Myeloma Forum | SharonGrainger | Activity https://forum.myeloma.org.uk/members/SharonG/activity/ Activity feed for SharonGrainger. Tue, 21 Apr 2026 11:20:38 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 98862ef1a1b134c1e55adf46ac3b75c0 SharonGrainger replied to the topic Radiotherapy Appointment Tomorrow!! Yippee!! in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy-appointment-tomorrow-yippee/page/6/#post-98184 Sun, 09 Oct 2011 15:04:26 +0100 Hi Bridget
Have finally finished my velcade!! Although I know it will take me a week at least to start to feel human again, have now got to wait til the middle of Nov for my pet scan to see how well its worked as like you my pp's haven't risen.
I wish that they wouldn't leave us til we are desperate with pain before they do radiotherapy, I…[Read more]

]]> 82b65b1feb7fecff0f5a1fbafd3dd159 SharonGrainger replied to the topic Radiotherapy Appointment Tomorrow!! Yippee!! in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy-appointment-tomorrow-yippee/page/6/#post-98181 Sat, 08 Oct 2011 11:21:23 +0100 Hi Bridget

So glad to hear your pain is under control, long may it last! I don't know where I'd be without radiotherapy!

Hope you get the go ahead for the bendamustine, let us know how you get on

Love Sharon x

]]> cf8d42118e3e447e919df074bd16ee04 SharonGrainger replied to the topic Good news... Velcade 7 & 8 in the forum Treatment http://www.myeloma.org.uk/forums/topic/good-news-velcade-7-8#post-98271 Wed, 05 Oct 2011 17:08:20 +0100 Good for you Dai!!! I am glad for you that you don't have to have anymore velcade and that you have had a CR 😀

I hopefully finish my velcade cycle 8 tomorrow and I will be glad as I have had enough! I am soooooo tired! I hope my scan shows I have had a CR too, have got to wait until mid November for it though.

Wishing you a long…[Read more]

]]> 6de67ca9d8418570dfde6f144b8600e9 SharonGrainger replied to the topic Ecstasy for myeloma in the forum Treatment http://www.myeloma.org.uk/forums/topic/ecstasy-for-myeloma/page/2/#post-98081 Wed, 05 Oct 2011 17:03:04 +0100 Hi Eve
Sorry I haven't been on the site for a while, I do look in, but don't post very often :-0 . I also wasn't very well last week had temperature ,sore throat and lost my voice! So my velcade was delayed for another week so hopefully will have my last one tomorrow!!!!! Will be so relieved as I am so tired, even 20mgs of dex dosen't keep me…[Read more]

]]> 545576f305d05b454cf561db752301af SharonGrainger replied to the topic Ecstasy for myeloma in the forum Treatment http://www.myeloma.org.uk/forums/topic/ecstasy-for-myeloma#post-98075 Fri, 09 Sep 2011 20:16:35 +0100 Hi Eve

Yes its very difficult being on the other end!! I am 41, I was 39 when I was diagnosed, thats the hardest thing for me as I have 2 children, 15 and 8 and I probably won't see my youngest grow up :'-( .
I don't mind helping you with as much info as I can give, I did have radiotherapy on all three tumours, however I have some lasting…[Read more]

]]> 2084bfd9b42d4f7b8b7905dc0949cf06 SharonGrainger replied to the topic Ecstasy for myeloma in the forum Treatment http://www.myeloma.org.uk/forums/topic/ecstasy-for-myeloma#post-98073 Thu, 08 Sep 2011 18:05:47 +0100 Hi Eve
Sorry for not replying yesterday but felt really rough, I was ok for the first few cycles, but by cycle 5 I began to struggle especially since they introduced cyclophosphamide at cycle 5. Like Slim I have velcade on days 1,4, 8 and 11 of 21 day cycle with 20mgs of the dreaded dex on the day I have velcade and the day after and 500mgs of…[Read more]

]]> 57e082a55e8c3bb54e225aaa010e8460 SharonGrainger replied to the topic Radiotherapy Appointment Tomorrow!! Yippee!! in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy-appointment-tomorrow-yippee#post-98117 Thu, 08 Sep 2011 17:47:32 +0100 Bridget

