• 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: , , ,

  • May 14, 2016 /  Myeloma

    Sorry it’s been a while, though nothing much of significance has happened. After my DLI I became 100% donor cells. My disease levels (kappa in the 20s) are just above normal, and have been stable for some time and for those who understand, my kappa/lambda ratio is about normal too – which it hasn’t been for years. I am still on Revlimid, but they will try reducing the dose from 25mg to 15mg after this cycle. My Leicester consultant doesn’t want me to have another DLI as it’s not necessary atm and she’s worried about graft versus host disease which can be nasty. She’d also like me to be fit in case they want to try me on any new treatment in the future.

    The downside has been side effects of coming off steroids, which, along with the Revlimid, have knocked me sideways. There has been some disagreement over whether I should be treated with hydrocortisone, but after another test, but the endochronologist at N’ton said I’d only need extra if I was under stress – ie have an infection. Whether this is ok I don’t know, but I am still very tired and my joints ache badly. I guess my cortisol levels will slowly rise back to near normal – let’s just hope it doesn’t take too long.

    So – on balance the important thing – my disease levels – are most important, and as everyone on treatment knows, I just have to put up with the effects of treatment to keep them there. I’m trying to get exercise as much as possible, but to rest when I need to.

    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: , , , , ,

  • September 18, 2015 /  Myeloma

    Just a quick update. Unfortunately when I saw my consultant last week, my levels, which were 2 months old, had risen (Kappa 465). My ratio was stupidly high as my lambdas were, as always, very low, but we don’t take so much notice of them.

    My Leicester consultant has passed me back to Angela, my Northampton one, while she handles the next phase of treatment. Basically this involves me going back on Revlimid and Dex (steroids) to try and get my levels down. Then, if that works, I will go back to Leicester to have one or more donor plasma injections. I wasn’t 100% donor cells, which can be more protective, so this could ‘bump’ me up.

    There are possible issues in that they could cause graft versus host disease, although that can also fight the disease! Bit of a balance there!

    I started the new regime yesterday – 10 mg of Revlimid once a day for 21 days and a week rest. 40mg dex once a week. Already fingers are swelling up, but on the other hand I feel fairly active! Expecting the usual puffy face. I tolerated this regime well last time, and the Revlimid is at a low dose for the moment (I was on 25 last time). However, having had the transplant, the side effects may be different.

    Bit of a blow, but having to just get on with it. It’s complicated by the fact that the Cancer Fund, which deals with rarer conditions and drugs, is being cut for the second time. As I’m on Revlimid, which is being cut for some people, I should continue to get it, but if it doesn’t work, then one of the other possible drugs won’t be available. There are other drugs, but hopefully the Revlimid will work. I have been on it before, and came out of remission after about 18 months or so, so hopefully I haven’t built up a resistance to it.

    I’m also having a colonoscopy soon to check out my polyps and also to make sure I haven’t got GVHD in my bowels, as I’ve been having some digestive issues. Can’t wait!!

    Not much else to report. I’ll try to post a bit more regularly on how it’s going.

    Tags: , , ,

  • February 9, 2013 /  Myeloma

    Many apologies for not updating recently. There are good reasons for it. We became aware that my light chain levels had started to rise last year – in fact before my last blog. Apart from Bob I didn’t want to tell anyone as it could have been temporary and the kids were going through all sorts of changes like job changes, moves etc. As time went on the levels kept rising and it was obvious that Revlimid was no longer effective. We had lowered my steroid dose and tried putting it up again, but to no avail. So in (I think) August I came off Revlimid. It’s a bit difficult to know exactly why this relapse has happened, but I do have some suspicions that my bad chest infection last year plus the c.diff might have been a tipping point as the levels began rising shortly after. However, who knows – it might have happened anyway.

    Anyway, I had to slowly reduce the steroid dose and am now off it. I had no idea how much that would affect me and the withdrawal symptoms are still with me. I have been told it can take months for your body to relearn to produce its own natural steroids. I also came off warfarin after a 6 week gap and last appointment have also ditched the aciclovir (prevents shingles) and fluconozole (prevents thrush). I am still taking me Adcal (Vit D and Calcium), and Gabapentin (helps with the peripheral neuropathy, though since coming off steroids it’s a bit worse). I’ve also swopped Ranitidine for Omeprazole, depsite my worries about it making me more vulnerable to C.diff, as I have terrible acid atm, despite being on fewer drugs.

