Myeloma Forum | AlisonDrackett | Friends Activity https://forum.myeloma.org.uk/members/ali49/activity/friends/ Activity feed for AlisonDrackett's friends. Wed, 22 Apr 2026 05:14:59 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 55554f3412db49951180ba7785e83558 susie replied to the topic Curcumin in the forum General https://www.myeloma.org.uk/forums/topic/curcumin-6/#post-137906 Fri, 11 May 2018 18:37:43 +0100 Hi All,

I’ve started taking Curcumin today. I got them at “just vitamins” and hope they work, not only in the hope that it keeps my PP’s down at present levels, but also for my quite severe arthritis which has been very painful (spine) since I did some gardening. Most of my discs have gone together with vertebral slips almost cripples me at…[Read more]

]]> 65b4c7d35d092916acc893bd23b7740d rebeccarollinson replied to the topic Due to have stem cell transplant Jan 2018 any advice about getting through it in the forum Treatment https://www.myeloma.org.uk/forums/topic/due-to-have-stem-cell-transplant-jan-2018-any-advice-about-getting-through-it/page/2/#post-137845 Fri, 04 May 2018 14:47:10 +0100 Hi Paul – good luck with your SCT when it comes – it really is just another treatment option that gives you a rough couple of weeks then on the road to recovery.It’s not pleasant in parts but it is all very doable with a relatively short length of unpleasant time. Your recovery will be so much easier and quicker at 51 yrs if all goes to plan. S…[Read more]

]]> 124bf564c0fd0f3ef004a183413bc49d susie replied to the topic Stopping treatment in the forum Treatment https://www.myeloma.org.uk/forums/topic/stopping-treatment/#post-137829 Wed, 02 May 2018 18:46:32 +0100 Hi Teresa
That’s really interesting and I shall bear it in mind when I next require treatment, which I hope will be a long time from now.

I’ve heard good things about Southampton Hospital so sounds though your hubby is getting the best care.

I wish him all the best

susie

]]> bcc2f9a7a67690e0bcb3872055f735a3 rebeccarollinson replied to the topic Stopping treatment in the forum Treatment https://www.myeloma.org.uk/forums/topic/stopping-treatment/#post-137826 Wed, 02 May 2018 18:06:16 +0100 Hi – Whikst maintenance is only a given when on a trial when I discussed treatment options st 1st relapse (tho not there yet!) I was led to believe I would be on low dose thalidomide or say revlimid until the treatment stopped working – which is basically the same as maintenance. Whilst we do not get offered maintenance up front in the Uk (unless…[Read more]

]]> b6e8ad3f70d9f547a8b57c1d6d78aaea susie replied to the topic Stopping treatment in the forum Treatment https://www.myeloma.org.uk/forums/topic/stopping-treatment/#post-137825 Wed, 02 May 2018 17:12:16 +0100 I’ve just finished 8 cycles of VMP, and my PP’s have plateaued at 11 which I must say I am disappointed in. I had at least hoped it would get down to a single figure. There has been no mention of continuing treatment.
I understood the maximum Velcade one can have is 12 cycles (NICE protocols ) Also that maintenance is not approved in the UK…[Read more]

]]> bd330dab92239e1171d5aed47625f909 rebeccarollinson replied to the topic Advice please on post stem cell recovery in the forum Newcomers https://www.myeloma.org.uk/forums/topic/advice-please-on-post-stem-cell-recovery/#post-137792 Mon, 30 Apr 2018 22:50:56 +0100 Hi – 30 days is very soon after such a big procedure. A consultant likened it to having open heart surgery so that should put it in perspective. Your immune system will be up and down as it reconstructs. I was very up n down for quite a while but once I’d turned that corner I went from strength to strength and would say back to full fitness in 3 m…[Read more]

