Blimey thats a conicidence and a small world! ....lucky you, do let us know how you get on with Prof Cawley. He treated Frank from Lancs on the once a week for 6 weeks regime, (or it could have been 7 I can't quite recall now) although he didn't invent the weekly system, I think he was one of the first to try it. I think it has now been proved though that it really doesn't make much difference to the outcome. It would be interesting to know what he is researching into exactly at the moment and what he thinks the future holds....they must crack this one day!
Pleased to hear you are a fair weather rider.....blimey a sensible man!....few and far between!
See ya!
Nicky.
I am gob smacked - where have you all come from? I'm not sure I can express properly what this feels like. I've felt so alone for so long. Then you all appear. You've been there too. My jaw is literally hanging open. I feel relief that there are other people out there - who are getting on with HCL. To hear so many long remission periods is re-assuring too. I guess 'rare' does not have to mean 'alone'.
Nicky - I owe you a special thank you. You have been so kind to bring people to me. You must know how important this is to me. Thank you seems inadequate
Nicky you are right - I need to know more about what happened last time. I was just in a hurry to get away. The thing is my consultant has retired and I will meet my new one for the first time in December. I hope they can look back. I understood the chnage to Pentostatin was cos they thought my reaction could have been to the cladribine. I had the Cladribine, intravenously, weekly for about 3 weeks. then one week subcut. Then I was hospitalised, after the 3 months in hospital they restarted treatment with a 'Groshong' line (not sure of spelling) cos my viens just went AWOL. I think knowing more will prepare me - I will ask. I last had a blood count in May - too embarassed to ask GP for another test before December. I have been feeling awfly tired recently and bruising a bit. However I think I have been down. I know I should not be embassed but I am! You seem so 'in charge' of your HCL. I have not been - but I am going to get in charge. I remember being told there were still cells present in my last bone marrow test - but 'at a level not to worry about'. I think the fact is - any level worries me. I need to ask what that level was. So when another test comes around I have a benchmark.
Some good news! I have found the courage to leave my job and I have got the job I went for. Thanks for helping me build my confidence. Handing in my notice tomorrow - arghh. Wish me luck!
Need to read all the messages again - still stunned!
Thanks everyone
Wendy x
...of your posting on the forum wish you strength and love; my husband's cancer, myeloma, isn't all that rare unfortunately, but most people still haven't heard of it and it is really hard to have to explain each time. And it's 'hidden' like yours - most of us don't have to think about what is going on inside our bodies and don't want to, but it's something that cancer does in a very sneaky way.
Anyway, even though I hadn't replied until now because I couldn't give you any information, I'm so glad you are feeling stronger and less alone - that is good news in itself!
So please remember that all those many readers will be wishing you well even if they don't always reply. Took me ages of lurking before I ever got up the courage.
Hah! I was hoping you'd have a nice surprise when you came on here next, the number of replies has rocketed from the very sad 6 when I first joined! Mind you it will take you half an hour to plough though all of the above...think I've had a case of verbal dioreaha (can never spell that!!) . I still think you went through a nightmare time, but that doesn't mean it will be the same next time at all. The very fact that you are on 6 monthly checks is GOOD, this means they they think your counts are fine, you would be in getting your counts a lot more frequently if your counts were poor.
But actually if you are feeling vulnerable ...then it may help to monitor your counts so that you can actually see they are fine - doesn't work for everyone as Roberta said above ..she was obsessing over her counts. Me, I like to seee 'em in black and white! Equally I wouldn't hesitate in getting a blood test if I'm not feeling right...just ring the surgery say you are not feeling right and would like a blood test....simple as that....I would see the nurse at the surgery then having spoken to doc.
Otherwise you'll do your head in worrying if you are OK or not! I am feeling awfully tired at the moment too...its a right pain isn't it...I can always drag myself out to the pub at the weekend though!
