Myeloma Forum | KathWilson | Activity https://forum.myeloma.org.uk/members/KWilson/activity/ Activity feed for KathWilson. Wed, 08 Apr 2026 05:49:22 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 32f3eb539f9f6d254d236e61c3d89463 KathWilson started the topic Kath (aka GrannyGrump). in the forum General http://www.myeloma.org.uk/forums/topic/kath-aka-grannygrump Fri, 07 Oct 2011 08:41:44 +0100 This is just a message to let everyone who talked to her know, that my lovely mum, Kath Wilson died 7th October. She was at home with her husband and daughter as she wished.

Thank you to all of you who chatted with her and supported her in any way.
Best wishes to everyone with this illness and their families.

Julie Smith (daughter)

]]> a5181faf78b1d081acb5d5fa00a203b1 KathWilson started the topic Losing my teeth!. in the forum General http://www.myeloma.org.uk/forums/topic/losing-my-teeth Thu, 07 Jul 2011 21:42:56 +0100 Hi Folks

Not been on for a while as have had a few grotty weeks. Partly, I think, side effects (mainly from the Dex) but also bad mouth infection. I have osteonecrosis so can't have teeth extracted so have to put up with the painful one until I can have the nerve removed.

I'm on my 2nd dose of antibiotics but the other day was quite…[Read more]

]]> 4aaab8e57fff8369b20c19d314a78e76 KathWilson replied to the topic Memory Book - right or wrong? in the forum General http://www.myeloma.org.uk/forums/topic/memory-book-right-or-wrong/page/3/#post-90713 Thu, 07 Jul 2011 21:39:39 +0100 Personally, I think a memory book is a beautiful idea and something for you all to treasure. There's so much children want to know, maybe not necessarily now but as they grow older. I wish my Mum had told me more about her life throughout the years before Alzheimer's took away her memory – (yes, a different situation I know but the same sort of…[Read more]

]]> cb41e35d356392a794027ba18bc58e22 KathWilson replied to the topic Twitches, jerks and vivid dreams in the forum Side-effects http://www.myeloma.org.uk/forums/topic/twitches-jerks-and-vivid-dreams#post-103982 Thu, 02 Jun 2011 08:33:39 +0100 Yes, I did have the bad twitches and did and still do have the vivid dreams. I feel the patches (Fentanyl) plus the oral morphine exacerbated these and made my slightly psychotic. I'm not on the patches now but still have the vivid dreams which are, as you say, exhausting. I've always had bad nightmares but the cocktail of drugs we have to take…[Read more]

]]> 4349697bd00633fd59c9e36ddd312cdc KathWilson replied to the topic My Visitor in the forum General http://www.myeloma.org.uk/forums/topic/my-visitor#post-90540 Fri, 27 May 2011 14:15:30 +0100 I've been on oxycodene for a few months now and am getting on fine with it – no adverse side effects that I can detect so far.

xxxxxxxx

]]> f8f979b28c43e9d217348e9d2c2e29ef KathWilson replied to the topic Abject Misery in the forum General http://www.myeloma.org.uk/forums/topic/abject-misery#post-90564 Fri, 27 May 2011 14:13:46 +0100 Sorry you've had such bad news! Nothing useful to say 'cept hang on in there.

xxxxxxxx

]]> 067a9d263cf36c709eced89c24f6e678 KathWilson replied to the topic Quietly Panicking! in the forum General http://www.myeloma.org.uk/forums/topic/quietly-panicking/page/4/#post-90340 Sun, 22 May 2011 22:10:39 +0100 Thanks for asking Jo – I've been totally zapped by meds this last few months. PP is rising and consultant has increased strength of my Revlimid and added in more Dex (I was on one pulse now on two and she wants me to make that 3) but now instead of having half the month when I'm okay-ish I only get a few days when I'm awake and lively enough to…[Read more]

