Myeloma Forum | Barbara Bennett | Activity https://forum.myeloma.org.uk/members/Babs/activity/ Activity feed for Barbara Bennett. Sun, 26 Apr 2026 02:46:32 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 013dc434a4908f3353cad8781be04b21 Barbara Bennett replied to the topic And cycle 8 begins in the forum Treatment http://www.myeloma.org.uk/forums/topic/and-cycle-8-begins/#post-117834 Fri, 29 Aug 2014 20:10:19 +0100 Hi ANdy,

I read with interest how you are doing on Pom/Dex, I am finding it exactly the same, the Dex is hard to swallow, 20tablets each Friday is so much harder for me to do than 10 each day for two days I was on before with velcade-which didn’t work at all for me.I always sweat badly when eating my main meal on the Friday, be it lunch time or…[Read more]

]]> bc1dcee7eb53b4272e0f4a745642e988 Barbara Bennett replied to the topic Revlimid in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlimid1368206134#post-102505 Wed, 15 May 2013 17:49:58 +0100 Hi Ali and you all,
I had a scare whilst still under Kings after my transplant so was not discharged from them till well after my 100 days, then my local hospital took me back and never mentioned any maintenance. So I continued four weekly bloods and assessments and Zometa till one day one of the trials nurses saw me in the waiting room and said…[Read more]

]]> 7436a9838bbe4bca81a46ae567f83827 Barbara Bennett replied to the topic Counselling for Henry in the forum General http://www.myeloma.org.uk/forums/topic/counselling-for-henry#post-95247 Wed, 15 May 2013 17:14:38 +0100 Hi Sarah and Henry,
I was going to make same suggestion as Tom, both our local hospital chemotherapy team and hospice have counsellors, if you have not been to a hospice before you need to be referred by your GP and then assessed by the hospice.
I do not have a support group close to me but my hospice runs a drop in morning where I get to meet…[Read more]

]]> c072d38369a376625f7b65c8e2762ae5 Barbara Bennett replied to the topic Full Remission in the forum Treatment http://www.myeloma.org.uk/forums/topic/full-remission/page/2/#post-102164 Tue, 07 May 2013 19:32:38 +0100 Hi Billy,
Good news with the remission, it is what all the family want to hear and
good luck with the SCT, it is hard as you will be feeling the best you have for a long time, but as every one has said it is worth it.

Hi Peter,
this is interesting re your cough, I too have had a cough since just before my SCT, possibly from the first…[Read more]

]]> 2302935f8ac1cf5008f84a106612fc10 Barbara Bennett replied to the topic On Tour in the forum Off topic http://www.myeloma.org.uk/forums/topic/on-tour#post-110742 Mon, 29 Apr 2013 20:16:09 +0100 Hi David,
I wish you a lovely tour and hope the weather is kind to you.
Love Babs. xx

]]> 3d55a40cadf26fe60e1708a63dc6b1b4 Barbara Bennett replied to the topic 70 Today in the forum Off topic http://www.myeloma.org.uk/forums/topic/70-today#post-110753 Mon, 29 Apr 2013 20:13:27 +0100 Hi Jean,
Happy Birthday to Frank,
Love from Babs. xx

]]> 785ffe5809365b2f6fca40d613e4d08c Barbara Bennett replied to the topic New in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new/page/5/#post-87565 Fri, 26 Apr 2013 21:13:16 +0100 Hi Ann,
On diagnosis I had daily visits from the district nurses to do my clexane injections, they arranged for the local occupational therapists to come out to see me and they arranged for me to have on loan, toilet raisers, the bed guard, perching stools for the bathroom and kitchen, trolly on wheels,and a man came to put hand rails up the…[Read more]

]]> 620df38a9a5f852ea3de87bd8ba3f026 Barbara Bennett replied to the topic New in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new/page/5/#post-87563 Fri, 26 Apr 2013 18:51:06 +0100 Hi Ann,
It might be that you have been diagnosed at early stage and this is why chemo not yet started, can you not ring the team and ask? , we all remember questions we wish we had asked after leaving the consultants appointment, after all there is a lot to take in.
I must admit that I was so ill at diagnosis that I had no idea what I was…[Read more]

