• February 3, 2017 /  Myeloma

    I didn’t realise how long it has been since I last wrote. Christmas was quiet but very good.

    My levels continues to rise. I did more Revlimid and my consultant added in the dreaded Dex at 40mg. But to no avail. We have decided that I should go on Pomalidomide. It’s the next iteration from Revlimid and you have it in the same way – pills for three weeks and a week off. Dex every week on the first day of my cycle. That’s why I’m up at 3.40 am writing this! I’m on my second week of Pom now, and haven’t noticed much difference. More fatigue perhaps and I’ve had to up my Questran to stop the runs returning. But I’ve also been put back on Zometa IV once a month for my bones and that requires Adcal/D3 – 4 more tablets a day, away from other meds. And also I’m having allpurinol (for uric acid) – it’s common to have at least a month’s worth. So these drugs may be partly the cause for the bad tummy and bowels. I’ve certainly had very bad acid reflux. My list of medicines is now truly impressive!

    Apart from the usual aches and pains I have had periods of bad cramps in hands and feet, which are quite unnerving – my thumb can suddenly lock for example. But I haven’t had them as badly more recently so I’m hoping it’s a temporary thing. Very well known side effect of Revlimid.

    So just a question of waiting for the next blood results which will be in a few weeks time. Hoping at the very least things may have stabilised, but one round won’t be enough to tell.

    I was hospitalised for one night as I complained of being a bit breathless. They didn’t hang around – Revlimid can cause blood clots. In and out of x-ray, CT scan, oxygen tests etc. Nothing. But I have discovered I am anaemic again, so hopefully they might do something about that. I had to go on Clexane injections (blood thinner) and what with that and my immunoglob injections 3 times a week, my stomach was very bruised. I tried it in my thighs and buttocks, but the size of the bruises was huge – still got them though I’ve been off Clexane for a couple of weeks.

    Went to Leicester to see my immunologist – saw a new member of staff who was lovely and very thorough. She gave me a ring when some blood tests came through and was very supportive. My Ig levels are normal, if a bit low end.

    So that’s about all. My brother had a successful bowel cancer op – 25 cms out, glued back together, all by keyhole, no stoma bag, no spread as far as they can see. He’s still in a bit of discomfort not surprisingly, especially as I guess his bowels have all been shuffled around a bit inside but he is recovering well.

    Oh yes, and I’ve done a genetic survey for bowel cancer – meant filling in lots of family details, which took ages to do. That goes off the Oxford and then I’ll get a talk to the geneticist at my local hospital. My GP suggested all that – he’s very good. Might help with understanding the probabilities of my kids getting it – they could then get tests when they were older.


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  • January 5, 2009 /  Myeloma

    Sorry it’s been so long since I last wrote and I know some people wondered whether I was OK. Mixture of tiredness, laziness and not much to report really. I am still at home, taking it very easy. Some days I don’t feel like doing much at all and other days I can do the odd thing or two. I’ve really had to take on board the tiredness I was warned about. It doesn’t mean I sleep much – I still get poor nights. I do nap sometimes. But it’s the general weakness and lethargy which frustrates me. Also, my digestive system has not really settled down at all, so I’m on the loo quite a bit and any roughage goes straight through. I still get acid reflux and my taste buds have not returned to normal. Generally boring diet. I am going to try really hard to exercise a bit each day – I can do 120 ‘pulls’ on the cross trainer very slowly but then I have to sit down for quite a while.

    My neutraphils are now 1.34 – nearing normal. My haemaglobin is low, but I will be taking folic acid. I should only need another week of Clexane injections for my clots. I am also off lots of medication now. I just hope I can avoid all the bugs going around.I had a bit of a chat recently with my consultant and apparently you have to wait a bit before you can assess what impact the transplant has had. I still have traces of paraprotein but they may decline further. Later I’ll have another bone marrow test. At the mo I’m really not thinking about it at all – I really do take it a day at a time. My brain has switched off thinking about things.

    I was pleased with myself yesterday as the family all went off on a long round trip to my in-laws. During the day I alternated resting and watching the old Colin Firth Pride and Prejudice series on some dire channel with lots of ad breaks, with doing bits and pieces. I must have done about 4 or 5 lots of washing. I also cooked dinner. Had to do it bit at a time, very slowly. Do potatoes, sit down. Do carrots, sit down. Mix gravy sit down etc. I was shattered by the time everyone got back and they dished up, but at least I felt I had accomplished something. Today I’ve paid for it by being very tired! Was a real effort to shower and go to the hospital.

    Not much else to say really. Everyone in the family getting back to work – I will have to think about how I get to hospital appointments. It’s about £20 round taxi trip, so I may register with the volunteer drivers scheme. Luckily it looks like I’ll only be going in twice a week normally.

    I have heaps of paperwork to do, so maybe I’ll start on that tomorrow. Will try to write again soon.

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