Myeloma Forum | rebeccarollinson | Activity https://forum.myeloma.org.uk/members/rebeccaR/activity/ Activity feed for rebeccarollinson. Tue, 21 Apr 2026 07:33:26 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 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]

]]> 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]

]]> 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]

]]> 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]

]]> 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]

]]> 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]

]]> 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]

]]> 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]

]]> 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

]]> 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

]]> 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]

]]> 73292a95df789720502c79e9b2301aa5 rebeccarollinson replied to the topic Remission periods in the forum Treatment https://www.myeloma.org.uk/forums/topic/remission-periods/#post-134318 Sun, 23 Jul 2017 14:22:24 +0100 Hi Mervin, Sorry to hear you are relapsing. As I am sure you know by now Mm is very individual and individually unpredictable so stats may or may not be relevant to you and yours. I have always been told the 1st Sct will give you the longest sct remission period and you can expect half of that again with the second and that is why those of less…[Read more]

]]> b02d2495064ad154269ab862721d46b6 rebeccarollinson replied to the topic Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/transplant/#post-133933 Tue, 20 Jun 2017 22:53:21 +0100 Hi – he is having an allo transplant then. If you look through the under 50’s section over quite a time period you may find useful insights into the Allo experience/dilemmas faced. I believe if you speak to the helpline they can put you in touch with someone who has gone through the experience – you may like to ask some questions on the under 50’s…[Read more]

]]> 20b9e6ab34a8b02d46e360f520b618d6 rebeccarollinson replied to the topic Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/transplant/#post-133924 Tue, 20 Jun 2017 13:17:25 +0100 Ok and he has myeloma also. Is the transplant an SCT i.e. They will harvest and collect his own stem cells and transplant them back in after the high dose therapy or is it an allo transplant i.e. They are using donor stem cells from a close relative or a stranger where there is a good match – at 35 he would be eligible for an allo I would presume.…[Read more]

]]> ceb33343b0b8223def1a02419a789b38 rebeccarollinson replied to the topic Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/transplant/#post-133920 Tue, 20 Jun 2017 12:26:51 +0100 Hi, Are you referring to an allo transplant? a full allo or a tandem transplant (of SCT followed by a mini Allo) or are there health complications that make a stem cell transplant riskier? They are all different so perhaps if you give a bit more background info re age/health/ mm status etc someone may have been in a similar position to share their…[Read more]

]]> b6d1060d43cf11b46401c804ce991c76 rebeccarollinson replied to the topic DT Pace in the forum Treatment https://www.myeloma.org.uk/forums/topic/dt-pace-3/#post-133271 Wed, 03 May 2017 14:43:18 +0100 Hi Lillian, Mm is a very individual disease and no 2 people will react the same. If Vdt hasn’t hit the spot I would think of it as just a different type of drug will suit better for his Mm. I believe dt pace is abit like sending in the heavy artillery so hopefully you will see great improvement and it will do the job for you both and give a long…[Read more]

]]> 3a5633cdf0d41f42f34802aa2c9c6c59 rebeccarollinson replied to the topic Initial diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/initial-diagnosis/page/6/#post-131532 Sun, 15 Jan 2017 13:43:26 +0000 Hi Stanley, Yes I am well until I hear otherwise – next appointment 1st Feb. I am almost forgetting my exact months of remission but now it’s over 3 years do feel a tad tetchy about how much longer I will have so have decided to really go for it this year in doing new things etc. Perhaps in doing so it may play a small part in keeping at bay – who…[Read more]

]]> a93e78ba126d6fdd37798e55ac280080 rebeccarollinson replied to the topic Initial diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/initial-diagnosis/page/6/#post-131530 Sat, 14 Jan 2017 21:33:44 +0000 Hi Stanley, glad to hear everything appears reassuringly okish – well at least not sinister. MM really is a very interesting study if it wasn’t so pertinent and close to home! It is so complex I fear I would not do well in an exam but hey I am living well with it and that’s suffice! Wow 25 months..time flies scarily so but it’s all a celebration…[Read more]

