Making Progress!

Sorry there’s been a bit of a gap. I have been toodling along on my treatment – I’m up to 25 mg of Revlimid now. The good news is that my kappa levels are right down to around 33 – less than twice a normal level. I saw my Leicester consultant a few days ago. She wants to begin donor injections after Xmas. The idea is to start with a tiny amount – about 5ml and see what happens. I could then have two more lots over 6 months, depending on whether I needed them, which would go up in size to a proper IV infusion. I think the hope is that I get some GVHD to fight my myeloma, as well as making me 100% donor cells. They may be able to use some of my stored cells, but it would be a waste of a big packet if only 5ml were needed from a big (frozen) packet, so my donor may be asked for more.

I have had a head cold and missed a week of treatment, but it didn’t develop into anything. I had to take antibiotics though, which made me quite nauseous this time round.

I am struggling a bit with the treatment – very, very tired a lot of the time. Every few weeks I get a bit of an upset stomach, always on a Sunday, but the rest of the time I am hungry from the steroids and have the usual wind, bloating and indigestion. Also I get a lot of the usual aches and pains and the weekly ups and downs related to the steroids too. But knowing what to expect day by day helps and hopefully it won’t go on too long.

I still have mouth problems, but was told I had oral thrush. Couldn’t see it but I’ve taken Nystan which has helped, but the pain has returned since I finished it, so I need some more.

I have also had a hormone test – apparently having an allo transplant can be like a second menopause. It would explain the night sweats and also the fact I have vaginal problems. For the moment I’m using oestrogen cream. I know people don’t talk about these things much, but it can be a real problem for cancer patients generally, both men and women.

I’ll be seeing the immunology specialist at Leicester near Xmas, to see if I still need immunoglobulin. While it’s a bit of a pain to have it every 3 weeks, I think it has helped to keep infections at bay.

Not much else to say, but I’ll update again when there’s more news, which is likely to be just after Xmas.

Back Onto Treatment

Just a quick update. Unfortunately when I saw my consultant last week, my levels, which were 2 months old, had risen (Kappa 465). My ratio was stupidly high as my lambdas were, as always, very low, but we don’t take so much notice of them.

My Leicester consultant has passed me back to Angela, my Northampton one, while she handles the next phase of treatment. Basically this involves me going back on Revlimid and Dex (steroids) to try and get my levels down. Then, if that works, I will go back to Leicester to have one or more donor plasma injections. I wasn’t 100% donor cells, which can be more protective, so this could ‘bump’ me up.

There are possible issues in that they could cause graft versus host disease, although that can also fight the disease! Bit of a balance there!

I started the new regime yesterday – 10 mg of Revlimid once a day for 21 days and a week rest. 40mg dex once a week. Already fingers are swelling up, but on the other hand I feel fairly active! Expecting the usual puffy face. I tolerated this regime well last time, and the Revlimid is at a low dose for the moment (I was on 25 last time). However, having had the transplant, the side effects may be different.

Bit of a blow, but having to just get on with it. It’s complicated by the fact that the Cancer Fund, which deals with rarer conditions and drugs, is being cut for the second time. As I’m on Revlimid, which is being cut for some people, I should continue to get it, but if it doesn’t work, then one of the other possible drugs won’t be available. There are other drugs, but hopefully the Revlimid will work. I have been on it before, and came out of remission after about 18 months or so, so hopefully I haven’t built up a resistance to it.

I’m also having a colonoscopy soon to check out my polyps and also to make sure I haven’t got GVHD in my bowels, as I’ve been having some digestive issues. Can’t wait!!

Not much else to report. I’ll try to post a bit more regularly on how it’s going.

Feeling a bit down

Always with me, when I’m not having treatment I get down periods. I don’t think it’s uncommon. You fight your way through treatment, you are left exhausted, with various niggly problems and you are scared about disease returning. I would just like to enjoy this time, but it seems my brain and other circumstances won’t let me.

