Hi Jack, yes - I know Marmite!!! maybe from my time in England. That is great! You are doing everything possible that is good for your health and I am sure that it has a big impact on everything, also a slow progression. You are on a very good way! There are many things that are great for your immune system, so do whatever you can My dadās haematologist said the same, it is most important how you feel. And his platelets were only 7 at a certain point but he felt good and went for walks there were times when his blood tests were much better but he felt worse.
We apparently also share the same opinion about the platelet transfusion, keeping my fingers crossed for you that the tooth can be removed without!! I am confident you can.
Yes, with such a rare disease like Chronic myelomonocytic leukaemia (CMML) we need every information from every country we can get. If there is anything new I will always share with all of you!
Kind regards,
Silke
Dear Erika,
So nice of you to ask!! I really appreciate.
There are ups and downs ā¦ the summer was really good. Now it gets more ādark and difficultā again, as exactly one year ago I found out his diagnosis and in November they started Azacitidine treatment. Having lots of flashbacks and nightmares at the moment. But it is part of the process. Also the constant worries about my stepmum (she lived with my dad more than 30 years and is missing him a lot) and my grandma (his mum who is still alive but in bad condition) ā¦
Somehow it helps me to help others donāt know if that makes sense. But you are right, I also have to look after myself as I still need to heal and process everything that happened in such a short time.
Hope you are keeping well (have read some of your recent posts and it sounds like that :)) !!
You know that you also have to look after yourself
@Silke
Hi Silke how are you?
Wifeās chemo cream finally arrived and she has been using the preparation cream for one week and the lesion is looking better already. Starts using the actual chemo cream next Friday. As for my dental problem saw the hospital dentist and as soon has he receives my latest blood test results he will fast track the treatment.
So hopefully the broken tooth will be know more.
I have had my knuckles rapped for my recent comments on a subject of mutual interest so wonāt be commenting on this forum about my concerns again.
Hi @Unclejack I am glad that you have actually seen the hospital dentist and lets hope you do get your treatment very fast tracked and you can show off those pearly whites again.
Please do keep us posted and look after yourself
@Erica
Hi Erica
My pearly whites I am afraid are no longer that colour. I am afraid Rose hip syrup when I was very young started the rot.! In my case chocolate carried out the final destruction. I still scoff dark chocolate a couple of squares a day for health reasons!
Best wishes unclejack.
@Erica
Hi Erica just a update on my tooth extraction.
Dentist has said my platelets at 58 should be okay for the extraction so thatās okay.Stil havenāt got a appointment for the extraction. The dentist said he would fast track the procedure once he speaks to haematology. That was over two weeks ago. Just hope platelets donāt fall in the meantime. Hoping you are ok.
Best wishes unclejack.
@Erica @ Silke
Hi folks hope you are both Okay. Finally got my tooth extraction date 2/12. Saw the letter between haematology and maxi facial department. They are going to prescribe a mouthwash and the same medication in tablet form to stem any excess bleeding. I donāt mind the mouthwash but not taking any pills unless absolutely necessary. My last blood test was very stable platelets 58. I expected a test before extraction as it is mid October since the last one but apparently not. Read up on these pills and not happy about the side effects listed. Plus as my blood tests have been very stable I donāt want to cause any negative effects. My wife finished the efudix treatment last Saturday and the area treated although still very red is beginning to slightly calm down. Still searching for a miracle cure. Read a very interesting article from Stanford university in America dating back to 2021. A trial using a anti-parasitic medicine had a dramatic effect on colorectal cancer and at the time confidence that this could treat many other cancers including blood cancers, seems many repurposed medicines are useful.
Unfortunately because there is little profit in them for big pharma they disappear without trace. In the UK the press is always telling us about a miracle cancer cure that usually disappears without trace. Anyway really worried about the coming extraction, I have my routine blood test only a week later and hoping that any bleeding has subsided and not affecting my blood levels.
Best wishes unclejack.
Thanks for the update @Unclejack firstly I hope your wifeās Efudix treatment is successful, I have a mark that means the pre cancer cells are back above my lip.
I am not surprised that you are anxious about your tooth extraction on 2/12. At least you have a plan, but it is the unknown aspect that always makes me anxious.
Look after yourself and please do let us know how you both get on, sending you both love. xx
Hello. I was diagnosed with Chronic myelomonocytic leukaemia (CMML) in November 2022 and was a really fit runner/cyclist and swimmer in 2020-2021. I have similar suspicions regarding the Covid injections as I was fit as a fiddle before.
I have been coping well but finding work increasingly difficult due to bad bouts of fatigue.
@Multivanman a great big welcome to our forum and it sounds that your fatigue is getting worse.
It might help to keep a fatigue dated diary with events and then how your fatigue has been for your next appointment.
Since my diagnosis I do not deal with what personally stresses me well and also my fatigue can be brought on by emotional issues, psychological issues, medical issues, physical issues or practical issues, sometimes the fatigue can come on immediately or up to 48 hrs later.
I sometimes find that some fresh air and appropriate exercise helps me
I will copy the Blood Cancer UK details on fatigue Fatigue | Blood Cancer UK
The Blood Cancer UK support line is also there for you on 0808 2080 888
Be kind to yourself and please do keep posting how you are
Hi Erica
I definitely find that stress and low mood contribute to my fatigue, I had a review with my Hematologist this morning and my bloods have remained steady since October but currently I feel completely drained. I changed jobs in March this year but now find myself driving about 20,000 miles a year and my boss has refused to give me any flexibility in my hours which I had hoped might make life easier.
All going well the nights will get lighter in January and I will be able to get out on my electric bike which always helps.
