Myeloma Forum | lizFirth | Friends Activity https://forum.myeloma.org.uk/members/lizf/activity/friends/ Activity feed for lizFirth's friends. Sun, 12 Apr 2026 03:46:48 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 954bb20c47f30d1f55b6e7001c242a78 Deborah Bone replied to the topic Stem cell transplant booked for Wednesday 9th July 2014 in the forum Treatment http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-booked-for-wednesday-9th-july-2015/#post-116426 Sat, 05 Jul 2014 16:43:51 +0100 Thank you hat is most helpful xxxx

]]> 405b6ac1bc114c242dbbd7b8b002f8fd Deborah Bone started the topic Stem cell transplant booked for Wednesday 9th July 2014 in the forum Treatment http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-booked-for-wednesday-9th-july-2015/ Sat, 05 Jul 2014 14:23:19 +0100 It’s only a few days now and I am pretty anxious. I have been through two rounds of DT-PACE now and the time has now come for my SCT. Please could anyone offer me any last minute advice. Is there anything I should remember to take into hospital with me? I am being treated at UCLH. My myeloma seems to respond pretty well to treatment but the…[Read more]

]]> d9cca014d283a37868f2ceabf4170ac8 Deborah Bone replied to the topic Any experience of DTPACE? in the forum Treatment http://www.myeloma.org.uk/forums/topic/any-experience-of-dtpace/page/2/#post-115289 Sat, 24 May 2014 09:25:43 +0100 I have just been through one round of DT-PACE and am due to start another round on Wednesday. I am being treated at UCLH. After the first round I was requested to book into Ambulatory care as I live more than 40 minutes from the hospital. I thought they were being rather over cautious booking me in to the NHS hotel just in case I got an infection…[Read more]

]]> 724ab5f2ae7a314af3375afa2b32dfd2 Deborah Bone started the topic MUK five trial have you any experience of taking Carfilmozib (Kyprolis). in the forum Treatment http://www.myeloma.org.uk/forums/topic/muk-five-trial-have-you-any-experience-of-taking-carfilmozib-kyprolis/ Mon, 13 Jan 2014 05:39:10 +0000 I have been excepted on to the MUK five trial. Has anyone else started on this trial or taken Carfilmozib? I would be very grateful for your experience.
Thank you
Deborah

]]> 4e164e85f106b4607a21b9e4e5b4d9c3 debontheweb started the topic It all seems a bit of a gamble - Any help appreciated. in the forum Treatment http://www.myeloma.org.uk/forums/topic/it-all-seems-a-bit-of-a-gamble-any-help-appreciated/ Mon, 06 Jan 2014 15:09:50 +0000 A year ago today, just a few days before my 50th birthday,I was diagnosed with full blown myeloma and started on the PADIMAC trial. The velcade did a great job even after just two cycles, although unfortunately, I had very painful neuropathy and it too me a long time to get myself off the Fentanyl patches I was given for the pain. I have had few…[Read more]

]]> 96432140a37424da4c4dd041b17303fc mariakennedy replied to the topic newly diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572/page/2/#post-87009 Thu, 11 Apr 2013 11:14:58 +0100 Sorry everyone if it looks like Ive replied several times but felt I had to reply to you all individually. As you can see Im very new to this site! Has made me smile today though

]]> f3b717e3e12ddc5ff1645f47845aba9e mariakennedy replied to the topic Sam has relapsed. in the forum General http://www.myeloma.org.uk/forums/topic/sam-has-relapsed#post-94429 Thu, 11 Apr 2013 10:50:03 +0100 Hi wendy
I'm am scouting around on this site with interest. I recently had CTD and stem cell harvesting and am debating whether to go ahead with transplant yet or not. I was interested as to what you said about FLC. on diagnosis my lambda flc were only 64, now after CTD they are 237 with PP less than 2. I wondered whether CTD caused the increase…[Read more]

]]> 87f2d7a21eb509df74d86fdbceee6fc4 mariakennedy replied to the topic newly diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572#post-87007 Thu, 11 Apr 2013 10:22:01 +0100 Hi to you two

