I would like to talk to people who are similar to me and my situation

Hi  and welcome to the Online Community, although I am sorry to see you finding us.

I am Mike Thehighlander and I help out in some of our blood cancer forums. We have had a number come through the site over the years with Hairy Cell and you can have a look at their posts by using the sketch tool near the top - just put in Hairy Cell Leukaemia.

As you know - Hairy Cell Leukaemia is on the rare side so may be hard to connect with folks on the same path but can I direct you to this link to our General Leukaemia Forum where you may connect with people who understand the journey you are on.

Follow the link above and join the group by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.

Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post. 

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

I will keep an eye open for you.

I was diagnosed with HCL in May 18 and started Chemo in June. I was put on cladribine, which in itself didnt seem to bad. The following numerous filgrastim did cause aches i can only describe as from the middle of my bones. 
I made sure my house was clean and had no contact with anyone from the outside world, infact became locked in my bedroom to try and stave of any infection as the immune system is dropped to zero.
I checked my temperature daily at regular intervals and at 3 weeks my temp hit 39.5 and i was told by my nurses to just go straight to A&E if i went above 37.5. I spent a few days in isolation with a blood infection. But the Macmillan nurses in the ward i was in were sweet as and made me fell safe. After 5 days i was back home.
A couple of days after that I had a bad allergic reaction and back in hospital. Looked like a bright red Michelin man. Again back within the safety of the Macmillan nurses and was back out in a few days.
Took a good month before my skin would let me outside in the sun and having to cover myself in 50/50 during the heat of last years summer wasnt fun. But it all sorted itself in the end.
I have had several bone marrow biopsies now and after 2 with local im now demanding sedation ;) They say from 99% infection im down to 0.0007% after 1 cycle. Its up to 0.5 after a couple of months so im about to start a second cycle, this time with an anitbody infusion. Looking forward to those 8 hour IVs.
I hope yours goes well. But i will quote my consultant "Its a very curable variant" and i saw on another post someone said "If you could cherry pick a leukemia it would be HCL" and i tend to agree with them both.

I've never really put all of that into one space before and it really does seem worse than I felt it was at the time.
The continuing aches though after my first chemo i see as a small price to pay as it did take my fathers life untreated. So i get to see my family and grandkids and thats worth any pain in the world.

Hi  and welcome to the Online Community, although I am sorry to see you finding us.

A cancer diagnosis can bring a lot of stress, confusion and questions but talking with people who are on the same journey can help a lot. I was diagnosed with a rare NHL over 20 years ago so do understand the journey you are on.

I see that you have found our Leukaemia Forum and we do have a slower CLL, SLL, HCL Forum where you will connect with people who understand the journey you are on. You can ask the folks questions about tests, treatments and what to expect during the months ahead.

It would be worth joining the groups by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.