydroxyurea in the treatment of myeloproliferative neoplasms (MPNs) such as polycythemia vera (PV), have not shown to increase the risk of transforming the MPN to leukemia.
Reference: Leukemia secondary to myeloproliferative neoplasms https://ashpublications.org/blood/article/136/1/61/456028/Leukemia-secondary-to-myeloproliferative-neoplasms
"Although some reports previously identified hydroxyurea as an independent risk factor for post-MPN AML, subsequent studies have not substantiated these claims. As such, hydroxyurea remains an important therapeutic consideration for symptomatic, chronic-phase disease per consensus MPN treatment guidelines."
Reference: Acute Myeloid Leukemia Following Myeloproliferative Neoplasms: A Review of What We Know, What We Do Not Know, and Emerging Treatment Strategies https://www.thejh.org/index.php/jh/article/view/1042/682
"Hydroxyurea has consistently shown to have no increased risk of leukemic transformation and remains a standard treatment for myeloproliferative neoplasm (MPN) patients."
Ms. Lori, you are such a gem!
I too have had some fear and believe fear is a good thing if it motivates not stagnates. Information is power, there are a lot of different views I think to fit different situations and we are all different and have different needs and treatments. Ms. Lori has been tremendously helpful and level-headed. I'm in a not know stage of PV. We can't find the cause so far, we have checked my stomach organs, and nothing significant. I found labs from 2015 where my RBC and HT were elevated if not high. So I've had it for a few years now. I've been referred to a cardiologist now and also referred to a sleep apnea test. I understand from my doctor that sleep apnea can cause this elevation. I know I have not slept well since my cervical injuries and surgeries in 2003 and 2006. So we are still looking for the cause and again if I understand correctly, if we don't find an obvious cause then I could still have PV and my body or bones or bone marrow could just be screwy. The issue is when you don't have a clear-cut gene-supportive diagnosis or have clear-cut damages. I've got damage but it's age-related or injury-related so I don't have a clear-cut PV result at least yet.
We have tried one phlebotomy to see how I respond to it. I just had that done this past Friday.
We are all different, and this disease is different and has variations and versions, and well not all is known about it either. There isn't necessarily a finite answer or diagnosis or treatment for all. I hope everyone finds that perfect individual treatment that makes them feel better and has a good doctor and support. If I can help anyone to listen....I'm here! slow sometimes but I'm here.
Thank you Ms. Lori for all your level and supportive words and all on this site. It gives me lots of resources and a comfort.
Good morning, @chella65. Thank you for your kind words. I’m happy I can be that voice of calmness and comfort for you. I can assure you I wasn’t always this way but my experience with overcoming an aggressive form of leukemia has put life into a different perspective for me. I always feared the worst…not even knowing what that meant! I think we humans all have that fear of the unknown or some nebulous thoughts to “What if??” Oddly, after experiencing ‘my worst’ I was left with a sense of calmness and learned not to fear much of anything…ok, heights are still an issue! 😅
Our blood is incredibly complex so it can be a challenge sometimes to pinpoint what is causing a condition such as PV. Your doctor is right, there can be a correlation between sleep apnea and a high RBC and Hematocrit. If you’re not getting enough oxygen while you’re sleeping, the kidneys sense this and send a signal for more red blood cells to be produced. The cardiologist or your hematologist can also check the erythropoietin (EPO) level in your blood. It’s a hormone that your kidneys primarily produce and helps your body maintain a healthy amount of red blood cells (erythrocytes). If it’s low, that can show you’re not getting enough oxygen. They may also check your kidney function…usually there is indication of issues there with blood work.
The overnight oximetry test is super easy. It uses the little oximeter unit that you’ve most likely had when having blood work done. It checks for oxygen levels in the blood. You clip it on your finger overnight, connected to a wrist band that collects the data.
