• September 12, 2018 /  Uncategorized

    This is Bob Ansell, Sarah’s husband.

    It is with great sadness that I write to tell you all of the Sarah’s death. After nearly 11 years with multiple myeloma she finally ran out of options. She died peacefully with me at her side, in our bed, on August 13th.

    While the funeral was family-only affair, I have arranged a memorial for her. I would be delighted if readers of the blog who felt they knew her could attend.

    This was one of her favourite photos. It was taken a few months after her last stem cell transplant, when she temporarily grew frizzy hair.

    During her life she contributed to improving the lives of everyone she came into contact with. She will be remembered as a wife, a companion, a friend, a mother, a campaigner and political activist. Sarah was cremated on 28th August. This memorial event is to celebrate her life, her achievements and her impact on those around her.

    The venue, Northampton Working Mens Club is in Sheep Street, Northampton, NN1 2LZ.

    It is 2mins walk from Mayorhold Multi-Storey Car Park (Lady’s Lane, NN1 3AH) and Northampton Bus Station, and 15mins walk from Northampton Railway Station.

    A buffet is provided from 12:30pm. Speeches and contributions are welcome from all and will begin at 1pm.

    Please let me know if you are coming, either through this event or privately, so that I can cater for the correct number.

    I can be contacted on 0750 22 55 208 or by email: bob@ansell.me.uk

    I would be grateful if you could share these details with others that knew Sarah and may wish to attend, particularly those from with whom we may have lost contact

  • March 13, 2018 /  Myeloma, Uncategorized

    It’s been a while since I updated, but various people have wanted to look at my blog, which has given me an incentive. It took me ages to sign in as I’d forgotten the details! It will be short I’m afraid as I’m quite busy, but I will try to update a bit more frequently.

    I got through 8 cycles of Panobinostat, but having managed to get my levels down, they then started to climb again and I was feeling very ropey. I had a long discussion with my consultant. As Daratumumab, which would be a good bet, was unavailable then (and now I don’t fit the criteria), the only options left to me were older drugs. We looked at Cyclophosphamide, Melphalan and Bendamustine. In the end, for various reasons, we went for Cyclo and Dex at least to start with, without Thalidomide, which would usually be take as part of the CTD regime. I have peripheral neuropathy and we didn’t want to make it worse. I started Cyclo in early November. In terms of disease levels it has not worked very well, but kept them stable mostly around the 1000 to 1300 kappa range until the last test. I have found the regime very hard work this time, which I wasn’t expecting, but it is likely that the Panobinostat had clobbered me and I went straight into Cyclo.

    Unfortunately my blood counts have been affected and in Feb I had a week off and then again I have had two weeks off since the beginning of March. My platelets went down to 20 and my haemoglobin has been falling despite the time off and the fact I self-inject Eprex. Yesterday I saw my consultant and my kappas have gone up to over 1800, my platelets have revived a bit to 36, but my haemoglobins have sunk further to 73. Not surprisingly I have major fatigue. So things are going a bit pear-shaped atm.

    We decided to try adding in a small dose of thalidomide, crossing our fingers that my bloods and neuropathy won’t be too badly affected. They will give me transfusions if necessary.

    If this regime doesn’t work we may try one of the other drug regimes. But the blood counts may be affected by those and it could be the disease kicking in anyway.

    All this is complicated by the fact I need a colonoscopy – I had a recall from the standard tests. My last one was cancelled due to my low platelets, as I might have bled more if they had to remove polyps. So it has been rescheduled and I may have a transfusion beforehand, although that will be fun if I have to be on a drip while dashing too and fro to the loo from the laxatives!

    Since I had a heart issue on cycle one of my Pano, I have been working through various heart tests (eg ultrasound, ECG) and most recently have had a heart MRI. The cardiologist doesn’t think I have any issues, but it will rule out anything like amyloid deposits.

    The other thing I have been doing is sorting out end of life care details, redoing wills etc. It’s not pleasant thinking about these things, but given my current situation, which could deteriorate, it’s good to have it all down on paper.

    So, life’s a bit tough atm, but one can only hope that we can settle on a regime which keeps me going. As always it’s important to live day to day and spring will hopefully be on its way soon!

     

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  • August 2, 2017 /  Myeloma

    Well it’s been a real struggle. Apart from the transplants this may have been one of the toughest regimes I’ve been on. But it is working and so it gives me the oomph to get through it.

    My results have been as follows. I started on about kappa 2,500. After round one the levels went down to 147!! However I had a blip on my ECG and cycle two was just Velcade and Dex, while I had lots of ECGs, an Echocardiogram and a 24 heart tracker. The problem didn’t reoccur, but they did discover that I had mild aortic insufficiency, which means a faulty valve. I’m hoping to see a cardiologist about that. It may not be a result of the myeloma, as it can be caused by a whole variety of things.

    However the second reading still showed a reduction to 103, either due to the Velcade or maybe the Pano was still working. Before I started round 2 my consultant reduced my Pano by 5mg and halved my Dex to 40 (10 x 4) a week.

    After this my levels went down to 70 and then after cycle 4 to 37. Normal levels are 0 to 19 so we are doing well. My kappa/lambda ratios are also going down, but they have almost never been normal, so I’m not expecting them to normalise yet.

    The side effects have been severe. The worst has been the effect on walking. I can’t even walk round the little lake at the bottom of our hill now, my legs are shaky and my feet and legs are puffy. We have used a wheelchair a couple of times on outings. We’re not sure exactly which drug is causing it, as Dex does weaken the muscles, but I have never experienced it that badly. It is likely that the Velcade is mostly to blame, so that dose has been reduced for round 5.

    The other issues are fatigue, digestive issues, especially very bad indigestion, enormous bloating and loose bowels, which I have been controlling relatively well with medication. I retain a lot of fluid and my weight has really gone up, although Dex also wants me to eat more. Sometimes I feel like a Michelin man with bright pink cheeks from the Dex.

    I don’t really feel much better on weeks off, as I get the usual Dex withdrawal, but we are going to try to do more, as this is also very tough for my husband Bob, as life with an chronic invalid is very boring and it’s good for me to make an effort. I have been trying to see friends and have the odd lunch out.

    I know others on Pano have also struggled, so good luck with it all and please do get in touch if you want to share experiences.

     

     

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  • 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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