]]> a2576b2c9b488432861c4208a3936bc2 KathWilson replied to the topic Great News in the forum General http://www.myeloma.org.uk/forums/topic/great-news#post-90480 Sun, 22 May 2011 11:11:59 +0100 😎 Great news!

xxxxxxx

]]> 46bc5e9f9bf83b70ff7ff069492dd142 KathWilson replied to the topic Quietly Panicking! in the forum General http://www.myeloma.org.uk/forums/topic/quietly-panicking/page/3/#post-90331 Sun, 22 May 2011 11:10:30 +0100 Great that the scan has cleared you and hope it settles – it's all a complete mystery why symptoms come and go for no apparant reason! It's hard to know when your 'good' days will be and it's natural to take full advantage when you get one but you always seem to have to pay a price for them.

Gaye, I'm so sorry to see that your RT didn't work.…[Read more]

]]> 66757875f463fe9e4db1da5fe58a289b KathWilson replied to the topic Need to offload in the forum General http://www.myeloma.org.uk/forums/topic/need-to-offload#post-90412 Sun, 22 May 2011 11:04:44 +0100 It's quite understandable that you're worried about your Rev 'holiday' and the unexplained pains. I hope it gets sorted soon.

xxxxxxxxx

]]> f06384dee7a991e26b185be4ac567309 KathWilson 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-90438 Sun, 22 May 2011 10:44:21 +0100 What sad news to read. I wish you and your family strength at this difficult time.

xxxxxxxx

]]> 91655894f05e8bc6b3c7ac4a9a026003 KathWilson 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-90467 Sun, 22 May 2011 10:42:11 +0100 I am saddened to read this – he was such a big part of the group. I wish you and your family strength at this most difficult time.

xxxxxxxxxx

]]> 4c1a32b1afee23004ddfbc449d459701 KathWilson replied to the topic Some good news at long last in the forum General http://www.myeloma.org.uk/forums/topic/some-good-news-at-long-last#post-90117 Fri, 01 Apr 2011 17:42:12 +0100 Great news!

xxxxxxx

]]> 60057bd3eed47decde9beea71216a7ab KathWilson replied to the topic Daily Mail Article in the forum General http://www.myeloma.org.uk/forums/topic/daily-mail-article#post-90150 Fri, 01 Apr 2011 17:40:36 +0100 Yes, it's like when you buy a new car, everyone else seems to have the same make/model/colour LOL!

xxxxxxxxxx

]]> 76c0812bfb1eb85a11f37c2092fa723d KathWilson replied to the topic Horror of Horrors in the forum General http://www.myeloma.org.uk/forums/topic/horror-of-horrors#post-90089 Thu, 31 Mar 2011 17:29:17 +0100 LOL, yes the automatic LOVE followed by a string of x's does seem to happen with e-mails – never mind, I'm sure your consultant appreciated it!

xxxxxxxxxxxx

]]> 12d7ae5444237532baf835de989dc627 KathWilson replied to the topic Just got the diagnosis in the forum General http://www.myeloma.org.uk/forums/topic/just-got-the-diagnosis#post-90130 Thu, 31 Mar 2011 17:28:00 +0100 As said above, you're in a good place for info and guidance. It is a big shock to start with and we all ask 'how long' but it does vary (I'm 9 years since diagnosis at age 53 myself) but when I looked for information (before I found this site) it looked very gloomy and I thought I'd be lucky to get 18 months.

So, take each day as it comes and…[Read more]

]]> f86c3df0b32175a18cd88c8a6866fa7c KathWilson replied to the topic Bone Pain in the forum General http://www.myeloma.org.uk/forums/topic/bone-pain#post-90034 Thu, 17 Mar 2011 18:23:49 +0000 Gaye, I know what you mean about avoiding the pain relief because you don't want to be stones out of your brain but if you start off with a low dose and see how that goes, you do soon get used to it and it WILL help until such time as your RT becomes effective.

What, if any, pain relief have you tried so far?