A friend of mine (my daughter’s partner’s mum) who has lung cancer and secondary brain tumours, has been deteriorating after an amazing 3 years of treatment and stubborness. The death of others always makes us consider our own mortality. We have talked about it quite bluntly a few times. She has prepared everything practically now, and I think the illness and drugs are making her sleepy and forgetful about what is happening, so I hope she has a peaceful end.

I had another consultant’s appt. She reports on the levels from 2 months ago, because she decides at the consultation what blood tests need to be done. Bit annoying. But I think that she looks at the results as they come in, so anything abnormal would be dealt with. Basically my Ig immune levels were low end of normal, though she couldn’t locate my T cell level on our computer system – she’s from Leicester.

My light chains (measure of disease) were, disappointingly, a bit up from 8 to 21, but they can vary up and down, so they will just monitor them. Trouble is, it sits in your mind. My ratio of kappa to lambda (for those in the know) was, as always, way off. It is basically never normal as my lambda is always very low. Nobody can explain it, so we tend to just look at my kappa readings. I don’t worry about it, as it seems to have always been that way, even in remission.

For the second time recently I have a sore throat on the right side and am snuffly and tired. No temperature – could be hay fever. My last bout a month ago lasted about 5 days, so hoping this will be the same. It seems to come with a headachy feelingĀ  and a general stiffness around my neck.

I also have a sore mouth and lips – this is pretty constant, but I get irritable when I get mouth/tongue ulcers. I don’t know if it’s GVHD (graft versus host disease) causing this. What with that and the throat, eating is not enjoyable atm.

Lastly I had to take myself to eye casualty last week, as I suddenly got flashing in one eye and large floaters. After a long wait (they mislaid my paperwork and didn’t notice until I asked) I was told that due to age and short-sightedness the gel in my eye has ‘collapsed’ as they put it. Luckily there was no retinal detachment or tear, so I have to put up with some flashing (has lessened a bit) and one particularly annoying floater. Apparently you learn to live with it. I will keep an eye (!) on this as it is possible to suffer ocular GVHD, although I don’t think this is it.

This is a very grumbly blog. I would like to be heroic about it all, but it’s too much effort! I can hardly pull myself out of bed in the morning, so it’s good Bob is here atm to get me up. I have told him to be very strict with me (50 Shades of Green Tea) – he makes me move rooms to have my morning cuppa!

On the plus side I have done quite a lot of tidying and paperwork, and we have had a couple of trips out. I usually cheer up a bit then.

Hopefully when I next write I will be feeling better. I am working on it!

Out and About After Shingles

I was freed from hospital on Monday after what proved a light bout of shingles. I have been given a short course of valaciclovir and will then return to probably 3 months of aciclovir. Valaciclovir has some advantages – see Today I discussed the whole thing with my consultant. She said that when people have been taken off prophylactic aciclovir about 40% will get shingles in the next couple of months. Nobody knows quite why this happens. But if I take another course and then come off it in a few months it shouldn’t happen again.

As it stands it wasn’t much of an issue for me, except the fact I endured 8 days of isolation. Maybe people need to be warned though, as it can be nasty for people who are immunocompromised and the more quickly it can be caught the better.

I paced about a lot trying to keep my muscles fit, and it seems to have worked fairly well as yesterday and today I have done my usual walking, although am very tired afterwards. I do think that all patients on visits of more than a few days and who aren’t immobilised should be given suggestions for gentle exercises, some of which can be done seated. We had a small foot pedal machine at Leicester, which was helpful.

I had a new round of blood tests today, including a free light chain one (shows my disease level) and also my immune system levels. I won’t know the results for a while, unless there is a problem. My next immunoglobulin drip will be here in Northampton next Monday, instead of Leicester, which will be very helpful.

Not sure if anyone from Northampton reads my blog, but I have to say that the staff were all great while I was in – from cleaners to consultants. They are working under tremendous pressure and staff shortages, but are always cheerful and helpful.

Shingles AGAIN!

