Sarah’s Myeloma Blog

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!

Hi, sitting here at nearly 4 in the morning, unable to sleep because of a cold, which makes me cough every time I lie down. Have just done my Trades Council minutes and agenda and am contemplating doing the ironing!

I am just coming up to the end of round two of the Revlimid. My consultant was away last appointment, but the registrar said that the light chains (my particular measure) had dropped which is good news, although it’s early days yet.

Currently I feel horrible, what with steroid withdrawal, a bad cold/cough and precautionary antibiotics (which always make me feel bad). Just a case of riding it out, but a bit depressing. I haven’t had a cold for so long I’ve forgotten what it’s like! Felt a fraud going into the hospital yesterday to check things out, but my temp was up, not quite to the dreaded 38, but enough to worry me, as my temp is usually a bit on the low side. Typically it had dropped by the time I got the obs done, although then rose again when I got home!! Better safe than sorry though.

Well, not much other news, and maybe I shall try my bed again! Take care everyone!

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.