]]> 5c2b8a698fc41c70fe0ea8083824ac4d rebeccarollinson replied to the topic cause for celebrating -10 years and counting in the forum General https://www.myeloma.org.uk/forums/topic/cause-for-celebrating-10-years-and-counting/#post-137765 Sun, 29 Apr 2018 12:17:56 +0100 Hi Linda – great to hear you had a fabulous time – I come from a family of long livers with no cancer connections. I was diagnosed at 50 and whilst light chains were relatively small they aggressively attack the kidneys (14:16 translocation) I had chemo for 8 months Sct then drug free currently at 4yrs 4 months post Sct. I do get tetchy now…[Read more]

]]> de6cb5eb25b67f53800b008ecc7e5207 rebeccarollinson replied to the topic cause for celebrating -10 years and counting in the forum General https://www.myeloma.org.uk/forums/topic/cause-for-celebrating-10-years-and-counting/#post-137755 Sat, 28 Apr 2018 19:27:23 +0100 Hi Linda – Many congratulations and hope you too are having some bubbly! It is great to hear that this achievable- posts like yours are much needed boosts to us all. Enjoy your celebrations
Rebecca

]]> 566d8c0de120b06d177b627c013614fe rebeccarollinson replied to the topic Hair loss and natural hair wigs any advice please? in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hair-loss-and-natural-hair-wigs-any-advice-please/#post-137735 Thu, 26 Apr 2018 20:13:40 +0100 Hi – The hospital will arrange a freecwig/fitting pre losing it which will reassure her how fab they are. As I kept my illness a secret I was hell bent on having good wigs – I got them online where you can try n return but there are shops in cities where you can try etc. I spent a fortune on them as I chose to match my hair and shoulder length…[Read more]

]]> c10359b7f8b614a43afd064ac471f4ed rebeccarollinson replied to the topic What to read or find out at first? (Dads recent diagnosis) in the forum Newcomers https://www.myeloma.org.uk/forums/topic/what-to-read-or-find-out-at-first-dads-recent-diagnosis/#post-137550 Sun, 01 Apr 2018 19:13:00 +0100 Hi sorry to hear your news and I know how overwhelming this is but there is no big rush to know everything now as you are in this for the long haul. My advise is for you to read all the info etc found on this site re treatments, MM etc but only share the info when your parents ask – it is a huge shock and often you only want to know things when…[Read more]

]]> 81d6b27da352991ca78250a95553f54a susie replied to the topic Plateau in the forum Newcomers https://www.myeloma.org.uk/forums/topic/plateau/#post-137381 Mon, 12 Mar 2018 19:12:17 +0000 Hi,

I am on my 8th & last cycle of velcade, melphalan, & prednisolone and I too have plateaued at 11, from 54. I am rather disappointed it hasn’t, at least, reached single figures. I haven’t found the treatment too bad after the first two cycles.

I intend to take Circumin, with agreement from my consultant, in the hope it will keep things in…[Read more]

]]> cfd401fd1156a2d29087222607ec25bb rebeccarollinson replied to the topic Plateau in the forum Newcomers https://www.myeloma.org.uk/forums/topic/plateau/#post-137379 Mon, 12 Mar 2018 08:59:02 +0000 Hi – as your father has plateaued with safe numbers not requiring further treatment then it is normal to come off all meds and hopefully resume a good quality drug free life. Unless on a trial which involves maintenance therapy we are not in a position in the UK to have that option. I have not had the option of small dose maintenance BUT on…[Read more]

]]> 8d2f85449ebe8b02cdd807362a9a6f8a susie replied to the topic Curcumin in the forum General https://www.myeloma.org.uk/forums/topic/curcumin-6/#post-137337 Wed, 07 Mar 2018 20:38:22 +0000 Hi Paula

I was very interested in your post. I have been reading up as much as I can about curcumin and myeloma, having spoken to my consultant about my starting it when I’ve finished my next and final cycle.