]]> 68d2bbaf07c8741e3ac702cb0b79d4bf Barbara Bennett replied to the topic Lightly chained to the Roller Coaster Ride in the forum General http://www.myeloma.org.uk/forums/topic/lightly-chained-to-the-roller-coaster-ride/page/2/#post-94971 Fri, 26 Apr 2013 10:55:43 +0100 Hi Helen,
I've not been on here for few days due to getting over my chest infection and since Tuesday a frozen shoulder,seems so insignificant in comparison to your relapse, so sorry to read of this.
Lots of cyber hugs to you from me.
Love Babs

]]> bc29bfdf3a9800563ef67faa3dcc1c67 Barbara Bennett replied to the topic Insurance in the forum General http://www.myeloma.org.uk/forums/topic/insurance1366928559#post-95120 Fri, 26 Apr 2013 10:47:03 +0100 Hi Mavis,
Like Helen I too have got insurance through world first, a years cover also which is brilliant, you do need to ring them but they know all about myeloma which others dont seem to!
Good luck
Love Babs

]]> 8d22cf01efbc1f02fda8f9c24d80f963 Barbara Bennett replied to the topic New in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new/page/5/#post-87573 Fri, 26 Apr 2013 10:35:04 +0100 Hi Ann,
Like all before welcome to our club to which we all wish we never had to join, I was diagnosed by my GP which a consultant at Kings told me was very unusual as most GP's only have one myeloma patient in their lifetime as GP's,but luckily for me mine was brilliant, I started with back pain in November 2010 which I knew was not "NORMAL…[Read more]

]]> 673e2d73acb4f1801eb851ec33544a99 Barbara Bennett replied to the topic another revlimid/vorinostat query in the forum Side-effects http://www.myeloma.org.uk/forums/topic/another-revlimidvorinostat-query#post-105203 Tue, 16 Apr 2013 20:06:37 +0100 Hi Phil,
I used to come out in very dry blotches on my face which were very red and sore from the outset of starting on Revlimid and Vorinastat, then I had bad lung pains which were so bad I was admitted into hosp through A&E but all checked out with my health so we put it down to the pills, as it was only six weeks after my starting on the trial…[Read more]

]]> 8b28dfa95ce18c491c4ca242fb77b8d6 Barbara Bennett replied to the topic Anti Biotics in the forum General http://www.myeloma.org.uk/forums/topic/anti-biotics/page/2/#post-94850 Tue, 16 Apr 2013 14:26:07 +0100 HiTom,
You and me both, I too have a dreaded chest infection-n who gave me mine I too want to know!
We saw consultant on Friday morning and I said I had had awful cough for months now which was deffinately getting much worse, he sent me off for chest x ray, we then travelled on our way to the hotel for our weekend break away.
Cough just got…[Read more]

]]> d22c08e6c675096d69dc15720083bf50 Barbara Bennett replied to the topic Red hot cheeks in the forum Side-effects http://www.myeloma.org.uk/forums/topic/red-hot-cheeks#post-105194 Wed, 10 Apr 2013 18:56:07 +0100 Hi Debs,
I had my SCT 22nd March 2012,am too taking 10 mg of Revlimid and asprin only,said to be in "full partial remission", I too often have flushed cheeks, mainly noticed after I have eaten,but can be at other times too, but that could be more noticable due to the people sitting at the table with me.
Like you the SCT took me through the…[Read more]

]]> be7850ed446257430124f5ab5f57ff98 Barbara Bennett replied to the topic How long from taking Stem cells out to starting SCT? in the forum Treatment http://www.myeloma.org.uk/forums/topic/how-long-from-taking-stem-cells-out-to-starting-sct#post-102180 Mon, 08 Apr 2013 00:19:27 +0100 Hi Nikki,
In answer to your question re how your dad is now feeling during his SCT, this is quite normal for all of us who have undergone this procedure. The hospital team will monitor his temperature for early signs of infection and will act upon any immeadiately, the chemo given prior to cells being put back in is so strong it wipes the patient…[Read more]

