Myeloma Forum | susie | Friends Activity https://forum.myeloma.org.uk/members/susie/activity/friends/ Activity feed for susie's friends. Tue, 21 Apr 2026 12:11:48 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 a0a2adf99edfa5e15f977517cfb2dc9d AlisonDrackett replied to the topic WOW guess who got a "paraprotein not detected"? in the forum General http://www.myeloma.org.uk/forums/topic/wow-guess-who-got-a-paraprotein-not-detected/page/2/#post-112496 Wed, 05 Feb 2014 17:14:16 +0000 That’s fantastic news David, makes us all feel more positive.
Alison x

]]> fe198c4b9046ce80f638c8825fded7a2 AlisonDrackett replied to the topic Swollen right Leg in the forum General http://www.myeloma.org.uk/forums/topic/swollen-right-leg/#post-112209 Sat, 25 Jan 2014 15:19:10 +0000 Hi David
did your consultant consider and rule out a DVT (thrombosis)? If not and it’s still swollen and tender I would get a medical opinion promptly as they can be nasty and like Ann said easily dealt with.

Kind regards
Alison

]]> 344f95e6ff5ac45174fa441639a84f05 AlisonDrackett replied to the topic Kidney question plus SCT question in the forum Newcomers http://www.myeloma.org.uk/forums/topic/kidney-question-plus-sct-question#post-87394 Thu, 21 Mar 2013 19:45:24 +0000 Hi Rebecca,
before my SCT my creatinine was averaging 400 and my urea around 20. I would say it has improved since my transplant. I did not have dialysis during the SCT but they were very careful to give me lots of IV fluids and a modified dose of Melphalan.
I think the important thing is not to feel rushed into a decision.:-S Do you see a…[Read more]

]]> 687d93f5c1f2cd764c8e860fc550f44a AlisonDrackett replied to the topic my mum in the forum Newcomers http://www.myeloma.org.uk/forums/topic/my-mum/page/2/#post-87375 Sat, 16 Mar 2013 11:59:44 +0000 HI Jackie
I'm sorry that your Mum has had this diagnosis and it's such a shock for the whole family.
I was diagnosed two years ago and was on dialysis three times a week for a month. My blood levels improved by 50% and I was able to stop dialysis and although I have poor kidney function it's enough to get by on so that's ok! Hopefully your Mum…[Read more]

]]> 0d87b01e9522b1feb46fb28d3e72001f AlisonDrackett replied to the topic Kidney question plus SCT question in the forum Newcomers http://www.myeloma.org.uk/forums/topic/kidney-question-plus-sct-question#post-87389 Sat, 16 Mar 2013 10:35:52 +0000 Hello Rebecca,
I was diagnosed with IgG Lambda myeloma two years ago and my kidney function was extremely poor – creatinine 1000. I joined the Eulite trial and had extended dialysis (which I was able to stop after a month) and Velcade. My creatinie levels came down to about 500 and my renal consultant felt it was unlikely that I would see any…[Read more]

]]> 400ccdbd0417185da59c9e141e0f1be9 AlisonDrackett replied to the topic New to this in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-this1362133361#post-87293 Fri, 01 Mar 2013 13:10:34 +0000 Hello Jane,
welcome to the Myeloma club, no one wants to join but its very friendly and supportive. It must seem overwhelming to you and your family, it is hard to take in all the information as you learn about this condition..
I was diagnosed two years ago and have had CTD and recently a stem cell transplant. The hard thing was trying to…[Read more]

]]> dea5546228d3710880b4bb1d5e76e331 AlisonDrackett replied to the topic Chemo brain, chemo fog in the forum Side-effects http://www.myeloma.org.uk/forums/topic/chemo-brain-chemo-fog#post-105156 Fri, 01 Mar 2013 12:36:22 +0000 I've experienced some loss of concentration and a sense of 'vagueness' since my chemo.(Or it could be my age!) I caught the end of a discusion about it on the radio recently which I think was saying that it was a recognised condition but more research needed to be done. The effects wear off eventually but it seems to be variable. I did find this…[Read more]

]]> 9a1fde0b71320ea06bb2180be42314c5 AlisonDrackett replied to the topic Starting PAD in the forum Treatment http://www.myeloma.org.uk/forums/topic/starting-pad#post-101535 Wed, 23 Jan 2013 17:40:56 +0000 Hi Tom

what a pain that you are back on chemo, it's feels such a slap in the face to be back on treatment and 'reminded' that we have a condition to cope with.
Hope you will soon be feeling your positive self again. I was on PAD last year and apart from the usual dex effects (dex-fx !) I had no problems at all.
Hope it will be the same for…[Read more]

