Haematology Appointment Update

[lizzziep]

I’ve seen the haematologist in person this afternoon - first time in clinic for over 3 years. It was a new doctor, not seen him before. He said he wasn’t 100% sure about the ET diagnosis, first given over 13 years ago. As I haven’t got the JAK2 mutation, plus other counts ok. My bone marrow biopsy showed fibrosis but not a lot, he said that could have been caused by the Anagrelide. Anyway he had more blood taken which will be sent for Next Generation Sequencing so he can get a definitive answer, this could take up to 12 weeks.

Meanwhile I have to come off the Anagrelide for 4 weeks to see what difference this makes to my blood counts. Then may be going on to Peg Interferon depending on next blood results. ( or even a return to hydroxy)

I was very worried about the appointment as the clinical nurse had intimated leukaemia and myleofibrosis! So I am somewhat relieved, but also a bit concerned as to what the sequencing will uncover.

Current blood counts - all in normal ranges except for -

Haemoglobin - 98

Platelets - 589

RBC - 3.28

Haematocrit - 0.29

RDW - 17.1

Haemaglobin has been around that number for at least 6 months. I’ve had difficulty getting full bloods results so requested a print off which I was given.

[hunter5582]

The doctor's response is a bit confusing. With ET, it is usually only the platelets that are elevated. People with ET can also have the CALR or MPL mutation - or be triple-negative. I believe that you were under evaluation for pre-MF. I would want clarity about the status of that. I would also be wondering about the low HGB/HCT/RBC. Did the doc also check your iron levels? Lots of questions here.

It is a good thing the doc sent off for a NGS panel. I am thinking the doc will be checking for all three of the driver mutations along with the non-driver panel. That would be really good information to have.

I do not recall if you have consulted with a MPN Specialist. If not, it is certainly time to get an expert opinion. That would be the best way to get your questions answered.

All the best.

[lizzziep in reply to hunter5582]

Thank you, he said there wasn’t much fibrosis in the bone marrow and he thought that was most likely caused by the Anagrelide.

[Wyebird]

glad you had a face to face appointment. Have you been given anything for anaemia? I know that when I go below 100 I really struggle.

[lizzziep in reply to Wyebird]

I’ve had iron supplement prescribed, hardly made any difference, plus an iron infusion, still no difference. I am tired a lot of the time - good job I’m retired, I’d really struggle if I was working.

[ts75]

Hi! Think of it as “clarity is good,” is my advise. Also, I find saying that Ana “caused” bone marrow fibrosis seems misleading - as I understand, it is just not as good as Hydro or Peg at stopping/delaying it (aka disease progression). So either you were misdiagnosed or your ET has progressed to a mild state of post-ET MF. Anyway, you will get real answers soon and I think that will be good for you. I hope for the best!

[Hmmm79 in reply to ts75]

My haematologist said the same, that being on anagrelide could well have caused my bone marrow fibrosis, it's been found that that does happen

[Hmmm79]

I've got bone marrow fibrosis too and the doctor said that could well have been caused by anagrelide, which I was on for ten years. Your other numbers don't too too bad... good luck!

[Wyebird]

I went down as low as 93. I was unable to to iron because my ferritin was above 700. Eventually I requested I come off 17 Hydroxicarbomide and 9 anagrelide a week and start Peg. Best thing I ever did. My haemoglobin has taken 18 months to rise to over 110.

Don’t be afraid of trying it. I’m ET Calr

Keep me posted.

Good luck

[lizzziep in reply to Wyebird]

Thank you, I’ve read before that Anagrelide can cause anaemia. All drugs seem to have negative side effects, I’m hoping for one that has the main side effect of making you look 20 years younger! 😆 Highly unlikely though. Doctor said peg was a possibility depending on blood results after being off the Anagrelide for a month.

[gilded in reply to lizzziep]

Lizzie, I also meant to say that I’m issued with a full report of blood tests very soon thereafter. The report is emailed to me automatically by the NHS and Patients Know Best as I have signed up to both forums.

[Wyebird in reply to lizzziep]

haha when I started Peg I felt sick for two days after the jab. I called it the 5-2 diet. I was quite upset when the side effects reduced with each jab.

[gilded]

Hi Lizzie! I’m in the UK , treated by the NHS ( after initial private consultations) . I see the NHS consultant face to face every 10 weeks or so .