Please read the house rules and keep this community safe for yourself and others.
EPO
Have just acquired a new hill to climb. Anyone had this treatment? It has been mooted on a few occasions and they are now moving towards using it for my husband's persistent anaemia, etc. I wonder how you found it? As always the possible side effects are terrifying but then aren't they all!?! He's 20 months post-allogenic SCT. Thanks. Mel
Answers
Hi Mel,
I must admit I had to google EPO treatment as I hadn't heard of it and haven't any experience myself. From what I can see its a course of injections to stimulate the bone marrow to produce red blood cells which will hopefully help his anaemia.
As with any treatment there is always a long list of possible side effects, but then again there is with Paracetamol but we all still take it. Your husbands medical team must weigh up the potential benefits against the risks when thinking about the treatment, so they must be thinking it will be helpful. I guess when he has the first injections he will be monitored closely and if there are any concerns they can be addressed. I assume they will also monitor his bloods closely to see what effect it is having and whether it is working, then adjust the dosage accordingly.
Hopefully someone on the form may have had the same treatment and can give you some insight, or someone from the Anthony Nolan team can give you more information.
How is your husband apart from the Anaemia, is he doing ok otherwise?
Regards,
Steve
He's doing well thanks, Steve. There remain limitations on his activities - cognitive and physical but we hope this new suggestion will help on both fronts. We expect some thing to remain relating to his kidneys, gut and skin [and, I suspect, some cognition difficulties] but we're grateful for every day we share. It's just hard sometimes when some new 'thing' crops up as it does periodically [like this] and our routine/thoughts/plans etc have to be rearranged. It's like rearranging the furniture - hopefully for improvement, but discombobulating just the same!
I hope you are keeping well [I believe you went back to work okay?].
Best wishes, Marion.
Claire here from the Patient Services team. I'm glad you have found the supportive community of the Patient & Families Forum. As Steve states, if you would like to have a chat with us, feel free to get in touch - you could have a chat with our Lead Nurse if that is helpful. You can reach us via the Helpline on 0303 303 0303 (Mon-Fri, 9-5), or email us at patientinfo@anthonynolan.org.
All the best,
Claire
Hi Marion, you're right I've been back at work some time. I had my transplant just over 9 years ago and returned to work fully probably 18 months afterwards, having worked from home on light duties from about 6 months after my transplant. With Covid over the past couple of years I returned to home working whilst the advice was to shield, even though I'm probably at lower risk than more recent transplantees, but have been back in the office full time since the middle of last year. I take lateral flow tests regularly and how I've managed to avoid catching it is beyond me when so many of my colleagues around me are testing positive regularly.
As far as limitations after transplant are concerned I think we all find that we have new limitations that we have to adjust to, and I certainly have physical and cognitive changes, possibly not as severe as your husbands case. I definitely get tired more easily, get out of breath more easily, and find concentration more difficult. I have memory losses and I struggle with speech sometimes in terms of forgetting words and names, which I blame on chemo brain. These are limitations I've learned to live with and refer to it, as others do, as the 'new normal'. I guess at 20 months post transplant you're still going through the adjustment phase and fingers crossed things will stabilise to his new normal.
If a lack of red blood cells is helped by the treatment that might help reduce some of the physical issues, and should certainly help with giving him some energy if it can kick start his red cell production.
Like you. I'm grateful to be still able to share my time with my loved ones, friends and colleagues, particularly when I consider what I expected the outcome would be when I was first diagnosed. I try to enjoy life as best I can and I don't get stressed about things as much as I used to. An experience like we've all been through gives you a new perspective on life and helps you to value those things that are important.
Like Claire, I'm glad you're using the forum for support and as she notes, if you do need more direct support or advice the helpline is available if you need it.
All the best,
Steve