Hi Lisa

Welcome to the site. Hope all goes well with your Dad's treatment.

Best wishes.

Mavis

Hi Polly

You came into this MM battle in a similar way to me although I managed about 17 months before I had to start treatment. I had six rounds of CDT which knocked the PP right back, although I haven't been really cracking since the treatment finished about three months ago. I coped very well during the CDT – hope you do as well. I gave…[Read more]

hi Peggy

Well all I can say is when we went up to Kings and went through the procedure with a doctor,nothing went as he said,different appointments came through some were done before stem cells taken some after!!!! Must admit i felt as confused as you,we had a similar conversation,after what we were told and what did actually take…[Read more]

Hi Cathy

Nice to hear from you,Ivan has had a rough time of it so it might take a bit longer than most to make a recovery,Slim is 5 months past SCT and is only just starting to gain weight,and still is occasionally sick.

What sickness tablets is he on??? Slim had a few different ones,its hard to eat when ever thing taste awful,if you cannot…[Read more]

Wishing you both an uneventful next few weeks, Vicki and Colin, wiht everything going to plan and not too many nasties!

And remember to take care of yourself, Vicki.

Love
Eliz
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I am glad you finally have Ivan home, even if he does have frequent hospital trips for those necessary dialysis sessions, Cathy!

My taste buds took (I think) about a month before getting anything like back to normal, so hopfully it won't bee too long for Ivan's to recover and help him gain his appetite.

Maybe try to feed him up on savoury…[Read more]

Hi Jean

Sorry can not help with the low temperature, but Slim had swollen feet,as Tom said you can get socks with loose tops it helps,I use to use Coco Butter Milk on Slims feet,a massage ever night use to help,got the circulation going,swollen feet are painful.Needs to get those feet up high a pillow under his lower legs of a night,but make…[Read more]

Hi Vikki and Colin

Just popped in to wish you the best,you do not need it though,you both seem to have the right attitude,will all be over in a months time,and although it will seem a long time to get back to good health,you do get there.Eve

Hi Angelina!

Welcome to the club none of us asked to join. I was lucky in that mine was discovered after a few months of back pain when my GP saw some reason to get blood tests done and the care of my local hospital has been nothing but exemplary.

I hope things go smoothly for you from now on. Have you had the results of your BMB…[Read more]

What a wonderful achievement, Sarah! Is there a report of how it went for them somewhere that we can read?

Eliz
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Thank you Mavis – I tend to agree I think. If you have MM..you have it regardless!

I hope this finds you well – take care xxx

Hi Eve

Thank you for getting back to me with that. I have read lots of literature and have sort of worked it out myself ( i think). I understand the process of MM and what it all entails – I'm a bit of a researcher and send myself crazy looking up this and that! I also ask for copies of the information and always take my note book and pen and…[Read more]

Hi Andy
You will get there,it sounds like a good idea to me,crack on up wards,might be worth talking to Shirley on hear,I know she has had one.
Look at Myeloma Beacon Survives people on there have been going for many years,they say it,s the nearest thing to a cure.Eve

Hi Andy

Just wanted to say Good Luck with finding a match for the All0 transplant. I have been reading about Jet's experieinces and admire those of you who decide to go down that route.

I am jealous of those of you who manage to meet up with others from the Forum, via your various hospital appointments or in a Support Group. It feels…[Read more]

Hi Kerry

From all the reading I have done, and various chats with my Consultant, I get the impression that "Staging" isn't really very helpful as a way of us working out prognosis for our MM. Some people can have heavy symptons and go on and on, and other folk can seem to be doing well and then an infection takes them off.

I do wish Melvin…[Read more]

Hi Kerry

There are books you can get to tell you all about MM if you ask Ellen the nurse I am sure she will send you some,plus what ever hospital,Melvin goes to should have given you some.

I asked and was told they do not do staging any more,which was completely different from what the books said,when we went to Kings in London,I was told…[Read more]

Hi Kerry

I have just found your original posting,full of so much detail,it does explain why you feel so frustrated and angry,I can only say I am sorry I missed it completely,like so many others.

After reading this,I think you should sit down with your consultant,and ask a few questions,the compression of the spine is not good,I do not know…[Read more]

Hi Peter…

You explained just how Melvin is. He said if it wasn't for the inability to work or resume normal activities due to the spinal cord compression, he would be able to live quite a 'normal' life while on the Dex. However – he suffers such a come down when he stops…like you, he feels so tired, almost lifeless. Only waking to eat most…[Read more]

Hi Mike

I'm sorry that you are going through a tough time at the moment. It's my partner who is 39 who has Myeloma, and is also on the MXI trial, RCD. He is at the end of the 2nd cycle at the moment. I noticed that you go to the QE hospital in Birmingham. We live in Birmingham and Melvin will be having his SCT at the QE. What a fantastic…[Read more]