Hi Sarah
Sorry things seem so down at this moment,Sarah go and see your doctor,all the worry tears and upset is taking it,s toll on you.Get your emotions under control even if it means popping pills it will put you in a better frame of mind,it is so hard when you cannot see any light at the end of the tunnel,and the demons always seem to come out…[Read more]

Thanks Tom, Pleased that you also feel like keep on "giving it a go". Sometimes I can feel my family´s disapproval when I try to do the things I did pre transplant – but the more I try the more I seem to be achieving – rather like you. My daughter says I do things now that lots of 56 year old´s have never done so why don´t I just try being a bi…[Read more]

Hi Eve, So sorry that you have been disheartened but glad you are going to see the trial nurse. Perhaps your consultant will be able to be more clear when you have next weeks bloods as the chemo does have what my consultant calls a long "shelf life" and keeps working well after we stop taking it.
There seem to be quite a few different types of…[Read more]

Hi Helen, Thanks for your reply and hope that my reply to MikeB also encourages you. I won´t say that the sct was all fun but not as bad as I had heard. One hint that I wish I had known about beforehand. Lots of people of finding that if they suck ice lollies or anything like that ALL THE TIME whilst they are giving you the high dose chemo (I…[Read more]

Thanks Mike – I hope this encourages you – just had the news that my paraprotien is at 0 !!!!!!! Can´t quite get to grips with it yet. Also odd days I seem to ge getting a bit more energy – just been for a short (a very short) little horse ride – I am now off to bed to recover but it is amazing that I can manage to do it and I am so grateful and…[Read more]

Oh Dai I really hope they get your leg sorted very soon!! It is so depressing and I am sorry if my silly post made yoy feel worse Fingers toes and eyes crossed for you love Bridget x

Dear Min well you deserved a couple of glasses of vino after the day you had!! Thank goodness the surgeon agreed to do the kyphoplasty earier ! I wish theses doctors would consider how they would feel in that situation pain makes the healing process much more difficult but apart from that Peter has had to put up with a high level of pain for such…[Read more]

Hi Carol
My husband is on Myeloma11 trials started February on ctd arm,intense pathway,got septic pneumonia in April,spent 22 days in hospital,started chemo again on less steroids,because of damage to lungs,just finishing 6 cycle,had meeting with consultant last week,no positive outcome.
left not knowing what is going to happen,talked about not…[Read more]

Hi Jo

Yep my little legs are doing ten to the dozen when I go out on bike, and yep My Young Bride and I are doing great, just starting to put a Kitchen in at home 😎 half the old one ripped out, and three wall units put up tonight 😀 Young bride now filling them up with?? it will take me ages to find things ha ha.

How are you doing then Jo…[Read more]

Good luck Jet and Keith hopefully you will be home again very soon ! It is definitely worth it so hang in there just think of being drug free ! love Bridget x

Hi Ozzy

I have not had an SCT but I have had leg and hip ache someone told me it could be the Steriods as we do have large doses during chemo this could right
Regrds Jo;-)

Hello Tom

I can just see you and the young bride on the tours of britain are your little legs going 10 to the dozen glad you are well dont fall off!!!!

Love Jo 😛

Hi Carol B

I am about 18 months post sct and is my energy levels pre transplant? No they aren't but they are pretty good, not sure if I could go back to my old job (physical work)but just bought a bike to try and lift my levels up (never give up) so will let you know but only been on it three times as yet:-D

Hope you still do well…[Read more]

I to would like to wish them both a safe journey lets hope the road is smooth with no sharp turns on the way
GOOD LUCK JET AND KIETH

lOVE jOXX

Thanks Helen that does help – it´s really encouraged me to put up with feeling rotten – I might stop whinging now!
Best wishes Carol

Sarah,
We are praying for you both.
Love Carol

Hi Ivan
No treatment other than a monthly injection to help with the anemia – but no chemo or anything. I plodded along quite well like this until last June when my paraprotien spiked when I was offered a place on the Myeloma 11 drug trial using Revlimid. This seems to be working for me at present.
Glad to hear your symptoms are minimal to…[Read more]

Dear Sarah

I am so sorry to hear that Gordon is having such a terrible time. My love and prayers are with you both.
Take care. God bless
Love Jean xx

Hi Min and Eve I just wanted to say I have never been too worried about knowing the exact paraprotein numbers on my tests, in the first few years before I became a non-secretor, I was just happy to be told they were low or static, I would have found it too stressful to keep wondering how low they were! As you say Min if you concentrate on being…[Read more]