@ChrissyD
Hi Chrissy D.
Firstly I was absolutely amazed at your dreadful symptoms at the start of your Chronic myelomonocytic leukaemia (CMML). All I suffered was dodgy blood test results and that is as far as I am aware the only symptoms I had.
Inspirational your reaction to all this.
Your reaction to antibiotics and possible heavy bleeding is exactly how I have felt. I said to my wife if my platelets are stable in the 50s I won’t take medication until I am absolutely obliged to.
I am of the opinion if blood tests are stable keep away from medication that could disturb that stability. Everybody reacts differently and at present I am on a very steady path and it is coming up to 3 years that my first blood test rang alarm bells. As you have said research into
Chronic myelomonocytic leukaemia (CMML) is very thin on the ground and your massive experience of Chronic myelomonocytic leukaemia (CMML) is invaluable.
As a world renowned oncologist professor explained a short while ago everyone has cancer cells which usually are destroyed by our immune system but over age 50 our immune system begins to get exhausted, that’s why most cancers show up after age 50. My rather odd experience is I don’t seem to get ill hardly a cold hopefully that continues. I have made a positive effort and changed my diet to include many foods that are anti inflammatory and antioxidant. I am not on medication so no chance of interactions. I do supplement with vit D after my GP gave me a test and now my level is satisfactory. Anyway hopefully leaving medication out will not be disastrous. I will keep the pills on standby and will probably use the mouthwash variant of the medication. Thanks ever so much for your comments.
Best wishes unclejack.
P.S. I am 74 on boxing day and still ride a exercise bike and we still go long walks so perhaps I’m doing something right? My only other problem is arthritis so up to now quite lucky.
Hi @Unclejack. So glad to hear how well you’re doing too - 3 years down the line with your blood counts being improved and stable. I’m just a few months over 74 and still working on a very large allotment, harvesting and preserving our organic produce for eating throughout the year, walking (at least 4 half-hour round trips a week for grandchildren school pick-ups!!) and dodging coughs and colds and Covid!! I hope the dental treatment isn’t too uncomfortable for you and you’ll enjoy your birthday on Boxing Day. 
@Sisi Sounds like a great excuse for a visit to your son!! 
@ChrissyD Yes! 
Indeed! x
@Erica @ChrissyD
Hi folks dental update. Had another blood test today.The first blood test last Monday had not been analysed due to haematology not accepting it’s validity! INEXPLICABLE but there we are. Had my second test at 10 40 am. . . . Dentist said results would be back in about 3 hours. He also said haematology would advise on the dose of transamic acid to quell any bleeding. I will ring you this afternoon he said and issue a prescription. Unfortunately no communication whatsoever so am frustrated again. The extraction is due to take place on Monday next at 2 pm. Obviously this will not happen as no advice on treatment has yet arrived from haematology! So no doubt I will have my blood test next week and another appointment for the extraction, which undoubtedly will not take place. The simple fact is these people haven’t a clue how to treat Leukaemia patients. I the patient seemingly has to organise treatment. Communication between depts is obviously non existent. Clueless would be a compliment. I wonder how many have passed away at the hands of these people over the years. To say the NHS is broken would be a understatement. I am thinking of just going to a private dentist say nothing of my condition and take the risk. Little use complaining to the hospital as in my experience they close ranks and defend these failures with cover ups. So one loose and broken tooth can defeat a NHS hospital completely.I would like to know what the cost to we tax payers has reached for one tooth. If this is typical multiply our 70 million plus population by the number of teeth we all have and I dare say our already bankrupt country would be double bankrupt. Anyway no doubt I’ll soon be commenting on episode 4.
Best wishes unclejack.
Ohhhh @Unclejack I don’t know what to say.
Hi @Unclejack and @Erica
We feel your pain Uncle Jack! So frustrating. The NHS is in a right old mess. My brother and I between us have spent several hours over the past couple of weeks hanging on the phone to try to cancel an eye clinic appointment for our 96 - year old mother which has inexplicably been made for a hospital 45 minute drive away which she cannot attend as she is immobile! We have tried several phone numbers but not even able to leave voicemails -just endless Muzak for over 30 minutes before giving up! No doubt she will get a snotty letter telling her she has missed her appointment! If they invested in more lower paid staff to answer phones, it would save missed appointments that waste a highly paid consultant’s salary! We’re always getting told not to miss appointments but it seems impossible to speak to a human “bean” to confirm a cancellation!
I just hope it all goes ahead next Monday. 
Hi @ChrissyD do you think your mother’s hospital PALS (Patient Advice and Liaison Service) might be of assistance, I would hate to see your mother get a bad mark against her.
Oh, the repeated Muzak.
Hi @Erica. Thanks for your suggestion but we’ve got enough to do without contacting PALS! This is a systemic failure at our local hospital and I doubt PALS can change that! My mother is not really bothered about getting a black mark as she is 96 and doesn’t really want any more treatment as it’s such an effort for her and my brother to get her to an appointment. We’ve all tried our best to cancel the appointment but if the phone system won’t let us do that -it’s too bad! When you multiply up the number of appointments in the UK that are missed because of this system failure, no wonder the NHS is struggling!
