Welcome to the HCL club Lucie! You've had all the advice about staying away from people, salads etc. We've all been there in various degrees of suffering or not as the case may be - the side effects. Also, you've been given the assurance that if you have to have leukaemia then HCL is the one to have.
Thanks was it Sailor Dave? for the tip about using shift and enter to create the paras. I was also having difficulty and the MacM techies couldn't work out what the problem was so I switched to Google Chrome only for this purpose. However, our very own HCL techies have come to the rescue!!
I say - this HCL "club" aint half good!! What with techies, comedians, funnies, athletes including sailors and whatever other gifts we have we're doing pretty good I'd say! President Frank also doing so well with his house chores and cycling! Prehaps we should start our own HCL Olympics!!! Gold medals all round eh?!
I've at last started back on the training trail in the hope I'll be fit for the half marathon mid October. My knee is still playing up but manageable - ignore it while training as the pain seems to come and go while training - very strange!
Well it's good to know that some of you are making good progress and others just plodding along like me. Lucie - here's to you and hope the side effects don't hit too hard - keep your chin up and keep smiling. We're all here to support each other so keep in touch.
Love and healing hugs to you all. If you're in the UK which I presume most of you are - then enjoy the hot weather - a bit sticky today but let's not complain - winter in a couple months!
Its all gone a bit Pete Tong. I was in A&E for 3 hours yesterday and 5 hours on the chemo unit on Friday and I'm a bit miffed. Thought it was all done with. This isn't fair.
I was feeling a bit rough at the start of the week, spent Thursday in bed with a blinding headache, nausea and felt proper sorry for myself. On Friday the doc on the unit thought it was a virus and gave me antibiotics and anti sickness. Overnight the rashes and swelling started up and I'd only had 1 tablet. My nets are blooming amazing - 6.3!!!! Why has this happened again? I thought was generally unlicky health wise, but now I feel really badly done to. A&E had no clue what to do - I don't blame them, after 6 years no one else does either.
Sorry I'm whinging but it very frustrating as I thought it was over. Anyone else had problems after Rituximab? If so, what and how long for?
I'm concerned Lucie might get concerned - I can assure you Lucie not everyone gets it like me. I am just very unlucky and feeliong sorry for myslef.
My hands are really hurting so going now, but needed to complain and I cannot do this at home or they swarm around me and I feel swamped.
Sorry to hear of your problems Wendy but in a strange way, you've cheered me up. I've been feeling depressed with my health problems. The pain in my coccyx has stopped me from sleeping properly as has my blocked nose and lung irritations.
I didn't want to be a party-pooper when everyone else was doing well. For the benefit of Lucie. I'll reiterate that my HCL is down to 5% but I have a foot rash, gastritis, arthritis and nasal problems. ENT man says no nasal infection. Gastro man gave me antacid and referred me back to GP. GP is sending me for physio for coccyx and shoulder pains and a moisturiser for foot rash which will "probably never go away."
My theory is I have Candida which can become serious when your antibodies are low. These 4 compaints are all symptoms of this. (Problems started 4 months after chemo). Been taking Syntol off the Internet. Very expensive but supposed to kill Candida. This fungal infection feeds on sugar. When it doesn't sense any sugar, it armorises itself against attack. Syntol seemed to be working but as soon as I started eating potatoes and chocolate again, the stomach and back pains got worse. So I reverted to Bicarb. Pains reduced. (This also kills Candida) I think the arthritis is actually bursitis where the shock absorbers in your joints become enflamed by infection or a change in the fluid content. But the NHS doesn't recognise Candida as a problem even though one oncologist believes it causes cancer.
If I win the Lottery, I'll pay for some research Cancer Research can't fund tests re Candida because the WHO won't confirm that it's a cancer-related problem. They won't do this because no research has been done because they won't say it's a problem because no research has been done...AAAAAAAAAAAAAAAAAAAGH!
Incidentally, has anybody ever had a medical test to find out what's wrong as opposed to confirning what the doctor has diagnose?. (Another theory of mine.)
Anyway my current self treatment is to eat starchy foods, wait an hour or two then wham in half a pint of bicarb before the Candida knows what's happening! The epitaph on my gravestone will read "I told you I had ruddy Candida!"
Afternoon Guys! You are all doing so well and made me have a positive out look on the treatment for HCL Howver,
Went to hospital to get my first chemo sesssion this morning ... but after waiting an hour and half whilst they searched for my notes to be then given the chat about the chemo.... followed by several attempts of inserting needles to then be told that my drug wasn't in the pharmacy and they had rang round the other hospitals to try and get some but only had enough for 2 days.. therefore see you later Lucy and come back next monday!!!! I can not belive this has happened.... Just come off the phone to the doctors secetary who didn't know anything about it as the doctor is on hoildays when she rang me back she said, she wasn't going to lie to me that they couldn't find my notes as there was a piece of paper sitting ontop of them and the pharmacy had just forgotten to order up the drugs... Doesn't give me much faith in the system at all.
I wouldn't be so cross only its all the arrangements that had to be made for this week for the kids, my husband my business etc not to mention having to deal with it all mentally.
