I’m mid-forties with ET trending toward PV. My kids are seven and its been really stressful to think about how this will impact our future. I’m also a single mom, and have used gummies to keep the stress down on the past so I’m wondering how things will works once I’m on meds. These meds seem to have quite a few side effects.
Curious, but did everyone do a bone marrow biopsy before official PV diagnosis?
My official PV diagnosis came after blood tests confirmed by positive JAK2 result.. No bone marrow biopsy needed.. This was a little over 2 years ago.. I had 4 phlebotomies and was immediately put on hydroxyurea which I still take every day.. I am one of the “lucky” ones in that I have tolerated the HU with little to no side effects…
Great advice from @Lori. OV doesn’t have to define you. Someone else’s advice was that with meds it is very manageable and altho it sounds more defeatist but is not meant as such, you are likely to die with it not from it. Energy levels may some days be impacted, but you can adjust your activities. Sounds like you’re doing well changing your lifestyle - keep on going!
Thank you…just taking it day to day. I’ve had three phlebotomies so far. My levels were 18.5 and 58 before 3rd draw. They started at 21.3 and 68. My ferritin levels were only at 8 before I started. The fatigue and joints aching, have been my biggest side effects. My vision definitely has been affected, but that could just be age. Honestly, since last summer I was thinking all these symptoms were from starting menopause because my periods started to be a bit irregular. Lots of similar symptoms.
Are gummies ok to take?? I was a regular marijuana smoker for approximately 20 years, but was afraid that that might have been a cause to my diagnosis and have not smoked since. I don’t miss it, but do get anxious with this new diagnosis. I’m only 48 with kids that are 15 and 11. I worry constantly that this is going to cut my life short which is terrifying.
Great advice from @Lori. OV doesn’t have to define you. Someone else’s advice was that with meds it is very manageable and altho it sounds more defeatist but is not meant as such, you are likely to die with it not from it. Energy levels may some days be impacted, but you can adjust your activities. Sounds like you’re doing well changing your lifestyle - keep on going!
I’m mid-forties with ET trending toward PV. My kids are seven and its been really stressful to think about how this will impact our future. I’m also a single mom, and have used gummies to keep the stress down on the past so I’m wondering how things will works once I’m on meds. These meds seem to have quite a few side effects.
Curious, but did everyone do a bone marrow biopsy before official PV diagnosis?
Thank you for the response…honestly I’ve done so well with not using marijuana that it probable just better to stay away from it… I’m really trying to turn a new leaf when it comes to what I put in my body!! I’m trying to cut out sugars and processed food as much as possible. I don’t really drink alcohol so that one is easy. Hopefully that will help with slowing down any progression! Thank you for your positive words. I’m so happy to hear that you no longer have leukemia…what a relief that must be.
Are gummies ok to take?? I was a regular marijuana smoker for approximately 20 years, but was afraid that that might have been a cause to my diagnosis and have not smoked since. I don’t miss it, but do get anxious with this new diagnosis. I’m only 48 with kids that are 15 and 11. I worry constantly that this is going to cut my life short which is terrifying.
Hi @sap21981. Before you try gummies, make sure you discuss this with your hematologist. It may be perfectly fine to take them but some supplements, including marijuana, gummies, etc., can interfere with some medications. It’s better to be safe and ask a medical professional first. 🙂
I can really appreciate your fear with having this blood condition and the worry about your future for your children. As a mom (or dad) it’s terrifying thinking you won’t be here for your kids! No matter how old they get they still need their parents.
My advice, after surviving a very aggressive form of leukemia, is to try and rework your perspective to accept that you now have a condition that impacts your life but it doesn’t have to define it! This isn’t going to take you out anytime soon and you’ve just started treatment. There are options ahead of you for treatment for a good long time. We all live with the possibility of some freak accident, like being hit by a bus! But if we lived with that level of fear daily, we’d never leave the house. ☺️
I also have sores in my mouth. As for poor sleep, I am fortunate that I can legally purchase cannabis gummies here in NJ. Helps me sleep, plus it gets me happy. Lol
Are gummies ok to take?? I was a regular marijuana smoker for approximately 20 years, but was afraid that that might have been a cause to my diagnosis and have not smoked since. I don’t miss it, but do get anxious with this new diagnosis. I’m only 48 with kids that are 15 and 11. I worry constantly that this is going to cut my life short which is terrifying.
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!)