If this isn’t the issue, and if your doctor hasn’t done so already, you may likely have more blood work done to check for an acquired gene mutation such as JAK2 mutation. That is the usual culprit for myeloproliferative blood conditions. Your doctor may also suggest a bone marrow biopsy. (Sounds much worse than reality) The doctor takes a sample of the marrow and peripheral blood from the bone marrow…which is the manufacturing site of our blood…the heart of the immune system. That can give your hematologist an overall picture of the health of your marrow and its ability to produce healthy blood cells.
Our bodies are meant to heal. But sometimes things get thrown off track and then we need help to get back to functioning properly.
I’m right here for you any time. ☺️ Please let me know what you find out from your oximetry test, ok?
Good morning, Keith. I have to confess that you and I are not on the same page with our opinions of the medical community. I have the utmost respect for my teams of hematologist oncologists and bone marrow transplant team. I learned to trust the research, data, and statistics behind the treatments I was given for my AML and the transplant. These people, the chemotherapy and drugs all served to give me a second chance at life. I am in a durable remission. I am 4 years post transplant, incredibly healthy, feeling as though nothing has ever happened…and back to no drugs or medications.
I truly do understand your consideration for not wanting your wife to take chemo or anything that isn’t a natural product. I lived my entire adult life following naturopathic guidelines. But unfortunately, life threw me a curveball and I ended up with a very aggressive form of leukemia. Bloodwork showed I had acquired 3 mutations which made it very difficult to treat and the odds were definitely not in my favor. This was nothing that naturopathic means could eradicate. So out came the big guns…serious chemotherapy and a bone marrow transplant at Mayo Clinic. I was a poster child for big pharma…whom I’ve also learned to respect. Because those awful drugs, well, they are the reason I’m alive today!
I’m so sorry your wife is having to deal with a blood cancer because they can be complex. She’s tested positive for the JAK2 mutation which is the most common underlying cause for a myeloproliferative disorder. https://www.verywellhealth.com/jak2-mutation-5217909
I know you are trying to find alternative answers to spare her from having chemotherapy. Believe me…I really truly understand! But sometimes what we want is different than what is needed.
I hope that your wife’s new hematologist oncologist will help you understand that if your wife needs medication that you’ll both consider this for her sake and that you will learn to trust the education and years of experience the doctor has to offer.
The doctor may also suggest a bone marrow biopsy to get to the blood manufacture center of the body to see if your wife’s bone marrow is able to produce healthy blood products. I mentioned blasts in my previous reply. Those are immature white blood cells and are generally only found inside the marrow. If your wife’s blood work is showing any of these blasts in her peripheral blood that can be an indication for leukemia. So that would be important to find out. I know that you’re preferring to have blood run from an outside lab so you may want to mention that to them when you send the sample…to check for blasts.
I am here to be supportive and I’m genuinely concerned for you and your wife. So please don’t take anything I written to be contentious. I see that you’re earnestly researching and looking for answers for your lovely wife. No one wants to see their loved ones suffer. My husband was/is the same way. But after all was said and done, we learned to trust my doctors. They were my first line of defense against a disease that had me 9 toes and a toenail from pushing up daisies from the underside.
I’m here for you and will help answer any questions based on my education and experience throughout my blood cancer and transplant journey.
Was your wife having any symptoms that led to the discovery of her PV or was this discovered through a routine physical/blood work?
Hi @treeore! Thanks for the update and I’m glad to see your liver enzymes have returned to normal after being off the Besremi. That wasn’t one of my drugs, but through my treatments for AML, my liver was what took the hits too. Amazingly, it has regenerated and numbers are keeping my doctor happy. ☺️
Wow, that drug has a hefty monthly price tag. I really don’t know much about medicare…I’m on it but there was never a question about paying for my drugs. I hope you’re able to have that straightened out with the insurance company so you can get what you need. Thinking back, I do remember one drug I was on initially where I had to speak with my insurance case manager to get approval. It was $20,000 a month and she really went to bat for me. I was able to get the drug though there was a co-pay.
How do they give you something mistakenly 6 times?? LOL. It’s a relief the cancer center is waving the charges, as they should! 😳
So, what’s next for you then? Will you be taking hydroxyurea now?
