@Lyndam @Erica @Sisi @Heidi_BloodCancerUK
Hi all, just some info you might find interesting or useful. Just received my latest blood test results. Neutrophils doubled to 460. Platelets fallen back to 46, red blood cells fallen slightly, monocytes increased to 260 highest figure since diagnosis. White blood cells total risen sharply but still on normal range. Haemoglobin level fallen. As I expected my recent ankle injury and antibiotics used and anti clot injection have really had a what I would consider a detrimental effect on my immune system. I hate to think what they have done to my gut microbiome. As my haemotologist said a while back my platelets are that low a clot is highly unlikely.
If the ultrasound department worked at weekends that anti clot injection would probably not have been necessary. As concerns the antibiotics my leg and foot have improved slightly but the pitted oedema on my calf is slightly improved but not cleared yet. I have always avoided antibiotics if possible and I think my blood test proves avoid them unless itās a life threatening problem. No more blood tests until October then hopefully it will have stabilised. To be honest itās all extremely interesting finding out with concrete proof the effects of medication can have on the immune system and bone marrow. Pity the ultrasound clinic doesnāt work weekends perhaps the anti clot injection may have been avoided. Admittedly a clot can be fatal so who knows.
Another interesting figure from the initial blood test carried out before the anti clot injection was my platelets hit 74 double the recent levels but have now halved and returned to their normal level of mid 40s. Shows how the body reacts to bleeding. It really highlights what a amazing structure our bodies are. We are designed to survive. Perhaps we are the result of divine intervention? Certainly seems to me something very powerful was involved in our evolution. Just a cautionary tale I read that pomegranate could support platelets BUT they can react with statins so back to the drawing board!!
Hope you are all as well as you can be best wishes unclejack.
P.S. I hope Chrissy D. who is not a fan of antibiotics comments on my post. I am not anti antibiotics but I do believe they should be used sparingly.
@Unclejack Iām so glad to hear your calf & ankle are improving. And yes very interesting reading / analysing blood tests / along side other medications. My husband is now on anti platelet / aspirin after his surgery. Fortunately his platelet count has been ok 
When we saw Dr Wiseman he was saying that from a Chronic myelomonocytic leukaemia (CMML) aspect, itās often spotting blood ātrendsā over a period of time rather than individual counts. Itās amazing how much they can change! Wishing you a happy wkd. Best wishes x
Hi @Sisi @Unclejack @Erica @Logsie @Lyndam
Hope all well with you all? Iām personally much relieved that the temperatures are cooler now!! Really donāt function well in the extreme heat!!
A propos of antibiotics. My thoughts:
There is no doubt that antibiotics are life-savers for treating bacterial infections. There are not many (if any?) other drugs which can actually cure a disease and those of us who are immunocompromised with low neutrophils have good reason to be thankful for their availability.
The difficulty is that overuse has caused massive antibiotic resistance and therefore the NHS has tried various strategies to reduce inappropriate and over -prescribing -especially in primary care. Without a test. no doctor can categorically say whether e.g a chest infection is viral or bacterial . Most are actually viral. I learned recently (as a member of my GP practice patient participation group - PPG) that GP practices do not pay for prescriptions from their own budget. It is all funded through the NHS. Therefore GP practices do not have financial incentives to reduce prescribing! There is a simple blood test kit to check something called C-Reactive protein which can distinguish between viral and bacterial infections but GP practices would have to pay for this from their own budget! In response to my questions about this the GP rep in the PPG said that they were more fearful about being sued for NOT prescribing antibiotics (in case of a poor outcome) than they were concerned about over prescribing!
So I imagine that clinicians are usually more likely to err on the side of caution and give antibiotics than risk and immediate adverse outcomes!
If only there were better, cheaper, quicker methods of determining exactly which pathogen is causing the illness or injury so that we get a targeted antibiotic -not the broad spectrum ones which cause havoc with microbiome - or none at all if not bacterial!
Meanwhile, itās all risk-benefit analysis and most of us find it hard to decline antibiotics if we are immunocompromised!
Iām still suffering awful IBS symptoms which seem to have started after amoxicillin prescribed end of March (which didnāt even touch the chest infection!) But because I was on holiday, there wasnāt time to get a sputum test to find what was causing it and, if bacterial, getting the exact antibiotic to fight it!