I am so glad that they are finally doing something for you. I think its very wise to try hanging out for the RT and not to go down the methadone route, not wishing to be too negative about methadone but as I used to work as a staff nurse in a hospice and one of the consultants was very keen on the use of methadone for pain relief but we…[Read more]

]]> 3fa06042e0475815668ba0192b91faee SharonGrainger replied to the topic Ecstasy for myeloma in the forum Treatment http://www.myeloma.org.uk/forums/topic/ecstasy-for-myeloma#post-98067 Mon, 05 Sep 2011 13:30:25 +0100 Hi Eve

I am on my 7th cycle of velcade with cyclophosphamide. When I had my sct in Feb 10 I went the whole way having an allo sct with donated cells from my brother, which means I cannot have a 2nd sct. It failed fairly quickly with me developing a plasmacytoma on my spine in December and then 2 further tumours later I started velcade in…[Read more]

]]> f9133f730721a5fd118249b3d77fc125 SharonGrainger replied to the topic Ecstasy for myeloma in the forum Treatment http://www.myeloma.org.uk/forums/topic/ecstasy-for-myeloma#post-98064 Sun, 04 Sep 2011 17:10:03 +0100 It will be interesting to see what they say Tom, I will have to ask my consultant when I see him next what he thinks too as he is the main myeloma specialist in Birmingham!
Unfortunately I don't think I will be able to wait 10 years either Eve, I have IgA myeloma and it tends to be more agressive than some of the others and my allo transplant…[Read more]

]]> fb15541726492e054cfc33c63706ea10 SharonGrainger started the topic Ecstasy for myeloma. in the forum Treatment http://www.myeloma.org.uk/forums/topic/ecstasy-for-myeloma Sat, 03 Sep 2011 13:08:47 +0100 Not sure how many people may have seen this article but I am sure many of you will find it interesting!

http://www.bbc.co.uk/news/health-14572284

I know I haven't posted on the site much but I do look regularly and have been very saddened by some of the recent posts.

Love Sharon x

]]> 8c1ee63dc984082033b31af94180787d SharonGrainger replied to the topic Graft verses Host Disease in the forum Treatment http://www.myeloma.org.uk/forums/topic/graft-verses-host-disease#post-97791 Thu, 21 Jul 2011 06:17:55 +0100 Hi Shirls
I'm glad to hear that things are going well for you apart from the GvHD, but as you ssay that is a good thing! I haven't posted for a while as I have not been feeling too great on velcade, generally very tired, then I'm awake in the middle of the night thanks to the dex!!!!!
I had GvHD following my allo, mine appeared about 3- 4 weeks…[Read more]

]]> e3bfcfb833dff2763de4aaa7bad9a9dd SharonGrainger replied to the topic My brave husband Kevin has finally lost his battle with myeloma in the forum General http://www.myeloma.org.uk/forums/topic/my-brave-husband-kevin-has-finally-lost-his-battle-with-myeloma/page/2/#post-90466 Wed, 18 May 2011 16:03:49 +0100 So sorry to hear your news Susan, My thoughts are with you

Love Sharon x

]]> 6088ff42e2731bd256693fd8660c51a8 SharonGrainger replied to the topic My Wonderful Husband Patrick in the forum General http://www.myeloma.org.uk/forums/topic/my-wonderful-husband-patrick/page/2/#post-90437 Wed, 18 May 2011 16:01:50 +0100 So sorry to hear your news Tina, my thoughts are with you

Love Sharon x

]]> 09c12d2c9e35bc3d09b669074bc99427 SharonGrainger replied to the topic Just a query on Allo transplants in the forum General http://www.myeloma.org.uk/forums/topic/just-a-query-on-allo-transplants#post-90030 Sat, 26 Mar 2011 17:32:44 +0000 Hi Sandra

Well as you know I had mine done last year in February 2010, I was 39 when I was diagnosed and I decided to go straight for the allo (bull in a china shop approach!) so was still 39 when I had my transplant. My feeling was the younger and fitter I was surely gave me the best chance! Also only having the one brother who turned out to…[Read more]

