I am looking for some advice I am experiencing some unpleasant affects and not getting any information or help from my haematologist.
I was diagnosed with ET jak2 positive 18 months ago I signed my consent to Hydroxycarbamide treatment in September 2020 and haven’t seen my haematologist since having phone consultation every 2 to 3 months.
I work full time and do suffer with fatigue my platelets have been stable at 370 with enlarged red blood cells which my haematologist ensures me in normal for someone on Hydroxycarbamide
I am really struggling at the moment and had to take time off work due to;
Fatigue, throbbing pain in my fingers and toes, and sharp stabbing random pain in various parts of my body.
My GP who has been brilliant did some bloods last week the outcome is my platelets have reduced to 255 however my red blood cells are increasing in size. My GP is concerned and written to my haematologist with his concerns.
Has anyone else experienced these symptoms? I have emailed my McMillan nurse who informed me my blood are ok and there are no concerns which isn’t the same option as my GP.
I am really struggling to understand why my haematologist and McMillan nurses are so dismissive of my symptoms.
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YBSx
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I would suggest having a conversation about your symptoms and what nay be causing them and discuss the option of reducing your hydroxy for a trial to see if your symptoms improve whilst keeping your bloods stable, as it sounds like that’s what you want. Those are very low platelets so it doesn’t seem like a ridiculous option. If they aren’t helpful you can ask for a referral to a different specialist. If you say whereabouts in the uk you are I expect you will get some recommendations
Thanks for your reply. I have asked my GP to refer me to an different haematologist or even. MPN specialist I’m living in West Yorkshire so my nearest specialist is Manchester
It is important to sort out a few things to answer your question.
Macrocytosis (enlarged red blood cells) is an expected reaction to hydroxycarbamide (hydroxyurea). It is actually used by some docs to monitor compliance with the HU. In and of itself it is not necessarily a concern.
The symptoms you are experiencing are definitely a cause for concern; however, they may have nothing directly to do with the macrocytosis. Fatigue can result from either the MPN or from the HU. Asthenia (fatigue) is a very common side effect from HU. When did the fatigue begin, before or after the HU? The throbbing pain in fingers and toes is a common MPN microvascular symptom. It is not associated with your platelet levels, rather how your blood cells behave. HU might help with this, but aspirin will often help even more. Some people need to take aspirin twice a day to find relief. The random pains are reported by people with MPNs and may be from the MPN or from the meds used to treat.
Your platelets have dropped far below the target levels used for cytoreduction. Some docs continue to use "normal" (450) as the target even though there is no evidence that this reduces risk in any way. Other docs now use 600 as the target for cytoreduction. silvermpncenter.weill.corne...
Treatment for all MPNs are a matter of meeting the treatment goals to reduce risk and manage symptoms while minimizing the adverse effects of treatment. "Hydroxyurea is a highly toxic medication with a low therapeutic index." American Society of Health System Pharmacists. HU has a risk/benefit profile that needs to be considered in deciding to use it and to determine an appropriate dose. Note that this is true for all of our treatment options, including opting for aspirin-only. We do sometimes have to deal with adverse effects from the various medication we use to treat MPNs. Here is some information on HU for your consideration.
I would not venture to say whether HU is an appropriate treatment choice for you. That is a decision you need to make with your treatment team. You may wish to consider whether you are at an appropriate dose. Again, this is a decision to be made with your treatment team. These decisions need to be made based on your goals, priorities, and risk tolerance. It is your preferences that need to drive the treatment decisions. You also need a treatment team that listens to your concerns and is focused on dealing with the symptoms you are experiencing. The treatment team needs to include a MPN Specialist, not just a regular hematologist. If your current team does not seem to match this, then perhaps it is time for some changes to your treatment team. That is your prerogative.
Assertive patients receive higher quality care. Passive patients do not. I would encourage you to assert your right to have your very reasonable concerns addressed.
Thanks HunterI have asked my GP to be referred to a MPN specialist . My treatment team doesn’t include a MPN Specialist. I have a haematologist and a McMillan nurse and feel neither of them have much interest in my case. I will certainly shout loudly to get what’s required
Hi YBS, I agree with Rebecca about discussing a possible reduction in your hydrea. What dose are you on?
I have ET and am on hydrea. When I was first put on this medication my dose was one tablet daily. I was monitored closely, and when my platelets hit 288 my dose was reduced to one tablet five days a week. That was five years ago, I still remain on this dose and platelets are around 320-360.
Thanks for your reply. I was on 2 tablets every day then reduced to 2 tablets 5 days a week. I emailed my haematologist last night asking him the review my medication let’s hope he responds
I have exactly the same symptoms and the specialists cannot give me why this is happening necessarily either. Another sufferer suggested duloxetine, and that has worked well, however, there are days when my feet are humming when I first get up. I find walking works well, but don't overdo it. If you retain fluid I find that it tends to complicate issues. I cannot wear regular shoes with comfort. I also find my feet become easily abraided in shoes. If I can get away with bare feet is best, otherwise the most comfortable shoes without socks.
Fatigue is a big issue in my life, however, I retired a year ago and live alone. Simplifying your life helps. Be kind yourself, seek a quality of life rather than quantity.
Thanks for you reply. Yes I also retain fluid mainly ankles and lower leg and I have also found when I feel really poo my ankles are swollen. I drink lots of water and this helps so much. I have considered early retirement and have spoken to our pension advisor but don’t think I would get this and I’m not in a position to retire without my pension.
Here, in Australia, we have health insurance through our super funds which helps to cut hours or receive a payout. Enquire with a specialist solicitor who operates on pay when you receive a result basis, is the best way to go.
Edema is one of the common adverse effects of hydroxyurea. It would be another thing to discuss with your care team. Hopefully your new MPN Specialist will be able to help you sort all of this out.
Thanks I’ve asked for a specialist and live in hope. I emailed my haematologist last night asking for a review of my medication and waiting for a reply. 🤞
Your symptoms are something your heamo should try to minimise. I really hope you get answers soon.Regarding work is it worth applying for ‘PIPS’ if you live in the UK
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ET or PV with just a slight increase in red blood cells. Is that possible
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ET JAK2 positive
ET since 2001, now anxious about changes in blood counts
