Myeloma Forum | SusanSmith | Activity https://forum.myeloma.org.uk/members/Jentay/activity/ Activity feed for SusanSmith. Sun, 05 Apr 2026 15:01:06 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 6cc7b4654ec2980f54495fc8934685a4 SusanSmith replied to the topic Bad side effects on Revlimid/Dexamethasone in the forum Side-effects http://www.myeloma.org.uk/forums/topic/bad-side-effects-on-revlimiddexamethasone#post-105215 Sat, 20 Apr 2013 07:12:34 +0100 Hi Sue,
You don't say what dose of Revlimid and Dex you are on. I've been on Rev/dex for 28 months and in the first month found the recommended dose way too strong. Rev was dropped at my request to 15mg pd and dex to 20mg x first 4 days of cycle (I later dropped this to 10mg x 4days as it makes me feel very dizzy and shaky)

I also refused to…[Read more]

]]> 57f1222f6ba251f624ec3cf7ff62ed71 SusanSmith replied to the topic Revlimid Question in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlimid-question#post-102008 Sat, 23 Mar 2013 07:52:22 +0000 Hi Jill,
Sorry to disagree with your mum's doctors but Revlimid does cause diarrhoea even if it isn't listed on the side-effects sheet (hmm, must check that!) I suffer from it periodically, especially after I finish a cycle, and I know that the Revlimid is the cause as I don't take anything else apart from Dex and a low-dose aspirin. (I'm on…[Read more]

]]> 8f29bab34814a1d39e098c46afc41450 SusanSmith replied to the topic Everybody has a story... in the forum General http://www.myeloma.org.uk/forums/topic/everybody-has-a-story#post-94651 Sat, 23 Mar 2013 07:38:26 +0000 Hi Dai!
I was diagnised with MM at roughly the same time as you but my experiences are a million miles away from yours. After months of severe back pain, which I assumed was due to doing too much gardening etc following the death of my husband a few months previously, I was whizzed into hospital and underwent a full set of tests. Two weeks later…[Read more]

]]> 90876c83bd0776f1852f316507e83ed3 SusanSmith 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-105147 Wed, 20 Feb 2013 18:37:33 +0000 Hi Lorry,
Feeling spaced out while on chemo is pretty normal. It's also par for the course when you're taking steroids (you're probably having both – lucky you!)
Sadly, I don't have a cure for the feeling but it should get easier as your body adjusts to the various drugs, although Dex-head is something that still affects me and I've been taking…[Read more]

]]> 8b662726f4587c2db118c6ec298b7b23 SusanSmith replied to the topic Medications - Overdosing & Compatibility in the forum Side-effects http://www.myeloma.org.uk/forums/topic/medications-overdosing-compatibility#post-105130 Tue, 12 Feb 2013 18:45:47 +0000 Dai,
I have one rule: I don't take any meds that may be unnecessary. This means that I don't take any of the handful of pills doctors love to prescribe on a "just in case" basis.

I went through the list of meds when I started on Revlimid two years ago and told my consultant what I was willing to take and what I wasn't. I just take Dex for 4…[Read more]

]]> 21e9e9f2d3cbcf4aacb4568e3d8890a9 SusanSmith replied to the topic Peter has relapsed / info needed on Velcade in the forum General http://www.myeloma.org.uk/forums/topic/peter-has-relapsed-info-needed-on-velcade#post-94342 Sat, 09 Feb 2013 08:19:21 +0000 So sorry to hear that the SCT failed after a relatively short time. I had Velcade plus dex about 3+ years ago and it was extremely effective. I had 6 cycles and it's effects, post treatment, lasted 14 months. I felt a bit tired when I was on it and I did need a blood transfusion at one point but otherwise it was fine. I hope it works well for you…[Read more]

]]> 94c3b4ab8c6bdceb76e5195825336bea SusanSmith replied to the topic Hair in the forum General http://www.myeloma.org.uk/forums/topic/hair#post-93518 Sun, 07 Oct 2012 08:01:55 +0100 Hi Nettie,
So glad the oil is working for you too. It makes such a difference to how we feel if our hair is looking good, doesn't it?

