I have just completed my first round of blood tests (fortnightly) and my first consultation since my diagnosis, thankfully the platelet count seems to be decreasing but the white cell count is also going down 😉 I have another blood test etc for 4 weeks time but I’ve received a call from my Dr surgery who was concerned about this and made me feel quite anxious now, I’m not sure why he called as I am now under a consultant at the hospital 🤷♀️
Would anyone know if the white cells start to even themselves out along the way ?? As I’m worried about them dropping too far and getting Poorly with other things !
Thanks
Wendy x
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Yoganana1
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Hello Yoganana1, perhaps you could call your GP back and ask for further clarification and explain that you are anxious about it, or perhaps put a call into your haematology nurse specialist for some advice. Best wishes, Maz
Please do as Mazcd suggests and call your hematology office for a clarification and some reassurance. Unfortunately it is very common for a GP office to not be familiar with MPNs and their treatment. Seeing a decline in WBCs (leukocytes) would normally be something they would be concerned about, particularly if they do not know the context for your treatment for ET.
Hydroxycarbamide (hydroxyurea - HU) is an antimetabolite medication that interferes with the DNA activity of hematopoietic stem cells (HSCs). HSCs are the progenitors for all types of blood cells - platelets, red blood cells (erythrocytes) and WBCs. HU is not selective in which type of blood cell production is suppresses. It can suppress all three of the blood cell lines. We each react a little differently to HU and the other meds used to treat MPNs.
One of the intrinsic risks of HU is a depressed white blood cell count. This is not unexpected. It is the reason you are not supposed to take live vaccines while on HU. It is possible for your WBCs to become so depressed that you develop leukopenia. However, there are various degrees of leukopenia. Most people can tolerate mild leukopenia. Also note that there is more than one type of white blood cell. It does matter which type of WBC is being suppressed and by how much. Two WBCs the docs particularly like to watch are neutrophils (antibacterial) and lymphocytes ( anti-viral). Generally the docs will be OK with a mild level of neutropenia or lymphopenia as your body can still fight off infections. It is only when they drop below a certain level that the docs become concerned.
FYI - my treatment for PV with the interferons (first Pegasys then Besremi) has caused mild lymphopenia. I also hover on the edge of neutropenia. The meds are doing an excellent job controlling the thrombocytosis and erythrocytosis. I have had no other adverse effects. We do monitor the suppression in WBCs, but plan to continue my treatment at the current dosing. In my case the trade off is worth it. Note that I did try HU, but could not tolerate it. The IFNs are a much better choice for me.
This is the core thing to understand about treating MPNs. We always have to do a risk/benefit analysis for each of our treatment options. We each respond differently to the medications used to treat MPNs. We each have our own treatment goals, risk tolerance, and preferences. Individualized MPN care provided by a MPN Specialist is the key to success. The other key to success is to understand our MPNs and the choices we have to make.
Here are a few resources regarding HU you may find helpful.
Thank you Hunter, It all seems so very confusing to start with doesn’t it, the Hydroxy seems to be doing a good job on the platelets and I seem to be tolerating it well so hopefully everything will work out ok 🙏
I spoke to the hospital and they told me GP’s tend to panic slightly as they don’t have the experience with this and only look at one part, therefore I’m hoping the WBC won’t drop too low but will have to wait now until my next blood test…. I just hope they have a plan in mind for this if it happens
There is a lot to learn at first. The good news is that you will have plenty of time to learn what you need to know. This forum is an excellent place to be for support and information.
What the hematology office told you sounds spot-on. All you can do at this point is to stick with your treatment and see how it goes. The good news is that if HU does not work for you (as it did not for me) then there are other options. PEGylated interferons (e.g. Pegasys, Besremi) are the other first-line treatment option for ET. Some tolerate/benefit from it better than HU. There are also second-line treatment options like Jakavi and anagrelide. You can have confidence that you will find the right treatment plan for yourself.
Thank you so much for your reply, you seem to have so much knowledge on this and I have so much to learn ! It is a blessing to have found this forum and it gives me comfort to be able to ask these questions and get sensible answers during this early stage of this condition
My experience was that my white blood cells remained stable, but the red blood cells and platelets levels decreased, but at varying rates, so that even though I am barely below the range red blood cells it is not enough to cause anemia. Are you below the range for white blood cell count? If not it may level out with in its range by the time the platelets get low enough
Oh thank you, my platelets have gone down a lot to a high normal level but my white cells have gone down also to just below the bottom in normal level, I kept getting asked if I feel well, have a fever, temperature etc 🤷♀️ This makes me feel quite anxious about it for some reason like they are expecting me to become unwell?
The hospital did mention that hopefully the white cell count will get used to the meds and settle down but the next blood test will be the one to see what’s happening there, it’s early days for me and maybe I’m worrying unnecessarily??
It’s the unknown that seems to send the anxiety into action !
Generally speaking having platelets at high normal and whites just under the lower level is usually ok. It is of course best to discuss that with your Haem or Haem nurse.GP,s have only basic knowledge on such matters so no harm in listening to their comments but it should be your Haem that you you take the main info from. Prob also useful to discuss here but try to give as much detail as poss to get best opinions ie actual counts, dose of meds , age , symptoms etc.
Keep cool, you will soon gain knowledge and experience 😀
Reactions to HU are very idiosyncratic, so it takes a while for you and your doctors to know if it is a good match for you. Might be a good idea to continue to wear a mask in public even after the mandates in your area have dropped (if they haven't already) until you get your next test results. But if you are not experiencing colds or fevers or infections at a greater rate than your norm it would seem your white cell count is sufficient even if a bit low.
Thank you, yes it’s definitely worth thinking about, everyone seems to be back to pre covid here and not a mask to be seen 🤷♀️ So I will have to try to be more careful I think until I get my next results
Don’t worry, unfortunately all the blood components are affected when you take your meds, that’s why careful monitoring is required. I Always get a copy of my blood tests so I can discuss when required. I think it’s good your surgery have flagged this up. It may mean your dose needs to be altered nd your next appointment needs to be brought forward. Good luck keep us informed.
Here is a plot of my WBC with just over 1 year of HU treatment. The lowest point was just before I reduced my dose from 1000 to 500/day. In my case it did stabilize.
If certain of your numbers are going too low you should discuss your dose with your Dr. Of course other numbers like PLT may dictate holding a higher dose.
Thank you for that info, hopefully it looks like mine might stabilise then once things start to settle down a bit 🤞I am on 500 once a day at the moment so not sure where they will go with that one?
It’s so helpful to hear other peoples experience though as it does help to settle my mind
I have another consultation with blood tests in 2 weeks so see what happens then , really hoping it might have settled a bit
It is not unusual to have a dose less than 500/day. It can be for example every 3rd day is none. There are some members here doing that. It's often measured as mg per week rather than per day. Also there are hydrea pills at 200, 300, and 400, although they may be more costly.
So it is an option to reduce your dose if you and your Dr agree there is a reason to do so
Oh really, I am still learning about this and they told me I was on the lowest dose ? So wasn’t aware it could be any lowerHopefully it may be an option then but I will just need to wait & see what the next blood test shows and then hopefully discuss with my consultant as to where we go with this
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