Hi Craig and etta,
Just catching up in posts. Really so pleased that it's worked out ok. As Ali and Helen has said, one day at a time. Ali, your mum sounds like she is going great guns. Not too fast though, rest as well 🙂
Vicki and Colin x
Hi eve,
How's slim doing after his SCT?
Helen, sorry to hear you've got a chest infection. Its typical and this weather does not help, cold one minute and boiling the next. Really cold here tonight and it's almost heating on…..have we missed the summer LOL!
Ali, how's your mum getting on?.
Vicki
Hi chris,
Just wondering how you got on with your harvest. Hope you got millions of those little stem cells out and that plerixafor did it's job. Hope you haven't got too many bruises from the paint balling 🙂
Vicki and Colin
Hi Joanne,
There is no doubt that this mm thing is a roller coaster. Colin has been in and out of hospital more times in the last 10 months than I can remember!. But each time they made him better and we moved on….if only we can get these blooming cells out :-(. there always seems a little something to tax us. Today Colin phoned me at work to tell me his hair had started falling out….yep a little tug and there was a good handful (and now for my next trick!. I feel so sad because whilst Colin tries to put a brave face on it, he doesn't like it. And neither do I, for him. However it's another chapter in the journey to beat mm. It is a bit gauling though considering the cycloprime did not work for Colin :-(.
What I'm trying to say, is to give you reasurance that there are lots of ups and downs, but many positives too. Sometimes there are blips…..all part of the journey.sometimes Colin and us watching all cope on different days, depending on our mindset on the day.
We really hope all goes well for your dad
Vicki and Colin x
LEs,
Welcome, hi and do not give up. My partner Colin was diagnosed age 55 last October 2011. We thought our world had come to an end, and it's true to say we are experiencing a different life at the moment, but things do get better..Colin has had 7 cycles of treatment and is awaiting an SCT. It is has not been without it's ups and downs but it is doable ;-). I. January 2011 Colin had down a weeks ski-ing, a weeks golf and we had been to Mexico where kayaking, walking etc had been done before we knew anything was wrong! We so much enjoy travel too. Do not give up…….failure is not an option (our catch phrase!). Believe it and you will be back to travelling soon 🙂
Vicki and Colin x
Pat
You stick here and we will learn about AL and you can learn about mm…..shame not to share 🙂
Vicki and Colin x
Hi there,
Welcome to the forum. My parter Colin was diagnosed with mm in October 2011, following a random blood test due to back pain. He went then from test to test, blood and urine with a final bone marrow assessment identifying myeloma due to high amount of plasma. I saw you other thread with test results. I can't really comment on what they mean as I'm not medical but Colin showed no inflammation in his results but did show a signficantly high level of bence jones light chains (31000), and a paraprotein marker of 17 (i understand this pp marker is a real give away to indicate myeloma, so he had the two big markers of bence jones and pp. He went straight on to have MRI scan and treatment, now awaiting a stem cell transplant, but as others will know he has had two failed stem cell harvests so far!
The waiting for results was an absolute nightmare, my one piece of advice is read the myeloma uk website only. Don't read so of the others as they are often way out of date and some do not contain controlled accurate information. The brain does work overdrive and tended to worsen for me as soon as my rad hit the pillow. For coli he was so so tired he used to sleep but it was very fitful. There is no hiding this is a very hard time for you but I would suggest make sure you talk to someone when you are worried….it is right a problem shared is aroblem halved. As the other half of an mm sufferer it is always a relief when Colin wants to talk about his concerns because I can take an opportunity to raise some of mine (once we have sorted his :-)). Take care and take each piece of new information in bit sized chunks and ask lots of questions 🙂
Vicki and Colin
Hi Andy, Tom, and Peter and ann
Peter, ann, sorry I missed your post. Hope you guys are doing well and Peter is progressing well with his treatment. We have been through the mill this last week, but now we are calmly waiting to hear about those other injections…..
Andy, we cannot believe that you had FOG!, you can see for miles down here , sorry to rub it in :-). Tom, we had visions of you trying to walk back from your club with your legs crossed….quite a challenge. Like you we have had glorious weather and tried to chill out. We went to friends for lunch and then visitors later, so it has been a nice relaxing time. Sometimes it feels strange to be relaxed and actually doing normal life. We sometimes forget what normal is.
Well,enjoy the rest of the weekend and sunshine, well except if you are Andy and he will probably have snow next LOL 🙂
Vicki and Colin x
Blimey Charlotte, you have been through the mill too!