Well I was only saying to a friend last week that I hadn’t had a spell in hospital since last December… but here I am. Started last Saturday when I started scratching an itch on my right trunk to the side and it was quite sore. I had been feeling vaguely unwell for a couple of days – very tired. So when I looked a saw a small patch of shingle I knew I had to act fast.

I had been taken off aciclovir tablets only a couple of months ago, having been on them for years, so I was probably vulnerable. As it was I immediately took one of my remaining tablets and got myself off to hospital – I was lucky as Northampton had a bed available in the cancer ward.

As I’m immunocompromised I have to have IV aciclovir for maybe 5 to 7 days – a really hefty dose 3 times a day. Also I’m in isolation, as I could infect a patient who hasn’t had chicken pox. The med is very strong and sometimes it hurts as it goes in. The flushing afterwards is really painful. Apparently local inflammation is common in up to 10% of cases. I had to have the first cannula out when the back of my hand swelled up and I started to leak aciclovir!

Apart from that my spots have not spread and there hasn’t been too much pain. It’s in the same area as before. Last time I was in agony, but I have more of a generalised aching this time. The drug has made me a bit queasy. Just beware that in big doses it can damage the kidneys and liver, so drink plenty if you have to take it. Also, rarely it can cause mental problems like hallucinations, so if you start feeling a bit weird, then tell somebody straight away.

I have taken the opportunity to get the place where my line was to be checked. It was dug out hurriedly when I had an infection before Xmas (though it probably wasn’t the cause) and left a scar which seemed to heal OK. But for some weeks it has been red and a bit sore and lumpy round the site. So off to x-ray at some stage to make sure nothing was left in there, like the cuff.

Will update again when I’m let out!

Started my Immunoglobulin Treatment

Well quite a while since I last wrote. I managed to be at home for Xmas – Bob did both the cake – delicious- and the Xmas dinner (I just did the sprouts!), and the kids and their partners had Xmas dinner with the other parents and then came for an orgy of present swapping and a buffet in the evening.

I have started my immunoglobulin IV at Leicester General – got hopelessly lost on our first appt! They up the delivery rate very slowly and I was told a lady had, very unusually, had a bad reaction very recently, which had obviously frightened everyone. It probably wasn’t the best time to tell me that, as I spent the first session wondering if I was suddenly going to keel over, but luckily I didn’t. I didn’t seem to have any side effects except being rather more tired than usual, though tiredness is a default state with me, especially after long trips. I’ve had 2 sessions so far.

Once I am fully ‘loaded’ it looks as if I might be able to have my IV at Northampton every three weeks, which will be great, as my my haem consultant appts are being moved to N’ton too. So I will only need to travel to Leicester if I am ill, or if I have to have procedures.

My own immune system has apparently shown some signs of life. I have been taken off my immunosuppressant (Ciclosporin) and am down to 2 mg of steroids a day. However, my paraproteins have shown a rise. This does not necessarily mean a return of the disease, but they need to keep an eye on them. I should be having a free light chain test next visit so we’ll get a better idea.

I was put on Azithromycin (antibiotic) before I started my IV, and didn’t like it much. I happened to mention that my hearing felt as if it was that sensation you get before they pop, and she immediately took me off them, so watch out for that if you are prescribed them. You can become deaf. I’m now on a lowish dose of Amoxycillin.

Generally I’m not too bad. I still suffer tiredness. This is partly as I weaned myself slowly off zopiclone, and now can’t sleep until about 2am. My haem consultant warned me against the ‘push too hard and then collapse’ syndrome which happens with lots of patients. I walk every day and try to keep active. Since Xmas I have gradually developed very achy muscles and joints. It started with my knees and now affects much of my body, but it makes me limp sometimes, as my calves are quite bad. I’ve had to take paracetamol a few times. It’s worse in the early morning and evening. I gather transplant GVHD can cause this, and I have been coming down off the immunosuppressants, so it could be that. Will be raising it with my consultant next week.

I also have a sore mouth, lips and tongue and nothing seems to work on them. I get a red and sometimes itchy rash on my neck and my skin sometimes flakes very badly. However, these are all relatively minor, though they do make me grumble!

