• April update – still between treatments

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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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  • Having a break

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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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  • Two years on Revlimid

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    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.

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  • More downs than ups!

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    April 14, 2012 /  Myeloma

    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.

     

     

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  • March 2012 update – plodding along

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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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  • Update

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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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  • Still plodding on

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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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  • In remission atm

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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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  • Update

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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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  • Happy New Year

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    December 31, 2010 /  Myeloma

    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!

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