I hope @Unclejack that you gradually get back to better fitness and your blood counts reset themselves. If youāre still fighting an infection, your white cells will be up until itās gone!
Hi @ChrissyD I hope you feel brighter soon & your IBS symptoms get easier. And yes, lovely to get a heat respite at the moment! Hope your weekend is a good one 
Hi @Unclejack good to hear your leg is finally on the mend. I was not aware what affect antibiotics had on Chronic myelomonocytic leukaemia (CMML). Iām learning things all the time from the forum. Hope you are having a good weekend, take care.
Iām not good with the hot weather either, I suffer with oedema in my ankles much worse if the weather is to hot. Thankfully I am reasonable well at the moment. Iām not one for writing much on the forum as I never know what to say. That is why I like the zoom calls as I am a people person and like to be around people. Hope you tummy troubles soon are on the mend. Take care.
Lynda
@Lyndam @Sisi @ChrissyD
No doubt antibiotics are definitely life savers. Especially for we vulnerable. Unfortunately it seems every action has a reaction. I have just developed a known reaction to antibiotics. Their effects killing good bacteria in my gut have led to a mild infection (not serious or life threatening). I am now eating foods to repair hopefully the gut microbiome. I was amazed my neutrophils hit 472 doubled from previous readings. And immediately after my injury platelets doubled to 72. Never mind still well and thatās the main thing. Looking forward to next blood test to see if everything is settling down.
Thanks to everyone for their comments especially ChrissyD. Best wishes unclejack
Oh @Unclejack and all what complex, very special, unique beings we are.
Hi @Sisi @Willow @Unclejack @Lyndam @Logsie
Just checking in to see how everybody is doing?Hoorah. Itās rained here at last so no watering for a couple of days! And cooler too.
Though also posting about my latest antibiotic dilemma. To take or not to take. That is the question! 
We have been doing a lot of babysitting recently. School shows, my oldest grandchild viewing secondary schools, sports days! All go. However, my husband picked up a heavy cold from grandchild who was well when we were looking after him but developed a stuffy cold and sneezing the next day! Then 48 hours later, I got a hideous sore throat and constant sneezing and nose-blowing! Both of us Covid -ve. I have been monitoring my temperature and itās been bouncing around between 36.9 and 37.8 but hadnāt hit the 38 degrees. I developed a cough on Thursday night and thought maybe I ought to visit GP on Friday to set the ball rolling on a sputum test in case things deteriorated. Got a GP appt. He took my temp and it was 38.1. I was quite surprised as Iād taken mine at home just before and it was 37.6! He then started on āwell youāll need to go to A and Eāā¦.I know this would be official advice but the thought of hours in A and E fills me with horror. Heād listened to my chest and said it was clear but, whilst agreeing to send off sputum sample, wanted me to start on a course of antibiotics straight away! I explained the bad effect I have been suffering with on my IBS since April and said I would rather wait to see whether sputum test results and if I even have a bacterial infection? Could be viral for all we know! He was quite insistent so I have the prescription but Iām monitoring my temp -down to 37.2 this morning- and my general symptoms and will only start the antibiotics if I feel worse! My oxygenation on the pulse oximeter is 96-98%. I just wish there was more clarity over this temperature issue. Surely if temp is generally under 38, one isolated reading shouldnāt warrant an A and E visit? What would they do? Just prescribe antibiotics? Seems pointless.
Anyway. I feel really annoyed to have picked up what for most people is just a pesky summer cold. I usually rely on the summer months as my āsafe placeā! My husband is virtually clear of his after a week and didnāt even get the cough but then he has a normal immune response!
Hope @Unclejack you are gradually improving.
Thereās a Chronic myelomonocytic leukaemia (CMML) meeting online with Leukaemia Care on 31st so hope to see some of you there.
Take care all
Chrissy
X
@ChrissyD Iām totally with you re antibiotics. Really against them if possible. My 17 year old son is going through a spate of eczema/psorisis which was initially treated with antibiotics as it was infected but those antibiotics have upset his gut and now has even worse skin as your gut regulates skin! So weāre trying to manage it ourselves but getting a 17 year old lad to consistently apply creams etc is a struggle! 
