Thanks Pips. Sadly she died this morning at 2:45. I didn’t get to see her.
I’ll post for the whole group to see.
Don’t be too excited for more blog posts as that would mean that I’ve relapsed and/or back in treatment.
Best wishes
Jet
Hi Clare
I've not read everyone's responses, but a few, including both of Dai's.
I had an awful time going through my auto SCT (almost two years ago). Having said that, I completely agree with Dai that even though it may be horrid to go through, it really isn't terrifying, just a bit miserable.
In my case, a relapse came very quickly – 5 months, so the SCT was deemed to have failed. However, I don't think that an SCT will bring on an earlier relapse, so I think I would have relapsed anyway. The doctors who ARE proponents of SCT reckon that it increases the chances of a longer remission, but we are all different and there's no way of knowing what will work best for any of us, including your mum. As research continues, they hope to discover markers that indicate which treatments would be best for individual people, but we're not there yet.
I want to add one thing, which is that as your mum is 67, she is at the slightly older end of the spectrum for being considered for an SCT. That is a good thing because it means that they deem her to be young/healthy enough and a good candidate to benefit from it. But it also means that she might not be considered for it in a few years time…
I wish you and her the best of luck and am sure you will come to a decision that feels right. That's the best you can do.
Jet
Great!!! Congratulations!
I never made it to one year after my auto transplant. I only got five months before relapsing.
But on 16 May, I will celebrate my one year anniversary for the donor transplant I had after secondary treatment.
Enjoy Australia! Enjoy everything!
Jet
Thanks Tom, for your encouragement!
Hi Helen
Thanks for your response. I'm not particularly daunted about speaking in front of an audience and I already know the venue. Im trying to decide between using slides or making it more informal. If I do use slides, I think I need to make it a bit funny – photos and so on, not just information. There'll be plenty of information on the day, so I'm aiming for a light relief angle.
Jet
I tried World First, but they've changed their underwriter since I last tried them and it was a real palaver and not so reasonable. But I did get a good quote, that included not just MM, but also depression, chronic kidney failure and Graft versus Host Disease, from Free Spirit: http://www.freespirittravelinsurance.com/
It's certainly worth shopping around.
Good luck!
Jet
Hi Emma
I was also in hospital with kidney failure, which led to my diagnosis (Feb 2011). Literally within a couple of hours of receiving the diagnosis, they put me on Dex. I didn't start the other medication (Revlimid and Cyclophosphamide) for a few days, when I chose to go on the Myeloma XI trial. When I queried why they started the Dex so soon, they said that with MM, they need to act quickly, which is different to some cancers, when you have time to consider different options. The Dex gets to work on the cancer straight away.
I don't know what your mum's consultant and specialist nurse are like, but I have always been able to ask lots of questions to better understand what's happening and make decisions about treatment. Please just ask and ask.
Best wishes
Jet
Hi Karen
All the consultants and registrars at Nottingham work very closely together, so it doesn't matter much who you see, but you can express a preference. I generally aim not to see Prof. Russell as I find he can be quite dismissive and abrupt, whereas Jenny Byrne and Cathy Williams are much warmer and will gladly spend time answering questions. So do ask and make use of the specialist nurse, Sarah, too. I think the Prof likes to see all the out-of-towners to start with as he is ultimately responsible for them as Nottingham is the hub hospital for the area, but it may be that afterwards you'll see other consultants.
It's unlikely that I'll see you at clinic, as I now go to the Transplant clinic, which is on Thursdays, not Mondays. This is for people who go through a donor transplant, otherwise you'll be at the Myeloma clinic.
I have nothing but good words to say about the whole team, so you're in good hands. Nottingham Haematology unit is very well respected and I think it has some sort of beacon status for treatment.
Have they suggested any possible dates for you to have the collection of stem cells or transplant? If you want to know more about the SCT process, you're welcome to read my blog, but please don't let it scare you too much. Some people go through the SCT with barely a ripple.
Good luck!
