Hi everyone , still waiting for X rays on arthritis in my knees. Just seen the data on arthritis and Chronic myelomonocytic leukaemia (CMML). Apparently thirty percent of Chronic myelomonocytic leukaemia (CMML) patients can develop arthritis linked to the condition. Seems that steroid injections can be very effective and ok for Chronic myelomonocytic leukaemia (CMML) patients. I am still on watch and wait so I believe I’ll be ok with the steroid injections not sure what happens if you’re taking medication.
3 Likes
Hi @Unclejack Sorry to hear you’re still waiting for xray / results on your knees. Do keep us posted. My husband has arthritis in one of his knees, although I think probably due to a bad skiing accident he had about 40 years ago & not Chronic myelomonocytic leukaemia (CMML) related! Interesting your though. Makes me wonder sometimes what comes first.. the Chronic myelomonocytic leukaemia (CMML) or the arthritis! 
best wishes to you xx
2 Likes
I’m in Australia looking to support my dad with his recent diagnosis of Chronic myelomonocytic leukaemia (CMML). There is a phase 2/3 clinical trial here called PREACH-M that has reported promising results in achieving and maintaining complete remission in bone marrow for an extended time for people with TET2 and NRAS pathway mutations. Whilst it’s only running here to my knowledge, I believe the drugs used are developed in the UK, so I wonder if there is any recourse over that way for similar treatment options.
Thank you all for sharing your journeys, so great to hear people’s experiences to help get insight for dad.
Thanks
Kev
3 Likes
Hi Kev @krt2311 Welcome to the forum family 
Glad you’ve found us. I hope your Dad & yourself are doing ok with his recent diagnosis? It’s a huge amount to take in.
As you may have read, I’m supporting my husband who was diagnosed 15 months ago.
That’s really great to hear about the trial you mentioned! Please do keep us posted on it & how your Dad is doing. There are lots of great people on here who if I hadn’t met I’d be lost without ! @chrissy @Erica @Unclejack @logsie @lyndam Best wishes to you
5 Likes
Hi @krt2311, it’s lovely that you’re reaching out to support your dad - I’m sure having you in his corner researching and advocating makes a real difference.
I’m not a medical expert by any means, so I can’t comment on specific trials or whether similar treatment options might be available in the UK. However, I’ll ping our marvellous @BloodCancerUK_Nurses and our @ClinicalTrialsSupportService who may be able to offer some guidance.
You or he might also want to contact the Clinical Trials Support Service via our website (contact form at the bottom of the page), and perhaps get in touch with our Support Services who are really knowledgeable about navigating these kinds of questions and can help you think about what to ask his medical team. You can reach them on 0808 2080 888 or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
5 Likes
Hello @krt2311
Lovely to know you are supporting your Dad with his Chronic myelomonocytic leukaemia (CMML) diagnosis. I am sure that you’ll find plenty of tips, answers, suggestions and support from the small but wonderful C.M.M.L. group within Forum.
I don’t know if you have already been in touch with the Leukaemia Foundation in Australia, but they have some support groups too, you can read more about them here: LeukaemiaFoundation/support-groups You could ask if they have a Chronic myelomonocytic leukaemia (CMML) specific one.
Please don’t hesitate to get in touch if you think it would be helpful to speak to a nurse via the support line, or if you are also in Australia, you might want to contact Support Team - Leukaemia Foundation
Take care, Heidi.
4 Likes
Hello @krt2311
Thank you for highlighting the success of the PREACH-M trial. As you say, it is running in Australia but as far as I can see not the UK. Here is information found about it if anyone reading the post would like more details; a summary of what the trial involves Victorian Cancer Trials Link - PREACH-M, and this an overview of what the trial has shown to date SAHMRI | National drug trial shows early promise for treatment of… the trial eligibility criteria asked for participants with a diagnosis of Chronic myelomonocytic leukaemia (CMML) with RAS gene mutations. Lenzilumab isn’t available through the NHS for the treatment of Chronic myelomonocytic leukaemia (CMML) yet, but here’s hoping for the future.
Thanks & take care
Lynne
Clinical Trials Support Nurse
4 Likes
hi Sisi, I also have had arthritis in my knees for at least 20 years. So it was pre Chronic myelomonocytic leukaemia (CMML). Now using a tubi grip on right knee. This has stopped the sudden giving way of the knee, made a great difference to walking. Another plus point chillblains much better. Wearing gloves all the time even indoors and Sudocrem seem to be doing the trick.
Best wishes to all Unclejack.
2 Likes
Hi @Unclejack Great to hear your chillblains have settled down! And yes, my husband has used a knee support in the past. Definitely helped 
Touch wood 
his knee has been behaving itself recently. Best wishes to you 
1 Like
@Sisi @ChrissyD @Erica @Emma_BloodCancerUK
Hi everyone , just received results of my knee X. rays. Both knees have severe osteoarthritis severe effusion, patella, femur, and tibia. Can have steroid injections. But reading up on the efficacy seems these injections are short term and can damage the joint with prolonged use. Also there is a possibility that the injection can cause infection especially if neutrophils are low. My knee pain has improved since I wear a tubigrip and is only severe when standing up or sitting down. So I am very undecided whether to proceed with them. According to what I have read the injection needs to be timed to coincide with a decent level of neutrophils. So I assume blood test necessary to coincide with injection. I feel I am talking myself out of having them. Has anyone on the forum have any experience of steroid knee injections, would appreciate their experiences.? Perhaps just rely on the tubigrips for the time being. They have made a huge difference to pain and I am able to walk quite well at the minute. Also it seems returning to exercise is very important, so preparing to return to my exercise bike now the swelling is much reduced. Anyway I hope you are all feeling reasonably well.
