• 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.

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  • November 29, 2015 /  Myeloma

    Sorry there’s been a bit of a gap. I have been toodling along on my treatment – I’m up to 25 mg of Revlimid now. The good news is that my kappa levels are right down to around 33 – less than twice a normal level. I saw my Leicester consultant a few days ago. She wants to begin donor injections after Xmas. The idea is to start with a tiny amount – about 5ml and see what happens. I could then have two more lots over 6 months, depending on whether I needed them, which would go up in size to a proper IV infusion. I think the hope is that I get some GVHD to fight my myeloma, as well as making me 100% donor cells. They may be able to use some of my stored cells, but it would be a waste of a big packet if only 5ml were needed from a big (frozen) packet, so my donor may be asked for more.

    I have had a head cold and missed a week of treatment, but it didn’t develop into anything. I had to take antibiotics though, which made me quite nauseous this time round.

    I am struggling a bit with the treatment – very, very tired a lot of the time. Every few weeks I get a bit of an upset stomach, always on a Sunday, but the rest of the time I am hungry from the steroids and have the usual wind, bloating and indigestion. Also I get a lot of the usual aches and pains and the weekly ups and downs related to the steroids too. But knowing what to expect day by day helps and hopefully it won’t go on too long.

    I still have mouth problems, but was told I had oral thrush. Couldn’t see it but I’ve taken Nystan which has helped, but the pain has returned since I finished it, so I need some more.

    I have also had a hormone test – apparently having an allo transplant can be like a second menopause. It would explain the night sweats and also the fact I have vaginal problems. For the moment I’m using oestrogen cream. I know people don’t talk about these things much, but it can be a real problem for cancer patients generally, both men and women.

    I’ll be seeing the immunology specialist at Leicester near Xmas, to see if I still need immunoglobulin. While it’s a bit of a pain to have it every 3 weeks, I think it has helped to keep infections at bay.

    Not much else to say, but I’ll update again when there’s more news, which is likely to be just after Xmas.

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  • April 2, 2014 /  Myeloma

    Yesterday I had a phone call from Leicester to tell me that my donor had a medical problem that rules her out as my donor. I am hoping that the problem is not a bad one for her – at least it will have been diagnosed earlier than it might have been. I am very grateful that she was on the donor list and hope she is OK.

    We are obviously disappointed. While we were initially shocked by the date we were given, Bob realised that it worked really well for him work-wise and I would have the summer months to recover. We were psyched up for this to go ahead, kitchens notwithstanding!

    Leicester have asked for a new search for a donor to be started asap. It might be we are lucky and get someone within maybe 4 to 6 weeks but of course it could be much longer. This has implications for my myeloma levels until we can go ahead.

    Today I talked to my consultant and we have decided on a strategy which will have to be flexible, depending on the donor situation. I have had two PAD courses of treatment as described in the last entry – quite hard going too! But the first course has brought my kappa myeloma levels down from 479 to 193 which is a very good drop. We won’t know the second for a week or two as I have only just had the blood test, but hopefully it will continue downwards.

    My normal blood test readings are all pretty good – bit borderline anaemic but should be OK soon and platelets, white cells and neutrophils all fine.

    I can probably have two more PAD courses – they are very toxic. So as we don’t know how long it will be before my transplant takes place, we don’t want me to have two right now and then find we have a time gap when my levels could rise again. So we are going to play a bit of a waiting game. We will see what my second PAD cycle did to my levels and also may see whether a donor can be found quickly. In three weeks I see my consultant again and we will reassess the situation.

    In the meantime I am still reducing my steroid dose – it has been quite a struggle to get through the withdrawal symptoms. I have come down from 160 mg a week to 10mg so far. If I have more PAD cycles it will be back up to a high dose, although maybe not quite so high as last time. I am still very tired after weeks of only having about 3 hours of sleep a night. I am still very puffed up and my ankles are permanently swollen at the moment.

    I do need to keep eating as I need to put on weight for the transplant, but the indigestion and bowel issues that brings are not pleasant! I will maybe do that a bit more slowly now, but a note to visitors – I may look more bulgy than I used to!!

    We are also considering what to do about the problem of my bone marrow tests. They have been unable to extract any fluid the last two or three times and the core biopsies have not been good either. So getting accurate readings has been impossible. My consultant is going to look into the equipment used (the needle actually bent the last time time!).

