Tag Archives: revlimid

A Non Bare Bear

Darn, as Ernie pointed out I missed a prime opportunity in the title of my previous post when I could have gone with a play on a Bare Bear!  Anyhoo said bear is now fully clothed – well nearly.  Although he looks fully attired his goggles need a press stud and are just tied on and his little jacket needs an open ended zip/zipper.

Oh, and his jodphurs require a bit of white shirring elastic but other than thathe’s fully dressed!  The pattern is again from Teddy Bears: More Than 25 Irresistible Designs for Knitted Bears by Debbie Bliss.

As you can clearly see I got the loopy knitting finished whilst at the hospital yesterday.  I did have to adjust the pattern as keeping to the instructions was only sending me loopy not the yarn.  In fact I also managed to reknit the goggles as the first pair were 12cm/4.76″ short.  And then I ran out of knitting, seriously I had nothing left to do, no book to read, I did write out my Christmas present list again, got about five cups of water (they are very small cups) and went for a wee – which was a feat in itself let me tell you due completely to my choice of attire – and then fortunately my Auntie Ann appeared – but back to my clothing.  

When we have an appointment with a doctor/prof at the clinic I make at least half an effort (although they may disagree) due to the fact that, as you may recall, we go into Liverpool for a meal but when I go to the Day Unit, for treatment or when I’m feeling ruff, I go casual to the point of completely un-ironed in some instances.  So yesterday morning I was all of a do-da – an appointment with the Prof but in the Day Unit – what to wear? Anyhoo, the decision was made for me – I ironed a pair of trousers only to find I didn’t have a suitable clean t-shirt so I ended up wearing a dress with tights.  I also ended up getting two units of blood and let me tell you, if you don’t already know, it is quite a performance dealing with tights while you have a cannula in the back of one of your hands – but I’m getting ahead of myself.

I got there at 10.50am for my 11 o’clock appointment – I was early as B wasn’t involved, my Uncle Ray provided transportation.  I saw the Prof and he asked me how I was.  I said I didn’t feel ill but had been tired – and he said yes I would be because I was anemic.  So I got to have two units of blood – I could have gone back today but whilst I was already there I said I might as well stay plus if I did I’d feel better sooner.

Due to my haemoglobin count (7.6 – normal min for women 11.8), white blood count (2.6 – min 3.5) and neutrophils (1.00 – min 2.0) the next cycle of Revlimid has been delayed.  I go back to the clinic a week tomorrow (11 November) and will, hopefully, start cycle two then but this may be reduced to 10mg every other day or 5mg a day.  On the upside my kidney function has improved again and my PP (I think rather than my IgA – you’d think I’d know definitely wouldn’t you) has gone from 15 to 10! We’ll just need to wait until my next bone marrow biopsy to see if it affects (ie, squashes and stomps on) the plasma cell content of the bone marrow.

My appetite was better yesterday I’d managed half a sandwich for my lunch with a bag of french fries (which are a crisp/chip) and for tea I’d been craving spag bol (which is so much easier to type than spaghetti bolognese).  Due to the tiredness I fortunately hadn’t decided to make this from scratch so B had got a ready made jar to go with some mince. However subtle hints to B on the phone such as ‘Are you going to make the bolognese?’ hadn’t worked so I got home at 9.10pm (hence my Auntie Ann collecting me as B had gone to work) to find the meal still in kit form.  And you know what I did – I made it!

I’m not going to say it was without incident – I ended up with about a quarter of the spaghetti I started with due to a colander and sink incident – but I really enjoyed.

I’d done the mince and the sauce before going upstairs for a shower and realised we had a couple of phone messages.  So I had a quick shower, put the pasta on and phoned one of my friends back and had to do something I rarely do, I had to say I couldn’t stay on the phone long as I was cooking pasta.  When she called round this afternoon she said she got off the phone and said to herself ‘She’s been out nearly all day, she’s not been home long, it’s 10 o’clock at night, did she really just say she was cooking pasta?’ but apparently I looked and sounded a lot better today – totally like someone who could deal with cooking pasta at that time of night!

