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?
Thank you for your quick response. I feel it’s beneficial to be knowledgeable about our condition. I will see my hematologist in April after three months. I hope the results of my lab work will remain normal.
I am happy to report my platelet counts have dropped to normal by taking a daily baby aspirin and taking HU three times a week. I have experienced some joint pain, (off & on) tiredness and loss of appetite. A small price to pay!
Yes, HU is classified as a chemo drug. It is widely used for sickle cell anemia, some chronic leukemias, and MPNs like ours. I have had ET x 17 years, on HU x 6 years. I am doing OK. Take care!
I read that the the MNPs were classified as cancer at some point because the definition of cancer includes uncontrolled cell growth and that at one point MNPs were not considered cancer but disorders. It was desired to get them classified as such in order to allow more research funding. Not sure if that is true but the cancer definition fits. WHO classified them as cancers in 2008.
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?
Thank you for your answer. It's true they are blood cancers, although they can be slow yet progressive to develop. Because you can live a long life with these blood cancers with treatment, some people think they are merely conditions, but they are not. It's good to take the diagnosis seriously as a result. I had family members tell me unsolicited that I should not worry because I really don't have cancer. Having read through the posts, I'm feeling a bit better about taking the HU although I have not started yet. I'm having blood work done in a week and then will know what my platelet levels are, and how much they might have gone up, and then I will start. I have scheduled a visit at the mayo clinic for a second opinion, first available was late May. Ahead of my visit, I'm trying to prepare by formulating questions. If you have any suggestions, I would love to know.
Thank you for your answer. It's true they are blood cancers, although they can be slow yet progressive to develop. Because you can live a long life with these blood cancers with treatment, some people think they are merely conditions, but they are not. It's good to take the diagnosis seriously as a result. I had family members tell me unsolicited that I should not worry because I really don't have cancer. Having read through the posts, I'm feeling a bit better about taking the HU although I have not started yet. I'm having blood work done in a week and then will know what my platelet levels are, and how much they might have gone up, and then I will start. I have scheduled a visit at the mayo clinic for a second opinion, first available was late May. Ahead of my visit, I'm trying to prepare by formulating questions. If you have any suggestions, I would love to know.
A good question is: What symptoms might I have that I should call the office to report. I have had ET for 17 years, and I am still trying to get a straight answer for this!
Also ask if you need to coordinate ET care with hemo if you needed surgery or treatment for something like a heart condition or diabetes. Never know what's around the corner.
If you have really great insurance and are HU averse (saw yr post on another thread), ask about Besremi (interferon injections). They are not without side effects, but some here are doing very well.
Thanks so much @nohrt4me! I'm adding these questions to my list. If you think of anything else, please let me know.
I'm also inviting anyone else reading this to share:
-questions that you may like answers to,
-questions that you may have asked in the past and did not get a satisfactory answer to or none,
-or,questions that you thought to ask and have asked and did get an answer to.
Thank you for your answer. It's true they are blood cancers, although they can be slow yet progressive to develop. Because you can live a long life with these blood cancers with treatment, some people think they are merely conditions, but they are not. It's good to take the diagnosis seriously as a result. I had family members tell me unsolicited that I should not worry because I really don't have cancer. Having read through the posts, I'm feeling a bit better about taking the HU although I have not started yet. I'm having blood work done in a week and then will know what my platelet levels are, and how much they might have gone up, and then I will start. I have scheduled a visit at the mayo clinic for a second opinion, first available was late May. Ahead of my visit, I'm trying to prepare by formulating questions. If you have any suggestions, I would love to know.
Ask what alternatives there are to taking HU.
Is it hereditary, have seen some on here, saying their father had it and also one who said she was third generation. Have been told it isn't . Let me know what they say if you ask please.
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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?
-
Like -
Helpful -
Hug
12 ReactionsThank you for your quick response. I feel it’s beneficial to be knowledgeable about our condition. I will see my hematologist in April after three months. I hope the results of my lab work will remain normal.
I am happy to report my platelet counts have dropped to normal by taking a daily baby aspirin and taking HU three times a week. I have experienced some joint pain, (off & on) tiredness and loss of appetite. A small price to pay!
-
Like -
Helpful -
Hug
8 ReactionsI didn't want to repeat the explanation that appears above. I've had ET for 3 1/2 years and I'm taking HU
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Hug
7 ReactionsThat’s wonderful news! Thank you for sharing!
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Helpful -
Hug
1 ReactionYes, HU is classified as a chemo drug. It is widely used for sickle cell anemia, some chronic leukemias, and MPNs like ours. I have had ET x 17 years, on HU x 6 years. I am doing OK. Take care!
-
Like -
Helpful -
Hug
8 ReactionsI read that the the MNPs were classified as cancer at some point because the definition of cancer includes uncontrolled cell growth and that at one point MNPs were not considered cancer but disorders. It was desired to get them classified as such in order to allow more research funding. Not sure if that is true but the cancer definition fits. WHO classified them as cancers in 2008.
-
Like -
Helpful -
Hug
7 ReactionsThank you for your answer. It's true they are blood cancers, although they can be slow yet progressive to develop. Because you can live a long life with these blood cancers with treatment, some people think they are merely conditions, but they are not. It's good to take the diagnosis seriously as a result. I had family members tell me unsolicited that I should not worry because I really don't have cancer. Having read through the posts, I'm feeling a bit better about taking the HU although I have not started yet. I'm having blood work done in a week and then will know what my platelet levels are, and how much they might have gone up, and then I will start. I have scheduled a visit at the mayo clinic for a second opinion, first available was late May. Ahead of my visit, I'm trying to prepare by formulating questions. If you have any suggestions, I would love to know.
-
Like -
Helpful -
Hug
5 ReactionsA good question is: What symptoms might I have that I should call the office to report. I have had ET for 17 years, and I am still trying to get a straight answer for this!
Also ask if you need to coordinate ET care with hemo if you needed surgery or treatment for something like a heart condition or diabetes. Never know what's around the corner.
If you have really great insurance and are HU averse (saw yr post on another thread), ask about Besremi (interferon injections). They are not without side effects, but some here are doing very well.
-
Like -
Helpful -
Hug
7 ReactionsThanks so much @nohrt4me! I'm adding these questions to my list. If you think of anything else, please let me know.
I'm also inviting anyone else reading this to share:
-questions that you may like answers to,
-questions that you may have asked in the past and did not get a satisfactory answer to or none,
-or,questions that you thought to ask and have asked and did get an answer to.
-
Like -
Helpful -
Hug
4 ReactionsAsk what alternatives there are to taking HU.
Is it hereditary, have seen some on here, saying their father had it and also one who said she was third generation. Have been told it isn't . Let me know what they say if you ask please.
-
Like -
Helpful -
Hug
3 Reactions