Myeloma Forum | AvrilRo55 | Activity https://forum.myeloma.org.uk/members/avrilro55/activity/ Activity feed for AvrilRo55. Tue, 21 Apr 2026 17:33:50 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 6d791ac9bfed139fd35a9ecebdc62dda AvrilRo55 replied to the topic Coping with dexamethasone in the forum Newcomers https://www.myeloma.org.uk/forums/topic/coping-with-dexamethasone/#post-125906 Wed, 20 Jan 2016 11:46:22 +0000 On the other side of the coin it might not be too bad as we all react differently. I used to take mine at about 6:30 in the morning- yes i was more tired than usual, but it did not keep me awake at night…..i did have slight mood swings but nothing major, just a bit bitchy when i shouldn’t be and my poor husband couldn’t do anything right!!! It…[Read more]

]]> c9834194275dac2f2dd2d87cb8ab557f AvrilRo55 replied to the topic A short post. in the forum General https://www.myeloma.org.uk/forums/topic/a-short-post/page/2/#post-125659 Fri, 08 Jan 2016 20:00:09 +0000 Hi Jan

took your advice and booked the info day in Norwich on 5 March!! I had my bone infusion yesterday and checked my bloods etc taken in December all within normal limits with the exception of my light chain which had risen to 600 (from 300 in October) which was  a shame. Still going on holiday on Tuesday so not going to think about til i…[Read more]

]]> a3dc2731b29e77588e3eba4fd3e68b14 AvrilRo55 replied to the topic A short post. in the forum General https://www.myeloma.org.uk/forums/topic/a-short-post/page/2/#post-125569 Sun, 03 Jan 2016 13:48:12 +0000 Hi Jan

yes, i will go to the info day, there is one in Norwich in March which is very close to whete i live. I got to be honest, up until now i have been burying my head in the sand not wanting to know too much, but i have just started to get curious. I am lucky i feel so well , i was left with after effects from radiotherapy and the subsequent…[Read more]

]]> 4427320fdb9a6f1989eb68e9eeddfb39 AvrilRo55 replied to the topic A short post. in the forum General https://www.myeloma.org.uk/forums/topic/a-short-post/page/2/#post-125565 Sat, 02 Jan 2016 16:51:06 +0000 Hi Jan

thanks for taking the time for your post.mimdo have an excellent understanding with both my Myeloma Nurse and my consultant at Addenbrookes. I due tosee them again March so will ask some questions. When my Myeloma was diagnosed two years ago my light chains were 350 all,other bloods good only problem was the solitary plasmacytoma which was…[Read more]

]]> 6461773abe7dae951da50ba5c264bcea AvrilRo55 replied to the topic A short post. in the forum General https://www.myeloma.org.uk/forums/topic/a-short-post/#post-125561 Fri, 01 Jan 2016 14:01:55 +0000 Another shrort Post. First of all Happy and hopefully healthy New Year to you all. I wonder if sso eone can answer this question. It is exactly two years since i was diagnosed with MM had 4 weeks radio therapy every day for a single plasmacytoma, then just 4 months of CDT. No medication at all since June 2014 and do not see consultant til we come…[Read more]

]]> f71f6fb12dec67458450e89059dadd54 AvrilRo55 replied to the topic Starting Stem Cell Therapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy-2/#post-124607 Wed, 14 Oct 2015 15:28:11 +0100 Hi Graeme

thought i would let u know i heard from my speciality nurse at Addenbrookes today that the full skeletal scan i had ahows no new lesions and everything looks stable. I see Jenny Craig on the 27th so don’t expect to go back on treatment yet. I hope u doing ok as well. All the best Avril

]]> 1cea875036af94fc6524b72d3bd8947a AvrilRo55 replied to the topic Starting Stem Cell Therapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy-2/#post-124570 Sat, 10 Oct 2015 12:47:02 +0100 Hi Graeme