Thank you for your reply and support. I apologise for not responding sooner but life has been a whirlwind since diagnosis. As an update I have had CTD and stem cells harvested and now deciding on whether to proceed with transplant yet or not. I do read this site on a regular basis and hope to give more input myself. It is…[Read more]

]]> f79cb6ffc52083be55fc979480b67143 mariakennedy replied to the topic newly diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572#post-87008 Thu, 11 Apr 2013 10:16:57 +0100 Thank you very much for your reply and I would like to firstly apologise for my very slow response. Unfortunately since diagnosis everything has been a complete whirlwind. As an update I have managed CTD and stem cell harvesting and on course for a transplant but havent decided whether to have this yet or not. I hope you are well and hope to be…[Read more]

]]> 23504b925a9633eb09ffcf65ff40e2be mariakennedy replied to the topic newly diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572#post-87003 Thu, 11 Apr 2013 10:13:36 +0100 Hi Jo

thankyou for your reply and I apologise for my very slow response. As an update I have had CTD and stem cells harvested and am now inline for a transplant in which I am still considering whether now is the best time. Its certainly a journey I never would have envisaged for myself but I have managed so far and have realised that this will…[Read more]

]]> fa27ce142632775ae949a272e4ae21d8 mariakennedy replied to the topic newly diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572#post-86998 Thu, 11 Apr 2013 10:10:04 +0100 Hi there Andy

Im sorry for such a delayed rsponse. Since being diagnosed life has been a whirlwind. Just an update for you, I have had CTD and stem cells harvested and currently in line for a transplant in which I am trying to decide whether the time is right at the moment. I shall keep in touch and read this site regularly. I hope you are…[Read more]

]]> fcb5b73e9b18b404e828b0b377cfbc47 mariakennedy replied to the topic newly diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572#post-86996 Thu, 11 Apr 2013 10:06:16 +0100 Hi Tom
sorry for such a late response. Life has been a complete whirlwind since diagnosis. Just to give you an update I have had CTD treatment and stem cell harvest and am due to have a transplant but havent decided as yet when I should have this. Thank you so much for your reply and support and I promise I will try to keep in touch.

Maria

]]> 85668450ba99e3cf81b1cfedd3fdea2b mariakennedy replied to the topic newly diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572#post-87001 Thu, 11 Apr 2013 10:00:10 +0100 Hi Ange

sorry my reply is so late. Since diagnosis everything seems to have been a bit of a whirlwind. To date I have managed my CTD treatment, have had stem cells harvested and am trying to make a decision about transplant! I wondered how you are getting on? We seem to have a bit in common with having a 13 yr old, working in hospitals etc..…[Read more]

]]> 658a50e29b3ea55e14787c659a42db56 Deborah Bone replied to the topic Velcade..............ups and downs !!! in the forum General http://www.myeloma.org.uk/forums/topic/velcadeups-and-downs-#post-94624 Wed, 20 Mar 2013 09:22:12 +0000 Hi Trish

I am on the PADIMAC trial and have had 10 Velcade injections. My paraproteins have gone down significantly and I am very close to complete remission. Unfortunately I have Neuropathic pain in my arms, legs and fingers so my chemo has been put on hold for now with the hope the pain will reduce and I can then go onto cycle $ with perhaps…[Read more]

]]> 820a7761a2816b04991ff5ed446b7bf3 Deborah Bone replied to the topic Just got a diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis/page/2/#post-87100 Mon, 14 Jan 2013 21:44:22 +0000 Thank you Helen you may have just saved my life as I am coming down from a large dose of steroids and feeling very low and despondent. Fingers crossed we will all get through this.

Best Wishes and Take Care

Deborah x

]]> d0f6a3cd686a8674172c3deca60320d3 Deborah Bone replied to the topic Just got a diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis/page/2/#post-87094 Sun, 13 Jan 2013 20:14:26 +0000 Thank you I have just looked it up looks great!