Hi Lori, I'm waiting to hear the results of a "financial aid" application for Besremi. I guess I'll go back on it staying at a low dose for as long a duration as possible, if the cost becomes reasonable. I think the oncologist suggested 100 mcg twice a month, watching blood counts monthly. (I'd been checked every two weeks up to this point.)
Glad your liver is well. My qigong teacher says "smile to your liver and it will smile back at you."
Hi Lori, I'm waiting to hear the results of a "financial aid" application for Besremi. I guess I'll go back on it staying at a low dose for as long a duration as possible, if the cost becomes reasonable. I think the oncologist suggested 100 mcg twice a month, watching blood counts monthly. (I'd been checked every two weeks up to this point.)
Glad your liver is well. My qigong teacher says "smile to your liver and it will smile back at you."
Good morning, @treeore. I hope you’re able to catch a break with the cost of Besremi. When the insurance approval went through for one of my meds a few years back, the drug came from a specialty pharmacy. The person assigned to my case from the pharmacy mentioned that there were grants depending on income level. I didn’t meet the criteria but it was a substantial and appreciated break for anyone that was eleible. I know some of our specialty meds can come with a high price tag. So best wishes on that!
The good news, from what I’m reading, is that your leash is a little longer now from blood work? That’s a positive sign. Means your doctor is feeling comfortable enough with your blood numbers to give you a little more time between appts. When that started happening for me, I was a little nervous in the beginning but then began to realize it was a very good sign. ☺️
Is the 100 mcg dose you’ll take monthly less than what you were receiving previously? Is this more of a maintenance dosage?
I meant to ask, how did that SUP paddle board adventure/experience work turn out this summer??
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Hi all, Just an update to my Besremi adventure. After a few months off Besremi, my liver enzymes returned to normal. A few months later I had bad rib pain on the liver side that urgent care might be due to liver enlargement. The oncologist thought not, and an ultrasound of the abdomen confirmed it was normal in size at least. I also had a mysterious bruise which came only after a few days of pain in my inner calf. I don't recall hitting it, etc, but the bruise was enormous. Oncologist though that perhaps I'd taken too many blood thinning supplements, but he did not seem worried. (I switched from a doctor who did not like Besremi, was very afraid of its side effects, and really pushed HU. I'm hoping that moving to someone with more familiary with PV will help.)
Right now I'm waiting for financial aid approval from the pharmaceutical manufacturer. Otherwise the drug would cost me over $3000 a month for two shots, if I understood properly; I'm on Traditional Medicare plus Plan G plus Plan D. So the saga continues. I did not love being on the drug, but it did seem to bring down the HCT nicely, and did not do badly improving Platelets too. The cancer center which mistakenly gave me the drug in-house for 6 times, thus incurring a huge bill , has told me they won't be collecting that from me.
Hi @treeore! Thanks for the update and I’m glad to see your liver enzymes have returned to normal after being off the Besremi. That wasn’t one of my drugs, but through my treatments for AML, my liver was what took the hits too. Amazingly, it has regenerated and numbers are keeping my doctor happy. ☺️
Wow, that drug has a hefty monthly price tag. I really don’t know much about medicare…I’m on it but there was never a question about paying for my drugs. I hope you’re able to have that straightened out with the insurance company so you can get what you need. Thinking back, I do remember one drug I was on initially where I had to speak with my insurance case manager to get approval. It was $20,000 a month and she really went to bat for me. I was able to get the drug though there was a co-pay.
How do they give you something mistakenly 6 times?? LOL. It’s a relief the cancer center is waving the charges, as they should! 😳
So, what’s next for you then? Will you be taking hydroxyurea now?
I have researched virtually all experts in the field of Polycythemia vera and most agree that Hydroxyurea is an inferior treatment to this disease which is severely lacking accurate diagnosis. Check out Dr. Jerry Spivek, Director of Hematology at John's Hopkins School of Medicine. He says, "Leave people alone!" It sounds to me as though most people are scared to death of this diagnosis and then forego proper questioning of the slow acting Polycythemia vera. Is anyone familiar with Nootropics or a more natural way of reducing CBC numbers? I will be searching. By the way, I don't wait for blood numbers from the doctor. I buy a complete blood count (CBC) from Quest Diagnostics for less than $30.00 and get it the following morning!
