[orangelocketsParticipant]

Hello all,

Hopefully this wonderful forum can give me some advice.

I'm on Revlimid/Dexamethasone and am having an awful time of it. I'm supposed to be taking this combination for the rest of my life, and at the moment I don't know if I can face all my days like this – my quality of life is extremely poor.

I'm only 15 days into my first cycle, and suffering from:

– shaking
– giddiness/dizziness (sometimes so bad I can't get out of bed for days)
– nausea
– feeling weak
– loss of appetite
– feeling 'not here', like sleepwalking through the days

(I had to stop Velcade last year because the side effects were too terrible.)

I am also on allopurinol, sodium clodronate, omeprazole, enoxoparin, and cotrimoxazole. So I know it's complicated to say which one is causing which side effect.

Has anyone had a similar experience? Will it get more bearable, or is this what I need to accept? When I speak to the unit about my side effects, I seem to get passed back and forth between people and nothing seems to get done – but maybe this is because nothing can be done…

Thanks for any advice,

Sue

[AliParticipant]

Hi Sue

I'm Ali, its my Mum with MM.

I'm sorry to hear you are having such awful side effects.

Just a thought, my mum was severely allergic to the cotrimoxazole. When she stopped taking that she was much better. It's quite common to be allergic I think. As soon as she stopped taking it she felt much better. (It's the Mon Thurs one isn't it?)

Sorry to be brief I am on the school run!;

Love Ali x

[PerkymiteParticipant]

Hi Sue, I have just started taking Velcade and Dex so am way behind you I am afraid. However, have you actually read the information that comes with the medicines. A lot of people just read the instructions on the Script or Box.

I was busy taking my medicines the other day, I had not been to the toilet for a couple of days so decided to add in Laxido. As a matter of passing interest I read the Manufactures information sheet. it said "Not to be taken one hour before or one hour after any other medicines". In the past hour I had taken my heart tablet, Anti Viral Tablet, anti sickness tablet and 20 mg of Dex ready for my Velcade injection. I was horror struck by what I had just nearly done.

If you do not already please read the [u]Manufacturers instructions [/u]and if in doubt go round to your local Chemist and ask the Pharmacist I always do now and they are always happy to help.

I do hope this is of some help if it is not why not telephone our resident MyelomaUK Nurse

Kindest regards – vasbyte

David

[jillsParticipant]

Hi Sue,

Jill here, carer for my Mum who has MM and is on the Revlimid regime. She is on her third cycle and doesn't seem too bad now with side effects although she is a bit less lively than usual. However, she is on quite a low dose of everything (she is 84), so maybe you need to talk to your unit about lowering the doses? Also she had more effects in the first cycle, by cycle two she seemed to be doing better. Mum doesn't have allopurinol (can cause allergic reactions) and has penicillin (not cotrimoxale) and half an aspirin for blood thinning – as she lives alone there was no way she could manage daily blood thinner injections and I refused to do them for her! But David is right – the combinations and timing can be important too.
Hope things improve for you soon.

Jillx

[JentayParticipant]

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 take the other catch-all drugs that my consultant wanted to dish out. So apart from a daily low-dose aspirin, that's it. With so many powerful drugs whizzing around your system there is bound to be a conflict so do be very carefull and choosy about what you take. And as has already been stated, read the information included in the packets. It can be a big help.

Try not to get too despondent. The treatment does work and I've enjoyed an excellent quality of life since I've been on it.

Jen

[richardlongParticipant]

Hi, I have had MM since Sept 09, After thalidomide, SCT and Velcade, I am now on 4th cycle of revlimid. This has been my toughest one yet. My bloods are very low and i have back and chest pain. I really feel i have no choice but to struggle on as funding has been supplied for this treatment. I feel knocked back a bit as i sailed through the other medications although i did not get much remission period in between. My revlimid is 25mg a day and has not yet reduced the paraprotein, but other patients have told me it has been the best result yet for them.

[Author]

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