Jen

]]> 8a7c6e0fbab10843b722e940752168e3 SusanSmith replied to the topic Hair in the forum General http://www.myeloma.org.uk/forums/topic/hair#post-93516 Sat, 29 Sep 2012 08:18:22 +0100 I'd recommend L'Oreal Extraordinary Oil. It's a light flower oil, not at all greasy, which you apply to either wet or dry hair. I rub a couple of drops between my palms and apply it to my hair before I dry it. Another tip is to lower the heat on your hair dryer to a medium setting.If it's too hot then it will make your hair drier than…[Read more]

]]> f4cec1490f44fd5a7f208dbb869e6148 SusanSmith replied to the topic Zometa - is this available on NHS in the forum Treatment http://www.myeloma.org.uk/forums/topic/zometa-is-this-available-on-nhs#post-100430 Thu, 06 Sep 2012 08:12:32 +0100 Hi Gill,
I've been having monthly infusions of Zometa for the past four years via the NHS and I've been told that I will continue to have them for as long as is necessary. Cost has never been mentioned so I had no idea that Zometa was more expensive than anything else. Research has shown that Zometa works better for people with mm than other…[Read more]

]]> 2de348aadca3162bb12050bce212b10c SusanSmith replied to the topic Dex Dosage in the forum Treatment http://www.myeloma.org.uk/forums/topic/dex-dosage#post-100010 Tue, 24 Jul 2012 08:06:50 +0100 Hi Keith.
I have to admire your fortitude if you are managing to take all that Dex! I refused point blank to take 40mg of Dex for 4 days each month at the start of my treatment as I know what it does to me. I took 20mg x 4 days and recently have dropped it to 10mg x 4 days. How long is this regime of yours going on for? It seems very harsh to me.

Jen

]]> 9fcf71f73ef82ba74a3019e470fae137 SusanSmith replied to the topic Tiredness /Fatigue in the forum Treatment http://www.myeloma.org.uk/forums/topic/tiredness-fatigue#post-99664 Mon, 02 Jul 2012 08:17:12 +0100 Hi Keith, I'm on my 17th month of Rev and Dex and assure you that it does get easier as your body adjusts to the drugs. I assume you are having regular BP checks as Revlimid can affect your blood pressure (low BP can cause you to pass out)If not, ask your nurse if she will check it for you.

I can't remember suffering from excessive fatigue…[Read more]

]]> f14b8b94ea0ada27edc265f01300afca SusanSmith replied to the topic Revlimid and fluey aches in the forum Side-effects http://www.myeloma.org.uk/forums/topic/revlimid-and-fluey-aches#post-104344 Sat, 03 Dec 2011 08:01:41 +0000 Hi Debs,
I have been taking Revlimid for 10 months and soon discovered that I couldn't tolerate the 25mg dose mainly because of the horrendous aches and muscle cramps. (It also made me extremely breathless and caused cardiac arrhythmia.) Once the dosage was lowered to 15mg my symptoms improved dramatically. It may be worth discussing taking a…[Read more]

]]> 9961fa89acd78b9101d03f99b538bfe5 SusanSmith 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-103979 Sun, 29 May 2011 08:34:20 +0100 Hi Angelina! What a rotten time your are both having. From my own experiences I would say the drugs are to blame for the nightmares. I had horrible nightmares when I was first diagnosed and taking a cocktail of drugs. They were so bad that I was afraid to go to sleep, in fact. They stopped as soon as I managed to get off all the painkillers…[Read more]

]]> 82474436d698de9aab41b3d38a3f1956 SusanSmith replied to the topic Velcade- subcut in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-subcut#post-97368 Sun, 22 May 2011 08:50:41 +0100 I had six courses of Velcade, Dai, and they lasted me 14 months before I had to start the latest round of treatment. I was very reluctant to go on Revlimid and asked to have Velcade again on the principle of "better-the-devil-you-know". However, after a horrible first month this has been so much easier, ie. no twice weekly trips to the hospital…[Read more]

]]> 1f501be696d17c9ad23117e8edb4b135 SusanSmith replied to the topic Velcade- subcut in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-subcut#post-97366 Sat, 21 May 2011 08:31:35 +0100 Dai, the very first report I read about Velcade being administered subcu was headed "Not to be released to the British Press". (I'm not sure if it was on the link I sent you some while back.) That says it all, doesn't it?
However, it's really worrying when specialists haven't even heard about the latest research. Surely if we can find out what's…[Read more]

]]> 4b3c8db9775d1cd09833980acd0af959 SusanSmith replied to the topic Velcade in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade1298948366/page/2/#post-103800 Sun, 17 Apr 2011 08:06:24 +0100 Hi Dai,
I mentioned the use of velcade subcutaneously a couple of months ago. There was a report of a paper given at the ASH conference stating that it was almost as effective used subcu as it is when given intravenously, and that the side effects were greatly reduced. I do have a link to the article but each time I try to add it to a post on…[Read more]

]]> 3ea00b38bd5752c06187dcb2d48d17c4 SusanSmith replied to the topic The Joys of Revlimid!! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/the-joys-of-revlimid/page/2/#post-103847 Sun, 03 Apr 2011 07:47:19 +0100 Hi Bridget,
Just wanted to know if you are still feeling better than you were. I am about a month behind you in terms of treatment (on second week of second mth of Revlimid +Dex)so it is interesting to compare how it has been affecting us.

