Hi @Hellodolly My son, who hasn’t got blood cancer, was referred to the hospital dentistry department by his dentist for a complex extraction if that helps.
How were you diagnosed?
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Hi @Nana welcome to our forum and having read your question I wonder if you have a blood cancer diagnosis.
If not, it is probably an anxious time of waiting and not knowing.
I look forward to hearing more about you.
Look after yourself
Nana. Why are you asking.
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Howdy Uncle Jack
I too have the Chronic myelomonocytic leukaemia (CMML) diagnosed April 2022. Wouldn’t know I have it, other than low platelet count and enlarged spleen. It would not have been spotted apart from regular visits to the CT scanner whilst undergoing treatment for bladder cancer when they noticed the spleen growing.
I am a 68 year old male from Chester and on W&W. Bloods have been fairly stable but just recently my platelet count dropped to 39 and this is a real problem as I am due to undergo surgery for a new hip and it won’t be possible unless my platelets are minimum 50.
From what I have seen and read, it’s a very unpredictable disease which seems to affect people differently.
Have you seen the YouTube clip from Dan Wiseman ? He explains it very well. I am very fortunate to have him looking after me. He seems to be the most clued up guy in the UK.
Good luck with your journey.
Best regards
Pete
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@Peteed00
Hi Pete.
I started my symptoms in late 2021/Early 2022.
First tiny specks of blood on lower legs. I saw the nurse practitioner couldn’t see a GP. SHE thought it was a skin complaint and referred me to dermatologist. She took a look said it was skin cancer!! And chemotherapy cream would clear it up! I immediately asked for a biopsy which took place a couple of weeks later. This revealed it was tiny capillaries leaking blood.I found out later a classic low platelets sign. There was no follow up. I had my routine blood test a few months later and my GP immediately referred me urgently to haematology. On attending haematology I asked if this was leukemia. Consultant said no. In the meantime I found out that thrombocytopenia was a possible side effect of a medication I had taken three times in 2021. One of the practice GPs said this was possible as a few cases had been reported.
Anyway after 4 months of blood tests a bone marrow biopsy was taken which confirmed Chronic myelomonocytic leukaemia (CMML). The day the news was broken to me I was speechless as I felt so well, and I still do.
My clinic is overwhelmed and the staff do their best in difficult circumstances. I haven’t seen my consultant for a year and have a blood test every 3 months followed by a telephone call from consultant. After the dreadful shock I quickly found blood cancer UK. They and the forum have been invaluable especially Erica and ChrissieD. Both these ladies have survived many years with blood cancer and Christie D has Chronic myelomonocytic leukaemia (CMML). She informed me about Dr. Wiseman at the Christy and his u.tube lectures about Chronic myelomonocytic leukaemia (CMML)
Going back to low platelets I need a tooth extraction but my consultant insists it takes place at the hospital because of low platelets. My level is between 50 and 80. I am waiting 6 weeks and heard nothing yet. Again they are overwhelmed. I really fear having a transfusion until it’s unavoidable. I am to old at 73 for a Stem cell transplant so just hope things stay stable. My full blood count is stable and that improved after I changed my diet. Anyway nice to talk to you and stay well. Good to hear you have Doctor Dan on board.
Very best wishes unclejack.
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Thanks for getting back to me Jack, we are both about the same distance into this thing, when I was diagnosed, my haematologist admitted that it’s so rare and he doesn’t know much about it, that’s why he referred me to Dr Dan. If I was you, I would ask for a referral to him.
Have they had you in the CT scanner to see how your spleen is doing ? Have they told you what your gene mutations are ?
What percentage of Monosytes / blast cells ?
My platelets have been in the 50’s throughout the last 2.5 years. I am booked I. For a hip replacement in November and the surgeon has said he is happy to do the OP as long as the platelets are above 50. Unfortunately, my last blood work indicated that they have now dropped to 39 which is a real bummer.
Good luck with getting the dental issue resolved
Best regards
Pete
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@Peteed00
Hi Pete
As concerns cell mutations I have seen a letter from my consultant to the GP. it states probably
Chronic myelomonocytic leukaemia (CMML) 1 at high risk of mutations on careful watch and wait. Unfortunately they made amess up with my bone marrow biopsy, they didn’t take enough material out! Haematology Doc organised another bone marrow test but this was overruled by consultant. The haematology doctor was spitting feathers about this. I don’t ask to many questions as basically I am scared of the answers! One thing I am curious about is the reference of PROBABLY Chronic myelomonocytic leukaemia (CMML)1! To me that indicates they are not sure. I have researched as much as I can about it and found out it was 3 in 1 million cases in the UK annually I believe that has been updated to 11 in 1 million . I also read information that radiation therapy for other cancers could cause it, as well as benzine exposure. I downloaded the NHS app to record my blood test results etc. Found the app very useful. At the time of diagnosis I had 10 abnormal levels in my blood. That has reduced to about 6. My monocytes are 129 down from 190. Consultant seems pleased with the stability and improved blood count. On day of diagnosis the doctor left me in little doubt that this would be terminal eventually in a less than 5 mins conversation. Then I was given a cancer UK brochure to read and that was it. As I say not had a face to face with consultant for a year. Had a terrible bleed in my mouth just over a year ago. A blood blister formed the size of a ping pong ball nearly choked and couldn’t get a ambulance. Fortunately a very decent taxi driver got me to A and E covered in blood very quickly.
What a dreadful state our country is in and obviously getting worse. It’s no wonder we have the worst cancer survival in Europe. It’s no wonder the rich use private health care. I am lucky to have a excellent GP who goes out of her way to help me. No stem cell transplant,to old.