I would appreciate info on what is the best dose. I have seen a post on m beacon that “doctor best” make is a good one. I don’t know if…[Read more]

]]> a73fa946826be7154857ff2acb7789bb rebeccarollinson replied to the topic Tiredness in the forum Side-effects https://www.myeloma.org.uk/forums/topic/tiredness-3/#post-137268 Sun, 04 Mar 2018 23:35:56 +0000 Hi Denise, what chemo are you on exactly? It is normal to get more and more fatigued as the cycles go on but….when you feel so fatigued – force yourself to go for a brisk walk and trust me you will feel instantly less fatigued. It is hard to believe but pushing yourself to exercise will lift your mood and energy levels. Give it a try you will be…[Read more]

]]> 5ca811229a892843816d8abbc7bcab75 susie replied to the topic Tiredness in the forum Side-effects https://www.myeloma.org.uk/forums/topic/tiredness-3/#post-137266 Sun, 04 Mar 2018 15:29:57 +0000 Hi Denise

It’s normal to have fatigue whilst on chemo. It’s one of the common side effects of most treatments, depending to a degree, on which you are on.

Just listen to your body and rest if you feel so, but also try to take a little light exercise such as walking when you feel up to it.

Best of luck

susie

]]> 1efb5bf64f38a547a94cc9a3a4dec81b rebeccarollinson replied to the topic 11years from diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/11years-from-diagnosis/#post-137255 Fri, 02 Mar 2018 14:51:55 +0000 NIck that is fantastic news and long may it continue. Thanks very much for sharing – we all need to hear positives along the way for a much needed boost
Rebecca

]]> c89d1748ebacaf7f627df2c92b844431 rebeccarollinson replied to the topic Due to have stem cell transplant Jan 2018 any advice about getting through it in the forum Treatment https://www.myeloma.org.uk/forums/topic/due-to-have-stem-cell-transplant-jan-2018-any-advice-about-getting-through-it/#post-137247 Wed, 28 Feb 2018 17:37:35 +0000 Hi Carole, Good luck with the transplant – you may have got the call by now which will negate this response but….I believe many people suck on ice for 3-3 hours or as long as they can stand thus protecting the mouth area and hopefully prevent mucositis. Those who do this and fon’t Get it assume it is the ice effect. I did not suck any ice and d…[Read more]

]]> b31cc3f090d63ee0f0718089114d7eb3 rebeccarollinson replied to the topic High Risk? VTD PACE? in the forum Carers https://www.myeloma.org.uk/forums/topic/high-risk-vtd-pace/#post-137241 Mon, 26 Feb 2018 22:01:20 +0000 Hi Elise, Sorry to hear about your mum. VDT Pace is a combination of bortezomib, dexamethasone, thalidomide, cisplatin, adriamycin, cyclophosphamide, and etoposide – so the addition of the last 4 to the VDT she was on. It is, as you can imagine by the sheer number of components a very harsh multiple treatment and is basically like throwing the…[Read more]

]]> 04937cbf6440acb0070accffefbb6eeb rebeccarollinson replied to the topic 7 Years ago Today in the forum General https://www.myeloma.org.uk/forums/topic/7-years-ago-today/#post-136878 Sat, 20 Jan 2018 21:01:05 +0000 Hi Phil, Congratulations – love reading posts like this – whilst we are all different it’s great to hear the positives.I am just over 4 years post transplant with no treatment/in remission and get tetchy/can’t help but wonder how long it can last.
Hope you are supping some bubbly now and long may you continue to be in remission – hope to read you…[Read more]

]]> cf66df903f2e81dc210e50c5112005c6 susie replied to the topic Advice and opinions in the forum General https://www.myeloma.org.uk/forums/topic/advice-and-opinions/#post-136762 Wed, 17 Jan 2018 19:12:37 +0000 Hi Michael

I”m doing well thank you. Things improved at the hospital and I now see my own consultant who is absolutely lovely. I have 2 more cycles to have of the MVP and apart from the first week of each cycle, when I have to take the tablets, I don’t feel too bad at all from Velcade. My paraproteins are down to 12 from 54 and light chains are…[Read more]

]]> 7e9a18c18864b420049267ba29b4fbac susie replied to the topic Curcumin in the forum Treatment https://www.myeloma.org.uk/forums/topic/curcumin-5/#post-136585 Sun, 07 Jan 2018 18:55:34 +0000 Hi Sue. Thanks for your reply. Were your paraproteins measurable when you started taking Turmeric and if so have they dropped as a result. Also what dose did you take. ?