I'm on Oxycontin, 10mgs, twice…[Read more]

]]> 88481b1db3034aafde79e2bb4bbb412e KathWilson replied to the topic Pomalidomide (?sp) - is it only available for those in trials? in the forum Treatment http://www.myeloma.org.uk/forums/topic/pomalidomide-sp-is-it-only-available-for-those-in-trials#post-97223 Thu, 17 Mar 2011 18:18:16 +0000 Thanks Gaye – I'll check that out.

Yes Nigel, you should be interested. It's a further development after the Lenalidomide (Revlimid) but not yet available in the UK. This, along with another drug, Bendamustine, are 'in the pipeline' altho' my consultant says that, for me, the Pomolidomide holds most promise now that my Revlimid is losing it's…[Read more]

]]> 20007775aff6e0198cdff68920bfbcfc KathWilson replied to the topic The Joys of Revlimid!! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/the-joys-of-revlimid#post-103840 Thu, 17 Mar 2011 14:46:46 +0000 The overall tenderness does lessen but I found it was worse on the days when I had the Dex/Revlimid combo so I blamed the Dex (well I would, wouldn't I?)

I had a very itchy scalp too but didn't have a rash as such. I took an antihistamine which settled the itchiness and now I don't get that any more so don't need more antihistamines so I guess…[Read more]

]]> c65cbf693c7ab577910044d50e10c790 KathWilson replied to the topic Should he be in so much pain? in the forum General http://www.myeloma.org.uk/forums/topic/should-he-be-in-so-much-pain#post-89998 Thu, 17 Mar 2011 14:41:50 +0000 I would definitely say he should be on pain medication. The pain IS severe and as the treatment goes on should lessen, especially if he is put on a Zometa or similar drug (an intra venous infusion for the bones). If you have any worries whatsoever, don't wait for your next appointment, ring them as explain the problems.

Good luck.

xxxxx

]]> a4cf76c8b113c6934906513f6d48a6b9 KathWilson replied to the topic 4th treatment - velcade, dex, thalidomide in the forum Treatment http://www.myeloma.org.uk/forums/topic/4th-treatment-velcade-dex-thalidomide#post-97203 Thu, 17 Mar 2011 14:27:11 +0000 Maybe the bleeding is caused by the results of constipation as the drugs do tend to 'bind' you and when you do manage to go to the loo, it can result in very hard stools which cause bleeding and as you say his platelet counts are low, the bleeding may be worse because of that.

Hope he gets back on track soon.

xxxxxxxxxxx

]]> 00e8e7f830c2d33d88d0419607d3ccd3 KathWilson replied to the topic Spasms in the forum Treatment http://www.myeloma.org.uk/forums/topic/spasms#post-97183 Thu, 17 Mar 2011 14:24:14 +0000 I think it is a side effect but I also get spasmps in my hands when my calcium or potassium drop – what was your last blood test reading? Worth asking.

I also find if I take a painkiller which contains codeine it helps with the spasms.

HTH

xxxxxxxxxx

]]> 358b981febd81d65742c33e893c11257 KathWilson started the topic Pomalidomide (?sp) - is it only available for those in trials?. in the forum Treatment http://www.myeloma.org.uk/forums/topic/pomalidomide-sp-is-it-only-available-for-those-in-trials Thu, 17 Mar 2011 14:22:42 +0000 Hi

I asked my consultant about this when I saw her and she said it seems it will be a couple of years before it is available for general prescription.

Has anyone on here got it outside of trials and if so, how did you manage it? My Revlimid isn't doing the job now so any alternative is worth a try in my book.

