Tag Archives: donor transplant

Deja Vu DT-PACE

Yesterday we went to our clinic appointment to find out how things were going. We bumped into Sean in the waiting area, which is always nice, along with a couple of ladies who also have myeloma. As it turned out the results of the bone marrow biopsy weren’t back but other results were and a plan for the next step had been formulated.

My blood counts are measured once a week at the moment. The blood is taken while I’m having dialysis and this means I don’t need to be stuck with a needle – which is always a plus. So my blood results from Tuesday (24 January) were –
haemoglobin – 8.3 (normal range 11.8 – 14.8 for women) This would explain why, although I’m feeling better, I don’t feel completely like the energiser bunny. In renal they don’t routinely give blood to increase haemoglobin, they use ARANESP which promotes an increase in the production of red blood cells. It takes longer to have an effect than a transfusion but apparently if you’re on the kidney transplant list the use of blood can cause issues with antibodies. The doc said that haemoglobin is usually the last count to get back to normal. Today it had gone up to 8.6.

WBC – 4.3 (normal range 3.5 – 11.0)

Platelets- 451 (normal range 150 – 400) B was bothered by this and, despite me having told him that the normal range went up to 400, kept asking me to check and even when I did double check with a print off of blood results straight from the hospital he still asked the doctor yesterday – mind you the doctor said 350 so B probably won’t believe me in future anyway – he’d already asked whether I’d written the number down wrong. Fortunately I was able to point out that a nurse wrote the figures down for me. It turns out that the increase is likely due to dialysis and is nothing to worry about.

Although the results of the bone marrow trephine were not back, the aspirate sample not being measurable (which has happened before), the paraprotein result as at 19 January was *drum roll please* – ‘no detectable paraprotein found’. My IGA level (the type of myeloma I have) was previously 24.09 and at the 19th was 0.37 which is actually slightly below the normal range of 0.8 – 2.8.  And I’ll be tissue typed with regard to a donor transplant.

So I get to have another course of DT-PACE possibly starting this week. My name will go on the board and when a bed is available I’ll get a call. This week!! If I’ve not heard anything by Wednesday or Thursday I need to give them a ring. This week!!! Now despite having spent nearly 10 weeks vacationing away from home last year this is only the second time I’ve had prior notice of going into hospital – the first time being my stem cell transplant in 2010. This of course has produced a…

To Do List

Ring ASDA re the claim for Buddy’s allergy treatment – which they have declined as they didn’t receive some information from the vet along with declining a second one sent which was below the excess. Now I thought because it all related to allergy treatment they would have just tagged it on and as the total bills are around £1,000 it really needs sorting

Download films/games to netbook

Buy pyjamas – because they always come in handy?!?!? Although B wouldn’t even contemplate a trip to Primark yesterday

Buy sponge

Connect the xbox to the internet – essential of course

Buy small fridge – the lady in the next bed in June had a little fridge which I have to admit at the time I thought was more hassle just bringing it than it was worth in, but realised in November/December that they are actually really handy to completely avoid warm yoghurts and milk going off

Buy some soft bras along the lines of the ‘ahh bra’ I saw advertised – because it’s so uncomfy to sleep in a regular bra BUT and that’s a big BUT there’s always the issue of being attached to stuff which makes it impossible to change in and out of bras (or tops) as easily as usual. Plus when you get plucked from your bed for dialysis in the early hours without warning it would avoid having to sit with a blanket clutched around your bosom (or barms as I learnt they could be called yesterday) because you were half asleep when collected and neglected to register that the short sleeve pale jim jam top was wholly unsuitable for public consumption

Buy badger lip balm – my lips went all peely last time. They have some lovely interesting flavours – pink grapefruit, lavender and mint – but I went for unscented in case some of the interesting loveliness made me puke.

Buy shower gel

Buy material – despite going to the fabric shop, Abakhan, yesterday (we didn’t walk, we parked closer) nothing jumped out and said ‘Use me to back your Christmas embroideries’. What do you mean ‘This could wait’?