Best Wishes

susie

]]> e392169c66c0276fad352fcd6b55faf2 rebeccarollinson replied to the topic Just Diagnosed in the forum Newcomers https://www.myeloma.org.uk/forums/topic/just-diagnosed-5/#post-136561 Tue, 02 Jan 2018 20:49:44 +0000 That sounds just what the Dr ordered, lots of distractions and lots of positive focus on the future. There is no doubt he will get through it but it is inevitably a long and winding road – he is young and fit – one of the greatest assets going into treatment but it is small consolation for having it so young. At 50 – and very fit – I wished I had…[Read more]

]]> 9f17ea05e750d311ce2cac71037ded78 rebeccarollinson replied to the topic Just Diagnosed in the forum Newcomers https://www.myeloma.org.uk/forums/topic/just-diagnosed-5/#post-136559 Tue, 02 Jan 2018 19:35:26 +0000 Hi – So sorry to hear your news – I was 50 when diagnosed has velcadd n dex followed by an SCT and remain in remission to date and physically life is back to normal. It is no comfort but is age is a very good factor in treatment/options. If you choose to look at survival stats beat in mind the average age of diagnosis is around 70 where there are…[Read more]

]]> c6c27397cf1ec929a25ee657a4849458 susie started the topic Curcumin in the forum Treatment https://www.myeloma.org.uk/forums/topic/curcumin-5/ Tue, 02 Jan 2018 19:09:37 +0000 Hi All,

I would be interested to learn if anyone takes Curcumin and if so, do they find it does help control their paraprotein levels and at what dose.

I’ve been reading about it some having success and have spoken to my consultant about who thinks it’s worth a try. I have two more cycles of treatment to go and thought I would start it when…[Read more]

]]> 8a34e798dc03a88130ca5794ab2e198e rebeccarollinson replied to the topic 2nd SCT how long did everyone stay in hospital? in the forum Under 50s https://www.myeloma.org.uk/forums/topic/2nd-sct-how-long-did-everyone-stay-in-hospital/#post-136386 Sun, 10 Dec 2017 20:21:13 +0000 Hi Ann – thanks for asking I am doing good – in a week I will be celebrating 5 years since diagnosis and 4 years post SCT – still in remission and drug free! Must admit as time goes by I get tetchy thinking when will my run of luck will end – as always with MM mind games when you relapse and mind games when in remission(tut) but I’ll take it! I a…[Read more]

]]> a95e40f175b9216c6b64da661ca4d1d2 susie replied to the topic Decade & abdominal pain in the forum Treatment https://www.myeloma.org.uk/forums/topic/decade-abdominal-pain/#post-136336 Mon, 04 Dec 2017 18:51:30 +0000 Hi Peter

Thanks so much for your reply. I was in a panic about the pain but luckily it gradually wore off by the end of the weekend.

I’m sorry you are still experiencing problems and I hope it settles soon. Take care

susie

]]> 3a68bba85f03d07c19985a7e77537ac7 susie replied to the topic Hair Thinning in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hair-thinning/#post-136335 Mon, 04 Dec 2017 18:46:48 +0000 My hairdresser will not colour my hair either when I’m on treatment or for a long time after finishing.

]]> 127b823fd742a0817314f15d07e6fb62 susie started the topic Decade & abdominal pain in the forum Treatment https://www.myeloma.org.uk/forums/topic/decade-abdominal-pain/ Sat, 02 Dec 2017 23:07:47 +0000 I’ve had some abdominal pain which came on the day after I had the velcade jab. It’s not there all the time and feels like muscle strain or wind. I’m sure I’ve heard that velcade can cause abdominal pain. Has anyone experienced this problem.?