]]> b956926eea6f4ada67b4619075169d77 AlisonDrackett replied to the topic Remission in the forum Treatment http://www.myeloma.org.uk/forums/topic/remission1358340910#post-101519 Tue, 22 Jan 2013 17:53:25 +0000 HI Tina
that's great news about being in remission (not about the itchy rash!)I hope you have many trouble free months ahead.:-D
love Alison

]]> 29bb3323c8d000f55d9c05e8d6f20db6 AlisonDrackett replied to the topic Raise your hand if you hate dex lol in the forum General http://www.myeloma.org.uk/forums/topic/raise-your-hand-if-you-hate-dex-lol#post-94231 Sat, 12 Jan 2013 17:08:21 +0000 I hated the highs and lows of dex. I was so jittery on the 40mgs they halved the dose. Then when I complained of tremors and the low feelings they also tailed off the last doses over 3 days i.e took 10mg, 6mg, 4mg rather than 20 in one day, it did help!

]]> 7652a32db3bd6a097edf026bc82723f9 AlisonDrackett replied to the topic Just got a diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-got-a-diagnosis#post-87079 Wed, 09 Jan 2013 10:14:29 +0000 Hi
I'm sorry that you got such a horrid 50th birthday present! I found this forum so helpful and hope that you will too. As Jean said try to enjoy your birthday and be hopeful for your future because the outlook for people with myeloma is getting better all the time.
Love Alison

]]> 0c2d39a32d2f344521cd4afbf882b0fc AlisonDrackett replied to the topic hi from another newbie!!! in the forum General http://www.myeloma.org.uk/forums/topic/hi-from-another-newbie/page/2/#post-94059 Mon, 07 Jan 2013 12:35:01 +0000 Your results sound similar to mine. My last potassium was 4.7 and my eGFR was 14. I don't eat whole bananas but I might put a few slices on cereal. Ditto oranges and tomatoes,(not on cereal!) only one cup of coffee a day if that. I remember when I was on the renal ward and I asked for a cup of coffee there was a shocked hush before I was informed…[Read more]

]]> 5bee51a023e6aab44b06409040cb0acf AlisonDrackett replied to the topic hi from another newbie!!! in the forum General http://www.myeloma.org.uk/forums/topic/hi-from-another-newbie/page/2/#post-94057 Mon, 07 Jan 2013 11:58:00 +0000 Hi Steve,
I've been lucky re dietary restrictions as I don't have any at present. When I was first diagnosed the dietician put me on a low potassium diet. I queried it with her saying 'most people with cancer are encouraged to maximise their fruit and veg intake, lots of fresh organic stuff etc, and you're telling me to eat 3-4 portions and well…[Read more]

]]> 1041fc897e09984b2f4857cb376ed80e AlisonDrackett replied to the topic So Alone in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/so-alone/page/3/#post-108012 Sat, 05 Jan 2013 16:56:50 +0000 Dear Sue,
yes it's true that district nurses rarely do 'personal care' any more, if necessary you can have carers to help with that (but you may have to pay). If you can speak to the Macmillan nurse on Monday she can advise you on what help and services are available.(If you have to wait for an appointment, get back to your DN and ask her to…[Read more]

]]> 0e4ae0b85b89e3608fa06e4f169072a4 AlisonDrackett replied to the topic So Alone in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/so-alone/page/3/#post-108007 Fri, 04 Jan 2013 14:14:00 +0000 Dear Sue,
I am so sorry that you and Michael are suffering so much. I am a community staff nurse (district nurse)and I recommend that you ask your GP to make an urgent referral to your local DN to get them round ASAP.
They will assess all your needs and act as liason between you, the GP, Macmillan nurse etc. They will visit as often as you need…[Read more]

]]> 998681326a65a47847b68941e78d1ee9 AlisonDrackett replied to the topic Second anniversary visit to haematology in the forum General http://www.myeloma.org.uk/forums/topic/second-anniversary-visit-to-haematology/page/2/#post-94009 Tue, 01 Jan 2013 19:09:57 +0000 Glad to help celebrate good news. I too will have been diagnosed two years ago this January. Life is very precious and celebrations add extra sparkle! I wish you a Happy and Healthy 2013.
Alison

]]> 96928a81910139f656912d6763269490 AlisonDrackett replied to the topic hi from another newbie!!! in the forum General http://www.myeloma.org.uk/forums/topic/hi-from-another-newbie/page/2/#post-94055 Tue, 01 Jan 2013 19:00:13 +0000 Hi Steve
being diagnosed with Myeloma is a serious and scary thing but I hope I can offer some reassurance. I was diagnosed two years ago aged 48 and my kidneys were failing (creatinine over 1000). I was treated with dexamethasone, Velcade and doxorubicin and was on dialysis for four weeks. I was able to come off dialysis and my kidney function…[Read more]

