Hi Helen

I know,its just he has been here before and it took a lot out of him then,I was told then,he may never get back to the man he was,and they were right then,but give Slim his due he is a fighter,so fingers crossed.
I think it,s just me feeling sorry for myself,have given myself a kick up the bum:-P and Tom cheered me up 🙂

Going to…[Read more]

Hello Teresa
How are you? I thought a lot about you while I was away. I'm over the jet lag now and feeling pretty good. Have you done much in your garden, mine is a wilderness, we've had so much rain every weed is 6 feet tall and all plants washed out, you get the picture!:-/
Love Helen

Dear Eve
He will be different but similar, you will both adapt to the new 'normal'. It is very hard to endure the SCT and you will both be worried sick, you are at the worst stage now, give him time and space to come round, every cell in his body has been poisoned and we can only hope that it works for a long time – keeping the alien invader ar…[Read more]

Hi David
There are some people who get much longer times than others too, i hope you are one of them. Though it is temping to look at time as a marker. And while it is an incurable disease, it's not terminal until there is nothing left to treat it with and you have overwhelming disease. Which does make it confusing. Especially now when we are in…[Read more]

Hi Vicki
Potted history
I was diagnosed 3.2.11.
Anaemic but no obvious bone or kidney damage, 60% bone marrow involved.
Started Myeloma xi trial 10.2.11, on Revlimid, Cyclophosphamide and Dexamethasone.
Went to complete remission after 2 months but 4 cycles is the minimum, so finished induction in June.
Cell harvest July,
SCT 15-17…[Read more]

Hi David
I would agree, it just makes me wish I had put a high value on are years together 30 years together and 1 year married,I ask myself why we need such a wake up call as Myeloma to value what we are loosing.
I am feeling sorry for myself better give myself a kick up the bum.Love Eve

thanks Tom

It just what I need at this moment,a lovely man cheering me up and making me smile:-) 🙂 🙂

No they did not chuck him out,i think they have done all they can for him,because of this 100 day rule we are officially under Kings which is 86 miles away,they will keep looking at his bloods to see how he responds!!!!

I bought…[Read more]

Hi again Jeant

I was just looking through the post and thought I sounded very harsh I did not mean too, and must apologies to you.you are very worried and did not need me to tell you there is no answer.
The CRD has had good results its just about finding something that does the job,all the chemo,s have side effects and because people are…[Read more]

Hi Jo And Liz

Well my grumpy old man rang me at 8am yesterday to tell me he had been discharged so off I went to collect him,but when i got there,the doctor had made a mistake on paper work,so he had to be re discharged again by 11 he was loosing the plot,so all for a mistake in the paper work,Slim discharged himself,they were desperate for his…[Read more]

Hi Jean

Once when I was in the car with Slim,he was getting very jumpy and very annoying about my driving,he use to drive most of the time,i just came in handy when he had a drink and could not drive,but on this occasion we were on are way to hospital and he was so annoying i stopped the car.

He told me not to go any further as the car was…[Read more]

Hi Everyone

Helen it is a world wide Trial but it is not in all area,s of uk. I know in the South East Dr Pocop fought to get these trials allocated here.If they were not here Slim would not be on them as the nearest place that had them was Kings in London.86 miles away and sick patients would not be able to manage it.But you have the same…[Read more]

Hi All

Dai after reading your post I realised that I was angry as well. Frank had gone to bed but I went up and told him he was going to listen to me. I told him about all of the posts and of the information that I had gotten. And he LISTENED and asked questions. One of the questions was how long have you lived with PN? Helen I asked him if he…[Read more]

Thanks Jo, Eva and Helen

I really appreciate your replies and have taken on board all that has been said. I really don't know how to describe Frank and his attitude to this bloody disease. When first diagnosed he told the family that he wanted no research done on this disease and any info that he needed to know his doctor would tell him. He…[Read more]

Hi
Oncologist this is a blood cancer were is the heamotologist ??????

Hi Jeant
My name is Eve,My husband has had CTD plus Velcade them SCT,I do not know any back ground,so it is very hard to make any comments.
The question you should be asking yourself is how much do I want to know,???

The experts have to answer your questions
So you must decide what you are going to ask.
If they are treating your husband…[Read more]

Hi Lexi
I've not experience of this but someone else might, I'd be temped to phone the specialist nurse and ask her what she thinks and explain to her that mum won't tell the doctors
Love Helen

Dear Jean
Eva's and Dai's replies are first rate I think. I can't comment on the thalidomide as I had Revlimid, but they are right that the niggling and low grade side effects and feelings of 'body out of own control ' are common side effects of what are VERY toxic and powerful drugs. Frank will have to choose his own path here but I'm with the…[Read more]

Dear All
Wendy howcome you weren't asked to do the Myeloma xi trial, i thought it was a national trial? And you were diagnosed around the same time as me.
Indeed myeloma xi is still the luck of the draw, I went on Revlimid as induction and am now on it as maintenance too. Just before the computer randomisation after SCT they asked me what I felt…[Read more]

Hi Vicki
I had several chest infections while on the induction chemo,usually at the end of the cycle too. And i never felt iller than usual nor did I have a cough. Dexamethasone is a curious drug and it has a nasty habit of hiding infection, by making you feel well and cutting inflamation, giving bugs space to sit and muliply. The best plan is to…[Read more]

Hi Wendy
Thankfully even tea and coffee and alcohol count in our neck of the woods:-) Which is good, as I say I keep forgetting where I am with it all, I have to use specific cups and cross them off a list:-/ and very sadly I can't drink wine at all now:-( As it tastes funny since I started on Revlimid.
My holiday was a fantastic experience.…[Read more]