bandityoga replied to the topic Light chains down again in the forum Treatment 11 years, 7 months ago
Hi Scott
Thanks for your advice. Should we ask for maintenance treatment as we have private insurance.
Let me know how you get on on Monday.
Maureen
bandityoga replied to the topic Light chains down again in the forum Treatment 11 years, 7 months ago
Hi Scott
Thanks for your reply. I asked the consultant if Ian would get a maintenance drug and he said no but Ian received zometa iv yesterday and he will get it again on his next visit in May. Is this not a maintenance drug>
Hope you can decide soon whether to go for an SCT but it is a big decision and some people get years of remission…[Read more]
bandityoga replied to the topic Stem Cell transplant, given go-ahead in the forum Treatment 11 years, 7 months ago
Hi Tom
Hope all goes well with the SCT and you get a long remission.
Maureen
bandityoga replied to the topic Light chains down again in the forum Treatment 11 years, 7 months ago
Hi Scott
Ian has had treatment stopped to let the bed sore heal but consultant thinks that 54 is near normal and doesn't think he will get more treatment. A SCT is not on the cards at the moment until we see how mobile Ian can get. Did you get maintenance treatment when you stopped treatment?
Hope your light chains come down some more.…[Read more]
bandityoga replied to the topic Anti Biotics in the forum General 11 years, 7 months ago
Hi Tom
Sorry you have been poorly. Hope you are wrapped up in your onsie with a G & T.
Take care of yourself.
Maureen & Ian
bandityoga replied to the topic Starting again in the forum Newcomers 11 years, 7 months ago
Hi
My husband started on CDT but had to stop to let a back wound heal. He wasn't tolerant of it first time but when they restarted after 6 weeks he was fine. His light chains are now 54 and he has had an excellent response. Give it another try as it really works.
Maureen
bandityoga started the topic Light chains down again. in the forum Treatment 11 years, 7 months ago
Ian's light chains are now down to 52 so he is having a good response. Thank goodness something is going his way.
He is on day 8 of antibiotics and is responding well but he has now contracted shingles.
Maureen
bandityoga replied to the topic GCSF, Neutrofils and Being Bloody Angry in the forum Treatment 11 years, 7 months ago
Dai
Hope you get this sorted out soon. Get an opinion from another consultant. You are quire entitled to do this.
NHS bah
Maureen
bandityoga replied to the topic 2 weeks in hospital in the forum General 11 years, 7 months ago
Hi Jo
Sorry to hear you have been unwell in hospital. Hope you are feeling better.
Maureen x
bandityoga replied to the topic Lovely memories but quite a few sniffles in the forum End of Life and Grief 11 years, 7 months ago
Gill
What a lovely photograph and Stephen looks so well. Look back on the happy times. Stephen would want you to enjoy life.
Sending love
Maureen x
bandityoga replied to the topic The results are in for my PP's from cycle 13 in the forum Treatment 11 years, 7 months ago
Hi Andy
Great news. have a few drinks.
Maureen & Ian
bandityoga replied to the topic MM & AL Amyloidosis…..Stem Cell Transplant info in the forum Related conditions 11 years, 7 months ago
Hi Clara
We live in Dunblane in Perthshire. We don't know if my husband will get a SCT.
It is a horrible disease and hard to cope with. How is your mum coping?
Maureen
bandityoga replied to the topic Treatment Delayed in the forum Treatment 11 years, 7 months ago
Hi Tom
I would do anything to make Ian more comfortable but yes I do have to have time to myself to.
Don't know when the treatment will resume as the bed sore has to heal before we can move forward.
Maureen
bandityoga replied to the topic Treatment Delayed in the forum Treatment 11 years, 7 months ago
Hi David
Good idea about taking the phones of the hook as most people phone me when I get back from hospital and all I want to do is relax.
Take care.
Maureen
bandityoga replied to the topic Treatment Delayed in the forum Treatment 11 years, 7 months ago
Hi Megan
I prefer to make meals and take them to Ian. He needs lots of protein to heal the bed sore. He had a visit from the dietician and is now on another menu but I have made lasagne to take in tomorrow.
Having a night off tonight and now sitting with my feet up and a small sherry.
Maureen x
bandityoga replied to the topic Treatment Delayed in the forum Treatment 11 years, 7 months ago
Hi Got the night off from visiting Ian as one of his friends is visiting. I intended to do some spring cleaning but after making lasagne and doing the ironing I am now sitting down with a small sherry and will have an early night.
Ian had an mri scan today to determine how big the bed sore is. We should get the results tomorrow.
Hope you…[Read more]
bandityoga replied to the topic Let round 14 commence in the forum Treatment 11 years, 7 months ago
Hi Andy
Enjoy your holiday in Greece. Hope all goes well with the surgery.
Ian not mobile yet.
Maureen
bandityoga replied to the topic Kidney question plus SCT question in the forum Newcomers 11 years, 7 months ago
Hi Jo
You mentioned you didn't have a SCT because of your kidneys. Did you have to take any treatment after your 4 cycles of CDT and did this give you 3 and half years remission?
I don't think Ian will be able to have a SCT so I am curious to know what happens.
Maureen
bandityoga replied to the topic MM & AL Amyloidosis…..Stem Cell Transplant info in the forum Related conditions 11 years, 7 months ago
Hi Clara
Do you live in Scotland?
Good luck with your dad's SCT
Maureen
bandityoga started the topic Treatment Delayed. in the forum Treatment 11 years, 7 months ago
Hi all
The consultants have delayed Ian's treatment to let the bed sore heal. He is now feeling a lot better and the infection seems to have gone. I was furious and complained to the Mcmillan nurse that Ian had not been moved in the night (should be every 3 hours) and that he was on his back where the bed sore is when I visited on Saturday.…[Read more]