Hi Deb,
Welcome to the site and I hope you find it as useful as I did….it got me through the first weeks and months after my diagnosis.
I would echo what Lorraine has said above. It is scary in those early days when even the terminology sounds scary! But it does all get easier. I smouldered for a year, then went onto the Myeloma XI trial where I had revlimid, velcade and then my transplant. I am now 18 months post transplant and doing very well on revlimid maintenance – most of the time I forget I even have myeloma!
I hope you can find some good times around your 50th 🙂
Love
Debs x
Hi there.
I thought I'd add my experience and say thanks to you all for your replies as they've helped me too!
I've been on zometa since November 2010 (with a break for transplant) and other than the 1st time hadn't experienced the cold/flu/ muscle aches.
However the last two times I've had it, I've been really achey and have had chronic muscle cramps where it has killed to walk and I look like a 100 year old lady walking down the stairs. I had thought that it was weird that it had started again, but reading the posts above am reminded that the hospital said they now infuse over 15 minutes rather than 20 minutes so I think I might ask them to slow it down! I hadn't thought about that!
Thanks everyone and Tom hope you're doing ok now.
Debs x
Dear Anne & Pete
Thanks for that….I'd sort of not clicked that I'd be seeing our faces on the front cover! A bit of a shock to say the least! Anyway, I hope it helps someone out there a little bit…
Hope you are well
Debs x
Hi Stewart,
I echo what Alex says above….I was 34 when I was diagnosed in 2009. Our children are now 8 and 6, 3 years down the line. But they are who help me to get through those darker moments when your whole world feels upside down. That said, I can only imagine how hard it is to go through those 'exhausted' early days whilst also dealing with the diagnosis.
I didn't have a paraprotein quite as high as yours but mine rose from 30 to 50 when I finally had my SCT. But my doctor wasn't so worried about the pp levels as he was about the symptoms and in the end it was those that dictated treatment. The pp seemed to just be an indicator. But I know people with really low pp's who have needed treatment. No rhyme or reason and I think that is something that you start to get used to with myeloma.
Eve's post made me laugh about the Under 50's site 🙂 It was set up in the early days before this forum was changed. I think that you will get fantastic support from both!
Feel free to get in touch if you want to…I was also on the Myeloma XI trial (still on maintenance therapy) and had revlimid, followed by velcade before my transplant.
Take care and all my best wishes for you, Vanessa and your daughter 🙂
Debs x
Hi Helen
Thank you for asking! The Ball was absolutely amazing…..the room was fantastic, the people seemed to really enjoy it and there was a lovely feeling around the place. We think that we raised over £22,000!!!
China was also amazing thank you….I wore a mask on the badly polluted days but generally we were quite lucky! It was a fantastic experience.
Love
Debs
Hi jean
PP levels definitely don't need to be zero…they were going to do mine when mine were at 28 still!! And they had only halved from 50! I am pleased that I got down to 8 when I had my transplant, but 0 definitely shouldn't be a requirement. They probably just want to check he has plateau'd before they make the decision…but I would imagine now they would be seriously thinking of starting the transplant process.
I don't really get the other readings, but I would ask to speak with the top person next time and ask for a date! Sometimes you just have to push them!
Good luck!
xx
Thanks John.
One of the issues is that when you're on trials like the Myeloma XI trial, they won't let you have it sub-cutaneously (or at least they wouldn't a year ago when I was on it!!)
Not sure about how much revlimid is known to cause PN so need to ask more at my appointment next month….didn't think it was a major side effect!
Thanks for the post 🙂
xx
Hi Megan.
I was on velcade too and found that cold feet were the start of neuropathy. So glad that Phil has had the dose reduced as I tried to stick it out and it got worse and worse, to the point I had to have medications to try to relieve the pain…and they didn't always work! Luckily 6 months post velcade/ SCT things started to improve and I was fine for a year.
I seem to be getting first signs again now though (am on revlimid maintenance) and don't know how much to tell my consultant now as I don't want to be taken off it, but yet I know that when it gets worse it isn't nice….arrggh!
Good luck!
