Hi @Unclejack
So sorry to hear of your massive flare up. Sounds painful. But you seem to be able to get good care in your area sand you’re doing well to dodge colds etc.
@Sisi - the investigations continue for your husband but the main thing is that he is feeling ok in himself.
My pre-Christmas “surprise” gift was a urinary tract infection (which I’ve never experienced before:cry:) but not unexpected given my chronic IBS apparently! You can’t make this up! 
Managed to get a GP phone call quite promptly and he prescribed a targeted antibiotic. I held back for a day from taking it to see if the litres of cranberry juice and water I drank would do but the trick but symptoms worsened on Christmas Day so I started the 3 day course and it worked with no worsening if my IBS symptoms.
Managed to have an enjoyable Christmas with family and we are now relaxing doing a 1000 piece jigsaw and a very challenging New Year cryptic crossword!
Best wishes to all for 2026
Xx
Oh @ChrissyD oh. I know what it feels like for me when I get a UTI, it really drags me down in all senses of the word. I have also found that cranberry juice, cranberry tablets, sachets of something to neutralise my urine or gallons of water don’t do much for me either.
Glad that you managed to get a GP phone call promptly over the holiday period.
Oh, a jigsaw and crossword, however challenging they might be sound good to me. I am back at Pilates tomorrow.
Be ever so kind to yourselves all of you.
Hi @ChrissyD Oh poor you re your UTI! Horrible. Glad the antibiotics are working. And so pleased to hear you had an enjoyable Christmas 
I’ve had a fair few UTI’s myself. The worst being whilst at Glastonbury festival when I was in my 20´s & no proper toilets!!! 
Oh crikey.@Sisi Glasto and restricted access/queuing for below par dirty toilets sounds like your worst nightmare with a UTI.
A friend ( I think?!) asked me if I went bonkers with the UTI? No more than usual I guess (!) but I know that very elderly people can hallucinate so that’s another joy of old age to look forward to! 
x
@ChrissyD Yes! It WAS a nightmare!!! 
But luckily I lived to tell the tale 
And yes my Mum became very confused when she had a UTI a few years back. As you say, the joys of getting older!
@Sisi @Erica @Lyndam @ChrissyD
Hi all, just had a rude awakening about my chilbanes. Whilst perusing the Cleveland clinic website I discovered that chilbanes are a symptom of Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))) and other related blood cancer! I then contacted the help line at my clinic to discuss it. The advisor said I should have come to them earlier when the problem started. I replied that I had no idea or was given any info that chilbanes were a side effect of Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))). I pointed out that I tried unsuccessfully to get a G.P appointment I spent over 4 hours on the phone only to be told that all appointments were taken and to ring again at 8 o’clock the following morning which I did and received the same response. As I have said before I then obtained an appointment at the local emergency care centre. The clinician and a observer said probably chilbanes stay warm and if it doesn’t settle come back or see g.p.L.O.L. The advisor said the clinician should have referred me to the emergency help line. So tomorrow I will be contacting my clinic nurse to see what happens next. I got the impression that I was the author of my own misfortune. Considering how many attempts I made highlight this problem with the G.P. and my consultation at the urgent care centre I think that is unfair. It seems that ANY medical problem I have I should always refer to the clinic no matter how trivial. Unfortunately when I have tried to contact the clinic often they don’t answer the phone. Anyway tomorrow we try again hopefully something constructive happens. The emergency advisor has e.mailed the clinic so perhaps something positive will happen! Perhaps literature warning of what we should be concerned about with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) symptoms would be a good idea. After nearly four years of suffering Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) I didn’t know that chilbanes was a common symptom. Apparently high monocytes is the cause of this. I assumed wrongly that clinicians when dealing with cancer patients would automatically consult their computer to get important info about symptons people could suffer with these diseases. I really fear that this year will be very bad. I really believed that as a patient I expected to be informed of possible problems to look for as this disease progresses.
Anyway happy new year to all, uncle Jack.
P.S. I have my knees X.rayed Saturday, I dread to think what that may reveal!
Oh, @Unclejack @Sisi @Lyndam @ChrissyD and all
Very interesting and perhaps some of us with other blood cancers also have chilblains.
Oh, @Unclejack I really felt for you when you said ‘I really fear that this year will be very bad’ and ‘I dread to think what that may reveal!’ Please do let us know what the x ray reveals about your knees. Don’t forget we are always here for you to support you. I also think it is natural for us to be anxious, to a degree, about our medical unknowns.
