Ann,

I can really understand where you are coming from. My feelings go from elated when Colin can do stuff ie yesterday some work in the garden then totally shattered by that!. And slept for most of the early evening and beyond. I can tell you I have shed some tears over this…..why us but why anybody on my sensible days! (try not to say any…[Read more]

At the moment I just have the bog standard G Myeloma so can offer no advice on the measurement of light chains. I just wanted to wish Colin well and give you a warm welcome to the site, which is the best site around for all things Myeloma.

Kindest regards – vasbyte

David

Hell Dia you have been gong through the mill. I took my chesty cough and head cold to Spain and got rid of it by giving it to all my relatives:-D .

You hang in there buddy now is the time to VASBYTE 😉 .

Kindest regards

David

?It is a funny old world?:-) .

The weather did not change and we had rain every day accept Friday! That meant that Mo vetoed the bike riding which she now considered too dangerous for me – apparently I break easy :-/ However, we decided to tour the New Forest area by car and we had a great time the irony being we both felt we enjoyed the…[Read more]

Hi Alison

Thanks for your info. I will certainly take your advice about the Internet. Keep me posted on how it goes with your mum and good luck with the impending arrival!

Vicki

Hi Ann,

I was just wondering how you and Peter are getting on with the treatment?. I tell Colin that the 'baddie'medicines are our friends because they are knocking out the nasties floating about in the blood.

Roll on when we can read they have found a cure or praps having an injection once a year!

Vicki

Hi Andy,

Thanks for your encouragement. I have read your posts and see your pps aren't moving…..yet!. Colin was told that his mm was more indicative from the bence jones light chains number, although from what I can see so far I'm the only one to mention these so far!,

I hope you get some progress soon,

Best of luck.

Vicki

Hi Ali

Hi Alison

Thanks for your reply. It looks like your mum is in a similar position to Colin. I know what you mean about reading stuff. I want to know and then catch sight of something that then makes me worry a bit. Colin is still responding and waiting to start cycle 7-delayed a week due to blood count too low!

It is really scary…[Read more]

Carol,

Thank you-it's very encouraging to hear of your activity after a SCT and that you can do normal things again.

Question I have for the medical teams though is-with the SCT how close are they for developing a process to clean totally the own stem cells returned to the patient rather than leaving a 'residue' . That would give longer…[Read more]

Tom,

Thank you. I hope you and your 'young bride' are both doing well. Thanks for the encouragement. You are right about caret word-nice to be cared for but not wanting to make our partners feel helpless!

Vicki

Ann, that would be great. It's good to know there are others out there with the same concerns!

This forum along with the medical teams can keep us buoyed up:-)

Vicki

Hi Ann,thanks so much for this. Funny but Colin loves his golf too-before the lower back pain!,

I know what you mean about the tablets and feel the same as you-guilty about posting but all the same exhausted from the worry of it. I only discovered this site yesterday and plucked up the courage to put something on today. I read a lot of the…[Read more]

You see Wendy I TOLD YOU it would be good news 😀 😀

Kindest regards to all – vasbyte

David

Hi, thanks for your reply.:-)

Colin is currently on a 3 weekly cycle of cyclophosmahide. (sorry about spelling!), dexamethasone and revlimid (lenolidomide) with the various extras of bone protection, stomach protection etc. We can't really see a pattern on the good & bad days although the steroids make him a bit hyper.

we know this is an…[Read more]

Hi Gail, Just wanted to hallo and welcome (?). You have come to the right place you will find bags of support and people who know exactly what you are going through.

I was diagnosed in Jul 09 and have had various ops and a SCT. At the moment I am ?Stable? or on a "Plateau" my PPs have been at or around 2.3 for the last 15 months. My wife,…[Read more]

Hi Ann, Just got back from my week in Spain so I am just catching up.

Helen is right the dosage is individual to all of us. Ring ward 9 at Musgrove they will, I am sure, help you.

Kindest regards – Vasbyte

David

Normally we all look for a low PP level but it is interesting that yours are at 41 and all is ok, keep going.

Kindest regards – vasabyte

David

I use IE and I have some big and some small.