Well Andy what can I say its almost if I have started a ball rolling,did not mean to just found it strange so many treatment with out real progress or time for progress.

If I was you I would ring up your consultant and ask to see him!!! he should be able to give you time away from the clinic!!!!! don,t go on chance.

Have your list of…[Read more]

I don't envy you your position Andy… the obvious question for me is:

[b]'Are you going to allow me the chance of a SCT with my current status if my figures refuse to budge?'[/b]

If so:

[b]'At what point will this decision be made?'[/b]

If not:

[b]'Then what are the alternative treatments or maintenance regimes on…[Read more]

Hi Keith,

Further to Andy's reply I too take Rev at night but not quite so late. I recall being told to take Dex in the morning and Rev at night. As it happens I take my meds en bloc… circa 8am and 8pm. I too am on 25mg Rev and 40mg Dex but my Dex are taken once a week and my nominated day is today (Tuesdays).

Sweating for 12/16 hours…[Read more]

Hi Tina

And well done, making any decision after SCT is hard, and to make one that delay's our "Back to Normal" is even harder but I feel you are correct its too early, I was daft and jumped straight into it as soon as poss even though both consultants at both hospitals and two leading Nurses told me not to, (stuborn old cuss I am)

I also…[Read more]

Hi Alethea

Sorry you had to join us but you will have found a great site with great folk (oh and me?)

I found it easy to tell people about it, I feel that the problem shared is a problem well halved 😀 the more you have to help you bounce back up when yopu are feeling low the better 😎

I also had that depression but a half hour under…[Read more]

Hi Andy

Well am sure you know me by now ??? well am happy if my Doc is happy 😀 if he aint got a smile on his face when I go into the room am out till he has Lol, as Long as My Man says its working I dont feel the need to ask anything else 😎

And am "Onwards and Upwards"

Good Luck M8

Hi Cinzia, you are most welcome I know how difficult it is to try and find other people with AL and when you have MM to deal with to it's alot! I can only imagine how you must be feeling having children and trying your best to be strong for them and your husband I do hope your heart heals and you get your SCT do they have SAP scanners in…[Read more]

Hi Cinzia
Hello and welcome,
i think like me a lot of people have missed you joining the forum,because unless you have a related condition you tend not to go in to that subject.

My post now is just to say welcome and hope you have a good response.Eve

Hi Helen
Hope you are feeling better,not nice at the best of times,but must be an added worry with Myeloma even when in remission.

I can understand you wanting to get back to normal,and go back to work,there is a nurse on the chemo unit,who has had treatment,her words were[ i just want to be normal],I did not ask much just talked about her…[Read more]

Hi to you all
Tina I can only tell it from Slims side,had a few problems with his bladder side,it was an infection,antbiotics given.another side effect way down the list.
I must admit I gave in with Slim at one point tried commode plus bottle,to him it was a no no,I kept telling him be ok once he was feeling better,he was not having any of…[Read more]

Hi Ali,

The 'Wash & Rinse' treatment was fine at first but I became nauseous after a couple of hours and was physically sick over a 2 to 3 hour period… after that I felt drained but the anti-sicknes medication (given after the event) worked from thereon in and when I was let out I just felt washed out.:-|

iI was told by the staff that…[Read more]

Hi Cinzia, Sorry I haven't been on here in a while I have only just seen your post. My dad aged 63 had MM and AL Amyloid. He had CDT last year with a hope to harvest stem cells after his kidney function improved, he has Amyloid deposits in his tongue and some in his kidney, can I ask where they have detected yours? My Dad has to travel to London…[Read more]

Hi Gail
I am so sorry Gail,you must be beside yourself with worry.
Some times people choose there own fate and it must be awful for you to watch,it does happen some people choose,not to fight.
I can only imagine what it must be like for you as the carer.Howard is a very brave man,his decision must have been hard to not fight and leave his loved…[Read more]

Hi Gail
Howard can fight back but he needs all the help you can give him.
You do not say if he is on a ward or in ITU.!!
If he is on a ward get the dietician on board,and be there at meal times and feed him,even if it is only a few mouthfuls plus stay by his side and make him drink,its hard I did it for 22 days.Take anything in he will eat.the…[Read more]

Honest Dai I have never felt nor looked like a hero Lol.
Its a job that has to be done and we have all gone through it (Pardon the pun)

I tend to forget the times i didn't make it and had to shout Elaine (with a pitifull tone lol)

So now all well its an "Onwards and Upwards" 😎

You are my heroes Tom & Tina.;-)

I have an en-suite shower/toilet to myself. It is approximately 5 feet from my bed to the door and another four feet to the toilet… passing the sink en-route. Even so, there have been times when I have barely made it… and a few times when I failed… so you having to put on your crampons and scale the…[Read more]

Hi Keith,

I am on week 3 of Cycle 5 Rev & Dex. I take my Dex on a Tuesday and like Andy I have the morning to myself and then pretend I'm a broccoli for the rest of the day, vegging out in front of the TV or computer.;-)

I sweat… profusely. On my second cycle I had to go in for some interim bloods… on a Tuesday. The phlebotomist…[Read more]

Hi Mavis,

I had withdrawal symptoms from my CDT treatment… I went around the house shouting WHOO HOO! And.. it being near Xmas… there was a lot of carol singing as I recall.8-)

My normal medication regime carried on so the only sudden change was the disappearance of the C the D and the T… none of which I missed in the slightest……[Read more]

Hi Ali,

You might be mixing up the Hickman Line procedure with the start of the harvesting procedure.

Your Mum will spend at least 24 hours in hospital when she goes in for her chemotherapy 'Wash and Rinse' before starting her GCSF injections which will be followed by her Stem Cell Harvest. I went in at about 2pm in the afternoon, received…[Read more]

Hi Ali,

I'm also a Nottingham patient… my line was fitted in the Radiology Department and it took about 45 minutes in total.

I went to the DayCase Unit where I was talked through the procedure and made ready. I was then transported up to the radiology dept., where I had a 15 minute wait. The actual procedure, including local…[Read more]