• May 8, 2017 /  Myeloma

    Well, I’ve had to move on. Pom didn’t work very well. My levels went up high – mid – 2000s and even though they then stabilised, there wasn’t any sign they’d come down. I was very fatigued, but otherwise coped OK. Easter was a bit manic – my consultant was away and while we knew that I’d be going on PVD, I was put on a lot of steroids just to try and hold me steady. Coming down was a nightmare, but I did get some smaller doses to wean me off.

    So I’ve been on PVD for a week. It’s quite complicated. I have a chart to help. The regime runs in 3 week cycles. The Panobinostat (also called Farydak) is on 6 days of the first 2 weeks, so has gaps between. I have to go into the hospital for subcut Velcade injections twice a week (Tues and Friday), which is a nuisance. Then I also have quite a lot of Dex (steroid) on several days. Then at the end of two weeks I get what amounts to 10 days off. I am not looking forward to the Dex withdrawal during that period.

    I didn’t have any major issues until yesterday, when I was on the loo a lot and felt very tired. I slept quite a bit of the day. Then we went for a walk round the lake and on the way back I felt very faint and weak, though I recovered quickly once I sat down and had a drink. Pano is known for the runs and also the general regime can make you faint and dizzy and bring the blood pressure down. Mine is low anyway. So I guess I will need to take it easy. I am ofc taking Questran for my bile acid malabsorption which causes diarrhoea, so I have upped that a bit and yesterday I took Loperimide too (Imodium), so I’m hoping to keep the runs at bay. I will take advice on it. Today things aren’t so bad, but I’ll be back on Pano tomorrow so might expect them again on Wed. I’m also feeling more nausea than usual – I’m not a ‘sicky’ person but I think I may have to use my anti-sickness drugs a bit more. It is likely though that I will get accustomed to the regime and have fewer side effects.

    There is a practical issue to the new regime. I already self-inject my immunoglobulins 3 times a week and some Eprex, which boosts my red blood cells, once a week. This means that I have to find space for 2 Velcade injections. I have begun putting the Eprex into my thigh – which is painful! The Velcade is leaving quite large red blotches, but they are fading over a few days. I am not leaving big marks from my Igs, but do have a couple of big bruises from doing some things too close together. So I’m having to try and be very careful about where everything goes. I have not been taught how to self-inject the Igs into the thigh, and I’m not sure they would be keen on me doing that as you have to get a whole syringe full into the soft part over 10 mins, and the thigh might not work as well as the stomach.

    Generally I’ve felt a bit low so far on this – it’s quite hard work, and I would really like to feel well enough to go out and about a bit. I have done so many medications now I think it’s taken a bit of a toll on my constitution. Keeping hopeful that I will adapt quite soon and also that the regime works as well as it does for other people.

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  • February 3, 2017 /  Myeloma

    I didn’t realise how long it has been since I last wrote. Christmas was quiet but very good.

    My levels continues to rise. I did more Revlimid and my consultant added in the dreaded Dex at 40mg. But to no avail. We have decided that I should go on Pomalidomide. It’s the next iteration from Revlimid and you have it in the same way – pills for three weeks and a week off. Dex every week on the first day of my cycle. That’s why I’m up at 3.40 am writing this! I’m on my second week of Pom now, and haven’t noticed much difference. More fatigue perhaps and I’ve had to up my Questran to stop the runs returning. But I’ve also been put back on Zometa IV once a month for my bones and that requires Adcal/D3 – 4 more tablets a day, away from other meds. And also I’m having allpurinol (for uric acid) – it’s common to have at least a month’s worth. So these drugs may be partly the cause for the bad tummy and bowels. I’ve certainly had very bad acid reflux. My list of medicines is now truly impressive!

    Apart from the usual aches and pains I have had periods of bad cramps in hands and feet, which are quite unnerving – my thumb can suddenly lock for example. But I haven’t had them as badly more recently so I’m hoping it’s a temporary thing. Very well known side effect of Revlimid.

    So just a question of waiting for the next blood results which will be in a few weeks time. Hoping at the very least things may have stabilised, but one round won’t be enough to tell.

    I was hospitalised for one night as I complained of being a bit breathless. They didn’t hang around – Revlimid can cause blood clots. In and out of x-ray, CT scan, oxygen tests etc. Nothing. But I have discovered I am anaemic again, so hopefully they might do something about that. I had to go on Clexane injections (blood thinner) and what with that and my immunoglob injections 3 times a week, my stomach was very bruised. I tried it in my thighs and buttocks, but the size of the bruises was huge – still got them though I’ve been off Clexane for a couple of weeks.

    Went to Leicester to see my immunologist – saw a new member of staff who was lovely and very thorough. She gave me a ring when some blood tests came through and was very supportive. My Ig levels are normal, if a bit low end.

    So that’s about all. My brother had a successful bowel cancer op – 25 cms out, glued back together, all by keyhole, no stoma bag, no spread as far as they can see. He’s still in a bit of discomfort not surprisingly, especially as I guess his bowels have all been shuffled around a bit inside but he is recovering well.

    Oh yes, and I’ve done a genetic survey for bowel cancer – meant filling in lots of family details, which took ages to do. That goes off the Oxford and then I’ll get a talk to the geneticist at my local hospital. My GP suggested all that – he’s very good. Might help with understanding the probabilities of my kids getting it – they could then get tests when they were older.

