Hi Erica
Yes always at weekends! I have had prior experience of these before, the last one 3 months ago resulting in my clopidogril blood thinners being stopped this was just one month before diagnosis. Also I do sometimes get blood blisters in the mouth especially after eating crisps etc. For myself this has happened occasionally for years before my diagnosis.
So although I am concerned it may just be one of those things hopefully. I had blood test last Thursday and will be seeing haemotology the coming Friday. On reflection I suppose low platelets could well make these situations worse. I was hoping for perhaps a small increase in platelets especially as those tiny red blemishes on lower legs have disappeared since the blood thinners were stopped. Still feeling well and carrying on with my normal activities. Thanks for your reply.
Best wishes
Unclejack.
Hi Erica Lyndham Chrissy D
Attended GP this morning concerning sub conductive bleed in eye. Nothing to be overly worried about and hopefully will soon settle.
GP looked at blood test results from last Thursday. This was worrying me somewhat.
Anyway platelets had risen from 56 to 61, nutrifils had risen from 1 to 1.5 and red cells were stable at 11âŚ7 These were the highest they had been for many months. I felt quite pleased. Of course I realise blood counts fluctuate, but at least at this time they are fluctuating in what I would call the right direction. So this Friday when I see consultant
hopefully no worrying news. Seems nutrifils are approaching the lower range of normal and another small increase in platelets. They Hit a low of 46 in May then recovered to 56 a week later and now 61. Feels a lot better than the fall in levels.Hopefully everyone is still reasonably well.
Best wishes
Uncle jack.
Hi @Unclejack I am glad that you feel quite pleased with your results and that there was nothing to be overly worried about with your eye bleed.
Please let us know how it goes on Friday with the consultant.
Take lots of care
Hi Erica
Thanks will do
Best wishes
Unclejack.
Hi unclejack.
Thatâs good news that your blood levels have improved. From time to time I get the blood blisters in my mouth that you mentioned in your previous mail. And I am glad that we have all given you a bit of a lift to keep your spirits up. We are all here to help one another on our journey with this disease. Take care.
Hi Lyndham
Thanks for your reply. I always seem to have this habit of spearing my mouth with crisps or in this case it could have been crusty bread or just the low platelets. As my wife always points out I eat like a pig! So iit was possibly self inflicted. Hope you are well
Best wishes
Unclejack
Hello All
Sorry youâve had a bit of a worry with the eye bleed @Unclejack. I have heard of this many times with people who have low platelets. It must be a bit scary?
But, on the upside, your blood counts seem to be on the up and the neuts at 1.5. sound good! Mine are around 0.5 - 0.8 and they do fluctuate a bit.
Iâm involved as a patient representative with a clinical trial for people with Chronic myelomonocytic leukaemia (CMML)-2 who have not previously been treated with Azacitidine . It is called the AMMO trial and is testing a drug which is an oral form of Decitabine which is very similar to Azacitidine which is used in the UK in Myelodysplastic syndrome (MDS) and Chronic myelomonocytic leukaemia (CMML). I offered to advertise the trial on this Chat Forum. Here is the website link for it. Dr Dan Wiseman whom I mentioned previously is the Chief Investigator. The link has a Plain English Summary and lists who could be included and who would be excluded from the trial:
https://www.isrctn.com/ISRCTN30808508
And these are the sites that are currently open or about to open for recruiting.
-
The Christie, Manchester-Open -
Churchill hospital, Oxford-Open -
Belfast City Hospital, Belfast-Open -
St Jamesâs, Leeds-Open -
QE, Birmingham-Open -
Aberdeen Royal Infirmary, Aberdeen-Open -
Kingâs College Hospital, London-Open -
City Hospital, Nottingham-Open -
Southampton General Hospital, Southampton-Open -
University College London Hospitals (UCLH), London-Open
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University Hospital of Wales, Cardiff-Site in set up
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Beatson, Glasgow- Site in set up
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Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield- Site in set up
Hope this is helpful for anybody who might be thinking about taking part in a clinical trial.
Best wishes to all of you
Hi All
On another topic, I got a blood test done yesterday for Next Generation Sequencing. Just got confirmation that the blood sample arrived safely today at Addenbrookes and is in processing - thanks to an eye-watering postal charge for Next Day guaranteed delivery! 6 week wait for results and hope my mutations are behaving themselves!!
Best wishes to all
Chrissy
Hi Chrissy D
Many thanks for that information. I attend haemotology today. I am on watch and wait at the moment. Hopefully my latest blood test may mean I carry on with watch and wait.
I feel great have absolutely no symptoms yet,and if it wasnât for the abnormal blood tests wouldnât think there was anything wrong.
Once again thanks for the info. Hopefully all our fellow Chronic myelomonocytic leukaemia (CMML) patients are keeping well.
I will post about todays appointment later.
I intend plotting my journey regularly hopefully it just might help others.
Best wishes
Unclejack.
Chrissy D/Erica/Lyndham Hi.
