Hi Sarah Jane.
I'm on RCD though not on the trial. I'm on cycle 10 🙂 and my PP's are only creeping down at 21 last reading. I've been on treatment for 14 months now! and that's the lowest count I've achieved.
Whoops I've gone off course of what I wanted to say lol. I've found it's the cyclophosphamide that causes the nausea with me. I've been given ondansetron tablets to combat it. I take one two hours before the cyclophosphamide and then twice a day for 3 days. It works for me. I know more pill popping but that's par for the course.
Take care & all the best
Andy xx
Hi Keith.
You sure are going through it at the moment! It shows how careful we have to be and to monitor our temperatures regularly. Things can go down hill really fast – NEW MEMBERS PLEASE NOTE – and it's important to ring in with ANY worries.
I'm glad your back at home now and hope you can stay home over the Christmas and New Year period. I got kicked out my hospital bed last Christmas Eve so just managed to have Christmas at home.
Hope 2013 is a better year for you Keith.
All the best
Take care
Andy & Steph
Hi Helen
Good news that you've reached the second anniversary and everything is going well. If only you could get rid of the last of your cough.
I had to read your second post twice, I thought you were calling the Prof. A hobbit lol 😎 I blame it on the steroids I'm on!
We hope you have a good Christmas and a happy new year Helen
Lots of love Andy & Steph xx
Hi all.
I had my zometa today errrr yesterday which was administered with the usual effiency. Then we had our meeting with my consultant. My paraproteins have drop slightly again from 23 to 21 – not brilliant but moving in the right direction. So I'm putting it down as good news – we haven't had much to cheer about since diagnosis Oct 2011. She asked me the usual questions about side effects and aches and pains. I had nothing much to report there but she's going to book me in for a MRI scan anyway. We asked about what the options were when the Revlamid stops working and she ran through some drugs old and new and said optimistically that Revlamid wasn't the end of the line. I asked about previously "failed" therapies that had brought down my PP's only slightly but had held it in check ie they didn't increase wildly and she agreed they could be looked at again.
Dai – when we mentioned that SCT was out of the question now she said there was still a very slim chance of an auto Sct.
For that to happen I would have to get my PP's right down and then come off the drugs long enough so that my bone marrow would recover enough to produce enough stem cells. Like she said a slim chance but a chance and a better chance than an Allo Sct. at this moment.
Helen – we had to make do with a coffee in the day clinic down here today mind you it's free here 🙂 missed our post consult chat. Hope everything goes well at the clinic. Yeah getting together in the new year would be good we'll just have to arrange a time and place that suits.
Tom – as you say if the doc's smiling it keeps you smiling. Well we left the hospital smiling 🙂 onwards and upwards.
The fight goes on.
All the best
Andy
Ps. Yes this is a Dex wide awake night 😛
Hi everyone.
Many thanks for your posts and kind words. Yesterday was a blow but my journey from the start has been one disappointment followed by another so we're getting used to it.
Dai the reason I was given why I can't have an auto sct is my bone marrow has been battered by so many drugs that I wouldn't produce enough stem cells. My last BMB showed I didn't have much bone marrow at all.
I'm to stay on RCD until it stops working or something else crops up. The Prof. Doesn't want to see me again till something changes. He did mention other drugs to try. Bendamustine is next in line, maybe on a trial with pomalidamide and possibly carfilzomib as future treatments but there's hurdles to jump for the last two.
Scott I saw Prof. Jackson at Newcastle.
Thanks for all your support – the fight continues.
Take care.
Andy & Steph xx
Hi Vicki & Colin.
What great news having Colin home. Vicki tie him to the chair we don't want him to wander off back to the hospital any time soon. I know you'll be keeping a close eye on Colin Vicki make sure he doesn't try to run before he can walk. You must have mixed emotions having home elation and worry but I'm sure the worry will fade with each passing hour. Don't forget about yourself Vicki you need to take care of yourself too.
All the best.
Andy & Steph xx
Hi Maria.
Welcome to the forum. This is the place to let off steam, ask questions and hopefully get some answers.
Although none of us want to be members we are a friendly bunch and at times a funny bunch – especially that Tom. None of us are experts but if you ask a question you'll always find someone has an answer through experience. We all travel different journeys with myeloma and all react differently to the treatments that come our way. Some sail through to SCT others take a more leisurely route. Don't be afraid to ask anything and don't be afraid to offer an opinion. We're here to help and you will before you know helping too. I hope your journey to remission is short.
