Hi everyone.
I am new to the site and have found some really informative posts.
My husband who is 76 years old was diagnosed with CLL in 2008 and was on WW until August 2016. He also suffers from Parkinson's disease.
He has the TP53 gene mutation, therefore, his treatment options are limited, he was lucky enough to be prescribed Ibrutinib and was on the full dose of 3 tablets a day and everything seemed to be moving in the right direction until the beginning of December.
He caught a cold which led to a cough and unfortunately the coughing caused and small internal bleed. The first we knew of this was the massive bruising that appeared from his groin right across his abdomen and around to the middle of his back on one side. We contacted the nurse that has been assigned to my husband at the clinic he attends at The Churchill Hospital in the UK she told us to come into triage immediately.
He was assessed quickly had a CT scan and full bloods were taken.
The scan showed the small bleed and the bloods showed his platelet levels were really low, 2x10*9 /L all a bit scary as you can imagine.
He was admitted onto the haematology critical care ward where he received platelet transfusions, the platelet transfusions were done frequently over the next 10 days.
The dose of ibrutinib was reduced and eventually stopped altogether.
He had a PET scan and a bone marrow biopsy during the time he was on the ward.
He was placed on IV antibiotics and also given daily injection of Accofil 30MU/0.5ml to boost his neutrophils. The antibiotic changed to tablets after 3 days and he completed the course whilst on the ward.
Just before Christmas he was discharged after having a blood transfusion as well as more platelets. He went back to the ward over the Christmas period for more platelet transfusions. On average his platelet reading was hovering around 10x10*9/L sometimes dipping below and at others rising to around 20x10*9/L.
The report from the PET showed that there were no issues there to worry about but the bone marrow showed the the marrow is full of CLL. Therefore the ibrutinib had not worked at all despite showing signs early in the treatment that it seemed to be doing its job.
He is now at the stage where he has been prescribed a prophylactic antibiotic Co-Trimoxazole and having the Accofil injections every other day.
He has platelets transfusions at the Day treatment unit twice a week and a blood transfusion once a week.
This week we get the results back from a flow cytometry test in the hope that it will give us more understanding of what is happening and keeping our fingers crossed that there is a treatment out there and available to him.
We can not fault the care and compassion from the whole medical team.
Every department we have been to have shown us just how our NHS is working at its best to help us.
As you can imagine we are both worried and do not know what the future holds.
I know this is probably an unusual situation but am wondering if anyone else here has experienced anything similar.
Are there possibilities other than stem cell transplant in Canada for CLL with 11Q deletion?
weekly transfusions going on 4 months
Worried wife
New to Treatment