More creative spaces can be found here.

A nude aviator bear

I finished knitting my second bear and while sewing it up made the same boo boo I’d done with the Pyjama Bear – I sewed an arm up and then I sewed the second one, except it wasn’t the second arm it was the back of the head!  Fortunately I realised before I’d actually finished sewing it up this time.

I thought this bear’s clothes would be a complete doddle after the pyjamas.  HA! The goggles are a ‘little’ too small…

and my loopy knitting didn’t look anything like this…

I really should have taken a photo to show you just how unlike the knitting in the book it was.  But ‘tomorrow is another day’ and it’s the day to crack loopy knitting.  It’s also the day I go to see the Prof at the Day Unit.  Uncle Ray took me for my blood taken yesterday and I had an amazing experience – I was in phlebotomy all of five minutes and that included having the blood taken!

The current issue of Myeloma Matters arrived recently and there was an article on kidney issues in it – which was good and bad.  Good in that information is good and bad in that signs of kidney issues include nausea, er yes, and fatigue, well kind of, in that I do feel tired as opposed to ill but feel better after a nap so it’s not really fatigue.  Plus I do know that a friend on Revlimid, albeit a higher dose, can sleep and sleep, particularly if he over-does it.  And my, shall we say waterworks are fine both in frequency and well, colour (don’t be trying to tell me I’m the only one who checks it looks like light straw, okay obviously not actual straw because that would be just wrong).

I’ve still not got my appetite back but guess what, that’s listed on the side effects for Revlimid, along with nausea (‘cos I’ve had a bit of that) and tiredness. There’s a whole bunch, and I mean WHOLE bunch, of other stuff but I skimmed the majority and just looked for what was relevant to moi.  As the leaflet also says about taking dexamethasone I think some of the numerous side effects relate to that too because I certainly don’t remember so many being listed on Thalidomide.

I must be driving B potty with the appetite thing but he’s only nearly cracked once when I was completely unable to come up with a shopping list for the following evening’s meal – after I’d had to fry a piece of chicken as the grill has bust and the lingering smell was putting me off.  I either feel like something one day and when I get it I don’t eat much or I enjoy something so B stocks up on it the following morning and I don’t want to see it, let along eat it ever again.

I have however hit on the possible cause of some of the tiredness today, and also the reason for my headache of the last couple of days – caffeine.  It’s not like I drank a lot – two cups of tea or coffee a day but I’ve been off that too.  I didn’t have much choice of a drink before Armchair Yoga, or rather there wasn’t much I liked the thought of so I went for Pepsi and not only did I feel decidedly perkier my headache disappeared too.

Oh, oh and Bud and I went for our very first proper solo walk yesterday (I did however have two naps later) – as in solo together without B – all three of us had been for walks Friday, Saturday and Sunday.

Speaking of Buddy look how neat he is – he stacks his little legs while sleeping…

unlike B who’s responsible for the tissue box on the floor and since we’ve been ejected from our usual venue for Armchair Yoga, the next three weeks at least are being held in our lounge so needless to say the tissue box will have to go.


Clinics and chips & egg

B and I sat in the consultation room on Friday and the Prof walked in, sighed and touched B’s arm as he was passing and I thought ‘We’re screwed!’ – okay, I lie and you know I’m always completely honest with you I actually thought ‘We’re f*&%@d!’.

And then the Prof threw me by asking about that conversation with the young doctor a week ago – but I guess that’s why he’s paid the big bucks to keep one step ahead of the patients and keep us on our toes.  We decided I didn’t need to continually be told it was serious and when I said that I’d thought it was maybe because I was generally happy and that the young doc had thought I didn’t have a full grasp on the situation the Prof said that just showed that I was coping well.  B pointed out that we’d known it was serious from the start and the Prof said yes, but that was before any treatment had been started and it was now seriouser.  At the start there was the possibility of squashing it and even when it relapsed in February but now it was more a case of keeping it under control for as long as possible whilst keeping a good quality of life –  as obviously the past few weeks hadn’t exactly been top form.