]]> 30b77a04f538bf9fe99c3c7d19cc8966 SharonGrainger replied to the topic More radiotherapy and spinal cord compression in the forum Treatment http://www.myeloma.org.uk/forums/topic/more-radiotherapy-and-spinal-cord-compression/page/2/#post-97089 Thu, 17 Feb 2011 17:01:47 +0000 Hi Andy
What a shock for you! At least they took the right course of action and I'm glad you are back home like me! My oramorph hasn't been used for a week again, so I think the radiotherapy is doing its trick, I hope your radiotherapy helps the numbness in your legs, it can take a few weeks to fully have effect though. Wishing you all the best…[Read more]

]]> 25cc6c4dfc5b1de9c40c5bd828c47a08 SharonGrainger replied to the topic just a catch up with everyone in the forum General http://www.myeloma.org.uk/forums/topic/just-a-catch-up-with-everyone#post-89826 Wed, 16 Feb 2011 21:56:44 +0000 Hi Shirley
Glad to hear that things are still going ok for you! They are finally reducing me off cyclosporin too, although its only taken them 12 months! LOL! I think it has more to do with me needing the next course of treatment though!
Wishing you all the best
Love Sharon x

]]> 3007cf31dc72dd478012b18f15f968b7 SharonGrainger replied to the topic More radiotherapy and spinal cord compression in the forum Treatment http://www.myeloma.org.uk/forums/topic/more-radiotherapy-and-spinal-cord-compression/page/2/#post-97087 Wed, 16 Feb 2011 21:51:02 +0000 Hi All
Gaye I am glad they have sorted out a plan for your radiotherapy, it seems to have taken them a long time though. Glad you got your 2nd course of Pomalidomide delivered!
Jo this was the patient guide to spinal cord compression that I looked up on the NICE guidelines but you can just search the guidelines yourself if you want,…[Read more]

]]> d0a1c860f6691198c57c72560fe6b395 SharonGrainger replied to the topic More radiotherapy and spinal cord compression in the forum Treatment http://www.myeloma.org.uk/forums/topic/more-radiotherapy-and-spinal-cord-compression#post-97082 Tue, 15 Feb 2011 09:59:00 +0000 Yeah they have finally let me up again! The physio came round yesterday and after checking with the drs i was given the all clear to get up! Hopefully will be able to go home tomorrow when they have given me my last dose of radiotherapy.
Pam, you amaze me as you so have been through the mill with this disease and yet you still manage to look on…[Read more]

]]> e9e299b5f5fc8c36da22c37df9d2728a SharonGrainger replied to the topic Blooming Dex!!!! Again in the forum Side-effects http://www.myeloma.org.uk/forums/topic/blooming-dex-again#post-103741 Mon, 14 Feb 2011 09:32:45 +0000 Hi Bridget
I soooo know how you feel! I am also back on 40mgs dex and don't feel i had quite recovered from last months blast i received! I should have been trying on my bridesmaid dress this weekend…….. I will look awful by the time the wedding arrives in june! They should have asked my daughter instead!
Have as much as a moan about this…[Read more]

]]> a0861c1245ad9f907338ae638a96b9f7 SharonGrainger replied to the topic More radiotherapy and spinal cord compression in the forum Treatment http://www.myeloma.org.uk/forums/topic/more-radiotherapy-and-spinal-cord-compression#post-97079 Mon, 14 Feb 2011 08:11:11 +0000 Thank you all for your positive thoughts and wishes
I have to admit that the only reason I knew to quote the NICE guidelines was that i had been to see another Dr the day before about my pain and she told me too! I wouldn't have known to otherwise, but i did quite easily find it on the nice guidelines website!
I am back on the dreaded dex! So…[Read more]

]]> 33eb1ff10312cd017577df5afb07e7b3 SharonGrainger replied to the topic Velcade Experience? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-experience#post-103725 Sun, 13 Feb 2011 08:06:47 +0000 Hi all
well its looking more likely that I will be joining you all soon on this velcade experience as i now have had 2 different consultants suggest i may need systemic treatment after my radiotherapy :-S .
It is interesting to hear about having it subcutaneous as this could reduce the need to go into hospital quite so much, as I've managed to…[Read more]