Thanks in advance.

xxxxxxxx

]]> 06fd8f5fced3440061a3fa79b141c580 KathWilson replied to the topic Feeling Rough in the forum Treatment http://www.myeloma.org.uk/forums/topic/feeling-rough/page/2/#post-97120 Thu, 17 Mar 2011 14:19:50 +0000 [quote] Perhaps someone should open a restaurant for people who are taste compromised?? Could call it Th e Cardboard Cafe? Sorry I am in a silly mood today Hang in there Keith it does get better and you will struggle to remember how rubbish you felt !!love Bridgetx [/quote]

lol totally agree, hard to explain to anyone who hasn't been there…[Read more]

]]> cd4ffe997fa8b78e8d99b38a6ed29640 KathWilson replied to the topic Big hello one and all in the forum General http://www.myeloma.org.uk/forums/topic/big-hello-one-and-all#post-89973 Sun, 06 Mar 2011 22:16:01 +0000 I had been wondering how you were. My friend lost her husband to prostate cancer and she too said she didn't have time to grieve because of all the 'stuff' she had to deal with after his death.

it is very difficult.

xxxxxxxxxx

]]> f15c513013a7c40612260fa9ea9fb80f KathWilson replied to the topic Only Me !! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/only-me-#post-103781 Sat, 05 Mar 2011 23:59:55 +0000 Yup, my combo knocks me off my feet too – you just have to learn which are your 'good' days and work towards them, otherwise, she'll have to rest up and accept the inactivity, which isn't always easy I know.

xxxxxxxxx

]]> 2dba387256dd8c7071ff5d944d1c318d KathWilson replied to the topic Side Effects in the forum Side-effects http://www.myeloma.org.uk/forums/topic/side-effects/page/2/#post-103675 Sat, 05 Mar 2011 23:58:23 +0000 I find taking a pain killer that contains codeine (sp?) helps with the restless legs syndrome. You can buy them over the counter but it's better to get them prescribed with all your other 'stuff'!

xxxxxxxxxxx

]]> 1827bd4967c9614efaf3a7cdc84869dd KathWilson replied to the topic Bloody bras and rib pain! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/bloody-bras-and-rib-pain/page/2/#post-103818 Sat, 05 Mar 2011 23:56:57 +0000 Gaye, it took about 12 weeks for my RT to fully relieve my back pain but the effect has been lasting so it's worth the wait, altho' I hope yours works a bit sooner than that.

xxxxxxxxxx

]]> 14c84ddc33c8b1cbde6de5a8f14cd6e7 KathWilson replied to the topic Bloody bras and rib pain! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/bloody-bras-and-rib-pain/page/2/#post-103817 Sat, 05 Mar 2011 23:54:06 +0000 I had just the same problem with bras when I first developed MM. When I was x-rayed, it turned out that I had cracked ribs! Now, my rib cage has 're-set' and it more the shape of a bird cage then a set of ribs (good job I'm not a glamour model eh?)

I can also relate to the lost weight. I just cannot regain any of mine and I look like an…[Read more]

]]> 672179210b23d1c2268455b7dcfcc8b7 KathWilson replied to the topic Newcomer in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newcomer1297257922#post-84203 Sat, 05 Mar 2011 23:49:38 +0000 Welcome. Re questions, I can't help there but I'm sure they will forumulate as the days go by and there is a lot to take in intially so I advise having a wee note book or similar so you can write it down as you go along.

xxxxxxxxxxx

]]> 1c325eb3ffe90781a14c8dd83869da09 KathWilson replied to the topic Dad diagnosed last week in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dad-diagnosed-last-week#post-84255 Sat, 05 Mar 2011 23:46:05 +0000 Welcome.

I can understand your worries about him being able to take the medication as prescribed – it is a bit of a nightmare to start with.

Alternatively (or as well as the chart) as mentioned above, it may be worth considering asking to see the hospital social worker with a view to a carer calling once a day to supervise the…[Read more]

]]> 33a0a49d593f1b655a75f7f681cefb94 KathWilson replied to the topic Am new on here! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/am-new-on-here/page/2/#post-84224 Sat, 05 Mar 2011 23:42:25 +0000 Welcome. You'll soon have learnt a whole new set of words – it's amazing how soon you become familiar with it all.

xxxxxxxx

]]> 44c38d2e8c178bc07e59ac5922e83c8a KathWilson replied to the topic Another newbie. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newbie1297908141#post-84271 Sat, 05 Mar 2011 23:40:54 +0000 Welcome. This is a good group for letting off steam or just 'talking' so feel free.

xxxxxxxxxx

]]> 85fb250e51f13a6c77860753157dee6b KathWilson replied to the topic surgery resulting from MM in the forum Newcomers http://www.myeloma.org.uk/forums/topic/surgery-resulting-from-mm/page/3/#post-84195 Sat, 05 Mar 2011 23:39:03 +0000 Welcome.

