Myeloma Forum | Jane-wrench | Activity https://forum.myeloma.org.uk/members/jane-wrench/activity/ Activity feed for Jane-wrench. Mon, 06 Apr 2026 22:47:14 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 f985215e836d297b1a6e066e3116180a Jane-wrench replied to the topic Just a little update on my progress. in the forum General http://www.myeloma.org.uk/forums/topic/just-a-little-update-on-my-progress/#post-124773 Thu, 29 Oct 2015 19:50:03 +0000 HI Andy – thank goodness you are getting back to normal – we missed you!

Jane

]]> 5eb7b32c0cd008f05ad17a4f2a4b755e Jane-wrench replied to the topic Vigilance - temperature and feeling unwell in the forum Treatment http://www.myeloma.org.uk/forums/topic/vigilance-temperature-and-feeling-unwell/#post-124545 Wed, 07 Oct 2015 20:24:55 +0100 Welcome back Andy – thank goodness you are ok – we’ve all been worried about you xx

jane xx

]]> 9e6c1a78cc71c07fdfca4eab0c24ba22 Jane-wrench replied to the topic In remission in the forum General http://www.myeloma.org.uk/forums/topic/in-remission-2/#post-124521 Mon, 05 Oct 2015 22:04:23 +0100 Thanks Jan.  My first SCT was in 1996 when my light chains were 5,500- and I had 5 years of partial stable remission- then another SCT in 2001 and my light chains were ‘normal’ for years, but gradually but steadly increased from 2010 and I started velcade with cyclophosphamide and dex in 2012 and later thalidomide replaced cyclophosphamide. The…[Read more]

]]> fbe2e39ffd87fea692cbc837960439ca Jane-wrench replied to the topic In remission in the forum General http://www.myeloma.org.uk/forums/topic/in-remission-2/#post-124450 Wed, 30 Sep 2015 19:11:26 +0100 Hi Jan,

what level did your free light chains reach before they said you needed treatment again? Ive had Amyloidosis as well as myeloma for years now – nearly twenty in fact – had 2 stem cell transplants but last time it came back in 2012 had velcade mixed with various other drugs which got me into remission again  without SCT – but it looks…[Read more]

]]> e6ec97bab4210fb3e3c0dd492a9e5227 jane-wrench changed their profile picture https://forum.myeloma.org.uk/activity/p/39821/ Sun, 12 Jul 2015 13:12:25 +0100 0 25f4a74a4cfd73fb0db126b85e778488 jane-wrench changed their profile picture https://forum.myeloma.org.uk/activity/p/39820/ Sun, 12 Jul 2015 13:10:24 +0100 0 89f3249d6e4bb9aba4a62008f246f02c Jane-wrench replied to the topic Worried in the forum General http://www.myeloma.org.uk/forums/topic/worried/page/3/#post-123036 Sun, 12 Jul 2015 12:29:27 +0100 What lovely news! Congratulations! Very uplifting to read xx

 

]]> 005ef5b111543a7b550a5a2abdfba9f9 Jane-wrench replied to the topic Welcome to the new AL amyloidosis section of the Discussion Forum in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/welcome-to-the-new-al-amyloidosis-section-of-the-discussion-forum/#post-121549 Sun, 05 Apr 2015 10:44:47 +0100 Hi there – I have both myeloma and Amyloidosis – both diagnosed in 1996- I’ve had 2 stem cell transplants – one in 1996 and one in 2001- and then velcade with dexamethosone and cyclophosphamide from April 2012 until last year- in remission again now and leading a perfectly normal drug free life – I’m treated for the myeloma at the Marsden and for…[Read more]

]]> 31fa050174480705e4382f3e54c55675 Jane-wrench replied to the topic SCT in the forum General http://www.myeloma.org.uk/forums/topic/sct-3/#post-120933 Sun, 22 Feb 2015 23:09:40 +0000 Hi again-that SCT put me into partial stable remission – I have amyloidosis too – and 5 years later was in a lot of pain – and although the free light chains hadn’t gone up, I  had a second SCT in 2001- not sure if it was really necessary but it put me into full remission which lasted for 10 years – then the light chains started to increase…[Read more]

]]> 9654a9a92b1432ee9cfced1c1a3a54b8 Jane-wrench replied to the topic SCT in the forum General http://www.myeloma.org.uk/forums/topic/sct-3/#post-120927 Sun, 22 Feb 2015 17:38:08 +0000 Hi there – when I had my first SCT in 1996 my kappa free light chains were 5500! Way above normal!

 

]]> d2a280df61939d27058d81035a1cf00e Jane-wrench replied to the topic Myeloma Specialists - London/South East in the forum General http://www.myeloma.org.uk/forums/topic/myeloma-specialists-londonsouth-east/#post-120162 Sun, 04 Jan 2015 19:35:15 +0000 Hi there- I was originally diagnosed and treated at my local Hospital  in Bromley but was soon referred to the Marsden in Sutton – and I’ve been treated there for the last 18 years – 2 stem cell transplants there – first gave me 5years remission and second gave me 10 years.  Recently had further treatment with velcade dexamethasone and t…[Read more]

]]> f01f02e47ddba82fa5427418ec40f989 Jane-wrench replied to the topic scared newcomer in the forum Newcomers http://www.myeloma.org.uk/forums/topic/scared-newcomer/page/2/#post-116471 Tue, 08 Jul 2014 10:23:42 +0100 Hi there Nikki – and other newcomers- just to give you hope- I was diagnosed at the age of 45 with both myeloma and Amyloidosis – but that was 18 years ago! In those days the prognosis was not good – median survival of 2 years they said – but I’m still here! Had a stem cell transplant in 1996 – 5 years remission – then another in 2001- with over…[Read more]