]]> e814c9fec7bf1bc2f7d1e40d7947cc21 rebeccarollinson replied to the topic Here we go again.... in the forum Carers https://www.myeloma.org.uk/forums/topic/here-we-go-again-2/page/2/#post-136039 Tue, 21 Nov 2017 20:59:49 +0000 Hi Maureen, so sorry to hear of Ian’s passing. You helped him throughout it all and right up to the end and no-one can ask for more from a partner. I hope the rest of your life is filled with happiness, laughter, adventures and peace. I already get the feeling you realise living is a privilege that musn’t be wasted so I know you’ll be okay.
Rebecca

]]> 76e845c70829008a40ab9f1fcea76d04 susie replied to the topic Here we go again.... in the forum Carers https://www.myeloma.org.uk/forums/topic/here-we-go-again-2/page/2/#post-136038 Tue, 21 Nov 2017 19:57:14 +0000 Maureen,

I was so sad to hear your news that Ian has lost his fight. My thoughts are are with you and your family.

susie

]]> 1f5947c70b38674c1666d0950a75bcc3 susie replied to the topic Maintenance ? in the forum Treatment https://www.myeloma.org.uk/forums/topic/maintenance/#post-135973 Thu, 16 Nov 2017 19:38:36 +0000 Thanks for your reply Michael. I so agree it has to change but haven’t a clue how to achieve it. I get angry when I think about NICE, who are interested only in the financial cost in, it appears, the short term. For example in the case of ixazomib, an oral drug, do they consider the monies saved in reduced hospital appointments.

All beyond me.

susie

]]> 5a1f27408efa62e2454764efb624c58e susie started the topic Maintenance ? in the forum Treatment https://www.myeloma.org.uk/forums/topic/maintenance/ Wed, 15 Nov 2017 18:42:38 +0000 Does anyone know if any maintenance is allowed (by NICE that is ) ?

I’m at first relapse and about to start cycle 5 of Velcade. Melphalan, and Pred. After two cycles my PP’s dropped from 54 to 28 and are now 15. Responce is certainly slowing down. The consultant told me today its unlikely to drop much further and next remission will not last as…[Read more]

]]> 641ab40ecc2630a5f2fd4f53d537c7dd rebeccarollinson replied to the topic Mum diagnosed 2 mths ago - what a rollercoaster ! in the forum Newcomers https://www.myeloma.org.uk/forums/topic/mum-diagnosed-2-mths-ago-what-a-rollercoaster/#post-135814 Mon, 06 Nov 2017 09:19:36 +0000 Hi Sara – my biggest coping mechanism during treatment was trying to control my mind and stop pondering on “what ifs” Andrey and take it Day to day. I started saving motivational quotes that became my mantra throughout in controlling my mind to “not go there” and stay in the moment. The main one I used was

“Worry does not empty tomorrow…[Read more]

]]> e9e0a8260729d4c801f19d3a40c412ec rebeccarollinson replied to the topic Mum diagnosed 2 mths ago - what a rollercoaster ! in the forum Newcomers https://www.myeloma.org.uk/forums/topic/mum-diagnosed-2-mths-ago-what-a-rollercoaster/#post-135809 Sun, 05 Nov 2017 21:15:12 +0000 Hi Sara – Mm is very individual together with your health to start off with/fitness/robustness. One week it can look bleak take a treatment that suits your MM and you can pick up and rally very quickly. What may appear very aggressive MM is only like that if you can’t quickly find the chemo that will work for you and yours. At 50, I was told a l…[Read more]

]]> b0e1ea4f7d40084db3f120c5b51a7a76 rebeccarollinson replied to the topic Due to have stem cell transplant Jan 2018 any advice about getting through it in the forum Treatment https://www.myeloma.org.uk/forums/topic/due-to-have-stem-cell-transplant-jan-2018-any-advice-about-getting-through-it/#post-135806 Sun, 05 Nov 2017 19:30:15 +0000 Tony – You are an inspiration – carry on carrying on!
Rebecca

]]> 9548eeaf10df624a344b35fb4b63451e rebeccarollinson replied to the topic Back again, in the forum General https://www.myeloma.org.uk/forums/topic/back-again/#post-135805 Sun, 05 Nov 2017 19:12:28 +0000 Hi Richard – sorry to hear about the Rev but let’s hope the next one is even better – will be interested to hear of option availability in Germany. Never ceases to amaze me how individual it all is as we started at the same time – we are all heading in the same direction but going along different routes/twists n turns – here’s hoping we enjoy a l…[Read more]

