Hi Gill I dont know how I missed your post till today but I do hope they have got Stephens infection under control now. Hopefully he will be back home very soon Take care of yourself too Gill love Bridget x

Dear Sarah I hope they can get Gordon sorted out very soon . Fingers and toes crossed for you both lots of love Bridget x he will be using that blue badge before you know it !!xx

Hi Tina Thank you for replying. What is a PICC line is it something like a hickman? Did Patrick sleep alot after his Bendamustine.Sorry for all the questions I hope you dont mind,but they really havent told is what to expect, probably because they dont know

Love Sue

Im sorry to hear of Stephens infection. I sincerely hope he gets over it quickly, and is back home with your soon.
How is he otherwise Gill? is he recovering from his SCT? I remember you saying he was finding the 2nd one a struggle.
Peter will be going in soon for his 2nd one and wondered how long it may be. I believe the recovery time the 2nd…[Read more]

Hi Gill I couldnt agree more , on bad days it makes the world of difference to be able to park that little bit closer Whilst I understand how people get upset at misuseof blue badges I do get annoyed when they make judgements on how you lookSometimes I feel like brandishing an x-ray of my bones at them !! Blue Badgers ROCK!!!!

Oh Dear Sue,
I think you need to get him to take the Dex first thing in the morning so its worn off by bedtime.
Peter had just one dose of melphalan it was a mega mega dose. If you imagine when you get a dose for a stem cell harvest your given a 15% ratio per square mtr of body mass and he was given 70%. not quite the same quantity as for a…[Read more]

Hi Min Michael takes Thalidomide and DEX and the other usually stuff . He seem squite well this morning, very tired. Me well ive been up all night , first Michael was cold then hot, then hungry,about 4 oclock wanted to go for a walk, I might have got some sleep if he had!
How often does Peter have the Melphalan?

Love
Sue

Hi looby loo
Your poor Dad, has a lot on his plate and must feel exhausted. The treatment regime on its own along with the disease is very tiring, and coping with your mums condition must be really stressful for him.
Speak to a Macmillan nurse, see if she can get any respite care for your mum at a day care centre to give your dad a break of…[Read more]

Best of luck for Michael, hope it works. don't know about the Dex at lunchtime though, bet he is still awake now with it! Cant beat talking to the TV, doesn't answer back, bit like my dogs!
What else does he take with the Bendamustine? anything we haven't heard of before? Peter is recovering from his mega dose of melphalan and no doubt will…[Read more]

Its all good news Dai, and I can understand your being a little disappointed but…..Everything you read about these drugs are that the smaller the dose the better the result because smaller doses prevents the side effects which make the quality of life worse. The side effect I mean
I think I have read or listened to something on here, about…[Read more]

Hi Christin and Meike Sorry to hear about your husband/dad, my husband Michael was diagnosed at 45 years of age and he was 60 in April this year

Stay positive
Love
Sue

Hi All Just to let you know Michael started his Bendamustine today, what a long day. I think every nurse in the hospital tried to get blood from him but his veins were not having any of it, eventually they managed. The infusion took about an hour and a half then he had to sit for an hour just to see if he was ok. I must say we were looked after…[Read more]

Hear hear Its very useful for hospital appointments but Peter is not venturing very far these days. Although he did drag me to the cinema earlier this week for his Harry Potter fix.

Min

Hi Peggy
Good luck with your mammoth pill party! someone wrote on here to put them all in a carton of yogurt then they go down easier.
£40 0000 Because your worth it…..Revlamid is so easy to use from the point of view of your not tied to attending a clinic or day unit twice a week. so much less tying. But still makes you very tired…[Read more]

Hi Sarah,
On heavens if its not one thing its another with these men of ours. They cant just get one thing wrong with them it has to be a dramatic illness and one that drives us the carer out of our mind!
Blue badge… 5 days best thing we ever got out of him getting the blu*y illness. Now he has it you need to go on and get the other things…[Read more]

Hi Martin,
Sorry to hear about your Dad, my husband has MM and kidney damage from it, along with bone damage.
In truth I think only a Dr can give you the answer you want, but even then as mm is not something like High blood pressure where they know if they give you x then the result wilt be Y .
MM is far more complicated and unpredictable. But…[Read more]

Hi Sarah So sorry you had such abad time away, I did think about you both while in Whitby. Michaelwas just the opposite he felt so well, infact he even thought of not starting treatment again tomorrow, Couldnt get through to him he wouldnt feel well for long if he didnt, still it was good to have some normality even for a couple of weeks.

The…[Read more]

Hi Sarah poor Gordon not much of a break for either of you! Is the damage to his hip due to myeloma or is it steroid damage ? My right hip was destroyed by the huge doses of steroids but thhe hip replacement sorted it out and I have not had any problems with it The Blue badge is easy to apply for , its usually your local council, give them a…[Read more]

Hi everyone thankyou again for your best wishes Jo I hope you had a great week with your grandson , I bet he was excited!! I am still plodding on , but my macmillan nurse is back from leave and its been agredd she will make any changes to my drugs It was a real pain being prescribed something only to have it completely changed by the next person…[Read more]

Hi Dai congratulations on your good news and it is GOOD NEWS!! You are within the range and there is a high probability your numbers will drop even more by the time you have finished . I have heard good things about the once a week dose and if it does the trick it might be worth taking it a slower . I have no doubt you will achieve CR in the end…[Read more]