]]> 1730351793330fd50df85ad5b57311b0 AlisonDrackett replied to the topic Coming to terms in the forum Newcomers http://www.myeloma.org.uk/forums/topic/coming-to-terms#post-86915 Thu, 15 Nov 2012 11:57:19 +0000 Hi Kes
I was diagnosed nearly two years ago and it certainly has its challenges!I did find that being able to stay at work (thanks to a very supportive manager)and trying to do 'normal' things really helped me.

I think everyone copes in different ways according to their personalities and what support they have. If you are assuming that…[Read more]

]]> 8949575cf0cdb7ba7f90c130ea6fb8d1 AlisonDrackett replied to the topic Has any one been on EPO in the forum Treatment http://www.myeloma.org.uk/forums/topic/has-any-one-been-on-epo#post-100132 Mon, 20 Aug 2012 17:06:00 +0100 Hi Jo,
I've been on epo for over a year and once you get used to giving yourself injections it's not a bother at all. The company that arranges the deliveries is Fresenius Medical Care and they are very organised. I have mine delivered to my place of work and they are packaaged in a cool box to keep them at the right temperature. They also…[Read more]

]]> 856ec728a3469ece6f9cbb05c3383601 AlisonDrackett replied to the topic A Step in the right direction in the forum Treatment http://www.myeloma.org.uk/forums/topic/a-step-in-the-right-direction#post-99304 Fri, 18 May 2012 06:06:11 +0100 Hi Tina,

I'm glad to hear that you're responding well to the CTD. I'm waiting for my blood results taken on Weds. I know we're on the same cycle so I think of you when I'm wide awake at 4am on dex days and anticipating the low days probably Tuesday!! The energy swings are hard to aniticipate aren't they?
Stay well,

love…

]]> 55bb22e86e837fb68fe148375e880cae AlisonDrackett replied to the topic Day one of CTD in the forum Treatment http://www.myeloma.org.uk/forums/topic/day-one-of-ctd#post-99229 Wed, 02 May 2012 09:24:08 +0100 Hi Tina,
I'm on day 7 of my first CTD cycle. Glad to read Eva's notes on the dex because I've noticed the swing from high to low. I got so much housework done at the weekend, I'd cleaned the kitchen by 8.30am! Now I feel a bit 'on-edge' and fuzzy headed!

It's great that we can all support one another, hope all goes well for you,…[Read more]

]]> 377250b7edbe1892d6b476cc3d551227 AlisonDrackett replied to the topic hi in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hi#post-85839 Tue, 24 Apr 2012 18:58:38 +0100 Oh of course, I was casting my mind too far back!!

]]> c6f98bff6ade1cd44ed662947af8592b AlisonDrackett replied to the topic hi in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hi#post-85837 Mon, 23 Apr 2012 20:30:42 +0100 HI Sue, I'm afraid that I can't put a face to your name, but It's nice to hear from an ex-colleaugue. I'm still at said establishment although it's all offices now. Do you live in the area?

It's a funny small world this, isn't it?:-)

]]> 21c0f894b5c5c85180f659814162d127 AlisonDrackett replied to the topic hi in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hi#post-85834 Sun, 22 Apr 2012 20:25:33 +0100 I guess you could take a notebook and write down things you would like to ask and try to find out later.

I don't know what other people think but I believe it may be harder to be the carer than the one who is ill. I have MM and am fortunate to feel better than my blood results suggest but I know my family and friends worry about me a lot.

]]> 9337109e972a990a762ed0e40a1a4fbb AlisonDrackett replied to the topic hi in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hi#post-85832 Sun, 22 Apr 2012 18:20:57 +0100 Hi Charlielouise,
this site is a brilliant place to meet people in similar situations and get support. You must be feeling totally overwhelmed at present but you will find that it gets easier to cope once all the information begins to 'gel' How lovely for your nan that you can look after her, that will be a great help I'm sure.