No, I've not experienced spinal surgery but have had radiotherapy to my back.

xxxxxxxxxx

]]> ecf5ee6a6d1ac90d62045c78b8f0ad98 KathWilson replied to the topic RE: Starting a discussion... in the forum Newcomers http://www.myeloma.org.uk/forums/topic/re-starting-a-discussion#post-84312 Sat, 05 Mar 2011 23:37:57 +0000 Welcome. I hope you soon get some answers to your questions.

xxxxxxxxx

]]> 0387849b9281439ccf24a4af78cff762 KathWilson replied to the topic Hello everyone in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hello-everyone/page/2/#post-84331 Sat, 05 Mar 2011 23:36:29 +0000 Welcome. Good that you've got an early diagnosis. Ask away with questions, it's a brill group and someone will always try to help.

xxxxxxxx

]]> 671aaf68ecf0033f9c90249e2daf5159 KathWilson replied to the topic Hello New Arrival To MM Club in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hello-new-arrival-to-mm-club#post-84348 Sat, 05 Mar 2011 23:34:57 +0000 Welcome glad you got diagnosed early and have started treatment. Good luck.

xxxxxxx

]]> 7defe2869e6c0208511e494a34399d73 KathWilson replied to the topic Revlamid starts and what happened next. in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlamid-starts-and-what-happened-next/page/3/#post-97021 Sat, 05 Mar 2011 23:33:29 +0000 LOL re 'looks cheap'. I asked my neighbour to collect my prescription for me one month (it has to be ordered, our pharmacy doesn't keep it in stock) and she said "Oh, I didn't leave you medication on the step, I thought I'd wait until you came home." When I told her the one month's supply was £4,000 she said "Oh, my Goodness, if I'd known, I'd…[Read more]

]]> 3a110b96760d7112e41072684d295775 KathWilson replied to the topic Revlimid - When to take it in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlimid-when-to-take-it#post-97149 Sat, 05 Mar 2011 23:27:52 +0000 I always take mine in the morning with my Dex. Mind you, I'm sleepy even when I'm on my week 4 of the cycle where I don't take it at all.

xxxxxxxxxxx

]]> 1180ad5ca3f50a65b20c83187c23802b KathWilson replied to the topic Alternative and complementary therapies in the forum Treatment http://www.myeloma.org.uk/forums/topic/alternative-and-complementary-therapies#post-97176 Sat, 05 Mar 2011 23:26:02 +0000 Nope I definitely wouldn't risk taking anything else alongside the prescribed drugs and the interactions can be quite drastic sometimes. I do have faith in complimentary therapies but under these circumstances, they are not something I'd want to take.

xxxxxxxxxxx

]]> 70daa8bc8144d885e5475d0c17cf331f KathWilson replied to the topic Treatment, at last in the forum Treatment http://www.myeloma.org.uk/forums/topic/treatment-at-last#post-97165 Sat, 05 Mar 2011 23:23:55 +0000 He seems to have a positive approach and if/when the effects kick in then hopefully he will rest up and listen to his body.

xxxxxxxxxxxx

]]> cd3147e0acc7a93320d4bed7b0601f8c KathWilson replied to the topic 10 week check up since STC in the forum General http://www.myeloma.org.uk/forums/topic/10-week-check-up-since-stc/page/2/#post-89906 Sat, 05 Mar 2011 23:22:04 +0000 LOL, there's a sort of irony in being relieved to be told that we are 'just' old and creaky and finding that reassuring!

