Tag Archives: paraprotein

Woo foo

A few appointments ago when we had a woo hoo and a couple of WTFs Roo commented it was more of woo foo, so let’s see how today’s appointment went on the woo hoo/foo-omitor.  Oh, and Chris accompanied me whilst B slept it up at home.

Hug each off one of the health care assistants – woo hoo

Prof said I was very intelligent – WOO HOO (Chris restrained herself from commenting that I was a real smart arse)

Prof said he was perplexed – hint of foo

Paraprotein in blood not detectable – woo hoo

Cytogenetic results not in – mmm as I shoulder shrug – as in not that important in the scheme of things…

Plasma cell level from bone marrow sample – 90% foo foo foo foo foo foo foo

Prof showed me the computer screen to show he wasn’t getting confused at his age after we had a déjà vu moment of conversation from our last appointment but in reversed roles…

Prof: ‘It’s 90%.’

Me:  ’90!’

Prof: ’90.’

Me: ‘Hahahahahahahahahahahahahaha!’ Okay, well obviously not that bit, the Prof didn’t laugh last time.

Chris said later that she thought I was possibly the only myeloma patient he saw who laughed at such news but as I’ve said before being miserable doesn’t cure myeloma – correct me if I’m wrong.

So my monoclonal protein level as at 29 July is not detectable yet the plasma cell content of my bone marrow as at 5 July is 90%.  As I explained to B the sample could theoretically have hit a pocket of plasma cells and the rest of my marrow could be as clean as a whistle but that still left a pocket of not 10%, not 20% but 90%!

Prof said that somehow there was a 90% content sitting there inactive – as shown by the still undetectable paraprotein level.

I asked if it was likely that if a bone marrow sample had been taken after my transplant it would have shown the same result and he said yes.

 So where do we go from here?  Another stem cell transplant using my own cells (autologus/autograft) followed by a mini one using donor cells (allogenic/allograft) was recommended.  We’ll discuss this at our next appointment which will be with the transplant doctor.

And a definite woo hoo was getting on the scales and being 2kg (4 lbs) lighter than six weeks ago – it looks like that extra walking is paying off.  Although after my sugar binge yesterday – 500ml of Dr Pepper and almost* the whole of a 200g bag of chewy sweets that might change.

* I forced some (one or two) on B and Bud so I couldn’t be accused of consuming the whole bag but even so B was heard to say ‘Have you eaten ALL those?’ – mind you I think he might have been talking to Bud.

WOO HOO!

We have a fully stuff flushable toilet! And the shower tray/enclosure didn’t have to come out to do it.  Unlike normal mornings when I get up before B comes to bed this morning of course B got in bed and I turned over for five more minutes while I came round only to hear a van pull up outside the house.  Doh!

The original installer of the shower tray and toilet (someone else did the bath and basin) no longer worked for the company.  The young chap this morning put a hole in the wall and fixed it through that.

The tilers were coming back to tile tomorrow but Bud and I got back from our walk to find they had knocked B up and were doing this…

and this…

However some of the plaster came off so a plumber has to come back in the morning to plaster.  Yes, they can do small areas, B queried it.  And the tilers will come back tomorrow afternoon to pop in the missing tiles and grout.  It was either this or next Tuesday.  Since the shower would obviously be unusable during this period we settled for tomorrow.

Having it finished tomorrow however provided us with a bit of a dilemma.  Cycle three starts tomorrow and includes a clinic appointment and it will be the first time ever that B hasn’t been with me to an actual see a doctor appointment. Obviously I saw the docs on my own during my surprise holiday in February and declined their offer of speaking to my family when things were pointing in the direction of the myeloma staging a comeback tour but I’m really disappointed and this really surprises me.

I was only saying to a fellow patient I met at the hospital but saw at the Blood Support Group on Tuesday night about B and the questions he asks and apparently it’s not just B, her husband does it too but it would appear that I like him being there anyway.

