Category Archives: Allogenic stem cell transplant

I have no idea what to title this one

I had been planning on my newest post being titled ‘You’ve got to be codding’ – codding being a word interchangeable with kidding and in this instance relating to a cod liver oil capsule that was taped to the back of my head during the recent MRI.  I don’t know who was more surprised – me on removing the tape and finding the capsule or the radiologist on me handing her the tape and her finding the large quantity of very short hair attached the tape.  However in light of the way today’s gone this isn’t the post I anticipated.

Today, and from yesterday afternoon really after getting a bag of blood in the early hours of the morning, I’ve felt so much better in myself.  I haven’t felt bad, bad but tired and certainly fuzzy round the edges.  In fact I think it was Tuesday I had the blood because thinking about it that was the morning I had the MRI scans, heart ultrasound and lung function test then a bag of platelets and lumbar puncture in the afternoon – I guess I shouldn’t have been as surprised as I was when B looked at me incredulously when I said I couldn’t remember exactly how I’d got the big bruise on my right thigh – when he said Bud had done it it all came back to me but initially I could only recall I’d had some sort of mishap and absolutely none of the details.

Now let’s not get too excited about the apparent wellness I feel.  Although obviously while feeling well is a good thing it may be slightly trumped by actually being well.

I’ve had various medications stopped or changed to reduce the risk of seizures and indeed haven’t had any more.  I’ve had new potassium and magnesium meds as these levels were a tad low.  As of yesterday the results of the MRI on my head looked fine, the one on my shoulder showed myeloma lesions but needed comparing to a previous skeletal survey to see if any were new.  Initial results of the lumbar puncture didn’t show anything immediately obvious.  There was a slight increase in lymphocytes (one of the defensive cells) – normal levels are 5, mine were 14.  If they had been in the 100s some sort of blind treatment would have been required and if they’d been 4 or 6 they could have been left but 14 probably needed something doing but were of a level that could be investigated further to establish the correct something.

This morning the Ward Sister/Manager stopped by (well actually she was seeing to our room today so she’d already been by a good few times) to say that one of the docs had come out of the morning meeting to say that Prof or the other myeloma doc would be speaking to me and I may want a family member with me.  Sister had no idea of the exact topic of the discussion as she wasn’t in the meeting as she was tending to the ward today.  I said there was no point me even ringing B as he’d be in bed and the phone wouldn’t wake him so she said if I wanted she’d be there – I said yes.  I wasn’t ringing Auntie Ann as she isn’t even actually visiting today as it’s her last day in work – she’s retiring.  There’s a lunch out and maybe something after work so although I know she would have wanted me to I wasn’t messing that up.

I had time to google things like ‘myeloma lumbar puncture’ and ‘myeloma spinal fluid’ before Prof took a seat in my comfy chair while Sister, a Registrar and another doc, who I have to admit I’m not sure is yet a Registrar or not but who I like very much, took positions at the bottom of the bed.

Basically the lumbar puncture showed plasma (myeloma) cells and some of the damage to the shoulder would appear fresh.  In view of this despite the DT-PACE, and the seemingly shorter and shorter remissions between treatments,  Prof felt that he couldn’t justify the resultant loss in quality of life against possible benefit a donor transplant would provide – I think I have that correct.  I’m not going to kark it immediately but, baring a miracle, we’re not talking years and years but for the first time EVER the ‘how long?’ question was on the tip of my tongue.  No treatment specifics have been tabled but I said what I’ve now said three times I think, last November, on the decision to go ahead with a donor transplant and today, I’m not afraid of dying but I am of… ‘not trying’ Prof finished off.  I’ve never said this to him directly so it looks like they talk to each other.

The only immediate question I thought of was in view of the fuzziness I’d experienced and so I asked about ‘mental deterioration’ – I don’t know how come I was so formal – but was relieved to hear that wouldn’t be an issue.  Thinking about it and especially considering he said they were always very upfront with me that wasn’t necessarily a compliment!

Sister sat with me after the docs had gone, rubbed my leg and said if I wanted anything she was on a long day.  I asked later if one of the docs could go through it with B when he got here because there was no way I wanted to be the one to tell him.  That of course didn’t pan out because I couldn’t say everything was fine when he phoned after he got up but one of the docs is going to come chat to us when B gets here and answer the questions I have by now.

B’s just got here (well nearly an hour ago now) and is not thrilled that he won’t be getting to see Prof or the other myeloma consultant this afternoon but I’d just asked Sister if we could see the other consultant tomorrow anyway and B chipped in that he’d like to see the Myeloma Nurse too.  Sister’s just come back to say they’ll both call round two thirty tomorrow.

