Hi everyone, huge apologies for not reply to you all sooner, I am going from bad to worse here! But thank you so much for all of your responses regarding my reaction to the Covid and Flu jabs. I was poorly for about a week and then thank goodness it wore off! I am still left with all of the other symptoms though which are definitely getting worse! I have appointments lined up at Geriatric Medicine, Rheumatology and the Myeloid Clinic, all in November so I am hopeful that I will get some more advice and support and especially pain relief!
Also thank you Chrissy for the heads up on the Zoom meeting on 13th November. I have signed up for this so I will see you there. My husband will be joining me for hand holding and asking questions when I can’t string a sentence together!
I hope all of you are as well as can be expected and thanks once again for your amazing support!
So sorry to hear you’re still struggling with pain. That’s so horrid. Hopefully the various appointments will come round soon and you might get some answers and help with the pain.
We look forward to seeing you and your husband at the meeting on 13th.
Hi @CathyP Best wishes for your appts coming up. I hope you can get some help with pain relief soon. Look forward to seeing you online on 13th. I’ll be there with my husband, who last time was adamant that he’d be happy to talk & then when it was his turn suddenly became quite emotional & found it difficult. Although he does get emotional whilst watching The Repair Shop….! so I was happy to help him. We’re a friendly bunch & it’s great that we’ve got the opportunity to share & help each other. It’s been a huge support for us.
Thank you Sisi, you did make me laugh at The Repair Shop comment. Doesn’t everyone get emotional watching that?! My husband cries when we watch any sort of programme on TV about children or animals suffering, the rest of the time he pretends he’s grumpy and hard as nails!
Hi all, so yesterday I had my 3 month blood check at the Churchill Hospital in Oxford with Dr. Alex Sternberg and was told that the results were slightly worse than they were in August (not sure in what way, I will have to request a printout of the results) but not as bad as they were in May. We had a chat about my ongoing joint pain which Alex didn’t think was linked to the Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) directly but it was difficult to be sure but we are hopeful that the steroid injections I have on the 25th November will make a huge difference to the pain. I mentioned the Zoom meeting we were having on 13th November with Dan Wiseman and he was delighted to hear about this, saying that Dan was “a very good friend” of his. He was very supportive and hugely informative and I felt very optimistic after seeing him.
Thank you so much for posting and for your incredible fundraising efforts! It’s fantastic to hear that you want to raise money as a result of the support you’ve had on the forum and from our wonderful @BloodCancerUK_Nurses . Congratulations on almost reaching your fundraising target, we are so grateful that you are supporting our work in this way!
As the main purpose of the forum is for peer-to-peer support, unfortunately, this isn’t the right place for sharing fundraising requests. We’re also mindful about keeping everyone’s personal data safe, and so, recommend that people don’t share their email addresses on this open platform in our terms of use.
If it would be helpful, I am sure a member of our friendly Supporter Relations team would be very happy to talk to you about how you can spread the word and reach your goal. You can get in touch with them by calling 0808 2080 888 (option 2) or emailing hello@bloodcancer.org.uk. I can also pass on your details, if this is something you’d like so will message you directly to follow up.
Thank you once again for supporting the charity and sharing your experiences of our support services!
All sounds good from your recent blood tests. It’s certainly a good idea to get all your blood tests on paper -or does the Churchill have an online patient system where you can look at all your results? You may not want to go as far as this but I keep a spreadsheet of all my results so I can spot any trends. Thankfully, everything has been very stable for 17+ years!
I hope the steroid injections will help with the joint pain. How are your other issues - menopausal night sweats (?) and the awful digestive problems? You are certainly being challenged on many health fronts and I really feel for you.
Looking forward to seeing you at the meeting next week.
I was diagnosed with Chronic myelomonocytic leukaemia (CMML) last month and have just joined the forum. Please let me know how I join the Zoom meeeting on the 13th November.
So sorry to hear of your diagnosis of Chronic myelomonocytic leukaemia (CMML) but you’ve come to the right place for some great and friendly support from people who are living with the disease. Hope you’ve managed to find all the info I’ve previously mentioned?
Re the meeting next week, go to the leukaemia Care support website page and scroll down until you find the Chronic myelomonocytic leukaemia (CMML) Group. There’s a link to register for the next and all future online Chronic myelomonocytic leukaemia (CMML) meetings.
Thanks for this, I have just registered. It’s really good to find a support group. I’ve watched a few of Dr Wiseman’s presentations. I hadn’t previously been aware that there are so many potential adverse effects of Chronic myelomonocytic leukaemia (CMML). I’m relatively well at the moment and am learning to cope with fatigue.
