• 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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  • October 28, 2013 /  Myeloma

    Just a short update as I realise it’s ages since my last blog. I don’t have very recent news, but at my last consultant’s appointment a couple of weeks ago, she gave me some figures showing the first cycle of Velcade has brought down my myeloma levels a fair bit, so good news there. Everything is always behind hand, as I don’t get the next blood test results until the next appointment, so I can’t say how round two has gone yet. Two weeks into round three atm.

    I am finding the treatment regime quite hard work but doable. Since the first round I have been lucky and not had to have more blood. I think my blood pressure is pretty low sometimes, but I have been OK. The injections in my stomach haven’t left the very bad blotches some people have – I am rubbing my stomach with evening primrose oil as suggested. Atm I have some bruising, but it’s not too bad. I don’t get any bad nausea and only the occasional bit of a headache.My main issue is the fact that my peripheral neuropathy (nerve damage) does seem to be worse and has advanced a bit more up my legs and is also now in my fingers and possibly arms. In fact I seem to get the odd face tingle too. So I am having a nerve induction test on Thursday to see how bad it is. It is quite difficult to be objective about it, as the feeling does change from day to day and when I am puffed up from water retention the PN seems worse.

    The steroids are a real pain. Sleeping is very difficult for the two weeks I am on 80mg a week, and I am lucky to get a few hours a night. I also find it’s tricky to nap however tired I feel. I have been trying to do some useful things at night. I have found myself overdoing it some days and wanting to buzz about. My muscles are completely weak and I’m not yet in a good exercise routine. Must do it!!

    Then withdrawal in the final week is horrible – very tired, shaky, irritable etc. My stomach and guts are permanently inflated for much of the cycle and my consultant doesn’t really want me to take probiotics, which aren’t recommended for people with low immune systems. I’m trying hard not to give into the terrible munchies I get all the time, which makes the problem worse. I am very puffed up and have a mild diuretic, which is so irritating, what with all the peeing!!

    I am going to the hospital maxillofacial unit today as I have a tooth problem and the meds I was on (Zometa) to strengthen my bones, can lead to a nasty bone problem called osteonecrosis of the jaw (ONJ) if a tooth is extracted. I will do more on this once I have had some info as it should be of interest to myeloma patients.

    However, when all is said and done, I am managing to toodle along, with some adjustments to lifestyle. I have withdrawn a bit to a quieter time at home and I guess this will be the pattern for a while. I am trying to do a few things to keep me sane. I keep up the union and political blog writing and editing. I have enjoyed seeing recent visitors who blow in fresh air with them! I am at the theatre this evening to see a Jane Austen production with my daughter and daughter-in-law and we have a couple of comedians to see coming up. We saw the local Diwali procession in town on Saturday which I enjoyed. Also I am baking! It may not be swimming with dolphins or sky diving but it suits me just fine and I am grateful for what I have.

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  • August 21, 2013 /  Myeloma

    So, time to start treatment again. I saw my consultant a couple of weeks ago and my light chains have taken a jump up and the bone marrow results back this decision up – I wonder whether it coincides with my colonoscopy? I feel that any medical incident or illness seems to affect my levels, but who knows? I have done very well in remaining off treatment for a year. My Velcade regime will probably start in the first week of September. I have had a run through of the general points with a nurse and my consultant will ‘consent’ me next week.

    I will be visiting the hospital twice a week – probably Tuesdays and Fridays. The procedure will mean the usual pre-treatment blood test, a wait for results and then what should be a very quick subcutaneous injection, probably into the stomach. It can cause a red, sore disc, but you can use evening primrose oil and there are suggestions on the website I read that ice packs afterwards may help – I need to go back and check that one out.

    I will get two weeks of treatment and then ten days off (so three week cycles). I am not sure how long I’ll get treated for, but it could be 6 or 8 cycles depending on my response.

    I’ll have various other medications, the main one being the dreaded steroids – I think it is 20mg at each treatment and in the week off. So back to the mood ups and downs, wind, indigestion, puffy and sometimes red face and sleepless nights. You also get Aciclovir against shingles and Allpurinol against gout – can’t remember if there were any others, but will let you know when I start. I guess I will still have the Adcal (Vit D and calcium) and the Gabapentin for my peripheral neuropathy.

