Meds queries

[10061950]

Has anyone noticed any difference with their red blood cell count whilst on Hydroxycarbamide ?

I’ve just had a phone call from my nurse , saying my red blood cells are low 116. and she said she would be happier if they were around 100.Thanks

[hunter5582]

Hydroxycarbamide does affect red blood cells in several ways, increasing decreasing the total number. Not sure about the numbers you are quoting. Suggest calling back and asking for a more clear explanation. Include asking about the reference range for the labs in question and what the therapeutic target is.

I believe that you have ET - with MPL driver mutation. If that is so, RBCs would only be a concern if they got too low. Anemia is a side effect of Hydroxy.

Numbers cited in the 100s are often platelets. Reference range for platelets varies by lab, but can broadly be 150-450. If it is your platelets that are 116, that would be too low. That by definition would be thrombocytopenia. This is considered a serious adverse effect from hydroxy. Your doc would not want your platelets to be at 100. I expect the numbers being cited were not platelet numbers. Would definitely get this clarified.

Hope you get answers soon.

[10061950 in reply to hunter5582]

Hi Hunter 5582. Thank you for getting back to me.

The nurse definitely said it was my red blood 🩸 that was 116 , my platelets are 317 . I did try and get back to her but the clinic is closed till tomorrow .i will try again tomorrow but I am also going next week to see the mpn specialist at Christie’s. Fingers crossed 🤞 he will explain everything to me.

[hunter5582 in reply to 10061950]

Outstanding that you are seeing the MPn Specialist! That is the best place to get answers.

[10061950 in reply to hunter5582]

Hi Hunter, Yes I cannot wait now till I see the Professor.

I’m a bit nervous 😬 but he is the one i hope that can answer my questions. Thanks again for getting back to me.

[hunter5582 in reply to 10061950]

Suggest getting a hard copy of the labs or access it on the patient portal. That will often help answer your questions.

[nightshadow]

My red blood cell went down as well and is lower than optimum range. But as Hunter says, that is a trade off for the keeping the platelets down to safer levels. (I have ET JAK2). The numbers you quote though don't make sense for an RBC count, it should look something like 4.40 10e6 cells/mcL - 5.20 10e6 cells/mcL, unless I misunderstand what you mean by red blood cell count.

[10061950 in reply to nightshadow]

Hi nightshadow, Thanks for your response,

I don’t understand my blood reading either, I tried to call my nurse today but I was told she isn’t in today.

I’m seeing the Professor at Christie’s next week so I will wait and see what he says.

[FXT1966]

Professor at Christies is great . He has helped me a great deal.

[10061950 in reply to FXT1966]

Hi FXT1966, Thanks for your response,

I’ve heard a lot about the Professor .

I just hope he can help me.I’ve got ET MPL .which I am told is very rare.

So hopefully 🙏 he can explain things to me.

[ciye in reply to 10061950]

I have et with mpl and neither hydroxy or Pegasus is getting my platelet count down.

[10061950 in reply to ciye]

Hi ciye,When did you get diagnosed with ET mpl ?

I was diagnosed in August last year. My platelets, then, were 1000, and now they are 271.

I take 2 tablets for 5 days and 3 at the weekend,

But I’m getting a lot of side effects from them

Really bad fatigue

Headaches

Cramps in my legs

Being sick

Nosebleeds.

[ciye in reply to 10061950]

I was diagnosed in March 2020. Had the same side effects +breathlessness and sore mouth.Following switch to interferon my platelet count has risen., The breathlessness and fatigue are still a huge problem, the latter hasn't been helped by having lower lobe of right lung removed, but that was an issue prior to surgery

[10061950 in reply to ciye]

Hi ciye, Like yourself I had 1/3rd of my right lung removed in 2021.

I also had breast cancer in 2019

both caught early, and now this.

I’m going to see a Professor at the Christie’s in Manchester next week hopefully 🙏 he will be able to give some answers on this condition.

.

[ciye in reply to 10061950]

How did you get a referral to Christies, through haemo or gp. I have asked to but that was months ago.

[10061950 in reply to ciye]

Hi ciye, I asked my Gp if she would send me for a 2nd opinion to the Christie’s. The Professor I’m going to see is Professor Tim Sommervaille.

I only found out about him on this site, quite a lot of people have seen him and said that he is fantastic.

So personally I would say to your Dr that you want a 2nd opinion and make sure your dr puts 2nd opinion, I was told this is important otherwise I think you would have to wait quite a while.

Good Luck go for it.

[ciye in reply to 10061950]

Thank you

[10061950 in reply to ciye]

No problem, I hope you get to see the Professor or a specialist.

[FXT1966]

He will explain things , he is very through, and has a good network of other professionals. Good luck.

[10061950 in reply to FXT1966]

Thank you.