]]> 00939ba9021f8749580a4cfef716c908 Barbara Bennett replied to the topic Two and a half years in the forum General http://www.myeloma.org.uk/forums/topic/two-and-a-half-years/page/2/#post-94744 Sun, 07 Apr 2013 23:34:00 +0100 Hi Eve,
I had Reiki for many years before I was where I am now, I also had 6 sessions of it at K&c after diagnosis where it is paid for by the cancer care club. I don't know if you are aware but they do Reiki and so very much more at the hospices for both cancer sufferers and carers, I always thought hospices were only for end of life care but…[Read more]

]]> 0f0fadb774daa2b68d9064dc1def45b9 Barbara Bennett replied to the topic Two and a half years in the forum General http://www.myeloma.org.uk/forums/topic/two-and-a-half-years#post-94731 Mon, 01 Apr 2013 20:03:26 +0100 Hi Eve,
Ah, I know many of you on here have much more experienced of myeloma than me, I was just trying to be positive for you and slim but now understand regarding the 2nd SCT.
I am pleased that just sharing this has helped, the support found here is just brilliant.
My thoughts are with both Slim and you,
Love Babs

]]> c1ad58b330e96ffb54f9d5557bdd63ce Barbara Bennett replied to the topic Two and a half years in the forum General http://www.myeloma.org.uk/forums/topic/two-and-a-half-years#post-94724 Mon, 01 Apr 2013 10:02:03 +0100 Hi Eve and Slim,
This is the first time I have used private messaging on here, wasn't sure how it works as am quite computer phobic, it is quite easy though. Just went in to my own profile and saw the one I sent to you, having now looked there is a box which will show me when you reply to me, will be interesting to see if I am somehow sent…[Read more]

]]> 83ec586d96a649e266bfc650d59f60fa Barbara Bennett replied to the topic Franks SCT take 2 in the forum Treatment http://www.myeloma.org.uk/forums/topic/franks-sct-take-2/page/4/#post-102071 Sun, 31 Mar 2013 23:57:11 +0100 Hi Jean,
It is early days after the SCT , I remember after mine I had no energy at all and even to walk around the room in the hospital was an effort. The physio's came daily and told me what exercises to do but to be honest I tried but it was just so exhausting!!!!! I remember the first time they walked me to the end of the corridor, I had to…[Read more]

]]> 205bc4b0b1508d4719d102719f8dd18f Barbara Bennett replied to the topic Happy 1st Birthday to my Stemcells. in the forum General http://www.myeloma.org.uk/forums/topic/happy-1st-birthday-to-my-stemcells/page/2/#post-94672 Sun, 31 Mar 2013 23:39:52 +0100 Hi Eve,
yes bloods and assesments and Zometa every 4 weeks and consultant every 3 months, I have private messaged you on here the details, we may well meet up at some time.
I have already met up with some very old work collegues who we meet regularily as they have to go into canterbury every weekday for injections! He has lukhemia .
We had…[Read more]

]]> f21928ddeb94e8ca89780b20034d5c0e Barbara Bennett replied to the topic Happy 1st Birthday to my Stemcells. in the forum General http://www.myeloma.org.uk/forums/topic/happy-1st-birthday-to-my-stemcells#post-94669 Sat, 30 Mar 2013 13:45:22 +0000 Hi All,
I feel good that I am able to put my current position re the MM on here, this site has helped me and so I hope I can help others too.
Since reading then joining this site I have soaked up all the positives which are such a different picture to the one which was painted to us at the time of diagnosis, like many others we first made the…[Read more]