]]> 06ba316c63794ea8da8accdc87427cc8 SharonGrainger replied to the topic More radiotherapy and spinal cord compression in the forum Treatment http://www.myeloma.org.uk/forums/topic/more-radiotherapy-and-spinal-cord-compression#post-97073 Sat, 12 Feb 2011 21:06:13 +0000 Hi Bridget
well I'm sure I'm going to that hot place that bad people go to!!!!!lol! I wouldn't wish what I'm going through at the moment on anybody else!
I have to have another 5 sessions of radiotherapy and i have no idea how long they are planning on keeping me on bed rest for, i am hoping only until i have finished the radiotherapy!
Hope…[Read more]

]]> 470f0237f1622a43e81dd2bf203d7312 SharonGrainger started the topic More radiotherapy and spinal cord compression. in the forum Treatment http://www.myeloma.org.uk/forums/topic/more-radiotherapy-and-spinal-cord-compression Sat, 12 Feb 2011 18:36:46 +0000 Hi all

Well we all seem to be having radiotherapy at the moment!
As some of you may know I had radiotherapy last month on a plasmacytoma on my lower spine. Things seemed to be going ok apart from the numbness in my leg. Until 2 weeks ago when I started having pain in the chest region of my back.
My consultant suggested a PET scan to try…[Read more]

]]> 039f6d947df21472f386d257984e8abc SharonGrainger replied to the topic Bone marrow biopsy in the forum General http://www.myeloma.org.uk/forums/topic/bone-marrow-biopsy1296241649#post-89797 Tue, 01 Feb 2011 21:00:52 +0000 Hi Sandie

I had my last biopsy at the hospital where they did by sct not my local hospital and they did offer me some sedation which as I'd never been offered it at my local hospital and had coped fine, so I thought I wouldn't need it!! I will next time! Also at my local hospital a nurse always helps the Dr and is there for you too, it was just…[Read more]

]]> 4f1c8daebb55125d21b8e18041223aa1 SharonGrainger replied to the topic Bone marrow biopsy in the forum General http://www.myeloma.org.uk/forums/topic/bone-marrow-biopsy1296241649#post-89793 Sun, 30 Jan 2011 08:57:14 +0000 Hi Sandie

How brave of your Mum to under go such an evasive procedure at 85, I have to say if I'd reached that age I think a few choice swear words would have told them where to go!!!!!
It is good to hear that the Dr's did listen to you and were sensitive to your Mum's needs at least. Like Bridget I have had varying experiences of BMB's, with…[Read more]

]]> 60ca0f389d55bc473a2e44b0ce4bed8d SharonGrainger replied to the topic Radiotherapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy1294964127/page/2/#post-96962 Fri, 28 Jan 2011 15:30:00 +0000 Hi Bridget

Thank you for mentioning DLA, but I do already get it! My GP was very good after my allo, I've just had the renewal form and had hoped not to renew it before all this! Oh well, I feel more justified for renewing it now.
I love your shoe story, I also have a passion for shoes! I am expected to wear some heels when I am bridesmaid…[Read more]

]]> 87890446ffc00cdfb2570d9494bcc556 SharonGrainger replied to the topic Radiotherapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy1294964127/page/2/#post-96959 Fri, 28 Jan 2011 09:48:15 +0000 Hi Bridget

Unfortunately I am still not able to drive! Its a nightmare! I am having to rely on my parents and husband to ferry me about. Either that or I have taken to walking everywhere I can, but that means my swollen leg is not getting better!!!! I can't drive unless the numbness goes or I buy an automatic car!! As I bought an new car…[Read more]

]]> 301c726346737ea29dcf3def767f4b13 SharonGrainger replied to the topic Radiotherapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy1294964127/page/2/#post-96956 Wed, 26 Jan 2011 20:20:17 +0000 Hi Bridget

Glad to hear that you have finished your radiotherapy. I hope it starts to help with the pain soon.
I have started to reduce my morphine down now, but still have no improvement in the numbness in my leg 🙁 I am really hoping its not permanent.
Good luck with the revlimid and hope the dex isn't too bad!

