• 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.


    Tags: , , , , , ,

  • August 14, 2016 /  Myeloma

    Hi, I realised I haven’t posted in a while. There’s not a lot to update you on.

    After my levels dropped to normal they decided to lower my Revlimid dose from 25 to 15 mg. My light chains then rose slightly to just above normal, but have remained stable there for a couple of tests, so we’re hanging on to see if they will stay there. I don’t really want to go back up to 25, although tbh I haven’t noticed any major difference in how I feel coming down by 10.

    I have just restarted my vaccination schedule and in fact am sitting here typing with sore arms, feeling a bit woozy from 3 hefty jabs.

    I discovered that information about a test for the speed of bowel transit I had done last autumn had not got through properly to anyone, including me – it was done by a locum at the hospital who subsequently left. Gastroenterology sorted it out really quickly. My transit time was incredibly quick – I have the runs and cramps every morning. I have just started some binding medicine called Questran and today – no runs! Nothing in fact! It does taste a bit yucky and I’m a bit worried about getting constipated, but it should help with the absorption of food and nutrients. I’ve lost a bit of weight recently, so hopefully that will stabilise.

    This autumn, if my health is OK, I’m hoping to learn how to self-administer my immunoglobulin. The usual way is via a couple of pumps you insert into the stomach area, but now there is a slow (10 min) injection you can do. I’ll have to get trained at Leicester, but then I’d do it every other day or two, probably in the evening. It would mean that I get a more equal dose over time. Atm I have it IV every three weeks so my levels go high and then trough. I’m very glad to have it, as I’m sure it’s prevented infections.

    I’m almost weaned off citalopram now – I was put on it when I had my transplant, when one of the drugs seemed to make me a bit weird. It has various interactions with other drugs I take, so I decided to come off it, but took it very slowly. Just taking a very small dose on alternate days and hope to be right off it in the next couple of weeks.

    I’m still very tired and have various irritating side effects. I was really hoping to feel a bit better, but as my consultants say, I have been very heavily pretreated now and Revlimid is strong. I’m trying to just go with the flow and rest when I need to. Bob has retired now and is helping a lot with lifts etc, so I don’t have to drive too much.

    Take care all of you with myeloma.


    Tags: , , ,

  • February 8, 2016 /  Myeloma

    I hope you all had a good Xmas. Ours was quiet. My daughter’s partner’s mother, who was a good friend, died the Sunday before, from lung cancer and brain tumours. She survived much longer than predicted and we had numerous excursions to the hospital together, and I would call in after my appointments. She died peacefully at home with her two adult children with her. She refused to have a funeral or wake, so the family will scatter her ashes up north where she grew up.

    Not really had much of medical importance to report on recently, but I’ll be off to my consultant tomorrow, so I’ll update on that if anything significant happens.

    I am still on Revlimid (top dose 25mg) and my disease levels are still low (kappa light chains hover around 40ish). I had my first infusion of donor cells to ‘top me up’ just before Xmas. It was a tiny amount and I don’t seem to have had any graft versus host disease, although it’s a bit difficult to know as my digestive problems have worsened and my mouth is very sore, but that could be due to my other treatment.

    I’ll be having a test in a few weeks to see if my percentage of donor cells has risen and then they will decide if I need another infusion, which will be bigger.

    It was also decided to take me off steroids, which in the long term will be great, but I have been reducing pretty quickly and am really struggling with massive fatigue, aching and low moods. If things get too bad I’ll ask to do the last reductions over a longer period of time.

    It will be interesting to see how I am on just the Revlimid and the associated meds like aciclovir etc. I do have bad sweating sometimes, especially at night, which I think is the Revlimid, and sometimes I am having the runs badly.

    I also saw the immunologist at Leicester – poor guy is completely overworked, but he was interesting and gave me more background on my immune system. He’s keeping me on the immunoglobulin IV for the moment and I see him again in July.

    I’ve been really plagued with a dry and painful mouth and am trying various things from the chemist, but the last stuff irritated my throat. It is surprising how annoying it is. I also get catarrh/rhinitis/nasal drip etc, but am used to it really.

    Apologies if this sounds a bit whingy. Coming off steroids does make me low and irritable, but I’m trying to just remind myself it’s the drugs!

