Hi mike. I,m not surprised that you took some time out…there's a lot to take on board at the start. I'm glad to hear it's all started off ok though! I'm now on velcade but have a feeling it may not be respondig much now. Got 3 cycles from revlimid and looks like it could the same with the velcade. Find out more in a couple of weeks. How did u respond to your first??
Catch up soon
Debs x
Dear, dear Tina,
I have only just come online and read this and wanted to say just how very sorry I am for your loss. When I met you it was so apparent what a strength and support you were to him throughout your journey with this disease. My thoughts are with you and your family so much and I hope and pray you have many many happy memories of him that will help you remember him as he was before this terrible illness. If you would like people at the funeral, please let me know the details and I will do all I can…..but I know we only met once.
With lots of love, hugs and Prayers at this very sad time
Debs x
Hi eve
Just wanted to say firstly to keep strong with slim and remember all the experts you have working with him. He sounds like a fighter too so hopefully you'll look back on this in a month and wonder what the worry was about …I hope so as you're v inspirational people!
As to the complaint , I'm with Tom…..would take awful lot for me to be offended on this site. Swearing certainly wouldn't do it! I've even read posts in the past ( not yours I hasten to add) where I've found them thoughtless to what others are going through but that's part of finding your feet on a forum and I can't imagine reporting it. So don't let that upset you…we're all with you on your journey!
Debs x
Ah Sharon,
You'll be fine hon. HOw come you have to go in for a few days though??? Remember to call me if you need anything at all….even a rant!!!
Take care. Lots of love
Debs x
Hi Sheff,
Like the others on here, I am so sorry to hear about the loss of your father. I think it hits us all hard everytime that we hear of someone passing away, but it is even harder when you know that the family have suffered so much with the way it has happened. All my best wishes are with you and your family over the coming weeks and months.
I would have to say that I echo what Jet has said to some extent. I started on this trial with very limited side effects and to date, whilst both the revlimid and the velcade I have been on haven't helped for long, they have done quite a bit towards what we needed. I have been lucky with side effects (although the revlimid has been harder) and feel very lucky for that.
I think Jet is right that we all have to take chances with this awful cancer. And your dad probably did too. And that must be really hard at the moment to know that he was taken so much earlier than you had been led to expect and certainly earlier than you would ever have wished for. The thing I think we learn about Myeloma, is how individual it is. How one person responds is so different to another. And how the myeloma itself mutates seems to be very different too.
But perhaps none of this is very helpful to you at the moment in which case I am sorry if I have said too much.
With lots of thoughts and prayers for you all
Debs x
Good luck from me too Dai…hope you manage to persuade him….I'm wondering about asking Prof Morgans team when I go in next week as I already have PN from velcade…mildly I think (numb feet, and now slightly painful calves and arm muscles!), but I'm only on cycle 2 and you don't normally get anything till cycle 3 plus.
But I think I know the answer already……(esp since I'm on a trial!)
Debs x
Aahh, Gaye,
So sorry to hear that the pain is still bad for you. Must be so hard….bad enough dealing with the damned disease anyway, without that on top of it all. But I am really chuffed to hear that all is going well with the pomalidomide…that is good news!
And just to join the others…..
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(The stars are what my 6 year old daughter likes to put after kisses and cuddles! Think you probably deserve some of those too!)
Hi Jonny,
How are things going with you? Hope treatment is going ok and you're not suffering too much.
Just wanted to catch up and check in on you!!!
Debs x
Hi Mike,
Just thought I'd see how you were doing as you must be into your second week of revlimid now? How has it been? Any major side effects? Meant to mention that your taste will probably go up the spout…but you probably know that by now! I remember my consultant saying I could have a glass of wine if I wanted but that I wouldn't…didn't believe a word that she said….until it happened….have never drunk so little in my life apart from when pregnant!!
Anyway, hope that you're not suffering too much and keep in touch on here if you need any help or support. It's what we're all here for.
All the best
Debs xx
Hi Andy
Sorry to hear you got the diagnosis so young. I was 34 when diagnosed in 2009 and felt like it was really unfair!!
Hope you're being looked after well…think you'll like the under 50 site though if you email Scotty!!
Debs x
Hi Keith,
How are you feeling about the transplant? It's good to hear that the velcade has worked for you…it seems to be doing the same for me, so I may not be far behind you with a transplant date!
Bridget is a gem isn't she….most definitely one to count on and we shouldn't forget that! And I'm really sorry if you felt that none of the rest of us supported you….poor show on our part I know.
Take care and hope your meeting on the 19th goes well
Debs x
Oh Bridget and kay,
So similar!! I've gone up 1-2 dress sizes no matter what exercise I manage to fit in on the odd good days I have. And whilst I eat, I don't feel I overeat massively….occassionally yes (it is that taste thing isn't it Kay….awful!) but not loads. I am hoping some of it is water retention.
And like you Kay, everyone keeps telling me how (With the lovely rosy dex cheeks!) I look so well….so fat they mean! I am now the size I was when I'd just had my son, and am VERY depressed about it all. But am trying to get on with it and just watch a bit what I eat….that said, my parents are round for tea tomorrow and we're having scotch pancakes and cake!!
Oh well…..Jet, sorry you are sad to be the opposite….it is all about self-image isn't it whichever way you go. Though I think I would still rather have lost my curves and my boobs than have developed twice as much…especially with the summer coming up :-(. But I do sort of know where you are coming from too.
Debs
P.s Bridget, not on revlimid anymore as I plateaud…..now on velcade (cycle 2), with cycle one bringing me down from 27 to 15….keeping fingers crossed I don't do the same as with revlimid where I just stop going down now!! Find velcade exhausting but if it works, I don't care!!!
Just a quick update for anyone who is on the Myeloma XI trial/ interested in Velcade treatment.
I've just finished the first two treatments of cycle 2, and got my cycle 1 paraprotein results back….have gone down from 27 to 15, so I am over the moon, especially as my consultant had warned me that I may well not see a decrease in the first cycle.
I've found the treatment worse than Revlimid as it really flakes me out and I am pretty useless apart from managing the kids! How people keep working on it is beyond me!! You are better people than me for definite..I am so glad that mine finished last month.
I also had slight peripheral neuropathy from weeks 2-3 although it seems to have calmed down a little after my week off. The consultant is surprised as it is quite early but doesn't seem to worried yet, as the PN is pretty minor and doesn't give me any pain, just a bit of discomfort.
Had some lower back pain that has started today too, but saw a doctor, and again he didn't seem too worried, so I'll see how that goes over the weekend!!! It is pretty horrid but I don't think it is MM related..who knows though.
Anyway, that's all for now…off to bed now!
Debs x
Thanks for your responses guys!
I will let her know what you have said and perhaps suggests she just checks out normal sinus remedies that DON'T have ibuprofen in them
Cheers
Debsx
I am so glad that it is not just me!!!
I have got so fed up with the hairy top lip that I have been having electrolysis on it for the last few weeks….No offence to men, but I am fed up of having more hair than my beardless wonder of a husband!!!
Sadly, can't deal with the weight gain in quite the same way, but nevermind!
xx