Love Sharon x

]]> 36a42a2a7c99449ba18f7e1ef24f7828 SharonGrainger replied to the topic I'M HOME in the forum Treatment http://www.myeloma.org.uk/forums/topic/im-home#post-96921 Sun, 16 Jan 2011 12:04:59 +0000 I'm afraid the trips to the hospital at the beginning are a nightmare! It does get better, but at the beginning you still feel like you are spending more time at the hospital than at home and I had a few admissions at the beginning for GvHD!

It does get better Shirley though, by last October I was on holiday with my family and you would not…[Read more]

]]> 4cee6a47c17ef0e72da80a55ff01e64c SharonGrainger replied to the topic Radiotherapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy1294964127#post-96941 Sat, 15 Jan 2011 13:53:55 +0000 Hi Bridget
I think ultimately I am glad I stopped in, it would have put so much pressure on my family taking me to each appointment (Its an hour each way!). And then getting home and my 7 year old may understand Mom is poorly- but only to a certain degree! I also needed my pain sorting out as I was in incredible pain when I was admitted, I…[Read more]

]]> a72279dc125535eb52fa87189b882b11 SharonGrainger replied to the topic Radiotherapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy1294964127#post-96939 Fri, 14 Jan 2011 20:49:05 +0000 Hi Bridget
I am pleased to hear that you are starting your radiotherapy. I also had 5 sessions and not over the weekend (even though I was still in hospital!). Please don't worry about it compared to most of the other treatments it seems a breeze! I am just waiting for it to kick in yet- I think thats the hard part!
Love Sharon x

]]> 494204ce6dc5e10284bde45540e43743 SharonGrainger replied to the topic I'M HOME in the forum Treatment http://www.myeloma.org.uk/forums/topic/im-home#post-96918 Thu, 13 Jan 2011 14:10:53 +0000 Shirley thats fantastic news, I'm so glad you are doing well.

Watch out for the dreaded GvHD though as I ended back in hoospital with it a week after my initial discharge! (Sorry I don't want to put a downer on things for you, but be aware!) I developed a rash on my neck and a high temperature.

Keep up the good work
Love Sharon x

PS…[Read more]

]]> 50a46439d556b1fcb3b7946f7bbe3939 SharonGrainger replied to the topic Relapse official in the forum General http://www.myeloma.org.uk/forums/topic/relapse-official/page/2/#post-89463 Mon, 10 Jan 2011 17:45:06 +0000 Hi Bridget
The radiotherapy hasn't been too bad at all! I had to go back under the ct scanner to be measured and now sport some lovely free tattooes so they know they are zapping me in the right place. I am only having 5 sessions for this tumour and i am only under the radiotherapy machine for a couple of minutes while they actually do it now.…[Read more]

]]> ac3994ab5202939d96761f8e85ac7e01 SharonGrainger replied to the topic Relapse official in the forum General http://www.myeloma.org.uk/forums/topic/relapse-official#post-89458 Sat, 08 Jan 2011 11:51:00 +0000 Hi Kieth
Sorry to hear about your relapse, I am in the same boat myself having just had the tumour at the bottom of my spine confirmed as a plasmacytoma and evidence of speckles of small plasmacytomas up my spine :'-( like you I am gutted. I am in hospital having radiotherapy at the moment and am waiting to see whether my consultant thinks I…[Read more]

]]> 1d4bb21934da78831dbfdffd52bdaef1 SharonGrainger replied to the topic Keep your fingers crossed for me please. in the forum Carers http://www.myeloma.org.uk/forums/topic/keep-your-fingers-crossed-for-me-please#post-105833 Fri, 07 Jan 2011 14:08:25 +0000 Good for you Min, I really hope you get it! My husband and I are coming to the realization that I will probably not get back to work, but at 40 things are a bit different for me! At least the insurance paid off the mortgage which has been a weight off our minds!
Love Sharon

