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.

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8 responses to “Hiding from myeloma

  1. Oh, Paula… “hide” this weekend, you deserve it. Then KICK ASS this week, honey. Our thoughts are with you, baby!

  2. We’ll soon have an “A-level” in it all at this rate. I must keep studyin, cause I’m not completely sure whether i’ve been fishin or not x

  3. You will do well as you keep pushing through. Not to one up but to make you feel better, I started out with 97% plasma cells. So there is hope.
    I just posted food tips on my blog as the ladies having radiation with me are in despair over lack of appetite. I promised them I would give them some tips.
    This is a difficult time energy wise in the world so even if you were feeling tip top, there would be issues. May you have a great week!!!

  4. I think hiding once in a while is totally understandable. Hope you feel more yourself in the coming week. Now you’ve got me thinking of fish ‘n’ chips … and it’s only breakfast time … but I confess to not having a clue about fishing for a myeloma treatment. Hmm … off to google that one!

  5. Paula, earlier this year I had a similar set of numbers….my m-spike had been zero all of last year with only a trace protein from keeping me from complete response. Then in January my M-Spike shot up startling everyone…then the next month it was back to zero…..with the exact numbers that we had seen in prior months…..a true ‘blip’ on the graph….We wrote it off as just a bad sample that month…and now I am in complete response……We are happy that you are now back to zero M-spike and will continue to pray for you as you approach all the decisions about a ‘allo’ stem cell transplant. EZ

  6. I couldn’t say anything better than what Nan did!

  7. Doing the happy dance over here with that “not detectable” news.
    Very good indeed to get there in 2 cycles. Yippee!!!

  8. OK you have offically baffled me with science. Just as well I didn’t enter Mastermind with specialist subject MM as all of this Fishy business has gone right over my head. 90%? Really? I don’t understand how that number can be so high and the other so low. OMG I feel thick today. Sigh.

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