    At the moment I am having a break between treatments. My light chains continued to rise through to December though not too fast.  But Jan’s went back to September’s level. We were all a bit puzzled by that. But it is a mysterious disease!

    My next treatment will be Velcade. I had put off telling the kids until I started on it, but as everything has dragged on I have told them now, and so can put it on my blog. I should have had Velcade before Revlimid – that’s how the funding stream usually works. But as it can cause peripheral neuropathy or make it worse I went on Revlimid instead. However, it has been discovered that having it delivered subcutaneously instead of intravenously reduces the possibility of PN, so I can try it now. Velcade is a nuisance in that you have to go to the hospital once or twice a week for two weeks and then have 10 days off. Revlimid was pills and a once a month appointment. But tbh there is no alternative. It doesn’t work for everyone, but I think you get an initial 4 rounds before there’s a decision about whether to continue.

    If it doesn’t work then it is possible to try combinations of drugs, or I could be referred to the Royal Marsden which is a key myeloma treatment centre and where they do clinical trials. A key drug just passed by the FDA in the USA may be licensed over here in the next year or so as well and other drugs are coming on line too, so hopefully I can keep going on treatments for a while yet. Whether they would give me another stem cell transplant I don’t know, but I have one lot of stem cells left to use as well.

    I probably won’t write again until I start Velcade as there won’t be much to report. Hope you all have a good year!

    Tags: , ,

  • July 16, 2012 /  Myeloma

    I’ve now been on Revlimid for two years! Still hard going, but keeping me in remission. I managed to get over my c.diff though it took an age to get my digestion back to normal.

    I was recently taken off my bone-strengthening Zometa injections as if you are on them long term there is a (small) possibility of a serious jaw condition developing and as I’m in remission the consultant decided it might be safer. I was put on Alendronic Acid – a large tablet once a week. Unfortunately it can have awful side effects for some people- especially in terms of indigestion and attacking mucus membranes, as well as the usual collection of other effects. I’ve had three pills now and my throat and oesophagus are burning and I have developed bad diarrhoea, partly also as a result of taking Gavescon, which doesn’t really agree with me, to help with the symptoms. I am definitely not taking it this week – we need to look at alternatives. I wonder if my old Bonefos tablets might be better. They did give me indigestion, but not like this.

    However, we had a good few days in Bruges some weeks back – we’d been before but took my son and his wife with us this time. I was a bit worried that I wouldn’t be able to eat properly, but I was fine and managed to walk quite long distances and eat quite a bit! Mind, I did have rather a large number of eggs which did necessitate a few days of Lactulose when we came home! Before we went away I had been having problems with pain in my ribs and back on my right side, but this subsided with all the exercise. I am waiting for x-ray results but the pains do seem more muscular than bone related – though of course myeloma can cause these pains if the bones are affected. I sleep propped up because of the acid reflux and I think this causes some of the aches and pains.

    Bob and I are off to Guernsey for 5 or 6 nights at the end of July. The annoying thing is the cost of travel insurance. Bob’s is very cheap even with the specialist company I’m using, but our total for this holiday coming up is around £108, partly as Guernsey is counted as part of Europe, not the UK. Also, you have to declare everything for the last 2 years, and for me that has included removal of my gallbladder, shingles, c.diff, chest infection etc. I can probably understand that I am a bit more of a risk, but the costs can be stupidly high for people who have been treated for conditions like breast cancer and are in remission and not likely to suddenly fall ill as I might.

    Other good news has been my son getting a new job – still on a low salary, but with better promotion prospects, and my daughter getting a First at Uni. Now she has to get a job!

    So things are ticking along – hoping for better health over the summer so we can enjoy our holiday – and of course better weather too!! I hope you all have a good holiday as well.

    Tags: ,

  • November 26, 2011 /  Myeloma

    Once again apologies for not updating recently. Only thought about it when I got a spam comment! Not going too badly, except I have a cold and cough – first for such a long time, so I have been lucky. Just taking it very easy atm. On my 17th round of treatment now. We are sticking with the 20mg of steroids (half the original dose), but it hasn’t made a huge difference to the side effects. I’ll be having a nerve ending test soon – my peripheral neuropathy seems a little worse – hope it isn’t as it may mean I can’t continue with the Revlimid, which has been working well. Some side effects are somewhat embarrassing – quite a bit of excess body hair from the steroids – especially fine hair on my face and dark on the back of my hands (or maybe I am turning into a werewolf!!). Also terrible wind! My face is a bit puffy so my eyes look a bit strange (or do to me anyway) and I am very red in the face much of the time. I am trying to take it a bit more slowly especially in terms of union work as I have been pretty tired recently. But generally plugging along!

