Hi @Unclejack no, I can understand your feelings and that is a lot of bereavements to deal with.
I have a family history on my mothers side of females dying instantly in their mid sixties of cerebral haemorrhages, but my only sister and I are both in our 70’s.
We have also outlived our father who died in his early 70’s of lung cancer, although he was a pipe smoker.
Best wishes to you too
@Erica @ChrissyD @Heidi_BloodCancerUK
Can anyone tell me if they have had a platelet transfusion and their experience of any side effects? I may need 1 unit to extract a tooth
Best wishes unclejack.
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No idea @Unclejack, perhaps your specialist nurse, if you have one, might be of help.
I hope others might be of more help to you.
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Hi @Unclejack. No personal experience but from listening to people who have had this treatment, like almost every other treatment, the answer is probably “it varies”! Individuals respond differently -even from one transfusion to another. There’s nothing you could do in advance to alter how you might respond so I guess you’re just going to have to go with the flow, so to speak! I’m still hoping your platelets have gone up a wee bit so it might not even be an issue? 
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@Erica @ChrissyD
Hi all.
Unfortunately the state of our NHS put me in a position of making a decision I may regret. I had to get this tooth sorted. I would have waited until the pain was intolerable if I could have before going for it. But considering it has taken over 4 months to get where I am, that would have been dreadful. I was lucky the pain was manageable. The fact I needed a blood test before treatment was the fly in the ointment. I would have gladly paid for my treatment but tieng blood tests in with the extraction was difficult. Although my platelets have fallen at least my neutrophils are well into the normal zone and I no longer have neutropenia. My other levels are stable. Strangely although my platelets have always been low, I have no symptoms of thrombocytopenia. No strange bruising or bleeding gums etc. I did have penechet at time of diagnosis and I had a few blood blister issues in my mouth caused by my habit of eating food like there’s no tomorrow.
I have said many times if it wasn’t for abnormal blood tests I wouldn’t have a clue. Monocytes are 158 and have been for quite a while.
Anyway thanks very much for the support.
Hopefully no problems tomorrow
Best wishes unclejack.
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Fingers and toes crossed for you @Unclejack
Be kind and look after yourself
@Erica @ChrissyD .
Hi Erica and Chrissy
Was at hospital from 9 to 4 yesterday. Blood test at 9am. Platelets as Chrissy suggested had recovered to 48. Haematology had a meeting with dentist and they decided to remove tooth without platelet transfusion ( phew) . Procedure at 2. PM. Tooth removed, no pain, and little bleeding! Given transemic acid, pills and mouthwash. Wound was plugged and stitched.
Woke this morning with a little blood in mouth but fine. Slight bleeding ceased after breakfast.
A little sore but nothing a couple of paracetamol can’t handle. To be honest far less bleeding than my last extraction a few years back. Now I return on Thursday for a blood test,(4th in ten days) Initially they wanted to see what the effect the platelet transfusion had on my levels but that no longer necessary or possible. So just a normal test for my consultant. Seems a strange time, but every time I expect the worst things go well. I have said before I don’t seem to catch anything, (my wife is full of cold) and I have spent hours in the hospital this last 10 days and not up to now caught anything. The cherry on the cake having a tooth extracted with only 48 platelets and tiny amounts of blood. Perhaps I am just lucky or the Lord wouldn’t appreciate my continual ranting about everything just yet. Anyway thanks for putting up with me and the great support.
Best wishes unclejack.
P.S Anyone waiting for dental surgery if my experience is anything to go by don’t worry.
The only minus point I can’t have a celebratory tipple for another 3 days! Alcohol ban till the weekend.
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Hello @Unclejack I have been following your dental story. I am so pleased to hear that it wasn’t the ordeal that it might have been. Thank you for updating us. I am sure it will be an encouragement to others too. You deserve a medal for all you have been through in my opinion! 
Warmest wishes, Willow
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@Unclejack So good to hear you’re doing ok ! And the tooth is out! 
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Hi @Unclejack oh, that is such great news.
