Hi keith
Sorry you are a bit up and down at the moment but glad you are feel well with it. Just wanted to add our two penneth of moral support 🙂
Vicki and Colin x
Hi Emma and mum cathy
Welcome to the forum. My partner Colin was diagnosed in October 2011, age 56, has been through 7cycles of rcd on the myeloma 11 trial and is going in for stem cell transplant next week. Like you Emma and mum, we had never heard of myeloma before and like you I scared myself half to death with the Internet. It definitely pays to stick to sites like this for information because they are balanced and informative, as well as being able to speak with others who have the condition,lives with or knows someone that does.
Colin had a similar to start with his condition, back pain not touched by any medication, but oddly nothing else until the blood test revealed something odd and the after mri revealed he then had a wedged vertebrae in the middle if his spine t12. It is definitely a roller coaster of events with all the medication, cycles of tablets, occasional infections etc but treatment and knowledge about managing this condition is improving all the time. If we can help with any questions please ask. I might take a while to reply as I will be busy with colins SCT over the next few weeks, but will do my best.
Good luck with it and hope your mum is feelingna bit better
Vicki And Colin x
Dai,
Reading your posts I am dumb struck! Firstly what you've been through and secondly being unattended in hospital. Thank goodness you are on the mend 🙂
Vicki and Colin x
Hi all,
Chris, thanks for your good wishes and good luck to you too. Colin will be taking the iPad into hospital so he has contact with the outside world. I have already been told off for nagging Colin about making sure he eats even though the food is rubbish! I'm cooking some good Hearty food this week, and a stew on the go at the moment, for tomorrow and roast beef today! I so hope it works out well for you both:-)
Dai, it's nice to hear from you. I understand from Tom that you've been through the mill. I've read I think that your daughter is getting married shortly. Hope the day goes well and you and Janet are able to enjoy it and you can do the 'giving away' 🙂
Stephen, so good to hear from you, have been wondering how you are doing post SCT? How are you? It has been a real challenge to get to this point. As you say I can't speak highly enough of the staff at south mead. Debbie, Sally, dr sohail and dr chapda (I think that's her name). They've all put up with me looking panic stricken, asking all sorts of random questions and sitting there just waiting for something to happen! My best paranoia was asking Debbie to look at a mark on colins head that i spotted when he was asleep, wondering and panicking what it could be…….turned put to be where his glasses had dug into his head a bit, what an idiot I felt 🙂
Best wishes to all and roll on end november when fingers crossed Colin and you chris will be home 🙂
Vicki x
Hello mike
My partner Colin was diagnosed age 56 with mm in October 2011. He had 7 cycles of revlimid, cyclophosphamide and dexamethasone. We felt our world had come to an end when Colin was diagnosed. However we've ploughed through it and Colin has only yesterday successfully completed his stem cell harvest and is due for transplant 22nd of this month. It hasn't been easy for him, or me in a different way but we have gritted our teeth and got so far.
Tell your girlfriend that this forum is helpful for supporters as well. I have found it a godsend, as there are still times when I can't believe we are where we are. But you will have a good team so make the most of them.
Good luck
Vicki and Colin x
Hi Mary
Colin was on revlimid during his induction treatment Mary and he had to do a fragmen (anti blood clot) injection every day for 5 months. Revlimid, with dex and cyclophosphamide brought his pps down to zero and his light chains down to 720. It worked for him. He had a few infections but got through it. Charlie wiill soon be there too.
Like you there were, and are days when I could scream but we've got to be strong to support. Use this forum as a crutch and as I've said before the mm nurses are marvellous. Take care and best to Charlie x
Vicki and Colin x
Solo
I echo that, so so encouraging and long may it continue xx
Vicki and Colin x
Hi all
Funny I was wondering where Dai was. Next time you speak/email Janet or speak to Dai please pass on Colin and my best wishes. Fingers crossed he'll be able to walk his daughter down the aisle. My money's on Dai. He's a fighter!
Best wishes
Vicki and Colin x
Hi etta
I think this is the randomisation element of the myeloma x1 trial. They randomise you to either have maintenance treatment, I think it's lenalidomide, or not to have maintenance treatment and just leave be. I noticed this randomisation element on colins SCT plan when we received it. I think Helen takes a maintenance drug too?