]]> a8537c0d82e0edb5bee9f89cf0b19e1c Barbara Bennett replied to the topic New to this in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-this1362133361/page/3/#post-87333 Sat, 30 Mar 2013 08:42:07 +0000 Hi Jane,
Your post has brought back memories of this time for me, like you had to have pregnancy test at 53…….I was so ill at that time said it would be impossible but still had to get it done anyway!!!!! had test which confirmed I was pre menopausal and so had to have a test every time if I remember correctly for the next five treatments. Do…[Read more]

]]> 0e7ab5e58597427352dfc43733657477 Barbara Bennett started the topic Happy 1st Birthday to my Stemcells.. in the forum General http://www.myeloma.org.uk/forums/topic/happy-1st-birthday-to-my-stemcells Fri, 22 Mar 2013 13:12:30 +0000 Hi All,
For everyone on here but especially those just embarking on the stem cell journey.
Today is the 1st Birthday of my cells being returned to me last year. I can hardly believe it is a year since my stay at Kings, It was as Tom says doable, but by no means easy I would say but then I overstayed my time there due to having an infection in my…[Read more]

]]> b251179ea564a2d60f7915a4b6c305c0 Barbara Bennett replied to the topic More Personal Information Please in the forum Off topic http://www.myeloma.org.uk/forums/topic/more-personal-information-please#post-110695 Sat, 16 Mar 2013 18:40:51 +0000 Thanks Helen,
wow 3000 registered members.
I went to a support group meeting last wednesday and met just 2 fellow MM sufferers who said they read and look at this site but do not participate and so would not I presume have registered, I wonder how many others like them there are too!!
Considering on diagnosis I was told this is a rare cancer I…[Read more]

]]> 4811a38610124cbfd1c4e96acb475292 Barbara Bennett replied to the topic More Personal Information Please in the forum Off topic http://www.myeloma.org.uk/forums/topic/more-personal-information-please#post-110693 Sat, 16 Mar 2013 16:44:32 +0000 Hi Gill,
Its a good point you have made here, I also wonder just how many members we have on here! I know like I did, a lot of people read and watch before joining in, some I suspect may never join the forum to which we wish we never had to read or join!
Tom says you have a birthday soon, so do I, Infact I have 2 just around the corner – 22nd…[Read more]

]]> cf8ed0e9bbd60a0563fc2391821f05ad Barbara Bennett replied to the topic Elephant In The Room in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/elephant-in-the-room/page/2/#post-108145 Fri, 15 Mar 2013 21:32:55 +0000 Thank you Tom and Eve,
You managed to make me laugh after being very sad reading of the loss of Tinkerbell.
This site is everything to me,imformative, funny, sad, helpful to know the way I am sometimes feeling, be it good or bad is part of the MM journey.
I went with my husband the other evening to a support group where for the first time I…[Read more]

]]> 270f5c4bd340f77daf3bc8bf218d67d1 Barbara Bennett replied to the topic Curly Hair after SCT. in the forum Side-effects http://www.myeloma.org.uk/forums/topic/curly-hair-after-sct#post-105159 Tue, 05 Mar 2013 19:47:10 +0000 P.S.
I must update my photo as current one on here was taken way back in the summer ! 🙂
Babs

]]> 93ea19c3238c4d01ba6f5204e16cb71f Barbara Bennett started the topic Curly Hair after SCT.. in the forum Side-effects http://www.myeloma.org.uk/forums/topic/curly-hair-after-sct Tue, 05 Mar 2013 19:42:01 +0000 HI all,
Before I had my SCT I had not found this site and since my hair has grown back it has come through really curly!!! I have only just started to read that this seems to be the norm, I have to say I quite like not having to spend time brushing and drying my hair but can any one tell me does it eventually stop growing curly please?
Love Babs

]]> 00d0b4962887c7330262d1e57fae3590 Barbara Bennett replied to the topic Breaking the law in the forum General http://www.myeloma.org.uk/forums/topic/breaking-the-law#post-94548 Tue, 05 Mar 2013 17:50:04 +0000 Hi Eve,
I have a good friend who had a kidney transplant and her DLA stopped after the transplant because she was then deemed to be able to manage again as no longer having to have dialisis,also amputees loose it after getting a replacement limb, our STC does not do the same for us, most of MM sufferers who receive DLA get it due to the bone…[Read more]