Update: I went off Besremi after the 6 first injections, but over these 2.5 months w/o drugs my liver went back to normal. (I did some milk thistle, avoided all alcohol and took a liver detox formula from the acupuncturist.) I am in the midst of changing doctors, which seems to be taking a long time (the clinic has been inefficient in many ways), but I may go back on Besremi for the long haul at a low dose to see if it can do the same trick of lowering platelets and getting me into the good HCT zone WITHOUT messing with my liver. The clinic is footing the bill for the first 6 (Medicare-denied) shots since they should have known that I had to self inject to get Medicare's coverage. Now I'll apply for financial aid from the drug manufacturer to see if I can continue. Both my doctor and the Mayo specialist at first said to try HU post Besremi, but when I asked about low dose interferon use, they consented. I have been comparatively light hearted while off the Besremi, but then a few symptoms appeared in a mild way, which tells me that SOME of what I blamed the drug for was due to the PV itself. Or so I surmise. By the way, the manufacturer had a different formula for reducing dosage in case of liver enzyme escalation from my doctor's , who just took me off "cold turkey." This tells me to always check with drug makers even though everyone says "of course you must defer to your doctor's opinion." I don't mind deferring, but I want to know if my doctor is really up to date on drug protocols.
I agree with "welcome to your new world" @cmcj and this forum has been a game changer for me. Eases any anxiety I may have over different symptoms or just the need for moral support from others going through the same thing. I consider myself a young 60, very healthy with my diet (I'm GF & DF to reduce any inflammation which causes autoimmune diseases, rampant in my family) and pretty high level of activity.
The hardest part for me so far is the extreme fatigue, I don't do resting well. I have found I have to manage my activity and have had to reduce it greatly. However my goal is to find my "new norm" with what hemoglobin # makes me feel the best. I was brought down to 11 (I'm 5'2" 125) and it's definitely too low for me and my guess is I'm now anemic which is causing the fatigue. I'm really hoping that is it when I get my CBC done this Tues.
I've read and seen from this group that getting a Saline infusion after each phlebotomy helps with the down days that can occur after it.
I'm only on one low dose aspirin daily, no other meds and both my HemoOnc doc & GP both don't feel I need any meds now. I'm not even getting a bone biopsy for a couple years from my first evaluation with the HemoOnc doc.
I've been reading as much as possible, I'm ignoring all references to once diagnosed you have 14 or 20 years to live. It has got to ve different for everyone and I'm in the best shape and healthiest I've been my whole life besides the stupid PV 🙃
Stay strong and ask lots of questions like you're doing!
I haven’t read about saline infusions? I’m 56 and recently diagnosed this past January. I actually feel good after the phlebotomies. The doctor tells me to drink water and eat something salty before I go. My platelets remain very high so I’m on the Hydroxyurea 3X a week currently. So jealous of those who can do without it. Good luck!
When I was diagnosed, with PCV and Jak 2 positive, the first thing they did was a bone marrow biopsy. My only symptom was itching after bath and shower. I have a phlebotomy every 3- 6 month and 2 baby aspirin a day as needed to keep numbers down. My oncologist suggested chemo drugs to help with symptoms but said it would not cure the disease. I chose to just have phlebotomy’s and 2 baby aspirin a day. So far, I’m doing fine, at times, I feel a bit fatigued but find a quick rest and then a walk, gets me back on track. Each person and body is different, so you need to listen to your own body and try different things. I’m not on any special diet but was told to stay away from liver. Good Luck, I’m 74 and plan on at least 10 more years of fun. Find a Dr you like and trust. I did get 2 different opinions from different medical facilities.
Wow, surprised to read that they did a bone biopsy immediately. My doctor said they can get the diagnosis from my labs/symptoms and the JAK2 being positive. He asked if I wanted a bone marrow test and I said will my treatment be the same, he replied exactly the same. He said it wasn’t necessary. I feel like the facilities do make their $$ off the sick sadly and we as patients need to be vigilant. Many may want/need the biopsy for their own piece of mind and that’s totally understandable. I’m just 56 and needed much time to process this diagnosis being I’ve been healthy my entire life. I wanted to do just phlebotomies and baby aspirin but my platelets shot up every time they took me off the Hydroxyurea. Just taking it 3X a week and hoping we finally got the dosage correct. So happy for you that you can be controlled without the drugs, truly!
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My official PV diagnosis came after blood tests confirmed by positive JAK2 result.. No bone marrow biopsy needed.. This was a little over 2 years ago.. I had 4 phlebotomies and was immediately put on hydroxyurea which I still take every day.. I am one of the “lucky” ones in that I have tolerated the HU with little to no side effects…
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1 ReactionThank you…just taking it day to day. I’ve had three phlebotomies so far. My levels were 18.5 and 58 before 3rd draw. They started at 21.3 and 68. My ferritin levels were only at 8 before I started. The fatigue and joints aching, have been my biggest side effects. My vision definitely has been affected, but that could just be age. Honestly, since last summer I was thinking all these symptoms were from starting menopause because my periods started to be a bit irregular. Lots of similar symptoms.