There’s not exactly a set treatment plan in this instance as it is a rare complication of myeloma, which I’d managed to work out for myself before I knew what it definitely was.  When I asked Prof about this, and he’s not exactly a spring chicken (I am in no way saying he’s old just experienced), he said that with me the total number of patients he’d dealt with personally with this complication was now 2 – I resisted the urge to ask what had happened to number 1.

Just call me ‘Arry

As in ‘Arry Potter since I’m residing in a cupboard albeit not a cupboard under the stairs (I cannot take the credit for that comment it was one of the sisters that made the comparison).  Maybe Harry Plopper would be more appropriate – a lá Homer Simpson’s pig in The Simpsons Movie.

I do have two doors but no windows.

And there’s my buzzer in there too – because I just knew you’d want to see it and well, I er, pointed my phone the wrong way to take the pic!

So what exactly have I been up to since I got admitted – let’s see…

I got to go out last Tuesday afternoon into Liverpool nearly shopping – only nearly because I got to the till in Primark with a pair of trousers, a cardy and about 350 pairs of knickers to find I was totally unable to remember the pin number for my credit card and even though Primark is a cheap shop the £2.00 and coppers I had in my pocket wouldn’t cover the cost of the items.

With B taking me out for tea as well I was shattered on Wednesday, my shoulder pain was also quite severe which didn’t help and when Auntie Ann suggested going home earlier than usual so I could get some sleep I didn’t exactly protest.  The day nurse had asked if I wanted additional painkillers on top of the paracetamol and Tramadol and I’d said that just at night would be good – the pain had stopped me nodding off on Tuesday night and then woke me up a few times.  Later in the afternoon I asked for some more but the junior doc said that with my kidney issues I could only have it the once.  It certainly helped that night and if the pain had persisted I would have asked for something else on Thursday but it eased considerably and has now gone completely.  An x-ray showed no myeloma damage but a ‘touch of arthritis’.

I got to go out for a wander on Tuesday as the DT-PACE treatment didn’t actually start until Thursday due to my peritoneal dialysis (PD).  It raised a number of questions – not least would I be able to do it at all through the treatment.  As it turned out I can and because I now have some kidney function the renal doc was confident that for the length of the treatment I could manage with 12 hours of PD per 48 hours.  It has resulted in me having to get up at two, three and five in the morning to pop the PD fluid back in.  It was supposed to be midnight but with the initial lot of drugs being a bit late arriving and the bags running slightly longer than 24 hours it got later.

The renal doc’s only concern was about doing the PD at midnight (and the blood registrar did ask if I’d need help from with it) and was a bit amazed at me doing at 3 am ish (ish because I slept through my alarm and the nurse had to wake me up) – but basically I much prefer this to going down to another ward for hemodialysis – plus it results in statements such as ‘I don’t think that was my wee this morning’.

I have to wee in a cowboy hat and note what I drink – technically referred to as a ‘fluid balance’ and this morning one of the health care assistants was concerned about the look of one of ‘my’ wees.  My hat’s are numbered, in biro, 9 – my room number.  This errant sample had what looked like a 9 on it and there is no other combination of beds within the whole ward that would result in a 9 other than my room.  Fortunately she had the wherewithal to check with me and we waited for my next one which was fine otherwise I could have had all sorts of things poked and prodded unnecessarily since it then looked like someone had incorrectly marked their deposit.   When you’ve done it at a time with a five in the hour slot and am somewhere after it I for one find it difficult to say I definitely had a wee never mind recall exactly what it looked like.

The big problem with the PD was that the fluid sitting working busily in the peritoneal cavity clearing out the toxins would have attracted quantities of the chemotherapy drugs which would have had a two-fold effect.  Firstly reducing the amount that circulated in my system going about it’s proper business and secondly potentially causing problems in that area – too much heavy partying going on and not enough working.

So the schedule before delays affected exact timings should have been –

Thursday 12 noon – drain PD fluid, start 24 hours chemotherapy

Friday 12 noon – chemotherapy disconnected

Friday 12 midnight – start night time PD

Saturday morning – change PD fluid

Saturday 12 noon – drain PD fluid, start 24 hours chemotherapy and so on.

The x-ray of the bump on my head showed no myeloma lesion so I got to have a biopsy.  I have to say I wouldn’t have been at the front of the queue to have a needle stuck in the back of my head but it was actually okay.  As there wasn’t enough material on the first go I got to do it twice.  It was just like being stuck with a needle for a blood sample but the ‘stuck’ sensation carries on and wiggles about a bit.  The lady who did it, who was a lace knitter and loves Ravelry, had a look in the microscope right outside the ward and said that nothing looked untoward but they would analysis it further.  I said I’d actually been thinking I may have always had a lumpy head but not noticed but it has gone down a lot today – Auntie Ann is leaning towards me having bumped it.