Good luck to all.
Keith
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4 ReactionsHi Keith, When someone gets a diagnosis of a blood cancer it’s pretty natural to experience fear. Myeloproliferative blood disorders should be taken seriously because, by definition, they can proliferate. So each patient’s situation needs to be diagnosed independently and with the help and guidance of their hematologist oncologist make the right decision based on their educated diagnosis.
You’re right, with PV, not everyone requires treatment right away besides aspirin and phlebotomies. But again, it is a myeloproliferative disease which can advance. Some patients aren’t aware of how long they’ve had PV because it is discovered unexpectedly in blood work. So by the time it’s diagnosed they may require treatment right way and are not able to delay the progression. With PV only the red blood cells are proliferating. In your wife’s case you mentioned her platelets and white blood cells are off the charts. It would appear that her situation is advancing.
You’re also wondering if there is natural way to reduce CBC numbers. If this is an underlying cancerous condition where the bone marrow is defective, numbers most likely won’t change through diet or nutrition. Cancer cells will proliferate because the mechanism that can prevent this from happening has fooled the immune system.
Does your wife’s peripheral blood work show signs of blasts?
Has she had a bone marrow biopsy?
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Hug
2 ReactionsMs. Lori, you are such a gem!
I too have had some fear and believe fear is a good thing if it motivates not stagnates. Information is power, there are a lot of different views I think to fit different situations and we are all different and have different needs and treatments. Ms. Lori has been tremendously helpful and level-headed. I'm in a not know stage of PV. We can't find the cause so far, we have checked my stomach organs, and nothing significant. I found labs from 2015 where my RBC and HT were elevated if not high. So I've had it for a few years now. I've been referred to a cardiologist now and also referred to a sleep apnea test. I understand from my doctor that sleep apnea can cause this elevation. I know I have not slept well since my cervical injuries and surgeries in 2003 and 2006. So we are still looking for the cause and again if I understand correctly, if we don't find an obvious cause then I could still have PV and my body or bones or bone marrow could just be screwy. The issue is when you don't have a clear-cut gene-supportive diagnosis or have clear-cut damages. I've got damage but it's age-related or injury-related so I don't have a clear-cut PV result at least yet.
We have tried one phlebotomy to see how I respond to it. I just had that done this past Friday.
We are all different, and this disease is different and has variations and versions, and well not all is known about it either. There isn't necessarily a finite answer or diagnosis or treatment for all. I hope everyone finds that perfect individual treatment that makes them feel better and has a good doctor and support. If I can help anyone to listen....I'm here! slow sometimes but I'm here.
Thank you Ms. Lori for all your level and supportive words and all on this site. It gives me lots of resources and a comfort.
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7 ReactionsHello Lori.
Thank you for your response and congratulations in apparently overcoming leukemia. My Wife has not had a bone marrow biopsy nor has one been ordered. There has been no noted indication of "blasts" although the term is new to me and I will be researching.