Oh, and the other thing is that at the last but one and two appointments B has asked about my paraprotein level and the last but one doctor said ‘What the hell lets measure it next time.  Its a little earlier than we would normally check so don’t put too much store by it but overall your blood counts are looking better and you feel well’ – bit of paraphrasing there.  So last time we went they took a sample for measuring and we, I mean, I find out tomorrow and the agreement between the doctor and myself was that if it had stayed the same or gone up it was B’s fault for asking so much – as he did last time we went.  Both the doctor and I explained that ‘Yes it was being ‘measured’ that day but WE would only find out the results in a week’.

Oh, oh and yet another thing – who am I going to go for a mocha and an Eccles cake with while we I wait and wait to be seen in the clinic – as some of us know it’s not so much a guaranteed appointment time as a raffle.  AND what about my Friday lunch out – ARGHHHHHHHHHHHHH!

AND last thing I promise – as it my week hasn’t been crappy enough (boom boom), wait I guess it’s actually been very uncrappy (thank goodness for medication related constipation) I had to speak to the mother in law today.  DOUBLE ARGHHHHHHHHHHHHH!


Paraproteins should be lined up and shot

Thank you for all your comments from yesterday I had just assumed you would be back especially since a lot of you are far, far away!  It is actually reassuring to know that other people did strange things. Nurses (the Myeloma Nurse and my acupuncturist) seem to readily acknowledge that steroids can be ‘horrendous’ but doctors seem to gloss over it.  After reading it a friend texted me that I needed to do what was best for me and the two B’s rather than what was easiest for the docs.

Anyhoo, Thursday afternoon I found out what my paraprotein level was.  I didn’t post it on Friday as I hadn’t told B and my sister in law occasionally stops by (if you’ve not seen it you need to go and look at Gills’ comment on Boxing Day Part I) and I didn’t want her to mention it to B if they spoke on the phone before I told him.

The docs had seemed pretty keen on discussing treatment options even though they were waiting the results of the bone marrow biopsy saying that they thought my temp spikes were not viral (or wiral according to the doc last week) but as a result of the myeloma cells being picked up as bad cells to be attacked (okay little bit of my interpretation back to one of them there to be sure I understood what he was saying).

So apparently my PP was quantified on Monday afternoon – I’d asked in the morning – and it was when I asked the Myeloma Nurse to explain what the lab had meant by the IGA band of 18 containing a chunk of PP that it came to light.  So from ‘registering but  not sufficiently to quantify’ from the blood tests of 31 December its gone to 15 on 14 February.

After I handed in the list of dex affects on Friday and having been told it was Velcade and dex or Velcade and nothing on Thursday I got offered Velcade and Doxorubicin on Friday because apparently Velcade works better as part of a duo.

I have to admit I haven’t done much today and intend to look things up tomorrow as it isn’t something I’ve heard of before.

My blood counts from Friday were

HB – 8.2

WBC – 3.2

Platelets – 83

My skeletal survey found one new area damage at C7 , which is up in the neck region.  Apparently its the one next to the most prominent one.  I need be aware of getting any pain from this region and say so at once.  There is no fracture so no need to do anything at the moment but there is some loosening so I need to maintain regular Zometa infusions (and I’d been started on calcium and Vit D earlier in the week) as we need to avoid spinal cord compression.

Thinking today would be all about sitting on the new settee with B and Bud watching films and knitting turned out to be incorrect.  I started to get cold and shiver when they were out walking and by the time they got back B needed to go and get a new thermometer as I was taking my temp and my teeth chattered and it broke – just as well the day’s of mercury thermometers are gone!  I suggested while B was going out anyway a fan would be good – apparently at this time of year you can’t get a fan for love nor money.  So after leaving at 15:20 he finally got home at 17:10 after collecting two from my sister in law, meanwhile the m-i-l had woke me up by ringing twice in the space of 5 minutes over something that surprisingly could have waited until Monday.  (I didn’t answer the phone but the ringing woke me!)  So when I took my temp when he got back it was 37.8 which narrowly avoided the 37.9 that I need to ring the ward about – with the way my temp was been over the past two weeks I told the nurse this would most likely mean I was never off the phone.

