@birgitr Ok, thanks. I see my Haematologist on Thursday and will be asking to start Peg. Will be interesting to see what he says as I've only been on Asprin so far & my platelets are around 1000. I hear it takes quite a while for them to go down on Peg. Good luck with your self injecting.
@kat260 Best luck for your appointment on Thursday 💪. Fingers crossed that he is gonna put you on peg. Yes it will take time to decrease the platelets- it’s more like a marathon than a sprint. Please keep me posted 🌹
@kat260 Best luck for your appointment on Thursday 💪. Fingers crossed that he is gonna put you on peg. Yes it will take time to decrease the platelets- it’s more like a marathon than a sprint. Please keep me posted 🌹
@birgitr Hi. Had my haemo appointment today. Strangely, my platelets were down from 940 to 880 and as he says the asprin renders half my platelets inactive he didn't see the need to start me on treatment. I stated my preference of using Peg when the time comes. He was fine with that and confirmed that I would start on a dose of 45. I had a suspected DVT last week. It was the second false alarm in the last couple of months so I had really resigned myself to the fact it was time for treatment, if anything, to put my mind at rest that I wasn't a walking time bomb. Anyway, I heard about an MPN specialist a couple of hours away and I am going to get a second opinion. My haemo knows of her and said that she favours using interferon and he will be interested to hear her recommendation. Not sure when the appointment will be. Hopefully in the not too distant future. I will keep you posted. Good luck with your injection tomorrow.
@kat260 The dosage is gonna depend on the next bloodwork results. There are no strict guidelines because the meds are individually working. Next Friday I will inject the drug by myself, I will keep you posted how it has worked.
Now I have seen your message, thank you so much for your long and precise description simply keeping me updated, I am pretty grateful for that because our journey seems to be a kind of similar and so I am glad to be able to share our experiences. Yes I guess it is so valuable to get a second opinion and what a coincidence that your doctor is totally ok with that. And to know that he will prescribe peg when necessary definitely helpful. And can’t wait for her recommendations because in our age it might be relieving to act in a direction of health modification. We have to be aware that only dealing with the sideeffects allows the vaf to increase over time, that’s not what we want 😅. Can you remind me about your vaf which is the number?
Now I have seen your message, thank you so much for your long and precise description simply keeping me updated, I am pretty grateful for that because our journey seems to be a kind of similar and so I am glad to be able to share our experiences. Yes I guess it is so valuable to get a second opinion and what a coincidence that your doctor is totally ok with that. And to know that he will prescribe peg when necessary definitely helpful. And can’t wait for her recommendations because in our age it might be relieving to act in a direction of health modification. We have to be aware that only dealing with the sideeffects allows the vaf to increase over time, that’s not what we want 😅. Can you remind me about your vaf which is the number?
@birgitr Oh good. Happy to share. As you say, we do seem to be similar though I have not had any HU treatment yet except daily Aprin 100mg and I turned 61 last month! Totally agree. Definitely worth trying Interferon to reduce that allele burden. I really hope it works for us. My VAF is 16.25. Yours? I didn't have a bone marrow biopsy. Did you? I've read most say you need to have it but my haemo says it's not necessary. I'll be interested to see if the other Dr recommends it.
@birgitr Oh good. Happy to share. As you say, we do seem to be similar though I have not had any HU treatment yet except daily Aprin 100mg and I turned 61 last month! Totally agree. Definitely worth trying Interferon to reduce that allele burden. I really hope it works for us. My VAF is 16.25. Yours? I didn't have a bone marrow biopsy. Did you? I've read most say you need to have it but my haemo says it's not necessary. I'll be interested to see if the other Dr recommends it.
Hooray that you're getting a second, more expert opinion.
I am baffled you were told "the aspirin renders half my platelets inactive . . ."
It's not platelet "activity" that causes problems. With a count of 880, you're way out of the normal platelet range. Aspirin makes platelets more slippery, but it doesn't magically create more room for all those oversized, misshapen ET platelets. Extra platelets crowd the blood vessels (= headaches, vision weirdness, dizziness) and may distend the spleen.
The production of all those extra platelets is another concern. It's really taxing your bone marrow.
My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested bloodletting but that costs too much for our income. We are hitting brick walls with every turn. He was diagnosed in 2020 after having a heart attack. We have insurance with my employer but copays are unreal and he hasn't been able to work since his heart attack. Just looking for encouragement.
My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested bloodletting but that costs too much for our income. We are hitting brick walls with every turn. He was diagnosed in 2020 after having a heart attack. We have insurance with my employer but copays are unreal and he hasn't been able to work since his heart attack. Just looking for encouragement.
@dwilson072516
Hi.
If your husband does not have the JAK2 V617F mutation, which is commonly associated with Polycythemia vera and other myeloproliferative neoplasms, he may be eligible to donate blood at a standard blood bank.
Primarily managed by organizations like the American Red Cross and America’s Blood Centers.
