UK CLL Forum, UKCLLFORUM

Patient Profile for: Rob



General
Mutational Status
Positive Prognostic Markers
Neutral Prognostic
Markers
Negative Prognostic
Markers
Chromosomes
Clinical Presentation
Drug Allergies

DOB:
Male

       

 


 


General

I write about my husband who is the patient. Diagnosed aged 49.

In 2001 Rob had a swollen gland in his neck which after a few weeks he decided he had better get checked, suspecting glandular fever because he was also having night sweats. Our GP referred him to hospital the same day. The next day he was recalled and more tests done. It was a matter of days to the diagnosis of CLL. White blood count of 77 at this time. 6 months treatment commenced with Fludarabine in tablet form (one week on four weeks off) which reduced white count to 11, then 7 where it stayed for ages. Remarkably good tolerance to treatments some nausea and no hair loss. Rob remained well but blood counts started to creep back up and more swellings appeared. I can't remember exact time scales now but he had another round of treatments with Fludarabine which didn't have as good results as the first time. He had further treatment with both Chlorambucil and Campath to clean up his blood to best possible results and stem cells harvested and frozen in readiness for transplant. He had usual side effects to these treatments, nausea, hair loss but quite violent shaking sessions with Campath also. He remained well again for some months. When he started to get increased swellings around his neck, behind his neck and under his arms. These reached tennis ball to grapefruit sized proportions. Spleen not badly affected at all and blood not remarkably bad either. However, the time came and he was booked for a stem cell transplant which he had June 2004. No way round it but to be honest - the treatment is harsh. He had 7 weeks in isolation (should have been 4) but he didn't pick up well. He could not eat. Eventually came home emaciated and being fed by gastro nasal tube. About two weeks after being home he collapsed, dehydrated and weak.  He had a few more days in hospital and his platelet counts were very low. He continued to feel unable to eat for a total of 5 months. In October time he had so much pain in his stomach he again ended up in hospital with a bleeding ulcer. Whilst he was in there he developed chicken pox and it transpired that he had disseminated shingles internally rather than an ulcer. He was very poorly and on aciclovir and other antibiotics by drip. To be fair I think he was just unlucky at this time - he technically should have been recovered from the transplant now.

Took about three weeks to recover sufficiently to come home but then started to recover from the transplant properly. He ate the week before Christmas and his first "proper meal" was Christmas dinner!

He has had shingles once more about 18 months later but has otherwise remained totally well. 6 months ago one swelling returned under his arm and in the last few weeks a few in his neck too. Went to the hospital today...well he will be back on treatment in the next few months and possible another BMT if a match can be found.