I hope everyone is doing ok, now that the crazy hot weather has eased off. And everyone is managing ok?
Little update re my husband. We had routine Heamotology appt with our local team last week, who were happy with his blood counts, which seem stable. And they are happy to continue with active monitoring. He’s feeling very well in himself, so we’ve been making the most of it & getting out & about, visiting art exhibitions
We also had our 6 monthly telephone appointment with Dr Wiseman today, which went very well. Always so very grateful to be able to chat with him. He was also pleased to hear my husbands bloods were stable.
Some of you may be interested to know that he told us about a drugs trial now open in Manchester & Kings ( London ) for those eligible. It’s called PROSPERA & is a phase 2 clinical study comparing the drug pacritinib to Hydroxycarbamide for those with advanced Chronic myelomonocytic leukaemia ('CMML')
He didn’t feel it was appropriate that my husband joined the trial as he seems stable And was happy for him to continue on active monitoring.
So very good news to hear more research is underway for Chronic myelomonocytic leukaemia ('Chronic myelomonocytic leukaemia ('CMML')') patients! Let’s hope good things come from it.
Hi Sisi, Chrissy D, Erica, and all our fellow blood cancer patients.
Great news your husband is stable. As for myself having a bruising problem and purpura on lower right ankle. I had a really bad ankle injury over a year ago, the discoloration may be linked to that incident certainly my foot healed in a slightly different position than normal and still has slight swelling over the instep. Hopefully it’s not purpura. I have changed my telephone appointment to a face to face one so my consultant can have a look at that and the massive bruise on my forearm. Not to bothered about the bruises as usually they settle well. At last count my platelets were 49 so not surprising the occasional mega bruise occurs. Anyway blood test next week then appointment. On another subject my wife accidentally took two doses of ramipril blood pressure medication. She normally takes her statin and ramipril in the late evening She panicked and rang 111 for advice. She was told the two ramipril doses were toxic and to attend A and E immediately. We arrived at 10pm. 72 people were waiting for attention! The A and E was filthy feet, sticking to the floor etc. They checked blood pressure then at 4am took a ECG and discharged. Obviously the GP practices are doing very little and the hospital is simply overrun. No excuse for the filth but I couldn’t work under the pressure the staff are under. 72 people at that time of night in the middle of August! My advice be very careful taking medication it’s easy to miss a dose or take two doses. Best wishes to all hope everyone is stable Unclejack.
@Sisi@ChrissyD just posted a comment forget to it the little @ button so you might not get a notification. Sorry I think ages is catching up. Best wishes Unclejack.
So good to hear from you @Unclejack But sorry to hear about your bruising. My husband sometimes suffers from ankle bruising / swelling & also is prone to gout too. Sensible to get your clinician to have a look at it.
Your poor wife! That must have been very scary to have been told her medication was toxic! So pleased to hear she’s ok, even with the A&E visit. Not nice
Great news about your husband’s counts being stable @Sisi and that he’s feeling well and you’ve managed a lovely holiday on the Côte d’Azur and are now going out and about enjoying yourselves. Saw the photo of your feet on holiday on another thread!
And that’s an interesting sounding research trial -though not appropriate, as Dan W says, for people like your husband who are happily on active monitoring. If I were feeling ok and with no bothersome symptoms, I honestly wouldn’t want to rock the boat by taking a minimally-trialled drug! Bound to have some side effects!
Hope the cooler weather is making the excursions more bearable. Our house is still like a farmhouse kitchen prepping tomato sauces, courgette and tomato sauces and French beans for the freezer to use over the next year! Really haven’t enjoyed all these heatwaves and the constant watering of all the crops!
