Myeloma Forum | admin | Activity https://forum.myeloma.org.uk/members/admin/activity/ Activity feed for admin. Sun, 05 Apr 2026 15:01:06 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 040c4939c83be240542d9be0536ec14c admin changed their profile picture https://forum.myeloma.org.uk/activity/p/504/ Thu, 09 Jan 2014 14:17:15 +0000 0 ef14eefb4fbaced85fda37d4ca22f942 admin changed their profile picture https://forum.myeloma.org.uk/activity/p/186/ Wed, 11 Dec 2013 23:26:22 +0000 0 45d98013335df719c368abc136d1a75a admin changed their profile picture https://forum.myeloma.org.uk/activity/p/46/ Mon, 02 Dec 2013 17:42:31 +0000 0 21fef6b546eb10de0039c86e35c9d1a3 admin changed their profile picture https://forum.myeloma.org.uk/activity/p/45/ Mon, 02 Dec 2013 17:39:50 +0000 0 9ce82a59fab261af8f68146588606b9d admin posted an update in the group Main Group: hi all https://forum.myeloma.org.uk/activity/p/7/ Wed, 29 May 2013 09:26:39 +0100 hi all

]]> 0 95155f58fec3e72f247a52413166744b admin created the group Main Group https://forum.myeloma.org.uk/activity/p/6/ Wed, 29 May 2013 09:21:55 +0100 0 ed8cd2a61ffddaf9877ae024cbcd3ce0 admin replied to the topic Here we go again in the forum Newcomers http://www.myeloma.org.uk/forums/topic/here-we-go-again#post-87634 Fri, 24 May 2013 12:37:42 +0100 .

]]> df65e99c2d3d84c223f5c762937b25d2 admin replied to the topic to SCT or Not to SCT in the forum General http://www.myeloma.org.uk/forums/topic/to-sct-or-not-to-sct#post-95155 Mon, 29 Apr 2013 23:49:05 +0100 Hi Clare

I have decided not to have a SCT just yet. I have been in Complete response to CTD for 2 years now – no PPs and light chains in normal range. I do have some stem cells on ice, but I was only able to harvest enough for one transplant.

Good luck to you and your mum whatever happens.

Tracey

]]> b1bd6008d01d7dfd556fadb97e06b951 admin replied to the topic Aggressive myloema in younger patients? in the forum General http://www.myeloma.org.uk/forums/topic/aggressive-myloema-in-younger-patients#post-94762 Thu, 04 Apr 2013 21:13:44 +0100 Hi Rebecca

I was diagnosed just over 2 years ago, aged 42. My consultant recently told me that 'generally' as 'with all cancers', the younger you are, the more aggressive it tends to be. In my case, I had 6 cycles of CTD and achieved a complete response early on and have remained so ever since. I've had my stem cells harvested, but I am…[Read more]

]]> 98d92c644676c3809714d3ed999e538e admin replied to the topic Hello again to all in the forum Treatment http://www.myeloma.org.uk/forums/topic/hello-again-to-all#post-100365 Fri, 24 Aug 2012 22:29:30 +0100 Hi Jacqui

I don't post much on here. But, I'm on my own tonight and have had a glass or two of wine and in my maudlin moments, often look on the site. Having done so tonight, I came across your post. I too have IgA myeloma. Actually, I have IgA lambda light chain myeloma. I also have Amyloidosis. Because of the Amyloidosis, SCT was not…[Read more]

]]> 6118488ca9ed16d4c13115384886b304 admin replied to the topic Diet Tips in the forum General http://www.myeloma.org.uk/forums/topic/diet-tips#post-93283 Sat, 04 Aug 2012 00:16:46 +0100 *plerixafor* – sorry for the typo!

]]> 6082a8d2307c28839e3b0881d694ee0b admin replied to the topic Diet Tips in the forum General http://www.myeloma.org.uk/forums/topic/diet-tips#post-93282 Sat, 04 Aug 2012 00:06:10 +0100 Hi Michele

I went gluten free when I started CTD in March 2011. I have myeloma and Amyloidosis, which affects my kidneys. Before I was diagnosed when I thought I had just a kidney problem, I had read how a gluten free diet could help. After being diagnosed with myeloma, I googled 'myeloma' and 'gluten' and found some articles which link the…[Read more]

