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?
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.
thanks - no bone biopsy set. Hemo wanted to do another draw for another final test. My HCT is 49.somthing. Sounds like my next step is a pulmonology, but I just had a chest CT that was clean. I do use a c-pap and family history of clots. I was not clear why she didn't do a marrow biopsy, because in what I've read, that would be the next step. This is becoming a nightmare that I just can't face in light of all the stressors of life.
thanks - no bone biopsy set. Hemo wanted to do another draw for another final test. My HCT is 49.somthing. Sounds like my next step is a pulmonology, but I just had a chest CT that was clean. I do use a c-pap and family history of clots. I was not clear why she didn't do a marrow biopsy, because in what I've read, that would be the next step. This is becoming a nightmare that I just can't face in light of all the stressors of life.
I ❤️ NJ! I’m a native New Yorker living in HELL in Houston currently. Many friends and family all over NJ. This is the first summer in over 20 years I haven’t gone back home b/c of trying to get this PV under control. Thinking it is for now so we will head up east for the change of seasons in October. Also doing land every month to check platelets and other counts. After just being diagnosed, two months seems a long stretch for your next CBC so just pay attention to how you’re feeling incase you need to get checked sooner. Enjoy NJ!
Can't ever take jersey out of any jersey girl 😉 or new york!
I could not live anywhere as hot as Texas, NJ is way too hot for me. Fall is a great time to visit, love the colors and it's football (we have 8 seats for Giants, family fun) and then ski season, my absolute fave ❤️ My goal is to be out West for 2-3 weeks and learn to keep the PV in check in higher elevations.
The PA felt she wanted to give me a break but of course I need to go in and get a CBC if I'm not feeling right. I had very specific crashing/stabbing type headaches before they brought my hemoglobin back down to a normal number. They'll be a telling sign I need to go in. I'll see my oncologist this Thurs and if he doesn't agree with waiting that long, I'll certainly go in sooner.
Try and stay cool, I saw something funny on IG where a woman in Texas baked a loaded of bread in her mailbox. Not sure it's really true but funny. Not so much for those dealing with the Temps.
I ❤️ NJ! I’m a native New Yorker living in HELL in Houston currently. Many friends and family all over NJ. This is the first summer in over 20 years I haven’t gone back home b/c of trying to get this PV under control. Thinking it is for now so we will head up east for the change of seasons in October. Also doing land every month to check platelets and other counts. After just being diagnosed, two months seems a long stretch for your next CBC so just pay attention to how you’re feeling incase you need to get checked sooner. Enjoy NJ!
I was told before I had the Jak2 positive that if it were Polycythemia secondary that they recommend a body scan. They said they could begin with an complete abdominal ultrasound but ultimately the scan was needed. Something is causing your numbers to be what they are and you need to figure out what it is now rather than later. It’s hard not to stress but you need answers in order to fix what ever is wrong. Be persistent. You will figure it out and you will be better!
I'm with you 💯 about don't stop searching for what is the cause of secondary Polycythemia, it means there's something going on somewhere in your body that likely isn't good and needs treatment. Whatever it is, it's triggering your body to generate more red blood cells that it doesn't need, a response it thinks is correct to try and fix an issue. Keep getting tested for everything possible until they find the reason. I can only imagine how scary and frustrating it is right now with not knowing.
My first Hema/Onc doc thought mine was secondary at first, he felt my lungs may he compromised and the issue because I get pneumonia quite easily when I get sick. I would get very sick because I'd keep working and never rest, anyone would have eventually gotten very sick. Regardless, more extensive bloodwork showed definitively I have PV, not secondary. I did have a little ray of hope but decided either way, I've got this and will do everything needed to live a long, relatively healthy 😉, trying to get to and find my "new norm", and lots of fun & travel for the rest of my life. I won't lie, just had 2 very bad fatigue days which kinda makes me down but yesterday was good, got a lot done and today is another day.
I see my oncologist next week, have my list of questions and feel good about what he's going to say after getting my numbers this week and the PA letting me go 2 months before my next CBC.
Happy Sunday everyone, very dreary & rainy in NJ and the Canadian fires are making air quality bad (along with all the rain & pollen), I may spend majority of the summer at the lake in the Poconos. I'm lucky to have 3 family members that live there.
