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myeloma.org.uk ride.myeloma.org.uk leukaemiacare.org.uk haematologyclinicaltrials.co.uk labtestsonline.org.uk bcshguidelines.com gpnotebook.co.uk canceractive.com 

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sarah’s myeloma blog myeloma, a cancer caused by plasma cell growth in bone marrow daratumumab template letter dealing with c.difficile some thoughts on allogeneic (donor) transplants why a blog? myeloma background bone marrow test initial treatment stem cell collection hickman line eshaps and stem cell collection 2 hickman line removal cotswold break memorial: sarah ansell 4 comments 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: [email protected] 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 update march 2018 3 comments 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! tags: cyclophosphamide , panobinostat panobinostat, velcade and dex get my levels down 2 comments 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. tags: bowel problems , dexamethasone , heart issues , indigestion , panobinostat , problems walking , velcade panobinostat, velcade and dex 2 comments may 8, 2017 / myeloma well, i’ve had to move on. pom didn’t work ve

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  ARGS edweb.co.uk

  PORT 43

  TYPE domain

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for .uk domain names. This information and the .uk WHOIS are:
Copyright Nominet UK 1996 - 2017.
You may not access the .uk WHOIS or use any data from it except as permitted
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  NS2.XENCENTRICHOSTING.UK 193.35.57.245

  NS1.XENCENTRICHOSTING.UK 5.135.60.218

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