Have been diagnosed with HCL

Hi again Ben62 and in a good way it’s good that you have now got some clear answers. 

Lets see if any of the group members pick up on your post and have any experience that relates to your post. 

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 Group.

Thank you Mike , as always.

Hello Ben62

ive recently joined the HCL club. I wonder how you are?

kind regards

Hi Sunni

As you may know some with HCL go on watch and wait as the condition is slow growing and some such as myself get the treatment if the blood cells drop to a certain level ( in my case the platelets dropped below 100) so I did 5 day consecutive Cladribine injection in the tummy by the end of October ,Then after 10 days i end up having Neutropenic fever and rash all over the body( the rash itself probably the reaction to my preventetive antibiotic , co-trimoxazole ). I was admitted into hospital for one week in November. they tried different antibiotics to control the fever and succeded at the end.( so get a thermometer handy to check  your tempreture during and following the treatment( if  they plan to do so in the future). i have been very careful for last 3 months not to catch any virus or infection by wearing face mask and limiting contacts with others as the immune system is a bit weaker during this time  .Now  my bloodworks  is getting better apart from a  lower platelets(126).

I dont know at what stage are you , but the treatment is depends on your blood cells level.

Try to be positive and you will be ok at the end. wish you all the best.

Thank you for the contact Ben62

I'm waiting for my treatment plan. I’ve been told it’ll be a week of cladribine by injection.  It sounds like you had a tough time, but it’s useful to know the reality.  My counts are all low at the moment, so I’m already shielding and feeling quite tired and lethargic.

I send lots of healing vibes to you, I know the prognosis is good.  The uncertainty of treatment is my immediate concern.

 Treatment with Cladribine is considered less harsh  on the body compare with other types of chemotherapy . take extra care for infection especially the first couple of months after treatment . The bloodcounts will drop first few weeks , then start to picking up gradually. As the treatment strats try to drink 2 to 3 littres of water every day for at least few months ( as dead cancer cells are filtered through the kidneys and a good hydration helps the kidneys not to be clogged up by dead cancer cells and losing the function). follow the neutropenic diet( only cooked food ,no salad and so on)until your blood counts normalised .All the best

Thank you Ben62, I’ll look into a neutropenic diet.