During my first year of HU, my platelets bounced up and down......finally they leveled off, and have been more or less the same. My oncologist said platelet counts can vary from morning to night.....so you want yours directionally correct, doesn't have to be exact
Ditto! Even a slight infection can cause them to go up. My oncologist says 600 or under is acceptable for platelets even though the lab sheet states 450 max. 45 is the Hematocrit goal 😊
I think we all have to do our own research and listen to our own doctors. Mine is ET w/JAK2. According to my Hematologist oncologist (who is department chair at his hospital), this is a neoplasm and not necessarily a cancer. He explained it like diabetes. It can often be controlled, but it will never go away. In some cases it does advance, which is why it is so important to have regular follow-up visits.
Be sure to tell your Heme doc of any alternative treatment you are doing on your own or in combination with another healthcare provider. My heme doc also does research into alternative therapies, and either agrees or disagrees with me based on the latest findings that he is aware of.
In any case, it is important to stay active, stay social, and keep the best outlook you can. Happy new year everyone.
I went down to one hydroxyurea every second day and now my numbers went back up and going for a blood drop.Its been almost 2 Yeats and still haven't figured out the amount to take. Hope it is not another 2 hr draw today. They said to get a blood test ever week now.So now will go back to 1 pill every day and try adjusting all over again.So we need to have patience. Happy New Year to all !!!
Yes, it is a blood cancer, but is manageable for many, depending on the treatment that best matches the patient. My diagnosis was one year ago this month, ET with Jak 2, platelets 780K, age 69. I am very fortunate that I am stable with 500 mg of HU, 2x week, plus daily, oral iron supplement, and daily baby aspirin. I've been on baby aspirin for 30 years for "sticky" blood, but platelets were always on the normal side until 2022. Now, my platelets are about 520-550K at my 3 month checkups. My side effects are fatigue, dry skin, dry eyes, bruising easily, and bleeding gums. With the bleeding gums, it's become more of a challenge to brush and floss, but I keep at it. I also started seeing my dentist for cleanings every 3 months to keep up my oral health. I do find that with the fatigue, it's best to schedule activities for the afternoon. The day after my HU, I try to stay home and relax. I came into this with no symptoms, just high platelets picked up at my annual physical with the FP. Interestingly enough, my platelets started increasing after COVID-19 immunizations. I had my 6th Covid immunization in October 2023. My platelets jumped 25K at my Dec. 2023 labs. MPN specialists do not think there is a connection, but I am suspicious. Still, I don't want COVID-19, so I keep up with my vaccines and wearing my mask. I have not had COVID-19 thus far and no colds during the pandemic. Be the best as you can with this blood cancer. Try to live your life but be cautious around large groups of people to avoid illness with our low immunity.
Best,
Karla from Maryland
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I love this good positive feedback . Thx, good to know.
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1 ReactionDitto! Even a slight infection can cause them to go up. My oncologist says 600 or under is acceptable for platelets even though the lab sheet states 450 max. 45 is the Hematocrit goal 😊
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Helpful -
Hug
1 ReactionI think we all have to do our own research and listen to our own doctors. Mine is ET w/JAK2. According to my Hematologist oncologist (who is department chair at his hospital), this is a neoplasm and not necessarily a cancer. He explained it like diabetes. It can often be controlled, but it will never go away. In some cases it does advance, which is why it is so important to have regular follow-up visits.
Be sure to tell your Heme doc of any alternative treatment you are doing on your own or in combination with another healthcare provider. My heme doc also does research into alternative therapies, and either agrees or disagrees with me based on the latest findings that he is aware of.
In any case, it is important to stay active, stay social, and keep the best outlook you can. Happy new year everyone.
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Like -
Helpful -
Hug
4 ReactionsI went down to one hydroxyurea every second day and now my numbers went back up and going for a blood drop.Its been almost 2 Yeats and still haven't figured out the amount to take. Hope it is not another 2 hr draw today. They said to get a blood test ever week now.So now will go back to 1 pill every day and try adjusting all over again.So we need to have patience. Happy New Year to all !!!
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Like -
Helpful -
Hug
2 ReactionsYes, it is a blood cancer, but is manageable for many, depending on the treatment that best matches the patient. My diagnosis was one year ago this month, ET with Jak 2, platelets 780K, age 69. I am very fortunate that I am stable with 500 mg of HU, 2x week, plus daily, oral iron supplement, and daily baby aspirin. I've been on baby aspirin for 30 years for "sticky" blood, but platelets were always on the normal side until 2022. Now, my platelets are about 520-550K at my 3 month checkups. My side effects are fatigue, dry skin, dry eyes, bruising easily, and bleeding gums. With the bleeding gums, it's become more of a challenge to brush and floss, but I keep at it. I also started seeing my dentist for cleanings every 3 months to keep up my oral health. I do find that with the fatigue, it's best to schedule activities for the afternoon. The day after my HU, I try to stay home and relax. I came into this with no symptoms, just high platelets picked up at my annual physical with the FP. Interestingly enough, my platelets started increasing after COVID-19 immunizations. I had my 6th Covid immunization in October 2023. My platelets jumped 25K at my Dec. 2023 labs. MPN specialists do not think there is a connection, but I am suspicious. Still, I don't want COVID-19, so I keep up with my vaccines and wearing my mask. I have not had COVID-19 thus far and no colds during the pandemic. Be the best as you can with this blood cancer. Try to live your life but be cautious around large groups of people to avoid illness with our low immunity.
Best,
Karla from Maryland
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3 ReactionsI agree. I have had PV for 14 years. I take Hydrea 1000 mg daily. I have phlebotomies when needed. My ferritin is very low at 4.
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