As it turns out that we have a match for a donor stem cell transplant I get to have an MRI of my head and shoulder to ensure there are no myeloma related surprises during the transplant.  The registrar mentioned this last week, not the match but the transplant – I didn’t ask about a match because I was concentrating too much on the thought of someone sticking a needle in my head but B and I saw one of the transplant docs on Monday and there are two ‘matches’ with exactly the same mis-match at CW something or other on the light bit of the relevant antibody – if I remember correctly.  It’s not a major one and another doc said that a minor mis-match isn’t necessarily a bad thing as it can help participate in the whole graft vs host and subsequent graft vs myeloma effect.  Something I did learn during the course of the conversation with the transplant doc is that it can be quite distracting to have a few grains of rice sitting on top of the end of your PD cannula which is itself tucked into your bra!  I was just tucking into the sweet and sour chicken and rice that B had brought me when he arrived and said I’d rather speak to him then than wait however I didn’t feel that rummaging down my bra to extract the offending food would have been appropriate.  The transplant could be in five to six weeks.

So back to my cupboard.  I was initially in a six bed room.  One of my fellow holidaymakers got swabbed positive for flu – a flu not already in the whole hospital so brought in by her or her visitors.  She got shipped off to a side room and the bed was blocked.  The five of us remaining got flue inhalers to take.  Another vacationer went home on Saturday and that bed was blocked too and the same on Sunday.  A frequent tripper here (who’s been partaking of the facilities every time I’ve been in since November) went home for a few hours on Saturday and had to come back to get swabbed as she’d had a bit of a cough.  The results on Monday showed a positive for another type of flu so she got a trip to an isolation room on the infectious diseases ward. Vacationer four had already left to go home on Monday so that left me on my own in a six bed room and because I was potentially contaminated that meant all the other beds were blocked so I got moved to the only cupboard, I mean room available.  It’s okay actually although I didn’t sleep too well the first night – I think it was too quiet!

Anyway it could be worse I could be on my hols in Torquay, like a friend, and be in isolation in my hotel room.  Chris phoned me earlier to ask if I was still in segregated and then informed me that they were too.  Her husband hadn’t felt too good this morning with an upset tummy and she’d mentioned this to the waiter at breakfast.  As she was getting ready to go out and leave hubby to mop his own fevered brow the hotel manager turned up, wearing a mask, and asked if she’d not go out or mingle with other guests in the hotel.  They’d had a few reports of upsets – they had checked the kitchens and any similarity in the food consumed and had found nothing that linked the cases in that respect but were being careful so she’s spent the day in the hotel room with hot and cold running room service.

The manager before he left said that room service would of course be complementary and she (hubby wasn’t up to getting out of bed let alone eating) could order anything she wanted but it would be really handy if she could order something thin they could just push under the door like pizza!

 

Get Well or Die Tryin’

Where to start?  The beginning is always a good place.  So, when a man and woman love each other very much they… Just kidding.  Let’s start with…

Thursday – Chris and I arrived at the Royal to ‘Are you in the diary?’.  ‘Yes, the myeloma nurse’ who I’d spoken to on Tuesday ‘booked me in with the other receptionist.’ We took a seat and shortly after got called through by one of the nurses who said ‘So you’re here for blood tests for tomorrow’s appointment?’

Me:  ‘Well no, I’m here to see a doctor about the numbness and do I have an appointment for tomorrow?’

Nurse:  ‘I’ll just double check with receptionist.’  On coming back ‘Yes, 10:10.  Do you want to wait to see a doctor now since you’ll be seeing the consultant tomorrow – more knowledgeable that’s why their paid the bigger bucks.  It’s up to you.’

So after having bloods taken we went into the city centre where Chris did a little shopping and we dined Zizzi’s – as they do Chris’s favourite ever meal Casareccua Pollo Piccante and I had good ole Spag Bol (or rather Spaghetti Alla Bolognese).

Friday – I was unsure as to who I was seeing at clinic and when one of the health care workers checked with the myeloma nurse, who was a bit exasperated (not with me) that I’d not managed to see a doctor on Thursday after making all the arrangements for a senior doctor to see me, it turned out our appointment was with one of the transplant doctors and the bone marrow transplant co-ordinator to discuss the prospect of an allogenic (donor) transplant.

We were in there an hour and 20 minutes, possibly because a big chunk was taken up with altered sensation talk.  Along with my right forearm the pad of my left thumb and the right side of my chin now feel odd and I still have, intermittently, the pain in the crown of my head.  Straight after the appointment I got some free x-rays on my head and neck (skull and cervical spine to the more technical amongst us) and Dr S did a request for some MRIs.