Don’t forget to put that tooth under your pillow, I believe the going rate in 2024 has gone up from sixpence.
What a palaver you have had to go through.
I will raise a hot chocolate to you at the weekend when you can raise a glass back.
Take it steady and please do keep updating us.
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@Willow @Sisi @Erica @ChrissyD
Hi everyone.
I think the forum is so useful in supplying information and personal experience of facing a unpleasant foe. I wager everyone affected by any type of Leukaemia dreads any surgery dental or otherwise. I find in the NHS usually once you get to the frontline the service is good. BUT unfortunately getting to the frontline can be very frustrating. It took many months to get this tooth sorted out mainly because of my low platelets and the overwhelmed state of the hospitals. My haematology waiting area was absolutely packed every seat occupied yesterday standing room only. Once again thanks to all for the support
Best wishes unclejack.
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Hi @Unclejack @Erica @Sisi @Willow
That’s such good news @Unclejack !!!So glad you scraped in with your platelet count and didn’t need a transfusion. Also that you didn’t suffer with much bleeding post extraction. Much like my own 2 dental extraction experiences except I didn’t need a stitch!
As @Erica says, I hope the tooth fairy comes! It’s probably at least a fiver now with inflation. 
Have a restful few days and enjoy your glass of wine - when you’re allowed!
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Hello @Sisi,
I’m a bit like yourself, my OH was diagnosed earlier this year and I’m still struggling with this diagnosis and confused about… well everything!
The first symptoms appeared in February but yet after 10 months and 8 rounds of Azacitidine our consultants seem to be happy to just keep going. Watch and wait was never offered and I got the impression that it wasn’t appropriate.
He has rejected the idea of a transplant, he wasn’t sold it well.
His platelets only go up temporarily after platelet transfusion which he’s been having weekly for the last 8 months or so and consistently fall to 10 or less (otherwise no transfusion).
He’s stopped having nose bleeds since starting Tranexamic Acid but only takes one tablet a day.
I have had to buy some Complan because he’s lost weight and is not looking himself (very pale and sickly) He doesn’t have the energy he used to have and isn’t practicing his sport as much or at the same level, Although going up and down to the hospital at least twice a week and spending hours waiting for blood test results isn’t helping.
He caught flu during his last round of chemo and I had to call 999 he was so ill.
The hospital isn’t communicating with him properly. After blood tests they don’t often call him with the results until it’s too late in the day to do anything. They often just tell him that his platelets are low and he needs a platelet transfusion but not what the count is. When he asks them they don’t know. They don’t do a second blood test after transfusion so don’t know what his platelet count has increased to.
After he had such a bad dose of flu I told the consultant that he was vulnerable to further infection because he has no transport and was travelling to the hospital during chemo on London buses. She looked shocked and said that he should have been offered hospital transport, and that the nurse specialist would arrange it for him (she had previously told him that he would be ok on the buses but not to travel with the school children (this isn’t always possible because of the long waits for treatments)
Our chemotherapy unit operates a walk in and wait system how is this possible when some patients can be there for hours and others minutes so although the injection only takes minutes he can be there for hours until a chair becomes available. Now he’s using hospital transport I’m expecting even longer hospital treatments.
At no point since March/April has anyone ever told him about the disease itself! Yes he’s been given booklets but he doesn’t read anything. I’ve tried reading a little but I’m no academic scholar and have found the reading material to heavy for me to understand so he’s got no chance!
I’m just praying that the Azacitidine works for a very very long time and suppresses the Chronic myelomonocytic leukaemia (CMML). He’s 62 and my caregiver as I’m disabled with MS but recently the roles have been reversed and I’ve had to manage the best I can.
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Hello @Hellodolly Gosh what a journey you & your husband are going through. So sorry to read you are struggling. And your OH has been so poorly. It must be such a worrying time for you.
But so pleased that you have reached out here on this forum, as I’ve found it a massive help & support.
My first thoughts were that perhaps you could contact your OH’s clinical nurse & go though all your uncertainties & questions.