So pleased you’ve been getting yourself informed and supported. It really helps to know you’re not alone. There are so many variations in symptoms of Chronic myelomonocytic leukaemia (CMML). It could almost be different diseases! Sorry to hear that fatigue is one of yours. Lots of strategies to manage fatigue so take a look at the websites of BCUK, Leukaemia Care and Myelodysplastic syndrome (MDS) UK. And don’t push yourself too much!
I have reached rock bottom here. Just in the last week the joint pain has reached my neck and the knee pain is ten times worse, I have no idea why. The neck pain is causing a shooting pain up the back and across the top of my head and it’s non stop. I’ve not slept and I can’t do anything at all really, typing this slowly lying down in bed on my phone. I have emailed Geriatric Medicine who are overseeing all my symptoms but not sure what to do in the here and now. They told me to double up on my paracetamol dose but it’s not touching it and my stomach problems have flared up again so I’m not eating, not sure if because of double dose of paracetamol or just it is what it is. I can’t go on like this. It’s been so fast and so intense, I can’t do anything without help. Feeling pathetic and desperate.
Oh my. I feel so sorry for you with all the pain you are in.Looking back at your posts, you said you had an appointment for steroid injections on 25th November so I’m hoping that these help to relieve the pain you are suffering. Only a few more days.
I think it’s really important to determine whether the joint problems are linked to the Chronic myelomonocytic leukaemia (CMML) as this might affect how it could be treated? Despite what your consultant says, we know that bone/joint pains can be caused by Chronic myelomonocytic leukaemia (CMML). I’m not sure if you’ve said what type of Chronic myelomonocytic leukaemia (CMML) you have ? Do you have a very high white cell count or a low one? Are you on any treatment for Chronic myelomonocytic leukaemia (CMML) or still on active monitoring? Have you ever been told you have an auto immune disease? Maybe one of your clinicians should bring your case to a Multidisciplinary Team meeting to share expertise? And include a gastroenterologist too? They should certainly be taking a holistic approach and not dealing with your vast range of symptoms separately in their specialist silos?
Having said this, it’s so hard to get the NHS to work in this way, isn’t it?
Please take advantage of the helplines offered by BCUK or Leukaemia Care. Also Leukaemia Care has a a counselling fund to help pay for some sessions as you’re clearly at a very low ebb and it might help you to talk about it and feel supported. Please be very careful about your paracetamol doses too as an overdose can cause liver damage.
I really felt for you when I read your post and of course as we usually find these things come to a head at weekends.
Very personally (I am not medically trained) I was also concerned about you not eating and taking paracetamol on an empty stomach. Also I need nourishment for my health, strength and mental well being.
Very personally I would keep warm, try and relax with a good box set, music, radio, book, whatever works for you.
If you really feel you cannot go on with your symptoms perhaps consider ringing your local medical services/ wards/111/999.
I am sure some of us will be about on the forum over the weekend. Sometimes I think not feeling alone helps.
Thinking of you loads, please do let us know how you are doing xx
A blood test for another reason showed I had v high monocytes. Further tests over a period of 9 months showed the same. I have no symptoms that I’m aware of. Recently they did a bone marrow biopsy expecting Chronic myelomonocytic leukaemia (CMML) I think. Anyway, instead they said a mixture of Myelodysplastic syndrome (MDS)/ Myeloproliferative neoplasms (MPN) which some internet sites say are forms of Chronic myelomonocytic leukaemia (CMML) anyway. So now it’s monitor with blood tests every 3 months and to just carry on as I am. I’m a recently active volunteer at my local church two to three mornings a week, I walk the dogs every day and even ran a half marathon in February. I travel a lot too which will now be potentially problematic re insurance. I don’t Intend to change much until and if I experience symptoms that impact day to day. I’m 70 with 6 children and 5 (soon to be 6) grandchildren. My 2 youngest daughters get married next year, one is in Mexico, so I look forward to those, keep going and give me negative moments to Jesus which was something my consultant commented would help me a lot.
In answer to your question I’d say nobody knows how it will develop or how quickly so best to try not to worry too much, get plenty of sleep, try to find a friend or relative who’s good at listening for anxious moments and try to enjoy everyday life and the wonderful world and nature around us.
Sorry it’s taken a while to reply. Sorry to hear of your diagnosis. Indeed Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) is the commonest type of Myelodysplastic syndrome (Myelodysplastic syndrome (MDS))/Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) overlap syndromes but there are other rarer types. Good to hear that you are fit, well and active and currently just being monitored.
I have had Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) for 17 years and thankfully not needed any treatment. Only my white cells and platelets are low but luckily haemoglobin is fine so not fatigued !
Please come back and post if you need any information or support.
so I was happy to help him. We’re a friendly bunch & it’s great that we’ve got the opportunity to share & help each other. It’s been a huge support for us.
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