Rising platelet count whilst on hydroxy

[UKZA]

Hi there, please could I ask for some advise on my situation.

I have been on hydroxycarbomide for a few years . It initially brought my platelet count right down, but it also reduced my neutrophils and I have had neutropenia for at least 2 years. They have been experimentally reducing my HU each visit to see if they can raise my neutrophils, but they are sitting at 1.2 and 1.3 . My platelets on the other hand are now at 850. I am on 6 x 500mg a week. I believe the problem is, that I have a different consultant each time and have only had one face to face visit over this period. One has mentioned a change of medication to angrelide, another interferon. Another suggested a BMB but this is yet to be booked. I am experiencing extreme fatigue and joint pain and feel I have lost strength and even confidence in my body. I constantly feel achy as though I am starting a fever. I got osteonecrosis in my leg due to a bone barrow odema after a fall. I know I am getting older, but don’t feel that these aches and pains are normal and I almost feel they are ignored as irrelevant to my ET when discussed. I have always been sporty and full of energy, so really struggling with this extreme fatigue. My question is this, at what stage do they stop reducing the HU and decide to change tactics? Has anyone else had a similar situation with constantly low neutrophils?

Sorry for the long story, but I really feel I’d like to reach out for other opinions

Thank you,

Penny

[Solyesh]

Penny

So sorry to hear you are going through a rough time. First and foremost, it sounds like you need and deserve more consistent and better care. A different consultant each time makes it hard for them to be able to track progress/symptoms/etc. Even if they try and familiarize themselves prior to your appointment, we all know they have limited time and bandwidth. Also, they should most definitely not be dismissing your symptoms. They could defintiely be related to your MPN.

As for HU, it does happen in some cases that its efficiency wanes over time..usually in these cases it seems like they would increase your dosage but given your neutropenia that would be difficult. It is time to push for the scheduling of the BMB (more detailed information about what is going on) and to speak, preferably face-to-face with a consultant (and preferably an MPN specialist) to work out the best path forward once you have your BMB results.

Best of luck

[UKZA in reply to Solyesh]

Thank you for taking the time to reply to me. I have a telephone appointment booked for the 11 January. I think the time for trial and error, or wait and see is over. I want my life back and will insist on the next step. I think you have all validated what I was feeling. Take care. Penny

[hunter5582]

Sorry to hear about the struggles to deal with the ET and access appropriate care.

It is unacceptable that you are seeing a different consultant each time you have an appointment. This precludes forming a critical doctor-patient relationship that is needed to manage a MPN. In fact, when managing a MPN it is very important to consult with a MPN Specialist. Most hematologists lack experience with MPNs due to how rare they are. Optimal care can only be achieved in consultation with a MPN-expert doctor.

Given what you describe, most MPN Specialists would have already ordered the BMB if you have not already had one. In addition, changing your treatment plan would have also been addressed. It sounds like you may be refractory to and intolerant of hydroxycarbimide. There are two first-line treatment options for ET, hydroxycarbamide and Pegasys. There are also second-line treatment options like anagrelide and Jakafi.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Assertive patients receive higher quality care. Passive patients do not. Suggest it is time to be very assertive. this would start by seeking consultation with a MPN Specialist. You may simply want to switch all of your MPN care to a MPN Specialty care clinic. Here is a list.

mpnforum.com/list-hem./

All the best.

[UKZA in reply to hunter5582]

Thank you so much for your reply, as mentioned previously, you have all validated what I have been feeling, so I will insist on the next step being taken. Take care . Penny

[Meatloaf9]

Hi, I agree with the other replies you have already received. I don't know your age but you say you are getting older. Age does play a factor in mpn's. 6 HU per week is a relatively low dose I believe. I take 9 HU per week for PV. I agree with the other posts that a BMB might be in order and if possible see a mpn specialist. Best to you going forward.

[UKZA in reply to Meatloaf9]

Thanks for your reply, I believe I am fairly young to be feeling as I do, 52 years. I was on a much higher dose of 2 a day, but this has been reduced to get my neutrophils in check, especially over the pandemic with me working full time throughout. It is really just the attitude of let’s reduce this and see what happens, nothing has changed in 2 years, other than my platelets rising. So I feel reassured that I am doing the right thing by becoming a more assertive patient. Thank you and take care

[Meatloaf9]

Hi again, 52 is definitely young, I am 73, wish I were 52. 2 years is a long time to hope for a change. Hope you can see a mpn specialist. Being assertive is a definite plus, don't be afraid to offend anyone, I have had Docs walk out of the room by being assertive (not offensive) - they always came back- so far. Best Always.

[saltmarsh]

Ukza - sorry about what you are going through. I very strongly agree with what everyone else has said about the need to be assertive. I am 3 years with pv and felt that my doctor was not focusing enough on my symptoms. After a bout of anemia a few months ago, I found a new doctor - a hematolgy oncologist who is just terrific. My former doctor was the head of the Oncology department and had the credentials - just didn't have the time or interest to focus on my situation. Very glad I made the change. You are your best advocate.