My PEG should be coming out in the next few weeks. I am eating more, though have lost a bit of weight. After 40 years of not eating meat (do eat fish) I have tried my first bit of meat – a rasher of bacon. My consultant said I needed more protein to build my muscles and I kept having weird dreams about getting to the serving area in a canteen and finding they had run out of food!!! I can’t eat much cheese since my gallbladder came out, I find nuts indigestible, beans too windy and there is only so much fish and egg you can eat. My digestive system obviously wasn’t sure about the bacon, but I will keep trying. There are meats like chicken I just don’t want. I don’t need much as we all eat too much protein anyway. I was quite surprised that the bacon, which was supposed to be good quality, was not as tasty as I remembered.

The other problem I have is memory loss and lack of concentration. Both my long and short term memory seem very bad, though short term is worst. I can still do a fair number of University Challenge questions, but am hopeless at programmes like Only Connect and Countdown. Not that I was brilliant before! I can’t do the Guardian quick crossword and have really struggled with cryptics. Names are beyond me, and I have many ‘senior’ moments. Bob and I would be stuck without the ‘pause’ on the TV as he’s always struggled with plots, not being a novel reader, and now I can’t do them either. In fact he’s better then me now. Also, my written work is full of typos and I have forgotten some of my spellings, so forgive my mistakes! Just hope the brain cells will return.

To finish with – I was very sorry to find out that Mike Marqusee, the writer and poet, who had MM too, died recently. His poems about having MM in his collection ‘Street Music’ are well worth reading by patients, carers and medical staff.



Happy New Year Everyone

Well sorry everyone that I haven’t written sooner. When I came out of hospital there was so much to do for Xmas in a short space of time.

I had my bronchoscopy. It was not a good day. To start with the ambulance to take me to Glenfield did not turn up so the time for my bronchoscopy came and went. The service is privatised (Arriva) and does not seem organised. At one stage they were saying that as I came from Northampton, one of their ambulances should take me!! Eventually after wasting a lot of nurse’s time on the phone I was given an emergency ambulance. We had to rush as Glenfield said I had to be there by half two (my appt had been 1pm), so I didn’t use a wheelchair and tottered down with the help of an ambulance man.

I had the procedure pretty quickly. The sedation did not really work. The most painful part was getting a tube up my nose – my nostrils are narrow so they tried both sides and it really hurt. Once the tube was down there I was OK – they anaesthetise your throat and lower down, so the worst that happens is you cough as they spray fluid into your lungs. This coughing lasts a day or so. Also your nose can be sore. They kept saying my heart rate was high, but this was hardly surprising considering the rush and the pain. Anyway they did it all quickly.

Then there was a similar problem with ambulances – I was ready for an ambulance by about 3.30 and but did not get back until 8! I had to wait in a cold outpatient ward with a nurse who will get time in lieu, so there was a cost implication. I was exhausted, but there were no wheelchairs so had to walk back up to the ward. I did talk to the ambulance men who said Arriva did not have enough ambulances and the turnover of staff was very high.

Anyway, thankfully my results were negative, otherwise I would have had to go into hospital every day for a month to have an hour’s drip for a fungal infection.

I did not resume my PEG when I got home, and have been eating better, but my digestive system is pretty shell shocked and Xmas food did not really agree with me! I am trying to have some bland stuff now.

I have also had an appt with immunology, as I have no antibodies at all, so my immune system is non-existent. Upshot of that was I am on a strong antibiotic atm as I’ve had all these infections, while they decide what to do. I can be taught how to inject myself with whatever it is that will improve my immune system – immunoglobulin? Or I can have it IV every three weeks. There are practical problems atm as Bob can’t take lots of days off, but we’ll cross that bridge when we come to it. My next appt is Feb I think, so another month or more stuck in the house.

However, we had a good Xmas and are ticking along. I have plenty to do here, especially paper sorting – the study looks as if a bomb has hit it!

