Valentinex2's blog

Day 5 of lenalidamide!

2010-02-27T08:32:14Z

Well - I am still here - only side effect I have so far is a little bit of itching on my forhead and scalp - guess I can cope with that. I also have to take Allipurinol - which I thought was odd as hubby gets that for his gout but apparently dead cancer cells turn into protein which then turns into uric acid - so it is to stop that from building up. Sure as heck don't want gout on top of everything else.

Energy levels seem to be okay as is appetite. Another bone marrow asp on 23rd March whiich will see how the leukaemia cells are responding. If good response will probably start chemo next month - what a thought.

In the words of Mark Twain - I check the obituaries every day and if my name isn't there - carry on as usual!

Took the pill last night - still here today

2010-02-24T14:55:13Z

Well - still alive today - Don't know what I thought was going to happen. Feel okay today but last night after I took the first lenalidamide I was very apprehensive. Anyway - got to sleep okay and was very relieved to waken up this morning. Went to hospital for weekly platelet input. It is a horrible day here in Scotland - wet - sleet blowing through and very dark and dismal. Bought a short pretty wig today in anticipation of losing my hair. So now I have two wigs and loads of scarves etc., Bring it on!- - I am ready!

Start the pills today

2010-02-23T08:52:14Z

Well it is the day of reckoning today and I take my first lenalidamide tablet tonight. Dreading it but it has to be done. Sitting in my apartment looking out at the sea and wondering if I will still be here tomorrow - talk about dramatic, I know! If this is what I am like about taking the tablets what will I be like when the real chemo starts? Must get a grip and pretend it is an adventure!

Hopefully will post tomorrow and let you know that I survived the first 'killer pill'.

Journey towards BMT

2010-02-19T08:12:15Z

Hi all

Was back at the Western Gerneral in Edinburgh on Tuesday and I have 'the pills' I am not starting them until next Tuesday as husband is night shift this week and was worried in case I took a bad reaction and he was not here to take me to hospital. I have looked at them and they look harmless - just small white capsules - hard to imagine the poison that is inside this little capsule. I have a vision of myself taking one and ending up like one of Agatha Christie's victims - grabbing my throat - then next thing legs up in the air etc.,

Hopefully this will not be the case. Going to try to do lots this weekend as it may be the last time I feel normal for some time. Have ordered a nice short wig as well as the one I got on prescription and have lots of pretty headwear lined up too! About as prepared as I can be for the onslaught of drugs - chemo - then bone marrow transplant - wish it was next year at this time - I will either be okay or up playing my harp in the clouds. Will let you know how the pills go next week.

Monday again!

2010-02-15T10:15:51Z

Hi all

Well I have spent the weekend reading all I can about bone marrow transplants - partcularly as I will need an unrelated donor due to non existence of siblings. Wish I hadn't bothered - it sounds as much fun as having my eyes burnt out with red hot needles.

Also been practising for hair loss - trying on wig - still think it looks like a wig and also trying different ways to tie scarves and bought a few from a company on line. What is is the saying - fail to plan then plan to fail! Hospital tomorrow - and probably starting the new pills - the chemo will follow in a few weeks - can't wait ------ not!

Trying to think of plus points - won't need to shave my legs - also had eyebrows tatooed so will still have eyebrows. Lots and lots of time to read - if I am up for it and a chance to be skinny - never achieved that yet.

Mmmm can't seem to think of any more - Got any suggestions?

The New Journey

2010-02-14T09:46:11Z

Hi again!

Well had two days at the Western General Hospital in Edinburgh. Got a bone marrow asp - which was more painful thatn the one I had last June when I was diagnosed. Also took loads of blood from me and ECG and echo cardiogram. I see the consultant again on Tuesday when - if he has happy with results I will be starting my new trial drug lenalidamide.

I have lots of mixed thoughts- whether I am right to accept treatment as I had decided before not to. However I am going for it - the worst scenario being - curtains for me - which is what the leukaemia would do to me anyway. Today I feel very calm and tranquil but of course that changes - tomorrow I may be a gibbering wrech - one day at a time eh?

Wil post again soon to let you know how I am getting on with 'killer pills'.

Today was platelets day!

