Tag Archives: allogenic transplant

Clinics and chips & egg

B and I sat in the consultation room on Friday and the Prof walked in, sighed and touched B’s arm as he was passing and I thought ‘We’re screwed!’ – okay, I lie and you know I’m always completely honest with you I actually thought ‘We’re f*&%@d!’.

And then the Prof threw me by asking about that conversation with the young doctor a week ago – but I guess that’s why he’s paid the big bucks to keep one step ahead of the patients and keep us on our toes.  We decided I didn’t need to continually be told it was serious and when I said that I’d thought it was maybe because I was generally happy and that the young doc had thought I didn’t have a full grasp on the situation the Prof said that just showed that I was coping well.  B pointed out that we’d known it was serious from the start and the Prof said yes, but that was before any treatment had been started and it was now seriouser.  At the start there was the possibility of squashing it and even when it relapsed in February but now it was more a case of keeping it under control for as long as possible whilst keeping a good quality of life –  as obviously the past few weeks hadn’t exactly been top form.

So once again I have to be different and although myeloma is an individual disease mine is being particularly individual.  It would appear that my paraprotein level doesn’t go that high which is deceptive because of the large plasma cell content of the bone marrow.

Revlimid is known to affect kidneys and it would appear that the 25mg dose did that.  My kidney function had been good for the last year, as evidenced by the black figures on the Prof’s screen, and then from the first tablet of Revlimid the figures went red.  Things seem to be on a more even keel on the 10mg dose.  The myeloma suppression of the bone marrow (and therefore blood production) seems to have eased up as my blood counts are better (I only got my platelets count which had gone from 33 whilst in hospital to 130 – WOW – minimum normal range 150).  I asked if things really settled down with regard to kidney function whether the dose could be increased and that is a possibility.

So we know that the transplant doc had said that the best option would be a donor transplant, and indeed without one the prognosis was really poor, but that the plasma cell content of the bone marrow would need to be reduced prior to it and basically at this dose I don’t think the Prof was confident that it would reduce it enough/significantly – this was reading between the lines he didn’t actually state it in as many words.

I had six days worth of Revlimid left and then a week off.  The Prof said he’d see me at the Day Unit on 2 November as the clinic for the following Friday would be really busy as he was off the week before.  I asked whether I needed to take the Fragmin injections on the week off and although Revlimid is theoretically less likely to cause thrombosis than Thalidomide it was advisable so I wasn’t coming back blaming the Prof if I got a clot.  Oh, and a fellow patient and his wife, who I met the day I was kept in the Royal last, gave me a tip that he’d been given by a nurse – pop an ice cube on the area you intend to inject and you don’t feel a thing.  Not only this I’ve found that it doesn’t leave a bruise either.

We’ll look at getting a further bone marrow biopsy late November/December to check the plasma content then.

Good news with the MRI – nothing new – C7 shows 50% compression but everything is fine with the spinal cord.  I also saw the results on the screen and missed the opportunity to ask if the ‘benign sinus disease’ referred to was actually snot.

Overall Friday I felt really good.  B commented to me and the Prof about the sprightly-ness with which I got out of the car.  And I had a shower Friday night!  What the heck has this got to do with the price of fish I hear you ask.  Well when I’m feeling tired or in need of clearing my mind I CRAVE a bath – I generally nod off risking dunking the book I’m reading but I feel better for it yet Friday there I was in the shower and I realised that not only did I feel better physically but I felt better generally for seeing the Prof too.

AND I popped the cushion covers back on the cushions after over a week of them being naked – it’s a big job as they are sewn shut – I may have mentioned this before – which seemed like such a good idea at the time I made them instead of fiddling about with button holes.  DOUBLE AND we had egg and crinkly chips (fries) when we got home Friday as my appetite is generally getting better (and this is what I felt like) although I have lost 3kg (6.6 lbs) over the past weeks so I’m in no rush to put that back on unless it’s muscle – I wonder if Bud could spot me for a set of bench presses!  Buddddddddy, come ‘ere!

WANTED – Stem Cells for Stacy

I copied and pasted this information about Stacy from the MinnesotaMyeloma blog from Karen’s blog (sigh, I’m getting so lazy).  Please feel free to copy this to your own blog, Facebook page, etc. Stacy is in her 30s with two little girls, close to WCK’s age (Karen’s really funny daughter and just in case you come here for my craftiness or shining wit – leave that sh and w where they are, thank you – WCK stands for World’s Cutest Kid).

Stacy Needs Your Stem Cells

Stacy is a young Minnesota mother with myeloma. She has tried just about every treatment, including an autologous transplant, but her aggressive myeloma will not relent. She has a Caring Bridge site.Stacy’s doctors want to do an allogeneic transplant, hoping that stem cells from another person, a donor, will give her a brand new immune system which will view her myeloma cells as invaders and will destroy them. This is called the “graft versus myeloma effect” and can sometimes provide a long-term remission.

So far, though, the doctors have found no matching donor.

The web site www.marrow.org* gives guidance for registering, and information about the actual process of donating stem cells.

From the web site, some of the donor requirements:

  • Age 18 to 60.
  • Good health, including NO CANCER.
We who have myeloma are not eligible, but many of our caregivers, relatives, and friends may be.According to the web site, the registration procedure involves a swab of cheek cells, to be done at home. Once registered, a person could be “matched” to anyone with a need. If an opportunity to donate is presented, a person can accept or decline it.

*In the UK the equivalent service is The British Bone Marrow Registry which is a division of NHS Blood and Transplant and which forms part of the International Donor Register.  There is also Anthony Nolan – I tell you this because I am always completely honest with you and therefore I feel the need to say that if you register with the NHS they require you to be a blood donor too (you can do it as a one off) and they take a blood sample for the register at the time of donating – a kind of two for one deal!  
Having donated my own stem cells (to myself) I can confirm that the procedure is generally untraumatic (I managed to spill a cup of  cool tea over my lap) and relatively painless.  Stem cell collection from the blood is just the same as giving blood except the stem cells are extracted and then you get the blood back after it’s had a short trip through a machine – not long enough for it to send you a postcard, bring you a holiday gift or even buy a ‘Kiss me quick’ hat.