Good hearing from you again, even if you're not quite up to a spot of Knees Up Mother Brown just now! Hope you get back on track soonish... hey, i'm about to chicken out of an 18 mile bike ride on Wednesday, discretion being the better part of valour or whatever!
Just back from a good weekend with my daughters down in Nottingham, and several dog walks in the local countryside. Snap-snap-snapping away with the camera on my new mobile rather like a kid with a new toy, at my age too.
Hi I was just diagnosed with HCL last week I am 31 and have 3 young children and find the whole thing very daunting...I am starting chemo within the next month.
I'm sorry to hear your feeling daunted, but its completely normal to feel this way. There are plenty of people in this Hairy club and we'll help all in any way we can.
I hope your consultant has told you how treatable this is and how many of us have long remissions. Many say, if you have to get leukemia, then this is the one to get.
I'm guessing you'll have a week of Cladribine. Probably injections which take 5 mins. You'll get very tired and will have to watch out for infections. I recommend you fill the freezer and get plenty of hand soap. I hope you have family and friends around you too, who can help with the practical matters. I wish you all the best and rest assured, any questions you have, one of us will have our experience on tap to help you. Plus Frank and Yorick will have a barrage of jokes to keep your mood up!
Take care and let us know how we can help and how you get on
You're right, it is daunting, but as Wendy mentions above, and no doubt your consultant told you, out of all the leukaemias to get you have the best one, the most treatable one, and with long average remission times. It's hard to see the positives right now but believe us when we say there are plenty.
The chemo you will get which will most likely be Cladribine is a very mild chemo and whilst it will make you tired and weak, and of course at risk to infections, it is nothing like other forms of aggressive chemo. I didn't lose my hair ( I went thin a bit which is apparently rare), I wasn't nauseous or sick, I just became weak and tired. A small price to pay to kill the old hairies off!
I was diagnosed on December 8th 2011 and 7 months later I am now running 5KM several times a week. The recovery time was surprisingly quick for me which I am really pleased with.
So while it is daunting, it is scary, it is also good news that it's HCL. The others will no doubts be along to share advice, there are some who have had it longer and can give more advice than a newbie to the hairy club like me, but all I can say is be positive,smile and laugh a lot. The jokes from Frank and Yorick will certainly make you smile, though mostly groan at the same time!
Do let us know how you get on and if we can help at all.
Both Wendy and Andy have already said essentially what needs to be said. My pennorth worth is that I was diagnosed Christmas 2009, had Cladrabine January 2010 and although my blood/platelets counts are not good they have remained stable. This means that I have been in remission for about 18 months and I'm 63!
Anyway Lucie, we've all been there, got the t-shirt. Your consultant would probably have told you that everyone responds differently to the chemo - there is no set pattern. You definitely will NOT LOSE YOUR HAIR!!! Some have gone through the treatment with no real problems and others of us have had a hiccup but come through it on the other side.
The main thing you must be very aware of is infections. Another tip which I use to this day is carrying a small bottle Purell with me. I bought a large bottle and decant it so use it on my hands when I'm eating out. Be meticulous with washing fruit and veg especially salads.
Something I think all of us or most of us do is to ask for a print out of your blood results. You may find it useful in time to compare where you are when you start and how you progress as you'll have plenty blood tests done in the coming weeks and months. We like to let others know what our counts are and give encouragement or congratulations as appropriate.
Like Andy, I'm trying to run and keep fit although a very late starter in life to start running - started April this year. So far have done a 10k and a 5k - not as fit as Andy - I wish!!! Mind you I'm due to start training for a half marathon in October and daunted by the thought of it but trying to have mind over matter.
Keep smiling and keep reading the funnies! We're all here to help you get through this. Should you be in the Oxford area let me know and we could meet up.
Yes it is quite a shock when you get a leukaemia diagnosis, and are faced with imminent chemo. I remember it well, even if in my case it was nine years ago, back in 2003, when I was a strapping young chap of... 55. One six week course of cladribine drips - one a week for a few hours - did the trick, and I've been fine ever since, no medication, nothing..... so like others have already said, hairy cell is in many ways THE one to get, if you have to have one.
And medication has changed, there's now the option for a quick subcutaneous injection of cladribine, but different hospitals and consultants may have their own preferred methods, also it's not always cladribine but that seems to be the top choice still.
Whilst you need to be careful during the chemo treatment, try to avoid crowds and people with coughs and sneezes, I'm not sure how crucial that is - the treatment zaps your immune system, but it most likely recovers to a sufficient degree within a few weeks.
I daresay diagnosis has improved in the last 10 years, they seem to be spotting people younger and younger - you at 31 may be in gold medal position, if not then surely silver or bronze!
There's plenty info on the internet, in some ways too much, even for a rare form of leukaemia like hairy cell. And "Leukaemia Care" operate a 24/7 free telephone helpline if you'd like to talk to someone outside your immediate circle of friends and family. Hope you manage your coffee shop ok, I'm fancying a coffee and slice of cake just thinking about it.
Best wishes, and no bad jokes from me... Despite what the others say!
You asked about blood test printouts. My consultant (... there's a misnomer, it's a different one every time I go these days) is usually quite happy to give me a printout, though they often stress the blood test is a spotcheck and results can vary dramatically week-to-week for the same person.
If they're reluctant, it's maybe they don't want you to read too much into the numbers. I used to be a keen trend analyser, but the last 2 years my results have tended to be all over the place, of course when they're good I'm elated and when they're poor I worry....
I think its worth pointing out that Macmillan also have a support line which offers emotional, medical and financial support, its 0808 808 0000. We are, after all, on their website!
Gor 7th Rituximab on Thursday - so only 2 to go. I hope my consultant doesn't thik we need to add anything more. Seeing him tomorrow so will ask. Also waiting results from bone marrow density test, fingers crossed its okay too.
Sorry to hear your of your diagnosis. As you've already heard, Frank and I are the two jokers in the pack. My adage is "laugh at your problems". It's nice to hear later somebody say "when I was feeling sad, you made me laugh." Equally I've advocated for Scottish grannies to work on cancer treatment wards. You could go to them and tell them your health problems and they'd give you a big hug and say "Och dear oh dear. Let's have a nice cup of tea and a big slice of Dundee cake."
I was on a "watch and wait" list for a long time before chemo. I still can't see the logic in waiting for it to get worse before you can have treatment.
When I had my chemo, I noticed that some ladies were wearing cooling caps for their treatment so I asked them if they were having a perm or a set. They appreciated the opportunity to have a laugh.
So look at things with a bit of humour. I asked my doctor for some healing music. The song made me feel better but it didn't really heal me. No wonder. It was by PLACEBO Domingo.
I hope your treatment goes smoothly. With your family's support, you'll sail through. Then in 6 months, you'll join us on the Escape Committee telling other newcomers there's nothing to worry about. When you're well, remember - if you run for three miles every day, by the end of the week - you'll be twenty-one miles away.
Thanks everyone for your support, I am only getting chance to reply now! I have had a hell of a week.. So tired and sick this week. My specialist hasn't really informed me as yet as to what exactally is happening except that I will be starting Chemo! I was just basically told to go away for 3 weeks and get my head round the news and he would discuss it with me on my return. O and do your own research on the Cancer Research Uk website.. Charming!