We did get a JAK2 test which indicated positive although no Allele burden numbers were provided and our Hematologist inaccurately states that burder numbers are not relevant to Polycythemia vera. This same doctor told my Wife a year ago in July that she was going to have a stroke immediately. We did not have insurance at that time and were quoted a $2,000.00 fee for phlebotomy. When we tried to pursue phlebotomy through blood centers at a rate of $50.00 we were required to get a prescription of sorts. I spent months searching facilities and begging this Hematologist for the correct paperwork before I finally got it. That is fear inducement with no alternative imposed inhumanely by a doctor. We finally got my Wife's hematocrit down from 66 to normal, obtained good insurance and returned to this doctor who has since only recommended Hydroxyurea. Knowing that hydroxyurea actually promotes escalation to Myelofibrosis and Leukemia as well as not wanting to ingest something that if it is placed on a countertop the top must be triple washed, caused us to seek alternatives. There seem to be many people out there that are not happy or confident in their doctors. The global experience with covid, masks etc... has promoted this apprehension and big Pharma appears to be the only ones to benefit. I want my beautiful Wife to be healthy and happy but I don't want her to be subjected to the obvious lies and fear induced deceptions thus encountered. My original pursuit through this media was info on Besremi as interferons are a natural product of the body, it is a more targeted therapy and I thought it would be less invasive on her lifestyle. When reading the list of adverse effects and hearing from people who required extensive testing and monitoring, I'm not so sure. I had been considering platelet apheresis / leukopheresis as the the doctor now states that those number will cause a stroke although there is no proof of that. When I perform all the diligence required to obtain such therapy through a specialized clinic, the doctor notes indicate that I am responsible for pushing my Wife to a leukemic state. This same doctor emphatically states that no patient on hydroxyurea ever requires apheresis. I am surrounded by an industry of inaccuracy which despite their lack of knowledge, force their medications upon us and when refused, I am tantamount to a murderer. We have an appointment with a new doctor on the 22nd of August.
Thank you for your time and thoughtful response.
Keith
Correction: Studies of hydroxyurea in the treatment of myeloproliferative neoplasms (MPNs) such as polycythemia vera (PV), have not shown to increase the risk of transforming the MPN to leukemia.
Reference: Leukemia secondary to myeloproliferative neoplasms https://ashpublications.org/blood/article/136/1/61/456028/Leukemia-secondary-to-myeloproliferative-neoplasms
"Although some reports previously identified hydroxyurea as an independent risk factor for post-MPN AML, subsequent studies have not substantiated these claims. As such, hydroxyurea remains an important therapeutic consideration for symptomatic, chronic-phase disease per consensus MPN treatment guidelines."
Reference: Acute Myeloid Leukemia Following Myeloproliferative Neoplasms: A Review of What We Know, What We Do Not Know, and Emerging Treatment Strategies https://www.thejh.org/index.php/jh/article/view/1042/682
"Hydroxyurea has consistently shown to have no increased risk of leukemic transformation and remains a standard treatment for myeloproliferative neoplasm (MPN) patients."
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2 ReactionsGood morning, @chella65. Thank you for your kind words. I’m happy I can be that voice of calmness and comfort for you. I can assure you I wasn’t always this way but my experience with overcoming an aggressive form of leukemia has put life into a different perspective for me. I always feared the worst…not even knowing what that meant! I think we humans all have that fear of the unknown or some nebulous thoughts to “What if??” Oddly, after experiencing ‘my worst’ I was left with a sense of calmness and learned not to fear much of anything…ok, heights are still an issue! 😅
Our blood is incredibly complex so it can be a challenge sometimes to pinpoint what is causing a condition such as PV. Your doctor is right, there can be a correlation between sleep apnea and a high RBC and Hematocrit. If you’re not getting enough oxygen while you’re sleeping, the kidneys sense this and send a signal for more red blood cells to be produced. The cardiologist or your hematologist can also check the erythropoietin (EPO) level in your blood. It’s a hormone that your kidneys primarily produce and helps your body maintain a healthy amount of red blood cells (erythrocytes). If it’s low, that can show you’re not getting enough oxygen. They may also check your kidney function…usually there is indication of issues there with blood work.
The overnight oximetry test is super easy. It uses the little oximeter unit that you’ve most likely had when having blood work done. It checks for oxygen levels in the blood. You clip it on your finger overnight, connected to a wrist band that collects the data.
If this isn’t the issue, and if your doctor hasn’t done so already, you may likely have more blood work done to check for an acquired gene mutation such as JAK2 mutation. That is the usual culprit for myeloproliferative blood conditions. Your doctor may also suggest a bone marrow biopsy. (Sounds much worse than reality) The doctor takes a sample of the marrow and peripheral blood from the bone marrow…which is the manufacturing site of our blood…the heart of the immune system. That can give your hematologist an overall picture of the health of your marrow and its ability to produce healthy blood cells.
Our bodies are meant to heal. But sometimes things get thrown off track and then we need help to get back to functioning properly.
