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.

10 responses to “Paraproteins should be lined up and shot

  1. I’m simply at a loss when there’s this much information and this many numbers in one of your posts. They’re understandable, but what do I say about them? I think about you every single day, and hope that, sometime soon, the only counts you’ll have to keep up with involve yarn stitches.

  2. I’m having my second blub of the day. I’d like to copy Amanda and use lots of bad words, but wouldn’t want to offend anyone. The bearing up seems to be bearing down.
    I read that Sean is on doxorubicin too (I think), if I remember correctly it’s red!!! If you are having Velcade make sure it’s Mondays and Thursdays, that or make sure June 14th is your week off. We need you to be a witness.

  3. And get a bloody timpanic( however it is spelt), cause your ears can’t chew!
    If your at home, then we are comin to visit….. not as guests but as visitors….we can put the kettle on, chat then bugger off if that’s ok? 2 1/2 crochet hook?

  4. Here’s hoping this combo smacks those numbers into submission and that the 2 B’s are giving you lots of TLC. And
    crazy Dex stories? There are a few folks on the ACOR listserv who said they had psychotic episodes and wound up in hospital psychiatric wards from it. When Tim was put on very high dose Dex, the nurse warned that they had an elderly man
    attack his neighbor with a shovel while on it. I thought “great, now I’ve gotta hide the gardening tools too!”

  5. It’s not that there is too much information. It just that there are too many paraproteins running around causing problems and I am aiming the Intending Machine right at them now 24/7 to blast them to kingdom come!

  6. Shit that is a bit of a leap in pps! I was on velcade and doxarubicin as part of a trial last year and I cant remember it causung too many problems watch out for feeling shattered on your drug free week though

  7. Sorry Paula, I can’t offer you any myeloma wisdom (as you know we’re just going through it for the first time with my b-i-l), but can I just say that I agree whole heartedly with the title of your post and with KSD about hoping the only numbers you need to count are your stitches for whatever you’re knitting or crocheting.

  8. I think doctors should (sometimes) try the treatments they prescribe so casually…I remember my own hematologist talking about BMBs as though they were a walk in the park (here in Italy, you don’t even get painkillers…)…I was taken aback and said nothing (very unlike me! ;-)), but the next time she does that, I am going to suggest she have a BMB, herself. Then we’ll talk! In the same line of reasoning, I think your docs need to try Dex for a bit…Eh!
    I’m with Bud…happy, that is, to know that you are at home…Hey, get him to grab your temperature, throw it around the room, stomp on it and chew it up! 🙂

  9. So happy you’re back home with your 2B’s. Vern got a CR from Doxil/Velcade … hoping you’ll see your numbers react to it positively, too.

  10. Sorry to hear that you paraprotein is up, but hope it will soon be slammed
    into submission by the Velcade and doxil. Thinking of you…

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