well good news, I rang up today to find out my light chain test results and my Kappas have dropped back into normal range, from 22 to 14!! Delighted of course but feeling somewhat embarassed by my over-reaction. There are lessons to be learnt methinks!

Hi Helen

I am thinking Burma or Cambodia but am slightly cautious because of high number of diseases that are out there to catch so may end up being latin america instead. The doc said I could have a light chain test now I had it on Thursday, should find out the result next Thursday so fingers crossed.

Venice sounds nice, take plenty of…[Read more]

Hi Paul

bet you are glad to be home but it will feel strange the next few weeks as you start the slow process of recovering. Seems like you had a relatively easy time of it like me, just a bit of sickness and a sore mouth. Take it easy and enjoy being free as I see what lies ahead is a mini allo, good that a donor has been lined up

Wendy

Hi Helen, pleased to say my kidney function and blood count were all absolutely normal however I couldnt cope with the ostrich approach any longer and today asked my haematology support nurse how much a light chain test would cost as I was planning a trip to Asia in November but did not want to go or book anything if it looked as if I was…[Read more]

thanks for all your replies, Eva, I have asked for a full blood count when I have Zometa on Monday, I think that is a good idea. Dai, I feel like a novice to this game when you mention your light chains. In the scheme of things I am going to try not to fret, it is only slightly outside normal range and it could be because I had an infection when…[Read more]

I am so sorry to hear about Peter, I cant imagine how you are coping but at least he is no longer suffering and was at home surrounded by his loved ones.
Love Wendy

Hi Eve
so pleased that Slim is picking up and getting better from his SCT. I started to feel alot better around the two months mark and apart from lots of colds and coughs feel back to normal (whatever that is) now (11 mths post transplant)

Wendy

Hi Andy
Its good that you are getting referred to the top man. My understanding is that the bone marrow biopsy is the determining factor in relation to myeloma. Unbeknown to me until quite recently I was genetically tested (I dont know when) and found to have two chromosomal abnormalities which affect my prognosis, monosomy 13 which is considered…[Read more]

Hi Helen

I am loving my new hair, had it cut and shaped a bit but still got the curls on top. Not dissimilar to yours actually. I went back to work about two months after my transplant, initially able to work from home, then going into the office and increasing my hours although I have decided to keep to reduced hours to achieve a better…[Read more]

thanks Jean, didnt know you were on facebook

Some more good news!!

Great news Mavis and Eliz.

I was told by my consultant that my light chains were better than his ie within normal range, so thats another 3 months all clear for me too!

Hi Alethea

sorry to hear what you have been through over the last 6 months, it sounds tough especially wih your Mum being ill as well. I found the physical limitations due to the treatment really hard to deal with but hopefully these will pass as the treatment wears off and after the transplant. I am now in remission 10 mths post transplant…[Read more]

I think it is a good idea and used to keep a daily diary of how I felt on treatment and what day of the cycle it was. I think my consultant used to dread me getting my notebook out but I didnt care!

Hi Tom
great news it is for you both, long may it continue

Wendy

Hi David
thats great news, another big sigh of relief, interesting about the water.
My 3 mth check up next Friday, so starting to stress now!
Wendy

thanks Eva for your reply, hope your very late dinner was good! I am not really a band or clip kind of girl so today I had just had enough and arranged to get my hair cut, accepted that the curls would go along with the ruffles and I definitely think it looks better and I feel better so thats the main thing! Still a few curls left on top too:-)

Hi Eve

I suppose if Slim is still having bloods and platelets it makes sense to keep it in rather than cannulating every time. I hope it doesnt take 4 hours to come out. Mine took about 45 mins to an hour to come out. It is not as horrible as having it put in and such a relief to get it out.

Wendy

Hi Eve,

mine was taken out about a week after I came out of hospital. They would have taken it out on the last day of my stay but there was no doctor available to do it. It was only put in on the day of my admission for the transplant. I think my hospital like them in for as little time as possible because of risk of infection.

Wendy

Hi Helen

Your new cut sounds fabulous and has inspired me to do something with mine as I havent had mine cut for about 12 months (and that was a crew cut in readiness for my transplant!). My hair previously dead straight and fine has grown back thick with ruffles, waves and curls, it really is quite mad looking and I dont know what to do with…[Read more]