]]> 1bc636c70791977ba06de5e6376c813a rebeccarollinson replied to the topic Survey in the forum Off topic https://www.myeloma.org.uk/forums/topic/survey/#post-135804 Sun, 05 Nov 2017 19:04:31 +0000 Test only

]]> ffc2defc9e71c291ed4926b74b121cd3 rebeccarollinson replied to the topic Due to have stem cell transplant Jan 2018 any advice about getting through it in the forum Treatment https://www.myeloma.org.uk/forums/topic/due-to-have-stem-cell-transplant-jan-2018-any-advice-about-getting-through-it/#post-135763 Thu, 02 Nov 2017 09:15:33 +0000 Hi Emma – I am conscious now that I haven’t offered any practical advice on how to get through it easily – perhaps because I see MM more of a mental battle than a physical one. When you don’t feel like eating much – but know you need to keep your strength up – take in some little jelly, custard and rice pudding pots. They slither down and also in…[Read more]

]]> 8f09c453b6e935d0612f1c4324f318d7 rebeccarollinson replied to the topic Due to have stem cell transplant Jan 2018 any advice about getting through it in the forum Treatment https://www.myeloma.org.uk/forums/topic/due-to-have-stem-cell-transplant-jan-2018-any-advice-about-getting-through-it/#post-135762 Thu, 02 Nov 2017 08:37:43 +0000 Hi Emma, So sorry to hear you are going through this at such s young age. I suspect because of your age you will sail through the transplant- it sounds really scary but it is just abit more than the treatments you have had and sounds scarier Han it actually is. All being well you’ll be home in around 16 days – I had a count down calendar from 16 a…[Read more]

]]> e8e5107537a9e7914f67bfc50cab2a3c rebeccarollinson replied to the topic News about Wendy Duffield in the forum Under 50s https://www.myeloma.org.uk/forums/topic/news-about-wendy-duffield/#post-135760 Thu, 02 Nov 2017 08:08:16 +0000 Hi really sorry to hear about Wendy. I followed her blog and was acutely aware she hadn’t posted for a while. One helluva strong vibrant lady…and one more reason for us all to grasp life and live it large.
Take care
Rebecca

]]> 83f7ec06dd83e28d0b73eb4ecea23cb7 susie replied to the topic SCT - Relapse - Revlimid/Dex in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-relapse-revlimiddex/#post-135324 Sun, 08 Oct 2017 18:52:09 +0100 Hi Ian

I’m at first relapse and my paraproteins have been rising very very slowly over the past two and a half years since finishing induction Revlimid etc.

The MDT at the main hospital apparently said I was to be treated again when the PP’s reached 50. It got to 54 and I was started on velcade, melphalan and prednisolone. I’ve just finished…[Read more]

]]> 418e6ed84d0d29697bea17e397f66a92 susie replied to the topic The best hospital to treat Myeloma??? in the forum General https://www.myeloma.org.uk/forums/topic/the-best-hospital-to-treat-myeloma/#post-135236 Wed, 27 Sep 2017 17:15:22 +0100 Have you tried talking to your GP about your concerns. They might refer your dad for a second opinion.

I know how you feel though. I used to have a brilliant consultant who saw me threw MGUS then when it became active myeloma. I had absolute confidence in him. Sadly he retired at the beginning of this year. I am now in first relapse and am on…[Read more]

]]> eff6c4bf241406ae235d67a1ae447946 susie replied to the topic VPM in the forum Treatment https://www.myeloma.org.uk/forums/topic/vpm/#post-135072 Tue, 19 Sep 2017 17:54:10 +0100 C & Gregg

Thank you so much for your replies.

I shall be phoning the info nurse about my having am extra week break. I don’t see it can make a lot of difference. My PP’s are down to 18 from 54, so one extra week surely can’t be detrimental.