]]> 9245c8551e6abb2d80e9133217ae3e5a Deborah Bone replied to the topic Just got a diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis/page/2/#post-87091 Sat, 12 Jan 2013 05:42:44 +0000 Dear Megan

Thank you so much for the useful information. It looks like that as long as all my pre tests are ok and I sign the consent form I will start the first line of treatment on jan 28th.
I am hoping this will hold off the need of the stem cell replacement for some considerable time but it all seems a bit of a lottery!
I have heard a…[Read more]

]]> 650f744f26925d8d25305599385270ea Deborah Bone replied to the topic Just got a diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis/page/2/#post-87098 Thu, 10 Jan 2013 22:52:30 +0000 Thank you

]]> 78b274b93e9e68c7d076c655f2221a90 Deborah Bone replied to the topic Just got a diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis/page/2/#post-87096 Thu, 10 Jan 2013 16:06:49 +0000 Hi Jo

The lister is also my local hospital. I live in Hinxworth near Ashwell but work in Stevenage old town not far from the Lister. I am just trying to work out the logistics of travelling down so often although I am reassured by the things people have said already. I have also looked at the option of my husband driving down and parking at…[Read more]

]]> fe7a4434db4b8f3b77e0df1c131e04a6 Deborah Bone replied to the topic Just got a diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis#post-87087 Thu, 10 Jan 2013 06:27:18 +0000 Thanks Tom UCL seems a great place if you do have to go anywhere. I shall look out for you No doubt it will become my second home soon
Deb

]]> 6e6edb6084148376543135b7b8801c0f Deborah Bone replied to the topic Just got a diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis#post-87088 Thu, 10 Jan 2013 06:23:56 +0000 Thank you everyone for your kind replies. Yesterday I was back for my app at UCL I ended up having a bone biopsy, chest X-ray (due to rib pain) getting info about treatment options and a load of tablets,
The tablets I need to start today are Dexamethazone 20 x 2mg/day for 4 days, Ranitadine and Allopurinol. I am worried they will make me feel…[Read more]

]]> f9f59b058e264ff4e5545cb4ac6040a6 Deborah Bone started the topic Just got a diagnosis. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis Tue, 08 Jan 2013 17:53:14 +0000 Hello there
Sadly on Monday I received a diagnosis of Myeloma. Tomorrow I go back to the hospital to discuss treatment options and the next day it will be my 50th birthday. Somehow I don't feel like celebrating. I am trying to make sense of it all but the treatment sounds so scary and I feel so tired and mentally drained. I am in a good place…[Read more]

]]> 11ea6d219307dc17cc421f438cfe3ae2 mariakennedy started the topic newly diagnosed. in the forum Under 50s http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354021471 Tue, 27 Nov 2012 13:04:31 +0000 Hi everyone,
I have only recently been diagnosed with myeloma after 6 months of various tests and visits to Gp's, Physio and Consultants. I am only just turned 50 and did not realise that this disease affects so many young people. As with most people I am trying to come to terms with this diagnosis and how it will affect my lifestyle. I am…[Read more]

]]> 69f5f2ae3be7ccf1e5aed894f6ce217c mariakennedy started the topic newly diagnosed. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572 Tue, 27 Nov 2012 12:16:12 +0000 Hi everyone,
I have only recently been diagnosed with myeloma after 6 months of various tests and visits to Gp's, Physio and Consultants. I am only just turned 50 and did not realise that this disease affects so many young people. As with most people I am trying to come to terms with this diagnosis and how it will affect my lifestyle. I am…[Read more]

]]> 2e482d2f52cbe736a81b51e79fddcb03 Deborah Bone replied to the topic Related Conditions. in the forum Related conditions http://www.myeloma.org.uk/forums/topic/related-conditions/page/3/#post-105530 Tue, 21 Aug 2012 16:25:05 +0100 Hello

I am 49 yrs old and I have smouldering myeloma. I feel like admitting that is like going to alcohol anonymous! I am under Prof Yong at UCL so I'm in good hands. At the last count my plasma levels reached 39. I have just had an MRI scan and go back to see Dr Yong again on the 30th. I am symptom free but my mental wellbeing is suffering.…[Read more]

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