Myeloma Forum | amanda | Activity https://forum.myeloma.org.uk/members/amanda/activity/ Activity feed for amanda. Mon, 13 Apr 2026 20:50:52 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 675dc0b7b50fed186b362da31974d204 amanda replied to the topic The Under 50s Group in the forum Under 50s http://www.myeloma.org.uk/forums/topic/the-under-50s-group/page/8/#post-122751 Wed, 24 Jun 2015 19:55:48 +0100 Hi Beverley

I had VCD but am now on VDT (thalidomide) I had neuropathy in hands and feet so velcade was reduced. It is now under control.  So hopefully you will be ready as I almost am for the SCT which to be fair is quite a scary procedure but I am sure that staying positive and upbeat is half the battle to winning.  Good luck.  I should be hav…[Read more]

]]> b017361e1565153b0e082f46c8e97992 amanda replied to the topic bone pain after sct in the forum Side-effects http://www.myeloma.org.uk/forums/topic/bone-pain-after-sct/#post-122600 Mon, 15 Jun 2015 08:46:49 +0100 Hi Rebecca

Forgot to mention that my kidney function is only 6% .  That is my main concern that I am already very low.  I will possibly loose my kidneys totally because of the SCT .  I have got to way up if it is going to be worth it .  Remission or kidneys I suppose. take care Amanda.

]]> ada228ac423ca04f22f2d41d4f6337f7 amanda replied to the topic bone pain after sct in the forum Side-effects http://www.myeloma.org.uk/forums/topic/bone-pain-after-sct/#post-122599 Mon, 15 Jun 2015 08:38:18 +0100 ~Thank you Rebecca for your reply.

I had a course of velcade and dex. for 5 months which bought me down from 4000 to 2000.  which of course wasn’t enough.  I am now on velcade, dex and thalidomide which has bought me down from 2000 to 263 so far with another month to go.  So far I have been battling with bringing the levels down.  SCT was rec…[Read more]

]]> c075d18c7a09f0d66404a05a49736b39 amanda replied to the topic bone pain after sct in the forum Side-effects http://www.myeloma.org.uk/forums/topic/bone-pain-after-sct/#post-122581 Fri, 12 Jun 2015 13:31:39 +0100 wonder if anyone can help me . I was diagnosed last March with multiple myeloma.  I was diagnosed due to kidney failure . I am now on dialysis three times a week.  I have been on a course of velcade, dex, and thalidomide twice a week and steroids for almost 6 months now.  The level has come down now to 200 so far hoping that it is a bit lower af…[Read more]

]]> d179189d8de3d7229fdc9eda6a7fe258 amanda replied to the topic dental care in the forum General http://www.myeloma.org.uk/forums/topic/dental-care/#post-122321 Fri, 29 May 2015 17:35:04 +0100 Has anyone in the forum read about the new drug DTP3 which is to help Myeloma patients.  Would be interest to hear your verdicts on the findings of this amazing news.  Amanda.

]]> b2c73d9151d2fc00db3a2ec069ee5fab amanda replied to the topic Myeloma X1 maintenance in the forum Side-effects http://www.myeloma.org.uk/forums/topic/myeloma-x1-maintenance/#post-121669 Wed, 08 Apr 2015 17:58:07 +0100 to jan Jordon

I noticed an email in my inbox but cant find your reply on the forum.  Thank you for your reply.  my side effects of trembling and shaking have calmed down and seem a little better although still there they are now bearable.  I don’t have tingling in my hands and feet either so I feel pretty lucky.  I am still like an old woman tho…[Read more]

]]> ac31a6e88db95d8221161cb1b6a80163 amanda replied to the topic VELCADE AND THALIDOMIDE in the forum General http://www.myeloma.org.uk/forums/topic/velcade-and-thalidomide/#post-121283 Sun, 15 Mar 2015 10:24:55 +0000 Carol and Janet.  thank you for your replies all information helps.  I have started to feel like an old woman to that is the best way to describe it seeing as I am a very active fit woman of 56 , I actually feeling like 76 at the moment.  My muscles are weak , I am trembling and shaking, have dizziness and constipation.  This is all due to the tha…[Read more]

]]> b52c0a6253753da84e5e9d8019920e5a amanda replied to the topic The Under 50s Group in the forum Under 50s http://www.myeloma.org.uk/forums/topic/the-under-50s-group/page/8/#post-121205 Tue, 10 Mar 2015 11:24:19 +0000 Hi Matt

Thank you for the idea about the book I will get that.  I am finding the delays between treatments and waiting for results takes so long.  The hospitals have lost two blood tests which upon I am waiting for results back since Christmas.  After the courses of treatment have finished there doesn’t seem to be any urgency in having an ap…[Read more]