Glad it was nothing more complicated.

xxxxxxxxxxx

]]> 5307282be60673294f8903315c462a88 KathWilson replied to the topic Velcade Subcutaneously? in the forum General http://www.myeloma.org.uk/forums/topic/velcade-subcutaneously#post-89913 Sat, 05 Mar 2011 00:16:57 +0000 Well, licensed or not, in the circumstances, could your consultant not authorise sc injections? There are lots of drugs that are given on a 'named patient' basis because they aren't licensed, surely the method of administration should be the same? Worth an ask?

xxxxxxxxx

]]> 7ec7760cd91956caef719fbd6f612479 KathWilson replied to the topic Pain in side anyone else in the forum General http://www.myeloma.org.uk/forums/topic/pain-in-side-anyone-else#post-89055 Sat, 05 Mar 2011 00:05:18 +0000 I think asking for an x-ray is not unreasonable and should help your consultant decide what's going on. As said above, the pain should be kept under control wherever possible and so do discuss this too.

xxxxxxxxx

]]> 6bff6d325a5ceabbedacdee0c9b605db KathWilson replied to the topic 10 week check up since STC in the forum General http://www.myeloma.org.uk/forums/topic/10-week-check-up-since-stc/page/2/#post-89904 Sat, 05 Mar 2011 00:02:30 +0000 Great progress, well done! Keep up the good work.

xxxxx

]]> 8daaa45e299671c24f9cc148383cfebf KathWilson replied to the topic Looking for information in the forum General http://www.myeloma.org.uk/forums/topic/looking-for-information#post-89936 Fri, 04 Mar 2011 23:57:54 +0000 Gosh, no wonder you're confused and I can relate to the 'bad news' on some of the sites. You're best to stick with sites like this one with up to date and accurate information. I'm 9 years post diagnosis and I know some on here have been patients longer than that.

It is a very frightening thing at the start but you will get in the swing of…[Read more]

]]> 7d7c923c56081cd3205cbd1b9660d9b2 KathWilson replied to the topic Hi all sorry I have not been on here in a while...... in the forum General http://www.myeloma.org.uk/forums/topic/hi-all-sorry-i-have-not-been-on-here-in-a-while#post-89925 Fri, 04 Mar 2011 23:54:23 +0000 Have a great time – you deserve it! Well done both.

xxxxxxxx

]]> 7970f48a4cc6411ccb947e7f716883b8 KathWilson replied to the topic myeloma X1 trial in the forum General http://www.myeloma.org.uk/forums/topic/myeloma-x1-trial/page/2/#post-89873 Fri, 04 Mar 2011 23:50:22 +0000 With regard to holiday insurance, there's a list on this site of companies which will give you a quote for people who suffer from illness and more particularly, myeloma. You need to ring round as the prices vary wildly, also, I seem to have seen other posts regarding people who had good quotes from different companies so yes, you can get…[Read more]

]]> b0ca5c9bf3a8b1c95beab77ffc88c828 KathWilson replied to the topic Hereditary link???? in the forum General http://www.myeloma.org.uk/forums/topic/hereditary-link#post-89944 Fri, 04 Mar 2011 23:47:45 +0000 Weird this query 'coz I thought I'd replied to it (but must be something similar) about genetic links.

Firstly, I don't know the answer but I was told that it wasn't linked.

Secondly, I was, last year asked to take part in a large study which is now being carried out asking about my and my family's medical history and a sample was taken (I…[Read more]

]]> 643ae3768c5f950010637951ba860fc6 KathWilson replied to the topic Blooming Dex!!!! Again in the forum Side-effects http://www.myeloma.org.uk/forums/topic/blooming-dex-again/page/2/#post-103763 Thu, 24 Feb 2011 21:50:28 +0000 Thanks Jo,

I'm still hangin' on in here, altho' I do admit on my really bad days I do feel a bit worn out with it all but then, who doesn't at some point?

I'm hoping to keep plodding on for a while yet!

xxxxxxxxxxx

]]>