Hi @Lyndam
Sorry you cannot make the meeting and that Zoom is a challenge for you! We’ve all been there but once you’ve dine a couple , it becomes quite straightforward. Here is a link to some resources on the Myelodysplastic syndrome (MDS) UK website, including links to an organisation that helps people with IT issues.
Hope this helps and look forward to seeing you at any future Chronic myelomonocytic leukaemia (CMML) meetings.
Take care
ChrissyD
Hi @ChrissyD
Many thanks for the link I will give it a try, and hope to join you at a future meeting. Lynda
Hi @Unclejack
Yes I am still well most of the time. Bloods are still holding around the same levels. Hope everything is okay with you. Lyndam
@Lyndam
Hi Lyndam. Absolutely great to hear you are ok.
Yes I am okay still on watch and wait. One year since my bone marrow test revealed my diagnosis. At diagnosis I had 10 abnormal levels in my blood I now have 5. I totally changed my diet last year. Blueberries, bananas, yoghurt, eggs MANY eggs, gallons of green tea, chamomile tea, mackerel, dark choc 85 percent cocoa two squares per day melted into two cups, pumpkin seeds about 1oz per day or slightly less, raisins, mango, large doses of Vit D,
2 helpings of porridge morning and night. Figs, apricots, walnuts, Brazil nuts, extra virgin olive oil 1 tablespoon at breakfast and one tablespoon late at night, small portion of Edam cheese. Persuaded my haematologist to test my Vit D levels. They are now excellent and so important. Strangely my cholesterol is down to 2 and I still have to take statins! GP says she’s never seen levels that low! Haematologist still recommends statins though. I bet you think I must weigh 30 stone. I have increased my weight to 11 stone 7! Long walks and every day on the exercise bike keep things in check. As I take no medication I thought let’s try a new diet.
I don’t think my diet would fit into slimmers world! Perhaps blood cancer UK could monitor how my condition reacts to this bombardment of antioxidants and anti inflammatory foods.
I forgot to mention the orange juice morning and night plus slow release vit c. I still break into a sweat before every blood test and my tests still fluctuate but the trend is stable and better than they have been since the dreaded diagnosis occurred. Incidentally my diet is spread over a week with certain parts daily. Although my blood levels are not normal by any means I feel fine.
Don’t laugh to much at my diet!
Very best wishes stay well
Unclejack.
Hi @Unclejack
Good to hear you are okay. As for diet I decided long ago I was going to eat a little of whatever I wanted when I wanted, so not sure how much diet plays in this disease. I am only 10 & a half stone and don’t seem to put any weight on. It is coming up 3 years this August since my diagnosis and I decided long ago not to worry but to get on with life. Hope you continue to be okay. Lynda
Malcolm1 yes I have it. 2 years now
Hi @Malcolm1 welcome to our forum and as you have shown you are never alone on our forum.
I hope that you can also relate to posts no matter what the diagnosis is.
I really look forward to hearing more about you, so please do keep posting.
Look after yourself
@Malcolm1
Hi Malcolm I to was officially diagnosed Chronic myelomonocytic leukaemia (CMML) a year ago. My symptoms started at the end of 2021. Initially small specks of blood on the lower legs. Initially I was sent to dermatology who diagnosed skin cancer and offered a chemotherapy cream. I had my doubts so asked and received a biopsy. This revealed it was blood leaking from capillaries and not skin cancer. Then followed more blood tests. Then in October 22 after being told my latest test was completely normal I received a message from my GP who said it was completely ABNORMAL and urgent referral to haematology was arranged. The mystery continued until May 23 when a bone marrow test revealed the diagnosis. After the shock I rolled my sleeves up and researched the diagnosis and found out the rarity of Chronic myelomonocytic leukaemia (CMML), 3 in 1 million of the UK population were diagnosed with it. That figure has been updated to about 11 in a million in recent months. I am on watch and wait still and my blood count at the moment is stable and better than it has been for well over a year. Thrombocytopenia has always been my main symptom. Platelets always between 50 and 80.
Neutrophils fluctuate slightly between normal and neutropenia levels. At diagnosis I had 10 abnormal levels now I have five abnormal levels.
