Hairy Cell Leukemia HCL

Hi again Nick  Napoleon and well done navigating over to this corner of the Community.

As I said in your post in the New to Community I don't have Hairy Cell Leukemia but I was diagnosed back in 1999 with a rare, incurable but treatable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I know this journey rather well.

Being diagnosed with a blood cancer can be ever so challenging but talking with others can help you. There have been a few group members with this type so let's look for them to pick up on your post. You can also use the search tool  near the top of the page and put in Hairy Cell Leukemia or HCL into the tool then hit 'Anywhere' and you will see all the older posts..... and as always you can hit reply and see if the members are still using the group.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

Always around to help more or just to chat

Hi Mike - The Highlander, thanks very much for your introduction and supplied information. Regards. Nick.

Hi Napoleon. I am new to the forum and Have recently been diagnosed with HCL too. 

I have just started my treatment. 

How are you? how is your treatment progressing? 

Hope all is going ok. 

Marta 

Hello Marta,

I had 5 consecutive days of Cladribine Chemo treatment which finished on 16/09/22. After about a week I was just thinking how well it had gone with very little side effects. Suddenly i developed severe bone aching over about 2 days and shaking, particularly in the evenings. This developed into a full body rash. No signs of high temp though. On the 3rd day, late at night i developed a fever and temperature of 39.1 degrees. I was told to stop taking the what I call anti Chemo drugs which I had started when my Chemo started, Ended up in A&E and was put straight onto an antibiotic drip. The rash worsened in hospital and swelling started all over the place, even my ear lobes, throat etc. Eventually I was told I had Sepsis, which I could have done without as my white blood cells were just about wiped out at this point. Stayed in hospital for 6 days on antibiotic and steroid drips. Also they gave me G-CSF growth injections to get my bone marrow to start producing white blood cells. Responded well to this and on discharge from hospital my Neutrophil count was up at 2.3. Although this was artificially high due to G-CSF. The diagnosis was that the Sepsis was drug induced due to the what I call anti Chemo drugs supplementing my Chemo treatment.

Just had bloods tests earlier this week and having consultant review tomorrow, so hopefully will get to know if the Chemo has done its job.

Is your treatment going OK ? Hopefully not the same issues that I had.

Regards

Nick.

I had Clad in December 2021, and just received the all clear from a bone marrow biopsy, I also had a severe rash and spells in hospitals about 2 weeks after the chemo, stick with it, it all gets better in time️

hi I'm new on here just reading your story is similar to my husband who's just been diagnosed with HCL, he's had the 5 consecutive treatment and he felt ok but the last day of treatment he also had blood transfusion and he's felt so ill since. he's on day 8 and he's very tired and drained,loss of appetite but just started to eat a little, he's waking up in night with severe sweating just wet threw, is temperature is ok thou but if it goes to 38 n above he's to go straight up go a n e, he feels absolutely dreadful and says he wish he never went threw with treatment. he suffered with a lot of chest infections over last few yrs and ended up with flu. admitted to hospital and thats how they found out about hcl after is blood count was low he ended up having bone marrow biopsy. I'm hoping he starts to improve, doctor says 6 to 8 wks before he could  get the all clear 

Hi Tra.  

I got diagnosed in September and had treatment in October. I feel ok now, strength is coming back, blood count is improving and slowly going back to normal. 

Hang in there, the first 3-4 weeks have been the longest for me too.
I'd recommend for any doubt have a chat with the specialist consultant. I found that the nurses at the day unit where I go for treatment and blood tests are very knowledgeable  as well, and may have a direct line with the doctors if needed. 

I had night sweats for months, before and after the diagnosis. Doctors told me it's a symptom of the illness. And now that things are improving, they are gone. 

Fatigue is one that stick for a long time, as long as we are anaemic fatigue is with us. There have been weeks when I was panting just climbing the 17 steps at home.... now things are improving. 

From my experience, what I have read here and what the doctors told me, ending up in hospital for some sort of infection is nearly a guaranteed. I got admitted on week 2 and spent 1 week in hospital for an infection. The earliest they catch it, the better, so do go the hospital the moment temperature rises, don't wait.

 There is really no alternative to treatment, so I would not put that on the stand. I know it's not ideal, and not the best months of our lives, but we are lucky enough that treatment is very effective and it's relatively short compared to other cancers.

Hang in there, it will get better. 

Good luck. 

hi thankyou for your feedback,  very positive news and I'm so glad your feeling alot better just showed my husband what you have said about your journey with hcl, its made him feel bit better and he can't wait till he starts to get back to normal,  I'm not sure if you had this sympton my husbands got but is hands are like yellow looking maybe it's threw the chemo, he's on is 2nd wk now after treatment and he's due back at hospital tomorrow just for checkup and probably bloods done again. he's up and down how he feels and one minute he's got bit of energy we're he can get up and walk about and then he's zero energy. and he's hoping he doesn't end up in hospital. x

hi! glad it could help a bit. 
Didn't get yellow hands, but worth asking the nurses / doctors when you go tomorrow. 

I hope your husband doesn't get in hospital, but to be honest I would not get my hopes up too much on that side. Low immune system means even the bacteria which are usually good for our body can turn up developing an infection. It's ok, as long as it's caught early.... 

It helped me to consider it as part of the journey, unfortunately not a very pleasant one. But knowing it could have happened meant I didn't get caught by surprise and managed my anxiety better. 

Take it easy. I spent weeks on the sofa watching TV, but whenever I felt ok  having a short, slow, face-covered walk outside helped my mood more than my body. 

If you struggle with mood and emotions - which is pretty normal I'd say - I found great support from macmillan nurses and specialists. Mental health is as important and body health. 

good luck.