    Tags: , , , , ,

  • February 18, 2015 /  Myeloma

    Well quite a while since I last wrote. I managed to be at home for Xmas – Bob did both the cake – delicious- and the Xmas dinner (I just did the sprouts!), and the kids and their partners had Xmas dinner with the other parents and then came for an orgy of present swapping and a buffet in the evening.

    I have started my immunoglobulin IV at Leicester General – got hopelessly lost on our first appt! They up the delivery rate very slowly and I was told a lady had, very unusually, had a bad reaction very recently, which had obviously frightened everyone. It probably wasn’t the best time to tell me that, as I spent the first session wondering if I was suddenly going to keel over, but luckily I didn’t. I didn’t seem to have any side effects except being rather more tired than usual, though tiredness is a default state with me, especially after long trips. I’ve had 2 sessions so far.

    Once I am fully ‘loaded’ it looks as if I might be able to have my IV at Northampton every three weeks, which will be great, as my my haem consultant appts are being moved to N’ton too. So I will only need to travel to Leicester if I am ill, or if I have to have procedures.

    My own immune system has apparently shown some signs of life. I have been taken off my immunosuppressant (Ciclosporin) and am down to 2 mg of steroids a day. However, my paraproteins have shown a rise. This does not necessarily mean a return of the disease, but they need to keep an eye on them. I should be having a free light chain test next visit so we’ll get a better idea.

    I was put on Azithromycin (antibiotic) before I started my IV, and didn’t like it much. I happened to mention that my hearing felt as if it was that sensation you get before they pop, and she immediately took me off them, so watch out for that if you are prescribed them. You can become deaf. I’m now on a lowish dose of Amoxycillin.

    Generally I’m not too bad. I still suffer tiredness. This is partly as I weaned myself slowly off zopiclone, and now can’t sleep until about 2am. My haem consultant warned me against the ‘push too hard and then collapse’ syndrome which happens with lots of patients. I walk every day and try to keep active. Since Xmas I have gradually developed very achy muscles and joints. It started with my knees and now affects much of my body, but it makes me limp sometimes, as my calves are quite bad. I’ve had to take paracetamol a few times. It’s worse in the early morning and evening. I gather transplant GVHD can cause this, and I have been coming down off the immunosuppressants, so it could be that. Will be raising it with my consultant next week.

    I also have a sore mouth, lips and tongue and nothing seems to work on them. I get a red and sometimes itchy rash on my neck and my skin sometimes flakes very badly. However, these are all relatively minor, though they do make me grumble!

    My PEG should be coming out in the next few weeks. I am eating more, though have lost a bit of weight. After 40 years of not eating meat (do eat fish) I have tried my first bit of meat – a rasher of bacon. My consultant said I needed more protein to build my muscles and I kept having weird dreams about getting to the serving area in a canteen and finding they had run out of food!!! I can’t eat much cheese since my gallbladder came out, I find nuts indigestible, beans too windy and there is only so much fish and egg you can eat. My digestive system obviously wasn’t sure about the bacon, but I will keep trying. There are meats like chicken I just don’t want. I don’t need much as we all eat too much protein anyway. I was quite surprised that the bacon, which was supposed to be good quality, was not as tasty as I remembered.

    The other problem I have is memory loss and lack of concentration. Both my long and short term memory seem very bad, though short term is worst. I can still do a fair number of University Challenge questions, but am hopeless at programmes like Only Connect and Countdown. Not that I was brilliant before! I can’t do the Guardian quick crossword and have really struggled with cryptics. Names are beyond me, and I have many ‘senior’ moments. Bob and I would be stuck without the ‘pause’ on the TV as he’s always struggled with plots, not being a novel reader, and now I can’t do them either. In fact he’s better then me now. Also, my written work is full of typos and I have forgotten some of my spellings, so forgive my mistakes! Just hope the brain cells will return.

    To finish with – I was very sorry to find out that Mike Marqusee, the writer and poet, who had MM too, died recently. His poems about having MM in his collection ‘Street Music’ are well worth reading by patients, carers and medical staff. http://www.mikemarqusee.com/



    Tags: ,