    It’s the peripheral neuropathy I worry about, as it’s a key side effect of Velcade and I already have it in my feet and lower legs following the Thalidomide treatment before my stem cell transplant. Having it subcutaneously lessens the probabilities but I could still get it and that might mean a lowered Velcade dose. However, we can only wait and see.

    Otherwise it’s the same old side effects as most of these drugs – I am usually fairly tolerant so hoping for the best. I’ll be recording the treatment mainly for the benefit of fellow sufferers.

    In the meantime, things are toodling along, but I am getting very tired now, probably as a result of the myeloma returning. Had a few days away visiting relatives and Rosemoor RHS gardens in Devon, which was great but has really hit my digestion, what with different foods and changes of water, so I’ve had quite severe diarrhoea for three days now, which I’m trying to control with Loperimide and rehydration sachets. Very annoying as I am hungry!

    My tooth problem is yet to be resolved and I’ve heard nothing from either the dentist or the hospital. I’m keeping it under control with mouth rinses etc. I get the odd bout of bad pain, but seem to be able to knock it on the head with paracetamol and clove oil on the tooth.

    We’re going to have a couple of nights in Rochester soon, which I’m looking forward too – have wanted to visit Chatham Docks for ages. We’ll also try to visit RHS Hyde Hall gardens on the way there or back. Here’s hoping the tummy holds out!!


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  • 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!

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  • March 2, 2012 /  Myeloma

    It’s 3.47 am and can’t sleep which is unusual on a Thursday – normally it’s just Tuesdays and sometimes Weds. Have awful acid reflux. Have just changed from Ranitidine – I discovered my Adcal (Calcium Carbonateand D3) reduces its effectiveness. Also a lot of aching and stomach like a balloon!! I know cancer patients are supposed to be uncomplaining and stoical, but sometimes I’m just plain grumpy. Having read a whole book of short stories I gave up trying to sleep and came downstairs. I often do some ironing if I’m up in the night but can’t be bothered.

    Well just nearing the end of my 20th monthly round and although I think the side effects haven’t got worse (except maybe my digestion has deteriorated – constant reflux and a couple of bouts of bad diarrhoea and constipation plus piles), it does seem a bit hard going psychologically. Must be terrible for people who live with worse conditions for many years. It is true you adapt and get on with it, but every now and then I find I get resentful.Also, I am so stupid atm that, for example, I am correcting every few words I write and quite often I can’t write or say a coherent sentence.

    However. Good news is my peripheral neuropathy hasn’t got worse. Also we have a new haematology suite at the hospital. It’s not much bigger but the treatment area is much better. But it is all being funded through charity – and they are only half way through raising £1.5 million for it through Macmillans. Shocking really that we have to rely on donations. I am sure it has affected the income of other charities across the town for ages.

    We are still campaigning against cuts generally and the NHS Reform Bill. Anyone reading this – please do something to oppose this extremely dangerous Bill. Frankly it terrifies me, not least because I could find treatments and drugs no longer available to me in future. And that could apply to any of you one day. All in the name of profit, whatever they say. And my local hospital is now talking about patients having to travel to other centres to get treatment – I will be going along to a meeting next week about that. Write to your MP and paper. There’s lots of good oppositional material online.

    Next week I give up being Sec of Trades Council. I will assist whoever takes over, but I hope to shed a lot of the workload and just assist with a few defined jobs. It’s too tiring, I don’t get to meetings and I want some me/family time. Thinking of trying to take up something creative – I have a whole set of pencils waiting for me to start drawing. Union and political work is still important to me, but there has been a lot of it the last two years and now I will be able to support without having to organise so much.

    We are planning some short hols this year, as we only had one last year. I find a few midweek days at a time more manageable and I don’t feel brilliant Fridays to Sundays. Tonight we booked a few nights in Bruges with my son and his wife! We’ll also go to Floriade later in the summer, a huge flower/plant show in the Netherlands which comes round every 10 years. Then maybe one or two other short breaks back here. No big house or garden projects! So fingers crossed my health remains OK so we can enjoy ourselves.

    Well, maybe I’ll stop drivelling on and go and go out in the garden now! The foxes were mating loudly yesterday. The frogs have returned to the pond. And my bulbs are eventually coming up. The garden is a mess, and I’m looking forward to pottering around as it gets warmer.

    Take care everyone and I’ll try to update a bit sooner (don’t hold me to it!).

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  • 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!

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  • 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.

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