What a small world. I have been under Jenny for a few months as Dr Vassillou has been on sabbatical for 6 months soing research into blood and bone marrow cancers! He returns early November. My next appointment is the 27th when i also have my bone infusion . I actually live in Norfolk. My Myeloma was discovered in February 2014 when i…[Read more]

]]> 50351b872463e5a64edcb802b2392adf AvrilRo55 replied to the topic Starting Stem Cell Therapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy-2/#post-124566 Fri, 09 Oct 2015 19:52:16 +0100

Hi Dino.  I am under Addenbrookes. They amazing. Who is your Consultant? I have a lot of dealings with the speciality nurse, Helen Goad, who i think is wonderful. My consultant is George Vassilou. I am also in remission at rhe ,oment after one course of CDT but not going to have a SCT. Good luck with the next part. Ww

]]> 41c31cee37c6fd9d4c1fadd00046f67b AvrilRo55 replied to the topic Not sure what is happening after my Plasmacytoma in the forum Related conditions http://www.myeloma.org.uk/forums/topic/not-sure-what-is-happening-after-my-plasmacytoma/#post-124538 Wed, 07 Oct 2015 11:41:22 +0100 As you rightly say, we are all different. Be interesting to hear how you progress. Wish you very good luck and good news. Avril

]]> 3ee31a3bea80d51368132f93bd8699ca AvrilRo55 replied to the topic Not sure what is happening after my Plasmacytoma in the forum Related conditions http://www.myeloma.org.uk/forums/topic/not-sure-what-is-happening-after-my-plasmacytoma/#post-124529 Tue, 06 Oct 2015 13:07:47 +0100 I was told that because i had a plasmacytoma they automatically do a bone marrow test as in most cases this is a precursor to myeloma and with me this was correct although my light chains were very low they erred on the side of caution and started me on 4 months treatment. I was given to understand this is normal when a plasmacytoma is discovered.…[Read more]

]]> 8d120d5521735b77b5bdea8e1c24dcb6 AvrilRo55 replied to the topic Not sure what is happening after my Plasmacytoma in the forum Related conditions http://www.myeloma.org.uk/forums/topic/not-sure-what-is-happening-after-my-plasmacytoma/#post-124518 Mon, 05 Oct 2015 19:31:13 +0100 I would bring this question up to your consultant or ring the Myeloma nurse. I had a plasmacytoma on my right octipal bone January 2014 had 5 weeks radiotherapy tomget rid of it. My light chains were about 350.  Was put on four months CDT bringing my light chains down to about 30 have had no further treatement since. However, my light chains have…[Read more]

]]> 44295aff023cca16760562340b2e589d AvrilRo55 replied to the topic Chemists - my own rant in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/chemists-my-own-rant/#post-124303 Mon, 21 Sep 2015 16:56:22 +0100 Gosh we have an inhouse chemist at our Coastal Villages Practice and they wonderful. I guess we just lucky. Feel for those of you who dont have this service. Dont need added problems.

]]> 29043a9e5b5f2caabf633bd9970a766c AvrilRo55 replied to the topic Update on Mikes treatment in the forum Treatment http://www.myeloma.org.uk/forums/topic/update-on-mikes-treatment/#post-124276 Sat, 19 Sep 2015 21:07:15 +0100 Thanks so much for this response, very informative. My original light chains were 347 discovered through a biopsy on my octipal bone which was asolitary plasmacytoma.  I have not had a virus or anything wrong with me for about 8 months, the. Only last winters cough etc., guess have to wait and see.  Thanks again for your response. I am under a f…[Read more]

]]> cf768c2a49d69b9869985136d93d94be AvrilRo55 replied to the topic Update on Mikes treatment in the forum Treatment http://www.myeloma.org.uk/forums/topic/update-on-mikes-treatment/#post-124274 Sat, 19 Sep 2015 16:07:17 +0100 Hi everybody

I wonder if any of u have the answers to some questions. I have been off treatment since June 2014 -( my light chains plateaud at 47) initially had 5 weeks daily radiotherapy for a solitary plasmacytoma then a round of CDT for four months. It now appears after 15 months that my light chains are rising!  Think they going to do full…[Read more]

]]> 8dc6149a152de6676bac3313496c2a99 AvrilRo55 replied to the topic Induction treatment in the forum Newcomers https://www.myeloma.org.uk/forums/topic/induction-treatment/#post-123976 Mon, 07 Sep 2015 19:16:09 +0100 Hi Stanley – i  am a bit of a coward and the thought of SCT terrifies me. What hospital are you under. I am with Addenbrooks. They been fantastic. Thanks for your input.

