• August 14, 2016 /  Myeloma

    Hi, I realised I haven’t posted in a while. There’s not a lot to update you on.

    After my levels dropped to normal they decided to lower my Revlimid dose from 25 to 15 mg. My light chains then rose slightly to just above normal, but have remained stable there for a couple of tests, so we’re hanging on to see if they will stay there. I don’t really want to go back up to 25, although tbh I haven’t noticed any major difference in how I feel coming down by 10.

    I have just restarted my vaccination schedule and in fact am sitting here typing with sore arms, feeling a bit woozy from 3 hefty jabs.

    I discovered that information about a test for the speed of bowel transit I had done last autumn had not got through properly to anyone, including me – it was done by a locum at the hospital who subsequently left. Gastroenterology sorted it out really quickly. My transit time was incredibly quick – I have the runs and cramps every morning. I have just started some binding medicine called Questran and today – no runs! Nothing in fact! It does taste a bit yucky and I’m a bit worried about getting constipated, but it should help with the absorption of food and nutrients. I’ve lost a bit of weight recently, so hopefully that will stabilise.

    This autumn, if my health is OK, I’m hoping to learn how to self-administer my immunoglobulin. The usual way is via a couple of pumps you insert into the stomach area, but now there is a slow (10 min) injection you can do. I’ll have to get trained at Leicester, but then I’d do it every other day or two, probably in the evening. It would mean that I get a more equal dose over time. Atm I have it IV every three weeks so my levels go high and then trough. I’m very glad to have it, as I’m sure it’s prevented infections.

    I’m almost weaned off citalopram now – I was put on it when I had my transplant, when one of the drugs seemed to make me a bit weird. It has various interactions with other drugs I take, so I decided to come off it, but took it very slowly. Just taking a very small dose on alternate days and hope to be right off it in the next couple of weeks.

    I’m still very tired and have various irritating side effects. I was really hoping to feel a bit better, but as my consultants say, I have been very heavily pretreated now and Revlimid is strong. I’m trying to just go with the flow and rest when I need to. Bob has retired now and is helping a lot with lifts etc, so I don’t have to drive too much.

    Take care all of you with myeloma.

     

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  • May 14, 2016 /  Myeloma

    Sorry it’s been a while, though nothing much of significance has happened. After my DLI I became 100% donor cells. My disease levels (kappa in the 20s) are just above normal, and have been stable for some time and for those who understand, my kappa/lambda ratio is about normal too – which it hasn’t been for years. I am still on Revlimid, but they will try reducing the dose from 25mg to 15mg after this cycle. My Leicester consultant doesn’t want me to have another DLI as it’s not necessary atm and she’s worried about graft versus host disease which can be nasty. She’d also like me to be fit in case they want to try me on any new treatment in the future.

    The downside has been side effects of coming off steroids, which, along with the Revlimid, have knocked me sideways. There has been some disagreement over whether I should be treated with hydrocortisone, but after another test, but the endochronologist at N’ton said I’d only need extra if I was under stress – ie have an infection. Whether this is ok I don’t know, but I am still very tired and my joints ache badly. I guess my cortisol levels will slowly rise back to near normal – let’s just hope it doesn’t take too long.

    So – on balance the important thing – my disease levels – are most important, and as everyone on treatment knows, I just have to put up with the effects of treatment to keep them there. I’m trying to get exercise as much as possible, but to rest when I need to.

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  • February 8, 2016 /  Myeloma

    I hope you all had a good Xmas. Ours was quiet. My daughter’s partner’s mother, who was a good friend, died the Sunday before, from lung cancer and brain tumours. She survived much longer than predicted and we had numerous excursions to the hospital together, and I would call in after my appointments. She died peacefully at home with her two adult children with her. She refused to have a funeral or wake, so the family will scatter her ashes up north where she grew up.

    Not really had much of medical importance to report on recently, but I’ll be off to my consultant tomorrow, so I’ll update on that if anything significant happens.

    I am still on Revlimid (top dose 25mg) and my disease levels are still low (kappa light chains hover around 40ish). I had my first infusion of donor cells to ‘top me up’ just before Xmas. It was a tiny amount and I don’t seem to have had any graft versus host disease, although it’s a bit difficult to know as my digestive problems have worsened and my mouth is very sore, but that could be due to my other treatment.

    I’ll be having a test in a few weeks to see if my percentage of donor cells has risen and then they will decide if I need another infusion, which will be bigger.

    It was also decided to take me off steroids, which in the long term will be great, but I have been reducing pretty quickly and am really struggling with massive fatigue, aching and low moods. If things get too bad I’ll ask to do the last reductions over a longer period of time.

    It will be interesting to see how I am on just the Revlimid and the associated meds like aciclovir etc. I do have bad sweating sometimes, especially at night, which I think is the Revlimid, and sometimes I am having the runs badly.

    I also saw the immunologist at Leicester – poor guy is completely overworked, but he was interesting and gave me more background on my immune system. He’s keeping me on the immunoglobulin IV for the moment and I see him again in July.