     

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  • December 6, 2016 /  Myeloma

    Unfortunately my levels have started to rise all of a sudden. Hard to know why – I’m hoping it’s not because of the Questran, which affects absorption. I don’t think it can be as I have it in the evening and the Revlimid in the morning. I happened to bump into my consultant when in for my Pentamidine inhalation and she suggested that I went straight back up to 25mg of Revlimid (was 15) and do a whole 4 weeks on top of the two I’ve just done – so no break. I’ll be doing a blood test though to check my counts are OK. So we’re hoping that this will kick me back down. The next step might be to add in Dex or maybe start a new drug like Pomalidomide or one of the other new ones. It’s annoying, but we’ve been here a few times before!

    I immediately started to feel more fatigued and I ache quite badly, with very sore skin too. I seem to have managed to have pulled muscles on either side of my back as well, possibly overdoing the myeloma exercises I started a while ago. So I’ve been taking the odd paracetamol, though it’s not very effective. Not allowed ibruprofen type medication.

    I had an issue with the Questran – my pharmacy gave me Questran light, which has aspartame in it instead of sucrose. Not only is it like drinking wallpaper paste in texture, but the wind is worse too, as is the acid. So eventually I’ve managed to get some regular, but I feel that I need to slowly use the old stuff up as it’s such a waste otherwise. I might do say a couple a week.

    We had an interesting day last week. I was asked by Leicester to go and speak to camera about my Ig subcut training etc for their patient experience unit. It went well – they have a proper studio. I wanted to make some key points about the training, especially the written info, as well as the more general issue that giving people IVIG could help the hospitals, as it might stop people with low immune systems from cancer treatment getting so many infections and taking up hospital beds.

    My brother has been diagnosed with bowel cancer and is due to have an op in early Jan. Looking at all the info, you realise just how different cancers are. But for all of us patients, being diagnosed will always be scary, regardless of the treatments etc.

    Anyway, off for a nap now I think! If I don’t manage another entry before Xmas, have a lovely time all of you xxx

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  • October 19, 2016 /  Myeloma

    Since I last wrote, I have begun to self-inject my immunoglobulin at home. I had to go to Leicester for 3 training sessions and a test. It wasn’t hard, although I still have to think about the procedures. I have a fridge full of immunoglobulin (IgG) and boxes of various needles and other bits and pieces. It takes maybe between 20 to 40 mins depending on whether I do one bottle or two. The actual injection is under the skin in my stomach and involves pushing 10ml liquid in over about 10 mins. This does cause funny bumps to come up but they do go away. One or two have caused bruises (probably poor technique), but mostly I’m just left with little pin pricks.

    So all that is good as it saves a morning in the hospital and it saves them patient time. I am a guinea pig for Leicester who have organised it and now want to make use of my experience to expand it. I am thinking about the printed info they give you, which I think could be improved.

    On the Questran – I have been messing about with the dose to try and get the best results. On my first week I went by the amount advised by the doctor, but this proved too much and I was constipated. I took  couple of days break to ‘clear the decks’ as it were and started again. Now I have more or less got it right and tinker slightly as needed. It’s impossible to get it spot on day after day as let’s face it, how many people’s bowels do that anyway? It depends on things like what you’re eating and drinking for a start. I’ve regained a bit of weight now I’m absorbing more nutrients. I have slightly rejigged when I take some meds, as Questran can affect them, so I take it before bed with nothing else. So far it doesn’t seem to have affected my disease levels, and we’ll take some readings of my vitamin levels every now and then to check they are still OK, as it can also reduce A, D and folates.

    I eventually got off my citalopram. It has meant I feel emotions more – I hadn’t realised how much it affected them. I also think it was covering my peripheral neuropathy a bit, as that seems a little worse. But it conflicted with several other drugs I take, so it’s best to be off it. If I feel a bit anxious or can’t sleep I can take half a diazepam – I do this perhaps once a week or two.

    I saw my Northampton consultant yesterday. My kappa levels apparently went up a little in August but then came down in September, so given that they can be affected by dips in health that’s OK. The last levels were 40.8 August and 32.3 Sept. September’s is pretty much where it’s been for a while. The measurement isn’t 100% accurate, but I don’t know what that means in plus or minus terms.  The top of a normal level is 19, so that’s pretty good. I have often been up into the 100s and when I was diagnosed in the 1000s! My other blood counts are OK, but they were still waiting for the kidney, liver, folates etc.

    I have decided to see if, with the help of the hospital, we can set up a support group for myeloma patients. I know Myeloma UK would help and I talked to someone about it at the hospital. It would only meet say once a month. More news on that later, after I’ve spoken to the relevant people at the hospital.

    The conference Bob and I went to was interesting. My N’ton and Leicester consultants were a bit horrified when I reported on what was said by some of the speakers. For example it was suggested that kappa/lambda ratios weren’t really that important unless there was renal involvement. This is controversial. However, mine have almost never been normal. What does that mean? Is it that an indication that even when I’m in remission, I’m not really? They also didn’t like allo transplants – too dangerous! This was roundly disputed by my Leicester consultant. I would agree with her – I don’t think there are any drugs which could have saved me from rising levels before mine and the unit has done lots of transplants safely. Many people get a good length of remission from them – I didn’t, but at least have put the brakes on. I think we have to recognise that different hospitals/consultants will take different views. Also it’s quite difficult to do large scale research on myeloma, given how individualistic it is. The samples are often quite small.

    We also heard about new drugs, which we may or may not have access to in the future, depending on govt funding. I asked quite a few questions and made some points. There was a very poor presentation by a nurse. However, I did pick up a few useful booklets and have started doing exercises from one of them.

    I’ll be updating some links etc soon, as the blog is a bit out of date atm. This organisation ran the conference (for those who don’t know it): https://www.myeloma.org.uk/

     

     

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  • 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 feeling  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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