No HU e-mails

[dougstalbans]

Second successive day that my CLL friend and I have received nothing from HU. How far is this affecting everyone in the UK at least?

[sue6741]

I haven't had any either and in UK

[mrsjsmith]

Nor me U.K. as well. Assume HU knows there is a glitch again somewhere.

Colette

[Zeus52 in reply to mrsjsmith]

I haven’t either - UK also!

[AnneHill in reply to mrsjsmith]

I havent had any. I couldnt get into HU last night. I was reading a post and went back to it yesterday evening. I cant find it now. It was headed Zanubrutinib but the person mentioned platelets and there is a problem where the cll is in remission but your immune system is attacking the platelets. I might have that and I cant remember what its called. Anne uk

[AussieNeil Partner Administrator in reply to AnneHill]

Anne, I presume that you tried to find a likely recent post with the search words zanubrutinib+platelets healthunlocked.com/cllsuppo...

or with just zanubrutinib

healthunlocked.com/cllsuppo...

I couldn't see anything along what you are describing, which is ITP or Immune-Thrombocytopenia as described here:

my.clevelandclinic.org/heal...

Neil

[AnneHill in reply to AussieNeil]

Thankyou, I have had cll since 2001 and have had fcr and ibrutinib. The haematologist decided to take me off the ibrutinib in March.In the last 6 months I have had 4 uti's and stomach problems. The hospital were monitoring me and recently I had noticed my platelets were 61 from 112. A different haematologist from usual was disinterested and said they didnt worry. That was a phone consultation.

I went for ivig and mentioned I had bruises on my legs and the doctor came and looked at them. They realised my platelets had halved and she wanted me to come to the clinic in 8 weeks. She said I was in remission and it could be ITP. As she had to get back to the wards I presume she will look at my next blood test and the doctors will decide what to do.

I couldnt find info online and when I saw a post from somebody I started reading it but needed to come back and read it later. I couldnt find it and couldnt remember what the condition was called. I was told when I was taken off ibrutinib that when I needed treatment it would be Venetaclax or Zanubrutinib. Im reading about Zanubrutinib whenever I can.

The website you showed gave me the ITP Info I wanted. Thankyou, Anne uk

[AussieNeil Partner Administrator in reply to AnneHill]

Anne, I hope you are now having more frequent blood tests. If signs of low a platelet count increase or worsen, please promptly follow up with your specialist. With CLL, platelet transfusions aren't given until the counts fall below 20 if the patient has an infection, otherwise the threshold is 10.

Neil

[AnneHill in reply to AussieNeil]

The doctor at ivig at the hospital said platelet transfusions wont last if my platelets are being destroyed. They are seeing me soon and I will ask for my GP to do an extra blood test. It was a shock when I noticed they had dropped so quickly. Thankyou.

[mrsjsmith in reply to AnneHill]

Anne are you having monthly IVIG ? I am and they take bloods for a full blood count first. I have MyChart now so I can read results online, but before that I would always ask for a printout before leaving, and the nurse or available doctor would look at them first.

Colette

[AnneHill in reply to mrsjsmith]

Hi, Prior to speaking to a haematologist I have my blood taken at my GP surgery. Those results are on the screen but not straight away.I have ivig but only have blood taken every 3rd month. It isnt processed straight away but I expect I could ask the phlebotomist to have them done.

During covid consultations were done by phone and stayed that way until recently. I have been complacent as I responded quickly to Ibrutinib and 5 and a half years later am still in remission.

The problem is the haematologists are moved around every few months. They knew my platelets were dropping but not below 100. This month another haematologist rang. I had seen the blood results on the GP screen and she said they didnt worry about 61.

She has sent me a copy of the letter going to my GP. The emphasis was on the fact that in 6 months off ibrutinib I had 4 uti's and stomach upsets. She washed over the cll and said she would ring me in 16 weeks!

It was a different story when I mentioned I had bruises on my legs and was unhappy about my platelets. I was asked if I was on blood thinners when my blood was taken.

This is the first time I have had doubts about a doctor.

A doctor at ivig looked at the bruises. She will see me in 6 weeks at the hospital.

The hospital results arent on the NHS app but they are setting it up soon.

I will speak to the surgery and ask for extra blood tests to monitor more closely.

Its lucky that I noticed the results and I hope it isnt an autoimmuune problem.

Sorry about the long reply. I will ask at ivig about blood tests and results, Anne

[mrsjsmith in reply to AnneHill]

Anne sorry to hear about how low your platelets are. Can you ask at your hospital why as you are sitting for several hours with a canella in your arm that your bloods can’t be tested monthly. Assuming the hospital has a phlebotomy department. It would save you time not having to go to the GP.

Colette

[AnneHill in reply to mrsjsmith]

The GP is close to my house and it doesnt take long to have the blood taken but you are right. I am going to ask for blood forms and have it done at the hospital. The doctors are doing my B12 jab on Tuesday and I have asked for my platelets to be taken. Anne

[AnneHill in reply to mrsjsmith]

Sorry I have answered you with the same info as earlier xx