]]> 7bd540c2300b46c8c92beb5e0628f140 rebeccarollinson replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/2/#post-131529 Sat, 14 Jan 2017 21:21:05 +0000 HI Richard, this all sounds very encouraging and positive so well done to you. It does get easier as time goes on although when diagnosed it seems impossible to imagine. I am glad you are trying new things, the more the merrier, and trust me you will takes bits from each and they will help you through the inevitable down times. As an example of…[Read more]

]]> a40bdc9b5c72e63c6f3cbcbfd5c0ddc9 rebeccarollinson replied to the topic Newly diagnosed family member - best ways to support them in the forum Newcomers https://www.myeloma.org.uk/forums/topic/newly-diagnosed-family-member-best-ways-to-support-them/#post-131466 Tue, 10 Jan 2017 09:04:12 +0000 Hi Pepz, This is one hell of a shock diagnosis and a very complicated cancer – learn all you can if it helps you and so you can pass good snippets etc but do not bombard him with info but be ready if he asks. This is very important as imparting knowledge needs to be at a pace/when your father wants it – so make sure everyone respects this.…[Read more]

]]> 6119f9d8f82fbf8af02108968a670188 rebeccarollinson replied to the topic An improvement to posts stats? in the forum Off topic https://www.myeloma.org.uk/forums/topic/an-improvement-to-posts-stats/#post-131401 Wed, 28 Dec 2016 14:18:28 +0000 Hi susie, yes I am on health unlocked for kidney issues – don’t use it much and doesn’t have the same feel as this forum – shame if that is the case as i feel it will “dwindle” considerably in participation. Oh well, guess we’re adept at coping with change – albeit reluctantly! Happy New Year x

]]> 0ef25083712d3f4ef91d7841d2297767 rebeccarollinson replied to the topic An improvement to posts stats? in the forum Off topic https://www.myeloma.org.uk/forums/topic/an-improvement-to-posts-stats/#post-131399 Wed, 28 Dec 2016 12:41:07 +0000 Hi Andy, Great idea. I would also like to throw in the mix that I would like to be able to “follow” members so I am alerted to new posts so I don’t miss their progress and also want to support. Probably a big ask but it would be nice.

]]> 31d5122911830dbc418a49ff1781fb17 rebeccarollinson replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/#post-131392 Mon, 26 Dec 2016 22:16:52 +0000 Hi Richard, I should have said in my post I am now just over 4 yrs since diagnosis. Regards work I did 2 x 12 hr night shifts and then 6 days off. I never went back to nights as I could not afford to knowingly drag my body down and changed hrs to days and a different shift pattern. I had 6 months off since diagnosed in hospital because :- kidneys…[Read more]

]]> 72f82aa44350daa62ef2d2958fb64ca5 rebeccarollinson replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/#post-131383 Fri, 23 Dec 2016 21:48:28 +0000 Hi Richard, I was 50 when diagnosed at a critical stage of kidney failure – shock diagnosis etc – had 8 cycles of velcade/dex followed by SCT at xmas just over a year since diagnosis and currently still in remission and drug free. Kidneys took a big hit gfr now 32 but do not hinder my life tho will be problematic with further treatments and…[Read more]

]]> bc002ded797df713fafc30a9a6d470d2 rebeccarollinson replied to the topic Repreive in the forum General https://www.myeloma.org.uk/forums/topic/repreive/#post-130751 Mon, 21 Nov 2016 15:51:34 +0000 Oh dear, that all just sounds like cutting corners and saving money at a time when you don’t need it. Well hang on to the fact that if it gets too “disruptive” you’ll be on a side ward. The only thing with sharing a ward is everyone does tend to hog the shower/toilet (women do anyway) so I wouldn’t/couldn’t wait to use it. Perhaps they are giving…[Read more]

]]> b4c7e4dfd4f35bdf054e3607e265a3d1 rebeccarollinson replied to the topic Repreive in the forum General https://www.myeloma.org.uk/forums/topic/repreive/#post-130744 Sun, 20 Nov 2016 21:47:17 +0000 Hi Dean, sorry you’re not in yet – I had the same problem at Leeds – I had to have the chest port in before I was on the official “ready” list and had to phone up each day for a bed. This started early October – so could not go the gym or play tennis due to chest portal and actually went in mid December so was in at Xmas. I had not been on…[Read more]