All the best to you all and especially everyone who has sent messages and also all those with myeloma and their carers.

More hospital visits

Well since I last wrote I have had two more stays in hospital – I am in Leicester atm and was in Northampton. The gap between visits was small. I was very nauseated and going to the loo a lot with the first visit and couldn’t make the journey up to Leicester. However, Northampton don’t have the facilities and knowledge that Leicester do (one of my tests was sent to the wrong place and the result hadn’t come back before I left) and they didn’t really get to the bottom of things.

I stupidly tried to go back up to the previous amount of feed on my PEG, but it was too quick and I had stomach problems. The dietician and consultant agreed I could reduce the amount. However, I struggled with even this amount. Then last Monday night I was very shivery, was sick and had a high temperature. Managed to make the journey here.

At first they thought I had a line infection, so a registrar took the decision to take my Hickman line out, which may have been wise but has caused huge problems as it was very difficult then to put cannulas in. I needed 2 and it took 9 or 10 goes by several people to get them in. One person was really poor at it and tried 4 times before getting it in. However they both had to be removed as they didn’t work for more than a short while and one ‘blew’ the vein. Another worked OK for a while (I only needed one by this stage) and then had to go as it started bleeding. The last one on the back of my hand was working beautifully until I staggered a bit getting off the loo and knocked it out. Atm I have nothing – someone is coming to put one in this afternoon, but where it will go I don’t know as all my usual veins are covered in needle marks – look like a drug user!

The next theory was that I had a chest infection – the consultants heard crackles in my lungs, although I wasn’t coughing. I was told it was pneumonia of a sort. I have been told I have to have a bronchoscopy this week – another nasty procedure to look forward to (tube down throat into lungs). Hoping the sedation will knock me out, but not too hopeful. It will be at another Leicester hospital. I have been taking a strong antibiotic, which they have just stopped, and a very strong anti-fungal. They give you the anti-fungal just for 10 mins the first time, as the possible side effects can be severe. Then wait half an hour while you imagine you have all the side effects and then you get an hour’s worth. I do feel very queasy afterwards, but can cope with it.

Atm I seem to have a head cold of sorts.

I had given the PEG a miss, but the day following a restart with only a small amount I had incredibly severe nausea and spent the day retching from waking at 6 until around 11pm when it began to ease. The consultant said that PEG feeding and strong drugs don’t mix, so I have taken myself off the feeds altogether atm and will try just to eat more, but gradually. I am trying a bit of cooked lunch today! Not feeling like it, and it always comes very early, but once I start eating I can usually manage a bit.

I am in the bone marrow unit, so very privileged! The rooms are big and the nurses lovely. They are woefully stretched. I wrote to Leicester about staffing after my stay on ward 41 and they wrote back admitting there were three occasions during my stay of staff not being up to complement, but there was a lot of waffle and mention of a staff review, which staff are very cynical about. Patients don’t like to ring for the staff – I find myself saving up things I need, so I don’t have to pester them for mundane things. They need a nursing assistant on the ward at all times to do those things and provide general support. I will be writing again! It is important.

You will have got the impression that it’s been a bit tough, and it has been, but I seem to be able to cope with hospital a bit better now and on days when I feel better have generally read, watched rubbish TV, done work on the computer etc. I guess at some stage I will start to improve – people still say it’s early days and it could take a year.


Slow Progress

Sorry it’s been a while. A couple of weeks ago I had a short (Fri-Sun) stay in hospital – they wanted to test for c.difficile after my poo went green!! Tests were negative and they really needed the room, so out I came! It seems a bit two steps forward and one back atm. I’ve had an appt today and though the graft has fully taken and my neutrafils are normal (can fight off bacterial infections OK) my immune system is much lower than it should be by now so I am very vulnerable to viral infections. Leicester are arranging some sort of injections to help protect me – more info on that when it starts. I feel a bit paranoid about the low levels, but apart from hospital visits I don’t go into any public places and Bob has had his flu jab which should take effect soon.