Yes, a healthy, happy, peaceful 2026 to you all
@Unclejack I’ve not been aware that chilblains are a symptom of Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)). As dear @Erica says, I too really feel for you. Please do let us know how your X-rays go. I’ve always found with my husband that I’ve tried to focus on the facts & to try & not worry too much about things we can’t control. Although I completely appreciate sometimes it’s the unknown that we fear the most! I’ve been trying to not do too much ‘online research’ which I find tricky, as I naturally want to know everything there is about a condition so I / we can feel ‘prepared’. I think my husband finds this difficult sometimes, when I start sharing my ‘knowledge’ too much As Erica has said we are all here to help / support each other. Do keep us posted. Best wishes xxx
Hi @Unclejack @Sisi @Erica @Lyndam
@Unclejack I’m so sorry to hear you’re having the runaround with your clinical team and GP. It is certainly interesting that you’ve discovered a link between chilblains and Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)). I’m pretty sure that many of your haematology team will not be aware of this link either! If it’s any help or consolation my daughter (who has not got a blood cancer (!) suffers with chilblains every winter. Once it has been triggered by the first spell of cold damp weather, it tends to persist until the warmer weather comes . From her experience I’m not sure if there are many treatments available other than trying to keep your feet warm but maybe a pharmacist or podiatrist could be as helpful as a GP?
I also hope your knee X-rays don’t show up any problems. Though if you had any issues with your head and shoulders as well, you’d be able to sing Head, shoulders, knees and toes. None of our ailments are funny really but I Hope that gives you a wee giggle! 
Hi @Unclejack. This is very interesting the link with Chronic myelomonocytic leukaemia (CMML). I have had chilblains on 2 toes for the past few years, and just thought it was one of those things. Just make sure I try to keep my feet warm. Sorry you are having such a bad time again, maybe a little blip and you will have a better year. A happy new year to you and all blood cancer sufferers.
@Erica @Sisi @Lyndam @ChrissyD and all. Hi everyone happy new year and thanks for the support. Had blood test yesterday monocytes a little higher at 4.81 other levels steady. Platelets increased to 64 so pleased about that. Neutrophils excellent neutropenia now a distant memory (for now). The clinic nurse invited me in for a blood test and I explained what has been happening. She to was sceptical about chillblains connected to Chronic myelomonocytic leukaemia (CMML) but I explained I punched in Chronic myelomonocytic leukaemia (CMML) and Leukaemia on Google search and various clinics mentioned the link and mentioned the other similar blood cancers also had this symptom. Also I mentioned the great news about the AMMO trials as well they hadn’t seen anything about that. Anyway blood test results were reasonable so I’ve calmed down.
As I have said many times I search for Chronic myelomonocytic leukaemia (CMML) info all the time and sometimes it comes up trumps. Anyway 3.pm x-rays. Find out how the osteoarthritis is going on.stay well and best wishes to all Unclejack
Hi @Sisi @Unclejack @Lyndam @Erica
Hi Unclejack
Glad to hear your blood counts are pretty stable and especially that your neutrophils are good. Just what you need to keep you healthy with all these lurgies going around!!
Frankly, I’m not at all surprised that a nurse is not familiar with some fairly recent niche research about a rare leukaemia, nor about the chilblain link. Nor am I surprised when clinicians aren’t up to date either. I’m quite sure they don’t have the time or inclination to research rare connections whereas we, those affected, have a really strong interest in trying to make links between relatively rare conditions. As you say, often you will find nothing when you search but sometimes you strike gold as you have done here! So well done to you for being curious and sharing with us all.
Hope X-ray results come back soon 
Hi @Unclejack @Sisi @ChrissyD @Lyndam @Erica Happy New Year all! It’s all such a huge build up then it’s over in the blink of an eye! But good times had with family.
@ChrissyD my MIL had a UTI a few months ago and she’s been so affected mainly by awful anxiety and confusion since. They can be so nasty. We are hoping it gets out her system soon and back to relative normality. Were your antibiotics 3 days worth? She had to take more as the 3 doses didnt appear to do much. Hopefully you are on the mend now 
@Unclejack , interesting what you say about chilblains. My husband has them every winter in big toe. Never knew there was a connection.