Wow, that’s outrageous! I’m glad insurance helps pay for it. I’d have to pay 20% after my 2k ded which of course I will meet every year now with the PV. Ins in this country is a joke but I’m grateful I have it ( I do pay for it though)
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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 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.
@nypara66 yes I am JAK2 and other mutation gene negative.
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1 ReactionHello, Have you had the JAK2 test yet? I’m sorry I didn’t see your previous post.
Yes, this is way too hot from even Texas, southern Texas here and it's the humidity.
It doesn't help to must be indoors but hopefully movement in weather soon.
Wishing you well and answers. It's not knowing limbo stage for me.
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1 Reactionthanks - no bone biopsy set. Hemo wanted to do another draw for another final test. My HCT is 49.somthing. Sounds like my next step is a pulmonology, but I just had a chest CT that was clean. I do use a c-pap and family history of clots. I was not clear why she didn't do a marrow biopsy, because in what I've read, that would be the next step. This is becoming a nightmare that I just can't face in light of all the stressors of life.
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1 ReactionCan't ever take jersey out of any jersey girl 😉 or new york!
I could not live anywhere as hot as Texas, NJ is way too hot for me. Fall is a great time to visit, love the colors and it's football (we have 8 seats for Giants, family fun) and then ski season, my absolute fave ❤️ My goal is to be out West for 2-3 weeks and learn to keep the PV in check in higher elevations.
The PA felt she wanted to give me a break but of course I need to go in and get a CBC if I'm not feeling right. I had very specific crashing/stabbing type headaches before they brought my hemoglobin back down to a normal number. They'll be a telling sign I need to go in. I'll see my oncologist this Thurs and if he doesn't agree with waiting that long, I'll certainly go in sooner.
Try and stay cool, I saw something funny on IG where a woman in Texas baked a loaded of bread in her mailbox. Not sure it's really true but funny. Not so much for those dealing with the Temps.
Stay well, stay strong 💪🙏
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1 ReactionI ❤️ NJ! I’m a native New Yorker living in HELL in Houston currently. Many friends and family all over NJ. This is the first summer in over 20 years I haven’t gone back home b/c of trying to get this PV under control. Thinking it is for now so we will head up east for the change of seasons in October. Also doing land every month to check platelets and other counts. After just being diagnosed, two months seems a long stretch for your next CBC so just pay attention to how you’re feeling incase you need to get checked sooner. Enjoy NJ!
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Helpful -
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1 ReactionI'm with you 💯 about don't stop searching for what is the cause of secondary Polycythemia, it means there's something going on somewhere in your body that likely isn't good and needs treatment. Whatever it is, it's triggering your body to generate more red blood cells that it doesn't need, a response it thinks is correct to try and fix an issue. Keep getting tested for everything possible until they find the reason. I can only imagine how scary and frustrating it is right now with not knowing.
My first Hema/Onc doc thought mine was secondary at first, he felt my lungs may he compromised and the issue because I get pneumonia quite easily when I get sick. I would get very sick because I'd keep working and never rest, anyone would have eventually gotten very sick. Regardless, more extensive bloodwork showed definitively I have PV, not secondary. I did have a little ray of hope but decided either way, I've got this and will do everything needed to live a long, relatively healthy 😉, trying to get to and find my "new norm", and lots of fun & travel for the rest of my life. I won't lie, just had 2 very bad fatigue days which kinda makes me down but yesterday was good, got a lot done and today is another day.
I see my oncologist next week, have my list of questions and feel good about what he's going to say after getting my numbers this week and the PA letting me go 2 months before my next CBC.
Happy Sunday everyone, very dreary & rainy in NJ and the Canadian fires are making air quality bad (along with all the rain & pollen), I may spend majority of the summer at the lake in the Poconos. I'm lucky to have 3 family members that live there.
Stay strong 💪 ✨️ 💓
It takes a village!
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4 ReactionsWow, that’s outrageous! I’m glad insurance helps pay for it. I’d have to pay 20% after my 2k ded which of course I will meet every year now with the PV. Ins in this country is a joke but I’m grateful I have it ( I do pay for it though)
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