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Helpful -
Hug
2 ReactionsGreat advice from @Lori. OV doesn’t have to define you. Someone else’s advice was that with meds it is very manageable and altho it sounds more defeatist but is not meant as such, you are likely to die with it not from it. Energy levels may some days be impacted, but you can adjust your activities. Sounds like you’re doing well changing your lifestyle - keep on going!
-
Like -
Helpful -
Hug
2 ReactionsI’m mid-forties with ET trending toward PV. My kids are seven and its been really stressful to think about how this will impact our future. I’m also a single mom, and have used gummies to keep the stress down on the past so I’m wondering how things will works once I’m on meds. These meds seem to have quite a few side effects.
Curious, but did everyone do a bone marrow biopsy before official PV diagnosis?
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Helpful -
Hug
2 ReactionsThank you for the response…honestly I’ve done so well with not using marijuana that it probable just better to stay away from it… I’m really trying to turn a new leaf when it comes to what I put in my body!! I’m trying to cut out sugars and processed food as much as possible. I don’t really drink alcohol so that one is easy. Hopefully that will help with slowing down any progression! Thank you for your positive words. I’m so happy to hear that you no longer have leukemia…what a relief that must be.
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Like -
Helpful -
Hug
3 ReactionsHi @sap21981. Before you try gummies, make sure you discuss this with your hematologist. It may be perfectly fine to take them but some supplements, including marijuana, gummies, etc., can interfere with some medications. It’s better to be safe and ask a medical professional first. 🙂
I can really appreciate your fear with having this blood condition and the worry about your future for your children. As a mom (or dad) it’s terrifying thinking you won’t be here for your kids! No matter how old they get they still need their parents.
My advice, after surviving a very aggressive form of leukemia, is to try and rework your perspective to accept that you now have a condition that impacts your life but it doesn’t have to define it! This isn’t going to take you out anytime soon and you’ve just started treatment. There are options ahead of you for treatment for a good long time. We all live with the possibility of some freak accident, like being hit by a bus! But if we lived with that level of fear daily, we’d never leave the house. ☺️
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Like -
Helpful -
Hug
5 ReactionsAre gummies ok to take?? I was a regular marijuana smoker for approximately 20 years, but was afraid that that might have been a cause to my diagnosis and have not smoked since. I don’t miss it, but do get anxious with this new diagnosis. I’m only 48 with kids that are 15 and 11. I worry constantly that this is going to cut my life short which is terrifying.
-
Like -
Helpful -
Hug
1 ReactionUpdate: I went off Besremi after the 6 first injections, but over these 2.5 months w/o drugs my liver went back to normal. (I did some milk thistle, avoided all alcohol and took a liver detox formula from the acupuncturist.) I am in the midst of changing doctors, which seems to be taking a long time (the clinic has been inefficient in many ways), but I may go back on Besremi for the long haul at a low dose to see if it can do the same trick of lowering platelets and getting me into the good HCT zone WITHOUT messing with my liver. The clinic is footing the bill for the first 6 (Medicare-denied) shots since they should have known that I had to self inject to get Medicare's coverage. Now I'll apply for financial aid from the drug manufacturer to see if I can continue. Both my doctor and the Mayo specialist at first said to try HU post Besremi, but when I asked about low dose interferon use, they consented. I have been comparatively light hearted while off the Besremi, but then a few symptoms appeared in a mild way, which tells me that SOME of what I blamed the drug for was due to the PV itself. Or so I surmise. By the way, the manufacturer had a different formula for reducing dosage in case of liver enzyme escalation from my doctor's , who just took me off "cold turkey." This tells me to always check with drug makers even though everyone says "of course you must defer to your doctor's opinion." I don't mind deferring, but I want to know if my doctor is really up to date on drug protocols.
-
Like -
Helpful -
Hug
2 ReactionsI haven’t read about saline infusions? I’m 56 and recently diagnosed this past January. I actually feel good after the phlebotomies. The doctor tells me to drink water and eat something salty before I go. My platelets remain very high so I’m on the Hydroxyurea 3X a week currently. So jealous of those who can do without it. Good luck!
Wow, surprised to read that they did a bone biopsy immediately. My doctor said they can get the diagnosis from my labs/symptoms and the JAK2 being positive. He asked if I wanted a bone marrow test and I said will my treatment be the same, he replied exactly the same. He said it wasn’t necessary. I feel like the facilities do make their $$ off the sick sadly and we as patients need to be vigilant. Many may want/need the biopsy for their own piece of mind and that’s totally understandable. I’m just 56 and needed much time to process this diagnosis being I’ve been healthy my entire life. I wanted to do just phlebotomies and baby aspirin but my platelets shot up every time they took me off the Hydroxyurea. Just taking it 3X a week and hoping we finally got the dosage correct. So happy for you that you can be controlled without the drugs, truly!
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