Basically have your symptoms been stable? I apologise for asking these questions but information is hard to come by. I am 73 years of age so no chance of a stem cell transplant. To be honest up to this point if it wasn’t for abnormal blood tests I wouldn’t have a clue I was ill. Like most of us on the forum I sweat when blood test time comes about!
There is one lady on the forum who as had Chronic myelomonocytic leukaemia (CMML) for many years and is a goldmine of information and experience which has certainly improved my morale.
Very best wishes to you,
Unclejack.
Thank you for your reply, I am eighty one.years old, had two new knees and two new hips in last three years.unfortunately inbetween all that - I fell of patio chasing my dog and broke my leg! This was when they found the blood cancer,I am ok just have a talk with my doctor every three months after blood test. Have a game of golf every week,and a couple of beers. Haha - nice to hear from you.
@Malcolm1
Morning Malcolm. Just read your reply. Wow you have had a tough time. At least your Chronic myelomonocytic leukaemia (CMML) is stable! I see the consultant every 2 to 3 months usually a telephone appointment. I managed to download the NHS app and can now monitor my blood test results via the GP test results record. It is a excellent bit of technology.You can arrange a chat with GP order prescriptions it’s very useful. Anyway stay well. All the very best wishes to you.
Unclejack.
Hi
I have just been diagnosed with Chronic myelomonocytic leukaemia (CMML)-1 (Age 71yrs)
It only came about because I volunteered for university research, Anomalies were found …and here I am!
Apparently it is “watch and wait” and the haematologist suggested that it may be 10 yrs before “it turns to something nasty”.
But I seem tired so quickly.
Anyone else get this ??
Thanks for reading x
@Justme13
Hi, yes I was diagnosed with Chronic myelomonocytic leukaemia (CMML) in May 2023 after roughly 2 years of symptoms. My first symptom was Thrombocytopenia (low platelets)
My blood tests were a rollercoaster but the trend was abnormal. I was told the KNOWN causes were benzine and radiation (even radiotherapy treatment for other cancers could trigger it). When I started this thread I read data that suggested the incidence was 3 in 1 million. Apparently the recently revised data is 11 in 1 million. Eventually I ended up in Haematology and was told initially it was NOT leukemia. A bone marrow biopsy revealed the truth. Initially my symptoms were diagnosed as skin cancer.
I asked for a biopsy and this revealed the tiny red specks on my lower legs were actually blood from leaking capillaries. Which is a symptom of low platelets. Anyway like yourself am on watch and wait. I still feel very well and if it wasn’t for those abnormal blood tests wouldn’t have a clue I was ill. Unfortunately at time of diagnosis I was left in no doubt that the prognosis was not good. Only a stem cell transplant could cure it and at 72 was to old. I AM NOT A MEDIC AND HAVE NO MEDICAL QUALIFICATIONS. But I am obsessed with finding out everything I can about this disease especially it’s possible causes and future treatments. Seems there is confusion about this problem. I was diagnosed as Chronic myelomonocytic leukaemia (CMML) 1, then Chronic myelomonocytic leukaemia (CMML), then probably Chronic myelomonocytic leukaemia (CMML) which raised the question is it Chronic myelomonocytic leukaemia (CMML) or not. I totally changed my diet and my blood levels have improved, of course this could just be a total coincidence. I am 74 this year
Strangely I am never ill up to now. In fact my neighbours who are not suffering from blood cancer are ill all the time.
I very often do shopping for them as they suffer their latest COVID attack! So basically so far so good. I think I am very lucky compared to many.
I don’t ask to many questions of my consultant because there is little to be done and I am scared of the possible answers. I have blood tests every 2 to 3 months, I check regularly my spleen and liver for any swelling and check for swollen lymph nodes. The mystery to me and I say this seriously and am probably speaking to soon I never get colds anymore, cold sores etc.
I had a dental check up last week, I did have a tiny gum boil after he got rid of some tartar. Believe it or not it lasted for 4 hours and disappeared. So there you go. I just stick to my new diet religiously and hope for the best. I never smoked and do have a couple of drinks a week total alcohol units about 5/6 units.
Welcome to the forum full of good people and good advice I find it invaluable. Erica in particular is brilliant, and should be awarded a gong for all the help she offers.
All the very best to you and keep posting
Best wishes unclejack.
Hi @Justme13 welcome to our forum.
I am on watch and wait (or active monitoring) and I have been for the last 20 yrs and long may it last.