]]> 39f874f25c34f7f9c20b9decabe92ea7 admin replied to the topic No SCT for now as I have amyloidosis in the forum Treatment http://www.myeloma.org.uk/forums/topic/no-sct-for-now-as-i-have-amyloidosis#post-97356 Tue, 15 May 2012 15:55:21 +0100 Msg deleted

]]> 198d9e9a7d8a15f0f415c7e178e890ce admin replied to the topic REPRIEVE AT THE ELEVENTH HOUR in the forum Treatment http://www.myeloma.org.uk/forums/topic/reprieve-at-the-eleventh-hour#post-98530 Thu, 24 Nov 2011 23:11:14 +0000 Great news Jo! You must be soooo relieved. I see from an earlier post that you are at Lister. Same here. I chuckled at 'nice chap not good at paperwork unless you chase him'. I very much suspect that you have the same consultant as me – the lovely Dr K! Tracey x

]]> 48bb2c81f5ee1d893e39915150656768 admin replied to the topic Hot Flushes in the forum Side-effects http://www.myeloma.org.uk/forums/topic/hot-flushes#post-104123 Tue, 18 Oct 2011 08:54:14 +0100 Lovely photo Debs! You've got a bit of a Kate Middleton look about you!

Tracey xx

]]> d249db1a9f758ae7b5922e1c2b189424 admin replied to the topic Hot Flushes in the forum Side-effects http://www.myeloma.org.uk/forums/topic/hot-flushes#post-104114 Mon, 10 Oct 2011 14:17:17 +0100 Hiya Debs

I haven't had a SCT, but finished CTD back in August. Around July time, I started experiencing night sweats. I also started noticing hair thinning. I mentioned both issues to my Haematologist at my September clinic and he dismissed the idea of an early menopause, but did say the night sweats were due to hormones. He also said the hair…[Read more]

]]> 4db0a3fd1dd6e1895ff2019595cefd31 admin replied to the topic Free Light Chains increase after completing CTD? in the forum General http://www.myeloma.org.uk/forums/topic/free-light-chains-increase-after-completing-ctd#post-91459 Mon, 03 Oct 2011 13:51:02 +0100 Hi Clara

You don't say whether your Dad's FLC readings are still within normal range. You may remember that I am in a very similar position to your Dad – MM with Amyloidosis with not too dissimilar FLC readings at the start of treatment. I started CTD at the beginning of March, achieved complete response by the end of April (ie. Lambda light…[Read more]

]]> 8d310046c4b82156b568965eec9a00d7 admin replied to the topic New treatment plan in the forum Treatment http://www.myeloma.org.uk/forums/topic/new-treatment-plan#post-97434 Sat, 28 May 2011 09:06:44 +0100 Dear Min

Thinking of you and Peter and what must be such difficult time for you both. I'm so glad that Peter is at least feeling well – that puts him in a positive position for the further treatment planned. I'm keeping everything crossed for you both.

Tracey x

]]> 1df7584e75451ebb76cde069cb2df679 admin replied to the topic Blocked and popping ears in the forum Side-effects http://www.myeloma.org.uk/forums/topic/blocked-and-popping-ears#post-103972 Sun, 22 May 2011 20:29:06 +0100 Hi Wendy

I too have suffered from some ear problems since being on CTD. I've had several occasions where my ears all of a sudden feel like they are full of water and there is a whooshing sound in them. It can last on and off for 2 or 3 days at a time and is VERY annoying. I haven't had any colds and have never had this before so can only…[Read more]

]]> e7ac9884e06eac648ddbe3abb910175f admin replied to the topic My Wonderful Husband Patrick in the forum General http://www.myeloma.org.uk/forums/topic/my-wonderful-husband-patrick#post-90420 Sat, 14 May 2011 18:00:52 +0100 I'm so sorry to hear of your loss, Tina and hope the special memories you have of Patrick will help you through this very sad time.