]]> 4dea40cd983ec66156e7b0a728a22358 Jane-wrench replied to the topic My Remission is over!! in the forum General http://www.myeloma.org.uk/forums/topic/my-remission-is-over/page/2/#post-114337 Tue, 08 Apr 2014 07:34:49 +0100 Hi Mandy,

so sorry to hear your news – but I must re iterate what others have said – dont give up! And you really cannot always  go with what the statistics tell us – there are always exceptions- myeloma is such a complicated disease and everyone seems to have different stories and reactions.  I can only give you my personal experience – but w…[Read more]

]]> 7eb7208e1ced75e62ba1da9a6da28cb7 Jane-wrench replied to the topic Steroids: effectiveness and side-effects in the forum Treatment http://www.myeloma.org.uk/forums/topic/steroids-effectiveness-and-side-effects/page/2/#post-114263 Fri, 04 Apr 2014 09:57:57 +0100 Dex seems to affect different people in different ways – but I think insomnia is common to all! When I started my velcade, cyclophosphamide and dex treatment it was twice a week velcade, so four times a week dex- and i got very little sleep! Also hyperactive on dex days and into a slump in between. It was reduced to once a week, then once a…[Read more]

]]> 4649dc1da54f9e3e99081f952e622410 Jane-wrench replied to the topic My Stem Cell Transplant Journey in the forum Treatment http://www.myeloma.org.uk/forums/topic/my-stem-cell-transplant-journey/#post-114205 Wed, 02 Apr 2014 07:12:30 +0100 Hi Keith

i was in the Marsden for both my SCTs and when my mouth was sore they gave me ice pops to suck on which were very soothing!

jane x

]]> 136b1d79aab52587f371da658dc320f3 Jane-wrench replied to the topic Hair re-growth after SCT? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/hair-re-growth-after-sct/#post-114142 Mon, 31 Mar 2014 10:28:55 +0100 Hi ladies – yes I remember how upsetting the bald head was when I had my transplants – it’s the last straw after everything else- although you save a fortune on shampoo! I’ve had two SCTs and both times my head was shaved in hospital once the hair started to fall out.  The first time I had the transplant in the June and hated the baldness and was…[Read more]

]]> 675fded489dd80c9bfdc0e662b539297 Jane-wrench started the topic Velcade treatment in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-treatment-2/ Tue, 18 Mar 2014 20:47:29 +0000 Hi there – I’ve had myeloma and Amyloidosis for 18 years now – had one SCT in 1996 and one in 2001- and got 10 years remission from the last one – I know I’ve been very lucky – but when the free light chains started rising steeply  I had to start treatment again – so in April 2012 I started CVD – ostensibly for 6/8 cycles. It worked well at the…[Read more]

]]> 1d4728fc5fc181a7469382986c44b152 Jane-wrench replied to the topic Pomi-T supplement in the forum Treatment http://www.myeloma.org.uk/forums/topic/pomi-t-supplement/#post-113349 Thu, 27 Feb 2014 21:21:15 +0000 I’m on velcade so couldn’t try it anyway but there are a lot of ‘alternative’ remedies out there and some doctors are more open to them than others. My doctor at the Marsden prescribes me vitamin B and folic acid to help with the PN – and a couple of years ago when I had terrible shoulder pain he organised acupuncture for me. On the other hand, he…[Read more]

]]> 11f8503d3ea16dbe5c56e24add01997a Jane-wrench replied to the topic Shingles in the forum General http://www.myeloma.org.uk/forums/topic/shingles-2/#post-113329 Wed, 26 Feb 2014 20:38:54 +0000 Hi there – I also had bad attack of shingles a few years ago and was immediately given aciclovir 3times a day – an antiviral medication – and now I am on velcade, I have to take it again every day as velcade makes one susceptible to shingles.

jane x

]]> 9c8868fb96c71c5d228d1c648fc36bcd Jane-wrench replied to the topic New to forum in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-forum-2/#post-113306 Wed, 26 Feb 2014 09:27:25 +0000 Hi again to you all and thanks for your comments.  I find there is always something on the horizon that I have to work towards and try to be ok for! As I’ve said my big goal at the moment is my sons wedding in may – in Slovenia! Where they fell in love apparently! But before I have to be fit for the hen weekend in Barcelona! Surrounded by young…[Read more]

]]> b7fcc7a6ffd01644e9f2ca540df88137 Jane-wrench replied to the topic New to forum in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-forum-2/#post-113305 Wed, 26 Feb 2014 08:33:44 +0000 Hi coasti, yes it was a strange time the second time. In hindsight, I probably didn’t need the second SCT. I had had 5 years of partial remission and was very happy with it, no symptoms. But I developed a terrible pain in my shoulder which I thought was a trapped nerve but was referred back to Marsden who put me on carbamazepine – a nerve pain…[Read more]

]]> 03840c2892bc07c915f6147f9691c0fe Jane-wrench started the topic New to forum in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-forum-2/ Mon, 24 Feb 2014 11:12:04 +0000 Hi there – I’m new to the forum – but sadly not new to myeloma! I was diagnosed with myeloma and amyloidosis in 1996 at the age of 45- but thought it might give you newly diagnosed people hope as I’m still here 18 years later! I’ve had 2 stem cell transplants, one gave me 5 yrs partial remission and the next gave me 10 years full remission – I’d…[Read more]

]]> dabca3012cd5398d7e203a7da8bb9b16 jane-wrench changed their profile picture https://forum.myeloma.org.uk/activity/p/1264/ Sat, 22 Feb 2014 18:24:35 +0000 1