I feel tons better since the dosage was dropped to 15mg and even think I have cracked – well, partially!…[Read more]

]]> adb46ffee8957fb3fc746682478cc924 SusanSmith replied to the topic Myeloma XI Trial in the forum Treatment http://www.myeloma.org.uk/forums/topic/myeloma-xi-trial/page/2/#post-96603 Sat, 26 Mar 2011 13:05:45 +0000 Debs, I had 6 courses of Velcade. I couldn't have the very final dose as the soles of my feet went numb so they decided not to give it to me. My feet did recover, well, back to what they were before, anyway, so it wasn't a problem. And I felt great after all the gunk had got out of my system!

With you having such young children then obviously…[Read more]

]]> b94158c33c3994935dd03f6c2731c933 SusanSmith replied to the topic The Joys of Revlimid!! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/the-joys-of-revlimid/page/2/#post-103846 Fri, 25 Mar 2011 08:19:35 +0000 Hi Bridget. It's good to hear that you are feeling better too. I had my first "normal" sort of a day yesterday since I started the Revlimid – dog-walking, working, then gardening – and it was so great to be able to get on with life. Although I am still a bit achy the pain has dropped back to its more usual level and is bearable. Onwards and…[Read more]

]]> 92eb302fb239795aae3dadf16b4f2328 SusanSmith replied to the topic Myeloma XI Trial in the forum Treatment http://www.myeloma.org.uk/forums/topic/myeloma-xi-trial/page/2/#post-96601 Thu, 24 Mar 2011 08:03:26 +0000 Hi Debs,
I just wanted to say that I found Velcade very effective. It batted down my pps from 46 to 3 – way lower than CDT ever got them. I also tolerated it well and was able to live a "normal" life if you factor in the twice weekly visits to the hospital.

Of course there were a few glitches but nothing major and they were sorted out without…[Read more]

]]> 88924e942e1a5f9d8957c105172395e8 SusanSmith replied to the topic The Joys of Revlimid!! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/the-joys-of-revlimid/page/2/#post-103844 Thu, 24 Mar 2011 07:48:15 +0000 Hi Min,
It sounds as though Peter has been going through the mill recently and I hope he soon picks up. The worst of my aches are starting to ease off, and I don't feel quite as stiff today, thank heavens. Mind you I have only had two tablets from the new reduced dose of Revlimid so things could change!

I find the worst thing about the Dex is…[Read more]

]]> c2e8bc6bd6b1354614bacdccd1123fbc SusanSmith replied to the topic The Joys of Revlimid!! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/the-joys-of-revlimid/page/2/#post-103842 Mon, 21 Mar 2011 08:20:12 +0000 Hi! I was just about to post and ask how many folk on Revlimid had suffered from horrendous muscle and joint pain when I saw your post. I'm glad it isn't just me :>

I've been on my week off and hoping that things would improve, which in all honesty they have done, but I am still so stiff and sore that I wince every time I need to move.…[Read more]

]]> 30ed32efc2e4a75ce22c646201391441 SusanSmith replied to the topic Revlimid & Velcade in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlimid-velcade/page/2/#post-97137 Tue, 22 Feb 2011 08:51:49 +0000 Hi Wolf,
Yes, I was told to take the Revlimid at night and took it last night at 10pm fearing the worst. It was fine. Didn't need the sick bucket on standby or any of the other measures I had taken, just in case. In fact the only problem I had was that the wretched dex makes me hum and I couldn't sleep. I was still clock-watching at 4.a.m so only…[Read more]

]]> 891bb96578514a2c58ba37d4f2f4ae98 SusanSmith replied to the topic Revlimid & Velcade in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlimid-velcade#post-97131 Sun, 20 Feb 2011 15:10:15 +0000 It's so interesting to read everyone's comments on their experiences. I have to confess that I am dreading tomorrow night when I shall have to take the first dose of Revlimid. My biggest concern is the fact that I couldn't tolerate thalidomide during my induction therapy. I certainly don't want to lose my voice again or end up with numb lips and…[Read more]

]]> e816ed558cc58e583b355615ba9623ea SusanSmith replied to the topic Revlimid & Velcade in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlimid-velcade#post-97123 Sat, 19 Feb 2011 08:17:37 +0000 Hi Wolf,
I am due to start Revlimid on Monday so it was interesting to read about your experiences. At least I shall have an excuse for acting slightly batty from the sound of it!