Like you say what would A&E do? Prescribe antibiotics! Sounds like you may be over the worst of it? If your temp is coming down? Plenty of fluids, rest, loads of broccoli, and strawberries! Hope you start to feel better soon x
Hi @Logsie
Something odd happening on the Forum as I did a reply and it took ages saving and then disappeared?! 
Anyway, just to say sorry to hear about your poor son.. Skin problems are very embarrassing -especially for a 17-year old who is probably very self-conscious about looks! 
Hope you are seeing a skin specialist as I think there are better treatments for psoriasis now? Sorry it also affected his gut. Thereās always a downside isnāt there?
My temp now down to 37.1 so even allowing for discrepancy with GP thermometer, I am hopeful that itās on its way down! Still coughing and feeling rough though!
@ChrissyD Oh gosh, sorry to hear youāve been poorly. I hope your temperature manages to behave itself & youāre back to your normal self soon. Youāve sounded very busy 
And yes, so pleased itās rained here. I nearly stood out in it earlier! 
All good with us thanks. My husband is slowly recovering well. Part of the post op appts was being fitted with a 5 day ECG to check for any heart issues & weāve got heamatology appt coming up too( & another bone marrow biopsy 
)So itās all go! In fact Heamotology appt is on the 31st, the same day as Leukaemia Care zoom meeting, so we wonāt be able to attend sadly. Iām tempted to ask if we can log on during my husbands appt! Would appreciate any feedback that we may miss? Thanks 
Best wishes & love to all @Logsie Hope your son is ok.
Hello there @ChrissyD
So sorry to hear that you have been feeling unwell. I can understand your frustration around escalating your symptoms to A and E but I suspect the GP is being cautious due to diagnosis you have. Really good to hear that you are monitoring your temperature and home and oxygen saturations. I do hope you are also feeling better in regards to your symptoms?
Having the sputum sample results will back will be helpful in understanding why you have these symptoms.
In our Infection symptoms and what to do | Blood Cancer UK webpages (where we have consulted with Haematologists and A and E Consultants) we say in regards to temperature checks:
Most treating teams will advise you to check your temperature if you feel unwell and get advice if it reaches 37.5Ā°C or goes below 36Ā°C.
This is a good guide, but remember that normal body temperature can vary from person to person and between thermometers.
Paracetamol, steroids and aspirin they can mask a fever, so tell emergency staff if you are taking these medicines.
Symptoms and temperature levels are both considered when advising people with blood cancer on how to manage their potential infections.
I do hope you feel better soon and donāt hesitate to call your healthcare teams if your symptoms worsen.
Take good care
Gemma
Hi @Sisi
Good to hear your husband is being so closely monitored. Oddly enough my husband yesterday heard that his 78 year old female cousin was found to have plaque in her carotid artery so no doubt she will soon be being ādescaledā!
Hope the haematology appointment goes well too. Itās odd how his other issue of the mini strokes have booted the Chronic myelomonocytic leukaemia (CMML) lower on the āworry listā!
Iāll update you on the meeting -although Nick York does a superb job of summarising the meeting to all those who are registered.
They had to postpone the annual allotment social today! Quite ironic that ārain stopped playā after all the months weāve been flogging ourselves with watering! Someone is having a laugh!!
Thanks for helpful info. I understand why doctors want to cover themselves and play safe but they donāt always seem to appreciate the implications of their advice. I think Iām sensible enough and know my own body well enough to know when Iām in trouble and I certainly would go to A and E if I had any of the indicators of sepsis and similarly, I would risk the adverse side effects of antibiotics if I was struggling with an infection but I currently feel I am safe to delay a few days and await the test results. It may even be that I feel better by the time the test results come in, so wouldnāt need any treatment. Hereās hoping! 
@ChrissyD Thankyou 
I hope your husbands cousin gets on ok with her artery. We were told that they dont like doing the operation unless itās severely furred up, apparently over 70% restricted. Otherwise theyāll just medicate it. My husbands was 90% on that side!
And yes, thatās a good point re Nick, thanks. Heās is so very good 
As you can imagine a lot has happened since we last saw the Heamotology team in Apri! Feels like a lifetime ago!
Iām not sure if the rain here has made it feel cooler! Bye for now
hi @chrissyD. Sorry to hear you have not been feeling so good. Hope you are soon on the mend. Iām looking forward to the next Chronic myelomonocytic leukaemia (CMML) forum.