Hi Ron,
Sorry to hear that your wife has been diagnosed with MM….it is a hard diagnosis for everyone who goes through it. Breathlessness can be a sign of low hb levels….which in turn can be a sign of the myeloma progressing. BUT, don't panic because quite often, the two aren't linked. I got breathless just after I'd had a dip in hb…[Read more]

Hi Gavin,

Sorry you're going to have to start treatment, but hopefully now it will help keep the myeloma at bay. Where are you being treated by the way? I started on the Myeloma XI trial 7 weeks ago and have been lucky enough to get revlimid…will hopefully find out next week how it is affecting my paraprotein.

Let me know if you have any…[Read more]

Hi Jonny,

I had something similar. My consultant in Bucks just made me feel like I was asking silly questions (and believe me, no question is silly with this), like I was being overly paranoid and like I should just go home and accept it all quietly. At the same time, he hadn't even heard about things like curcumin.

We got a second opinion…[Read more]

Just to add my bit, I've been on the Myeloma XI trial for 6 weeks now. Like people have said, I think different drugs affect different people in totally different ways. I haven't had any major side effects from the revlimid, but have been tired and get quite breathless. I also had the rash for a few days, but found that it calmed down with piriton…[Read more]

Hello David

We went to Ibiza last sept and insured throught a company called MIA throught the agent J D Travel its a company that specialises in insurance for very ill people even if they dont feel very ill just the related illness that people have.We went throught the terms and conditions and they seemed very fair you must hold an EHIC card…[Read more]

Dear Roz,

I am so sorry to hear about Michael. All my best wishes, thoughts and prayers are with you, your daughter and granddaughter at this such difficult time.

Debs x

Hello Bridget

So glad you are feeling better never pleasant in hospital your heart must have sunk when they said the velcade didnt work but you need to get rid rid of that tumer first and be rid of pain then on to the next step Revlimid seems successful for most people but I am afraid it will probably be with DEX again but if it works which it…[Read more]

Ros
so sorry to hear micheal has passed away my thoughts are with you

Jo

I would definitely write to them and explain to them how disappointed you have been with their attitude etc and let them know that you plan to take it further if they don't do anything about it. Sometimes (and I would hate to say every time) that does the job. Not that you should have to!

Min, they weren't people to be bailed out (partly…[Read more]

Hi Stuart,
Just a thought but could there be a topic for people who have sort of 'survivor' stories? There was someone on the Under 50 thread on the old site for example, who talked about how he'd had MM for 19 years I think it was…..and that's the sort of thing it's great for us all to see now and again…..esp for people who have just been…[Read more]

Hi MIchelle,

Great news about the protein levels! Really pleased to hear that. Revlimid sounds like such a successful drug….my levels 'look' like they're dropping on it too!

Does she struggle sleeping? I know I do, and don't know if it's the revlimid or the other drugs. But I wake every hour most weeks since I started on the revlimid.…[Read more]

Oh Roz,
I am so sorry. Like Michelle, it made me very sad as I have followed your journey on this site and feel like you guys have been through so much…it doesn't seem fair.

I hope that they are able to give you some reassurances on Monday and that it doesn't go the way you are imagining.

With lots of love
Debs x

Hi Kay,
Sorry to hear that you've joined all of us on here, but happy that you found us as it's a great site and you'll get loads of support.

I am 36 and was diagnosed, like you, by a random blood test, in July 09. Also like you, my hb kept dropping low while my paraprotein kept rising. Over the summer, the topic of treatment started to…[Read more]

Hello Gill
so sorry this d.a.m.n thing has reared its ugly head again I have been reading the reports from america and it looks like so many new treatments are being tested so even after a second SCT there will be much hope of new things being used glad about the champagne we must all stay positive or we might go under I have not been able to…[Read more]

Oh Jean,

I'm so sorry that you have had such a disasterous holiday….you must be coming back more tired and worried than when you left. But people are right, you can't not do these things just in case. Hopefully as time goes on, you can put it down to a bl_*dy bad experience and when you have a lovely time next time, you'll forget about…[Read more]

Hello Gaye
I am glad your biopsy went well I have only had three and dread the thought of the next one I shall ask for a sedative, my bone the doctor said was difficult to aspirate so they have to dig deeper so its good to hear doctor cared about the pain level. All our snow in Hatfield Herts went at the weekend but it has been so cold with…[Read more]

Hi there.
Just wanted to say that I hope the mouth feels better soon and that your happiness levels go back up for you!

It's been great reading your blog postings…what a good way to do it for everyone.

Keep your chin up and you'll hopefully be out of there in the next week 🙂
Love
Debs x

Hi Scott,

Interesting to hear about your figures, though obviously I'm sorry to hear they've progressed a bit. But if it helps, I had a couple of blips like that and then things went back to normal again, before I started to show a steady deterioration in figures. So it's definitely worth watching for a month or so before you make any bg…[Read more]

Hi Lindsey,
I feel very much the same as you about the trial….don't think it can be a bad thing at all, and hopefully I'll avoid the velcade option as I'd rather go straight to transplant and just get on with it all.

Like your mum, I'm having limited side effects and am just really tired (but I always am with 2 little kids!). It was great to…[Read more]

Well, I thought I'd do a quick update in case anyone else is going on the Myeloma XI trial.
I'm now on day 5, so have had 4 days on dex and 1 day off, and still seem to be doing pretty well! I know it is early days….as Nick keeps telling me, we've got over 100 to go, but you have to take what you're given don't you!
I think I can sum up so…[Read more]