]]> ee7e5b9b8c65d314024077b776f7c214 Barbara Bennett replied to the topic Breaking the law in the forum General http://www.myeloma.org.uk/forums/topic/breaking-the-law#post-94544 Mon, 04 Mar 2013 20:19:22 +0000 Hi Eve,
just watched the programme on catch up, very interesting.
Love Babs

]]> b6afdbdb94068e1c58f0b048fb965661 Barbara Bennett replied to the topic Pete's SCT - Done - now the recovery!!! in the forum Treatment http://www.myeloma.org.uk/forums/topic/petes-sct-done-now-the-recovery/page/2/#post-101843 Sun, 03 Mar 2013 20:14:58 +0000 Hi Ann and Pete,
I too had trouble swallowing after my SCT, the pineapple juice definately helped, and like Slim I also found drinking cold milk helped and I was given oramorph just before meals and as for the tablets, yes I too had trouble especially 1 little one which I took 3 times a day and hated because it always seemed to stick in my…[Read more]

]]> 3c8250df3c5647da79de6b0440b676d2 Barbara Bennett replied to the topic Disability Living Allowance in the forum General http://www.myeloma.org.uk/forums/topic/disability-living-allowance/page/2/#post-94521 Thu, 28 Feb 2013 22:51:28 +0000 Helen R,
The limit for savings is currently £16,000 for means tested benefits, the first £6,000 is totally disregarded and anything above to the limit is then taken into account,
Like wise you can get contribution based ESA and if you have a occupational pension this is taken into account too, the first £85 is disregarded then half the re…[Read more]

]]> b5d942c193ac366b2abe6ae1c9a3dc05 Barbara Bennett replied to the topic Disability Living Allowance in the forum General http://www.myeloma.org.uk/forums/topic/disability-living-allowance#post-94510 Wed, 27 Feb 2013 12:46:36 +0000 Hi Tom,
As everyone has said DLA can be given to us MM sufferers to aid our mobility and care needs, I too on the outside look normal and when sitting in the car can be taken for person with normal mobility, however it only has to be a little too cold and my back aches with pain, also I can walk but only short distances then my back aches so I…[Read more]

]]> 85100cc2b6bd95c408528212b79fb8b8 Barbara Bennett replied to the topic Three little words...... in the forum General http://www.myeloma.org.uk/forums/topic/three-little-words/page/2/#post-94463 Thu, 21 Feb 2013 18:58:24 +0000 Great News, so pleased for you both and so promising for everyone just embarking on this mm journey.

Love

Babs

]]> fa06d2c82c90c1ca0b795f50cd9db439 Barbara Bennett replied to the topic I was at Hospital Today and consultant said in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-was-at-hospital-today-and-consultant-said/page/2/#post-101715 Mon, 18 Feb 2013 17:50:36 +0000 Hi Tom,
Really good to read your post, it has been for me very reassuring to hear all the positive posts just like yours on here.
I hope it helps many others too who find themselves joining us on this journey.
Love
Babs

]]> ff18e09f98a60d86acd5f460d0e91ca4 Barbara Bennett started the topic More Positive News.. in the forum Treatment http://www.myeloma.org.uk/forums/topic/more-positive-news Mon, 18 Feb 2013 11:28:07 +0000 Hi All,
Last week was very busy for me, Tuesday bloods and assessments at Canterbury, Wednesday Kings,(IMEADIATELY GIVEN FACE MASK TO WEAR AS I HAVE TERRIBLE HEAD COLD), consultant said all my blood tests that day were NORMAL, he even looked amazed !! I then told him my plans to go to New York and Australia this year, he quickly said you should…[Read more]

