Peter
Glad to hear you have got through your sct, well done you! You have always been so positive and clearly that pays dividends! Colin lost all his hair, not eyebrows though. Since coming out of hospital the last month has seen a real growth spurt in the hair, beard growth etc, so it will come. Hopefully you will continue us to improve slowly but surely, taking it easy when needs be. Your positivity is an inspiration to all of us 🙂
Vicki and Colin
Hi Megan,
Glad to hear you and Phil are doing ok. That's great and no infections! Don't worry about being trigger happy with the thermometer……I still am :-)! With regard to the fatigue and sleeping through the night. Colin still gets very tired, it seems to go in fits and starts….he does a little bit too much and the bang, wiped out for a marathon sleep session. Sleeping though the night is getting better, the first couple of months he was up every night, but that is slowly getting better. Colin's mm was diagnosed following a bad bad and after some experimentation Colin was given pregabalin. He has found that fine so hopefully that will work for Phil too 🙂
Keep going it will get better, along with the weather soon!
Vicki and Colin x
Hi Tom,
Yes we did. Typical out here in the country a foot of snow…..22 miles away in town, nothing 🙂
The bmb was the usual painful numbing affair, with gas and air…..and a cup of tea for both of us afterwards! Colin had his tea and biscuit because he had all the physical pain, and mine was for the mental anguish and the nurse feeling sorry for me :-). We have to wait two weeks for the result!, Colin seems to run out of steam quite quickly, but he his out and about, but does have to have some long naps and some morning lie ins. Having nothing to measure that by we are assuming that's ok :-). All his bloods are up around the normal mark, except platelets, they've increased to 111 though!
We southern softies are getting rid of the snow now, with you guys up north suffering now :-(. Stay safe!. Colin fell over and got nagged by yours truly, and then got nagged for lack of wooly hat. Me getting good at this nagging 🙂
Vicki and Colin x
Hello Vanessa,
This disease is a shocker isn't it! And you both with a baby! :-/. Hey it is hard. It's difficult to know where to turn I release that, my partner Colin was diagnosed aged 55 and he'd not had anything wrong up until some back pain emerged, I too like you have felt mad, cheated for him and me, very very sad and sometimes not knowing which way to go.
However I can't say what the medical outcome of plateauing is, but it's worth chatting with your consultant again to understand what that means in terms of remission and more treatment. Did you consultant say whether Stewart's body was up to more treatment? Colin had to stop his at end of cycle 7 because his bone marrow had taken such a whack! We were worried about that but the risks of carrying on outweighed the benefit! Ask the consultant for a detailed understanding.
There was a guy on here called Stephen and I am sure his pps went up to 15 before his sct but they did it, and that was may/July last year. When Colin had his sct he emailed to say he had just come back from holiday in Cyprus! So, maybe it's all about an individuals body/blood? Sorry this isn't more helpful but please ask any questions and will help where we can 🙂
Take care
Vicki and Colin x
Hi graham,
Welcome to the forum! 🙂 my partner Colin was diagnosed aged 55 in October 2011, we went through the induction treatment, that's the chemo tablets, steroids and a tablet called revlimid for 21 days of the cycle. It was tough at times, he felt good sometimes and poorly others. He did manage to go to work and other times work for home. He had 7 cycles of this which brought his paraproteins down to nil and his light chains down to 750.
We too were very worried about the transplant, that's an understatement. It all sounded so scary. However the medical teams gave us confidence and knew what they were doing. Once Colin had the high dose chemo we knew there was no going back and just sat it out in hospital. There were days well Colin felt very very unwell, like sores in the mouth, sickness and tummy upsets, but he came through it. He had his transplant early November 2012 and he is touchwood on the road to recovery now!
Harvesting the cells were hard for us, we ended up having 3 goes, however we did it. It wasn't easy by any means, and there have been days since where Colin has felt so ill we wondered if it was all worth it :-), however when you get to the point where you can see someone looking better and doing a bit more, you realise it is 🙂
Go for it, if you feel it's right for you, ask lots of questions and get reassurance!