    So in the meantime I guess at least I will get to see my new kitchen! And we have bought a purple carpet!! Can’t believe we have done that!

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  • February 22, 2014 /  Myeloma

    Sorry about the gap  in entries. This is partly because we’re waiting to see what is happening re my  transplant. I was told I had three potential donors and then that there was one good 9 out of 10 match, but we don’t yet know if she is now at the stage of going ahead.

    In the meantime my kappa levels rose a little to 400 and then back down to 300 so I have obviously reached a plateau a little above where we wanted me to be. After discussion with my consultant and the transplant consultant they decided to try me on a regime called PAD. This is the Velcade regime as before (4 injections over 2 weeks with a week rest) together with a nightmare 160 mg of steroids, taken at 40 mg a day, days 1 to 4 each of the three weeks and 4 daily IV doses of an older chemo drug called Adriamycin on days one to 4 of the first week of the cycle. I think cycle two I just get the high dose steroids in the first week but then even so I will need to withdraw slowly. The details need checking as there was some confusion about it to start with.

    I had forgotten how nasty chemo is with the terrible tiredness, queasiness and sore mouth. I may lose my hair but that is not something I mind too much about – it will be lost anyway during the transplant. I found week one the tiredness more or less countered the steroids – I am not used to wanting naps all the time!

    The worst thing is the steroids – the lack of sleep, bloating, digestion issues, huge puffiness from face to feet with a red moon face, the leg weakness and the general mood changes and irritability. I didn’t seem to get withdrawal much except terrible tiredness. Obviously hanging in my system.

    At least my platelets have held up so far and although my peripheral neuropathy is definitely around, it is not too bad.

    This week the sleeplessness has been worse and now I am very tired and also feel completely woolly headed. However, we decided to get the decorating and kitchen DIY work done before the transplant as it can’t be done afterwards (spores in plaster are very dangerous for example) so we have been running around sorting that and trying to move all the stuff from the rooms. So no rest for the wicked. The clearing has been quite therapeutic actually provided I have done it slowly.

    On other news – I had my tooth extracted ok but the hole left is not nice and I keep biting my tongue which has added to the sore mouth problems. No sign of jaw disease though.

    I am having a gastroscopy next week to check out the guts prior to the transplant – especially to see if I have the h.pylori bug. Hope not as I don’t fancy the antibiotics that kill it. I hate these procedures but will have it under sedation as before. I made a decision to come off Omeprazole for my stomach acid as it can make you more prone to hospital infections like c.diff which I had before. I went cold turkey on it but have had to go onto Ranitidine now as the steroids give me terrible acid too.

    I haven’t had any new levels yet and have my rest week with steroids coming up, so nothing much else to report. I will put up an entry when I know more about the transplant.

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  • September 16, 2013 /  Myeloma

    Well it’s been a bit of an up and down time since I last wrote, but then that’s the nature of the beast!

    I began Velcade injections 2 weeks ago. I have them on Tuesdays and Fridays. It requires a blood test first to make sure I can go ahead, and none of my appointments have been quick yet, so hospital parking expenses are well up! Sometimes my hospital makes it up in batches for everyone that day because it is so expensive, so we have to wait for everyone to be cleared to have it!!

    I had my first injection OK on Tuesday, but on Friday, when there’s no clinic and they have meetings etc, I discovered my blood levels were really low. There was a lot of waiting because there was no-one around. Luckily my daughter came over to keep me company! Then a young registrar spoke to me and suddenly said that my myeloma levels were very high and cells were leaking into my blood. If the percentage of these gets too high, the disease can enter a new dangerous and aggressive phase and I would need more treatment. Well that was all a bit of a shock, but I did not panic as I thought I needed more on this and was told that I would have a couple of units of blood on Monday and my consultant would speak to me.

    So on Monday my consultant came and saw me and said she did not think the leakage had reached this point and although my levels had suddenly risen, we should proceed with the Velcade initially. No point in just chucking in anything else until we see how things go. I think the problem was that my levels took a sudden hike over the month she was on holiday – but then how were we to know? I have faith in her and we’ll proceed as she thinks best.

    I can’t pretend that it hasn’t made me a bit anxious and I have had to undergo a bit of psychological readjustment as one does with these things. I need to accept things could go either way atm in terms of disease progression. But I have discussed everything with the family and also with my clinical psych who is brilliant and now I feel OK. One key thing for me was the worry about how my family might cope with my death, but now I believe they will be OK and will support each other. This is a major step forward for me in terms of accepting what might happen and relieving me of anxiety. I am very lucky with my family and support.