This is shocking and I am so annoyed for you. I know cladribine is on the more expensive side compared to other chemos and so some pharmacies do not stock it until needed. Plus it does have a limited shelf life. To put this in perspective, some breast cancer chemos cost around £3 for dose and Cladribine is circa £600 a dose, and Pentostatin is around £900 a dose.
This is no excuse. Assuming you are under the hematology team. I would hazard a guess there will be more than one consultant in the team. I would be tempted after your earlier experiences for you to consider an alternative consultant. Whilst I am not impressed with your consultant, I would however like to reassure you that your faith in the 'system' should be strong - the NHS have proven marvellous for me and if you extend the 'system' the number of treatment options we have with HCL is fantastic considering its relatively rare.
My advice if, if your faith in your consultant is rocked, and you have a good relationship with your GP - I would get an appointment with your GP explain the run of poor experiences and ask about options for referals to another consultant? We do have a choice of who treats us and where we get this treatment.
I don't know where you are from, but if you're comfortable sharing your location (even county) the many folk on here could direct you a consultant they have who is HCL experienced and is known to be efficient and have a good bedside manner).
Alternatively I would share your concerns, in the most polite and calm way, explaining what you would like to have happened to yor consultant when they return from holiday. At the leats they should apologise and buck up their ideas!
Wendy: Sorry to hear you've had a setback, just when it was all looking so good.... and no, you're not a whiner.... hang on in there and you'll soon be a winner......
Chris: Gee, keep taking the bicarb? Hope the shops don't run out of baking powder..... talking of which, I better type this fast as I've poured a coffee and got my last slice of choc cake awaiting me in the kitchen! Staying with the whimsical note... you ever been on candida camera? Hope things get sorted for you soon.
Lucie: Oh heck, what a mess-up, there's no excuse for not ordering your chemo, like Wendy (I think) said, cladribine is costly and also has to be made yup freshly, it doesn't keep more than a day I think, not that that will make you feel any better, so annoying as you've the business to sort out, I hope your NHS experiences improve - and these days, there's no excuse for docs being abrupt and unhelpful.
Florence: Hope the stiff training regime is working out ok, don't go wearing your knees out now! Gotta go, for my coffee and choc cake!
this week has not been great! after my ordeal on Monday I have been unwell since. Although goods new doc' has given the go ahead for chemo monday just had bloods done to confirm so waiting on a call back from hospital, I have been house bound since yesterday as neuts were 1.1 on tues! Iam new to all this so is that normal??
Also bit confused... I was under the illusion that I was going to have one 5 day session of treatment but my community nurse tells me today that this isn't likely. she said it's more likely to be several sessions of 5 days.. I am waiting on hospital ringing me about that too! She said going by my bloods over the last while to expect blood and platlet transfusions too.
I was thinking I would be back to my old self in about 3 months is it me that is in fairy tale land???
Can anyone else guide me as to what kind of cycle etc they had.. trying to make big decisions regarding my coffee shp etc!!
There's a first for you... first member of this group from Northern Ireland, I think. If it's any consolation, last time I had my bloods checked in may, neutrophiles had dropped to 1.3 and platelets to 102, but they didn't want to see me again till September.
I believe neuts normal range is between 2 and 6, and ideally they account for two-thirds of your total white blood count, so neuts of 4 and WBC of 6 would be absolutely marvellous.
My understanding is that there is usually no panic with HCL, as it develops slowly, in my case they waited 3 months to start chemo, partly so I could go on holiday and also for my daughter's wedding. That was back in 2003.
If its cladribine you're having, there are various ways - from a daily drip for 5 days, a few hours each day, to once a week for six weeks (which is what I had) to a continuous 24 hr drip. Different docs have their own preference. There is also a newer sub-cutaneous injection method, over in a flash, literally - one jab each day for a week, often self-administered at home.
Things to look out for are raised temperature or fever, which may need hospitalisation, or at least treatment with powerful antibiotics like septrin.
Transfusions are not usually required with HCL.
If all goes well, once the docs sort themselves out, you should be fighting fit and back to normal within 3 months, so you're not in fairy tale land at all thinking that.
It's worth asking your docs how many patients they've treated with HCL this year...... don't be surprised if the answer is one or two, if that, which does of course raise the question, do they really know what is best for you? I was treated in Wigan by a marvellous lady consultant, she also sent me to Liverpool to see a world expert in HCL to confirm her diagnosis and agree what treatment protocol was best - and nine years later, here I am, not been on any medication since way back during and just after chemo, so it all worked out. And you should be the same.
Thanks for coming back to me so quickly! My consultant said he see's one or two with HCL a year and he said he had never seen anyone as young as me! My said it was necessary to start treament as I have alot of symptoms! He said he would except to give me a platlet tranfussion!
It's the not knowing that I can't stand I am an extremely organised person and with the coffee shop i need to be.
I am going for 5 days in a row... Will that be all do you think? (usually i mean lol)
It's good that's your consultant has seen a few patients with HCL before, not everyone has. I imagine one full course, over a week or whatever, should do the trick.
Heck, I may end up having a platelet transfusion myself, if mine keep falling. I think it gets serious if they fall below 70.
Have a good weekend Lucie, and best wishes for the chemo. Keep us posted with your news.
