Hi Gavin,
Things have gone pretty well with the trial so far, and I have to say, in comparison to what I had expected (The devil dex days you hear about, and the sickness etc) it has been much better. It sounds like CRD is slightly easier to tolerate than CTD although I don't know if that has been proven. I haven't had the response to dex that most people talk about (I wonder if it is due to a different reaction with Revlimid to what you get with Thalidomide) and the main issues have been tiredness at times (I just have to go bed at 6pm for a couple of hours!!) and breathlessness.
As you say, I'm hoping to see my figures drop well enough that I can go straight to SCT in april/may.
Good luck on Tuesday and keep in touch with how it all goes (email above if you'd prefer)
Debs x
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 levels….strange and no-one knows why but it happened.
I'm breathless again now, but that is probably linked to the chemo I'm on (CRD)…have to keep an eye on for DVT but that shouldn't be an issue for your wife if she isn't on any treatment yet. Definitely mention it to the haemotologist, but I wouldn't panic too much about it and I'm sure they'll pick up on it on Tuesday.
I hope that everything goes well on Tuesday and that you get some positive news.
Debs x
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 questions on it and if I can help I will do!!
Debs x
gascoyne2@virginmedia.com
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 from Prof Morgan and then got my GP to refer me to him as we felt like the Marsden handled me much much better, answered questions and were generally very helpful. They seemed to understand what I was going through and want to help me.
So I would suggest that you think about either talking to him about how he is making your husband feel, changing your haematologist in your current hospital, or considering if you have another hospital that you would happily travel to. We have to travel 90 mins now to get to the Marsden, but I feel it is well worth it for the care I'm getting. It'll be hard when it comes to my SCT in April as it means I won't see much of my children, but hopefully we'll get a better long term gain.
Feel free to message me if you'd rather talk off forum
Debs x
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 and I haven't had it since.
I am new to treatment, but from what I've read, the effects of revlimid are often (but I'm sure, not always) less than thalidomide, but if you are one of the unlucky ones who has the more severe side effects, it will of course be a horrid drug. Just as will any drug that causes nasty side effects. But then again, the effects of untreated myeloma are pretty awful, so I suppose it is up to the individual to decide which route to take, in conjunction with their consultant.
In terms of what the side effects are, I know they're watching my breathlessness as revlimid can cause DVT…but then again, I think thalidomide can too?
Don't know about trials other than the one I'm on and that is for first time patients but does allow for revlimid as a maintenance treatment post transplant if you get picked by the computer.
Good luck deciding what to do.
Debs x
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
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 because they are cautious and charge more than other banks for the priviledge!) but that doesn't mean that they shouldn't be thoughtful with their policies etc.
Perhaps like with many companies, they need to have a wake up call to relook at policies? I hope you get to sort something out with them….it's the last thing you need when you are going through something like this. If you need me to find out who you should write to, in order to get the most direct response, I can do so!! Email me on gascoyne2@virginmedia.com (but please no hate mail!!!)
Take care
Debs
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 diagnosed, and need to know that there is some hope.
Thanks
Debs
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. I've been off it 2 nights now and am hoping for some sleep so I'm not so tired, but sadly my little girl has been ill and up throughout both of those nights so far!!!
Anyway, hope things continue to improve for her.
Debs xx
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 arise, and eventually I started on the Myeloma XI trial, 3 weeks ago, with the idea of 4 cycles of CRD (revlimid rather than thalidomide) and then possibly velcade (if I don't respond well) and then a SCT.
Try not to be too scared. I don't know if the revlimid has made the difference, but I have had really limited side effects on it….not even the Dex that everyone talks about! Where are you being treated? It might be worth asking about the trial and seeing if you can get on it? But even with CTD, I understand that for lots of people, you can carry on as normal. I am still working, still doing the everything for my 4 and 6 year old, and still running round manically for Christmas!!! I do get more tired sometimes, and have a horrid taste, but other than that….
Definitely join us on the Under 50 site too….so long as you don't mind slghtly ripe language! But most of us visit both sites so you'll find us anyway.
And if you want to talk things through with me, drop me a message….really happy to talk off the forum if you would prefer that.
Take care
Debs
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 it.
I hope so much that the last bit of your journey goes quickly and you can get Frank home to bed/ the GP and get him well again.
Take care and catch up soon
Debs x
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 decisions.
I'm on CRD (revlimid instead of thalidomide) as part of the Myeloma XI trial and it sounds like it's a regime that shows fewer side effects. Apart from a feverish blip the other day, I've managed pretty well for the first 7 days anyway (yes I know it's still early!). It sounds like you're in the same sort of position as I was in which case, you'd be the perfect 'candidate' for the trial, so it's definitely worth getting some info from your consultant about it all. Whereabouts are you being treated? I'm not sure all hospitals are involved, but it might even be worth thinking about changing to get a better option?
In case you want to read more about it, here's my blog (you can see what I really think!!) which has a link to further info about the trial….might be helpful but don't worry if you don't want to read it….I think it's very boring but it's a useful diary for me!! http://debsjourneywithmyeloma.blogspot.com/
Take care and please give me a shout if you want to talk things through, either via here, via my blog or I'm on fb too??!!
All the best and hope you can keep those proteins in their place!
xx
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 be offered the revlimid – like you I went to the London Infoday and it was good to hear how positive everyone was about it.
I'm being treated at the Royal Marsden….I live in High Wycombe…what about you and your mum?
Sorry for the short one but I need my bed now….catch up another time I hope!
Debs x