They told me only palliative care when necessary. I have studied every food on the planet looking for anti inflammatory and antioxidant rich foods and I really do believe it helped to stabilise my abnormal blood levels. One thing I cannot understand is why my cholesterol level is now below two and yet they insist I take a statin every day. My haematologist says the Chronic myelomonocytic leukaemia (CMML) causes this. Find this difficult to believe but what do I know!
Very best wishes Jack.
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@Erica
Hi Erica It never rains but it pours. My wife about 14 years ago splashed a oven cleaner on her face whilst at work. It left a small pink blemish hardly noticeable. About a month ago it started to weep and looked angry. She was referred to dermatology. Was told it was a pre cancerous condition. She was prescribed two creams.
Unfortunately the one called efudix is nowhere to be found global shortage they say. Tried all local pharmacies and the same story non available. Apparently it’s been on the market for some time with no availability problems.I myself had some sun damage earlier this year when it was available. I only used a tiny amount which worked quickly. Trouble is it says on the packet don’t use if it’s been opened for 90 days so that’s stopped that idea. Waiting for medication with a pre cancerous condition is not ideal! The pharmacy hasn’t any idea when it will become available.
It’s on prescription only so can’t get It OTC.
I did receive a hospital dental appointment for the middle of October. They are going to X ray it then liaise with haematology on how remove it.
All depends on platelet situation.
Hope you are well.
Best wishes unclejack.
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Hi @Unclejack Yes, I have had Efudix a couple of times.
I have always got the prescription made up in the hospital pharmacy, as opposed to my local pharmacy. It is just a thought
I am glad that you have got your hospital dental appointment and that they are going to liaise with haematology so you will be in safe hands.
That was my experience anyway and by the way my son is still waiting for his hospital dental appointment.
Please do let us know how you both get on and look after yourselves.
@Erica
Evening Erica, yes the prescription is with the hospital pharmacy. We tried the local pharmacies has a last resort without success.
So it seems we have no idea when the medication will arrive. Anyway I hope you are well
Very best wishes unclejack.
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Dear Jack,
So sorry to read about your wife. And also what you have/had to go through with the dental problems. I haven’t been here for a while, but now the time of the year starts when I realized my dad’s diagnosis last year, somehow I still cannot understand everything that happened.
I am happy to read that many of you are still on the watch & wait and platelets stable.
Wishing everyone all the best, take good care of yourself (as you do - I am impressed about your diet, this can make such a big difference!) Silke
Dear Pete,
May I ask you if your hip replacement is really necessary? Are you in lots of pain?
My dad had the same problem (Chronic myelomonocytic leukaemia (CMML) and then hip surgery last August). The doctors always told him, he should NOT do the hip surgery. But he insisted. That’s why I am wondering if this ever was an issue with you? Or you just got the appointment for the surgery?
All the best and kind regards,
Silke
Hello @Unclejack, please don’t keep sharing anti-COVID-19 vaccine pseudoscience on the forum from the likes of an Australian MP who “refused to be vaccinated against COVID-19 [and] has used parliament to promote a drug not approved for treating the virus”, that drug being the horse dewormer ivermectin: Liberal MP Russell Broadbent promotes personal use of a drug banned for COVID-19 treatment - ABC News
Doctors such as Dalgleish, who you’ve shared on the forum before, spread dis- and misinformation about COVID-19 vaccines and have also been shown to have ulterior motives and a vested interest in promoting medicine for COVID-19 that he invested in: The Brexit Conspiracy Files: Top Science Journal Faced Secret Attacks – Byline Times
Spreading inaccurate and misleading opinions by misinformed people like the ones above, no matter how prestigious you think they are, can risk the health of vulnerable people here on the forum like yourself and everyone else.
At this time of year when blood cancer survivors in active treatment like myself are safely getting annual COVID-19 vaccinations, your posts might influence others to avoid these clinically proven, life-saving vaccines. Unless you are also a doctor specialising in COVID-19, perhaps leave the advice to experts.
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Hi @Duncan and @Unclejack I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
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Hello Silkie
Apart from having the Chronic myelomonocytic leukaemia (CMML) I also have severe osteoarthritis, been experiencing pain in my right hip, knee and ankle for over a year.
Hoping a replacement hip will fix the problem. However, at the moment, my platelets at 39 are too low for any major surgery
How is your dad now ? Is he pleased with his new hip
Regards
Pete
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Hi Jack, nice to hear from you, too!
No progression since 30 months is amazing!! You are doing so much (diet etc) - it can certainly improve your health and stabilize certain body functions. I also met other people in German-speaking forum they have not had any progression for many years. I understand it is still difficult, but Chronic myelomonocytic leukaemia (CMML) is a rather complicated and unpredictable disease. Maybe it will never progress 
that’s what I hope for you!
About the rest, there is a lot going on (also in Germany). That is all I can say so far 
All the best and warm regards,
Silke
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Hi Pete,
Ok I understand. I just checked and you wrote you are on W&W, still your platelets are so low. Very interesting for me, my dad never had problems with the platelets only after the treatment had started. But he also had an additional disease affecting the red blood cells which made everything very difficult and impossible to handle after a while.
His hip surgery went very well and he was happy afterwards as he did not have any pain anymore then
But his other diseases were out of control shortly afterwards and he did not survive.
Wishing you all the best, fingers crossed for the platelets to stabilize!!!
Silke
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Hi @Silke How are you doing since the loss of your dad?
You are doing so well supporting others.
Look after yourself as well as you look after others.