I’m 65, female and I’ve been having blood transfusions and platelets occasionally since April and in mid-July I was diagnosed with Myelodysplastic syndrome ('MDS'). Apparently there isn’t an excess of blasts so it’s lower risk for Acute myeloid leukaemia ('AML').
I was diagnosed with Chronic lymphocytic leukaemia ('CLL') in 2010 and was treated with Bendamustine and Rituximab in 2016. Apparently the Bendamustine caused the Myelodysplastic syndrome ('MDS').
I’ve been told that I need a stem cell transplant and I’m waiting for Kings College Hospital to find a donor as my siblings aren’t suitable.
I’ve just started Azicitidine to try to relieve the transfusion burden, but after my first cycle I ended up in hospital with suspected neutropenic sepsis. My neutrophils are zero.
Is anyone else going through the same thing or have gone through this?
Hello @Sli, welcome to the Forum, though I’m sorry it’s all of this that has brought you here.
That’s a huge amount to have happened in a few months, so I hope you’re being well looked after and that things are feeling a bit steadier now.
You’re not the only one here who has been down this road. I’m going to tag @DuncanB, who had azacitidine on his way to a donor transplant, and @Evelyn61, who also has Myelodysplastic syndrome ('MDS') and knows what living with very low neutrophils is like. (@DuncanB and @Evelyn61, please don’t feel any pressure to reply, but if you’re able to share a bit of your experience I’d be very grateful.) You might also like to read Marky74’s thread; he has had azacitidine for Myelodysplastic syndrome ('MDS') this summer and is heading into a transplant this month.
If it would help to talk any of this through in the meantime, our Support Line nurses are there on support@bloodcancer.org.uk.
Keep posting whenever you need to, and do let us know how you’re getting on.
Take care,
Ceri - Blood Cancer UK Support Services
Thank you for taking time to send your post into the forum
I can see @Ceri_BloodCancerUK has left you a very kind response, and I echo her words.
I’m a Chronic lymphocytic leukaemia ('CLL') patient myself, albeit I am less than two years into the journey having been diagnosed in early 2025. My heart goes out to you, clearly it is a rough period for you.
Stray strong and please be assured we are always here for you
It sounds like a challenging few months for you @Sli
When I was initially diagnosed with Myelofibrosis I started on just Azacitidine with Ruxolitinib to reduce my spleen size.
Cancer then progressed to Acute myeloid leukaemia ('AML') and moved to intensive chemotherapy Flag-ida.
After that didn’t produce the results expected I went back to having Azacitidine along with Venetoclax and the Ruxolitinib for my spleen.
Carried on with this for another 10 months or so and got to a point where they were ready to do a donor Stem Cell Transplant.
It was an anonymous donor. Transplant April 2025 and 18 months post transplant in remission and the hope is that it will lead to a long term cure.
On the whole I coped well with Azacitidine. When I tended to struggle was when I had my injections late in the day on day 1 of each cycle.
I had regular Blood Transfusions although that changed when I started on EPO injections. Different brands used by different hospitals but basically all about boosting red cell count.
Like you, neutropenic so always wore a mask in shops and busy places. Still tend to do now as still waiting for immunity to recover.
Someone else at my clinic really struggled with the injections and I believe that she was moved to oral medication instead.
Hi! As Ceri mentioned I have severe neutropenia as part of my Myelodysplastic syndrome ('MDS'). I have had to stop working in reception and swimming because of the neutropenia. It’s not easy is? I just try to minimise risk factors and keep hospital updated if I am not well. My consultant in Maidstone gave me some spare antibiotics just in case I get another infection. I also have a card from Kings alerting people to my status, which I keep in my purse. If you don’t have one the CNS will give you one. Take care.
Also happy to answer any questions. My Myelodysplastic syndrome ('MDS') had progressed from 7% blast rate to around 15% within 6 weeks from initial diagnosis, I was having twice weekly blood and platelet transfusions with my neutrophils floating between zero and 0.3, my consultant prescribed me a combination of Azactidine and Ventoclax in August which put me in remission, went yesterday for my final blood test before transplant in a week. My HB was at 116, platelets 175 and neutrophils 3.3, I’ve been through vigorous tests to gear up for my transplant, Hickman line in on 15th, conditioning starting 16th and transplant day 23rd. Anxious is not the word but fortunately I am healthy and in remission which is a positive.
I know you will be anxious, and your life been turned upside down, but try to stay positive and obviously I do not know your full story, but two things I would now do, knowing what I do, is push for a second/third bone marrow biopsy to make sure this is not progressing and also push for the combination of Azacitidne AND Venetoclax,
if you have any questions, please reach out and wishing you all the best.