Myeloma Forum | LindaS | Activity https://forum.myeloma.org.uk/members/MrsL/activity/ Activity feed for LindaS. Sat, 11 Apr 2026 20:02:04 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 0d78cfd51d00d9296e129e8347094bf8 LindaS replied to the topic Myeloma X1 maintenance in the forum Side-effects http://www.myeloma.org.uk/forums/topic/myeloma-x1-maintenance/#post-121445 Thu, 26 Mar 2015 21:10:11 +0000 Hi Susie,

I was on the Myeloma XI trial, the incentive arm, and the RCD brought my pp down from 66 to 2. I then had the SCT in May 2014 which brought my pp down to 1 but I was disappointed that I was not selected for maintenance. In November my pp was up to 8 and relapse was confirmed. I will never know if maintenance would have prolonged…[Read more]

]]> aa4528234e27e31c48022cf2fbba0a4f LindaS replied to the topic Side effects of revlimid in the forum Side-effects http://www.myeloma.org.uk/forums/topic/side-effects-of-revlimid/#post-121266 Thu, 12 Mar 2015 18:26:15 +0000 Hi,
I was on the Myeloma XI trial last year, on Revlimid, Cyclophosphamide and Dexamethasone. The dex definitely made me grumpy and caused sleeping problems, I also had nights when I was very hot. I was also out of breath because of low red cell counts, not sure if this was a drug side effect or the Myeloma, but was given injections to help with…[Read more]

]]> 36b93a7daa175107cf6c2925c59000e9 LindaS replied to the topic Very ill, IgG kappa elevated, could it be myeloma? in the forum Newcomers http://www.myeloma.org.uk/forums/topic/very-ill-igg-kappa-elevated-could-it-be-myeloma/#post-120699 Sun, 08 Feb 2015 17:50:45 +0000 Sorry that should say the Myeloma infoline is excellent.

]]> 571751b1a3e63468d4bc3518ba3aaade LindaS replied to the topic Very ill, IgG kappa elevated, could it be myeloma? in the forum Newcomers http://www.myeloma.org.uk/forums/topic/very-ill-igg-kappa-elevated-could-it-be-myeloma/#post-120698 Sun, 08 Feb 2015 16:52:06 +0000 Hi Rosie,

Sorry that it sounds like you have symptoms of Myeloma. I have IgM Myeloma, at diagnosis my total IgM was 100 with a paraprotein level of 52. Any level of paraprotein is abnormal but obviously I am not an expert jut learning from my own experiences. The Myeloma infolding is excellent, there is no reason to be shy in talking to them,…[Read more]

]]> 59488c3dbf032fd5841f672060b0676c LindaS replied to the topic Allo graft (Allogeneic) stem cell transplant in the forum Treatment http://www.myeloma.org.uk/forums/topic/allo-graft-allogeneic-stem-cell-transplant/#post-120596 Sat, 31 Jan 2015 21:34:23 +0000 Hi Noel and Ann,
I had an auto transplant in May 2014 which gave me ‘very good partial remission’ but not for long, I had relapsed by November 2014 so I am now on a course of VCD. I have a meeting with the top man in Leeds this week and I think an allo transplant may be discussed as a future possibility as my consultant did mention it as an…[Read more]

]]> 71676c3df9891b0a03dcf70e5693b1f9 LindaS replied to the topic Paraprotein levels in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/paraprotein-levels/#post-120576 Thu, 29 Jan 2015 17:38:27 +0000 Hi,

I have IgM lambda Myeloma, at diagnosis in August 2013 my paraprotein level was 66 which was classed as high. It came down to 1 post SCT in July but I have now relapsed, so restarted treatment in December when it had risen to 8 and a bone marrow biopsy showed an increase from .29% to 38% in the cancer cells.

Linda

]]> a5afd9bce175375ec0833e1ab128ea91 LindaS replied to the topic holidays etc in the forum General http://www.myeloma.org.uk/forums/topic/holidays-etc/#post-120575 Thu, 29 Jan 2015 17:09:54 +0000 Hi Val,

We also have a holiday home in France and although I was told under no circumstances could I ski I could travel to France during my initial treatment of RCD as I only needed to visit hospital every 4 weeks and took tablets the other three weeks. So we managed a few trips during that six months but we went in the car rather than fly,…[Read more]