Send three emails I’m behind with

Make soup – I’m not really a big fan of tinned soup and considering how my mouth went last time I started thinking that homemade soup would be a good idea. B could then heat it up and bring it in – when I floated this past him last night he didn’t think it was as good idea as I thought and as I discussed it with him I realised that when my mouth was sore I didn’t really eat much of anything so I’m not too sure how good an idea it was not even considering that when Auntie Ann and B brought soup in I returned it

Make pasta sauce – see above

Order B’s facewash

Make a decision and order Auntie Ann and Uncle Ray’s Christmas present – one of the last I need to sort out

Send one of the Christmas presents I have got

Pay credit card bill

Buy new laptop – Currys have admitted ours can’t be located so are giving us enough to buy a similar spec one. Of all the things on my list B was so taken with this one he planned to go this morning but then remembered that I had dialysis and Auntie Ann is visiting this afternoon so he’ll either be pushing her out of the door or I have a feeling we’ll be going tomorrow

Sort out a knitting pattern – I quite fancy something wearable for me, but it would need to be uncomplicated due to potential lack of concentration so nothing multicoloured as the four colours on a row were too much last time

Buy wool for knitting pattern

Take before and after photos – When I said this to B yesterday he looked at me quizzically ‘Not of me.’ I said ‘Of the dining table’ because by the time I get home it’s usually hard to tell what colour it is for the piles of post and other miscellaneous detritus

Check dates new series are starting on Sky and add to planner – ohhh, two start when I’m potentially away so I’ll need to remember to remind B (if we get a laptop I’ve told him I can email him requests) but with the new HD box which has a gazillion hours of storage he won’t be asking me this time what can be deleted. BUT if I got him to run an extension down to the lounge so that we could hook the Sky box to the phone line (don’t tell Sky as permenant connection to a phone line is part of the contractual requirements) I could set recordings from my bed. I think we’ve got everything he’d need – drill – check, bit long enough to fit through cavity wall – check, extension cable – check, enthusiasm – ch… well, what do you reckon? And I think I forgot to mention that when I order the new box we also go £100 of Marks and Spencer’s vouchers which more than covered the cost of the box. We very rarely shop there mind but that’s not the point when they’re free

Take library books back – I’ve only had them since September. Don’t worry I’ve renewed them so it’s not as if I’ll need a bank loan to pay the fines

Get new book to read – if they’ll let me have anymore

And… no wait, I think that’s actually it. No it’s not I now have a new one. I made a pram/cot blanket for one of the health care assistants last week and one of the nurses asked about one today. After initially declining I thought, well it’s easy and would give me something to do before going in to stop me adding to the ‘To Do List’ and she’s happy to wash it herself if I finish it whilst I’m in. Never one to miss an opportunity to show off my handiwork here it is…

Double knitting yarn on 4.5mm hook using daisy pattern it measured 75 cm x 94 cm.

Now I have actually done two and a half of them already. There’s nothing like a bit of pressure to make one get one’s finger out but how did I manage a half? Well I rang ASDA about the information they needed from the vet but neglected to ask them about the second claim. Doh!

Hiding from myeloma

When we got home from the Royal yesterday B was getting changed and Bud was lying on the bed taking it easy after giving us a riotous welcome (we had been out six and a bit hours of which five and a bit were actually at the hospital). B threw his clean T-shirt over Bud’s head and he didn’t move.  He did it again, Bud still didn’t budge.  The third time not a twitch.  This is exactly how I felt about myeloma by the time we were leaving the Royal.  I wanted to cover my head with a T-shirt and deny all knowledge of it.

We didn’t get to see the Prof, despite what he said last time, however we did get to see a very nice lady doctor that we had seen before.  When B expressed his surprise at this she did say we could see the Prof but we said it was okay. (I must remember, amongst all the other things I haven’t yet told you – Boxing Day part 2, Daughter of Cujo part 2 and how to get a fantastic deal on your phone bill – about the old block one time who wanted to see the ‘top man’.)

When we asked about the donor transplant (oh, note I said ‘the’ and not ‘a’ that must be a subconscious leaning towards having one) and them not being common place with myeloma she said that not many patients are young/healthy enough to even be considered for an auto (own cells) transplant let alone an allo (donor cells).  Aggressive treatment is the best option for young patients.

One of the things I had never asked about previously was cytogenics and whether I had any of the chromosome deletions that can signify that the myeloma is aggressive.  I knew that this wasn’t run on my first sample two years ago and the doc is checking what happened this time as the sample is sent to the Liverpool Women’s’ Hospital for further analysis.  I figured this would help with the transplant decision.  The doc mentioned FISH and I said that I’d seen that on the internet but that was a FISH too far (well Thursday night it was) and when I got to this things stopped making sense so I stopped reading.  Apparently if I turn up with anything from the internet I need clarification on they will be happy to do the clarifying.  Anyhoo further in-depth analysis, such as cytogenics and FISH, are the key to the future of myeloma treatment being personalised to the individual patient.

