My partner is 32 and taking 2g HU daily for ET (triple neg). It’s quite aggressive and he can’t take anagrelide as he has already had a heart attack caused by the ET.
His platelet counts are within a good range now (and red is fine) but his Neutrophils are super low and he has quite bad neutropenia due to the medicine.
They are reducing his medicine a bit to see if it helps.
Does anyone have experience of managing neutropenia? Is there anything we can do to protect him or encourage them to recover?
The Haem was quite blasé about it but his count is at 0.6 which seems quite bad?!
Hope someone has experience here...
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intothewoods
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Ah sorry to hear that about your partner - it's always hard to manage our "other" counts that are effected by our treatment while keeping the counts we want lowered in safe levels. I have triple neg ET had 13 years on Hydroxy 2,3 or 4 capsules a day at varying times in those years and yes always have had low neuts - I have been on Pegasys interferon since November and whilst my platelets are lovely safe levels those neuts are still too low - I hover around 1.1/1.2. I do appreciate your partners level is particularly low. I use lots of things in my diet to assist immunity blueberries, green tea, peppers, tomatoes, oats, walnuts, almonds, lots fresh steamed veg - well all the usual things I guess but I religiously eat them daily (altho I hasten to add I still love a coffee and Danish pastry!!) and it has helped me over the years, also good exercise in walking, using hand sanitiser always one of those in my handbag. I also make it known that my immune system is challenged - I work in a big open plan office all my colleagues know my problem and whilst it took a while to get the point across they are all very considerate when having colds to keep away and I use gels a lot if someone is not so well near me. I am vocal with friends too and will walk away from social things is someone turns up full of cold, it's worth doing and also people start to realise you do need help in keeping well. Also using gloves when gardening and handling things as if neuts are low bacteria is something to be aware of, look after any cuts and such like. Your partner will find too a tweak of the dosage will help just one or two capsules less in a week can help pop up the neut levels and if your partner can get over a count of 1 that would be good, just keep plugging away with the consultant about it. I first had bone marrow problems in the 1970s when I was 17/18 and my problem then was - yes my neutrophils - so I know my "normal" level was always on the low side so treatment on top then gives a particularly low count and it may be that was true for your partner prior to diagnosis. Wishing you both all the best.
Thank you so much. That’s really helped put my mind to rest. I will pass on your advice! Luckily our toddler is obsessed with blueberries so we’re pretty well stocked there
I would wonder about another medication like Jakafi or peg-Interferon and whether your partner would respond better to one of those. HU is generally not recommended for those in the age 32 (low risk) set due to the side effects profile. However, given that this sounds like high-risk ET based on what you indicated, chemotherapy would certainly make sense. I am not aware of any of the meds that reduce hematopoiesis that selectively target platelets. All blood cell counts tend to be reduced. We all respond differently to these meds, so perhaps there would be something your partner would respond to better.
If your partner does stay on HU, there are some things to be aware of. HU is teratogenic (causes birth defects), so it is essential to avoid pregnancy while on it. Women must wait 6 months and men 12 months post-HU to have children. HU passes into semen and vaginal secretions, so condoms are recommended to protect the partner. Women of child-bearing years not on HU should not even touch the bottle without wearing gloves.
HU is also mutagenic, carcinogenic and potentially leukemogenic (controversial and not all believe the latter). There are a host of other potential adverse effects both in the patient education literature and in the emerging research. Having said all that, ALL of the chemo-drugs have potential adverse effects. You have to weigh the benefits of the meds against the potential problems. Having a heart attack due to uncontrolled platelet levels by age 32 is a really major adverse effect of no chemo, so clearly something needs to be done.
Docs often seem blasé about our concerns, which sometimes gets me really riled up. If you have concerns, the docs should take them seriously and address them with you. While we have to work with our docs, our docs have to work with us too. I have found that assertive patients receive higher quality care. Passive patients do not.
Just reread and saw the triple negative part. Jakafi would make no sense since it is a JAK-inhibitor. I expect that peg-interferon would be considered off-label use for trip-neg ET, but might be worth asking about.
Thanks so much for all the info. Yes I think interferon might be on the cards if we can’t get the hydroxycarbomide working. Haem not keen due to side effects and interactions with other health conditions though - sigh! I sure know how to pick em....
You might consider getting a second opinion. Many hematologists do not know much about MPNs due to their rarity. Here is a list of patient-recommended MON expert docs mpnforum.com/list-hem./ . I actually have two hemo-docs - one who is local, but not an MPN expert, and a consultant MPN expert who I travel to see as needed. Definitely worth the time and expense to get expert input.
Thank you! We live in London so our haem has been running the tricky decisions past Clare Harrison at Guys. We will probably end up being referred to her directly if all else fails!
I've had experience of low neutrophils due to treatment suppressing the blood count. I am 48 & have ET. I'm on pegasus (interferon injections). It is a juggling game trying to keep the platelets down & not suppress other counts. The Haematologist seems happy to let the platelets run a little high to keep the white cell count & neutrophils up. Periodically I come of treatment to let them reboot.
I have restrictions at work through Occupational Health if the neutrophils go below 1. I've not been I'll when they have been low, thankfully. My understanding is that we naturally produce interferon which protects us from infections & by taking the treatment it will help my immune system around virus'. Where I need to be careful is around bacterial based infections.
My neutrophils hover around 0.5/0.6 most of the time. My haematologist does not show ant particular concern about it. He has a particular interest in MPNs and a hotline to Prof Harrison who sees me once a year. I have done some reading about neutropenia and the neutropenic diet appears to be quite controversial. I don’t really take any particular precautions except I don’t swim any more and I’m a bit more fastidious about hand washing and washing fruit and veg. I tend not to mix with big crowds and my GP has said I should ask to sit and wait in a separate room when I have an appointment. (I just worry they will forget me there!).
I do know that I have to go to A&E immediately if my temperature goes above 38*C and insist on being seen ASAP. This has happened once so far and the hospital were good about it. Other than that I live life as it comes and mix with my grandchildren as often as I can. I hope your partner is able to increase his counts somewhat to reduce the risks. I have post ET MF and take Jakafi but spent many years taking HU.
With the neutrophil count so low, he’s just totally exhausted and sleeping all day so we need to find a way to get them up. The fatigue was bad before but this is pretty unmanageable!
Hi there. I am 66 and have been ET triple negative for 14 years. I was on HU for 13 years and for the last 3-4 years my neutrophils started dipping dangerously low. My hematologist would call and tell me to completely stop HU for 10 days or two weeks and have another CBC done. Once the neutrophils recovered i’d restart the HU. The two week HU break did not affect my platelets very much. We kept repeating the process until after 13 years HU stopped working for me. I’m now on Anagrelide. The pounding heart palpitations are scary and there are other nasty side effects but few options left now.
Good luck to you and your partner. I hope HU continues to work and that your heam can juggle the dosage to keep the neutrophils in a range that keeps your partner infection free.
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