2010-02-09T15:25:26Z

Hi all

Today I had to go for my usual weekly visit for platelets - normally this is a Wednesday but I am going to Western General in Edinburgh tomorrow as I am starting a trial. I now have to get 'washed plateletes' as just before New Year I took a reaction to ordinary platelets - in that I felt my ears start to tingle and was itchy all over - within seconds my ears had swollen up (I looked like Dumbo) and I had this horrible itchy rash all over - I could also feel my face and lips start to swell up. They immediately switched the infusion off and I had three doctors standing over me (just like Holby I thought}. After some hydrocortisone and piriton thimgs started to settle down although my ears took until tea time to go back to normal!

Two of the regulars at the day unit - I noticed seemed very poorly compared to how they had been recently - which made me realise that I could also quickly start to go down - wee bit scary. Anyway came home and went for a walk along the promendade which was very uplifting and tomorrow I go and see the specialist to prepare for this new treatment I am about to start. This involves another bone marrow aspiration (such fun) and loads of blood - ECG and echocardiogram - can't wait.

It was funny when this morning I received the phone call from the hospital to tell me platelets had arrived - last year at this time it was phone calls to tell me about shoes or handbags that had arrived or an appointment confirmed at the hairdresser or beauty parlour - My God how things change eh?

New Journey

2010-02-08T08:21:05Z

Hello All

I have not done any blogs for months although I log in every day to see how you all are. A quick recap for those of you who don't know me. Diagnosed last June with acute myleoid leukaemia - right out of the blue - no previous symptoms but felt faint one morning when out cycling. I have the strange chromosome 5 problem which meant that chemo was only going to give me a very very slim chance so I decided not to take it. Was given about 8 weeks to live but am still here 8 months later, Only treatment has been blood and platelet transfusions and I have really been pretty well.

However I now have the chance to take a new treatment lenalidamide which is apparently effective in getting rid of this chromosome. If that works - onto chemo (yuch) and if that works onto to stem cell replacement (no picnic either I know). So journey starts this week at the Western General in Edinburgh for screening - bone marrow asp - bloods ecg etc., Have to go Wed and Thurs for this. If I am fit enough then onto the new trial drug.

A bit scary as I am so well at the moment and I will basically make myself very ill with chemo but the haematologist at the Western did spell it out to me that I have been very fortunate in being so well for so long but that it cannot continue and can only get worse progressively or roar up into full blown AML.

Will try to post fairly regularly. Thanks to Teri and Alan Gerrard for the help they have given me so far through PMs. Wish me luck guys?

Living under the shadow of the axe!

2009-08-12T16:56:28Z

Hi All Well so far I have been very positive since being diagnosed with AML (chemo not suitable) but although today I have been to hosp and all is stable I have decided that the worst thing is the strain of perpetually feeling like I am living in the shadow of the axe! I feel well but my mind is starting to play tricks on me - every little niggle and I worry - is this it? It is constantly there marring my quality of life all the time. I find myself starting to think - oh well if it's inevitable - then might as well be sooner rather than later! This is the first time I have felt as bad as this - does anyone out there know what I mean by feeling this way?

Lazy day due to Luke!

2009-07-30T11:43:49Z

Morning all! I am due to go for blood top up tomorrow - so haemoglobin is about as low as it is allowed to get! Had a good night's sleep apart from the cat wakening me at 4.30am yowling in my ear - don't know what was wrong with her. Got back to sleep okay and had a fairly long lie in until 10 and fnished my library book. Got up and went in the shower but started to feel faint - this was how I presented at the hospital in the first place only to discover I have AML. I managed to get my hair washed etc but had to sit down to do the drying process. Looks as if Luke escaped from the trunk - have decided he can hang out quietly with me today but will be banned again tomorrow after I have my dracula fill up. Having to sit down to dry myself made me feel like an old lady and I supposeI felt a bit sorry for myself however I will feel better tomorrow and it is a very good excuse for an extremely lazy day. I suppose it's all about accepting your limitations and learning to enjoy doing things that you never had the time for before. Sorry to hear about your hassle Debs - that's enough to put blood pressure through the roof! Bye for now all - hope you're all doing the best you can! Christine

Luke has been shut in trunk today!

2009-07-29T13:53:15Z

Today I have been at the hosp getting levels checked and my consultant is pleased at my stability -esp with white cell count and my length of time on this earth may well be a fair bit longer than we at first thought! That's the first bit of good news I've had since I was diagnosed 6 weeks ago. Maybe I had better stop spending so much money! However will still continue to play on it with regards to household chores - husband is turning into Cinderella - today he is cleaning all the brasses and washing the windows - I was reading my magazine and saying how sorry I was that I was not well enough to help!! As far as Luke is concerned I have battered him with the sweeping brush and shut him in the trunk - he can get stuffed today.