So once again I have to be different and although myeloma is an individual disease mine is being particularly individual.  It would appear that my paraprotein level doesn’t go that high which is deceptive because of the large plasma cell content of the bone marrow.

Revlimid is known to affect kidneys and it would appear that the 25mg dose did that.  My kidney function had been good for the last year, as evidenced by the black figures on the Prof’s screen, and then from the first tablet of Revlimid the figures went red.  Things seem to be on a more even keel on the 10mg dose.  The myeloma suppression of the bone marrow (and therefore blood production) seems to have eased up as my blood counts are better (I only got my platelets count which had gone from 33 whilst in hospital to 130 – WOW – minimum normal range 150).  I asked if things really settled down with regard to kidney function whether the dose could be increased and that is a possibility.

So we know that the transplant doc had said that the best option would be a donor transplant, and indeed without one the prognosis was really poor, but that the plasma cell content of the bone marrow would need to be reduced prior to it and basically at this dose I don’t think the Prof was confident that it would reduce it enough/significantly – this was reading between the lines he didn’t actually state it in as many words.

I had six days worth of Revlimid left and then a week off.  The Prof said he’d see me at the Day Unit on 2 November as the clinic for the following Friday would be really busy as he was off the week before.  I asked whether I needed to take the Fragmin injections on the week off and although Revlimid is theoretically less likely to cause thrombosis than Thalidomide it was advisable so I wasn’t coming back blaming the Prof if I got a clot.  Oh, and a fellow patient and his wife, who I met the day I was kept in the Royal last, gave me a tip that he’d been given by a nurse – pop an ice cube on the area you intend to inject and you don’t feel a thing.  Not only this I’ve found that it doesn’t leave a bruise either.

We’ll look at getting a further bone marrow biopsy late November/December to check the plasma content then.

Good news with the MRI – nothing new – C7 shows 50% compression but everything is fine with the spinal cord.  I also saw the results on the screen and missed the opportunity to ask if the ‘benign sinus disease’ referred to was actually snot.

Overall Friday I felt really good.  B commented to me and the Prof about the sprightly-ness with which I got out of the car.  And I had a shower Friday night!  What the heck has this got to do with the price of fish I hear you ask.  Well when I’m feeling tired or in need of clearing my mind I CRAVE a bath – I generally nod off risking dunking the book I’m reading but I feel better for it yet Friday there I was in the shower and I realised that not only did I feel better physically but I felt better generally for seeing the Prof too.

AND I popped the cushion covers back on the cushions after over a week of them being naked – it’s a big job as they are sewn shut – I may have mentioned this before – which seemed like such a good idea at the time I made them instead of fiddling about with button holes.  DOUBLE AND we had egg and crinkly chips (fries) when we got home Friday as my appetite is generally getting better (and this is what I felt like) although I have lost 3kg (6.6 lbs) over the past weeks so I’m in no rush to put that back on unless it’s muscle – I wonder if Bud could spot me for a set of bench presses!  Buddddddddy, come ‘ere!

Guess where I am? Go on guess. Guess. Guess. Guess. Guesssssssssssssss!

The Royal!  There’s no prize so if you got it right you’ll have to settle for a little hand clap and a cheer – it works for Bud.

I had my appointment for today to take blood counts and see a doctor if necessary.  And of course when I mentioned my weekend temps it was necessary.

I was also quite sick just before bed last night – just as in I got up to go to bed and had to rush upstairs with my hand clutched to my mouth and hoping that Bud wouldn’t get in the way.  He didn’t and I made it to the toilet before regurgitating anything, well actually it was more like everything, everything I’d ever eaten.  After I’d cleaned the loo, the floor (just a bit) and the basin, I had a wash and changed my jim jams, oh and somewhere in-between I blew my nose about 50 times as it was one of those times (and its gross but I’m gonna share) that some of it came down my nose!