My paraprotein level after the second cycle of Velcade/Doxorubicin was ‘not detectable’ –WOOHOO!  So we went from not detectable in November ’10 to ‘detectable but not sufficiently to quantify’ on 31 December ’10 and 15 in the sample taken on 9 February ’11.

And, if you remember, I didn’t want to know the percentage of myeloma plasma cells in the bone marrow biopsy from February – at the time of getting the results the doc said it was high and that was enough from me.  However in light of having to make a further decision I asked.  It was 90%.

By home time I was all myeloma-ed out.  I didn’t like biology at school.  One year I came sixth in the biology exams whereas in physics and chemistry I came first, without trying.  I don’t naturally have a biology orientated mind.  Now I suppose I could become the perfect patient and do the same as two old ladies I overheard do – ‘You just tell me what to do and what tablets  to take doctor and I’ll do it.’ and it alleviate this problem.  I could be googling knitting and ohhhing and ahhhhing over the complexity of patterns and my FISH could be battered with chips and mushy peas.  However since I don’t think that’s gonna happen I guess I’ll have to get use to uhhhhing over x-rays, tissue samples and case study descriptions and my FISH deciding what treatment I need and if the myeloma has mutated.

After leaving the Royal at 3:45 I was lacking my usual enthusiasm in relation to food and we decided not to go for a meal (much to B’s relief as he had literally nodded off whilst I was getting the Zometa) or to get our youngest nephew’s birthday present, but just to go home and get a takeaway for tea – although by the time we got it 21:00 I guess that could be classed as supper.

We didn’t get cycle four started yesterday.  The Velcade and Doxorubicin was prescribed for Monday. I think this was possibly because this is the day they usually start, whereas mine have always jipped the system and started on a Friday.  There may also have been a delay with the notification from the doc to the pharmacy because they had to check the dose was the same as I had put weight on since I was weighed four weeks ago! A Friday start had suited me well because I got to have B at home to cater to my every whim, hold my ball while I had a shower at whatever time I wanted and, the big plus, it’s shorter.  What?  It is!  We all know that weekends pass by quicker than week days.

Blooming ‘eck

Last Thursday when I went for my PICC line care I asked if the shingles thing would delay the next cycle of Velcade and Doxorubicin due to start this Friday.  When I subsequently spoke to the haematology pharmacist on Friday it turned out that I would need a clinic appointment on Friday in order to begin the next cycle anyway.  My clinic appointment had come through for 20 May.

On Monday the pharmacist rang to say that I now had a clinic appointment on Friday and as, from my description, it sounded like the shingles would be well and truly cleared up by then we would probably be able to start cycle four, this being the last one.

However the clinic appointment turning out to be this Friday rather than in an extra weeks time has caused a tiny bit of an issue.  I intended on sorting out my list of questions relating to a donor transplant to ask at my appointment and basically other than the initial questions which popped to mind after my last one (about three) I haven’t as yet compiled a full and exhaustive list.

I asked B if he had anything he wanted to know and he informed me today that we would go through my list of questions tomorrow – so that should take all of 30 seconds then.

However although I don’t have a list of questions that could affect a life or death decision (wow bit strong but I guess that is basically the top and bottom of it, or at the very least a life pro-longing decision with the slight chance of the ‘c’ word – cure – depending on the donor cells) I do have this…

Yes, its a tea cosy.  Not for us, since our tea pot, which had to be brought down from the back of a top shelf looks like this…

I had to remove it’s top for photographic purposes and shoot it from above as it was still showing it’s bottom!

One of the sisters from the Day Unit at the Royal was making a couple for her cousin to put in the Marie Curie shop she manages as she is having a tea cosy bananza in June, I think.  I had previously provided some wool for a loopy sheep pattern she was doing – aren’t I good?  Well actually I was given the wool by a neighbour, so, not really but when I needed a small knitting project I thought why not do a tea cosy. The pattern for which was free and can be found here.

I’m not too sure how well this will go down on Friday…

Prof:  ‘Do you have any questions?

Me:  ‘Yes, do you like my tea cosy?’