I’m right here for you any time. ☺️ Please let me know what you find out from your oximetry test, ok?
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1 ReactionGood morning, Keith. I have to confess that you and I are not on the same page with our opinions of the medical community. I have the utmost respect for my teams of hematologist oncologists and bone marrow transplant team. I learned to trust the research, data, and statistics behind the treatments I was given for my AML and the transplant. These people, the chemotherapy and drugs all served to give me a second chance at life. I am in a durable remission. I am 4 years post transplant, incredibly healthy, feeling as though nothing has ever happened…and back to no drugs or medications.
I truly do understand your consideration for not wanting your wife to take chemo or anything that isn’t a natural product. I lived my entire adult life following naturopathic guidelines. But unfortunately, life threw me a curveball and I ended up with a very aggressive form of leukemia. Bloodwork showed I had acquired 3 mutations which made it very difficult to treat and the odds were definitely not in my favor. This was nothing that naturopathic means could eradicate. So out came the big guns…serious chemotherapy and a bone marrow transplant at Mayo Clinic. I was a poster child for big pharma…whom I’ve also learned to respect. Because those awful drugs, well, they are the reason I’m alive today!
I’m so sorry your wife is having to deal with a blood cancer because they can be complex. She’s tested positive for the JAK2 mutation which is the most common underlying cause for a myeloproliferative disorder. https://www.verywellhealth.com/jak2-mutation-5217909
I know you are trying to find alternative answers to spare her from having chemotherapy. Believe me…I really truly understand! But sometimes what we want is different than what is needed.
I hope that your wife’s new hematologist oncologist will help you understand that if your wife needs medication that you’ll both consider this for her sake and that you will learn to trust the education and years of experience the doctor has to offer.
The doctor may also suggest a bone marrow biopsy to get to the blood manufacture center of the body to see if your wife’s bone marrow is able to produce healthy blood products. I mentioned blasts in my previous reply. Those are immature white blood cells and are generally only found inside the marrow. If your wife’s blood work is showing any of these blasts in her peripheral blood that can be an indication for leukemia. So that would be important to find out. I know that you’re preferring to have blood run from an outside lab so you may want to mention that to them when you send the sample…to check for blasts.
I am here to be supportive and I’m genuinely concerned for you and your wife. So please don’t take anything I written to be contentious. I see that you’re earnestly researching and looking for answers for your lovely wife. No one wants to see their loved ones suffer. My husband was/is the same way. But after all was said and done, we learned to trust my doctors. They were my first line of defense against a disease that had me 9 toes and a toenail from pushing up daisies from the underside.
I’m here for you and will help answer any questions based on my education and experience throughout my blood cancer and transplant journey.
Was your wife having any symptoms that led to the discovery of her PV or was this discovered through a routine physical/blood work?
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5 ReactionsHi Lori, I'm waiting to hear the results of a "financial aid" application for Besremi. I guess I'll go back on it staying at a low dose for as long a duration as possible, if the cost becomes reasonable. I think the oncologist suggested 100 mcg twice a month, watching blood counts monthly. (I'd been checked every two weeks up to this point.)
Glad your liver is well. My qigong teacher says "smile to your liver and it will smile back at you."
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2 ReactionsGood morning, @treeore. I hope you’re able to catch a break with the cost of Besremi. When the insurance approval went through for one of my meds a few years back, the drug came from a specialty pharmacy. The person assigned to my case from the pharmacy mentioned that there were grants depending on income level. I didn’t meet the criteria but it was a substantial and appreciated break for anyone that was eleible. I know some of our specialty meds can come with a high price tag. So best wishes on that!
The good news, from what I’m reading, is that your leash is a little longer now from blood work? That’s a positive sign. Means your doctor is feeling comfortable enough with your blood numbers to give you a little more time between appts. When that started happening for me, I was a little nervous in the beginning but then began to realize it was a very good sign. ☺️
Is the 100 mcg dose you’ll take monthly less than what you were receiving previously? Is this more of a maintenance dosage?
I meant to ask, how did that SUP paddle board adventure/experience work turn out this summer??