]]> 71fefb313ae1d5c7939aa8986f51bfa8 amanda replied to the topic The Under 50s Group in the forum Under 50s http://www.myeloma.org.uk/forums/topic/the-under-50s-group/page/7/#post-121124 Tue, 03 Mar 2015 19:45:33 +0000 H I  Matt

Thank you so much for your reply ,  it has really helped to put things in to prospective.  I am fully aware that there are going to be problems along the way and I know that I am ready to handle it all , but it is a great help to know roughly what is in store.  I hope that Beverley has been able to read your reply too and has got som…[Read more]

]]> 7033a8bb74a168be79f0336bba93cf18 amanda replied to the topic The Under 50s Group in the forum Under 50s http://www.myeloma.org.uk/forums/topic/the-under-50s-group/page/7/#post-121104 Mon, 02 Mar 2015 21:28:19 +0000 Hi Matt , would like to thank you for your information on the SCT it was very informative, sounds like you found it ok . You put it just as it is so I feel quite relaxed about it. Did you loose your hair etc on the last chemo ? and were you very sick ?  Good luck to you in the future.  regards Amanda

]]> 8d83aa6d468c0df14c5708c81a0cc960 amanda replied to the topic The Under 50s Group in the forum Under 50s http://www.myeloma.org.uk/forums/topic/the-under-50s-group/page/7/#post-121088 Mon, 02 Mar 2015 11:30:29 +0000 Hi Beverly , I have just started CDT working towards having SCT in around end of April.  I don’t know what the procedure is if you start harvesting cells and stay in hospital or if you do some kind of injection  for yourself at home.  I know that the blood count starts coming down to take us in to anemia which at that point you feel very po…[Read more]

]]> 683a3bb9356b65c4871e1dad55bb041a amanda replied to the topic loud whistling in ear in the forum Side-effects http://www.myeloma.org.uk/forums/topic/loud-whistling-in-ear/#post-121087 Mon, 02 Mar 2015 11:21:03 +0000 I have whistling in my ears too, hadn’t realised that the velcade may  be responsible , I have not worked or used anything loud over the years so may be it is a side effect.  I will ask when I am next at a consultation.  Worth investigating.  Thanks for that info Christine.

]]> f4f176037aa3d6592b759d1b5e247553 amanda replied to the topic Both parents diagnosed - their consultants never come across it before!! in the forum General http://www.myeloma.org.uk/forums/topic/both-parents-diagnosed-their-consultants-never-come-across-it-before/#post-121031 Sat, 28 Feb 2015 10:04:37 +0000 I am so stunned to hear your news of your parents.  You must be beside yourself. There is so much about this disease that we don’t understand.  I wish you well , it will take a long time to get over so my distraugh

diagnosed with MM in 2014 with kidney failure of 6% so it is all of great concern.  Its not an easy disease to get your head ar…[Read more]

]]> 9d20188f4e740fa6d20ee34c6d7750ac amanda replied to the topic Paraprotein in the forum Treatment http://www.myeloma.org.uk/forums/topic/paraprotein/#post-121030 Sat, 28 Feb 2015 09:57:12 +0000 I would encourage boosting the level up to two injections a week.  the steroids will go up with it and you may find that will help you with your energy problem.  hope that this helps. Amanda.

]]> 9695e57ac7523c67c5b277dd0edf165b amanda replied to the topic Paraprotein in the forum Treatment http://www.myeloma.org.uk/forums/topic/paraprotein/#post-121029 Sat, 28 Feb 2015 09:54:05 +0000 I am on VCD too.  I had the same course as you last year.  I went down from 4000 in light chain to 2000 not paraprotein result as they have never given that to me .   I was absolutely fine on it.  Now I am having a course of 2 injections a week instead of one and taking thalidomide too.  So far I am far. They had my blood results back one was re…[Read more]

]]> 13c2e3755080c5ee5759ce25b533ce83 amanda replied to the topic AL Amyloidosis carer in the forum Carers http://www.myeloma.org.uk/forums/topic/al-amyloidosis-carer/#post-121022 Fri, 27 Feb 2015 09:23:41 +0000 I had VCD treatment last year I had levels in light chain of 4000 which apparently is quite high with a kidney function of only 6%. I have dialysis 3 times a week.  I was before this year a very fit and healthy woman and was enjoying my life.  After the VCD which I didn’t find difficult at all I had reduced my level to 2000.  Not as low as the do…[Read more]