Good luck with your 100 day appointment.
Vicki and Colin x
Well thanks all for your kind words and good wishes:-)
You're right, it was a battle so stage one ticked off. Colin is really shattered so we're having a really quiet time. Short turnaround for his SCT, he goes in a week Monday……22 October 2012. It's very real now! So we are going to enjoy the next few days, as long as col gets the gcsf side effects out of his system :-).
Hope you enjoyed your vodka Tom!
Ali, glad to hear your mum is doing well. That's an inspiration for us, as you all are on here!
Helen, I just spotted your post above about chest, hope you're feeling a bit better. It's a bxxxxr when you've gone through all that and catch shake off a chest infection! Don't need things to drag you down do you. Take care
Vicki and Colin x
Hi Louise and dad Garry
My partner Colin was diagnosed with mm age 56. He elected to go on the myeloma x1 trial, randomised to have revlimid, cyclophosphamide and dexamethasone. Like your family we were knocked for 6, no symptoms, had been golfing, skiing and kayaking and a walking holiday in July 2011 and the diagnosed oct 2011 after having blood test following bad back! Anyway enough of the story! Colin had 7 cycles on the trial and after 2 false starts collected 2m stem cells for transplant in a couple of weeks.
What i am trying to say is that the trial worked for him. To keep tabs on the tablets regime we did a spreadsheet so that we knew what was required and what had been taken each week. We' d also keep a little note book of what he'd eaten, how he felt each day etc. This kept a tab on food intake, mood, emotions etc. Colins emotions went up and down, I think due to steroids that Peter mentions, and he did have a few broken nights sleep, again I think due to steroids? The notes were also a good reminder to take to the consultants if there were things that happened, side effects etc that we would like to query. When I read the Internet before diagnosis I could've shot myself, there were some really depressing ones, so stick to the ones Peter mentioned. Good luck to dad and you all 🙂
Vicki and Colin c
Thanks jacqui,
Your support and thoughts are very appreciated
Vick & colin x
Hi all,
Another trip to Bristol and more stem cells, surprisingly colins count was still only 18 today, 4 higher than yesterday. That said they seemed confident they would collect the required 2 million. Well they did collect another 1.04, so in total we just got over the bar with 2.07, and that's good enough. Now they are in the bag literally, it seems a bit weird, and we both just looked at each other when we got the results!. It would have been nice to have some spares in the bag but who needs those eh!
It's been such a roller coaster so far so there has been a few tears from me this afternoon! Still as Tom would say it's onwards and upwards.
Ali, so pleased that things are looking up for your mum, and thank you for thinking of us. That goes to all of you either post SCT or those getting ready for it. So nice to relax tonight with no more injections to worry about 🙂
Vicki and a few stem cells lighter Colin x
Hi all
AT LAST WE GOT ON THE MACHINE TODAY, STEM CELLS ON THE MOVE HOORAY,
We were amazed when we go there this morning. They did not even wait for the blood test cd34 to come back. Said there was guaranteed mobilisation with plerixafor! Wow. As it turned out colins count was 14, so like chris's not great but a start. We are told this evening that he made 1.03 I assume million, and needs at least 2 mil to be a goer. So I dropped a v exhausted Colin off and I went to gloucester to get the next plerixafor. They've changed the game plan for tonight's injections, doing the double gcsf I think chris, at 7pm and then the plerixafor at 10pm tonight. I think they want to give it a big whack, then we are back down to Bristol tomorrow for another go.
The nurses were great, and those little cells coming out were Also great! 🙂
What a relief to get going, even if we only limp over the 2 mill bar!
Thanks for all your support all.
Colins asleep on the settee, I'll have to wake him up for injections and dinner,…..wonder which he'll prefer ha ha, and me, I am going to have a big glass of wine 🙂
Hope all is well with everyone, so hopefully Chris yours and colins dates will coincide so Lena and I can swap notes!
Ali, how's your mum doing?
Vicki and Colin x
Hi ann and Peter
How are things going? Have not heard from you for a while?
Vicki and Colin x