I look forward to reading your posts.
All the best.
Andy x
Hi Tina.
It's good news that your feeling better. Long may it continue and improve.
Best wishes
Andy xx
Hi Keith
Just checking in to see how your coping with the new regime. How are you tolerating it?
I know you've just started but I hope it's going we'll with little or no side effects.
Good luck.
Andy
Hi Vicki & Colin
Hang in there Vicki I'm sure they will get to the bottom of Colin's pains. I haven't googled his new diagnosis so I won't pass comment on it. I've been reading up a lot about sct's lately ( allo sct's for personal reasons ) and they are frought with problems it is a major major reboot of the immune system. Unfortunately some have a lot more problems than others who happily sail through the process. I'm sure Colin is not unique though that is no comfort to you both at this moment. I do hope you get some respite soon and you can start to see the light at the end of the tunnel.
In the mean time Vicki you concentrate on Colin and don't worry about the rest of us we will be here for you as support for you whilst you need it. Colin is your number 1 priority.
Take care and don't spread yourself too thin Vicki.
All the best
Andy xxx
Thanks Eve
The tablets don't agree with me neither 🙁 will have to get some bananas when the shops open. Coffee and beer gave potassium in them too! Can feel a drink or 2 coming on tonight. 🙂
Have a great time in New Zealand hope everything goes well.
All the best
Andy xx
Hi Vicki & Colin.
I'm feeling good at the moment which is at odds to what I should be feeling given my situation but hey ho I'm not going to complain – well not too loudly. Get my latest pp results tomorrow at the vampire shop. They'll take the usual armful of blood as well hopefully my neutrophils will have improved a bit. Monday I'm of to see the Prof again to see how the hunt for a donor is progressing and maybe get a time scale for my Allo.
I hope Colin is home again soon and is not lured back to the hospital for some more of that delicious hospital food.
Take care of yourself Vicki as well as you take care of Colin.
It'll soon be all behind you and "normality" will soon be restored.
Love and best wishes
Andy & Steph xxx
Hi Peggy.
I was diagnosed in October 2010. I haven't had a sct yet and don't look like having a one till early next year. Everyone's journey with mm is different. Some make it to sct with only 3 cycles of chemo. some (rare) like me don't respond to the drugs at all. The majority fall somewhere in the middle.
My sct is going to have to be a donor transplant due to all the different drugs I've tried battering my bone marrow into submission but no unfortunately the mm.
I hope your sct is a great xmas present for you and your family and leads to a long and healthy remission.
Take care
Best wishes
Andy x
Hi Karen
A belated welcome to the forum I hope you find it a help. Sorry you've had to join us but truth be told none of us would choose to be here. I'm 54 diagnosed a year gone October after 18 months of back pain!!
Unfortunately for me I'm proving rather difficult to treat (a rare case) and have had lots of different treatments with little or no effect. I'm now on cyclophosphamide/Revlamid and DEX which is at the back end of the recognised treatments.
I'm being lined up for a Allo sct in the new year for which they have found a donor who is a good match though is in the USA! I find out more how this is coming along on Monday.
Sorry to ramble on so much and especially since my journey to date hasn't been a successful one but I'm ok at the moment I'm feeling ok and I still have options. I hope your journey isn't as difficult as mine and is more like "onwards and upwards" Toms. We're all different our treatments are all different our journeys are all different. But one thing stays the same is the fantastic support given on this forum.
So once again welcome Karen good luck and best wishes.
Andy xx
Ps. I'm on Facebook too and I'm also on one of my steroid nights 😉
Hi Vicki & Colin.
Well Colin does seem to like that hospital food. From what I've read about SCTs you do spend you first weeks of "freedom" popping back and forth to hospital so I don't think Colin is unusual in that though his haste to get back was a little to keen. You must have gone through a wide range of emotions today but with that temp he needed to be back in hospital. I really do think carers have the worst of it with this awful disease there just doesn't seem to be any let up for you. Hopefully in a few weeks time you will be able to put this little episode behind you and you'll be able to marvel at Colin's progress.
Wishing you both good times ahead.
Andy xx