    On the actual treatment, for the benefit of other patients: it is going to be hard work. I’m on 80mg of steroids a week, taken in 20s on days 1,2, 4 and 5. I get 10 days off now after 2 weeks of injections and am already starting to feel the withdrawal. I haven’t slept more than 5 to 6 hours a night for a fortnight, sometimes less. My cheeks are frequently pink! My blood pressure is very low and I am very woolly-headeded and sometimes dizzy, as well as quite irritable sometimes (sorry Bob!!). I get terrrible wind and bloating, and some constipation, though had one bout of the runs. Bad acid some evenings. Sore mouth and throat on and off, so gargling/rinsing is important. I think my peripheral neuropathy is worsening with the Velcade, which could be a problem, if my dose has to reduce. Definitely more tingling in the legs and now getting some in the hands for the first time. Bruising too as platelets get very low.

    Having said all that, I am coping OK atm – and of course sometimes you learn to tolerate the drugs better – that certainly happened with Revlimid for me. It is only side effects after all, and you have to learn to go with the flow. I do a lot on steroid days and less when I’m tired.

    It can only be a waiting game now, until we see the first results. Velcade can take a little time for some people. I’ll let you know!

     

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  • April 30, 2013 /  Myeloma

    Sorry it’s been a while, but there’s not been much to report as I am still between treatments. I had my usual appointment today and my kappa light chain levels (which are the measurement used to assess how my myeloma is progressing) are still rising but only relatively slowly and are still a bit of a way from needing to be treated. After I came out of remission prior to my Revlimid treatment I had a similarly slow rise and in fact the levels only rose sharply after my gallbladder op, although that might have been a coincidence. The longer the gap between treatments the better.

    Not to say there haven’t been some problems. I have been extremely tired for reasons which are difficult to explain but could be related to a failure to really get back to normal after coming off steroids. If the tiredness persists they may do a test on my adrenal function. My blood pressure (which is always low at the best of times) has been really low on and off, so they did a postural test today – take it lying down and then sitting up – and there was a drop. Low BP can be associated with my type of myeloma, so it’s something to keep an eye on as my levels rise.

    The other issue for me as always is my digestive system which continues to plague me with acid reflux and attacks of IBS, but I am keeping on top of it as best I can with Omeprazole and the use of Loperimide (Imodium) for the runs!!

    There are other issues, left over from the years of treatments and especially the steroids – weak muscles, aching muscles and joints and painful feet. But I have learned to live with those by and large, with only occasional grumbling (sorry Bob!!).  Did give me an excuse to buy another pair of comfy trainers today!!

    I think sometimes that state of mind plays a big part – we had a lovely couple of nights away at the NUT training centre at Stoke Rochford in Lincolnshire, which also has bookable hotel rooms – cheaper offers for union members! We packed a lot in and I managed to eat more adventurously without coming to major harm. I was pretty tired for a few days after, but it was well worth it and I felt I managed very well overall. Short breaks work really well for us.

    I was put onto a good US website by my friend Eva – it’s got a lot of info much of which is really useful, and you can join a forum with lots of threads on different topics. I get these sent to my email address and have stopped looking at them more than once a week as personally I don’t like to spend too much time pondering my illness and also because there are differences in practice between the UK and US. as well as different names for drugs. There’s a lot of heartening stuff, and some people with a lot of knowledge, but equally, as is the case for all medical forums you must be careful about the info you take from them. There are many variations of myeloma and people’s circumstances and conditions are often very different. The site is Myeloma Beacon: http://www.myelomabeacon.com/.

    So, pottering along. Many thanks to those keeping in touch and visiting etc. It makes a real difference!

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  • 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!

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  • July 27, 2011 /  Myeloma

    Hi, just a quick note to say the meds have put me into remission now – about 3 months now. Hoping it will last! I still have to keep taking the pills, but we are experimenting with cutting the steroids which give me grief. I will write more soon to maybe say more on how the treatment is going, for the benefit of other myeloma patients. Hope you all have a good summer!

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  • March 21, 2011 /  Myeloma

    Good grief – was it that long ago I last wrote? So sorry!