]]> 628d2c0adcf12ec6acc80cfed005d985 amanda replied to the topic Kidney problems and fistula in the forum Related conditions http://www.myeloma.org.uk/forums/topic/kidney-problems-and-fistula/#post-121021 Fri, 27 Feb 2015 09:06:37 +0000 I too have kidney failure with myeloma .  In fact that is how my myeloma was picked up.  I became very ill , with almost like a very bad flu like symptoms.  When I could hardly get out of bed I was diagnosed with having acute kidney failure and  was rushed into hospital.  My function was 8% and after a biopsy was found to have myeloma being the…[Read more]

]]> 5581413fac7ca3017f55b9fcb3ff1759 amanda replied to the topic Negative consultant and no encouragement in the forum Treatment http://www.myeloma.org.uk/forums/topic/negative-consultant-and-no-encouragement/#post-121020 Fri, 27 Feb 2015 08:56:06 +0000 Hi Rebecca

Thank you for your reply.  I noticed that you too have kidney failure, my gfr is 6% so I am just hanging on.  I was very pleased to learn that your SCT didn’t impact on you negatively.  How are you feeling now and did you find the SCT an aggressive procedure ?.  I don’t suppose I will be lucky enough to save my kidneys as they are ver…[Read more]

]]> b609fd2ce6e5ac3ad5282c908c618345 amanda replied to the topic Negative consultant and no encouragement in the forum Treatment http://www.myeloma.org.uk/forums/topic/negative-consultant-and-no-encouragement/#post-120996 Wed, 25 Feb 2015 23:03:07 +0000 p.s. made a mistake it should read that I am now under the Kings in London and note  it should not read I not with the Kings.

]]> 8c36c55d9bd7ffb2bfe92570b3df9d31 amanda replied to the topic Negative consultant and no encouragement in the forum Treatment http://www.myeloma.org.uk/forums/topic/negative-consultant-and-no-encouragement/#post-120995 Wed, 25 Feb 2015 23:01:25 +0000 Hi Maureen.  Was very interested with your comments of your disappointment with your consultant.  I too have had I feel a bad response from mine.  I went to mine and he actually put in his head in his hands and said that the with the results he had in front of him , he just didn’t know what to do next.  He would have to have a discussion with his…[Read more]

]]> 1e8f3755457687dcf5b2b1cb40d7f8d7 amanda started the topic VELCADE AND THALIDOMIDE in the forum General http://www.myeloma.org.uk/forums/topic/velcade-and-thalidomide/ Wed, 25 Feb 2015 22:39:19 +0000 I am just about to start a course of about 9 weeks of double dose of velcade with Dexomin and thalidomide.  Has anyone been on this.  This is supposed to increase the destruction of the myeloma ready to start the harvesting of my Stem Cells.  I will then be going on Mepthalan before I go into the SCT.  I just wondered if anyone else has been on…[Read more]

]]> d4bec1936806ee0aa4b708d7c9d81eb7 amanda replied to the topic Treatment and chemo in the forum General http://www.myeloma.org.uk/forums/topic/treatment-and-chemo/#post-120674 Sat, 07 Feb 2015 21:45:09 +0000 Yes Richard , we did think that too.  Quite a big difference that little 0 that means nothing to some but much to me.

]]> 566c1eb9c5907c0d4212222cf01017da amanda replied to the topic Treatment and chemo in the forum General http://www.myeloma.org.uk/forums/topic/treatment-and-chemo/#post-120670 Sat, 07 Feb 2015 19:45:45 +0000 Hi Everyone

Just a little puzzler perhaps someone out there has experienced the same.  I have had a count of 2000 in the light chain serum test, that has been the same for a few months now.  This test was done at Canterbury.  On a visit to Kings Hospital I had to have a blood test to get my latest reading of light chain serum and it came back at…[Read more]

]]> f6ef843cc1cd114c6d8dc61cb950c65d amanda replied to the topic Bendamustine treatment in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-treatment/#post-120511 Sat, 24 Jan 2015 17:08:51 +0000 I read your comments with interest.  I have light chain readings of 4000 to 2000 .  on velcade with dex.  This result wasn’t enough to put me into remission with a lower reading.  I needed to be at around 25 to 100.  I am just about to start another course of velcade with thalidomide to try to get the reading down.  I am disappointed to hear your…[Read more]

]]> 45d16d1cde091fd3866b684ea98b2fb6 amanda 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-120503 Fri, 23 Jan 2015 22:58:20 +0000 Hy Cygnet

I have just noticed your comment on looking for a specialist.