@Sisi hope your husband gets all the results he needs for this new year and can move forward without any more diagnostic procedures. My husband continues to be well. We had another brilliant telephone consultation with Dr Dan Wiseman before Christmas and having the 3 monthly blood tests. How many times should a bone marrow biopsy take place? He’s only had the one about 18 months ago. Not that he wants it but just wonder if it should be annual?
All back to normal tomorrow with work, school and traffic! Joy!
Hi @Logsie @Sisi @lyndam @erica and all
@Logsie So glad to hear you’ve had some stable results for your husband and a helpful consultation with Dan Wiseman. Quite a few years ago there were some suggestions that bone marrow biopsies should be annually but that seems to have been dropped. In part this is possibly cost but more likely because, with the advent of Next Generation Sequencing, so much can now be discovered from a blood sample so this prevents an invasive and often painful procedure. All good news to me. I hate them!
On the UTI front, like your MIL I was started on a 3 day course of Nitrofurantoin which is specifically targeted to work in urinary tract only. It seemed to do the trick with the UTI symptoms except that 2 days after stopping I experienced massive amounts of blood in my wee - which was pretty scary. 
Not deemed urgent enough for a GP (!) so saw a physician associate who at least tested a sample and confirmed an infection still present and sent the sample off to the lab for more detailed analysis. Prescribed another 7 days of same antiobiotics. incidentally the sample sent off before Christmas came back confirming an EColi infection! For some mysterious reason, the antibiotics seem to have made an improvement in the chronic IBS symptoms that I’ve now had for 9 months, making me wonder if my original suspicion about the amoxicillin causing an overgrowth of bacteria could be correct!Seems too much of a coincidence? Anyway I still have an MRI scan and a Bile Acid Malabsorption test to complete before I can speak to anybody about it! 
@Unclejack You’ve now got me wondering if the red painful big toe I’ve had for a couple of months might be a chilblain! I was dreading that it might be gout! But now that @Logsie has said her husband has one on his big toe I’m thinking it might be!
This chat is a mine of information! 
Bests to all
Hi Chrissy x. rays completed, unfortunately results will take about 6 weeks. Never mind at least all being well if permission given by haematology perhaps I could get steroid injections by the spring here’s hoping. Do you know anything about steroid injections and Chronic myelomonocytic leukaemia (CMML)? Best wishes Unclejack.
@Sisi @Lyndam @Logsie Chrissie D
I to have developed a red big toe! Not sore but is certainly similar looking to chillblains. Clinician has also advised me to talk to GP about changing the beta blockers I take for blood pressure to another type as beta blockers do make your hands and feet cold, which is a cause of chillblains. Also if you have a gas condensing central heating boiler keep your eye on the condenser pipe that runs condense water out of the house to drain. If it freezes your boiler automatically shuts down. I have foam insulation around it and if temperatures are really low I put a old blanket over it. Checked it this morning and it’s frost free.
@Sisi @Lyndam @ChrissyD @Erica
Morning everyone. Just punched Chronic myelomonocytic leukaemia (CMML) latest research into Google search. The A.I. overview section was very interesting. DR.DANS breakthrough AMMO trials mentioned and a good few other developments mentioned. Seems perhaps we could be on the verge of other useful treatments. Here’s hoping.
Best wishes Unclejack.
Hi @Logsie Great to hear from you & glad all good. Yep, Christmas seems ages ago now! Hope it’s not too cold with you there. Freezing here in London 
Glad you had a good tel appt with Dan Wiseman. He’s a real tonic isn’t he. Feel very grateful that we’ve got his support. We’ve got another tel appt in early March with him. My husbands had 2 bone marrow biopsies, a year apart now. So not sure if they’ll plan to do them yearly?? Thanks for your best wishes. Take care of yourselves & keep in touch
@ChrissyD Oh gosh re you recent uti & Ecoli infection. Hope it’s getting easier now. And glad to hear you IBS symptoms have eased. That’s great news for you.
My husband also suffers from gout. Has done for a few years. It seems to flare up in his ankle a couple of times a year. Although seems to be more a family thing, as his sister & both nephews suffer from it. He’s trying to avoid being medicated for it & seems to be able to ice it & then dies down again. But you’re right, this chat is a mine of information isn’t it. Now thinking about chilblains! Take care & hope your keeping warm