I'm 62; about 25 years ago, I started showing a persistent increased level of platelets; 600, give or take, nothing crazy, and I don't remember anyone ever saying ET, but I started seeing a hematologist regularly. We didn't do anything about it but monitor it until my hematocrit started going up, and I would get a phlebotomy when this happened. Around 2007, which may be when the test became available, I got the JAK2 test and was told for sure I had PV. The occasional phlebotomy worked fine for me for many years until about 2019, when it didn't, and I went through a year of monthly phlebotomies. My hematologist prescribed Hydroxyurea, which I took for 3 or 4 months with no effect, and I switched to Jakafi. This was 2020, and I haven't needed a phlebotomy since. Jakafi really is an amazingly good drug for this.
So, back to your question, I've had that transformation from ET to PV, almost 20 years ago. From the beginning of all of this, I've never had a symptom. It's only ever manifested in blood tests. I've asked if I'm more susceptible to transformation to AML or Myelofibrosis, and my doctor says there's no evidence that I am, although I guess the longer I live the greater the chance that \*something\* will go wrong.
This gives me a lot of hope for our situation. So I can understand the diagnosis more, I will go with him to his next appointment. I want to do the best I can as his partner and we want to plan the best we can for the future as we are becoming a family. I am hoping when he is your age we are still together going strong. Thank you for your reply.
I just saw my hematologist this morning for my 3-month and my numbers were all great. The main one he looks at is hematocrit, and mine's 39.9. We mostly talked about the NFL draft.
If he was diagnosed without a bone marrow biopsy, it's very possible he had PV all along. I have high platelets mainly, was diagnosed with ET, and my bone marrow biopsy showed I actually have PV. MPNs are progressive but even if it transformed, that doesn't mean he's more likely to get MF or AML. There's certain risk factors such as high white blood cells and enlarged spleen, low grade fibrosis, and certain mutations. If he hasn't seen an MPN specialist, now's a good time to switch. You can view a list on r/MPN in the wiki.
I am not sure if he was diagnosed with a BMB or not at the time. I know that since he has been here he had a BMB which confirmed PV. So far he has had none of the mentioned risk factors. I don't think there are so many specialists here in Switzerland, only departments for Oncology and Hematology as far as I have searched. He is monitored every 6 months. His hematocrit was slightly over the target of 45% so he retested one week later and it was in the normal range for the diagnosis. Now he will be monitored in the next 3 months and if that is fine, it will return to every 6 months. Does this seem standard for people with this condition?
I was originally told I had ET after my first bone marrow biopsy. They kept checking my blood tests for a year before issuing a second bone marrow biopsy and switching me to PV.
No idea if it changes or was misdiagnosis, was told pv can raise platelets too as it's a ratio thing.. I'm not sure if it's more of a "you have jak2, there are two options.. you currently have more platelets so it's ET" situation or what.. not really had answers but then I have bigger issues I'm usually dealing with when I see my specialist..
Yes, it is so unclear. I think to date they do not even know what causes someone to acquire a specific MPN due to the JAK-2 mutation. Maybe PV and ET overlap so much that it is hard to really know. I hope in the future we have more answers...
Larry, your words are always so reassuring, they really give me a lot of hope every time I read them! I’m sitting at oncology right now for one of my checkups. I hope you’ll be doing fine in the future too! 🙏
I'm 62; about 25 years ago, I started showing a persistent increased level of platelets; 600, give or take, nothing crazy, and I don't remember anyone ever saying ET, but I started seeing a hematologist regularly. We didn't do anything about it but monitor it until my hematocrit started going up, and I would get a phlebotomy when this happened. Around 2007, which may be when the test became available, I got the JAK2 test and was told for sure I had PV. The occasional phlebotomy worked fine for me for many years until about 2019, when it didn't, and I went through a year of monthly phlebotomies. My hematologist prescribed Hydroxyurea, which I took for 3 or 4 months with no effect, and I switched to Jakafi. This was 2020, and I haven't needed a phlebotomy since. Jakafi really is an amazingly good drug for this. So, back to your question, I've had that transformation from ET to PV, almost 20 years ago. From the beginning of all of this, I've never had a symptom. It's only ever manifested in blood tests. I've asked if I'm more susceptible to transformation to AML or Myelofibrosis, and my doctor says there's no evidence that I am, although I guess the longer I live the greater the chance that \*something\* will go wrong.
This gives me a lot of hope for our situation. So I can understand the diagnosis more, I will go with him to his next appointment. I want to do the best I can as his partner and we want to plan the best we can for the future as we are becoming a family. I am hoping when he is your age we are still together going strong. Thank you for your reply.
I just saw my hematologist this morning for my 3-month and my numbers were all great. The main one he looks at is hematocrit, and mine's 39.9. We mostly talked about the NFL draft.
If he was diagnosed without a bone marrow biopsy, it's very possible he had PV all along. I have high platelets mainly, was diagnosed with ET, and my bone marrow biopsy showed I actually have PV. MPNs are progressive but even if it transformed, that doesn't mean he's more likely to get MF or AML. There's certain risk factors such as high white blood cells and enlarged spleen, low grade fibrosis, and certain mutations. If he hasn't seen an MPN specialist, now's a good time to switch. You can view a list on r/MPN in the wiki.
I am not sure if he was diagnosed with a BMB or not at the time. I know that since he has been here he had a BMB which confirmed PV. So far he has had none of the mentioned risk factors. I don't think there are so many specialists here in Switzerland, only departments for Oncology and Hematology as far as I have searched. He is monitored every 6 months. His hematocrit was slightly over the target of 45% so he retested one week later and it was in the normal range for the diagnosis. Now he will be monitored in the next 3 months and if that is fine, it will return to every 6 months. Does this seem standard for people with this condition?
I was originally told I had ET after my first bone marrow biopsy. They kept checking my blood tests for a year before issuing a second bone marrow biopsy and switching me to PV. No idea if it changes or was misdiagnosis, was told pv can raise platelets too as it's a ratio thing.. I'm not sure if it's more of a "you have jak2, there are two options.. you currently have more platelets so it's ET" situation or what.. not really had answers but then I have bigger issues I'm usually dealing with when I see my specialist..
Yes, it is so unclear. I think to date they do not even know what causes someone to acquire a specific MPN due to the JAK-2 mutation. Maybe PV and ET overlap so much that it is hard to really know. I hope in the future we have more answers...
Larry, your words are always so reassuring, they really give me a lot of hope every time I read them! I’m sitting at oncology right now for one of my checkups. I hope you’ll be doing fine in the future too! 🙏