Love, Tracey xx

]]> 201032de31e90810dbfbc4473c4e8cc6 admin replied to the topic No SCT for now as I have amyloidosis in the forum Treatment http://www.myeloma.org.uk/forums/topic/no-sct-for-now-as-i-have-amyloidosis#post-97353 Sat, 14 May 2011 12:53:02 +0100 Thanks Dai! Not sure what happened there. I did sign off as "Tracey" in my original post, but instead a random reference to "tea" appeared instead. Bizarre! 🙂

]]> 40f81c3bad71c9cea506ee8476f69bae admin replied to the topic No SCT for now as I have amyloidosis in the forum Treatment http://www.myeloma.org.uk/forums/topic/no-sct-for-now-as-i-have-amyloidosis#post-97351 Sat, 14 May 2011 08:39:25 +0100 Thank you all for your comments. I feel much more positive now with the let's wait and see approach. Dai, there's a definite logic to what you are saying in that if CTD achieves a good remission and you feel well, why the need to press on with a SCT immediately? I hope you get great results with the velcade. It was good that you met that woman…[Read more]

]]> cbcd5e6c2bebf0c67c1ddd50c01bc164 admin started the topic No SCT for now as I have amyloidosis. in the forum Treatment http://www.myeloma.org.uk/forums/topic/no-sct-for-now-as-i-have-amyloidosis Thu, 12 May 2011 08:57:14 +0100 Morning All

I was diagnosed with IgA lambda light chain MM and Amyloidosis in February and am currently halfway through the third cycle of CTD. I send a blood sample to the National Amyloidosis Centre at the Royal Free in London every month and they monitor my free light chains. After two cycles, my light chains are now within normal range…[Read more]

]]> 4064b829fd89a068edb7300d2e3944eb admin replied to the topic Velcade in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade1298948366#post-103794 Fri, 08 Apr 2011 10:34:32 +0100 I don't get nausea from velcade

]]> 9ffbbf7ff18b37c961ac75bb01f22e30 admin replied to the topic Hello everyone, I'm new! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hello-everyone-im-new/page/2/#post-84392 Thu, 07 Apr 2011 22:46:07 +0100 Hi Clara
Thanks for your Dad's update – it does help to compare notes with someone in a similar situation. I've just had an appt through for my next 2 day assessment and scan at the Royal Free for the middle of August. Also had my blood results back after my first cycle of CTD – lambda free light chains have reduced from 152 to 43 so that seems…[Read more]

]]> b24d28ea3eda34e16b9d3c2964e55b32 admin replied to the topic It's so unfair! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/its-so-unfair#post-84446 Mon, 04 Apr 2011 22:10:02 +0100 Hi, I'm no expert ok, but as far as know grief always comes with anger, so it's good to know you feel it. I doubt you can find any satisfying and suitable target for it, but that doesn't make it any less valid.

From what you have described it seems that your brother's death was unexpected by the family and the medical team. Do you know what…[Read more]

]]> f9a146ea6f50e858ea251a6187e73bb7 admin replied to the topic It's so unfair! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/its-so-unfair#post-84442 Mon, 04 Apr 2011 09:15:56 +0100 All my sympathy.

How are the children?

Was MM the direct cause of death? Why did they take three months to diagnose? Was he receiving any treatment? These questions are pointless –

Nigel

]]> 85eacac1a638814b524852c484ef3608 admin replied to the topic Cycling in the forum General http://www.myeloma.org.uk/forums/topic/cycling#post-90092 Sun, 03 Apr 2011 18:22:43 +0100 Hi, I cycle, always have done since the age of four. I managed to get out a bit from the earliest days of treatment, but the hard winter kept me in, so I skiied instead. Since its warmed up I'm doing regular 25km outings, often 40km and an occaisonal 70km. My docotr is also a cycllist. OF course I4ve put on loads of weight whihc doesn't help and…[Read more]

]]> ee549fa5d9220abd383060ec42a12c4b admin replied to the topic Just got the diagnosis in the forum General http://www.myeloma.org.uk/forums/topic/just-got-the-diagnosis#post-90136 Sun, 03 Apr 2011 18:14:54 +0100 Hi Mark, I'm 51, I was diagnosed in November last year. As everyone has said the responses and survivial are very individual. When I discovered my diagnosis I thought 'oh fxxk I'll be gone soon', but I'm lucky enough to work in the medical area with some very straight talking friends – basically in the last decade progress has been such that MM is…[Read more]

]]> 4930cb163accf4a2eb1dda347d111e9d admin replied to the topic PP levels in the forum General http://www.myeloma.org.uk/forums/topic/pp-levels#post-90060 Sun, 03 Apr 2011 18:05:37 +0100 David, here in France I centrallise all the information and take it from the labs to the consultant, so its easier for us to keep an eye on, whihc would be great if I wanted to; in fact what I would like is for the medical staff to have the time to monitor it for me and take the decisions – such days are undoubtably over and mmodern patients have…[Read more]

]]> fe50f0ea0f57fa134ed3fc3f1f788caa admin replied to the topic PP levels in the forum General http://www.myeloma.org.uk/forums/topic/pp-levels#post-90051 Sun, 03 Apr 2011 18:00:13 +0100 Deb keep us up to date – I went down from 14 to 5 in one cycle, 5-3 in the next, 3 – 2 and I'm around 2 still. SCT in late May, though I'm not in hurry though with the PP levels so low.

