HCL

Morning 

Noticed you have no replies as yet 

Perhaps some of the members here who are having or have had treatment for HCL could answer any specific questions you may have ?

At least this will 'bump' your first message, G n' J

HCL, or Hairy Cell Leukaemia is not common, but there does exist a charitable foundation that has loads of good information and many contacts.

https://www.hairycellleukemia.org/

These people KNOW about HCL and should be able to assist you with contacts, treatment ideas and research papers.

Good luck

Dick

Hi Santi

You and your son are not alone we are just a rare special group with something not so special in common.

But hey it could be alot worse!!

I have not been on here for a while mainly due to not having alot to say I guess.

I got diagnosed with HCL October 18 (no symtons, incidental finding) I had the Chemo with very little side effects. The bloods recovered over the following 8 months. I had a another lovely Bone Marrow 12 days ago and got the results yesterday.

I was 90-95% affected and now i'm under 5% the consultant was pleased .

I feel absolutley fine just been out for a run in the rain.

I'm told that this last bit may go on its own with my own body finishing them off with no help, or it may grow again and face another round of Chemo.

A questionl- Has anybody else had 5% or under and the body has finished it off with no further treatment?

Santi, If you have any Q's I will be happy to try and help

KR

Happy Mat

Hi Happy Mat

Oh I am so pleased that you under 5% affected and that your experiences of this journey has been smooth. I’m wondering what chemo drug you had. 

My son and I attended a HCL conf at the Royal Marsden Hospital for patients, families and Carers yesterday. It was worth going to. One thing we learnt about was the international register of HCL patients run by the HCL Foundation based in America. 

This foundation carries out research in pursuit of developing knowledge of HCL etc

I can give you links to the Foundation if you want it. 

At the conference we met patients with HCL diagnosed in the 80s and 90s they had been in remission on and off for 30 years. 

Good to hear from you thank you

Santi ever hopeful 

Hi Santi

Thank you for your reply.

The Chemo: It was Cladribrine one injection for 5 days consecutively.

WOW a HCL conference, I did not know that HCL had such an interest.

It feels like the small one in the background being so rare.

I work in the City and would have attended if I would have known.

If you can send over the links that would be great

Remission for 30 years that is great to hear and the age is also very comforting.

Regards

Happy Mat :)

Hi Happy Matt

ive been laid up with flu still not recovered fully hence delay in my response. 
Im not sure how to send you or enclose / attach the info regarding the conf etc 

can you advise thanks 

Forever hopeful Santi 

Hi Santi

Now my apologies for the delay been away for a few days.

Hope you are now over the worst of your flu.

To save making things complicated if you could send the name of the organisers, I can then do a search on Google to find the details I need.

Many thanks

Mat

Hi Mat

Hope the info below helpful it’s basically info re registering for the course which has taken place already  Good luck

To attend you must register and receive confirmation. Places are limited so please register early. For more information and to register, please get in touch:
Online: cancerbrc.org/hairy-cell-event
Telephone: Lisa on 020 3186 5408 or Suzan on 020 3186 5409 Email: cancerBRC@rmh.nhs.uk

Santi 

Hi Santi

Thank you so much for the details, i have registered for updates and Webinar later this month

Hope all is going well with your son.

KR

Mat

Dear , and everyone else who's replied to this discussion. My brother was diagnosed with HCL about a month ago, he's had a week of chemo (cladribine), and unfortunately developed neutropenic sepsis, and is just starting his third week in hospital. He's been allergic to many of the antibiotics (he developed the horrendous 'Red Man Syndrome'  a head-to-toe rash probably in response to Vancomycin), and has had hallucinations, paranoia, terrible fever and vomiting. He's finishing his course of the only antibiotic he's not had an allergy to tonight, so tomorrow morning is going to be crucial. Thank you so much for the links to the stuff at the Royal Marsden, that's so helpful. I've been spending every minute I can at his bedside, and I'm so exhausted. 

Kindest wishes

Debbi