]]> a5d8c6fb10c0f7604a2203ffa62bba34 LindaS replied to the topic Relapsed and now has a loss of p53. Myeloma active and aggresive spread in the forum General http://www.myeloma.org.uk/forums/topic/relapsed-and-now-has-a-loss-of-p53-myeloma-active-and-aggresive-spread/#post-120574 Thu, 29 Jan 2015 16:54:22 +0000 Tina, I too only had a very short remission post SCT and it does get you down. But, I have started my next course of treatment, 6 to 8 cycles of VCD and this weeks results showed my paraprotein level has dropped slightly, so there is hope. Also I have an appointment with the top man at Leeds next week to talk about future options. I understand…[Read more]

]]> 97b3ae201c5c7e298d2be8bd2111d308 LindaS replied to the topic VTD apparently not working in the forum Treatment http://www.myeloma.org.uk/forums/topic/vtd-apparently-not-working/#post-120572 Thu, 29 Jan 2015 16:36:29 +0000 Hi Charlotte,

I have compression fractures at L2 and L4 as well as multiple lytic lesions in several other places, no-one has suggested treatment would ‘mend’ these. The measure they used to check treatment was working before my SCT was the paraprotein level. It came down from 66 to 2, classed as a very good partial response, after 6 cycles of…[Read more]

]]> 049414728a471d237d78c1a3fe221b7d LindaS replied to the topic Velcade in the forum General http://www.myeloma.org.uk/forums/topic/velcade-3/#post-120371 Sun, 18 Jan 2015 18:19:50 +0000 Vicky,

I am on VCD following first relapse in November. (First treatment had been RCD on the Myeloma XI trial, then SCT in May.) Unfortunately I got an infection during my first cycle so it had to be postponed until I was over the infection. I am now just finishing the second cycle. Have been told they won’t know how well it is working until end…[Read more]

]]> f2e0af0925ef54d4584700393b7f1cdf LindaS replied to the topic Velcade in the forum General http://www.myeloma.org.uk/forums/topic/velcade-3/#post-120371 Sun, 18 Jan 2015 18:19:50 +0000 Vicky,

I am on VCD following first relapse in November. (First treatment had been RCD on the Myeloma XI trial, then SCT in May.) Unfortunately I got an infection during my first cycle so it had to be postponed until I was over the infection. I am now just finishing the second cycle. Have been told they won’t know how well it is working until end…[Read more]

]]> d112ea6a85c2138277c1c606697b18c5 LindaS replied to the topic Paraproteins at a new low! in the forum Treatment http://www.myeloma.org.uk/forums/topic/paraproteins-at-a-new-low/#post-120370 Sun, 18 Jan 2015 17:54:08 +0000 Hi Andy,

That is great news and encouraging for the rest of us. If you get the go ahead for the SCT I hope you are one of the lucky ones and get a long period of remission.

Linda

]]> 2a75a443cf591bc977bb717974de1510 LindaS replied to the topic New to Forum in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-forum-3/#post-120263 Mon, 12 Jan 2015 19:26:35 +0000 Anne,

Unfortunately my first cycle of VCD was interrupted as I had an unrelated infection but last week I restarted and I am half way through the second cycle. I haven’t quite got used to the ups and downs of the different days yet. The dexamethasone causes sleeping problems but I haven’t had any bad nausea from the cyclophosphamide.
My main…[Read more]

]]> 33883c4b16b0bb635ee6604f16f2f2dc LindaS replied to the topic New to Forum in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-forum-3/#post-120220 Wed, 07 Jan 2015 19:19:41 +0000 Hi, so sorry you seem to be in a similar situation as myself. I was diagnosed August 2013 and after 6 cycles of RCD on the Myeloma XI trial I had SCT in May. My 100 day check showed a low level bone marrow infiltration and further tests in October/November confirmed relapse, with the bone marrow infiltration rising to 38%. I was offered the MUK5…[Read more]

]]> 9c7d47253bd75a82fd26af5d87e48196 LindaS replied to the topic its back in the forum General http://www.myeloma.org.uk/forums/topic/its-back-2/#post-120181 Tue, 06 Jan 2015 21:27:08 +0000 Hi, Sorry your husband as relapsed. I relapsed in November following a stem cell transplant in May. I also had Revlimid for my initial treatment and have now started Velcade. It seems to be the standard treatment at first relapse but I was also offered the MUK5 trial which compares Velcade with a newer drug which may have fewer side effects. I…[Read more]

]]> 0a2f6a95ed93d80655eccaf69f3dc49e LindaS replied to the topic First relapse treatment options in the forum Treatment http://www.myeloma.org.uk/forums/topic/first-relapse-treatment-options/#post-119947 Thu, 11 Dec 2014 19:40:59 +0000 Thanks Andy,
You are right SCT does work well for many people but some, like you, don’t get to it and others, like me, get a very short remission. I still think it was worth giving it a go and now I just have to move on to the next stage. I saw the consultant today and was offered either to start velcade (VCD) straight away or to be referred to…[Read more]

