Hi everyone, I’m new here and live in Sydney.
Posted: Thu Apr 22, 2021 1:35 pm
Hi everyone, it’s Jacqui here. I’ve finally got around to introducing myself here!
Thanks to Steve for making this site available and I hope you are all doing as well as can be expected.
I’m 62 and was diagnosed with ET jak2 in early March ‘21. The haematologist at RPA in Sydney was very blasé and within three minutes he had me out the door with a prescription for Hydrea and told me not to be alarmed as “it is not chemotherapy”.
After coming home and doing a bit of research I was left reeling and feeling isolated but I found MPN voice and then heard about you guys and I’ve spoken to Steve a couple of times. So thanks to Steve for passing on Cecily Forsyth’s recommendation from fellow patients who have seen her. I’ve seen her twice now, she has thoroughly impressed me, it feels so good to be in the hands of someone I completely trust. Her nurse practitioner, Jacqui, that sat in at my appointment yesterday is lovely and excellent, too!
It took me seeing 3 haematologists to find someone I had faith in and who didn’t seem like some rote practitioner, so, obviously I can’t recommend her
highly enough.
As I was diagnosed with ET the first thing she did was have me get a BMB, just as well, as it turns out I have Myelofibrosis F not ET! I just found out yesterday and there I was just getting used to the ET. So that’s been a real blow. My fibrosis is 2 on a scale of 0-3 so not good. Geez, that was fast, how long have I had this I wonder!
As much as Cecily loves Pegasys she doesn’t feel it’s right for me, for 2 reasons, for one I am prone to depression and the best Interferon to counter that risk isn’t available here (U.S only) and as I may need a bone marrow transplant down the line if I’d been on Interferon it would mess with that. Sorry, not very technical but that’s all I’ve got at the moment.
So, she’s waiting on my chromosome results, due in a couple of weeks, and if they tell her enough then I won’t need the genetic sequencing test that will cost me $650. These are tests to see what other mutations I may have...important information for prescribing and prognosis.
From what I gather, I’m guessing I’ll shortly be on Ruxolitinib and need a bone marrow transplant down the line. Cecily said the JAK inhibitor Ruxolitinib makes your symptoms much better, so yay, that’s something.
FYI,
as I’d had an ET diagnosis, after my first appointment, she prescribed me 2 x Cartia a day and no meds until results were in. When I queried her about the fact that it should be 2x 100mg a day she cited this study and said it was the latest protocol. I am now back to one a day since the MF diagnosis.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5992153/
My platelets are still around the 650 mark.
My clotting factors are fine.
My red blood cells are low to normal **Hydrea lowers you red blood cells as well as your platelets.
White cells fine.
Large and abnormal shaped cells with some pockets of clumping in my bone marrow.
Increased Reticulum /fibrosis in marrow, graded as MF2.
The worst part is that my possible years on the planet have suddenly diminished and the only people my husband and I have are each other, we adore each other, and the idea of leaving him alone is killer.
Wishing you all the best new friends!
Thanks to Steve for making this site available and I hope you are all doing as well as can be expected.
I’m 62 and was diagnosed with ET jak2 in early March ‘21. The haematologist at RPA in Sydney was very blasé and within three minutes he had me out the door with a prescription for Hydrea and told me not to be alarmed as “it is not chemotherapy”.
After coming home and doing a bit of research I was left reeling and feeling isolated but I found MPN voice and then heard about you guys and I’ve spoken to Steve a couple of times. So thanks to Steve for passing on Cecily Forsyth’s recommendation from fellow patients who have seen her. I’ve seen her twice now, she has thoroughly impressed me, it feels so good to be in the hands of someone I completely trust. Her nurse practitioner, Jacqui, that sat in at my appointment yesterday is lovely and excellent, too!
It took me seeing 3 haematologists to find someone I had faith in and who didn’t seem like some rote practitioner, so, obviously I can’t recommend her
highly enough.
As I was diagnosed with ET the first thing she did was have me get a BMB, just as well, as it turns out I have Myelofibrosis F not ET! I just found out yesterday and there I was just getting used to the ET. So that’s been a real blow. My fibrosis is 2 on a scale of 0-3 so not good. Geez, that was fast, how long have I had this I wonder!
As much as Cecily loves Pegasys she doesn’t feel it’s right for me, for 2 reasons, for one I am prone to depression and the best Interferon to counter that risk isn’t available here (U.S only) and as I may need a bone marrow transplant down the line if I’d been on Interferon it would mess with that. Sorry, not very technical but that’s all I’ve got at the moment.
So, she’s waiting on my chromosome results, due in a couple of weeks, and if they tell her enough then I won’t need the genetic sequencing test that will cost me $650. These are tests to see what other mutations I may have...important information for prescribing and prognosis.
From what I gather, I’m guessing I’ll shortly be on Ruxolitinib and need a bone marrow transplant down the line. Cecily said the JAK inhibitor Ruxolitinib makes your symptoms much better, so yay, that’s something.
FYI,
as I’d had an ET diagnosis, after my first appointment, she prescribed me 2 x Cartia a day and no meds until results were in. When I queried her about the fact that it should be 2x 100mg a day she cited this study and said it was the latest protocol. I am now back to one a day since the MF diagnosis.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5992153/
My platelets are still around the 650 mark.
My clotting factors are fine.
My red blood cells are low to normal **Hydrea lowers you red blood cells as well as your platelets.
White cells fine.
Large and abnormal shaped cells with some pockets of clumping in my bone marrow.
Increased Reticulum /fibrosis in marrow, graded as MF2.
The worst part is that my possible years on the planet have suddenly diminished and the only people my husband and I have are each other, we adore each other, and the idea of leaving him alone is killer.
Wishing you all the best new friends!
) and he’s been very forthcoming with information and his desire to help is really something...so more to be grateful for.
and awake refreshed for the evening to come.
MPN, a Cruise I never anticipated, between all of us Cruisers, we have a Wealth of Knowledge & Understanding....
and was horizontal for several days after the move.
I got to read your message in full, it gladdened my heart and that bizzare fatigue that kept me horizontal for 8 full days seems to have vanished! I’m sure it’ll be back sometime but just to know there’s respite from it and that at times it wont be as severe, I like to think, gives me hope. Its also comforting, in a way, to hear how we are all in that tired boat...sailing the MPN waves together 
.