    I’ve been really plagued with a dry and painful mouth and am trying various things from the chemist, but the last stuff irritated my throat. It is surprising how annoying it is. I also get catarrh/rhinitis/nasal drip etc, but am used to it really.

    Apologies if this sounds a bit whingy. Coming off steroids does make me low and irritable, but I’m trying to just remind myself it’s the drugs!

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  • November 29, 2015 /  Myeloma

    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.

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  • September 18, 2015 /  Myeloma

    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.

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  • August 5, 2015 /  Myeloma

    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!

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  • June 10, 2015 /  Myeloma

    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 http://www.medicinenet.com/valacyclovir-oral/article.htm. 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.

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  • June 2, 2015 /  Myeloma

    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!

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  • May 5, 2015 /  Myeloma

    The last few weeks have seen quite a bit of good news. My light chains are in the normal range and my IgG immunity is normal, although reliant on regular IV top ups of immunoglobulin. I guess I am feeling a bit better, and have done a few things to get me out of the house now my immune system has improved. Bob has taken me to the library, garden centre and town in the last two or three weeks – that doesn’t sound exciting, but apart from hospital visits and short walks locally, I’ve not been out of the house since my transplant last July.

    There are still some issues. I have to confess to not really understanding my immune system that well. My haem consultant said I could go ahead with going out, eating more widely etc. However, my immunologist, a few weeks later, was more cautious. My IV drip only deals with one aspect of my immunity and there are other parts of my immune system which are still very low. They have mostly been growing slowly, but I am still vulnerable in some ways. So all a bit confusing. As I am naturally cautious, and obsessed with hand washing etc, I hope to remain OK.

    Also, I have the odd paraprotein floating about, although my immunologist said that could happen after a transplant and not to worry.

    The immunologist is writing to Northampton to try to fix up my drips there, which would save a lot of hassle.

    I am investigating my vitamin levels too and had tests for Vit D, B12, Folate and Iron. I had slightly low levels of Vit D which is very common with lots of people, especially in the winter. As I can’t sunbathe (higher risk of skin cancer) I have started taking a low dose to top me up. I am also slightly anaemic. The doctor advised a better diet, but as a non-meat eater, I am taking a liquid iron (in a sachet of water) and vit C supplement. The B12 and folate were fine. Bob and I are trying to improve our diet as he had high blood pressure (on tablets) and borderline high cholesterol.

    We’ve done the dentist too and will be going to the opticians next weekend (I am at higher risk of cataracts now). So covering all our bases!

    I tend to think that following a transplant we need more specific advice on food and exercise – not just don’t eat this, or eat that for example.

    I have just visited my clinical psychologist who is always very helpful, especially in crystallising my problems and the way forward. I tend to feel vulnerable when getting better, paradoxically. There’s always the fear of the disease returning. Also, people think if you look better, you are back to normal, when actually I’m still very tired, and suffer lots of irritating side effects. I am also my own worst enemy as when my energy returns I tend to think (as teachers do) that it should be spent on doing a variety of tasks, be they round the house, or in my case, things related to union and political work. So I have a long ‘to do’ list and none of it is ‘me time’. Seeing Annie always helps me to talk all this through and maybe alter my behaviour.

    So, rather than rattle on I am going to sign off now and take it easy for a while!

     

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  • March 17, 2015 /  Myeloma

    Well things are much the same as the last time I wrote. I’ve had a couple more immunoglobulin sessions, which do wash me out a bit for a couple of days. I have no idea where my immune system is atm as they don’t do regular blood tests, but am hoping I get some idea from my haem consultant in a couple of weeks.

    Last week was very busy with immunoglobulin IV at Leics General on Monday, PEG out Tuesday at Leics Infirmary and my pentamidine inhalation on Thurs at Northampton. Exhausting. The PEG removal was a bit unpleasant as the have to pull the plastic bit which was inside up your throat, but it was over and done with in a flash and I had sedation which helped a bit. No stitches are involved – you just get a dressing on the outside and it heals up by itself – it has almost closed now. However, I do look as if I have two tummy buttons, one above the other!! Now I need to get rid of all the paraphernalia like the pump and the tubes, back to the company. Lovely not to have to flush twice a day.

    I am still amazingly tired, which I just hate. Also, the aching muscles and joint pains, mostly in my legs and ankles is quite bad quite a bit of the time. It has kept me awake, despite painkillers and walking can be painful. How people with worse chronic pain manage I don’t know, but it makes me irritable. I’ll need to ask about it next time I see my consultant. It can be GVHD, but can also just be normal apparently. It comes and goes from one leg to the other and sometimes affects both. If anyone can help with this, do write! Other bits of me are tender like my hips, but not as bad as the leg pains.

    I also have very tender boobs atm! That might be a side effect of one of the drugs – I need to go thru and look to see which. I know I saw it somewhere.

    I had a short letter from my donor! I thought I had to wait for a year to write, but it is nearly a year since he was contacted. He’s a German man in his 20s. I’ll be writing back via my hospital – I don’t know his personal details. Wonderful that donors across the world can help people like me.

     

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