Hi Liz,

I don't often see Prof Russell but he was excellent during my harvest, not hesitating to sign off on 2 courses of Plerixafor to ensure I got the minimum 2 million cells for my SCT. His 'bedside manner' is supposedly a bit abrupt but I have always found him approachable. I usually see Dr Cathy Williams or Dr Jenny Byrne… both very…[Read more]

hello Jean
sorry frank is having a bit of PN its not very nice I was im afraid like Dia the mantra is WHAT EVER IT TAKES I will do it I was determined about it I know you will find it difficult to convince Frank but Ihope you can
Lots Of love Jo x

Hi Eve
sorry to hear slim has had a bad time of it that nurse should be sacked no other words for it hygiene should be upmost in every case but especially for people with poor immune systems really glad you can get him home he will be better of there
Lots of love Jo x

Hi Jean
Here are some tips that might help you

The anxiety is fairly normal,kicks in over silly things,Dex moments they are convinced they are right,so just remind him when he has taken his dex.Ormake a chart out of tablets then tick when anxiety starts tick under it,and you will see a patten emerge.
Massage seemed to help Slim and some one…[Read more]

Hi David

People on the Myeloma trials X1.are randomised by a computer after SCT.for maintenance therapy or no treatment,so it,s the luck of the draw.Great fun it is not.Love Eve

Hi David,

Wendy has it right… NICE approve Revlimid as a treatment for relapsed patients after Velcade. Its use as a maintenance drug is dependent on local or national trials etc., not as a right. My SCT failed after only 10 months… I have often wondered what would have happened if I had been receiving a maintenance back up such as…[Read more]

hi Karen
If your GP did an urgent referral you should have been seen with in 10 days.
Get on to your GP tell him that you have not had appointment through.This is the procedure.

Karen your pains could be a number of things,but if you start feeling sick or are in sever pain,you could have problems,after what happened to my husband I would…[Read more]

Hi Jean,

I had a similar experience to Frank when I started CDT, with what I now know to be the start of PN (Peripheral Neuropathy) problems. My feet were worse than my hands and it wasn't until I was on Velcade that it became pretty bad… to the point where I had to have the dose lowered twice.

It may be that the Thalidomide dose might…[Read more]

Hi Jean and Frank

Sorry I cant add to any of this only to send you both a CyBer (HUG). I know its scary when they tell you to come off something and have to wait for a few days before something else is sorted they might give Frank a reduced dose?

Keep strong they will soon find something that "Fits" Frank's set up.

Love and Hugs Sent…[Read more]

Just a quick reply

Min i think if you are not in a hospital that is dedicated to Myeloma your chances go down,as i said he is on a good ward fit for purpose,but when he was in A&E they were going to put him on a general ward,I told them side ward or private otherwise i take him home,someone got chucked out to provide bed.
The fact is the…[Read more]

Hi Eve and Slim
Am pleased it was caught fast enough the sooner the better 😀 and am afraid to tell you you will have more of these down the line 🙁 but if you are all on top of it as soon as it "Feels just not right" then am sure it wont last long, jump on the bugger as soon as 😎 and tell Slim its our sense of humour that helps us cope I…[Read more]

Hi Karen

Welcome to the group and i am sorry you had to join.

I hope you are soon seen I know its a worry we can do without.
I was fortunate enough to be seen pretty fast and started my treatmen within two months, and i hope this helps "I am now in remission and drug free" 😀

Good Luck in your road to remission

Love
Tom "Onwards…[Read more]

Hi Wendy

Yes I still drink at least three Litre a day.
I put mine in 500 mil Bottles and fill up from the tap, we have a water filter in the tap pull forward for normal cold and push back and it comes through the filter and I put three bottles in fridge and are refilled when empty its better to count?? but I drink more than the three ltr, I…[Read more]

Hi Sue
I am pleased you found out am sure its all too much to take in at the moment and a worry when we read things that differ from our Dr advice.

Hope all goes well

Tom "Onwards and Upwards" xx

Hi Jean
Sorry I did not send you some best wishers,when hubby started chemo ,I know how much it was getting to you,its strange when the time comes,you just accept this is the way it,s going to be:-P My thoughts have been with you,just not had the time to post much with so much going on in our lives.

Same apply,s for any one else I have…[Read more]

Hello Tom and Keith
Well he is nearly out.collecting him at 10 pm.Turns out borderline,so pumped with antibiotics lots of fluid,now having bloods and platelets,Appointments have been made for Mondays and Wednesdays for the next 100 days to check bloods.

He must be getting better because he is grumpy left him watching football,
So lets hope I…[Read more]

Hi Andy
If it is any help Slim had Velcade, and found it easier than CDT.except more visits to the hospital.Twice a week and twice a day.Bloods then Velcade hrs later.
Velcade is having a remarkable effect on some people.
Good luck Eve

Hi Ann and Peter

Yes I lost it but it comes back after treatment has stoped 🙂

Tom "Onwards and Upwards" xxx

Hello Jeant
Just wanted to say Welcome and sorry I cant add to this but am sure some one wil pop along soon to answer it.

Good Luck to your Husband on his new treatment.

Love Tom"Onwards and Upwards" xx

Hi Sue

I would phone the Nurse up on here and ask or phone the Hospital where your partner is being treated.

Sorry I cant be of more use in your Q

Tom xx