Reticulocyte count

Stuart2412

Hi my name is Stuart I have mpn which is a blood cancer I also cannot walk because I have fnd am in a wheelchair due to when I try to walk my legs start shaking I am now having a injection called alpha2b I had my bloodtest today and my Reticulocyte count is high which means my red cells are being destroyed so things are bad and is messing my mental health up bad any advise

Rosie_Scope

I'm really sorry to hear you're having such complex health issues @Stuart2412, it's never nice when it's just one thing after another. Has your medical team been able to suggest anything to help with your issues?

It can be really rough keeping your mental health up when your physical health isn't doing too well. Do you get any mental health support at the moment?

MPN Voice have some pages about coping that you might find useful if you haven't already seen them: https://www.mpnvoice.org.uk/living-with-mpns/your-state-of-mind/

I hope the community can be a supportive place to be too. I'm sure lots of our members understand how horrible it can be.

MCMikey

I hope someone else who is more knowledgeable and/or more aligned with your condition can speak out and help.

On the injection, i think you need to speak to a professional to decide wether the side effect(s) are worth persevering with in order to achieve its longer-term beneficial goal.

Best wishes

figraspberry41

#@stuart2412

Hi Stuart,

I am very sorry to hear about your condition, it is not a particular condition that I am familiar with. I have had some of similar conditions as I was a Community Nurse for sometime. Rosie's suggestion is probably a good place to start, if you have not done so already. Have you been signed a McMillan or Specialist Nurse that may be able to offer more support or at least point you in the right direction? Your mental health and well being are as important as you coping with this condition, so perhaps a chat with your GP who should be able to suggest or offer you access to a Mental Health Team, however, it still may take a few weeks to get an appointment. Also, if you are having difficulty getting an appointment with your GP try asking the surgery if there is a Community Practitioner, who also should be able to put you in touch with a Mental Health Team or other people who may be able to support you through this.

It can be very difficult to decide whether or not to continue with treatment choices, I can appreciate this dilemma, from my own personal experience (but not with injection). Sometimes the side effects create more issues with side effects which make it more difficult to decern which benefits out weigh the negatives of the side effects. In the end only you can decide what you feel is the 'right' thing for you but before you make any 'rash' decisions, please try to find out more information about the treatment and if there are any alternatives that may have fewer side effects (or at least side affects that you can 'live' with).

I hope this may be helpful to you. Good Luck!

MW123

@Stuart2412

Hi Stuart,
It is important you speak to your haematologist or oncologist about what you are experiencing. A high reticulocyte count can mean your body is working hard to replace red blood cells, but the cause needs to be understood, whether it is linked to treatment, disease activity, or something else. You should not have to carry the uncertainty alone, especially when it is affecting your mental health. They can help clarify what is happening and adjust your care if needed.

I live with blood cancer, myelodysplastic syndrome, and in just a few years I had more than 365 transfusions. I know what it is like to live with depleted red blood cells, struggling to put one foot in front of the other, fighting to stay awake, but it is futile. Your body puts you to sleep. It simply shuts down. It is a deeply exhausting and often isolating illness.

My oncologist explained that when I fall asleep at unexpected times, it is my body preserving the major organs. In MDS, red blood cells often undergo oxidative stress and eryptosis, essentially self-destructing before they can function properly. So even before blood counts drop on paper, the cells are already failing. When red blood cells are critically low, oxygen is rationed. The heart, brain, and lungs get priority. Everything else, including muscles, energy, and alertness, is quietly switched off.

Although MDS and MPN are distinct, they share many symptoms. Both affect blood cell production and can cause fatigue, anaemia, and breathlessness. Some conditions even overlap, so while the diagnoses differ, the lived experience often feels remarkably similar.

I saw some members recommending you contact MPN, and that is a good starting point. You will be speaking with people who truly understand what you are facing. I am a member of the MDS Support Group and found it really helpful. I am not sure how the MPN groups operate, but when I joined MDS, I had to wait while they verified my diagnosis before membership was approved. Once in, the support was excellent. It was a refreshing change to connect with others who had lived experience, and that made a real difference to me.