Bud and I then went to bed and we had a very disturbed first half’s sleep.  I insisted on having the window open (to reduce any potential temps) and Bud wasn’t happy with this because it was windy.  Okay, seriously he won’t really settle if the window is open and the curtains blow in as he knows at some point the bedroom door will slam shut and he just doesn’t like it.  So he was a little agitated from the start but I think because I was so tired by them I nodded off regardless however it is very, very difficult to sleep when your staffi is attempting to – well I’m not too sure what he was attempting but it involved him almost sitting on my head and constantly shifting position and then jumping off the bed on my side and going onto the landing and then jumping back on the bed from the door side and starting the whole thing again, getting more agitated whenever the door rattled a little in its frame.  The final straw was when I attempted to push him away and in doing so ended up on the edge of the bed.

I got up, went downstairs and made myself a honey, lemon and water, got a little snacky poo as I was a little peckish, took my temperature (38.3°C/100.94°F), went back upstairs, kicked Bud’s basket across the landing and used to it wedge the door well and truly open.  Then I settled down on the bed, had my drink and gave Bud a stern lecture ie, ‘If you don’t settle down I will put you out on the landing with your basket.’  He obviously heeded me as the next time I woke up it was with B telling me it was 08:10 and asking me how I was – it turned out apparently I was grouchy – stating that I would have felt better for a good night’s sleep.  Temp was 38.0°C/100.4°F.  Took some paracetamol.

Uncle Ray took me and my ice lolly (or lolly ice as they say in scouse land) to the Royal where blood counts were taken.  Temperature taken later showed up to be 37.5°C/99.5°F and then later still 37.2°C/98.96°F!

I saw the doctor from Friday and then the registrar from last week who basically said that despite me pulling my lip he thought it was preferably I stayed in due to the really high temps at weekend which he did not consider were disease related.  Plus he heard a heart murmur to which I said isn’t that a symptom of myeloma (from my experience earlier in the year) and he said it can be put he wanted to rule out any change of an infection there so I’ll be having an ultrasound.  There’s also been blood and copious amounts of various antibiotics and tonight and tomorrow NO REVLIMID.  I only found this out at 22:00 tablet time so couldn’t argue, I mean, discuss it with anyone ie, a doctor.

I personally think that my temp starting to drop since yesterday morning, okay the odd spike but generally under 37.5°C/99.5°F, is a result of getting the Revlimid into my system and I feel sure that if I’d taken it tonight along with the unit of blood received so far and the next one to be given after the currently hooked up antibiotics have finished, it would have resulted in a temp spike in the morning and then pretty regular temps for the rest of the day.

But hey we shall see what tomorrow brings.  What I’d like it to bring is some peices of calico, red embroidery thread, wadding and a pattern but I have a funny feeling that might be some peices of calico, red embroidery thread, wadding and a pattern too far for B!

In the pink…

well if the pink was a radical experiment in tie dye involving khaki green, pucey yellow and mucky orange.

I left the Royal on Wednesday and said to B that I felt better than I had in weeks, however after pottering about doing a couple of things I was a little tired and then my Auntie Ann and Chris phoned to see how I was doing and I was a lot tired so I went to bed about 22:30 after taking my new 10mg dose of Revlimid.

I awoke on Thursday morning to find my temperature was 38.9 – doh!  However after I’d dragged myself out of bed, had a milky coffee made by B and come to I didn’t feel too bad at all.  So in order to have a creative space I thought I finish the three and a half Myeloma Buddies I’d knit on Wednesday (more proof of feeling better).  I got one finished and then about 11:00 I literally keeled over on the settee for a little snooze.  It was 14:45 before I got off the settee again – prompted by B’s alarm going off but no sign of him getting up, the fact I could take some more paracetamol and the thought that Bud had had his legs crossed for long enough.

(And that’s where I got to last night when I was feeling a bit better but then B brought me a meat and potato pie, about 22:00, and I just ate the filling and then rushed upstairs as I was sure it was going to come back.  However I realised that standing over the toilet bowl makes it almost compulsory to be sick so I ended up sitting on the settee for the next half hour with one of Bud’s poop scoop bags!)

