[DebsParticipant]

Hi Norman,

Sorry to hear that you have levelled out on Revlimid. I thought you might be interested to know that the same seems to have happened with me. 4 cycles in, and after an initial drop from 50 to 32, a second drop to 27, I have now gone back up to 28 and it looks like I will also be going onto velcade (or coming off the Myeloma XI trial as there's no way I'm having a transplant yet!)

Maybe Revlimid as induction therapy isn't as good as it seems. Have you heard of anyone who has responded well to it?

Sorry can't help with regard to SCT info yet.

Take care
Debs x

[DebsParticipant]

hi Bridget
Just to give another idea Im starting to think it could be the coproximol….took it again twice test and the horrid taste came back this afternoon. Got appt today to pick up cycle 4 drugs so will ask the question!
Debs x

[DebsParticipant]

Oh Bridget,

So sorry you're feeling so rubbish. It can be awful can't it. I have my sister in laws 30th on saturday….evening wear only…and I'm going to look like a hamster faced heffalump!!!

I didn't realise it was a common side effect the feeling of bruising, but I get that every now and again (can't decide whether it's dex, rev or cyclophos!) and feel like if someone touches me I'll go black and blue.

And the taste thing is just horrid isn't it….I can't stop eating from it. I don't think I've put on weight from anything other than my lack of willpower at a point where I just want to lose the taste of CRD no matter what the consequence (until I see the consequence and then just want to lose the weight!!)

keep strong though, those days will pass.

Debs x

[DebsParticipant]

Happy Birthday Bridget. I am glad that you have had a lovely day and am glad it makes being shattered well worth it!

Thank you for all of your support and comments on the site…I often read and don't reply but as others have said, you are a true rock to so many people….and so positive which is what we all need…but you manage to do it even when you are down. Thank you and you deserve the best birthday ever.

Debs x

[DebsParticipant]

Mine has come back Keith….just as I have gone back on the dex…the good news is it's stopped me picking this time, so perhaps the beached whale effect will calm down!!!

We'll have to keep an eye on it and work out what it is exactly that is causing it 🙂

Debs x

[DebsParticipant]

Hiya Keith,
Now it could be the zometa I suppose…I have that too! I'm with you about not liking it. The first month, it put me off my food….hated the fact that everything tasted the same…even the glass of champagne I tried!! But since then it's done the opposite….on my quest for normality I eat and eat and eat and now I'm becoming the size of a whale!! So if you find a solution for it, I'd love to hear it!!
Let's hope someone on here has an answer for us before I end up beached!!!

Debs x

[DebsParticipant]

Hi Keith,

I'm not on velcade but I would describe the taste that I get on revlimid/dex/Cyclophos as being like sea water and quite salty. Even glasses of water taste of it??

Do you take the velcade with anything else? Someone else hadn't thought of it tasting salty when I mentioned it and then realised that was exactly what it was that they couldn't put their finger on!! I just wonder if it is the dex that does it, if you're taking the two together??

Debs

[DebsParticipant]

Hi Kay,

I remember really well what you are describing….both with the BMB and the anticipation. I think you'll be finding out today so good luck with it all and I hope that your consultant is wrong…they quite often are!!!

If you get on the trial and what to have a natter about it, drop me an email at gascoyne2@virginmedia.com. I'm happy to talk on email or over the phone if you'd like to.

As for the BMB and the pain….my guys said they'd give me happy pills next time 😀

Take care and good luck for today.
Debs x

[DebsParticipant]

Hi Jenny,

I just wanted to say good luck with the next period for you. It must be hard to selfless in this and help him in what he wants, when the last thing you guys will want is to lose him. But you sound like a close family and I hope you have the support around you that will help.

Good luck with the decision making, the conversations with him and remember if it does get hard to watch, we're all hear to listen and help.

Big hugs
Debs x

[DebsParticipant]

Hi Tina,

Really sorry to hear that Patrick is out of remission, especially after a rotten christmas. I hope that they manage to get him sorted over the next few weeks and months and that he isn't suffering too much with it all….and that you aren't either.

Thinking of you
x

[DebsParticipant]

Hi Roz,

That is an amazing amount and I am just so sorry that the money came from Michael passing away.

MyelomaUK will write to you to confirm they have had it, but if you are worried, drop them an email, or call them. Sometimes, it takes a few days for them to process things.

I am sure they will be so pleased to receive the money.

Take care
Debs x

[DebsParticipant]

Hiya Jean,

CONGRATULATIONS!!!:-D
What lovely lovely news for you and Frank!! Really happy for you and she is beautiful!

Hope you get to enjoy some cuddles very soon!
Debs x

[DebsParticipant]

Great news to hear that you're home. Hope it all goes swimmingly and that you are able to recouperate with no problems.

🙂

Take care
Debs

[DebsParticipant]

H Michelle,

I'm on zometa too…..was fine for the first 24 hours, had flu symptoms and aches like i've never known for the next 24 hours, and was then fine. And when I had my second infusion last month I didn't get any side effects at all.

I hope that your mum avoids the side effects, but from what I know (not v much!!) zometa has had a pretty good write up.

Debs x

[DebsParticipant]

Hi guys,

I got this too. I don't believe it's a bogus email, but it is one from the Myeloma forums site….i seem to have totally deleted the email off my system (as I don't use the site anyway now), but I know that Andy once wrote on this site trying to encourage people to take a look at his too.

I don't think anyone needs to worry about it….I think he's just someone who has been affected by myeloma, set up a website that he runs as best he can as a non-it professional, and is now having difficulties with horrid people hacking into it. Why hackers don't have better things to do with their time than cause issues on websites that are trying to help me, is beyond me.

Anyway, Jean, Dai and co, I don't think you need to worry about this one.

Debs x

[Author]

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