Sarah’s Myeloma Blog

Hi folks. Since I last wrote things have been a bit more of a struggle than usual. I must say I have been very lucky up to now, as I think the last time I was poorly was when I had shingles in Nov 2010. I seem to be making up for it atm. To cut a long story short I caught a cough/cold bug and developed a chest infection. It wasn’t too bad but I had to be hospitalised and was pumped with the usual cocktail of antibiotics – drip, IV and tablets. As always I immediately got the runs and my potassium levels went down. However, I made relatively good progress and came out after a few days with a course of antibiotic tablets to take. Everything seemed to be going OK and having been off Revlimid and steroids for a couple of weeks I restarted them after my normal hospital appointment. I then immediately started to get diarrhoea again. I assumed this was due to restarting the meds as I do sometimes get the runs the week after the ‘rest’ week for Revlimid. However, after a few days it didn’t go and seemed quite bad, so I sought advice and after a stool sample was taken I was diagnosed with c.difficile. Now I was aware of this illness, but hadn’t really looked at it in detail. I had had 2 negative stool tests after all. I really think hospitals should be giving patients leaflets about this. I would certainly have got tested earlier.

It’s not very nice (the wind can create a hole in the ozone layer!), it can be serious for older, frailer people, it can be difficult to get rid of (I am on one of 2 different antibiotics which target it), there’s a 20 to 25% chance of  relapse and it’s really tricky to get rid of the spores in your house. Given I’m likely to have antibiotics for infections in the future and could be more prone now, it’s generally annoying. It doesn’t affect healthy adults so it shouldn’t affect Bob or other people, but the spores can be picked up and moved ar0und. Luckily I am a fanatical handwasher these days! Alcoholic gel is not good – you have to use soap and water. So it’s out with the bleach – only thing that gets rid of it on hard surfaces. Lots of washing bedding etc on high heat. And fingers crossed!

So folks – beware! Hospitals, a low immune system and antibiotics are risk factors. Some adults carry c.diff without knowing. So if you get diarrhoea (esp if it’s green!) and wind after antibiotics, at hospital or home, then get tested asap. Hope to be able to say I’m better by the next time I post, but if you need more info, do write.

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!).

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!

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!

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!

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!

I hope you all have a Happy New Year. We are going to be spending it very quietly, with just my son and daughter-in-law round.

I am really tired, having gone out yesterday for the first time for weeks with my daughter to do some party clothes shopping for her! I was probably out 3 hours. Got her a lovely dress but today I can hardly keep my eyes open despite having slept late, and I feel very shaky.

Re the shingles: the Gabapentin seems to be getting rid of the twitching back muscles, but not touching the nerve pain round my trunk, so 50% success I suppose. It also makes me amazingly sleepy and stupid – hopefully I will get more accustomed to it soon, but I seem to remember that the side effects didn’t wear off last time. The site of my rash is still red and a bit tender. I had some success with Sudocrem when it was still quite inflamed, but am now using a good moisturiser on the advice of the doctor and it seems to be gradually fading.

I am just coming to the end of my latest cycle of 3 weeks which probably explains why I feel a bit grottier than usual – from next Tues I get a week off the Revlimid. I have had some mood swings the last day or so – very irritable mainly – I just tell myself it’s the pills (usually withdrawal from the steroids) and retreat away from everyone in case I start getting snappy!!

My Warfarin levels are all over the place – they were getting on the high side a week ago, but then my last one was really low, so no idea what is causing that. I thought Gabapentin might be to blame but a bit of research on the internet found that it shouldn’t be a problem.

Hoping that the improvement in my blood levels over the past few months continues – I will have another test in a bit over a week’s time. Revlimid can be a really good long-term treatment for myeloma.

All the best to everyone and thanks very much to all those who have kept in touch and visited – it really helps!

Firstly many thanks to those who have left comments and sorry I didn’t respond individually – it has been one of those weeks! It is good to know the blog can be useful.

Well I’d hoped that I’d be feeling a lot better by now, but despite the last scab falling off the rash is still very painful – it looks raw in places where the scabs came off and the whole area is tender and prickly. Not only that but almost since the start I have had very weird electric shock type nerve contractions centre/side back mostly when lying down on my right and sometimes left side. I end up having to sleep slightly propped up or flat on my back, which I hate. I’m hoping that this will gradually go, as I know that you can be left with this sort of thing for months.

In the meantime I have continued with the imipramine – no idea whether it is doing anything – and am trying Vaseline on the rash. Also I have been put on a low daily dose of aciclovir to prevent me getting another bout of shingles – what a thought!

I did get an extra week off my treatment, and restarted last Tuesday. The good news was that another test showed my light chains down again! Of course the side-effects are making me a bit down – by Sat I’m usually pretty grotty – but I’m taking it very easy!

Despite it all I have actually tried to keep busy – stacks of anti-cuts work via emails have taken up a lot of time. I have also tried to do some physical activity every day, even if it is housework!

Well – not much other news. I see from emails I get from the International MM Federation that there are lots of new drugs and regimes being tested, so hopefully as time goes by, MM will become much more of a chronic condition.

I hope you all have a good Xmas and I’ll write again soon.

Having got through several rounds of treatment with some success in reducing the ‘bad’ levels, I have suddenly developed shingles, probably as a result of my depressed immune system.

I write the next bit more for the benefit of fellow myeloma sufferers who may get the disease! So friends can skip the gory details.

Shingles presents differently for different people, so mine is only one experience and yours might be dealt with in a different way, depending on your age, state of health and the location of the rash. In immuno-compromised patients and the elderly it can be dangerous so make sure you get treatment immediately you suspect it.