So back to Thursday I awoke to find the remote control had dropped off the arm of the chair onto the floor and would need me to get off the settee to get it.  It stayed where it was and I endured one and a half episodes of ‘The Jeremy Kyle Show’ (like a cross between Jerry Springer and Maury), and something I would normally walk on hot coals to avoid watching.

B asked if he should get someone to come round on Thursday night, but Chris was already coming over as she hadn’t been able to visit me in the Royal due to a cold.  So Chris stayed until 23:00 when I could take some more paracetamol and I then went straight to bed.

Friday I awoke to a temp of 38.8.  We were due at the hospital anyway to have blood tests (which is one of the reasons I didn’t ring in on Thursday.  Blood was taken and I mentioned by my temp had been high (but I didn’t give specifics).  When the health care assistant took it it was 37.9 (38.0 is the deal breaker) so after consultation with one of the nurses she came back and said that one of the doctors would see me.  And then when she asked for more details of the temps and I said 38.9 and 38.8 I got a look that said I should know better than to try and keep that to myself.

We saw the young doc (who I was very impressed with) and after checking my chest, heart rate, stomach and we had a temp discussion, he asked what I’d like to do and I surprisingly said ‘Go home!’

Doc:  ‘The only thing that worries me is that…’

Me:  ‘it’s the weekend.’

Doc: ‘Yes.’

So we had a discussion as to how bad I felt on Thursday but that I did feel somewhat better on Friday – I’d even forced myself to do some knitting because I thought if he asks the nurses how I seem and I’d not been knitting I could end up in a hospital bed.  The doc went to have a word with a senior colleague about oral antibiotics and I have to admit, it took quite a while – I don’t mind waiting but B gets a bit antsy but even I started thinking ‘Oh no, they must be looking for a bed.’

Needless to say we made it out with well wishes from the doc for an uneventful weekend, some co-amoxiclav, a can of natural lemonade and a bag of Frazzles.  (Look I know they are about as natural as Pamela Anderson’s chest but for some reason when I’m off food I can always get a bag of them down, preferably with a glass of milk.)  After we got home I had a little nap and then B had to literally drag me off the settee for a shower before bed.

Yesterday morning my temp was about 39.2 when I got out of bed at what turned out to be 07:45 as the phone rang and I had no idea what time it was but it was still dark and of course a phone call then needs to be checked out.  Anyone like to guess who it was?  How did you know – the m-i-l!  So I took some paracetamol and then went back to bed and then really unusually for me stayed there until 11:20, as mentioned before, normally I still have to get up and lie on the settee ‘watching’ something on the TV and not missing out on anything.

I basically slumped on the settee for the rest of the day with a cool bath around 20:00 as my temp went up to 39.7.

However today, things seem to have take a turn for the better.  When I woke up my temp was 39.0, I nearly had a hissy fit as I couldn’t get Bud’s tin of tuna open and it was all too, too much – back of hand to forehead dramatic gesture – (the current tin opener is my nemesis – I think it gets confusing because even though I’m right handed I do a lot of stuff with my left), then he didn’t eat one of his antibiotics so I encouraged him and when that didn’t work I bent over to point to the tablet more directly and had a coughing fit which left me gasping for air.  This frightened not only me but Bud who when I suggested he might like to give it another go backed out of the kitchen doorway wagging anxiously.

