New HCL diagnosis - looking for advice re chemo after effects

Hi again  Sapphire_24 and well done navigating to this corner of the Community

As you know I don’t have HCL but I was diagnosed back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I know this journey rather well.

I left your post for a few hours to see if any of the group members would pick up on your post but lets see who are still looking in and using the site.

You can also do a site word search so do put in HCL or Hairy Cell Leukaemia into the Search Tool near the top, hit ‘Anywhere’ and this will bring up the older posts and again you can hit reply to see if the members are still using the site

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

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a person with HCL in it so worth checking.

Always around to help more or just to chat

Hi Sapphire_24, 

I have HCL, was diagnosed August last year and had chemo treatment in September. My neutrophil levels were at 0.7 prior to my chemo.  Was fine after my five days of chemo. Cladribine. Went into drug induced sepsis about 1 week after my chemo had finished and went into A&E when my body temp went to 39.1c.  in hospital for a week on IV drip and Steroids. Then had G-CSF white cell growth injections to get my bone marrow to make good white cells again. They got my neutrophil levels up to 2.3 then discharged me. One month later they were back down to 1.3. in December they were back up to 2.7. My recent test in January shows them at 2.1. consultant had put me on a 4 month recheck to see how I have settled. That's all very much in a nutshell. Please ask if you want any further info or experiences. Regards. Nick. 

Thanks a lot Mike I'll look into the suggestions you've given.

Hi it's Nick not Mike. . You welcome to ask anything further . Kind Regards. Nick. 

Hi Nick thanks very much for responding. Did you have any other side effects from the chemo? Also do you know how common it is to get post treatment sepsis? My husband just came out of hospital last week having been admitted for pneumonia and neutropenic sepsis.. 

Sorry my first response should've been to Mike then my 2nd response to you Nick. 

Obviously I have a different blood cancer but developing Neutropenic Sepsis can indeed happen - I had it twice.

Thanks very much for the info. Just trying to get some idea of what we could be facing so we can be prepared. You've been very kind :-)

No horrible side affects from/during the 5 day chemo. In the few days leading up to my Drug induced sepsis I had all over bone aches and shaking, particularly in the evenings. Felt cold and usually went to bed in the evenings. Woke up one morning covered head to toe in a rash and eventually swelling all over occurred , then temp to 39.1 C before going to be A&E. Not sure how common the sepsis is during the treatment. The two consultants had differing opinions on what caused my sepsis. The chemo or the anti viral and organ protection and anti sickness tablets . Nick. 

Thanks for the info it's very helpful