]]> cc5338984d9ffe90be01c305367c33c8 LindaS replied to the topic Cyclo Prime in the forum Treatment http://www.myeloma.org.uk/forums/topic/cyclo-prime/#post-119834 Thu, 04 Dec 2014 17:39:07 +0000 Hi Andrea,

I had my cyclophosphamide prime in March, I expected to be in hospital just one night but unfortunately got an infection so had to stay in for three days. I think the infection was unrelated to the cyclophosphamide. I had been warned my hair could fall out and it did but not straight away, it was over two weeks later. The stem cell…[Read more]

]]> c8b05118d80ef34664452c0e532ead49 LindaS replied to the topic First relapse treatment options in the forum Treatment http://www.myeloma.org.uk/forums/topic/first-relapse-treatment-options/#post-119833 Thu, 04 Dec 2014 16:54:09 +0000 Thanks for your responses. I will be seeing the consultant next Thursday and will find out then exactly what the MDT have recommended. I doubt they will suggest, nor would I want, a second SCT as the first only gave me two months partial remission after the 100 day check up/recovery period.

]]> 88c6355a13272e5376f87e2ae2ef25de LindaS replied to the topic Another agonising wait... in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-agonising-wait/#post-119782 Mon, 01 Dec 2014 18:42:04 +0000 After a couple of months in remission I have just relapsed and my pp level is now just 8 but it looks like they will start treatment very soon, I find out next week. It isn’t just the pp level but if it is increasing and if it is causing other problems that seem to trigger treatment.
If you are seeing Prof Cook at Leeds you are seeing one of the best.

]]> a22dc73cd4b38ee5797b5dbcb2e48bfc LindaS replied to the topic Liquids tasting horrible after stem cell therapy in the forum Side-effects http://www.myeloma.org.uk/forums/topic/liquids-tasting-horrible-after-stem-cell-therapy/#post-119730 Thu, 27 Nov 2014 18:03:58 +0000 Hi, I think this is a common problem, even water tasted horrible to me so drinking the recommended 2-3 litres a day was difficult. I found Ribena the best, the original version not the sugar free. My taste did return to normal after a few weeks.

]]> 0ff5c56d5b352bbda18099010133de95 LindaS started the topic First relapse treatment options in the forum Treatment http://www.myeloma.org.uk/forums/topic/first-relapse-treatment-options/ Thu, 27 Nov 2014 17:57:08 +0000 Hi all,
I was diagnosed in August 2013, had 6 cycles of Revlimid, cyclophosamide and dexamethasone on the Myeloma XI trial and then SCT in May which put me into VGPR, my August check up showed my PP level rising from 1 to 2 and then my October check up showed a jump from 2 to 6, this was a big shock as I am feeling very well, I had just come back…[Read more]

]]> 2505f4c43a6d9bf05040d18c2c225470 LindaS replied to the topic bone marrow biopsy in the forum General http://www.myeloma.org.uk/forums/topic/bone-marrow-biopsy-2/#post-119726 Thu, 27 Nov 2014 17:01:23 +0000 Hi, I have had 4 BMBs, the first in August 2013 to confirm diagnosis, the second in March after RCD induction treatment, the third in August 100 days post-stem cell transplant and the last this month to confirm relapse. They were given at my local hospital under local anaesthetic, the first 3 were given by a specialist nurse with another nurse…[Read more]

]]> 176df5aa4668f37a4b66ccc1afbc8d0b LindaS replied to the topic Maintenance treatment post SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/maintenance-treatment-post-sct/#post-118174 Wed, 17 Sep 2014 17:11:29 +0100 Thanks for the replies.

Rebecca, I have looked at the posts on being down post SCT and they were very useful. Good to know I am not the only one who has felt like this and hopefully I too will be able to enjoy getting on with life soon.

Linda

]]> c0a8ed38a93542fa7eb97e341a72388c LindaSaxton started the topic Maintenance treatment post SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/maintenance-treatment-post-sct/ Tue, 16 Sep 2014 17:00:29 +0100 Hi, This site has been very useful during the past year but this is my first post, hope it works ok.

I was diagnosed with IgM lambda Myeloma in August 2013 (aged 55). The diagnosis followed months of GP visits with back ache which we eventually found out was the result of 2 compression fractures in my spine. We should also have spotted other…[Read more]

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