Hi Annie
Mum is doing quite well at the moment, she too was diagnosed just over a year after she retired, she is only 65 now. She is responding very well to Revlimid and her proteins are down to 2 that is the lowest it has ever been. The consultant said that when she was diagnosed it was the worst case of bone damage that he has ever seen on…[Read more]

Hi Sandie

Good to hear that your mum is feeling fit and well, and just to say that I hope your scans are clear, you must be feeling really freaked out by the whole process, and yep work certainly does have its bonus points sometimes.

Good luck and keep us posted when you get your results.

with love michelle x

Hi David

sounds like your doing really great, especially seeing as no consultant appointments for 8 wks…WOW….fantastic. As Bridget says I hope that your pics show nothing more than creaky bones! Good luck.

with love michelle x

Hi Ann
I am sorry that you are having problems, however, I think you really need to wait for your appointment with the orthopeadic surgeon, to find out what is really going on, it is really common to have problems around the hip and pelvic area, My Mums main problem is in her back. The main areas for bone deterioration is back, ribs, pelvis and…[Read more]

Hi Marion,

I'm currently on the Myeloma XI trial and got the revlimid (lenalidomide)branch of it. It seems like the side effects are different for everyone but I have to say that I have had minimal side effects in the grand scheme of things. Tiredness, tenderness and some breathlessness and awful tastes seem to have been the worst for me (oh…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

Hi Tom

Well if I can bring a smile to someones face then I'm doing my job right on here lol!!

My Mum calls them her nashers!!

I cant stand the bloomin things, be hopes I never have to have them, cos I have a real phobia with them ha ha.

but will defo mention the toothpaste and see whether they think it is worth while trying it…[Read more]

Hi All

Mum didnt seem to have any side effects at all, she is still much the same, the tiredness seems to be getting worse not better tho!!

No point in telling Mum about the toothpaste she only has 3 of her own teeth and the rest are falsies lol, but she would much prefer it if the last 3 just fell out.

much love michelle "Onwards and…[Read more]

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…[Read more]

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

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…[Read more]

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

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