When my husband was given his diagnosis and ‘the booklet’, his clinical nurse said that we could call her and ask her any questions we may have. Well….I went home, panicked & accessed any information I could find on Chronic myelomonocytic leukaemia (CMML). Which I now know wasn’t this best thing to do, as a lot of it was overwhelming & scary. So I stopped! And found this forum. It’s been a great source of comfort. Especially @ChrissyD @Erica & @Unclejack
You have certainly opened my eyes a bit regarding travel to hospital / Azacitadine treatment. So thank you for that.
We have appt on Thurs re discussion about eligibility for partial stem cell transplant, which all sounds very scary And my husband not keen at all. And then appt in the new year to discuss alternative treatment of Azacitadine.
Do keep in touch on here & take care of yourself.
I’m sure the others will give some great advice
Best wishes to you xxxxx
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hi @Hellodolly and @Sisi
You’re both doing so wonderfully well - supporting your menfolk with Chronic myelomonocytic leukaemia (CMML). I’m sorry you both have such a “worry-load”, especially when you have care needs yourself @Hellodolly.
I understand that it’s often difficult to absorb reams of written literature about a complex disease and I’d recommend this video given by Dr Dan Wiseman -who is very much the go-to expert in Chronic myelomonocytic leukaemia (CMML) in the UK.
Your husband certainly needs to protect himself against infections whilst he is on Azacitidine so I’m really glad to hear he’s not “on the buses” anymore! 
(Schoolchildren aren’t the only carriers of infections though?! 
so that seemed an odd bit of advice?) Though, as you say, it will probably mean hanging about longer at chemo sessions waiting for hospital transport there and back. FFP3 masks might give him that extra layer of protection if he is indoors anywhere - especially in crowds or hospital waiting rooms! I gave a blood sample today and, apart from me, not a single other person was wearing a mask - not even the phlebotomists- and there was much coughing, sneezing, blowing and hacking going on in the crowded waiting room so I went and stood in the corridor. 
This close to Christmas I’m not taking any chances as I am immunosuppressed too!!
I feel so sorry for him not eating well, losing weight and being low on energy. Is this as a result of the treatment do you think? Have you spoken to clinical nurse re any anti-sickness medication that might help him and improve his appetite?
Hope it comforts you to know that some people stay on Azacitidine for many cycles - as long as it is benefiting them.
Thinking of you and hope things improve for you soon.
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@ChrissyD Thank you for support Chrissy 
Sounded a bit of a nightmare at the hospital for you today! But your comments have made me hunt out our masks here, so we’ll be prepared as we can be, for our hospital visit on Thursday 
I can’t believe it’s only a week till Christmas now! The Christmas frenzy is starting to heat up in the supermarkets 
Hope you can avoid it & have a relaxing time as possible
Best wishes to you xx
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@ChrissyD @Erica @Unclejack @Val59 @Hellodolly
Hi all! Just a quick update as we went to see Dr at St George’s hospital yesterday to discuss my husbands eligibility for Stem Cell Transplant. I have to be honest I wasn’t looking forward to it but we saw a wonderful Dr, who explained things so clearly & was very supportive. We were with her for an hour & asked lots of questions. She confirmed that he has Chronic myelomonocytic leukaemia (CMML)0 & it’s only the ASXL1 mutation that makes it potentially more risky to progress at some point to Acute myeloid leukaemia (AML). Basically she does not recommend that he has a transplant, as she thinks it will be too high risk for him, as he’s 73. So the plan is to go back to our local hospital at Kingston in January to discuss starting treatment on Azacitadine. He had blood test done yesterday whilst at the hospital & we’ve just had confirmation that blood work is all relatively stable, which is good to hear. We feel we can now move on to the next part of this Chronic myelomonocytic leukaemia (CMML) journey.
