https://forum.myeloma.org.uk/members/langdale/activity/ Activity feed for langdale. Sat, 11 Apr 2026 12:16:26 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 49b0d94015d2a2e195c49c8040c0c618 http://www.myeloma.org.uk/forums/topic/heart-and-skin-complications-with-autologous-sct/#post-127506 Mon, 04 Apr 2016 17:09:40 +0100 I had low blood pressure after sct 4 months ago so stopped my amlodipine which I have been taking for the high blood pressure but 2 months later it was back up again so have restarted and BP now normal. A couple of weeks ago had a very red rash on the inside of my right ankle but it disappeared after 3 days. Recently have occasionally got swollen…[Read more]

]]> d089eda6dcff3dced4a176e92266a354 http://www.myeloma.org.uk/forums/topic/neuropathy-after-valcade/#post-127505 Mon, 04 Apr 2016 17:02:25 +0100 Still have neuropathy in feet nearly a year after velcade/thalidomide and found amitryptiline helped. Can walk but slow which is all you need to get round a golf course, which 4 months after SCT and no myeloma cells in my biopsy will do.

]]> 138e69a2e4f363b9ce6f80e7db00c0a3 http://www.myeloma.org.uk/forums/topic/vision-problems/#post-127236 Wed, 16 Mar 2016 21:05:00 +0000 I have noticed that some times my long distance vision is much better and see better without glasses but at other times it is worse but not seriously so. I am three and a half months post transplant and my bone marrow biopsy showed no myeloma cells so just have 4 weekly Zometa. I am 66, played golf today for first time since October so so far so…[Read more]

]]> d7dc9803574161061b5845134e4a0e68 http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/4/#post-125505 Mon, 21 Dec 2015 18:02:28 +0000 Just had my SCT and came home 4 days ago after 18 days in hospital. Brushed teeth after every meal and gargled with stuff provided by the hospital. No real problems other than loss of appetite and diarrhoea in the last week (not helped by the poor quality food), which has now cleared up, so I think I got away lightly. Blood counts virtually back…[Read more]

]]> cdcba96212b603b7c91944550f69fbcb http://www.myeloma.org.uk/forums/topic/thalidomide-side-effects-how-long-do-they-last/#post-125035 Thu, 19 Nov 2015 12:23:09 +0000 The peripheral neuropathy is improving with hands almost normal and feet much improved so getting much better sleep etc. I noticed my latest comments on this issue were 5th September so its about 4 months since I had my last thalidomide. I am booked in to Pinderfields Hospital at Wakefield for 1st December to commence SCT, doctors strike…[Read more]

]]> 8f34ec81d6d7d639b35843ebacd7e9a9 http://www.myeloma.org.uk/forums/topic/criteria-for-remission/#post-124720 Sun, 25 Oct 2015 11:09:43 +0000 Dear Helen and Peter
<p style=”text-align: right;”>I was diagnosed February 2015 and my GP quoted 50% survival rates adding that he thought current estimates were better and that I was as likely to die with it as from it. The Myeloma UK news sheet from a few months ago quoted Myeloma survival rates had significantly improved quoting ONS…[Read more]

]]> d5ffd7aa64a5347aa19a92587506dc09 http://www.myeloma.org.uk/forums/topic/criteria-for-remission/#post-124717 Fri, 23 Oct 2015 17:06:34 +0100 Dear Peter, I suppose I must be in the Stringent complete response category as there were no detectable myeloma cells in my bone marrow either. regards David.

]]> 25dd1ac6f66037d8326f97656899ea52 http://www.myeloma.org.uk/forums/topic/criteria-for-remission/#post-124700 Wed, 21 Oct 2015 16:13:37 +0100 My consultant said I was in full remission with “normal” light chains and zero paraproteins, which suggests that light chains are normally encountered in blood. I have just had a stem cell harvest and waiting to go for my transplant. Hope this helps, Dave

]]> 3947c57e725a3e50bfd8d437d1a2f4ca http://www.myeloma.org.uk/forums/topic/thalidomide-side-effects-how-long-do-they-last/#post-123932 Sat, 05 Sep 2015 15:43:46 +0100 Thanks Bernard, Played 18 holes on my hilly course 2 days ago but with a buggy but it gets me out. I took 2 x10mg amitriptyline tablets last night and no drowsiness today so I think you are right, it just needs time. regards David.

]]> 5a04dc614fe54bf36d29f6ef87f14a57 http://www.myeloma.org.uk/forums/topic/thalidomide-side-effects-how-long-do-they-last/#post-123840 Tue, 01 Sep 2015 13:49:04 +0100 Thanks Mervyn, have ordered some online. I spoke to my GP today re the lack of effect of amitriptyline and his response was that there was nothing else available and this drug was very safe. he suggested doubling dose but the downside was the drowsiness. Decided to continue with the 10mg daily dose. regards dave

]]> d37d389ad8ac50274164033ad84f3f1a http://www.myeloma.org.uk/forums/topic/thalidomide-side-effects-how-long-do-they-last/#post-123828 Mon, 31 Aug 2015 14:54:55 +0100 Its 4 weeks since I stopped taking thalidomide as part of dexamethasone, velcade 4weekly cycle of 4 weeks, which has been very successful in combating the disease. The peripheral neuropathy is much the same with pins and needles, numbness, loss of strength in lower legs. My GP prescribed amitriptyline and have been taking it for 3 weeks with no…[Read more]

]]> 85f4f279ca1fe7310e1722ac4d7a5bcc http://www.myeloma.org.uk/forums/topic/dexamethasone-hoarse-voice/#post-123668 Wed, 19 Aug 2015 17:15:21 +0100 I get the same reaction after my dex days. It lasts a few days so not really a problem unless it happens on a  Thursday when I am a quizmaster without a mic at my local pub.

]]> ba72cf2dc85066e7eab31424eb78196a http://www.myeloma.org.uk/forums/topic/no-remission/page/3/#post-123527 Mon, 10 Aug 2015 12:13:02 +0100 Hi, I am 65 and  was diagnosed with MM in February 2015, after finding a bony lump on my sternum, initially by my GP and confirmed by my consultant after x-rays and bone marrow biopsy. After 4 cycles of DVT my paraproteins dropped from 55 to 0, light chains to normal, and biopsy result showed no detectable myeloma cells, which was excellent n…[Read more]

]]> be6b02e93263dc8686231afb7f295d2c https://forum.myeloma.org.uk/activity/p/37972/ Wed, 04 Mar 2015 13:20:28 +0000 0