It is scarey to think there are still hairy cells lurking but they take so long to take over and force treatment ...you can still carry on in the meantime...try not to think about the hairy buggers!!! Or think of them as hairy buggers - make fun of them, and don't think of them as cancerous cells. You can live with these hairy buggers! Hust think if we can go as long as Roberta's 10 years...you will have spend that 10 years worrying unessarily.
Have you had your flu jab yet???? Got mine next week.
Don't forget to ask your new consultant if he/she has treated ANY cases of HCL before.....if they haven't , ask to be referred to someone who has. Also when you ask for the details of what happened, having a new consultant will be a lot easier and less emotional than if you were discussing it with the old consultant, it will be like the new one reading you a report. Take a notepad with you with ready prepared questions ...will make you look very efficient!!! And, will be a good start with the new consultant! I'm SO BOSSY!!!!!!! Hope this is coming across right and doesn't sound like I am dictating what you should do argh!!!!
Hey!!! What a result with the job...you must be chuffed to bits...what will you be doing?
By the way, did you take a tablet called septra or septrin before going in for treatment, I had it and it was taken about twice a week for a few weeks before going in ....my memory is bad now, I think it was to prevent getting pneumonia? I have noticed on Rob's site that a growing number of people have experienced problems and docs are putting it down to this drug not 2cda, my doc thought the same...might be worth a mention if you took it?
Well I've managed to blab on for ages again, ooops! Have you niticed that when you are doing an email in comment box, it is only very short and then when you press POST - up it pops and it is absolutley miles long argh!!!
Go Wendy Go!!!!
Take care
Nickyxx
Actually i think our cancer (HCL) is a form of cll not hodgkins Wendy. That was what i was told anyway when i was diagnosed.Oh yes and if you was going shopping for cancer this is the cream of all cancers the very best one to own. Now doesn't that make you feel special. This is what my Onc told me he he but i only heard the cancer bit and not the rest. So as you can see not as rare as you thought huh!
Well done on your new job hope it works out really good, oh who are we fooling your going to rock the joint. Go get em girl!!
....Bobby....
Hello, have just spent ages reading thru all the hairy posts - Nicky told me about this site, and Hey,Bobby!! wondered where you'd gone... nice to see you're still cracking those old piano jokes, my fave is still the Morecambe and Wise "I'm playing all the right notes, but not necessarily in the right order" directed at Andre Previn I think.
Fascinating how everyone's HCL story can be so different - some sail thru the treatment (like lucky old me), others get complications that can be very drastic. The big thing that helped me was the realisation that HCL is a chronic -slowly-developing leukaemia, and if you gotta pick one, pick HCL.
I've just hit the magic five years remission - looking back, it hasn't stopped me doing anything, although I did retire from work a couple of years ago when I was offered a decent deal, and I never wanted to work till or beyond sixty anyway.
Frank dear boy how the bloody hell are you. The reason HCL was so easy for you mate was your taste in long walks in the English countryside. You simply got it lost and it never has found you again. I think you have stumbled on to a wonderful cure for our cancer he he well done on the five years remission I have got another year and a half to catch up on you yet but i will get there.
How have you been keeping? My daughters wedding went off a treat. Great speech By Daddy felt sorry for everyone i blabbed for ages he he
keep well
....Bobby....l
Hi Boys,
Hey....3 female and 3 male HCLers on here now...wonder what we will get next? Thought this HCL was supposed to be a man thing, no....don't answer that!
Have good weekends all, I'm off down the pub now....nice glass of Pinot Grigio waiting for me!
Nicky
Just got back from the hospital after 13th shot of pentostatin, feel a little groggy but feel better after reading the posts. I only have 2 to go so the end (of the treatment is in sight). I forgot to ask for my counts, I do not get hung up on counts when i feel fine (and i feel great )as i think they must be ok or i would feel ill and a rouge count can make you imagine things that simply are not there.
Me, Angie and the kids are off to Centre Parks (Nottingham) on Monday for a week and we can't wait.
I will let you allknow how we get on when we return.