]]> 48b1d4d7137acdc4282e561b8b16de59 SharonGrainger replied to the topic Second hurdle starts tomorrow in the forum General http://www.myeloma.org.uk/forums/topic/second-hurdle-starts-tomorrow/page/3/#post-89408 Thu, 06 Jan 2011 22:02:18 +0000 Will be thinking of you tomorrow Roz and your family. I hope the day goes as you would want it to for Michael.
Sending you hugs

love Sharon x

]]> 0fa054b42a0a62361bd47710b2e8f9de SharonGrainger replied to the topic update on allo sct in the forum Treatment http://www.myeloma.org.uk/forums/topic/update-on-allo-sct#post-96887 Wed, 05 Jan 2011 08:35:19 +0000 Lol sorry gill, like shirley I was quite proud of my dark (would have been very curly if I didn't straighten them!) locks, hence the pre-transplant photo. Fortunately for me they have grown back lovely and its time I found a new photo of me! I have always said I will resort to dyeing it if it starts to go grey! Hopefully at 40 I have got a few…[Read more]

]]> 22ed4fdf3d591b7b9526e7719b8a7640 SharonGrainger replied to the topic update on allo sct in the forum Treatment http://www.myeloma.org.uk/forums/topic/update-on-allo-sct#post-96885 Tue, 04 Jan 2011 19:07:15 +0000 Hi Shirley
so glad to hear that you are doing well! As I am sure you will remember how quick your hair grows back once it starts and may be it will grow back different this time, I just remember praying it didn't grow back grey!
Wishing you luck and all the best for the new year!
Love Sharon x

]]> a59f487d6276e9201c790c994cf4f37a SharonGrainger replied to the topic Pain that moves about in the forum General http://www.myeloma.org.uk/forums/topic/pain-that-moves-about#post-89364 Tue, 28 Dec 2010 19:09:02 +0000 Hi Keith

It sounds just like the pain I had when I was diagnosed. One day it would be the left side of my chest, the next day the right side! It puzzled all the doctors until somebody did my paraprotien levels!

Sorry, as it does sound like it could be on its way back again. Take the sedation if they offer you some for the bmb!

Love Sharon x

]]> 0310d7d7985b846d2ce854fb25a3aca3 SharonGrainger replied to the topic Michael passed away at 1.30am today in the forum General http://www.myeloma.org.uk/forums/topic/michael-passed-away-at-130am-today#post-89334 Fri, 24 Dec 2010 21:14:37 +0000 Dear Roz

I am so sorry to hear your news, but I agree with the others in that Michael is now at peace and that you will always have treasured memories of him. Try to think of him how he was before this dreadful illness took hold.

Love Sharon x

]]> 5e868a05bf157286a6fe8be66aea1884 SharonGrainger replied to the topic Had to come home after 7days and nights in the forum General http://www.myeloma.org.uk/forums/topic/had-to-come-home-after-7days-and-nights#post-89327 Fri, 24 Dec 2010 17:37:20 +0000 Dear Roz

you have had such a tough time and you should have no reason to feel guilty. You have been with Michael as much as you can, it is not going to help him if you make yourself ill by being there.
As a nurse who has worked in the local hospice for 10 years, I have seen relatives like you sit for many days and nights at their loved ones…[Read more]

]]> b1786d8e3a67a6c1308fb4ccfa324d61 SharonGrainger replied to the topic ALLO TRANSPLANT WENT REALLY WELL in the forum Treatment http://www.myeloma.org.uk/forums/topic/allo-transplant-went-really-well#post-96855 Thu, 23 Dec 2010 18:02:11 +0000 Hi Shirley

I'm glad everything is looking positive at the moment. I hope they get enough cells from your sister at the next attempt and that your appetite improves enough so you can enjoy some Christmas dinner ( although my thoughts on hospital food is it leaves a lot to be desired and no wonder none of us have any appetite while we are…[Read more]

]]> 371245a56903d819ff2d5dca479b6691 SharonGrainger replied to the topic Christmas in the forum General http://www.myeloma.org.uk/forums/topic/christmas#post-89297 Wed, 22 Dec 2010 21:57:27 +0000 The last 18 months since my diagnosis have definately been a roller coaster ride, one which I would preferably rather not be on! However, here we all are, so I would like to thank you all for your support, even if its just been that by reading your posts it makes me feel like I am not alone.
So I wish you all a merry Christmas and all the best…[Read more]