I started off with an increasingly severe and mysterious pain/deep ache developing round my trunk from the right back, spreading over a day or so to under my right ribs. It also felt oddly tingly sometimes. I was baffled by it (I have had my gallbladder out so it couldn’t be that!) and combined with my normal drug side-effects felt very miserable. Went to the hospital on Monday, after suffering over the weekend. Nothing showed up but my consultant noticed a couple of small red spots and said it could be shingles but was reluctant to begin treatment until more spots appeared. It’s really difficult to diagnose – people occasionally have their appendix out by mistake!!

On Tuesday I had to go for my Warfarin INR test at the GPs and the rash had suddenly spread under my arm. The nurse took a look and said it was shingles. To save time my GP prescribed aciclovir, an anti-viral 800mg x5 a day. The earlier you get an anti-viral the better.

The next couple of days I was in a huge amount of pain – and I say that as someone who tolerates pain quite well. Shingles runs along a nerve (can be anywhere) and mine is just under my ribcage. I had very sharp stabbing pains, especially when I stood or tried to walk, enough to make me catch my breath. I could hardly do anything and I couldn’t sleep properly. Totally miserable and I should have got help earlier.

Eventually I rang the GP and she gave me co-codamol and also imipramine, which is an anti-depressant, but which can be used in a very small dose for nerve pain. I don’t know which drug (Acyclovir or imipramine) worked, but by the next day the sharp pains had reduced considerably. I don’t tolerate co-codamol very well so only took 3 or 4 over a day or so and then stopped.

By now I had (and still have) a pretty big rash, on my right side from mid front to nearly mid back. It looks red and blotchy, scattered with pustules like chickenpox. The rash can continue to develop and spread for up to a week. I have also felt generally poorly with my temperature up a bit and sweating esp at night. The medication gives me terrible acid and I have felt dizzy, which is probably the meds too. My skin is generally sore, not just my rash. The rash itself is tender and a bit itchy, but I have slathered calamine lotion over it twice a day.

Into hospital today for a myeloma appt, and as my neutrofils (measure immune levels) were very low, all my treatment has been suspended for at least a week (ie both revlimid and steroids).

My blood levels for my Warfarin treatment have also gone haywire – rocketing up well above the norm and then pummeting dramatically after the dose was cut. This is due as much to the drugs as the illness. This means having a blood test every 3 to 4 days to change the dosage.

At this stage I can say that the worst pain is gone but last night on lying down I had quite a lot of strong ‘electric shock’ sensations mid back, especially lying on my right side. It’s like a shooting sensation down a nerve all down my back and makes me twitch. I’m hoping this isn’t a sign that I will get the dreaded post-herpetic neuralgia – that is pain that lasts for weeks, months or even years after a bout of shingles. I already have peuripheral neuropathy in my feet and apparently that can make you more vulnerable to lasting pain. However, there are some drug treatments and it might never happen! Let’s take an optimistic view!

I still feel very tired and sore but can walk around. I have a vague headache on and off.

It’s all a bit disappointing as I did a lot of work on our local anti-cuts campaign and then couldn’t go to the public meeting which we organised and won’t be able to go to  the next meeting or Trades Council. However, you’d be surprised what you can do from the computer!!

To sumarise a few issues:

If you get a mysterious band of pain developing anywhere or itching/tender skin, consider shingles.

If it’s on your face/head get seen quickly!

You don’t catch it from people with chickenpox. It comes from the chickenpox virus luring within you and popping out!! Shingles isn’t catching either. You can rarely give chickenpox to others via the rash, so avoid people, esp small children and pregnant women until your last scab drops off.

Get an anti-viral asap. Don’t be a hero – get something for the pain if it’s bad – sooner rather than later. It may help with quicker recovery too. If I had known I would have got the imipramine earlier. Good old calamine for the rash. Can also use icepacks – I haven’t personally, but might try it as the rash does feel hot and itchy.

If you have a low immune system already, you may need to cut back on eg anti-cancer drugs, so ask your consultant.

If you are on Warfarin, you will need to tell the anti-coag people about it and the drugs and get regularly tested.

Take it easy.That’s an order! You wouldn’t believe how many books I’ve read….

Don’t get the rash wet. Keep as clean as possible and try not to touch or scratch your rash – wear loose clothes.

Get others to drive you to appointments or get a taxi – I have been quite befuddled. Still am, so if this is full of typos – that’s my excuse.

Hope this is helpful – if I can remember how to do it I will add a link or two.

Will catch up with the story in a few days!

Just read my rather miserable last blog! I did feel pretty grotty what with the cough and horrid antibiotics which upset my stomach, but I did get over it OK and I’m sure quite a few of you had bad colds too!

I’m plodding through the latest round of treatment. Won’t pretend it’s not hard work, but still managing it and I pretty much know what to expect on each day of the week. I’m waiting for another test result and hoping it shows as good an improvement as the first one.

I have managed to put a bit of weight on – steroids give me a big appetite, even when they also make me a bit nauseous – sort of a bit like pregnancy! And now the gallbladder is out I’m eating a bit more fat. My most embarrassing side effects are bright red cheeks mostly Thurs and Fridays, a trembling voice sometimes and a terrible memory (forgetting what I was saying and doing very quickly).

The last week has been all union and anti-cuts stuff, but I am hoping to get some gardening done. Lots to plant still.

For the benefit of other myeloma people I may try to write a document on the treatment I am on atm, just for interest. It will be a document not a blog.

Anyway, no more news, so take care everyone!