@ChrissyD @Erica
Just had a phonecall from dentist about blood test results. Unfortunately platelets have fallen to 41. So back to hospital 9 am Monday. Another blood test. If platelets have returned to above 50 extraction will take place with no further interventions
. If they remain below Fifty then a unit of platelets will be transfused then extraction will take place. Lowest platelet level I have had. At any rate the tooth will be removed at 2 pm Monday. Our wedding anniversary today probably our last one unfortunately.Very depressed at this after being stable since diagnosis.
Best wishes unclejack.
@Unclejack I am willing your platelets to increase! Sending you love & best wishes. I hope you can find time together today if you’re able, to do something nice for your anniversary. And I hope the sun is shining for you there. If not, I am sending sunshine & blue skies to you now! Take care xx
Oh @Unclejack it is just one thing after another for you at the moment.
If I could send you some platelets I would.
We await further updates.
Happy anniversary to you both, spoil yourselves. xx
@Sisi @Erica @ChrissyD .
Hi Erica, Chrissy D, and s120.
Thanks very much for your support.
I contacted haematology had a very good chat with the nurse. She was excellent and gave me all of the blood count data. Every other level was stable or slightly improved. Just the platelets the fly in the ointment. She advised me to carry out my normal blood test for consultant next Thursday. She said it would highlight the effect a platelet transfusion had if transfusion necessary So that will be the 4th blood test in 10 days. Platelets have a limited life of around seven days apparently. Sorry for winding myself up but I am obsessed with this blood cancer. I hate losing a battle of any kind. A real bad loser. It runs in my family. Myself and my brothers fought each other over every board game available if we didn’t win. Unfortunately they’ve all passed away now. But I remember losing at table tennis and the table tennis bats being used as weapons to fight with. As I said real bad losers. Anyway 9am Monday blood test, to be followed by platelets transfusion if platelets still below 50. Then extraction at 2 pm. Will update hopefully Monday evening. Once again thanks for all your support.
Best wishes unclejack.
@Unclejack Thats really encouraging to hear the rest of your blood work is doing well 
All the best for Monday xx
@Unclejack @Erica @ChrissyD Just changed my user name to something a bit friendlier! Have a good wkd everyone xx
Hi @Unclejack I am so sorry that this is upsetting and depressing for you but you know from past experience that your counts can bounce around a bit and it could well be that your platelets do manage to get over 50 on Monday. If not, then one platelet transfusion will enable the dental work to go ahead and you can relax a bit and be “mouth-ready” for Christmas! 
It’s hard not to catastrophise (I know 'cos it’s what I do!) but, given how stable your disease has been, I’d guess you will see more wedding anniversaries and I’ll raise a glass to that!
Something you might enquire about is whether there is any indication of “platelet clumping” in your blood tests as this can make the platelet count seem lower than it really is. The solution to this issue is apparently either to have the blood collected in a citrate solution which prevents clumping, rather than the normal EDTA solution (purple top here), or alternatively use a test called Thromboexact which measures the platelets more accurately. I only know about this as my Professor requested these different tests as I did have an incidence of platelet clumping in my blood film.
Wishing you well today.
Hi @Sisi. Thanks for the update. I’m too dopey/lazy to think of a witty or cryptic username so I’m just here as me!
Hopefully you’ll have received an email from Leukaemia Care following the meeting last month -with Dr Wiseman’s slides and some useful links to info about Chronic myelomonocytic leukaemia (CMML)?
Hope your weekend is good. It’s writing Christmas cards and sending e-cards for me and making some mincemeat and a Christmas pudding -for everybody else to enjoy as I’m flippin’ gluten-free and it’s the bane of my life! 
My IBS and the gf diet give me more hassle than the leukaemia to be honest! 
Oh @Unclejack this has been playing on my mind all day so I feel I know you well enough to ask you why you felt it was probably your last anniversary, has someone given you or your wife that prognosis?
@ChrissyD To be honest I think I was in such a daze when I first set my account up, I hadn’t realised what I’d put as my username! 
Thanks so much for flagging up re the Leukemia care email, as I’d got the first one saying that the slides were imminent, then have only just realised the second email had gone in my junk folder! Will look at them over the weekend.
Also thanks again for the info you sent the other day about the stem cell transplant videos on the Myelodysplastic syndrome (MDS) website. They were really useful & scary! BUT we both feel a lot more prepared for the appt with the stem cell team at St George’s ( which has now come thru for 9th Jan ) even if it’s to rule it out.
And yes, I guess I should start Christmas card writing too! The weather looks to be awful over the next few days, so it may well be a stay at home sort of weekend. Gosh IBS can’t be fun 
But your Xmas pudding making sounds yummy & I’m now very hungry! Take care xx
@Erica
Hi Erica
Unfortunately after witnessing my elder brother die at the age of 36 of pancreatic cancer, Two cousins died within three years of each other of breast cancer. Another auntie died of kidney cancer, another auntie died of breast cancer, it makes you think your family are fated to develop this dreadful cancer disease and die. I was told on the day of my diagnosis that this version of Leukaemia is only treatable with a Stem cell transplant and at my age I was to old. Also I was at high risk of mutations. I must admit since the age of about 23 when this experience of cancer
started in my family it became obsessional wondering when my turn would arrive. Luckily I was 72 when diagnosed a lot older than my relatives. Strangely my late brothers wife developed brain cancer and passed away at the age of 59. I have spent years searching for the first signs that my turn had arrived. It sounds crazy but it’s the truth.
Best wishes unclejack.