Welcome to Cancer Chat Napoleon although I'm sorry to hear you've been diagnosed with HCL.
Unfortunately I couldn't find anyone on the forum with HCL at the moment but you may be able to connect with others, and get further support and advice from Leukaemia Care and Lymphoma Action.
We also have a very knowledgeable team of cancer nurses available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m if you have any questions about your diagnosis or treatment.
We're thinking of you Napoleon and wishing you all the best with your chemo.
Hello, hope you don't mind me contacting you. My fairly young (34) has been diagnosed with HCL. I was wondering how treatment went for you and if you have any advice. He's been told he may need 2 weeks treatment separated by 6 weeks as his spleen is enlarged.
In my case I did not have an enlarged spleen at the time of diagnosis and chemo treatment. Therefore I only had 5 days, once per day, of chemo treatment. At point of diagnosis my bone marrow was 60 to 70 percent affected by hairey cells. This was determined from the bone marrow biopsy. The chemo I had was called Cladribine. I was fine with the 5 daily treatments but about 5 days after completion of my treatment I start to get severe bone aching all over and shaking, particularly in the evening. Woke up one morning and was covered head to toe with a rash. Spoke with hematology and they told me to stop taking all the anti viral and organ protection drugs that I was on since chemo had begun. This included the anti sickness tablets that to be fair I did not need to use very often. Heamatology advised me to keep an eye on my temperature and if above 38 degrees to go straight to A&E. In the evening that my rash had appeared my temp went to 39.2 so went to A&E and was put straight on anti biotic IV drip and kept in isolation. I developed drug induced Sepsis and was in hospital for a week on anti biotics and Steroids. My Neutrophil levels were around 0.7 when my chemo started but do not know what they were at when I had Sepsis. I was given White Blood cell growth injections call G-CSF in order to get my white blood cell count above 2.0. As you may know a normal Neutrophil count should be between 2 and 5. When the hospital go me to 2.3 they discharged me home. One month after being home my next blood test showed Neutrophils at 1.3, but think that was to be expected . The following month I was at 2.7 . Last test was 2.1. I am about to have another blood test with view to consultant review on 30th May, so not able to comment yet on how I am getting on.
During the time I had Sepsis in hospital there were two consultant views on why I had got Sepsis. One saying it was reaction to the Chemo the other saying in it was reaction to the anti viral and other organ protection drugs. Personally I think it was not the chemo but the other drugs. During the 5 days chemo treatment and for about 5 days after I felt fairly well so believe that had it been the chemo that caused Sepsis then I would have been ill earlier than I was.
Not sure if any of above helps but by all means get back to me if you want to ask anything further.
Hope like me the Chemo does a good job and that your son recovers well with good remission .
I hope your review went well. Just an update on my son (hoping it might help someone else in the future).
He was quite poorly at diagnosis and had multiple blood and platelet transfusion.
Started cladribine and developed neutropenic fever on Day 3. Admitted for I’ve antibiotics etc. Chemo was suspended. His total WCC had dropped from 14 to 3 in those three days. Chemo restarted. It fell again to 0.3. Neutrophils where undetectable. He was in for two weeks and discharged with total WCC of 0.7 and neutrophils of 0.3. (On the understanding he would stay at home/ be careful). He had already noticed that his spleen had shrunk.
He is still on g-csf drugs but his latest blood tests have Neuts at 1.7 and total WCC at 2.4. Platelets are >100 from baseline of 20.
He feels great as his Haemaglobin is >80 from a baseline of 66.