I am 74 yrs old and yes, a common side affect is tiredness or fatigue, but I personally think I am a very complex being so working out what my fatigue is attributed to is very difficult is it my Chronic lymphocytic leukaemia (CLL), my leaking heart valve, my lung damage or my senior years etc??
I will copy some information from the Blood Cancer UK website for you.
Blood cancer and fatigue | Blood Cancer UK
Active monitoring (watch and wait) | Blood Cancer UK
Personally I am a Pilates girl and I believe in appropriate exercise, fresh air, and walking for me.
Get to know yourself, perhaps keep a diary, and work out when you get tired, for me it is what personally stresses me and overdoing it emotionally, medically, physically, psychologically and practically.
Please do keep posting as I look forward to hearing more about you and look after yourself
@TanyaBloodCancerUK
Hi Tanya, I have been referred to hospital for a tooth extraction due to low platelets. My dentist who referred me still charged me 73 pounds (NHS dentist) for the extraction to be carried out. Does anyone know if this is the standard procedure. just seems odd that the dentist gets paid for hospital extractions.
Hi @Unclejack
Hope you are doing okay, I would maybe check this with your dentist. This could be due to the referral itself to the hospital but according to this Macmillan web link you should only be paying for hospital dental appointments if you needed dentures or bridges, otherwise treatment in an NHS dental hospital should be free Health costs | Macmillan Cancer Support NHS have a page about who is entitled to free treatment here Who is entitled to free NHS dental treatment in England? - NHS (www.nhs.uk) and this says the same. It seems as though you have been charged Band 2 How much will I pay for NHS dental treatment? - NHS (www.nhs.uk) for your dental treatment which I would imagine you would only pay for, if the tooth extraction was not at a hospital dentist, so unless this is a referral fee, I would perhaps double check this? As I think you would only usually pay for NHS treatments at dental practices, rather than at dental hospitals. Hope this helps!
-Emma
@Emma_BloodCancerUK
Hi Emma thanks ever so much for your advice. The links you provided were very helpful. It clearly states that dental work carried out by NHS hospital dental department is normally only chargeable if bridges or dentures are involved.
Actually I was last referred by my dentist to hospital in 2006 for a minor gum repair by the same dentist incurring no charge. Admittedly that’s a long time ago and probably the system may have changed. Anyway the practice manager is going to contact me tomorrow (Wednesday) to explain things. Obviously I expected to be charged the routine check up fee
but not for treatment at the NHS hospital. My haematologist advised it must be carried out in hospital because of low platelets and risk of bleeding. I am wary of not upsetting my dentist has I have been a patient for many years and he has always been very helpful. I thought it was probably a genuine mistake but I think I am just going to accept that a refund is unlikely. I paid up front and should have asked the question at the time. But if you are entitled to free treatment it is hard to swallow having to pay. I wonder if this is a common practice and perhaps the forum may have others experiencing a similar situation. A great pity we with leukemia and low platelets aren’t looked after by the hospital dental department in the first place but I expect they are completely overwhelmed especially with the dental crisis and having to cope with the recent massive increase in patients.
Thanks so much for your help
Best wishes unclejack.
I needed to have a tooth extracted a couple of years ago and because of my Polycythaemia Vera my dentist referred me to the dental hospital for the treatment. There was no charge from the dentist.
@Jonpd
Thanks for your reply. I’ll see what the practice manager says tomorrow. I won’t jump the gun but I am beginning to think there is something dishonest about this
Best wishes unclejack.
My OH needs a tooth extracted but his platelets haven’t gone above 20 in 6 months and average 9 to 13, haematology at our hospital have said they will give him a pool of platelets on the day of surgery but this will only bring him up to an absolute maximum of 33.
I’ve been reading on the internet and it seems that the minimum should be 50 I don’t think that our dentist should even consider doing an extraction “in the chair” because he won’t clot after. dentist has gone on holiday right now so it’s off the agenda right now.
But how do we get this done in hospital? The hospital has already shown no interest in referring him to their maxilofacial department and would be willing for the dentist to do the extraction but I think this is too risky.
@Hellodolly
Wow my platelets are mostly above 50 but my consultant is adamant that hospital extraction is necessary! I hate the idea of any transfusions unless absolutely necessary. Hope your hubby gets this sorted
Best wishes unclejack.