]]> ad7919f443d5f96ec6779ebc12165882 admin replied to the topic Daily Mail Article in the forum General http://www.myeloma.org.uk/forums/topic/daily-mail-article#post-90162 Sun, 03 Apr 2011 17:56:11 +0100 Is there a connection between the fact that she didn't love him and his getting the Myeloma.

]]> 6ace726a9bf16ac277433b955f8fdd36 admin replied to the topic Daily Mail Article in the forum General http://www.myeloma.org.uk/forums/topic/daily-mail-article#post-90152 Sun, 03 Apr 2011 17:55:22 +0100 I've always been ahead of the trends (without even trying) so I reckon MM is the in cancer to have for sure.

]]> 55c50f3c0f08685fc163d25c33ab8589 admin replied to the topic Hello everyone, I'm new! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hello-everyone-im-new#post-84390 Sun, 03 Apr 2011 17:49:59 +0100 Welcome Tracey. Good luck – you'll find lots of good information and support on the site. We're all in a similar boat, but everyone's situation is different. Good Luck. Preserve your health as much as you can. Be careful of the dexamethasone – I put on 6 kilos in 2 months …

Nigel

]]> 47a86c782fae83cd657e288f4dfec633 admin replied to the topic Hello everyone, I'm new! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hello-everyone-im-new#post-84387 Sun, 03 Apr 2011 08:03:22 +0100 Hi Clara, Yes, Amyloidosis and Myleoma is pretty rare! I certainly haven't found anyone else with my condition, particularly of my age – it's very rare for someone of 42. Do you mind me asking how old your dad is? I'm guessing not that old if he is still working. I was at the Royal Free in the middle of February and started CTD on 3 March. I'm a…[Read more]

]]> e6fa3b7126f97ece766f7520c99fdce1 admin started the topic Daily Mail Article. in the forum General http://www.myeloma.org.uk/forums/topic/daily-mail-article Fri, 01 Apr 2011 15:37:57 +0100 Hi All

For my sins, I read the Daily Mail Online website (Don't judge me!). Anyway, today there was an article about 5 woman who married men they didn't love for very different reasons. The third couple in the article, Patricia and Jason met when they were very young and Jason was subsequently diagnosed with Myeloma, with tumours on his spine.…[Read more]

]]> 62123faab0d57d6356fa7558087debf7 admin replied to the topic Pain in side in the forum Carers http://www.myeloma.org.uk/forums/topic/pain-in-side/page/2/#post-105904 Tue, 29 Mar 2011 14:13:41 +0100 If they do the xray it is to check the bones after all he does have Myeloma, so checkin on the bones is reasonble. They can also do Ultrasound and of course MRI

]]> 2bc6721f6bad99096c249535a6525e0d admin started the topic Velcade price $1500 per shot. in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-price-1500-per-shot Tue, 29 Mar 2011 14:10:39 +0100 Just for interest I thought I'd look up the price of Velcade – its about $1500 for 3.5 mg. Its relevant because of the NICE evaluation that rejected it as a first line treatment because it was over £35,000 per QALY. I think they might have got their logic a bit wrong, because if you don't have Velcade then you have something else (that will…[Read more]

]]> fc9502739cfd131c60b744342bdbbc78 admin replied to the topic Ah Well! in the forum General http://www.myeloma.org.uk/forums/topic/ah-well#post-90098 Tue, 29 Mar 2011 01:20:46 +0100 This is truly devastating. Good luck. The Velcade certainly seems to be working for me – but I seem to be one of the lucky ones.