Unfortunately I’m not near a Maggie center. Wish I was as I’ve heard such good thing about them. I did go…[Read more]

]]> 90bf21edbd85c5662ddd1568644f5029 susie started the topic VPM in the forum Treatment https://www.myeloma.org.uk/forums/topic/vpm/ Sun, 17 Sep 2017 19:06:26 +0100 Hi

I’m half way through my 3rd cycle of velcade, prednisolone and melphalan at 1st relapse. It’s affecting me very badly and I’ve spent the last two and a half months feeling awful. It certainly doesn’t help living on my own, its on my mind the whole time and its made me so depressed with panic attacks. My GP has started me on citalopram but said…[Read more]

]]> 063cb2c493a3aeb951ba8702bc33a16f susie replied to the topic extreme confusion in the forum Side-effects https://www.myeloma.org.uk/forums/topic/extreme-confusion/#post-134801 Sat, 02 Sep 2017 18:00:31 +0100 Hello Peggy

I would suggest you call either 111 or an ambulance straight away. After 7 cycles of treatment,for your husband to suddenly start behaving in this manner suggests something is going on. Be on the safe side.

I wish you the very best and hope your husband is ok. Keep us informed how things go.

Best wishes

susie

]]> a3dac46ae2a268a3f135169aed8e9714 rebeccarollinson replied to the topic poor kidney function in the forum Related conditions https://www.myeloma.org.uk/forums/topic/poor-kidney-function/#post-134795 Fri, 01 Sep 2017 23:41:24 +0100 Hi Eve, I have not had dialysis tho at diagnosis time went to around 5! They repeated my blood tests as didn’t know how I was standing (I was a fit 50 yrs) I was told by someone on the forum (tho in a private thread) that kidneys could improve and his improved about 3 yrs later and he also told me of a friend who went through SCT on dialysis and 4…[Read more]

]]> a95064031d5c9822e5ef8c77dc2455f0 rebeccarollinson replied to the topic poor kidney function in the forum Related conditions https://www.myeloma.org.uk/forums/topic/poor-kidney-function/#post-134794 Fri, 01 Sep 2017 23:23:38 +0100 Oops for typos meant dialysis me not finalise me! Not ready for that yet!

]]> f4ec4389150656e86b89965a42502cc7 rebeccarollinson replied to the topic poor kidney function in the forum Related conditions https://www.myeloma.org.uk/forums/topic/poor-kidney-function/#post-134789 Fri, 01 Sep 2017 19:58:48 +0100 Hi Eve, I had my Sct with a kidney function of 20+ maybe 23ish – I can’t remember details now as it was 31/2 yrs ago. SCT carries greater risk with poor kidneys but you do have a lower dose of melphelan to compensate. The Sct did not impact the kidneys further and 31:2 yrs later with no further treatment they average around 32-37. It took about 18…[Read more]

]]> b04254dde28c01236ce8833122d45a17 susie replied to the topic Advice and opinions in the forum General https://www.myeloma.org.uk/forums/topic/advice-and-opinions/#post-134665 Thu, 17 Aug 2017 19:57:20 +0100 Hi, Had my appointment again today. Bloods very low, with Neuts now at 0.8, WBC 2.4, Plts 127. Despite this they went ahead and gave the velcade. The consultant did come and see me and he thinks its the melphalan causing bloods more than the velcade. He warned me that I’m at real risk of infection which I find very worrying. I just await next week…[Read more]

]]> 9b1e5e891e0f6bd36262e63cfbcc5ad7 susie replied to the topic Advice and opinions in the forum General https://www.myeloma.org.uk/forums/topic/advice-and-opinions/#post-134658 Wed, 16 Aug 2017 17:44:48 +0100 Thanks cygnet.

I will try the info nurses and see if they can suggest a way forward.

I didn’t get his name. He was Indian/Asian and didn’t speak particularly good English.

I shall ask to see my named consultant but whether they will comply I don’t know. Will give it a try.

Thank you for your good wishes

Best wishes

susie

]]>