When we got to the transplant bit Dr S explained that the role of allogenic transplant in myeloma has no hard and fast rules.  It is neither proven or unproven as THE way to go however, given the way things had gone so far for me, without giving a donor transplant a whirl the prognosis was very poor (he did also say really poor at one point and hey, overall both are better separately than together – really very poor).

Last appointment the Prof had mentioned another autologus (from me) transplant and then a mini allo (from some random stranger) transplant.  However Dr S said that another auto couldn’t really be considered for two reasons – he could almost guarantee I wouldn’t produce any cells to harvest (we had trouble last time and there’d been the subsequent melphalan for the transplant last year) and with the plasma content of the bone marrow trephine being 80%-85% (the Prof must have rounded up to 90%) that was a whole bunch of myeloma cells to potentially give back.

As my paraprotein is zero but my bone marrow plasma cell percentage is 85% and my free lite chains (not something I’ve paid any attention to in the past) haven’t been measured since February Dr S thought it worthwhile to count them now in case the myeloma has mutated and stopped producing a full measureable monoclonal protein – the full one is made up of a heavy chain (IGa in my case) and a light chain (mine is Lambda).  In fully secretary myeloma the full proteins are measured and known as paraprotein, M-spike, PP, M-protein.

In some people however only the light chain is produced and having no accompanying heavy chain to bond with it is not measurable using the regular test that picks up only full monoclonal proteins.  However since the advent of a way to measure these free (unattached and possibly flirty) chains the number of patients that show up as truly non-secretary (eg, not measurable through blood or urine) has dropped to 1% or 2%.  Everyone, with or without myeloma, produces excess free lite chains (maybe in case one of the full proteins gets divorced) but an inordinate amount in someone with myeloma would be indicative of active disease.  So I had blood taken to check out the number of loose lite chains cruising around without a partner.

I also had a blood sample taken for tissue typing (HLA).  Apparently there are 10 potential pairs to match – 10 is good, nine is okay, eight is do-able but not ideal, seven and below are non starters.

The other thing that would need to be looked at is reducing the 85% plasma cell content before transplant.  It may, hopefully, be sitting there inactive at the moment (freelite test pending) but to transplant donor cells at that percentage would be like giving the myeloma cells a chance to claim permanent squatters’ rights before the donor cells have fully moved all their stuff in and made themselves at home.

With regard to the transplant itself if we KISS (Keep It Simple Stupid) the figures are – 1/3 kark it as a result of the transplant or complications arising there from, 1/3 relapse and ultimately pop off because of the myeloma and 1/3 go on to have a long remission.

As we needed to go to my Auntie Ann’s on Friday if I were to see her this weekend (she was going to London Saturday/Sunday to watch Saints vs Harlequins) I didn’t get my lunch out – well not fully, we ended up with our first ever Subway Subs eaten in just opposite the hospital.

Saturday – Letter arrived telling me that I had an appointment on Friday!  I had a slight temp in the morning of 37.3 along with a bit of a headache.  Mid afternoon a friend with myeloma had rang to say there was a local show in aid of Myeloma UK by a young lady in memory of her mum, he’d just seen details of it in the local paper and him and his wife were going.  About an hour later, by which time I’d persuaded a reluctant B that he’d really like to go, I started feeling a bit ropy and my temp went up to 37.8.  So needless to say we didn’t make it to the show – not least because I didn’t want to share anything I may have acquired, because I’m mean like that.  I felt somewhat better after a cool bath and some painkillers, played a computer game with B and then started feeling ropy again and had a kip – very little knitting got done, the volume of production of which acts as a wellness barometer.

Sunday – Temperature this morning 37.3, after paracetemol 36.9, generally felt okay, tired, slightly headachy but okay.  Then at 10:00, the time I’d been instructed to wake B up, I started feeling decidedly off, got up from the desk to wake B and felt sick.  Shortly after, after getting B to encourage Bud to get on the bed with him so I had the bathroom to myself I parted company with the few things I’d consumed in the two hours and a bit hours I’d been up.  How is it though that one and a half cups of coffee, curcumin tablets, a calichew tablet and probably one digestive biscuit (I got two out but shared with Bud) assume the size of a family bucket from KFC when they make an encore appearance?

Speaking of Bud, he’s been having ear drops administered since Wednesday, reluctantly mind but not too badly.  This morning, as he got all excited in a ‘Please don’t stick anything else in my ear – I’ll be really, really good if you don’t’ way and after enticing him in with the treat he would get once they were in – I PUT THEM IN THE WRONG EAR!

We’re supposed to be going to a friend’s for tea tonight so I’m going to take it super easy this afternoon as I HATE to miss out on anything particularly if the missing out is myeloma related. Mind you, if push comes to shove I’m sure she’ll let me lie down on her settee – I mean, it wouldn’t be the first time and it gets me out of even contemplating cooking.