As Pete and Michelle have so eloquently put it, I can only agree with them. Where are you being so badly treated? Myeloma is treated with a very small armoury of drugs which are available, and show they work for some ..not all …for some time. I believe that the great majority of us get the best of what is available at this moment in time. Do…[Read more]

Dear Mandy
Devastating news for you, I took a long time to get my head round relapse and found the next toxic round of treatment difficult. I’m now in remission again and feeling more positive at last. The anger and disappointment that we feel when this disease comes back is very hard to bear. You are probably right to seek a second opinion and I…[Read more]

Yep that’s 92.2 x…… I can’t work that out! It’s a big number! 450,000,000 or there abouts. I found the whole SCT experience quite fascinating in a funny way! I just wish I’d not been on the receiving end! It is an amazing procedure.. Terribly clever how the whole process works. I’ve not been asleep before 1 most nights since diagnosis… I…[Read more]

Dear Carol
Hope it’s going well, and I don’t know if you realise the magnitude of your stem cell collection…..but that is 5 million per kilo of your body weight that they will give you back! So if you weigh 60 kilo you will get 300,000,000 stem cells back! Mind boggling eh! Good luck with it.
Helen

Dear San
I’m so sorry to read about your mums death today. I know you will miss her lots and lots. She sounded like a real lady! And I hope that Christmas and new year went peacefully for you all.
Much love
Helen

Dear David
It’s good to hear you are still getting out and about… Even if it’s only in the UK. I’m going to tackle the insurance company tomorrow to see how I’m fixed since relapse/remission……. I have my fingers firmly crossed and will not be a happy bunny if they say ‘no’
Love Helen

Hi again
I also can’t edit anything so I can’t inform you that it’s an iPad I’m using, in case you’d forgotten!;)
Helen

Hi Stuart
I’m still getting ‘participant’ ….. How can you delete the site when there is no ctrl or f5?
Helen

Hi Vikki
Good to hear you and Colin are going to go away, can’t do enough holidaying in my opinion, I must go and book one since we are talking about them!
Love Helen

Dear Carol
As said by the others take your own or get your own brought in, I sucked ice cubes I’d made from fruit juices I like and sucked them for 10 minutes before, during the infusion and 10 minutes after. I also had lots of mouth washes.
I had no mouth ulcers, in fact my mouth was the only bit of me that seemed to escape unscathed from the…[Read more]

Hi Tom
Good luck with your new treatment, I’m out the other side of it now and am beginning to feel more like myself, mind its powerful stuff! Insidious too, the PN sneaks up on you in a weird way… You almost doubt there is anything happening and you describe these vague feelings to the docs and all of a sudden you are on half the dose and…[Read more]

Hi Andy
As I’ve finally managed to login again! I wondered how you and Steph and the pomalidomide was going? I’ve not gone back to work yet…. Got shingles for Christmas on top of the numb Velcade feet! Fortunately all is resolving now.
Love Helen

Well it’s all very interesting….. We were not given any dietary advice … In fact were told there is no evidence to suggest that there is any problem with any foods as gastric acids continue to do their job!
I have eaten anything I liked or felt like eating since day 1, nearly 3 years ago, I’ve had induction chemo, SCT, relapse and second lot…[Read more]

Hi Stuart
I have the same IPad operating system as Andy and Liz .
I don’t like the new site!
I can’t log in easily…. I have to say I’ve lost my password each time. So I’m not looking or joining in as much as I used to as it is too much bother!
I can’t scroll down easily
I don’t like being a ‘participant'(especially as you have a different…[Read more]

Hello Jean
Phosphate is a tricky drug, I think you should speak to the consultant about it? Gastro problems are linked with it but if they think he needs it they may have to think of another way….. Lots of salmon and nuts? They are high in phosphates. How is frank otherwise, any less tired?
Are you all sorted for Christmas yet?
Love Helen

Dear Tom
What a blow for you, but you are right you just have to get on with it! I finished 8 rounds of Velcade in November, my feet are a bit numb still but improving every day. Energy levels not brilliant but…. I go back to work in January and my light chains are down to 7. It is all unpleasant but doable. So my friend its onwards and upwards…[Read more]

Hello Pauline and Marc
Welcome, my journey with this bunch began with the Myeloma xi trial in February 2011, I had RCD and SCT within 6 months and then had around 18 months remission. I've just recommenced treatment last week for relapse, but I'm good. Back to work tomorrow.
Hang on in there while you get used to the new life you have.
Love…

Hi Vicki
Thank you, I'm doing quite well really, tired of course but I'm feeling ok. On the dex down day so have sloped off to bed leaving the husband and neighbours carousing in the garden, I feel they have had enough exposure to my dexilicious behaviour over the weekend that they need a few hours off!

I have always been able to knit, and…[Read more]

Dear Wendy
What a blow, are you having BMB as well soon? I'm hoping there is still fluctuation room in all of this upping and downing.
I am glad you enjoyed Paris without this knowledge though, the little holidays are islands of normality. Fingers crossed for you.
Love Helen