]]> 0ff71f7c08d3f1ba855deb9b5ec54ea0 Barbara Bennett replied to the topic Question.....maintenance treatment in the forum General http://www.myeloma.org.uk/forums/topic/questionmaintenance-treatment#post-94411 Mon, 18 Feb 2013 10:29:16 +0000 Hi Vicky and Colin,
I was randomised to both Revlimid and Vorinostat and took them for 1 and half months but was very unwell, even hospitalised with chest pains so I stopped taking them both, after seeing my local consultant he wanted me to remain on the Revlimid but had to check first if I could change after being randomised, he must have been…[Read more]

]]> 627735d249e9eb148ece643f40268309 Barbara Bennett replied to the topic light chain myeloma in the forum Newcomers http://www.myeloma.org.uk/forums/topic/light-chain-myeloma#post-87199 Thu, 31 Jan 2013 00:05:25 +0000 Hi Ali,
Yes sorry not kept in touch since before Christmas, I was being very unwell to such an extent my hubby said I was as bad as before diagnosis, I missed all pre christmas meets with friends and was so fed up and as we had hotel booked for three days over christmas was worried I would be ill the whole time so Thursday before I just stopped…[Read more]

]]> 74486ac651f50b5566ba88c54b3711b2 Barbara Bennett replied to the topic light chain myeloma in the forum Newcomers http://www.myeloma.org.uk/forums/topic/light-chain-myeloma#post-87197 Wed, 30 Jan 2013 21:48:30 +0000 Hi Tom,
At the moment I am feeling the best I have since prior to diagnosis, planning on keeping this way as long as I can too.
I can drive short distances but need to be careful as if back starts to ache I can have problems with driving, so my husband has said he will come with me and drive me to the next meeting, it is not until March and is…[Read more]

]]> 8cf240e3e066c76ee72718102e4da6e0 Barbara Bennett replied to the topic light chain myeloma in the forum Newcomers http://www.myeloma.org.uk/forums/topic/light-chain-myeloma#post-87195 Wed, 30 Jan 2013 18:50:12 +0000 Hi Tom,
I currently go to my local hospital every 4 weeks for Zometa and have just started to go in for bloods and assessments every four weeks then two days later to collect my pills, until now I have yet to meet any one else there with myeloma! My nearest myeloma support group is at tunbridge wells which is about 35 to 40 miles away from my…[Read more]

]]> e65006f8e3826116461e1d916c31b4e7 Barbara Bennett replied to the topic light chain myeloma in the forum Newcomers http://www.myeloma.org.uk/forums/topic/light-chain-myeloma1359057068#post-87224 Wed, 30 Jan 2013 13:13:14 +0000 Hi Jenny,
I too have light chain myeloma, diagnosed July 2011, 6 courses of RCD from July to November and SCT March 2012, currently in full partial remission!
I was randomised to take both revlimid and Zolinza but was very ill and so stopped after 6 weeks and am now currently on day 13 of just taking revlimid as part of the maintenance regime.
Love Babs

]]> e96c91b146340199522654c041e66689 Barbara Bennett replied to the topic Phil's SCT Journey in the forum Treatment http://www.myeloma.org.uk/forums/topic/phils-sct-journey/page/4/#post-101298 Mon, 31 Dec 2012 13:34:22 +0000 Hi Megan and Phil,
I have just caught up with your thread here, I had my SCT at Kings in March this year and your daily update is bringing it all back to me.
As previously said all hospitals seems to do it a little differently, I had not found this site when I had mine but now I am on here I find it very helpful,I am finding how you and Phil are…[Read more]

]]> 6787d5ada9b3a3a430ca6334402d2a41 Barbara Bennett replied to the topic revlimid and vorinostat in the forum Side-effects http://www.myeloma.org.uk/forums/topic/revlimid-and-vorinostat#post-104982 Mon, 17 Dec 2012 22:08:36 +0000 Hi Ali, Graham and Tom,
Yes I too had anti sickness pills with all my CTD and SCT which I took religiously as hate being sick and they helped no end, I did have some left over from earlier this year and still in date so tried to take one but nausea came on too fast!
As for having novovirus, I looked it up on the web and concluded that I would be…[Read more]