    Tags: , , ,

  • September 10, 2011 /  Myeloma

    Hi, another quick update – I really will get round to a longer one soon! On my 14th round of meds. Research shows that being on the full dose of Revlimid for at least 12 months is good at extending remission, so let’s hope! However, it has become pretty wearing. I wasn’t able to see my consultant at my last appointment, so haven’t further reduced my steroids which I’d like to do if the results remain good next time. I haven’t really noticed a huge difference with halving the dose, which has been a bit disappointing, but maybe another drop will help. I do feel a bit more nauseous as steroids help with that and reducing them seems to have caused that problem, but the occasional anti-sickness tablet helps. I have been very lucky over the last years of treatment in not experiencing sickness due to chemo – nausea sometime, especially during the transplant, but nothing worse. I am trying hard to exercise more to make my muscles stronger – mainly walking or on a cross-trainer. Also gardening!!

    Doing my Trade Union work as always – please all could readers of my blog campaign against the NHS ‘Reform’ which will be devastating for patients and staff. Please hassle your MPs and now the Peers – you can adopt a Peer http://www.goingtowork.org.uk/peers/ to write to. We had a well attended candlelit vigil last night outside the hospital. It’s cutting £30 million in the next two years, involving 300 redundancies and probably ward and operating theatre closures.

    Just a note on people commenting on my blog – I won’t respond to anything which might be spam – if you have a question for me which you don’t want to put out as a comment you can email me on sarah@edweb.co.uk, but I will only respond if the email appears genuine and relates to issues about myeloma.

    Have a good autumn everyone and let’s hope the weather improves!

    Tags: , , ,

  • September 15, 2010 /  Uncategorized

    I have now completed the first round of three weeks of Revlimid and then a week off. Just started the next round. No indication yet of whether it’s working as it can take quite a while. My first blood test has just gone off the London and could take at least a couple of weeks to return.

    It was a bit of a shock to the system, and it brought it home to me that my health is gradually deteriorating.I was surprised how quickly the side effects knocked me sideways.

    For fellow myeloma sufferers the details are: One Revlimid a day, 40 mg steroids once a week, Warfarin to prevent DVT, and the usual clutch of anti fungals, Bonefos etc. Also lactulose for constipation, calcium as my levels went down.

    Having just had a week off Revlimid, I feel it’s the steroids that affect me most – the shakes, especially in my hands, muscle weakness and twingeing (also sometimes internally), bad withdrawal from the third day after, low mood, very tired, swollen hands etc. Not sure about the Revlimid – they do make you tired too and my immune system is going down. I had a very few odd red spots but not the dreaded rash that some people have.  I did have some mouth problems after having bitten my cheek and then finding my whole mouth got sore, but have just used Difflam to get rid of it (ruins your taste buds!).  I find I have to nap during steroid withdrawal.

    I am trying to eat well (am hungry with the steroids but do need to put on some weight after my low fat diet) and am trying to go on my cross-trainer everyday. Also using a circulation booster on my feet – they help a little with peripheral neuropathy and prevent DVT in my legs.

    I still haven’t got my Warfarin blood test levels up to where they are needed – maybe due to my diet with lots of green veg! But they are gradually increasing the dose.

    So toodling along and just getting used to planning my week around the pill cycles. I make a to-do list for Tue/Wed as the steroids mean I can get quite a bit done – today was very successful! Yesterday I did the hospital in the morning and a demo against the cuts in the afternoon! Then a visit from a friend later! Yes I am knackered but all the union stuff keeps my brain working.At the end of every day I write down my meds and how I feel, which helps when you think you feel bad on eg day 4 you can look back and see you did the previous week and not to worry. Also helps at appointments. But also I write at least 4 positive things down too!

    Many thanks for visitors, postcards, emails and comments on my blog. All really helps. Visitors very welcome if you are healthy!

    Will try and update again soon.

    Tags: , , , , , ,