Debs x
Hmmm… I hadn't even thought about it and have to say that I went swimming after about 6 months as my kids were desperate to go with us, and I was sick of making excuses of why I couldn't do things with them all the time. I spend my life around snotty nosed kids coming over to play and so can't really miss these things.
This summer we went to China and went to the Bird Cage in Beijing and I have to say, if there was ever somewhere I would have picked something up, it would have been there I reckon!! The kids possibly got the herpes simplex virus but I stayed clear 🙂 (!!!)
But perhaps if it had even crossed my mind I would have avoided all those things……..
xx
Hi Sarah Jane
I am quite close to you as I live in High Wycombe!
I was diagnosed in 2009 with SMM and then progressed to treatment about a year later (although I now get treated at the Marsden in Surrey). I also was put onto the Myeloma XI trial in November 2010 and got revlimid first time. It worked for me for 4 weeks and then I plateau'd and went onto velcade for 4 cycles. Then I had a SCT in July 2011.
I found on revlimid for me (and I know this isn't the case for everyone) I didn't suffer too badly….my taste went up the spout and I had times of being tired, but generally I was ok….even th Dex didn't affect me like it does others. Generally I just piled the pounds on. I found the velcade much harder and that would wipe me out for days at a time, but I did learn when and how it affected me. I kept working while I was on revlimid (and also have 2 kids now aged 6 & 8) but stopped on velcade before the side effects kicked in, as I wanted a bit of time at home before my transplant. I'm not sure I could have managed work unless they'd been very flexible with me.
I think the main thing is to learn to listen to your body…if you feel tired – REST! Don't think you're invincible! And I agree with what the others have said about getting a blue badge now. You sort of have to answer it saying how hard things are on your worst day. I could have managed just about without it before transplant, but in the aftermath of it, it was invaluable to have.
I am so pleased that you have a supportive husband though…it makes such a BIG difference though!! Mine is fantastic and he has got me through the last couple of years.
Good luck and happy to answer any other questions you have 🙂
Debs x
Dear Rachel,
I am so shocked and just want to wish you all my thoughts as you deal with the loss of Paul. I remember him first coming to this site…he was always so very positive and you must have been so proud of him.
I don't come on here often at the moment, but know that when I did, he was always there supporting people.
Thinking of you, Chloe and your family.
Debs xxx
Hi Sarah Jane
I've dropped you a reply on the other page so give me a shout if you want to catch up
take care
Debs
Hi Tessa,
I would be happy to say…..my email is gascoynedeb@gmail.com
MUK have been my lifeline…and like you I am doing much to help them raise money as it is the only way I can truly thank them.
xx
Dear Sarah and Henry,
I haven't been on here for ages due to doing the Ball, but am so pleased to have read this update and to see that things are going well. You must both be feeling chuffed to bits!!
Make sure he continues to take things easy…it really does take up to a year to get back to things full on, but then…and I really mean it, then, things start to feel like life is normal again.
Good luck to you both and I hope that you can park the myeloma in a nice little spot and enjoy life inbetween those 8 week appointments.
Take care
Debs xx
Hi Sarah Jane
Sorry to hear you have had to join us all, but I'm also glad you found us!
It sounds like you've had a similar story to mine…I was diagnosed at 35 with SMM with a pp of about 30 too. I slowly increased like you and eventually because of suspected bone pain in July 2010, I started treatment at the Royal Marsden.
Life will definitely feel like a roller coaster, but the lows and highs get slightly less with time…for me anyway. The further along I go, the more I feel I get to grips with what I am dealing with. That said, it doesn't change the fact this is a hard disease to deal with and you are totally allowed to find it really tough at times! That's why we're all here too…to help you through those bits and to answer some of your worries and concerns. I'm happy for you to PM me too if you want to. I have 2 young kiddies too, and in the early days, I really needed other people of a similar sort of age to talk to about work/ kids etc.
I totally remember how hard it is in the run up to each appointment at your stage…the waiting game is horrid but people above are right, if you can 'park it' do. If you can't, don't be hard on yourself. I used to get so stressed in the few days before my results.
I also agree that the Under 50 site is great, but stay on here too..they both offer great support and you get lots of people on here every day who can help massively with the day to day issues of myeloma.
good luck
Debs x
