I am 75 and I just started taking Hydrea every other day. I’m new too. I’ve only had 3 capsules so far. I take them at night with lots of water with some food. No side effects so far. Hope you do well!
I’m on my 4th pill today and just received a call from my oncologist’s nurse. She’ll be checking in every week to see how I’m feeling and to answer any questions. It feels great to have such good medical doctors!
@lynnebgraham
Thank you for your response. Your question about alternatives to HU has been added. Can you tell me why you are looking for alternatives to HU? And what kind?
Regarding you question whether it is hereditary, what does the 'it' refer to? Can you let me know why this is important to you, so I can refine the question and thus explore a better possible answer?
This is what I do know at this point: Regarding the JAK2 gene mutation, this is NOT hereditary in the sense that you are NOT born with it. I am interested in the JAK2 mutation, because that is what I have and was used to make my diagnosis of having ET. The JAK2 mutation develops later in life for reasons currently not understood. I have confirmed this information with my hemo at my initial visit. I'm personally wondering what's behind or drives the JAK2 mutation and have this in my question bank.
And yes, I will be back with what I learn eventually.
I just learned that my JAK2 is positive. I spoke with my oncologist before the test results were finished. He said he had talked to the hematologist and it wouldn’t change the diagnosis for the medication and how we move forward.
According to the Leukemia and Lymphoma Society and by the opinion of most doctors in the medical community, “Myeloproliferative neoplasms (MPNs) are types of blood cancers that begin with an abnormal mutation (change) in a stem cell in the bone marrow. The change leads to an overproduction of any combination of white cells, red cells and platelets.”
You can read about them here: https://www.lls.org/myeloproliferative-neoplasms
Essential thrombocythemia-ET, along with Polycythemia Vera (PV), and Myelofibrosis are types of the blood conditions associated with MPN’s. So technically they are considered blood cancers.
I just had a long chat with my hematologist while in for my 6 month followup, having had AML 6 years ago. He knows I mentor for Mayo Connect and sometime we have discussions about different forms of blood cancers and conditions, how they mutate, and potential treatments. We talked about MPN’s this time. The take away is. yes, they are a type of chronic blood cancer by definition. Blood cancer refers to malignancies that affect the blood, bone marrow, and lymphatic system. In ET, a change has occurred where there is an overproduction of platelets.
However, as others in this support group have stated, as did my doctor…
”These are conditions where a person is more likely to die with the disease than from it.”
HU is a type of chemotherapy used to treat MPNs and other forms of cancers. There are also targeted drugs and immunosuppressive medications which may be used to treat ET as well.
Reading through previous posts it looks as though you have been taking HU since last summer. How has it been working for you? Have your platelet levels dropped to normal? Are you experiencing any side effects?
Hello,
My Platelets have now dropped to the 270 and I am now being seen every 3 months. I still suffer from burning feet (if someone knows of a treatment let me know) I am trying to watch the occurrence to determine if it happens after I have wore heals or worked out. I also, now have the darkness in my feet from the Hydrea. However, my least worries. wish there was away to treat the color discoloration.
Just thought I would share an update.. Hope all is well!
Hello,
My Platelets have now dropped to the 270 and I am now being seen every 3 months. I still suffer from burning feet (if someone knows of a treatment let me know) I am trying to watch the occurrence to determine if it happens after I have wore heals or worked out. I also, now have the darkness in my feet from the Hydrea. However, my least worries. wish there was away to treat the color discoloration.
Just thought I would share an update.. Hope all is well!
Do you have nail discoloration or skin? I have heard of HU dark streaks in nails, but 6 yrs on HU, and I haven't noticed that. Yet. Skin discoloration is one I haven't heard. I do have foot tingles, prickles, and burning, but hemo told me that's a circulation issue and do exercise for lower extremities. So I have an exercise bike. Helps to keep my feet moisturized, soak in cool water, put feet up. Your platelets seem good. Will doc reduce HU dose for you?
Thanks for your response. I am going to check if the skin discolorations is a vein issue. however Dr. did say that HU can cause the change in skin. I just ordered me a treadmill yesterday, I go to the gym about 3 days a week but, it is convenient at home. I asked her will she lower the dosage back to 500 mg she said we will watch and make a determination after she see me in 3 months..
Thanks again!
Thanks for your response. I am going to check if the skin discolorations is a vein issue. however Dr. did say that HU can cause the change in skin. I just ordered me a treadmill yesterday, I go to the gym about 3 days a week but, it is convenient at home. I asked her will she lower the dosage back to 500 mg she said we will watch and make a determination after she see me in 3 months..
Thanks again!
I just learned that my JAK2 is positive. I spoke with my oncologist before the test results were finished. He said he had talked to the hematologist and it wouldn’t change the diagnosis for the medication and how we move forward.
I also had a positive JAK2. My count is 553...I'm just on baby aspirin. My Next/first blood test is in one month. We'll see what my count is at that time and adjust meds at that time. Hope you do well with HU.
I’m on my 4th pill today and just received a call from my oncologist’s nurse. She’ll be checking in every week to see how I’m feeling and to answer any questions. It feels great to have such good medical doctors!
I just learned that my JAK2 is positive. I spoke with my oncologist before the test results were finished. He said he had talked to the hematologist and it wouldn’t change the diagnosis for the medication and how we move forward.
Hello,
My Platelets have now dropped to the 270 and I am now being seen every 3 months. I still suffer from burning feet (if someone knows of a treatment let me know) I am trying to watch the occurrence to determine if it happens after I have wore heals or worked out. I also, now have the darkness in my feet from the Hydrea. However, my least worries. wish there was away to treat the color discoloration.
Just thought I would share an update.. Hope all is well!
Do you have nail discoloration or skin? I have heard of HU dark streaks in nails, but 6 yrs on HU, and I haven't noticed that. Yet. Skin discoloration is one I haven't heard. I do have foot tingles, prickles, and burning, but hemo told me that's a circulation issue and do exercise for lower extremities. So I have an exercise bike. Helps to keep my feet moisturized, soak in cool water, put feet up. Your platelets seem good. Will doc reduce HU dose for you?
Thanks for your response. I am going to check if the skin discolorations is a vein issue. however Dr. did say that HU can cause the change in skin. I just ordered me a treadmill yesterday, I go to the gym about 3 days a week but, it is convenient at home. I asked her will she lower the dosage back to 500 mg she said we will watch and make a determination after she see me in 3 months..
Thanks again!
Fingers crossed that you can get HU dose down and lose some of the bothersome side effects!
I also had a positive JAK2. My count is 553...I'm just on baby aspirin. My Next/first blood test is in one month. We'll see what my count is at that time and adjust meds at that time. Hope you do well with HU.