I'm having 25mg of Revlamid, plus 20mg of dex (it was supposed to be 40mg of dex but I argued that it was too much based on previous experiences, so the haematology…[Read more]

]]> fc724eee6f92f62466db350a3df9f23d SusanSmith replied to the topic Velcade for a second time, anyone? in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-for-a-second-time-anyone/page/2/#post-97039 Sat, 19 Feb 2011 08:05:36 +0000 Min, thanks for your encouraging words. I have my fingers firmly crossed that 1/ it works and 2/that it won't cause too many side effects. As you say, the good thing is that I won't have to visit the hosp. twice a week, although I do find it surprising that they let you trot off and take it without constantly checking your bloods, as they do with…[Read more]

]]> df6a82d5a3ecd7c471e3aee327225139 SusanSmith replied to the topic Velcade for a second time, anyone? in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-for-a-second-time-anyone#post-97037 Fri, 18 Feb 2011 08:14:46 +0000 Just to let you know that I saw a doctor (no point saying [i][b]my[/b][/i] doctor as I had never seen him before) on Wednesday and the long and short of it is that they will not give me Velcade for a second time. Oh, I argued my case but the decision had been made that I should have Revlimid and that's what I will have, that plus dex. I refused to…[Read more]

]]> 28a349e32237d9183b598f75a972f465 SusanSmith replied to the topic Velcade Experience? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-experience#post-103724 Sat, 12 Feb 2011 08:52:50 +0000 Fortunately, I've not had any problems re my veins. The nurses always manage to find a decent one without having to resort to the warming up method (in my area this is a bucket of hot water – nothing as fancy as an electric warmer up here!)I have seen other patients suffering as the staff try to get a line in so sympathise with you all for having…[Read more]

]]> 3998b730a0b599056c1ed2074bac4ae8 SusanSmith replied to the topic Velcade Experience? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-experience#post-103716 Fri, 11 Feb 2011 08:44:17 +0000 Hi Keith,
I was able to tolerate Velcade really well, far better than the CDT I had for my initial treatment. There were a few hiccups along the way, and I couldn't have the very final infusion of the 6 cycles as the soles of my feet went numb (they recovered), but there was nothing I couldn't cope with. It worked well, too, which is the main…[Read more]

]]> 7e8ec682628d00a5ae57234ac8225453 SusanSmith replied to the topic Velcade for a second time, anyone? in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-for-a-second-time-anyone#post-97035 Tue, 08 Feb 2011 08:15:09 +0000 Dear Mavis,
I had CDT the first time round (cyclophosphamide, dexamethasone and thalidomide)I reacted badly to the thalidomide – throat, mouth and lips went numb and I was covered in a rash – so that was stopped. The rest made me feel dreadful, extremely weak so that it was a struggle to look after myself. I'm a widow and live on my own so being…[Read more]

]]> 876d423e12eb8095fdf891a88f33606b SusanSmith replied to the topic Velcade for a second time, anyone? in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-for-a-second-time-anyone#post-97032 Wed, 02 Feb 2011 08:05:28 +0000 Thanks everyone. It sounds as though obtaining Velcade for a second time isn't merely a pipe dream. I had feared that funding wouldn't be available for more than one round of it.

I shall definitely hold out for it, if and when it becomes necessary.

As for GPs being responsible for the drugs budget then it does send a shudder down my spine,…[Read more]

]]> 15e39a18ad5470b29aa006a93b7432f3 SusanSmith replied to the topic Velcade for a second time, anyone? in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-for-a-second-time-anyone#post-97027 Tue, 01 Feb 2011 08:41:27 +0000 Thank you for your replies. It looks hopeful if at least a couple of people have been "allowed" to have Velcade more than once. I am working on the theory of better-the-devil-you-know which is why I am pushing for it.

I was diagnosed in Sept 2008 and the first lot of chemo was a nightmare – I have never felt so ill in my life. I was terrified…[Read more]

]]> 209b154e18828c28a1e6a37b1048b760 SusanSmith started the topic Velcade for a second time, anyone?. in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-for-a-second-time-anyone Mon, 31 Jan 2011 08:44:31 +0000 Hi! I am new to the discussion board so please bear with me if this question has been asked before. I had a course of Velcade in 2009 and it was fine. I tolerated it really well and it definitely did its job. My paraproteins are starting to rise again so my doctor is talking about more treatment and I would like to have Velcade again as it was so…[Read more]

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