]]> fa4ba161f3a62ec83452cc695e17e7fb Barbara Bennett replied to the topic revlimid and vorinostat in the forum Side-effects http://www.myeloma.org.uk/forums/topic/revlimid-and-vorinostat#post-104979 Mon, 17 Dec 2012 21:01:40 +0000 Hi Ali and Graham,
Day 1 Saturday of 2nd course ,took the capsules in the evening and about 3 hours later was very sick, came on very suddenly! sick every hour through the night except 5 am, last time was 6 am, weak all day Sunday and took capsules after dinner in the evening, about 3 hours later was sick again ! only the once this time…[Read more]

]]> 046d22244b7da8e704658d8c714af1a6 Barbara Bennett replied to the topic At a low point in the forum Carers http://www.myeloma.org.uk/forums/topic/at-a-low-point#post-106559 Fri, 14 Dec 2012 13:36:24 +0000 Hi Sue,
I was diagnosed July 2011 and had SCT March 2012,
My husband gave up work to become my full time carer last September, our life has been turned upside down, at one time I hardly left the house except to attend hospital, was on so much Oxy Contin and Oxy Norm I was not in control of myself,then I overdosed, my husband picked it up and…[Read more]

]]> 62fd9ace49fdd181cc895e6eed99accd Barbara Bennett replied to the topic revlimid and vorinostat in the forum Side-effects http://www.myeloma.org.uk/forums/topic/revlimid-and-vorinostat#post-104976 Fri, 14 Dec 2012 12:58:19 +0000 Hi Mavis,
I think rightly or wrongly If it was not for all the many MM sufferers who had not took part in EARLIER trials we would not have so many people being diagnosed early before the damage caused by this cancer, that is why I am doing the trials because I hope one day they can get to early diagnosis and stop it in its tracks.!
I could not…[Read more]

]]> d92326315dde7a541b640e9c58b9e307 Barbara Bennett replied to the topic SCT - Franks turn in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-franks-turn#post-101128 Fri, 07 Dec 2012 20:35:31 +0000 Hi Jean,
I had my SCT in March this year, I do remember being told to try and avoid getting colds or infections prior to the harvest and on the day they asked if I felt well, yes I did, (except for the bone pain due to the GCSF injections which went away almost imeadiately the harvest commenced.)They took blood tests and we had to wait to see if…[Read more]

]]> 0ca16930b85c8eea27cb1dfec276c4ea Barbara Bennett replied to the topic Happy Birthday in the forum General http://www.myeloma.org.uk/forums/topic/happy-birthday#post-93904 Wed, 05 Dec 2012 13:06:14 +0000 Many happy returns to your stem cells Tom, you are such a tonic to me and I am sure many others.
I have been sending my daughter birthday cards to celebrate her diagnosis of her diabetes and so am expecting her to now return the favour!
we have to celebrate how lucky we are to be living with this now mangageable condition, I read the other day…[Read more]

]]> 3aa3442b13dae1e4f78c48ca28e743d1 Barbara Bennett replied to the topic revlimid and vorinostat in the forum Side-effects http://www.myeloma.org.uk/forums/topic/revlimid-and-vorinostat#post-104974 Wed, 05 Dec 2012 12:39:26 +0000 Hi Guys,
Thank you for your replys.
Tom and David,
Vorinostat is the very latest drug on the myeloma xi trial.
Sorry for delay in replying but the pains got so bad my husband decided a trip to A&E was due, we decided to go to the hospital where I see my consultant and where the trial team are based.
we arrived at 6.45 in the morning, to be…[Read more]

]]> b782be15f81bbcc06b189293d2959056 Barbara Bennett started the topic revlimid and vorinostat. in the forum Side-effects http://www.myeloma.org.uk/forums/topic/revlimid-and-vorinostat Sun, 02 Dec 2012 23:19:07 +0000 I am at day 16 of revlimid and vorinostat and last night woke up with very sore lungs,today they have just become more painful,I have had a horrible dry cough for several weeks too, can anyone tell me if they had these symptoms when starting these maintenance drugs ?
Thank You
Babs

]]>