I hope everyone is doing ok & not getting too caught up with the Xmas craziness in the shops.? Wishing you all a good holiday season. And here’s to 2025 being a bright one. Thankyou all for your support Best wishes xxx
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Dear @Sisi
This is a difficult message to write (and detailed and long -so I’m sorry for that!) and clearly I cannot give you any advice but I am sharing various bits of information for you to consider and maybe to think again about getting that additional opinion before your husband embarks on treatment with Azacitidine.
I’m so glad that at least the stem cell transplant option has been ruled out. It would be a difficult decision for your husband to embark on this intensive, difficult treatment that has no guaranteed outcome -especially from the standpoint of not currently having any symptoms that need treating? Always hard to decide to make yourself unwell when feeling ok!
I was surprised that your husband has been given a diagnosis of Chronic myelomonocytic leukaemia (CMML)-0 as, since 2022, this category has been removed by the WHO and there are now only 2 categories: Chronic myelomonocytic leukaemia (CMML)-1 (less than 5% blasts in the blood and less than 10% blasts in the bone marrow and Chronic myelomonocytic leukaemia (CMML)-2 (6-19% blasts in the blood and 6-19% in the bone marrow). Less than 5% is considered normal.
The usual reasons for starting Azacitidine treatment would be either to reduce blast count (as soon as it needs reducing and usually as a pre-treatment for a stem cell transplant) or to reduce the need for blood transfusions. Since your husband does not have a high blast count (if the Chronic myelomonocytic leukaemia (CMML)-0 is correct) or need blood transfusions, I wonder what the rationale is for treating him at the current time whilst he has no symptoms? Is this something that the doctor explained? There are currently NO guidelines on good practice for managing Chronic myelomonocytic leukaemia (CMML) written by the British Society for Haematology.
However, the practical considerations of the treatment do need thinking about:
- Your husband has to go to a hospital for 7 days out of 28 for the foreseeable future. This is quite disruptive to normal life and other events, eg holidays, social events need to be planned around it. Hospital visits can be lengthy due to the pharmacy needing to mix up the drug on arrival and staff needed to administer it.
- In many cases, the person can suffer injection site soreness in their tummy
- Some patients experience severe nausea and vomiting which the anti-nausea meds do not combat
- The treatment lowers immunity as it depletes white cells and platelets which means you would have to be very careful about social contacts to avoid contracting infections whilst immune system is low.
So there are quality of life considerations to having this treatment. It is difficult to assess how long your husband’s disease might remain stable and enjoy his current level of health.
Here is a calculator for looking at the impact that various factors have on the severity of Chronic myelomonocytic leukaemia (CMML).Hopefully you have all the information needed to plug into this and find out your husband’s risk score and prognosis and likelihood of progressing to Acute myeloid leukaemia (AML).
Here is a link to results of a trial of Azacitidine for people with Chronic myelomonocytic leukaemia (CMML). Sadly the results were not very encouraging and Dan Wiseman confirms this in his video.
I only offer this information up to you as I have had wide experience of supporting people who have not fared well on intensive treatments and I am personally still deeply affected by those experiences. 
Hoping you manage to enjoy your Christmas. I’m feeling I’m on top of it -which is always a bit worrying!
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Hi @Sisi the Dr you both saw sounds so lovely and approachable, doesn’t it make a difference.
We are about over the holiday period if you fancy posting.
Be very kind and really look after yourselves
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@ChrissyD Gosh, thankyou so so much for taking the time to respond with all of this, I really appreciate it. No need for apologies at all. I mentioned to the Dr yesterday about the Chronic myelomonocytic leukaemia (CMML) 0 not being used anymore, but didn’t really get a definitive answer. So that is definitely something I will ask in January. And yes, I remember Dr Wiseman & yourself talking about the CPPS Mol calculator so that is also something I will look at. Not sure if I have all the information but if not, I will bring it up at our next appointment, along with the report on the trial of Azacitadine. Thankyou so much. I feel, infact, we feel, very empowered by all that you’ve said to go into the next appt with & will certainly bring all these important points up in January. AND…discuss the possibility of chatting with Dr Wiseman for his opinion. Thank you again, I really do appreciate your advice. It means a lot. Best wishes xx
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