Me again, I have just googled Caphosol, crikey "at a price" is right. Heres hoping Mums GP prescribes it! It sounds great though. Hope it works
Alison x
Hi Jacqui
I was thinking about you this morning, I remembered the date you were going into hospital. I hope you are all settled and comfortable. Is the hospital far from home? I hope it is not so it makes it easier for your family to visit.
Well, you have had the Melphalan…so here goes. Like you say, you have responded very well to your treatment so far, heres to a great result from this SCT. Stay positive and focus on the end result.
Thanks for the tip about Caphosol, I will mention it to Mum. Anything that may help is worth a try isn't it?.
If you are able please keep us posted on how you are doing.
Take care
Alison xx
Hi David,
I can imagine that the "happiness guage" was at >10 when you tasted the Guinness! I think you deserved it after all that you went through.:-)
Thanks once again for posting this, im going to try and show my Mum ( she prefers not to know any ins and outs about things ) I really do think it will be helpful to her. A friend of a friend of a friend had SCT and has spoken about it to Mum and has painted such a black picture of his time and Mum now thinks this is how its going to be for her. Whilst I understand its no walk in the park and things can be very different from one person to the next, it would be nice for her to see it how it was for you and see that you coped so well.
Take care Ali x
Hi Paul,
Im just wondering how things went with your "priming" – what does that entail please and what sort of initial tests did you have?.
Its my Mum with MM, diagnosed Nov 11 aged 57. Had 5 cycles of RCD on Myeloma IV trial and due for initial appt re SCT on Thursday this week.
I hope all runs smoothly now for you on your road to remission…….please keep us posted.
Take care Alison
Hi David
Its my Mum with MM. She is soon to have SCT. I have just been reading Musings from Ward 9. I am so glad I did, it made me smile, laugh and brought tears to my eyes. Its made me feel much more positive about whole thing now in so much that you didnt feel terrible ALL the time. Mum goes to see the consultant on thurs and hopefully we will get a date for harvesting?.
Thankyou for posting this
Take care
Alison
Hi Eve
You were kind and thoughtful enough to reply to me when I first posted on here about my Mum.
You have had the most awful time of late. Im sorry to here about your Grandson and your friend passing away. There is no wonder you feel like your world has stopped, its so unfair. I understand Slim is having his SCT today, I wish him nothing but the best, and for you too. You are obviously two very strong people, to have been through so much.
Heres hoping that this spring sunshine brings about a change, starting today. Keep smiling Eve. Please keep us posted if you are able.
Big hugs to you Alison x
Hi Dai,
Sorry you have been poorly, hope you are on the mend now. Just thought how lovely of you not wanting to spoil the ballet for everyone – what a trooper!
Take care Alison x
Hi Vicki
Light chains have never been mentioned by Mums consultant, its always the pp levels that have been the "magic number".
Andy is right though, it seems from reading on here that everyones treatment and reaction to the the treatment varies so much, and that is one of the things I am getting my head round. It certainly isnt a "one size fits all" which I suppose is a good thing at least the doctors have a few things up their sleeves!.
My advice (this is to myself too) stop looking at other websites and concentrate on this one, although its scary its full of relevant and up to date info, and continue to be positive about the future. Looking forward, Im going to be an Auntie in 3 weeks , Mums 3rd grandson so it will be all go here!
Take care both of you
Ali x
Hi Vicky and Colin
Just thought id say a quick hello.
Its my mum with Myeloma, she was diagnosed Nov 2011 aged 57 and has had 5 cycles of treatment and her PPs are also down to 1.2 from 31.5 at the start of treatment. Shes to see the consultant next week re SCT. Its all very scary stuff isnt it?. In a peculiar way we (as a family) want SCT to come and go quickly now to try and get back to some normality? I have found this site to be really helpful, although at first I had to read with my hands up to my eyes with open fingers ( like I did as a child when watching the Wizard of Oz ). I still cant believe its happening to us………..
Kind Regards Alison x
Hi Ann,
Sorry I cant help with a specific answer. My Mum was given a spreadsheet with all the different medication and on which day to take each in the cycle. Could you phone the Haematology ward at your hospital?. Just an idea….
Mum had 50+ tablets to take on some days and found it hard going, but at least she drank her quota of water before midday.
Try not to worry, I hope all goes well with the treatment.
Ali x
Morning Jacqui,
You must be very proud of your daughters! Like you say they have started their own new journey, I am sure they have friends they can share the load with and with your eldest having exams before you go in hospital, she will have plenty to concentrate on – other than this awful Myeloma. I think positive is the only way to be!
I am relieved you found the harvesting a breeze – were you there just for the day? Did you feel any ill effects afterwards?.
I hope you breeze through SCT as you did the harvesting and it will be worth it for the remission at the end of it all. Keep in touch Ali x
Hi Jacqui,
I hope you are feeling well, and pleased you are feeling positive about your SCT. Mums on the Myeloma x1 trial and is has just finished her 5th cycle of Rev,Dex and Cyclophosphamide. She too has responded well to treatment so far. You are abit further ahead in your treatment. I see you're in for your SCT the day after Mum has her first consultation. I wonder how long it will be before they do the harvesting? Did you cope ok?.
I am not surprised your children are finding it hard, I know I am. We all know what Mums are like (I am 1 myself) we always say we are fine dont we? when asked how we are doing and its hard to know exactly how "The Mum" is feeling, and of course we cannot possibly know how you are feeling, so we try to second guess if that makes sense?. I worry so much about my Mum as im sure your children worry about you. How old are your kids? Im 37. Mum just says "whatever it takes I will do". Are you planning to do something nice before SCT?, my Dad is hoping to take Mum away before hers if its at all possible – I think she deserves it!
Sorry if I have "gone on abit"!
Take care Ali x
Hi, im Alison.
Im new to the forum too. My Mum was diagnosed Nov last year also. She is now 58.
Im sure you will find a friendly welcome, support and advice here.
Do you mind if I ask what treatment you are on?
Take care
Alison x
Hi Ann and Pete
Im sorry you have to join the club, but im sure you will find lots of answers on this site.
My mum was diagnosed Nov 2011 at 57. The shock and worry is still very fresh and raw, but day by day it seems to be getting easier. Her initial treatment was really not as bad as we expected (it makes me laugh when I say we, its not like ive been taking the pills – though as a family we all share the emotional side of it) next step is a stem cell transplant.
I have felt the need to find out every detail about this awful disease, where mum prefers to know as little as possible and says whatever it takes…
Take care, both of you
Alison x
Hi, thankyou for your warm welcome. I am glad I have found you.
Phil, its fantastic to hear you are in Stringent Complete Remission – long may it continue. Also, its encouraging that you were on the same treatment as my Mum. Do you take any meds now?
Tom, moan, winge and shout? Me? My hubby would tell you I am an expert in those fields – which is partly why I have joined here – to give him a break!
Eve, I have got the booklet and have read it several times (hardly bed time reading and hard to take in!) I am going with Mum and Dad to the appointment armed with my trusty notebook.
Dai, its good to know you have been treated at City. We are lucky that we dont have to travel too far to get there. She goes mid May for the initial appt. Do you know the approx time frame from 1st appt to harvest? I would be most grateful for a talk when we know dates! Will she be able to take a laptop in with her? trivial questions I know but need to be prepared.
Take care, Alison x