Jet
P.S. This thread is getting quite long and hard to follow, so if you'd like to contact me again you're very welcome, but it might be easier if you comment on my blog.
Although I barely knew Paul, his death has shocked me the most, for the same reasons you mention in your blog. Not wanting to steal your thunder, Wendy, but I've also just published a blog update on the subject of dying: http://jetblackliving.wordpress.com/2012/11/20/the-other-side-of-the-coin/. Thanks for reading. Comments are welcome.
Hi Colin
I understand the confusion. In the first stages, everything's confusing as it's all so new.
Briefly, myeloma is either heavy chain or light chain. If they're talking Bence Jones and kappa/lambda values, then you have light chain. The treatment's the same, but the tests to check on response and progression of the disease are slightly different.
As Gill says above, the best people to ask are your consultant or specialist nurse. I'd say that for any personal medical questions.
Having said that, a huge jump in your light chain numbers is not a good sign, particularly if the ratio between the kappa and lambda values increases. I wrote about my own test results last year here, which may help you understand a bit better: http://jetblackliving.wordpress.com/2011/04/20/good-results/, which includes a link to a booklet that Myeloma UK publish: http://www.myeloma.org.uk/files/4213/4331/5775/Myeloma_UK_Serum_Free_Light_Chain_Infoguide_July_2012.pdf
And a slightly more technical/clarifying update: http://jetblackliving.wordpress.com/2011/04/21/further-clarity-for-the-geeks-out-there/
It's not an easy journey, but it is very interesting and in some ways quite inspiring and liberating, at the times when you're not feeling like s**t.
I wish you well.
Good luck!
Jet
I've just spoken with my GP and apparently the vaccine for shingles is not yet widely available. Even if it was, it is a live vaccine, so it's too risky to give to transplantees. We would be much more likely to suffer the disease from the vaccine itself, than be immunised against it. Perfect irony, eh?!
Hi Eve
I'm not off radar, I just don't come to this site very often, but I do blog fairly regularly, so if you want to know how I'm doing, you're welcome to read it: jetblackliving.wordpress.com.
And yes, you're right, after both types of SCT, you need to renew childhood vaccinations. But your haematologist and GP should advise you.
I didn't intentionally have a back to back SCT. I was in CR after the auto, but sadly it only lasted about 5 months, so I had to re-commence treatment in Feb this year, which was followed by a donor transplant, from which I am now recovering.
Thanks for your comments and good wishes.
Same to you.
Jet
Hi Lorna
Thanks for adding Emma's blog to the list. I've checked it out and made contact with her. It's very well written, don't you think? How amazing and how awful to have myeloma so very young. 49 was way too young for me and I guess for Mike too in his mid-fifties.
Gill
My heart goes out to you. Grief is so painful. My neighbour's husband died in March this year and we both look out for each other and ask how it's going – grief and managing alone versus cancer and its treatment – fortunately we both feel able to say how it is, good days and bad days. She has experienced the same as you though, with people avoiding the subject of death and grief, I think because they can't deal, or don't want to deal with the pain they will experience when you express yours.
One friend who went off radar with me soon after I told her about my diagnosis came up to me the other day in town and apologised. She said that her partner of 25 years had left her and that she couldn't face my vulnerability on top of her own.
The other thing is that often people are scared to broach the subject, because they think it might upset you, not understanding that the upset is there whether you express it or not and not realising that you actually WANT to talk about how you feel and about Stephen. So it may be that you need to take the lead, maybe you need to express your feelings as a way to allow them to talk about it and to talk about Stephen. You may be happily surprised by the outcome.
And as everyone else has said, it will take time and crying is good. I wish you well.
Jet
Hi Pat
When I got my blue badge, it was from the local council, not from DVLA. It was very straightforward as I recall.
I don't think this is the way I did it, but I've just found the direct.gov website for applying: https://www.gov.uk/apply-blue-badge
Good luck! It has made such a difference for me, being able to park near places and often for free.
Jet