Bud was pleased to see me (and I was ecstatic to see him) but to be honest I’ve seen him  more pleased when I’ve been out for a couple of hours however, very shortly after I got home he did start eating his raw hide chew and running round with various toys, in fact he’s just shredding one on the landing at the moment – he’d not done either in the past two weeks.

Zeros ARE best!

Off we went to our Blood Clinic appointment today and as Ruth commented not so long ago – ‘Zeros are best’.  Okay may be not in relation to your bank balance or wages unless there is a lot of them and a one in front but certainly in relation to a your paraprotein (the cack produced instead of antibodies by the myeloma – hey I don’t claim to be a medical encyclopaedia)  – ‘zeros are best’.  I know I’ve read that the PP is not always the best indicator but from a psychological point – ‘zeros are best’.  Lovely big fat round zeros!  Well somewhere in the last 10 weeks it would appear that I’ve mislaid mine.  I don’t know where exactly, it could have fallen out of my pocket while reaching for poop scoop bags whilst walking Bud.  I realise now that may be that wasn’t such a good place to put it.  Or I could have inadvertently stuffed it into a Myeloma Buddy (thought I better state Myeloma there in case someone alerted PETA and they confiscated Bud). So if you’ve got a Buddy in the last 10 weeks that appears to have a funny zero shaped bulge I’d be grateful if you could extract it and send it back – I’ll gladly pay postage.

I only thought last night ‘I can’t take it for granted it’s going to be zero again, what if it’s not?’ and I thought back to myself ‘Well, the results are already sitting there on the computer unless worry can hack the system there’s no point fretting.’

So the PP isn’t a lovely zero however it also isn’t yet a number, not even a teeny tiny one.  It’s ‘not sufficiently detectable to quantify’.

Now apparently it’s not something the doc is concerned about.  It was a new, to us anyway, doctor but he seemed very reliable.  They ‘treat the patient as a whole and not the number’ and looking at my other figures there’s nothing to worry about.  And really at the moment I’m not THAT worried (note to self – remember I said that when I wake up first thing in the morning and have an appointment flashback).

My other results were

HB – 11.8

Platelets – 202 (okay yes I originally stated WBC as 202)

Neutrophils – oops. I didn’t write that down (4 seems to ring a bell but don’t quote me on it!)

IgA – 1.44

So looking at the whole picture – my back is easier, my wrist is about the same but doesn’t bother me as much because I’ve been taking regular pain medication (if it does get worse I can be referred to a rheumatologist) and generally I feel well.  Oh, and I liked this doctor so much and it had nothing at all to do with him saying it was ‘good to gain weight after SCT that’s what they like to see’!

And on enquiring it turns I have IgA Lambda.  Hey I know last minute Larry, but we initially had a consultant who was very ‘Just take the tablets’ old school, and then I went potty on the Dex, so we are a bit behind on relevant info but we’re getting there.  B’s still about two appointments behind me.  Last time he asked about the Zometa and this time about the IgA.  With this and turning up on the wrong day for appointments it’s no wonder they remember us.

After the appointment we went for Zometa (bone protection) where B regaled a chap in the waiting area with tales of my driving woes – turned out the chap had once been a driving instructor and fully sympathised with B!

We then went for lunch at the Tavern & Co Mexican – where I followed Sean Murray’s advice (point 9) and had the medicinal Nachos and the non medicinal Texan fries.

After lunch we went for a brief shufty round the shops where we saw a chair that was so comfy for me it was unbelievable as I can still get comfy on our settee for a short time and even then still get up and walk off like I’m 103.  The only thing, well things, were – it was quite expensive, it was reasonably unattractive, B didn’t find the complementary settee comfy, it wouldn’t go on its own with the current settee/decor.  B suggested we get it for my sewing room – We’re thinking about it!

We got home to find Bud had had a chew of the kitchen door frame again, I had applied more Deep Heat this morning and left the tube on a shelf.  When I applied some more to the door frame after we’d tidied up it turned out that the cream no longer distributes just from the correct distribution point but also from a large tooth hole half way along!

Oh, and we got a cheap camera!