]]> 172e43d5fb94d4fed66a9dfa903033be AvrilRo55 replied to the topic Induction treatment in the forum Newcomers https://www.myeloma.org.uk/forums/topic/induction-treatment/#post-123974 Mon, 07 Sep 2015 18:36:30 +0100 Thanks so much for your comments. I am not going to go down the SCT route. I don’t think i could cope with it from what i have heard . My consultant has said even though i am over the “accepted” age for SCT – i am 73, but because i so well and fit he would not have a problem with me having it done. guess it just a personal thing and not for me.…[Read more]

]]> 29d6d5e9ac31a98ac7c6ce66b61eb32a AvrilRo55 replied to the topic Induction treatment in the forum Newcomers https://www.myeloma.org.uk/forums/topic/induction-treatment/#post-123970 Mon, 07 Sep 2015 12:22:36 +0100 I also have a question ? I had standard CDT treatment last year for four months, finishing in June and no treatment since, with the exception of Zometa bone i fusion 6 weekly. I last saw consultant in June and due back end of October. My light chains plateud  out at 37 last June and had risen to 100 in a year. I know in the scheme of things i…[Read more]

]]> 7b499e8ae465f63ecfd61642a173de5d AvrilRo55 replied to the topic The awful truth... in the forum Newcomers https://www.myeloma.org.uk/forums/topic/the-awful-truth/#post-123818 Sun, 30 Aug 2015 17:59:32 +0100 Yes do post his progress. Also take heart its the drugs causing his mood swings , my husband and family all thought they were walking on eggshells when i was on treatment. They couldn’t do anything right but i got over it when i came off of CDT. Best to you and your husband.

]]> 2acd6e9f368424df2a070d8428c8e358 AvrilRo55 replied to the topic The awful truth... in the forum Newcomers https://www.myeloma.org.uk/forums/topic/the-awful-truth/#post-123816 Sat, 29 Aug 2015 10:52:41 +0100 I am so soory to hear about ur husband Chris. i also had a Plasmacytoma, discovered whilst on holiday i. india. Needless to say I was hospitalised and then flown home for treatment. They wanted to operate on mine whilst in India, but I said no way. My daughtern the meantime did some research and found out more information. Spoke to a specialist…[Read more]

]]> ac39bd4119afed73ab9db0ab999b46f9 AvrilRo55 replied to the topic Travel Insurance in the forum General https://www.myeloma.org.uk/forums/topic/travel-insurance-5/page/2/#post-123675 Thu, 20 Aug 2015 12:08:45 +0100 Thanks so much for this info. Your dad sounds like me. I 73 not going to have stem cell treatment. Been of first round of treatment now for over a year . Bloods all good light chains just 102.  Nopains and back to doing normal things. See consultant again end of October  (4 months since last visit). Will try these other insurers. Thanks for te nfo.

]]> 4eb3c7862f214f3ecdbde2786a0e2260 AvrilRo55 replied to the topic Travel Insurance in the forum General https://www.myeloma.org.uk/forums/topic/travel-insurance-5/#post-123545 Thu, 13 Aug 2015 18:53:55 +0100 Avanti quoted me £820.00.  Think i must be older than u i am 73 , but i very fit not on treatment except Zometa light chains only 100 all other bloods good. No pain. I have been off treatment for a year see Consultant end of October, 4 monthly interval between appointments. Strange how they can quote me so much. I not had sct and do not intend t…[Read more]