]]> 1897bba94d3ae71dcf5f7d37bc5b297b SharonGrainger replied to the topic Plasmacytoma following allo sct in the forum General http://www.myeloma.org.uk/forums/topic/plasmacytoma-following-allo-sct#post-89254 Wed, 22 Dec 2010 21:50:35 +0000 Hi Katie
My bloods have remained fine with both my para-protiens and light chains undetectable. I think this is why my consultant wants a biopsy. I had total body irradiation as part of my conditioning treatment for my allo and that has about a 5% risk of developing a secondary cancer. I wasn't brave enough to ask what else it might be if not…[Read more]

]]> a95aa4955d9f9260d9fad65cdf423f29 SharonGrainger replied to the topic Plasmacytoma following allo sct in the forum General http://www.myeloma.org.uk/forums/topic/plasmacytoma-following-allo-sct#post-89251 Wed, 22 Dec 2010 16:57:05 +0000 Thanks Gaye, it is as Bridget says a bummer! (in more sense than one as that is where this plasmacytoma is!) But I have 2 kids so Christmas will be as normal as possible for them.
I have the opposite problem to you in that my head is full of holes! Well my skull is full of lytic lesions so my skull x-ray looks like a holey mess- as my husband…[Read more]

]]> a219aeda9ad96035787f7b8aa189dcf6 SharonGrainger replied to the topic Plasmacytoma following allo sct in the forum General http://www.myeloma.org.uk/forums/topic/plasmacytoma-following-allo-sct#post-89249 Wed, 22 Dec 2010 14:10:17 +0000 Thank you all for your responses. Just knowing that somebody out there understands how I feel helps.
Katie, its interesting to hear that you also developed a lump after 18 months, although I am sorry you relapsed so soon. My consultant says if it is a plasmacytoma he will scan me for any further lumps or bumps! Unfortunately I have also had a…[Read more]

]]> 1ddcb82203b25f76aedd48bd1b815c25 SharonGrainger replied to the topic Catch Up in the forum General http://www.myeloma.org.uk/forums/topic/catch-up#post-89270 Tue, 21 Dec 2010 20:36:57 +0000 Hi Bridget

I am so sorry to hear that the velcade has not worked. I wish you better luck with the revlimid and for 2011.

Love Sharon x

]]> 66e1d0f7d4ac2fdb1330fefd24aec566 SharonGrainger replied to the topic Plasmacytoma following allo sct in the forum General http://www.myeloma.org.uk/forums/topic/plasmacytoma-following-allo-sct#post-89245 Mon, 20 Dec 2010 17:03:41 +0000 Thanks guys, yes we also thought that it was going to give me a long remission. I have had some complications with GvHD but I thought this was a good thing as it would also create the graft versus myeloma effect as well. We are hoping it is just a solitary tumour and radiotherapy will sort it, but my consultant wants me to have a biopsy just to…[Read more]

]]> 0b2bd210f13c46d33a44149290ad3702 SharonGrainger started the topic Plasmacytoma following allo sct. in the forum General http://www.myeloma.org.uk/forums/topic/plasmacytoma-following-allo-sct Mon, 20 Dec 2010 13:50:06 +0000 Hi all
I'm generally not one for posting but I know there are a few of you out there that have had allo sct's. I had mine in February this year, I developed pain in my hip and left leg at the beginning of the month, x-rays were clear, but an MRI shows I have a 2 x 4cm tumour on my sacral area of the spine. My consultant was surprised as my…[Read more]

]]> e35ef7c680342b3f597789970efc77b3 SharonGrainger replied to the topic MM hospital in Bangor area? in the forum General http://www.myeloma.org.uk/forums/topic/mm-hospital-in-bangor-area#post-89237 Mon, 20 Dec 2010 13:34:46 +0000 Hi Bella

My Sister-in-law's mother-in-law ( my husbands, sister's mother-in-law confusing I know!) lived on Anglesey. Sadly she died a few years ago from Breast cancer, but had all her treatment in Bangor and I've never heard my sister-in-law complain about the treatment she recieved. Sometimes the haematology department has a web site I know…[Read more]

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