I had a bone marrow biopsy – you may remember from previous posts that they have not been able to get any fluid or core from me for quite a while. This time after a lot of struggling they got a bit of fluid but no core. Still bruised after two weeks! However, the fluid looked fairly positive on the disease front and for those in the know, my paraproteins levels are good.

I am still pretty weedy although I can walk further now so can be out for about 15 mins or so if I take it slowly. My appetite is not brilliant, so I need to try and get a bit more down me, especially protein. Still being fed through the stomach tube at night.

Other medical niggles are things like sore and watery eyes, sensitive mouth, tongue and skin generally. More annoyingly I get low moods on and off – probably related to coming down on the steroids, but possibly also being quite isolated in the house all day I guess, though I am fairly good in my own company and have lists of things I need to do. Just a question of fighting through – I do some exercise or a specific task.

My hair is just starting to come back – looks very grey. Unfortunately I am also affected by hirsutism from the drugs, so I have definite sideburns and am fighting a losing battle against a moustache and beard!! Perhaps I should raise money for Movember! Can’t shave or cream it off so I am putting up with it. It’s not the most important problem I have to face.

So just plodding along at home, interspersed with occasional hospital visits.

Another stay in hospital

I am being discharged today from Leicester after about 5 or 6 days. Was going to the loo a lot and didn’t feel well. I was put in a side room in case I was infectious and pumped with the usual precautionary antibiotics.

I was sent for an endoscopy to see if there was any graft versus host disease. I was dreading it as last time it hurt despite sedation. This time for some reason the sedation didn’t work at all but it didn’t hurt and I watched it on the computer, so great relief.

It picked up two small red patches of inflammation which have been interpreted as GVHD in the rectal passage. The solution – bumping my steroids up to 30 mg a day – big dose! I now feel light-headed, restless and slightly removed from things sometimes. The plus side – I am eating a bit more. But it’s going to be horrible coming down from the high dose all over again. I don’t take well to steroids, but neither do lots of people.

Something which has concerned me is my mental capacity to handle being in hospital and a new vulnerability. After the transplant, which I handled quite well, I went home but then had to come back in after a few days for about 3 weeks for an infection. During that time I became very low and lethargic and didn’t want to do anything. I couldn’t concentrate on anything, and spent ages just lying. The staff were very worried about this and I did get an anti-depressant. Of course I was in early recovery stage from the transplant and the week of high dose chemo. A high percentage of cancer patients become depressed after treatment.

This time round I decided to be more proactive. I walked on the spot several times a day and tried to vary activities. I propped open my door so I could see a bit of the ward on the advise of a nurse. No TV in the room, although one just seemed to be fitted a couple of days ago while I had my op – I only noticed yesterday.

Despite best efforts I could feel myself sliding a bit. Also I had two periods of major anxiety – one for the day before the op which thankfully was bought forward. That I guess is relatively normal. The other was very weird. You can hear staff talking about patients all the time. I heard my name once or twice and what appeared to be serious tones, and I became convinced there was something wrong. I asked to see a doctor for reassurance but nobody came, until after a horrible day of worry a young registrarĀ  to just popped in and talk to me. I was so relieved I cried. I then felt very stupid.

I have got through years of treatment, by and large dealing with it pretty well. I have not had many episodes in hospital luckily and they were short, apart from the transplants.

I think that the donor transplant really takes it out of you, mentally and physically. The thought of such a long haul, with periodic visits to hospital and all the ups and downs probably for at least the first year, with the likelihood of some lasting GVHD problems is really hitting home.

I think the importance of planning a good structure to your day, in or out of hospital is important, but also you need to be aware that post transplant tiredness is normal and resting is OK. So pacing oneself is important.

Unfortunately hospitals are so understaffed that staff in general haven’t the time to stop and talk. I know they would like to. There should be a plan for dealing with the mental support of patients with a team of people and probably some designated staff on each ward who can do referrals etc. In the long term – more staff needed.

In a future blog I will have a rant about the shortage of beds and staffing, but tired now so will stop and have a bit to eat and start getting packed up.