I decided that what I REALLY needed was a glass of hot water with lemon and honey, so I made myself one and took it through to the lounge with a glass of water (as I’d decided that what I also needed was to keep my kidleys flushed – it’s not that I’d not been drinking but rather than the usual glass full at a time I’d seemed to be having tiny sips all day long).  As I attempted to settle on the settee, trying to keep Bud far enough away for me to get comfy first, I knocked the glass of water/lemon over – the whole glass!  I felt so tired by this point that I just sat and looked at it for about 20 minutes.  Bud however wanted out so I sent him upstairs to B and then he wanted back in but the only way back was through a lemon pond (as I let him leave over the arm of the chair which is strictly verboten) so he got sent back upstairs again.  Fortunately B took Bud’s unusual behaviour as a sign that something was up and I was literally popping the first pieces of kitchen roll on the floor when B appeared and took over – and I let him.  Apparently he woke up hearing me say ‘I’ll get a taxi home’ but didn’t know where I’d been or if I’d had a good time.  He’s currently having a little kip to catch up with lost sleep.

And now for the good news – my temp taken three times within the last hour (just in case the thermometer was overworked and was giving out duff readings) was 37.3! And once more, just for the hell of it, 37.3!  The French door is open mind and I have no socks on, whilst B is taking his nap in a jumper.  But he doesn’t mind as apparently the high temperatures have been worrying him.  I do still feel a bit tired but generally a lot better.

I go back to the Royal tomorrow (it should have been Tuesday but because of temp spikes/unwellness it was brought forward to Monday) for full blood counts, liver/kidney function and possibly a once over by a doctor.

And because I like ending on a high I’m typing this last bit on top of some shelving.  Just kidding!

Now I know we’re not all knitters but I would be grateful if those of us who are could point me in the direction of a banana cosy knitting/crochet pattern if you’ve ever come across one. WHAT? Don’t be rude – seriously you can knit cosies to keep your apples clean and apparently you can also knit them for bananas.  But I want a nice one – one of the ones I found was like a loosely knitted mesh bag with a draw string top made by someone with the knitting skill of a three year old and looking a whole lot of ambiguous regarding usage!

The value of a life

Well it looks like we’ll have to wait until Friday for the conclusion of the Wedding Daze trilogy.  I don’t tend to type ahead – I’ve done it very occasionally but it doesn’t seen to work for me.  So I sat down to do it when B went to work but intended get rid of some paperwork beforehand.  While doing this I decided to watch Should I Test My Genes in BBC iplayer – a friend watched it last night on the TV and said it was interesting.  I happened to google the writer as I thought Chris has told me he was a doctor but I wasn’t too sure about that.  As it turned out that he was science writer Adam Wishart who was the responsible for the award winning documentary The Price of Life which was broadcast in 2009.

I had read about this in the Myeloma UK newsletter and it had been seen by the same friend at the time it was first broadcast.  I however had never even felt the urge to see if it was still available online and now I’d just stumbled upon it.  It’s about the approval by NICE (National Institute for Health and Clinical Excellence) of drugs for use by the NHS and features the assessment of Revlimid (Lenalidomide).

The interim decision made by NICE was that Revlimid would not be available because it was not cost effective at the price requested by Celgene and the Government does not allow NICE to negotiate price reductions with drug companies – well yes, that makes a whole lot of sense.   However after a change in the rules the £30,000 per patient per annum cap was lifted for end of life drugs which applied because Revlimid was deemed as being for patients who hadn’t got long to live and I just loved the quote…

‘The question boils down to this – how much more valuable is one year of your life when it comes at the end of your life.’

Apparently for a myeloma patient needing Revlimid a month is worth 1.4 times that of a ‘regular’ patient.

Celgene had however helped out by offering the drug free for each patient after the NHS had paid for it for two years but even with this it came down to a nail biting finale (yes even though I knew the outcome and I’m not a nail biter I was almost sorry I’d cut them yesterday). The votes cast were nine for and nine against with the chairman making the casting vote – it was (obviously) approved.

I found the whole thing quite disturbing.  My life is in the hands of my doctors and, although I ask questions, I trust them with it.  However to think my life could at some point be in the hands of the NICE process was frightening.  At the risk of being sued or making any dockers reading blush I will keep my more colourful comments to myself – although I didn’t before as evidenced when Bud felt the need to leave the comfort of the bed three times to come and check everything was okay – I don’t raise my voice or curse venomously often but he doesn’t like it when I do and you know – it’s not NICE!