Best wishes to all Unclejack.
P.S. I used to use Ibragel until Leukaemia diagnosis. With very low platelets I have not used it since scared of it making the low platelets worse. Only used paracetamol since.
4 Likes
Perhaps @Unclejack and all you have just shown another benefit of our support forum.
I sometimes find that just typing on our forum or putting pen to paper my thoughts and musings really helps me clarify my thoughts, like a pros and cons list. Also perhaps my decision is not set in stone, I can reassess the situation at any time (which my father would have classed as a weakness, is actually a strength). I find that takes the pressure off me.
Look after yourself and please do let us know how you get on.
2 Likes
Hi @Unclejack I haven’t had any experience of steroid injections so I’m afraid I can’t share any experiences but I’m really glad to hear the knee supports are helping Have you had any discussions with your consultant to discuss what they recommend with regard to the injections or your haematology team re the risks / benefits? From what I’ve learnt with arthritis, you’ll certainly benefit from gentle exercise. Although often that’s easier said than done when you’re in pain or discomfort! Wishing you a good weekend. Best wishes
1 Like
Hi everybody @Sisi @Lyndam @Logsie @CathyP @Unclejack @Alice48 @Pierre @Rick
Just seen these dates for 2026 Chronic myelomonocytic leukaemia (CMML) meetings by Leukaemia Care so pop the dates in your diaries. I’m presuming that if you registered last year you will get invitations automatically but if you haven’t registered before go to Leukaemia Care website, scroll down to Chronic myelomonocytic leukaemia (CMML) meetings and register.
2026: Feb 26th, May 21st, July 30th, Nov 12th
3 Likes
Thanks so much @ChrissyD 
1 Like
Hello Everybody
Here is an update on my situation in Spain. Symptoms are almost inexistant so good news, my blood counts were stable except for the platelets decreasing gradually to 65. So the biggest concern.
I am followed in my small regional hospital but around Christmas I went to a first meeting at the regional University Hospital to meet the specialized team. Was good to realise that my local hematologist and these experts work as a team.
A nice surprise was also to realise that Transplant (HSCT) is still an option and my situation quite good for that so there is some light at the end of the tunnel.
Now my situation is too good for a transplant but if I wait until my situation is too bad, it would decrease the survival possibilities. So we have to monitor the situation tightly and start to get ready for (HSCT) if or when we get there.
It won’t be an easy decision as HSCT is not a nice option. At this moment, I probably prefer to take the risk of an extremely difficult and risky year with a possibility to cure instead of a slow degradation of my health and quality of life. Not an easy situation for my wife though.
End of december, the 2 criterias to monitor closely were platelets and blast count. As long as they stay stable, we continue the wait and watch approach.
Last week, new blood results and the platelets which had gradually decreased from 100 to 65 in the last year, were back to 100, very good news as it was my worst criteria.
We will go on with research of a donnor, my siblings will be evaluated to be ready in case, but with the new results, probably nothing will happen in 2026.
Anybody in a similar situation? in preparation for Transplant (HSCT) in case you may need it?
Good wishes for 2026 to all
Pierre
Hi @ChrissyD Thank you very much for this, hope you are doing okay.
1 Like
A post was merged into an existing topic: Essential Thrombocythemia
Hi @Emma1111
So sorry to hear of your concerns over your treatment. You’ve posted on a thread about Chronic myelomonocytic leukaemia (CMML) so you probably won’t get much response as most people on this thread will suffer with low platelets rather than high.
I noticed another new thread about Essential thrombocythemia (ET) from @alix which might be more appropriate to post your query on?
Link here. And @Willow has sent a useful reply
1 Like
Hi @Pierre
Thanks for your update and so glad to hear that you’re doing ok.
Having a Stem cell transplant is a massive decision. I had my brother lined up as my matched donor but I’ve remained well for over 17 years with my platelets stabilising around 65 so now that I am 75 I would not choose to go through the Stem cell transplant as I’ve seen many people with long lasting Graft-versus-host-disease symptoms which have led to a poor quality of life. Your team at the regional hospital will be best placed to know when the benefits outweigh the risks of a Stem cell transplant in your case. If you look on the Myelodysplastic syndrome (Myelodysplastic syndrome (MDS)) UK website there is a very helpful video by Dr Beth Payne about how this decision is made and the potential outcomes.There are also 2 books published by Antony Nolan - called The Seven Steps and Seven Steps The next steps - which might help you with understanding the process better. Hope this helps.
1 Like
Hi @Lyndam
Following on from the UTI I had over Christmas, after 2 days on the antibiotic I was given to treat that, the awful IBS symptoms I was having for the past 9 months seem to have pretty much disappeared. It’s very puzzling as the antibiotic I was given supposedly only targets the urinary tract and yet it seems too much of a coincidence that this has happened? I’m still going ahead with the other tests the gastroenterologist ordered- the MRI (done and nothing alarming found) and the Bile Acid Malabsorption tests due mid February. It rather supports my theory that the Amoxicillin I had in April caused a bacterial overgrowth which has caused all my symptoms and yet was undetected by the standard tests I had.
I’m not convinced that the gastroenterologist I saw knows anything about this as he looked puzzled when I mentioned the possibility of a bacterial overgrowth - even though he prescribed a course of another antibiotic to treat that ? ( It didn’t make any difference).
Anyway, for the time being everything is a whole lot better and I’m not having to go to bed with pain killers and a hot water bottle every afternoon so all good ! 
Thanks for asking.
2 Likes