Its good to be able to talk to others with the same condition and yesterday I watched the presentation by Daniel Wiseman which was really interesting.
Have a great Christmas everyone.
Hi @Multivanman I will copy you some information on your rights at work and financial benefits that can be applied for Blood cancer: money and work | Blood Cancer UK
Yes I have found getting to know myself and how I react to what personally stresses me really helps.
Please do keep posting and have a healthy, peaceful break.
So sorry to hear of your Chronic myelomonocytic leukaemia (CMML) diagnosis. To be honest, Iād be a bit concerned about your fatigue and still driving 20000 miles a year. From both the point of view of your own safety and that of others. Fatigue and long distance driving are not a good mix. Surely there are Health and Safety issues here -whatever your manager might say he has a duty of care to you, given your health situation. Do you have a union rep or HR person you could talk to? I think @Erica has already given you some links about employment rights? And BCUK has a support line.
I hope you can find some solution to your situation.
Best wishes
Chrissy
hello, I just saw your post and it reminds me of my dad. He was also a runner, mountainclimber and professional soccer player in his youth. Always fit and healthy. May I ask you for your age?
As you mention that you are still working I assume also quite young for this diagnosis. How are you coping with your fatigue right now? Are you currently on wacht & wait?
All the best
How are you doing? Hope you and your wife had a great start into the new year and you are still stable. Could your tooth problem be solved?
Best wishes
@Silke
Hi, Chronic myelomonocytic leukaemia (CMML) is still stable, eventually had tooth extracted after 5 blood tests to check platelet level. They had fallen to 41 and then recovered to 50 at which time after a meeting with my haematologist they decided it would be ok to do it. They gave me medication to stop heavy bleeding. Tablets and a mouthwash and bleeding was minimal. I was concerned about any medication that effects my blood levels but no alternative other than a platelet transfusion which I am extremely wary of. Anyway 6 days later I had a T.I.A. (minor stroke). In hospital 4 days. CT scan and MRI scan revealed no damage. Consultant said they were pretty sure it was a TIA but some of my symptoms were not related to a normal TIA. Stroke unit wanted to prescribe a small aspirin but haematology said it would be dangerous so that was vetoed. Consultant said a hemiplegic migraine mimic strokes and that was unlikely but possible. I have suffered migraine with aura since I was in my teens but this was different from my usual problem. I wonder if it was anything to do with the medication I was prescribed to stop bleeding when they pulled the tooth? Anyway got home before Christmas and my 74 th birthday. And my latest haematology blood test says Chronic myelomonocytic leukaemia (CMML) is stable. How are you? Strangely everyone around me is suffering with flu etc yet I continue to have absolutely no infections. I think my high Vit D levels are doing a great job for my immune system. I make sure my diet includes anything that supports the immune system. Professor Dalglish swears by blood vit D levels.
So I follow his advice closely. GP carried out vit D test and recommended supplements. Strangely one of our medical authorities has told our GPs not to carry out vit D tests. This in a country that lacks sunshine. And vit D (actually a hormone) is essential for the immune system.
Perhaps outside forces controlling the narrative
But my GP and haematologist always willing to ask for Vit D test so hopefully that carries on. On another subject my cholesterol level has now fell to 1.8? My GP says she has never seen figures that low. But haematology are still recommending 40 mg ATORVASTATIN.
Anyway hope you had a good Christmas and have a happy new year
Best wishes unclejack.
Dear Jack. Oh wow - you have gone through a lot recentlyā¦ Very happy to hear, that the tooth had been extracted finally! Sorry to read about the TIA. Hard to say what caused it, but I also found the other thread now where you exchanged the whole story about the dentist appointment etc and for sure this was LOTS of stress for you (not knowing if treatment can be done or not ā¦). I am sure at a certain stress level our body canāt cope anymore and reacts in one way or the other.
High Vitamin D level is great and sooo important same with me. Trying to keep it high, eat healthy, sleep enough, exercise well (even if it is freezing cold outside) to support my immune system (everyone here is sick since two weeksā¦ I feel like a personal nurse already ). Hope to stay healthy and same wishes for you!! Always a pleasure hearing from you.
Best wishes and enjoy your weekend, Silke
@Silke
Hi silke
Thanks for your support. My wife has had a dreadful cold for well over a week thankfully itās a lot better today. Strangely I havenāt caught it . I am not complaining, but considering leukemia is a massive threat if you catch anything I wish somebody cleverer than me could explain why I havenāt had a cold or infections for nearly three years. Next month is the third anniversary of my first symptoms although diagnosis via a bone marrow biopsy didnāt occur until April 2023. Still on watch and wait havenāt had a face to face with haematology for eighteen months. I have now added mushrooms to my diet (organic) and
Probiotic drink. Have read the microbiome is very important for the immune system. I still follow Professor Angus Dalglish closely and Professor Robert Clancy and Dr. David Grimes.
I am hoping that now Bobby Kennedy JR is in charge of health in the USA perhaps a light will be shone on big pharma and their behaviour.
As an aside seems the UK is sinking into a swamp of dreadful behaviour and corruption.
I really hope I carry on long enough to see the bad guys receive punishment. Anyway all the very best to you. I will keep in touch.
Best wishes unclejack.
maybe from my time in England. That is great! You are doing everything possible that is good for your health and I am sure that it has a big impact on everything, also a slow progression. You are on a very good way! There are many things that are great for your immune system, so do whatever you can 
My dadās haematologist said the same, it is most important how you feel. And his platelets were only 7 at a certain point but he felt good and went for walks 
there were times when his blood tests were much better but he felt worse.