Just returned from haemotology. Blood count confirmed, at Nutrifils 1.59, Red blood count 12.7 and platelets 61. Doctor happy that everything is stable in fact a improvement over last appointment. Being left on watch and wait strategy. Doctor asked why I hadnât had the second bone marrow biopsy. I pointed out that when I attended for second biopsy I was told it wasnât necessary. This info hadnât been updated on the computer. She left to query who made this decision. Apparently the consultant made that decision. She was not happy because the first biopsy result clearly said not enough solid material to complete diagnosis.
Apparently my case will be discussed at a department meeting in two weeks? Seems communication isnât very good in this dept!
They seem to be overwhelmed with the number of patients and so few doctors. I can well see why our NHS is struggling. My doctor was bombarded with phone calls and interruptions all through our consultation. And with English clearly her second language it is difficult to ask questions with all this activity. Anyway I attend haemotology again in about 10 weeks⌠As an aside the blood blister in my mouth burst this morning just as set off for my appointment.
I pointed this out to the doctor who was more concerned about it than me. She was concerned about infection and suggested antibiotics. After a discussion I declined mainly because I only wanted to take antibiotics if it was absolutely necessary. I already had been using salt water to wash my mouth and was scared antibiotics may effect my slowly improving nutrifils. But she did say any sign of infection straight back to hospital. My eye is beginning to settle. I have a red card to use if I have any problems. My mouth has stopped bleeding. I am quite happy with todayâs appointment but I can see the dreadful environment our NHS staff are working with.
But I still believe communication between the doctors could be improved. After all blood cancer is very serious.
Best wishes to you all
Unclejack.
Yes, @Unclejack I am glad that you are staying on watch and wait and long may that last.
I also had a blood blister in my mouth not so long ago and I did not need antibiotics.
The lack of documentation by someone and confusion caused is hopefully a learning point for all.
All in all perhaps a bit of a celebration tonight, I celebrate all the little wins, take care and please do keep posting.
Hi Erica
Once again thanks very much for your support.
It has been a stressful week but has ended quite well. Yes a small celebration is planned!.
Stay well
Best wishes
Unclejack
Hi Unclejack
That is very good news, I am due back to haematology on the 21st of August so hopefully my bloods will remain stable. Long may we be on watch and wait.
Hi Lyndham
Thanks for your support. Hopefully you will have some good news next month. I think we all get wound up and worried as blood tests near. Today I was really down even though my GP accessed my blood test results Monday last and everything thing seemed fine. After the initial elation I thought what if she misread the results, what if thereâs something nasty lurking in the results. I must admit the doctor was not happy about the second bone marrow biopsy not taking place as requested. She believes the solid part of the procedure is important but seemingly overruled. On reflection tonight I was thinking it itâs not important why do it in the first place. It certainly doesnât boost ones confidence! My first doctor who I thought was a consultant is actually the registrar. In the chain of command I think a consultant out ranks a registrar. As yet I have not seen a consultant. It all seems confusing. But at least we have this forum and blood cancer UK to fall back on. Perhaps my haemotology dept. is not typical of the majority of haemotology depts and at the end of the day we are all living in hope of a good outcome.
Stay well
Best wishes
Unclejack.
Oh @Unclejack you describe so brilliantly that emotional rollercoaster many of us are on, why canât we just stay with the positive thoughts and feelings and not get those niggling negative thoughts and feelings.
After 19 yrs I still feel the same as you.
That is why I need our form.
Hi Erica
I have always had a cynical outlook on life and a pessimist attitude. Quite frankly I am surprising myself that as yet depression hasnât completely overtaken my outlook. On the other hand my very enquiring mind is approaching things as not just a battle but a challenge to defy the odds. One thing that settles my self sympathy is the fact at the age of 72 I have a lot to be thankful for. Itâs the young and very young afflicted by cancer that deserve all the consideration and support they can get.
At least at present all of us who are commenting seem to be holding our own. My GP has been very supportive and helpful for that I am very grateful. After months of tests prior to her arrival no one seemed very interested in my symptoms. She referred me to haemotology after getting the results of my first blood test under her supervision. Even so it took another seven months for a diagnosis.
I think one thing I have learnt over recent times we have to take matters into our own hands especially health. It seems many health providers in our system leave a lot to be desired. Having empathy to patients is very important, as yet only blood cancer UK and our forum seem to understand the journey especially the mental journey we are going through.
Stay well
Best wishes
Unclejack.
@Unclejack I was diagnosed 19 yrs ago, at 53 yrs old, and my 70th birthday, just before Covid, was my best ever, helped by Colin the Caterpillar cakeâsâ
I have had several GPâs and consultants since then with varying empathy skills.
Yes, I have also learnt to take responsibility for my conditions and medications and informing everyone from opticians, dentists and all GP and consultants.
Best wishes
Hi Erica
I hear you love your music. Recently on u.tube heard the most amazing cover of Simon and Garfunkels brilliant sound of silence. Itâs by a group called disturbed. Mind blowing arrangement . Unbelievably powerful. Trouble is both me and the wife are now addicted to it.
Apologies Erica forgot to sign my post
Best wishes
Unclejack.
Thanks so much @Unclejack I will have a listen to it, yes I am a girl for my music and I have a feeling you both are too.