Weekend survived with eleven platelets!

2009-07-27T09:55:05Z

Morning all - well me and my eleven platelets have survived another weekend. Had a good day in Edinburgh out for lunch with my two sons ( One is 31 and the other is 36 - I am only 57 but I started young - looks like I will finish the same way so maybe it's just as well! ) Also that's husband's night shift stint finished for a while - no longer have to worry about him coming in to find corpse as corpse will be lying beside him should I depart suddenly through the night. As some of you may have read I have called my illness Luke (AML) - last night before dropping off to sleep I was battering him with my medication that I was prescribed from my homeopathic specialist - sort of visualising a ten pin bowling scenario where the pins are leukaemia cells and my big white pills the bowling balls that knock them flat. I was also trying to get my platelets up by pretending some busy little beavers were trying build dams and multiplying my eleven platelets ten at a time! Yes I am probably a little on the eccentric side. Anyway feel as if I have done something positive. Hope you are all having a good day - the sun is shining here (Kirkcaldy) and I am looking out at the sea and glad that I feel well today and hopefully will have a super day. Tomorrow is tomorrow - I just live in day-tight compartments now - yesterday doesn't get in and neither does tomorrow -takes away all the fear. Love to all Christine xxx

Me and 11 platelets - out for a drink!

2009-07-25T20:55:22Z

Hi All again As some of you know I have AML and actually feel extremely well - I have been reading some of your blogs where you are worrying about platelets crashing to 200. Well - when I went for bloods last Wed my platelets were sitting at 11! I am going next Fri for blood transfusion which will probably put them up slightly. What I can't understand is how I am still alive - perhaps I am an alien? I went out tonight for a drink with friends and kept thinking - My God - my platelets are sitting at 11 - I could haemorrhage to death at any time!! Anyway I am home, still alive and writing this - what a funny old world this is. A few weeks ago I never gave platelets a thought - now it seems they are my obsession. Oh well - guess I will just have to hang as I grow!!!

Living with my unwelcome guest!

2009-07-24T14:15:25Z

As already I stated I was only diagnosed with AML a few weeks ago - fortunately my family although shattered are all grown up - must be so hard for those of you who are seriously ill and have young children to care for. Anyway I have decided to look on my illness as an unwelcome guest and call him Luke - I didn't want Luke here at all - but now I have to learn to live with him. The thing he hates most is me being happy and cheerful - so I am determined to be that as much as is possible. He loves it when I get down because he gets his feet firmly planted then. Today I have ignored him completely - I went shopping and bought some new clothes and a pair of shoes - I then met up with a friend for coffee and a smashing muffin - then went off to visit another friend are we have arranged to go to a chalet in Campbelltown for the weekend at the beginning of August - Luke is not getting to come - he can stay at home and no doubt will try to lay traps for me. I find the time he scares me the most is in the evening between 7 and 9 - before I go to bed so have made mental note to build some defences for that time. Not so bad when I go to bed cos then I am busy visualising platelets - haemoglobin and white cell count going up. When I went on Wed for bloods platelets were pretty low - Luke's fault of course so I will have to concentrate on getting them up. Due to get blood trans next Fri - that keeps Luke quiet and compliant for a while.

Newly diagnosed with AML

2009-07-23T12:00:46Z

Hello everyone - I was diagnosed five weeks ago with AML - it was a terrible shock as I had been out cycling and felt a bit faint - when I got back to the house still felt a it off - blood tests and bone marrow came up with AML. I am a very young and fit 57 - or should say I was. Apparently because of my bizarre chromozomes chemo only had a very slin chance of a cure - 2-4% so I decided not to put myself through hell and then die anyway. They are monitoring me and so far I have been very well - they will keep me topped up with blood and platelets and I am on anti virals anti biotics and anti fungals. Also I have been to see a homeopathic specialist and am on other supplements. He does not say he can cure me but that he can help me. I just have to hope for the best but my prognosis is not good - 6months - a year if I am lucky. Most of the time I am very positive and determined to deny the prognosis but other time I get quite down. I am hoping a support group like this will help - I am sure it will. All the best to all of you.