Thanks for all of your background information that's really useful. You sound like you have made real progress and had to work really hard for it. It all sounded so very scary for you but really glad younger keeping yourself active. Colin is doing quite well thanks but is having trouble,harvesting stem cells (we have failed twice), but fingers crossed if we get a third chance. You know I think younger right about the kyphoplasty, I thought I read somewhere that the couldn't do it after radiotherapy as it makes the bone hard and solidifies it so your thoughts make sense.
Your use of an osteopath and meditation is quite an interesting one because Colin always says his back hurts more when he is tense so it makes sense that any muscle relaxation will help.
I am absolutely amazed at what challenges you have faced, and met :-). Good on you, and keep that positive outlook
Vicki and Colin
Hi Ali, Tom and Andy
Thanks all for your support. Ali, we did see biker chris's post and we are so so pleased for him, and hopefully us. My pessimistic side comes out a bit always but I have been positive up to now :-). I was glad I asked lots of questions despite promising to take it slow (woman's prerogative) and it has helped us. Andy you are right Colin has only had one type of chemo so we hope he's not taken too much of a hit, but he always seemed hit hard by the revlimid, so not sure if that had any impact as well. Still here's hoping!
Keep everything crossed Tom, and Andy you enjoy the lakes, inside pub or outside. There must be sun now. It's glorious down here with us southern sorties 🙂
Vicki and Colin x
Hi chris
Firstly congratulations on your marriage. And the very best of luck with your second try at harvesting. We are so pleased to hear that someone is the southwest has got prelixafor and hope it is successful for you. Colin has had two goes at south mead and both failed but that was without the magic injections! Wed be really interested to hear how you get on with it, as Gloucestershire are in the process of applying for us so that Colin an get a third attempt.
All the best, fingers crossed for you
Vicki and Colin 🙂
Hi all,
Here is plan c then! Colin and I discussed our questions beforehand and he said I excelled myself as I had a million and 1 extra ones just as our consultant answered the planned ones! I am sure it was stress :-).
Anyway the plan is they have already started the application for prelixafor and apparently they are hopeful because there is a new commissioning regime in the nhs where you can buy services and this booster injection is on the list, so here is hoping. She did say that they are 80 percent effective so there is still am chance they won't work…..:-(,'mainly because some peoples bone marrow is so battered they won't respond. We should know something in next couple of weeks but 24/9/12 for SCT is now off :-(. If the booster injections do fail then Colin won't be able to have an SCT. If that happens then apparently the next plan would be to give him a lower dose of melphalan that doesn't wipe out the bone marrow altogether and then consider maintenance treatment (not sure if that would be randomised). At first we thought this was bad news but she did say that there are now some schools of thought that don't necessarily think sct is the way to go now?. In colins case she did say that they would like to do it if they can. All in all I guess it has been an ok day, the waiting game again. I do hope we get them though or there might be a fight this time. Even the consultant will be fed up!
Will keep you posted…..this is worse than Dallas! :-). Didn't see it but missed reviews I hear LOL. We are trying to be positive!
Vicki and Colin x
Hi Joanne
Glad you posted, it took me a while too but the support gained from this forum is amazing and most welcome :-). I recently contacted the nurses as well and the responses are so detailed and quick so if you ever want to know anything, theynare great. My partner Colin was diagnosed late October 2011 and like your dad it was shocking. The treatment Colin had was similar to your dads except he did not have thalidomide, he had revlimid. Colin was emotional on those drugs too.
Like your dad Colin is waiting an SCT and has had a hickman line put in to take the drugs in and blood out etc. We were very worried about that but he/we are coping well with it. The SCT we too are very apprehensive but there are lots of good news stories on here……read musings from ward 9,that gives a blow by blow account and it helped us. Colins first attempt at harvest failed 🙁 and so did his second one this week, so just be aware of that and don't panic (like we have!), because we Are told this is not uncommon. Hope you dada second harvest goes well..Colin had the chemo prime your dad is about to have and it did make him feel a bit poorly but lasted for a few days then he started to feel better again.
All will be ok, think of Helen, Tom, debs, Ali's mum, David perky mite, Stephen……they have all got through it and check out some of their posts. It keeps us going 🙂
Vicki and Colin x
Hi Amanda,
My partner Colin is also on the myeloma 11 trial. He is awaiting an SCT if they could only get the stem cells out!!. The treatment proved effective and although we were very apprehensive and worried did the job to get him to complete remission. Yes our lives changed, but as Stephen said it's still possible to have a life. It just takes a bit of confidence and knowing where and if the limitations come. Take one step at a time
Good luck
Vicki and Colin x
Andy
Enjoy your break away with steph, and the beer. We think the weather is looking good for a while so no brollies!
Good luck with the treatment regime.professor Jackson will have a plan, they mostly do 🙂
Vicki and Colin x
