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]

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]

Hi Gina glad to hear your mum finally got started on her treatment you must be so relieved! Hopefully she will gradually get her appetite back and be able to tolerate food ok Gina your mum must be very proud of all of you and I am sure it must be a huge relief for her knowing you are fighting her corner!! lots of love to you both Bridget x

Dear Sarah if only I could do more than send you my love and a big hug I will be thinking of you.You and Gordon have been so strong together, I am sure your strength and positivity have kept him going as it will now Sarah Hang in there Sarah hopefully that slight improvement today will be an even bigger one tomorrow Love to you both Bridget x

Dear Sarah

My thoughts and prayers are with you and Gordon I do hope things will improve for him soon it must seem that tears are never ending chin up

Love Jo x

Ah Sarah…

Prayers and positive everything's winging your way… with lots of love. xxx

Where are you? Home or hospital?

Dai.

Of course… it came immediately apparent as soon as I arrived in the Day-Case Unit that no-one knew or remembered why I was there. 😛

I was sent home on Thursday with a 5 day course of Enoxoparin with instruction to come back on Monday pm for bloods and further enlightenment on the leg of destiny.

Another day, another doctor another…[Read more]

Hi Sharon,

I can hear what you are saying and I can hear what you are not saying… and it is your silences that I find extraordinarily hurtful and hard to bear.

Your Dad and your brother are your world… your side of the church wedding… and, up to your marriage and nuclear family, your entire support network. Perhaps this is why you…[Read more]

Hi Sharon I am so pleased your consultant was more willing to listen to you. It sounds as if the other doctor was sticking rigidly to the trial protocols rather than adjusting doses for your benefit In my experience of trials the overiding factor is what is best for you as a patient and although the protocols are there there is room for changes…[Read more]

So sorry to hear of you disappointing news. Dex is horrible isn´t? As if you both didn´t have enough to contend with. We live in Yorkshire so if we hear any thunderclaps we will understand perfectly.
Thinking of you and pray that your luck changes soon. Love Carol xxx

Hi Loraine
So pleased to read of you lovely, if unexpected news. How lovely for you and thank you for telling us as we all know that any good news spurs us on. Hope everything continues to go well. Carol xxxx

Hi,
Wow, I am so pleased for you, what a fantastic result. You have really encouraged me as I am at present on Revlimid (without dex)25mg and not feeling very well with it but if it works it´s worth it. Do you think they might reduce my dose – does the paraprotien have to be at 0 do you think?
Hope everything continues to go well and that you…[Read more]

Hi
Hope everything is going ok and you are getting on top of the routine – I found it very confusing to start with. Yours sounds very similar to my protocol and althought the steroids did make me feel quite upset and grumpy it has been worth it as I have come through the transplant well.
Very best of luck – if you feel grumpy you can always…[Read more]