Vicki and Colin x
Yes Tom, I echo all of the thoughts above. I read that staging is not used any more!
No one mentioned staging to us and as far as I'm concerned I don't want to know. Just treat the mm and get it out of the body! Lots of effort but let's keep it going! I do understand how it's worrying though as I do enough worrying for the both so us here!
If I were you perhaps it's worth sitting down with your consultant to understand what this 'diagnosis' means in reality, as Helen says treatment is treatment and although it looks rough at the beginning they can zap it, whatever it is 🙂
Keep fighting!
Vicki and Colin x
Jean and frank,
Is frank not going for the sct now? It's a really blow when you have to wait so long in between because it gives us all time to think!
Vicki and Colin x
John
I echo toms thoughts, wow doing all that by yourself and back to work. I know what you mean about the bills but aren't there any interim benefits that you could claim so that you give yourself time to recover a bit more? You must get so tired? My partner Colin has myeloma.
Are you asking about the randomisation because you will be randomised? Following sct. My Colin will be too. We don't really know which is best, we just hope they we'll get whatever turned out to be the best! Sometimes I do wonder if its the body that is the true determinant of what is successful or not.
Good luck with your remission, you are very brave!
Vicki and Colin x
Hi ozzy
Yes my partner had a husky voice when he was on dexamethasone. We weren't sure whether that was due to that or the chemo drugs. It soon went though. His voice also seemed a bit higher than his normal tone.
Hope things work out well for you. Hope the snows not too bad where you are!
Vicki and Colin
Hi Tina,
Colin had the rash early on in his induction treatment. He was also prescribed anti histamine, he take a 10mg tablet of cetirizine every day even now. I'm convinced that stopped some of the itchy rashes as potential during sct. Perhaps you might mention this to your consultant, see what they think?
Best of luck
Vicki and Colin x
Hi Lisa
My partner Colin has just had an sct. I am always checking him temperature, whether he wants to or not ha ha! 🙂 Colin tells me he knows wye he needs it done but like the others if something is hanging about like infection I'd take it at least once a day. With regard to acts there are some schools of thought to say they aren't necessary, so all is not lost.
Vicki and Colin x
Good luck Tom, hope the dex doesn't keep you awake too much!
It is always a blow when the reality of mdedication strikes but its the hammer that cracks the mm condition on the head 🙂
Keep going 🙂
Vicki and Colin 🙂
Oh great liz, glad to hear things are on the move. We aren't, the snows bad 🙂
Hopefully we can get to the hospital tomorrow for Colin's bone marrow assessment, yuk v painful for him. Hopefully they will have some good news for us. Its just the waiting!
Hope all goes well, keep yourselves warm and safe
Vicki and Colin x
Hi Susan
My partner Colin was diagnosed in October 2011, culminating in a transplant in October, early nov 2012. We were scared from the start, read all things scary on the Internet and then found this site, a godsend. It has helped me as Colin's supporter, and Colin, although I'm the one that does all the posting!
It is very daunting, no doubt and like all the others we were v scared when it came to the sct. We knew we wanted it to happen but when it came to it…..we were scared. However once the high dose chemo had gone in we knew there was no going back. It's a very individual journey and there wre times when it wasn't easy but Colin came through it. We are now on the cusp of testing his bone marrow assessment done to see how it's gone 🙂
I'm telling you this because I hope it gives you courage and hope. Ask any questions you like and well help if we can
Good luck 🙂
Vicki and colinx
Hello tebebe
Sorry you've had to join this happy band but hey now you are here you will find lots of support! My partner Colin was diagnosed in October 2011 and had a stem cell transplant in 2012 (October-November). I am not familiar with amyloid but never mind, if there are any questions we can help you with please ask. It must be very hard to deal with and look after your children but try to keep strong, all will be well, we all have to believe that! I do 🙂
Vicki and Colin x