    I’m now on my 8th monthly round of meds and it is pretty wearing, but still manageable. My levels have continued to fall, although the rate of fall is much slower now. There was a stall in progress the month I had shingles which worried me at the time and made me nervous last hospital visit (the blood test results follow quite a time after the event) but it was OK! My immune levels were very low, but not low enough to stop the treatment and I just try to be careful – not too much going out or socialising, keeping hands clean etc.

    The weeks follow quite distinctive patterns –  Mondays are so-so and then I have a large wodge of steroids on Tuesday morning and feel fairly perky Weds and Thurs although they often affect my sleep and digestion. Weirdly I develop bright red cheeks all through Wed, which then fades through Thursday! I then get withdrawal Fridays, Sats and Sundays, and feel pretty dire. The main side effects are: very tired, bad aches and twinges inside and out, bloating, wind, low mood and shaky legs and knees, sore mouth sometimes. It’s a nuisance for it to coincide with the weekend when Bob is at home, but the rounds have to start on the day I see my consultant and Tuesdays are her clinic day.Depending on results I then get the next lot of drugs for a month.

    At the moment I am still taking Gabapentin for post-shingles pain and that has helped me to sleep a bit better. But I am trying to reduce down to one tablet, as they make me pretty stupid too! My Warfarin levels have settled down now and I just get tested once a month.

    I have reached a sort of plateau in my mood – there are times it feels depressing and appointments make me (like many cancer patients) nervous, but now spring has come and I can potter about I feel more cheerful. I have been extremely busy since Xmas with union work – we have run another major public meeting, a demo and a march and rally against the cuts, as well as fund-raising events and stalls and this was all very tiring although most of my work is done by computer and phone. I don’t go to meetings as a rule. However, it has kept me occupied and I will be getting some help from others from now on, especially with publicity and events. I hope to get to the TUC march – I will be going straight to the rally as walking a long way is not possible now and won’t be staying long.

    I do want to get a bit fitter and hope to do more exercise to strengthen my leg muscles – more time walking on the trainer I think!

    So generally ticking along. We hope to have a few days away at some stage which will be good – I do need a break from the house!

    I’ll try to update again a bit more regularly in future. But generally no news is good news!

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  • August 21, 2010 /  Myeloma

    Hi, apologies for being so remiss with my blogs. There wasn’t really much to report.

    Unfortunately back in Feb my light chains (an indicator of my particular myeloma) started to twitch and since then the myeloma has returned – earlier than expected. I did not make this very public until recently as there didn’t seem to be much point until I started treatment. I had to have my gallbladder out (eventually done in early July – painful afterwards but went OK), before the treatment started.

    I have started (this week) a relatively new drug called Revlimid which has over 50% success rate at stabilising or improving myeloma. It does have some potentially dangerous side effects, in particular lowering my blood counts and Deep Vein Thromosis. They may put me on Warfarin to counter this. At the moment I take a small dose of aspirin. I am very tired and quite shaky and no longer need a sleeping tablet – I also have a sleep in the afternoon! Once a week I take a big dose of steroids, which as before, makes me buzzy, hungry and stops me sleeping for a night or two. I also get very pink cheeks and fingers! I do a three week cycle of pills and then get a week off. If it works I could stay on the cycle indefinitely. If it doesn’t then other drug options are available and long term possibly a second transplant – maybe using donor cells this time.

    The good news is that I had a skeletal survey which showed no bone damage yet and my kidneys are OK (often vulnerable in myeloma).

    As the treatment is going to take a while to adapt to, we haven’t gone away for a holiday. Bob is having a great time doing DIY (currently erecting a greenhouse) – he is not very bothered about trips away. It transpired that the kids wanted to do their own thing over the hols so we gave them the money we would have spent. Tom and Jemma went to Paris for a few days and Rosie and Paul did a rock festival in Belgium and then interrail (went to Transylvania!). We have helped Rosie and Paul move into a rented house in Aston. Tom and Jemma are still happy in their own little place and Bob and Paul helped them to erect a shed.

    I have been very busy with union work and writing letters to the paper re the disgraceful spending cuts. I have also started throwing all my old school stuff away – quite a wrench, but has to be done!

    I will try to write more frequently re the treatment and if anyone with myeloma wants to correspond re treatment please do. I still love having visitors, but old rules now have to apply – please only come if you are healthy!

    Hope you all have a good holiday.

    Sarah

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