Time to Start New Treatment

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!!


Tests and Toothache

I’ve had quite a few tests recently. My first one was a routine colonoscopy – serious bowel troubles run on my mother’s side of the family and I already get polyps. My consultant also asked if I could have biopsies for any amyloid deposits (these occur on soft tissues like the heart, lungs, kidneys and bowels) as my type of myeloma can cause this and disrupt their function. The whole thing was very lengthy, though sedation knocks me out pretty well and it only hurt a little bit – well as far as I remember. The whole thing felt like about 5 minutes but actually took nearer 50!  I had 6 polyps round an awkward bend taken out and there was no sign of deposits, but apparently the biopsies may not have gone deep enough to find them. As it was I had a fair amount of bleeding and felt as if I’d been kicked in the guts a couple of times. Took a while to get back to eating normally after all that and the disgusting laxatives. So thank goodness that’s over for another year or two.

I’m still not on any myeloma treatment. My light chain ratios are up and down still but my kappa ones have been fairly static – who knows what that means. But my consultant thought as it had been a while since I had a bone marrow test and x-rays I should have those, and I also had a synacthen test which checks the function of the adrenal glands. It can help to see whether your body is producing enough steroid hormone (cortisol). I’ve been very tired and had very low blood pressure for ages and it could be that my body didn’t start making its own steroids properly after I came of the steroid pills last year.

I had all three tests on one day which was quite difficult in terms of timing. Had a pretty rapid skeletal x-ray survey. Then down to haematology which was very busy. I was eventually started on the synacthen test, which involves having your blood tested as a baseline and then being injected with tetracosactide which stimulates the adrenals to produce cortisol. If the adrenal glands are working properly they should respond to the tetracosactide by producing cortisol. Levels of cortisol are checked by taking a blood sample.

So they test you after half an hour which was fine and then I was suddenly needed for my bone marrow test. This proved to be tricky – usually it is straight forward – there’s a page on it on the blog if you want the details. But this time they couldn’t get a sample from one hip, so I needed to turn over. Then I was ‘dry’ on the other side, so they decided to take the bone sample, which could be enough. My hip bone turned out to be like rock!! The strapping junior doctor who was doing it under supervision, really struggled and there was a lot of pushing with the needle and pulling on my hip – like DIY! It was eventually done and I had a nice little core floating in the liquid they put it in. Immediately after I had to have my last blood test! I was fine at the time, but by the next morning I was extremely sore and bruised on my hips, which is unusual for me, and it’s only just subsiding after several days. I read on one of my myeloma threads that the drug Zometa which I have had monthly to strengthen my bones, may have caused my hips to be so solid – obviously working well!

Trouble is with Zometa is that if you are on it and have to have any tooth extraction or major tooth surgery it can cause a painful and difficult jaw condition called osteonecrosis of the jaw (ONJ). Unfortunately I now have a tooth (mostly filling) which has a dying root and will need either a root canal, which is likely to not take and be very tricky to do as I have a curved root, or an extraction. Expert advice is being sought from maxillofacial at the hospital – hope they come up with something before the toothache gets worse or I get a bad infection. I have precautionary antibiotics to hand.

Well these things are sent to try us. However, the good news is that provided my test results are OK I may not need to see my consultant until early Sept, so the summer may be clear. I won’t count my chickens yet, but I am pleased that I have had a good gap off from treatment.

Hope you all have a good summer.

June – still off treatment

Surprisingly I am still not on any new treatment. While my ratios are bouncing up and down like yoyos, my kappa levels were stable at my previous appointment and went down a bit this month. Difficult to know what is happening. Angela, my consultant has decided we need to take a look at my bone marrow as it’s ages since I last had one, and also to do a full x-ray skeletal survey. Also a synacthen (adrenal gland) test, as my blood pressure is still very low and I’m very tired.

I had a bit of a weird day as I went in for my Zometa drip, blood tests (all fine) and to see Angela. Then  I zapped into town to visit the TUC Austerity Bus which I had helped to organise, and to top up my parking. I then went back to haematology to do a blood pressure postural survey which meant a 15 min lie down and then BP measured lying down and then standing.  As soon as I lay down my heart started thumping away for no apparent reason, which lasted 15 mins. My pulse rate was really high when my BP was measured. The BP itself was well up on normal, with a 7 point drop between measurements.  So no idea what caused that, unless it was all the activity combined with the Zometa.

Since then I have ached very, very badly – only just seem to be getting better. Also felt a bit like I was having a low dose of flu, which is usual for me after Zometa and also a bit anxious. Having looked up the side effects again I see low blood pressure is one, so may be a contributing factor.

Will write again probably after my colonoscopy.

April update – still between treatments

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!

Having a break

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!

Two years on Revlimid

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.

More downs than ups!

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.