@birgitr Oh good. Happy to share. As you say, we do seem to be similar though I have not had any HU treatment yet except daily Aprin 100mg and I turned 61 last month! Totally agree. Definitely worth trying Interferon to reduce that allele burden. I really hope it works for us. My VAF is 16.25. Yours? I didn't have a bone marrow biopsy. Did you? I've read most say you need to have it but my haemo says it's not necessary. I'll be interested to see if the other Dr recommends it.
@kat260 interestingly I haven’t done a bone marrow biopsy yet. This MPN specialist who recommended peg has strongly advised me to do one, however, my normal hematologist is OK with a clinical diagnosis. Honestly, at the moment, I am absolutely thankful because it would impact my mood significantly. So I’m happy that I’m on peg even without a biopsy. Needless to say I’m not sure if my insurance is OK with that as well, we will see. Additionally, I am aware that the most common approach is to do a biopsy. By the way my vaf is 26.
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@kat260 Best luck for your appointment on Thursday 💪. Fingers crossed that he is gonna put you on peg. Yes it will take time to decrease the platelets- it’s more like a marathon than a sprint. Please keep me posted 🌹
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2 Reactions@birgitr Hi. Had my haemo appointment today. Strangely, my platelets were down from 940 to 880 and as he says the asprin renders half my platelets inactive he didn't see the need to start me on treatment. I stated my preference of using Peg when the time comes. He was fine with that and confirmed that I would start on a dose of 45. I had a suspected DVT last week. It was the second false alarm in the last couple of months so I had really resigned myself to the fact it was time for treatment, if anything, to put my mind at rest that I wasn't a walking time bomb. Anyway, I heard about an MPN specialist a couple of hours away and I am going to get a second opinion. My haemo knows of her and said that she favours using interferon and he will be interested to hear her recommendation. Not sure when the appointment will be. Hopefully in the not too distant future. I will keep you posted. Good luck with your injection tomorrow.
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1 Reaction@kat260 How did your doctors appointment go? Any important news to share? Has he recommended peg?
@birgitr Replied to you last night but not sure why it hasn't shown for you. Can you see it? Last page, comment above yours.
Now I have seen your message, thank you so much for your long and precise description simply keeping me updated, I am pretty grateful for that because our journey seems to be a kind of similar and so I am glad to be able to share our experiences. Yes I guess it is so valuable to get a second opinion and what a coincidence that your doctor is totally ok with that. And to know that he will prescribe peg when necessary definitely helpful. And can’t wait for her recommendations because in our age it might be relieving to act in a direction of health modification. We have to be aware that only dealing with the sideeffects allows the vaf to increase over time, that’s not what we want 😅. Can you remind me about your vaf which is the number?
@birgitr Oh good. Happy to share. As you say, we do seem to be similar though I have not had any HU treatment yet except daily Aprin 100mg and I turned 61 last month! Totally agree. Definitely worth trying Interferon to reduce that allele burden. I really hope it works for us. My VAF is 16.25. Yours? I didn't have a bone marrow biopsy. Did you? I've read most say you need to have it but my haemo says it's not necessary. I'll be interested to see if the other Dr recommends it.
@kat260
Hooray that you're getting a second, more expert opinion.
I am baffled you were told "the aspirin renders half my platelets inactive . . ."
It's not platelet "activity" that causes problems. With a count of 880, you're way out of the normal platelet range. Aspirin makes platelets more slippery, but it doesn't magically create more room for all those oversized, misshapen ET platelets. Extra platelets crowd the blood vessels (= headaches, vision weirdness, dizziness) and may distend the spleen.
The production of all those extra platelets is another concern. It's really taxing your bone marrow.
Please, share what you hear from the specialist.
Kudos for advocating for yourself!
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1 ReactionMy husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested bloodletting but that costs too much for our income. We are hitting brick walls with every turn. He was diagnosed in 2020 after having a heart attack. We have insurance with my employer but copays are unreal and he hasn't been able to work since his heart attack. Just looking for encouragement.
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Helpful -
Hug
2 Reactions@dwilson072516
Hi.
If your husband does not have the JAK2 V617F mutation, which is commonly associated with Polycythemia vera and other myeloproliferative neoplasms, he may be eligible to donate blood at a standard blood bank.
Primarily managed by organizations like the American Red Cross and America’s Blood Centers.
-
Like -
Helpful -
Hug
1 Reaction@kat260 interestingly I haven’t done a bone marrow biopsy yet. This MPN specialist who recommended peg has strongly advised me to do one, however, my normal hematologist is OK with a clinical diagnosis. Honestly, at the moment, I am absolutely thankful because it would impact my mood significantly. So I’m happy that I’m on peg even without a biopsy. Needless to say I’m not sure if my insurance is OK with that as well, we will see. Additionally, I am aware that the most common approach is to do a biopsy. By the way my vaf is 26.
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Like -
Helpful -
Hug
2 Reactions