I am in KENT AND CANTERBURY .  I have been under them since last March.  Things have been quite slow in progress.  I asked for a referral to the Royal Marsden by my GP and Kings in London.  I have had both referrals now. The Marsden was spot on and really have got a sli…[Read more]

]]> 1793a2ed82e02c078cc6e2754e188677 amanda started the topic SCT OR NOT in the forum General http://www.myeloma.org.uk/forums/topic/sct-or-not/ Thu, 22 Jan 2015 20:38:55 +0000 Need an answer to question.  Just about as from tomorrow going to have the 6 cycle chemo , then SCT. Nothing else has been discussed with me as to any alternatives.  I don’t know if there are any other prospects that have good results. The SCT does seem very aggressive surgery to have.  I have kidney failure.  Light chain is 1900.  That shou…[Read more]

]]> 7cb0730c5dba04ee86cc4248843ee405 amanda replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/5/#post-120491 Thu, 22 Jan 2015 19:16:54 +0000 Thank you Dorothy.  That was a kind thought you put out to everyone, you keep well too and hope that you are getting plenty of support. Amanda.

]]> 62d3fec07b154c23419ffccc34c1da08 amanda replied to the topic stem cell Transplant in the forum General http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-5/#post-120429 Tue, 20 Jan 2015 10:27:10 +0000 Hi Jan

Thank you for your account .  Everything has become so much easier now that I can see the unknown .  It was quite daunting talking with the consultant as everything seemed so drastic, but I now can see that it possibly could be so very different to what could happen.  I am pleased to learn that you are in remission and so far with the ac…[Read more]

]]> e96bb868a383ab6c815f0bd398e10637 amanda replied to the topic stem cell Transplant in the forum General http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-5/#post-120426 Tue, 20 Jan 2015 09:53:58 +0000 Good morning Keith

Thank you very much for your account and story.  It made me laugh in a few places as I could imagine myself being high as a kite as I only have to have a sniff at a glass of wine and I am rolling about .   Having said that so far everything I have heard from people so far has been very different from the consultant telling th…[Read more]

]]> b656acca4799158e78241bdf8e25a0eb amanda replied to the topic stem cell Transplant in the forum General http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-5/#post-120416 Mon, 19 Jan 2015 21:07:04 +0000 Hi Tony

Thank you for your account .  I will remain positive , I have up till now , especially for the family as I don’t want any of them upset. Today I had a wobbly moment but your story has put me back on the map .

It was great to hear that you are still having a good life and enjoying yourself , and feeling well with it.  Wow well done.  Goo…[Read more]

]]> f3cbba15feed80aadbb81431b9e80b1d amanda replied to the topic stem cell Transplant in the forum General http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-5/#post-120414 Mon, 19 Jan 2015 20:41:01 +0000 Hi Tony

Thank you so much for taking the time to tell me how it was for you.  I feel reassured that I am doing the right thing , as you quite rightly pointed out the doctors tell you all the possible effects and it starts to sound unbelievably scary and almost unreal.  I am really pleased to hear that you have been there and done it and sounds a…[Read more]

]]> e3f5d7b7fb56a30f841b734a34b39cad amanda started the topic stem cell Transplant in the forum General http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-5/ Mon, 19 Jan 2015 13:54:21 +0000 Hi Everyone  .  Just wondered if anyone can give me an account of what to expect in the lead up to the Stem Cell Transplant and the effects whilst undergoing the procedure.  I am under the impression that it is going to be an awful ordeal. I am really rather well at the moment and my concern is that I am going to make myself worse from now on an…[Read more]

]]> e8449041deb298ba9539bc05995c8662 amanda posted an update: Not sure if anyone has read my post yet, to be honest not […] https://forum.myeloma.org.uk/activity/p/37186/ Mon, 19 Jan 2015 11:05:02 +0000 Not sure if anyone has read my post yet, to be honest not even sure if I have posted it correctly to the forum. Hope so , as I am waiting anxiously for a reply to my concern ,,,, has anyone seen my question …. and can help. thanks

]]> 0 2c553d8080a314ab695547ca1f8aa400 amanda posted a new activity comment https://forum.myeloma.org.uk/activity/p/804/#acomment-37185 Mon, 19 Jan 2015 10:22:17 +0000 hI
Can anyone tell what to expect with the procedure leading up to and at the time of the Stem Cell Transplant and how and what to expect . I am just about to start a new course of chemo then will be having a Stem Cell after. I feel very well at present and I am worried that this treatment is going to be the slippery slope to being unhealthy .…[Read more]

In reply to - nicola and ellen are now friends ]]> 74e4e1367e1ee4321659a86d11c8e463 amanda became a registered member https://forum.myeloma.org.uk/activity/p/37181/ Mon, 19 Jan 2015 08:43:58 +0000 0