]]> 32e72650b6c64b146a530d1f4a3a1bba rebeccarollinson replied to the topic A little update - seems a lot can happen in a short while. in the forum Treatment https://www.myeloma.org.uk/forums/topic/a-little-update-seems-a-lot-can-happen-in-a-short-while/#post-130559 Wed, 16 Nov 2016 17:25:25 +0000 Hi Andy,

Sounds like you need/deserve another holiday! Sometimes you read posts like this and think wow you’ve been through the mill and come through it and all’s well..great …but when you reread it and, for some, remembering time on treatment, it is one massive helluva trauma to go through from start to finish. Your line “I then had to tell…[Read more]

]]> c6742a876439e14d9b6cfedc9f07b369 rebeccarollinson replied to the topic "High Grade MGUS / MM" in the forum Newcomers https://www.myeloma.org.uk/forums/topic/high-grade-mgus-mm/#post-130403 Wed, 09 Nov 2016 21:14:44 +0000 Hi Debbie, welcome to the forum and I think you had the right approach to ignore the blood tests when MGUS but you appear to be one step further now so, again, you have the right approach to delve (at your own pace) a bit more into the world of MM. Must say didn’t know it could affect your sight so something new for me also. I was diagnosed at 50…[Read more]

]]> a6d668fda14ada125fdd7d9fb1b61544 rebeccarollinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/#post-130397 Wed, 09 Nov 2016 15:34:36 +0000 Hi, So great to hear from you at last …phew!… Wow 26 cycles – impressive – beating sepsis twice – wow even more impressive. Despite being dealt an unlucky hand I think lady luck is most certainly on your side and routing for you now. Glad to hear you are still enjoying travels and house moves(?). Keep carrying on carrying on!…oh, and don’t…[Read more]

]]> a2277f1db63be8cb859e90f9704b03c0 rebeccarollinson replied to the topic Initial diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/initial-diagnosis/page/5/#post-130337 Thu, 03 Nov 2016 23:11:54 +0000 Thanks Dean – you’ll be enjoying xmas too also. To be honest, I think Skype, phone etc is as good as visits when you have all the family to consider. I think it will be quite a strain for your wife and it is hard to be the one with the juggling act trying to be there for everyone. I was much happier knowing my daughter was ok and in a normal…[Read more]

]]> 36b42910b90f7e82a66d9cd6c46b3ecb rebeccarollinson replied to the topic Initial diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/initial-diagnosis/page/5/#post-130335 Thu, 03 Nov 2016 18:11:23 +0000 Thanks Stanley – will post if my crown slips.

Dean, good luck, the one piece of advice I give for those going into SCt is, and I say this with confidence due to your age, on average and with luck you’ll be out in around 16 days. I chose 16 days and did a little count down calendar. No matter how crap my day was when I crossed another day off and…[Read more]

]]> fc5f2a575929ea683523be9c419433de rebeccarollinson replied to the topic Initial diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/initial-diagnosis/page/5/#post-130305 Tue, 01 Nov 2016 19:57:39 +0000 Hi – perhaps yours are just more delayed and will disappear again then? Why don’t you ask on the Beacon for others experience of it occurring much later – I am sure you will get some good feedback. I will be 3 years post SCT at Xmas and had my bloods today so will hear next Wednesday of any change – I have now moved to a 4 monthly check but think…[Read more]

]]> a89f0cad042eee61e0868e7f2cc1b833 rebeccarollinson replied to the topic Initial diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/initial-diagnosis/page/5/#post-130295 Tue, 01 Nov 2016 11:01:37 +0000 Hi Stanley, Am sure you have seen this on the Beacon but have copied an extract below. Am sure there have also been discussion on their threads from people with similar developments – also think they class it as MGUS status rather than relapse if all else is good. Glad everything else looks ok.

Different M-Spike After Stem Cell Transplantation…[Read more]

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