Que bugerra

N

]]> b2a4444de3e08a52281c230de2aaa761 admin replied to the topic Velcade Day 6 in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-day-6#post-97234 Tue, 29 Mar 2011 01:04:11 +0100 I'm fine, that's what's so amazing, I feel dreadful for 36 hours and then bing its all over and I can get on with life again. Yesterday (Sunday) I could hardly walk to the toilet, today I cycled 37km at 25km/h (average, hitting 50km/h and doing 35 a lot of the time). It doesn't stop the side effect being really disruptive (everything gets stopped…[Read more]

]]> e4dc10729489309a2b627ebfdc2209c1 admin replied to the topic Velcade Day 6 in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-day-6#post-97232 Mon, 28 Mar 2011 14:00:52 +0100 Hi, I'm sorry its rough. I spent nearly all morning sleeping having done the school run and having picked up my 12 year old daughter from school as she was 'feeling unwell' – I felt very shabby – rambling into her school unshaven and wobbly. Strange dreams, very vivid, of people I haven't seen for 25 years. Anyway, I'm now up an 'better', so I'm…[Read more]

]]> 42aa8c7877ea2201d81466bffd52e140 admin replied to the topic Velcade Day 6 in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-day-6#post-97230 Sun, 27 Mar 2011 21:52:13 +0100 Wow! I couldn't have done any of that today, and I'm afraid I make it clear to everyone that I can't be expected to do anything or cope or be strong! I just fold like a house of cards. Tomorrow will be better.

]]> 698fb25468722412e2f643a038a95bea admin replied to the topic Horror of Horrors in the forum General http://www.myeloma.org.uk/forums/topic/horror-of-horrors#post-90085 Sun, 27 Mar 2011 14:50:40 +0100 Sounds like dexamethasone to me! :'-(

]]> 8e2458cf000466f372986b5688472650 admin replied to the topic Velcade Day 6 in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-day-6#post-97228 Sun, 27 Mar 2011 14:44:36 +0100 Oh I know. Just try explaining that to the family! They have a hard time following the variations.

]]> 7f4d8a805654074ce3b6ec860625fe49 admin started the topic Velcade Day 6. in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-day-6 Sun, 27 Mar 2011 12:23:37 +0100 Hi just to say that true to form day six leaves me totally wiped out.:-S

]]> f3c8665dd62c3224c3642649573d8373 admin replied to the topic Pain in side in the forum Carers http://www.myeloma.org.uk/forums/topic/pain-in-side#post-105889 Sat, 26 Mar 2011 22:04:12 +0000 I would have it checked. I was diagnosed following months of Side pain that always seemed to be moving around. In the end I noticed I had a 'broken' rib and got diagnosed. So it could be MM related. My paIn felt very muscular, it wasn't.

]]> e956f3b0c22ee638836e5f27638d5606 admin replied to the topic PP levels in the forum General http://www.myeloma.org.uk/forums/topic/pp-levels#post-90049 Sat, 26 Mar 2011 08:46:39 +0000 Hi Gill, my pp level before treatment was 6 (I am day 24 of ctd). Just 6 weeks previous to that, it was 2 and this was classed as 'very low'. At that stage, I was still being investigated for what was thought to be a common kidney problem and a pp level of 2 was not suspicious. I have amyloidosis, a complication of myeloma, and I understand that…[Read more]

]]> 10ce5e01561b433ab58130eb69b03116 admin replied to the topic Shingles advice please! in the forum General http://www.myeloma.org.uk/forums/topic/shingles-advice-please#post-88470 Wed, 23 Mar 2011 14:47:14 +0000 Huhm, so the consultant says the Shingles wont come back when they've gone away? Ok, but if I've understood what they're doing with me, its a general prophylaxis and they started it at the start of treatment and will stop it when the treatment is over, and that suits me. I'm glad she's active and building on her healthiness.

]]> 1640ce9ba320af81254afbbba77a2992 admin replied to the topic Just a query on Allo transplants in the forum General http://www.myeloma.org.uk/forums/topic/just-a-query-on-allo-transplants#post-90020 Wed, 23 Mar 2011 11:08:05 +0000 I think that because the harvesting is basically straightforward and auto transplants are so much safer and simpler to live with they only use allo if they must. Also the medication is pretty good so the transplant is not a life saver.

]]> 4abd4026480fa5d5b149778a6e2ba5d1 admin replied to the topic New to discussion board - carer in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-discussion-board-carer/page/2/#post-84411 Wed, 23 Mar 2011 11:03:35 +0000 Do try and verify that she is not being treated because the disease is inactive. Age is only a guide. I was talking to a 72 yr old man yesterday in the dayward who had had a sct last year as it's a question of physical status and he is well and fit (he has lymphoma). I'd definitely get a second opinion indeed the most import mat thing you can do…[Read more]

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