Hi eva
very interesting story
you are right we have a choice about how we are with our medical teams and how informed we wish to be about our illness. I think knowledge is power and am the latter like you. I ask questions, some very difficult ones for my consultant to answer and some very stupid questions too. We dont have an adversarial…[Read more]

HI Eve
I am not sure, I thought it was just a UK trial but obviously results will be published worldwide.
Regards

Wendy

I second that Dai, I do trust my Consultant to come up with the best possible treatment regime for me when the relapse comes but know she is tied by funding constraints.
A worldwide best practice protocol would be fantastic. Surely not that difficult in this online world we now all live in. Surely not that difficult to link up trials…[Read more]

Hi Eva
What a horrendous time you have had before your relapse was properly diagnosed. Glad it is all on track now but I am horrified by the lack of care from your edinburgh doc, you are more forgiving than I would be,just as well you had private medical insurance

Wendy

Hi all
I got a horrendous cold out of the blue a couple of days ago, copious amounts of snot! That is my third cold in 7 months post transplant. Is it becuase my immunity is building up again so like a child will just get everything that is going? Is my immune system forever compromised even in remission? I dont understand!! Can anyone throw any…[Read more]

Hi Dai and Eva
Dai thanks for starting this very interesting post and Eva for your very interesting comments.
There is definitely a pathway from which there appears to be little scope for deviation. When I raised the issue of whether the SCT was the best option for me given the trend in the States against, my consultant nearly had a fit! She…[Read more]

HI David

that is great news, another sigh of relief and chance to forget about it all again. I have got my 3 month review coming up next week (7 months post transplant) and I am starting to get anxious as I am sure we all do. Hope you get better soon.

Wendy

Hi,

Sorry to hear about your Dad. I am well aware how under the radar myeloma can be but even I am pretty shocked by the low standard of care given to your Dad, even if your GP was ignorant of myeloma, like you say he should have carried out some blood tests etc. I am sure that you wont be feeling like it right now but you could complain to his…[Read more]

Hi all

yes I think it could be menopausal Lorna or a bit of both as I know skin changes etc are common post menopause and itchiness does seem to be a comnmon occurrence post transplant. Its actually all getting a little better and my eyes arent quite as itchy or dry as they were.

Regards

Wendy

Hi Gary

Your sister seems to be going through the mill right now with the treatment. I can relate to the blurred vision and the headaches and the paranoia as I had this when taking the steroids (was also on the CTD regime. The confusion I am not so sure about although I do remember a little bit of a fog which I put down to the thalidomide. I do…[Read more]

Hi All

thanks for your replies, yes me too I am hoping that I will wake up one day and wont be itchy anymore but in the meantime I will try your suggestions Shirley for my eyes. I think that they are dry more than anything as when I wake up in the morning, I can hardly open them! So hope the vistotears work.

Best Wishes

Wendy

Hi Eve,

I had two cycles of velcade at the Manchester Royal Infirmary last summer.

I was told to come in for 9am as the earlier I come the earlier they could order the velcade but I think the reality is that they waited for everyone who was due to have velcade to arrive before they ordered it. When I arrived the nurses would take blood but I…[Read more]

Helen

I just got an world wide multi trip annual policy (excluding the USA, Caribbean and Canada) with World First for £136 which I thought was pretty good. It includes Myeloma and there is the usual questions about whether and when you had the transplant. At the time I was about 3 mths post transplant. You can apply online too. However I am…[Read more]

thats good news Ian and long may you continue to be disease free!

Re chromosomal abnormalities it doesnt appear to be the case that many people are told about these or tested for these. In fact I dont know how you are tested whether through blood tests or bone marrow tests.

I have been told there is a matched potential donor in Portugal. As…[Read more]

Hi all

I thought I would update you on my mini allo research and decision. I had decided to wait and see what sort of response I had to the auto transplant and if I had complete remission or very good partial remission would settle for that and hope for a nice long remission period. So I found out on Friday that my bone marrow was less than 5%…[Read more]

Hi Belles

yes I had a stem cell transplant (my own cells) at the beginning of September on ward 44. The hospital stay was just over 2 weeks and not as bsd as I thought it was going to be and my recovery has been fairly smooth as well so far. Your mum sounds like a fighter in spite of all the complications and I really hope things do get sorted…[Read more]

Hi Belles

I think it must have been another Wendy. I was on ward 44 MRI but that was about two months ago. How is your Mum doing, I have read your posts but didnt realise that she was being treated at the MRI.

Regards

Wendy

Just to add to the above, Lyrica is pregablin which I know is quite commonly prescribed for PN.