Supporting mum with CMML
Hello, I’m Suzi and new to this forum. So glad to have found this space. Have been supporting my mum since her shock diagnosis of CMML in November. After a horrible admission she got home just before Christmas and has been on azacitadine cycles. She looks quite good considering what she has been through. We are on a steep learning and live in fear of infections and COVID doesn’t help! I’m sure you understand.
Obviously life has changed dramatically. Lots of shock and grief. She is 73 but had been fit and is strong. Her doctors suggested a SCT despite her age and we had hope but some members of the team think it maybe too risky. Prognosis of CMML isn’t great either. Looking for some hope that a SCT might give her a better prognosis (am feeling overwhelmed by the risks and focus on risk). And CMML is rare and it’s hard to find information and stories of lived experience.
Hi Suzi and welcome to the forum. I'm one of the online community champions here and had a stem cell transplant for ALL in 2013. In fact it's coming up to my 10th anniversary of being diagnosed and thankfully I feel much like everything I went through never happened. I was 46 at the time of my transplant so quite a bit younger than your mum.
I'm really glad you've found the forum and that it is helping you and I hope we can give you some assurances. There are many here who are patients who have had or are going through treatment and transplants, or are relatives like you supporting a loved one go through the process.
I can't give you any insight into CMML though I understand it does affect older people. I don't know what the statistics are regarding treatment and stem cell transplants but I would guess that your mums medical team will be assessing her suitability for transplant in terms of her existing health and fitness, any underlying issues that might increase her risk of complications or recovery, and balance those against the benefits she will get from a STC. If the risks are too great, there may be other options to treat the effects of the Leukaemia.
There may be others here who can give you a better insight into CMML or a STC at your mums age. The Anthony Nolan team, particularly Rachel the lead nurse may be able to give you more background information, though those best placed to decide on the treatment route would be your mums medical team.
Hi @Suzziqqt - I'm Claire from the Patient Services team at Anthony Nolan. I'm so glad that you have found the supportive community of the Forum, and sorry to hear of what you are going through at the moment.
As @Dieseldrinker62 says, you may wish to speak with Rachel our Lead Nurse. If so, please do feel free to get in touch with us on 0303 303 0303 (Mon-Fri, 9-5, excluding Bank Hols) or by emailing firstname.lastname@example.org; we can arrange for you to have a call with her.
I also wanted to share some information with you about our Telephone Emotional Support Service, which you might find helpful at this time. This is our free service to support both stem cell transplant patients and their family members, provided by a team of wellbeing specialists including qualified psychologists, with years of experience in providing support for stem cell transplant patients. You can find out more here: https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support. If you or your mother decide you would like to be referred at any point, we would be very happy to do this for you - just email us at email@example.com.
I hope this helps.
All the best,
Hi Suzi. I was diagnosed with CMML at the end of 2020, aged 66. Up till then I had lived a fairly active life. I had 6 rounds of treatment with azacitadine, then a SCT in August last year. At the moment I feel very well, and have slowly returned to walking, golfing and other activities.
The treatment pre-SCT was at times tough, but I managed to avoid infections. We were very careful. My wife has certainly had a rough time and carers need a lot of support and help for sure.
I am happy to answer any questions you might have from my personal experience. I know it has helped me to talk to people further down the treatment road. Everyone is of course different but you aren't alone for sure.
Please don't hesitate to get in touch at any time.