]]> 2050c4a9b47326a7bb9446dde01511dc AvrilRo55 replied to the topic Travel Insurance in the forum General https://www.myeloma.org.uk/forums/topic/travel-insurance-5/#post-123536 Wed, 12 Aug 2015 15:02:19 +0100 I also used All Clear for my trip to Goa in January very good price; however when I enquired about America, as we have to go next year, they want £800 plus. I have been off treatment for a Year after only 4 months on initial treatment. Have no bone problems and consultant says I fit to travel. If anyone knows of another company would greatly…[Read more]

]]> f1724347a16ab9d9dd3a01899fcb37ff AvrilRo55 replied to the topic Hi in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hi-4/#post-123353 Sun, 26 Jul 2015 19:25:21 +0100 Hi Bijou

 

Good luck with your blood results. Try and get them to write them down for u. I have kappa light chain myeloma and they measure my light chains and other bloods. I dont have to go back until end of October. I have been treatment free for over a year. I decided SCT was not for me, so going with regular treatment. My light chains are…[Read more]

]]> e29ac3063fdf7cbc847cf6e560a02e67 AvrilRo55 replied to the topic Do you deal with a single consultant or a rotating team? in the forum General https://www.myeloma.org.uk/forums/topic/do-you-deal-with-a-single-consultant-or-a-rotating-team/#post-123334 Sat, 25 Jul 2015 13:54:16 +0100 I have seen the same Myeloma consultant and Myeloma Speciality Nurse (who i am sure has hidden wings) at Addenbrooks since first diagnosis in January 2014, with the exception of my last visit as my Consultant has taken 6 months sabbatical to do some research. He due back at year end. As i don’t have to go back until end of October I expect i will…[Read more]

]]> b262a92166b704913770dc983d170c84 AvrilRo55 replied to the topic Hi in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hi-4/#post-123333 Sat, 25 Jul 2015 11:10:03 +0100 Hi Bijou

 

so sorry to hear you have been diagnosed with Myeloma. Yes its awful the medication and the process we all have to go through but its not the end of the world! If u can, stay as positive as possible, even though u may have some awful side effects from the medication. I read your story with interest, i was diagnosed in early February…[Read more]

]]> d92930ed15c55486957a58fd7fbcc261 AvrilRo55 replied to the topic Awaiting consultation with haematologists in the forum Newcomers http://www.myeloma.org.uk/forums/topic/awaiting-consultation-with-haematologists/#post-121386 Sun, 22 Mar 2015 20:24:39 +0000 Where in the country do you live. I was seen within a week!

]]> 8ec39074cb30dfa92921f1540941c02f AvrilRo55 replied to the topic Benefit Assessmsent / Claim - Where do I go from here? in the forum General http://www.myeloma.org.uk/forums/topic/benefit-assessmsent-claim-where-do-i-go-from-here/#post-118869 Fri, 17 Oct 2014 12:58:50 +0100 I would suggest you get in touch with your local carers association. We have one in our village and she filled iut my forms enabling me to get a blue badge and attendance allowance.

]]> c9861874420bbfaf4788d64b25e4e33e AvrilRo55 replied to the topic Newbie in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newbie-2/#post-118532 Wed, 01 Oct 2014 18:20:16 +0100 I also live in Nofolk and was diagnosed in February with Myeloma. I ws taken illen route to my holiday in Goa and taken straight to hospital when we lanses . I had a scan which showed a plasmacytoma in the skull. Was flown home by air ambulance and admitted to Addenbrookes Cambridge who have been fantastiic, thats where tests showed i had early…[Read more]

]]> 0dbbd944793257be9453996bb080610a avrilro55 posted an update: Stage 1 Myeloma I am on my fourth month of CTD with […] https://forum.myeloma.org.uk/activity/p/25817/ Sun, 06 Jul 2014 13:03:23 +0100 Stage 1 Myeloma
I am on my fourth month of CTD with excellent results not too many side effects. Last month treatment in August, almost within normal limits after two months. Picked up very early due to plasmacytoma of the skull whilst on holiday in india . Had radiotherapy which cleared this up but they discovered borderline myeloma and decided…[Read more]

]]> 1