As for…[Read more]

]]> c5fe6805cc9361dd94f6fe580604ef36 AlisonDrackett replied to the topic Starting stem cell harvest next Monday. in the forum General http://www.myeloma.org.uk/forums/topic/starting-stem-cell-harvest-next-monday#post-92187 Sat, 18 Feb 2012 10:00:48 +0000 HI Terry,
I had a solid cannula in my left arm so couldn't bend it at all, but an 'ordinary' cannula in the right so that one I could move. A possible side effect of the harvest is low blood calcium which can make you feel 'muzzy headed' and gave me tingling in my arms. They give calcium to treat this but it ruined my ability to concentrate so I…[Read more]

]]> fda50c14576ab8e1bbcc0a12c30e1f3a AlisonDrackett replied to the topic update on henry in the forum Newcomers http://www.myeloma.org.uk/forums/topic/update-on-henry/page/2/#post-85294 Wed, 09 Nov 2011 23:16:40 +0000 thank you Eve, hope you are doing well too.
The decision has been made to harvest some stem cells anyway and then they will be on ice should a SCT be an option in the future. Looking forward to those G-CSF injections:-/.
Alison

]]> 57cc1d8e6967c5f5d75241f271df7229 AlisonDrackett replied to the topic update on henry in the forum Newcomers http://www.myeloma.org.uk/forums/topic/update-on-henry/page/2/#post-85291 Sat, 05 Nov 2011 17:27:12 +0000 Hello Sarah and Henry

this is an extreme way to meet new friends isn't it?!! I was diagnosed in January this year and was randomised onto a dialysis trial at the Churchill as the Myeloma had caused my kidneys to fail. I had chemotharapy as well and have been dialysis free and back at work full time since May.

The haematolgy ward does have a…[Read more]

]]> bdfd7fc42df94c0f4d98f61f7ef8d621 AlisonDrackett replied to the topic New to Forum in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-forum1316263779#post-85029 Sun, 18 Sep 2011 17:51:47 +0100 Hello Aileen,

After the shock of diagnosis this sites a bit like a life boat isn't it, just climb in and hold on tight!:-/

I was diagnosed in January this year and used to read a lot of the posts on this site but it took me ages to pluck up the courage to join in. I used to read information through my fingers – a bit like watching scary…[Read more]

]]> f8df5c01e6df8faf9f4eee9b4a67ef50 AlisonDrackett replied to the topic High dose chemo or not with renal failure. Any advice? in the forum Treatment http://www.myeloma.org.uk/forums/topic/high-dose-chemo-or-not-with-renal-failure-any-advice/page/2/#post-98101 Sun, 18 Sep 2011 17:41:58 +0100 Hi Jo and Scott

Thanks for replying to my post. Jo I hope you really enjoyed your holiday; I?ve just come back from a week in Guernsey where the sun shone for most of the time!8-)

Joining in with the discussion on meds, I take 4g of sodium bicarbonate a day which has reduced my potassium to normal levels. I also was having epo injections…[Read more]

]]> 8714e99d563e322e9922c831166332ca AlisonDrackett replied to the topic High dose chemo or not with renal failure. Any advice? in the forum Treatment http://www.myeloma.org.uk/forums/topic/high-dose-chemo-or-not-with-renal-failure-any-advice#post-98092 Fri, 09 Sep 2011 20:50:05 +0100 Hi Gill, Scott and David,

Thank you for the welcome to this unique club!

My consultant was very explicit regarding all the pro's and con's and agreed that it was not an easy decision to make and that I should 'go with my gut'.
At the moment my gut says no to Auto SCT as my renal function is aprox 10%. To get more time (and it does not…[Read more]

]]> 700987af2f71dae22a91c539da51bfc1 AlisonDrackett replied to the topic High dose chemo or not with renal failure. Any advice? in the forum Treatment http://www.myeloma.org.uk/forums/topic/high-dose-chemo-or-not-with-renal-failure-any-advice#post-98087 Wed, 07 Sep 2011 19:27:50 +0100 Dear Eve and Mavis

Thank you for your comments, it is nice to be part of a supportive group:-).

I did follow a link that someone posted to a site where a Dr Berenstrom (I think!) was expressing his expert opinion that SCT is becoming less essential because of the new drugs available. Because of the trial I was on I had Velcade as part of my…[Read more]

]]> 518ec9697fb51aea6255ffa6ac42137d AlisonDrackett started the topic High dose chemo or not with renal failure. Any advice?. in the forum Treatment http://www.myeloma.org.uk/forums/topic/high-dose-chemo-or-not-with-renal-failure-any-advice Tue, 06 Sep 2011 18:02:50 +0100 Hello everyone, this is the first forum I've ever posted on (and my typing is sooo slow!) I was diagnosed in January and was entered into a trial with long dialysis sessions and BDD chemo. All my focus was on getting over the shock of diagnosis, (renal failure? I thought I was a bit tired!)and achieving some kind of remission. So far so good as I…[Read more]

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