BMB results

[lizzziep]

Hello

After 6 long weeks I’ve finally got my bmb results. Spoke to the doctor this morning, biopsy showed some fibrosis/scarring, apparently Anagrelide, which I’ve been on for some years, can make this worse! So dosage is being reduced from 4 to 3 per day. Platelets currently at 495 but he said it should be ok if they go up to 600. Still anaemic - hg only 98, despite honey every day. He said reducing Anagrelide should help with anaemia. Bloods and review in 4 weeks, might have to go on iron tablets then, although they didn’t do much last time I was on them.

So, in some ways I’m relieved no major change in medication but not sure if I’m ‘happy’ with the advice.

[mhos61]

Hi Lizziep.

Have you thought about getting a second opinion with an MPN Specialist? Personally, I would want a bit more elaboration on ‘some fibrosis/scarring’.

Acknowledging Anagralide may have contributed to this, you would have thought other treatment options would have been discussed such as a Pegasys.

[lizzziep in reply to mhos61]

I’m going to see what the results are in 4 weeks and then maybe ask about a second opinion.

[Aneliv9]

Was there any suspicion for ET progression to MF?

[lizzziep in reply to Aneliv9]

That's why they asked for the bmb, as I've been anaemic for some time, despite sometimes being on iron tablets.

[EPguy]

As mhos61 you should have a grade of fibrosis in the report. It goes from 0-3.

I didn't know that anagrelide had such a risk. Here is summary of such a report:

"...anagrelide induced a significantly greater increase in bone marrow reticulin than did hydroxyurea as well as a higher rate of transformation to myelofibrosis at 5 years. Interestingly, four patients who developed fibrosis while taking anagrelide showed regression when switched to hydroxyurea."

sciencedirect.com/topics/me...

The idea that HU is less troublesome is known, but the specific fibrosis risk is worth our attention. This does point to using anagrelide only when other options are not available.

Your Dr's advice to be looser on the PLT control is consistent with what we see here and in reports. Esp if you can cut the anagrelide Dr's idea makes sense.

Has Dr discussed interferon (IFN)?

[lizzziep in reply to EPguy]

No other drugs were mentioned, I had a reaction to hydroxy after I'd been on it for about 3 years, I think I've been on Anagrelide for about 4 years. I'm trying to get my full blood counts, when I used to actually go to the clinic before the pandemic I was always given a print out, haven't had anything since then. Why do drugs only have negative side effects, you never get one that makes you look 20 years younger or 2 stone lighter.

[hunter5582]

I would agree with the feedback abut getting a second opinion from a MPN Specialist and in considering one of the interferons since you are HU-intolerant and are having a potential issue with Anagrelide. While we are each different in how we respond to these meds, some of us do much better on Pegasys/Besremi than we do on hydroxycarbamide or anagrelide. Pegasys is recognized as the other first-line treatment option for ET. mpnjournal.org/how-i-treat-...

I actually have two hematologists. A local doc and a MPN Specialist consultant who I see 2x/year. This arrangement works great. Here is the list of MPN expert docs. mpnforum.com/list-hem./

All the best.

[lizzziep in reply to hunter5582]

thank you

[Hopetohelp]

They should discuss other treatments with you so you have a choice. No fun being anaemic. Personally I like Pegasys and has been known to put some people in remission. Let us know how you get on and good luck

[Cja1956]

Hi Lizzie. I private messaged you but I also wanted to say I hear that I’m glad you had your BMB and got your results. My personal opinion is that your doctor isn’t doing enough to help with the anemia. Before I got diagnosed with post Et Mf, I had been on Anagrelide and I was very anemic. My new doctor took me off of it immediately. She put me back on hydroxyurea and gave me EPO injections weekly if my hemoglobin was 10.2. It took about four months to stabilize and that was in 2019. Hemoglobin has been over 10 ever since.

I agree with the others that you should seek a second opinion.

All the best,

Cindy

[Meatloaf9]

Hi, I agree with the others advice that you should have a second opinion from a hematologist who is considered a MPN Specialist. I also see two, a local Dr, and a Specialist who I see 2 or 3 times a year, there is a world of difference in the amount of knowledge they have about mpn's and their approach to treatment. Best to you going forward.

[Wyebird]

oh dear I didn’t know anagrelide could cause some fibrosis/scarring . As for the honey I’m testing my theory as 1 teaspoon a day wasn’t enough to maintain haemoglobin 110+ so I’m taking 2 now lol.

I couldn’t have iron tablets because of my ferritin levels. It could be the honey that’s stopping it dropping.

Currently it’s over 700

Have you tried Peg? You might feel more tired if your platelets rise to 600.

Hope your new dose suits you

[Wyebird]

I stand corrected I just want to clarify the anagrelide and fibrosis. I think I remember my consultant saying that could happen but if I stopped the anagrelide the fibrosis would go.

[lizzziep in reply to Wyebird]

thank you, I’m going to see what results the new dosage brings with counts and how I feel.

[Wyebird]

what ever you decide I wish you well. Hope it all works out

[lizzziep in reply to Wyebird]

Thank you

[katiewalsh]

Hi. My specialist said that high enough levels of Ferritin are necessary for your body to process iron. So I’ve had infusions of Ferritin. I don’t know if this information might be helpful. Katie

[lizzziep]

Thank you, I’ve had iron supplements from the hospital before but they didn’t do much apart from upset my stomach!