Sorry to hear about your ankle issues @Unclejack . Although I haven’t had purpura, I often have very frequent bouts of cellulitis in my lower legs -particularly in the summer when bare legs are more likely to get scratched or bitten by insects! Indeed, I also had the dreaded A and E experience as I had a burning hot leg, pain and swelling in my calf causing me to hobble about and yet I couldn’t see or remember any injury. Spent 5 1/2 hours in A and E on. Thursday evening, cannula in, blood tests for DVT markers, given an anticoagulant tablet and a prescription and told to keep taking them! Next day appointment at Same Day Emergency Care Dept. Another 2 1/2 hour wait to see yet another doctor (the 4th one!) who also suspected DVT but said they had no capacity to do an ultrasound that day (Friday) and booked me in for one on Monday morning at 9. Was hopeful this meant I would be seen straight away! What a fool I am! This time there was a 3 hour wait -had the ultrasound, then more waiting to see a DVT nurse who said my leg veins were all fine, no DVT and stop taking the tablets! Grrrrrr! Lots of pressure to take antibiotics -even though there were no markers or symptoms to support a bacterial infection diagnosis!
Anyway. I reckon it was another bout of cellulitis/inflammation and it’s on the mend now though still not able to walk briskly!
Like you @Unclejack A and E was rammed and being in such close quarters with sick people freaks me out! I got a chair and sat in the area where the entry doors kept opening and closing so at least I got fresh air -well apart from all the cigarette and sickly vape smoke from people smoking just outside - despite signs everywhere saying No smoking/vaping anywhere in hospital grounds!
Rant over. I’m sorry your wife had to endure the same. I feel so sorry for the NHS staff who were unfailingly polite but it must be so demoralising to see this endless parade of people -many of whom really shouldn’t be there taking up valuable doctors time. But equally, I’m sure there are ways that they could streamline some of the organisation and admin?
@Sisi@ChrissyD@Unclejack and all….great news that your husband Sisi is so stable. We always come away reassured having chatted with Dr Dan Wiseman. Interesting about that trial. Always hopeful when they start new trials. Let’s hope it’s a positive outcome. All ok with my husband although he tends to suffer from one thing after another! He had an infected finger that is taking forever to clear up, a sore throat/tickley cough (thinking it post nasal drip?), sore neck, shoulder, ribs and lower back! (All at different times) but right now he seems ok! Not sure if this is just getting older? Trying not to look into every ache and pain too much! Youngest is off to university in two weeks….trying not to dwell on how empty the house will be!
@ChrissyD my goodness! What an ordeal. Hope your leg gets better soon, reassuring it wasn’t DVT but it’s crazy how one doctor can say one thing and another (nurse) saying definitely not that! Sending lots of healing vibes to you and @Unclejack
Sorry to hear your husband Logsie is having a string of annoying symptoms. I don’t know how old he is but I’m 76 and I think I’m entering the “one darn thing after another” phase of life. When you’re not seriously ill but never quite 100%! I away used to be so fit and healthy, never went to a doctor and if I ever had anything it would be done and dusted in a couple of days. Nowadays, minor injuries seem to drag on for weeks, ditto chest infections and it’s just very tiresome! I’m even boring myself moaning about all the little health niggles! Worse still, because of my healthy and very long term diet and lifestyle choices, I feel very aggrieved and have a sense of injustice about it all! So unfair etc!
Am trying to decide whether it’s better to adopt a “mustn’t grumble” stiff upper-lipped approach or whether it’s more cathartic to carry on complaining and offloading? I guess we all have to take an approach that suits our personalities and outlook on life?
Oh empty nest syndrome incoming. It took a while for all of ours to flee the nest and they kindly (?) kept up a rota so that there was always one at home while the others were off to uni!
Hope it all goes well and he/she settles in well. It’s always a bit of a worry -on both sides.
@Logsie We can definitely relate to one thing after another!! Glad to hear your husband is doing ok at the moment And I can also relate to children off to university. Altho our little one went 5 years ago! Still miss him
@ChrissyD @Erica @Lyndam @Logsie @Unclejack & sorry to anyone else I’ve missed off!
And was happy for him to continue on active monitoring.
When you’re not seriously ill but never quite 100%! I away used to be so fit and healthy, never went to a doctor and if I ever had anything it would be done and dusted in a couple of days. Nowadays, minor injuries seem to drag on for weeks, ditto chest infections and it’s just very tiresome! I’m even boring myself moaning about all the little health niggles! 
It took a while for all of ours to flee the nest and they kindly (?) kept up a rota so that there was always one at home while the others were off to uni!
Yes, cooler weather has been lovely! Don’t we love moaning whatever the weather! 
Feel exhausted just reading all that!!! 