[HelenParticipant]

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

[HelenParticipant]

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 Melphalan.
Helen

[HelenParticipant]

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 worrying if it’s going to work properly…..:(
My bloods last week show 8 light chains! So we are calling it remission …hurrah 🙂 and next appointment in 8 weeks.
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 of chemo and though I’ve had a lot of infections in the time, I’ve never had food poisoning.
I just smell stuff first and decide if I want to eat it!
Helen

[HelenParticipant]

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 title! :-))
The photos are fuzzy
The ‘page’ for the discussion forum isn’t as ‘user friendly’ as before
Other than that………..
Helen

[HelenParticipant]

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

[HelenParticipant]

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 again.
Love Helen

[HelenParticipant]

Dear Ellen
You do not say, nor does the questionnaire, which department at Sheffield Uni is conducting this research. Nor does the explanation clearly state what the research will be ultimately used for.
Could the researchers clarify this?
Helen

[HelenParticipant]

Dear Carol
I didn't have the cyclophosphamide priming before collection as there were no beds, so in order not to loose my 'slot' for harvest, I had double gcsf injections for the week before harvest.
I had worked full time from diagnosis to first gcsf injection day and though I was very tired had managed ok. I took a week off for the gcsf as there is a risk that you will feel 'fluey'.
I felt terrible from about day 2 of the gcsf, as though I had been kicked in the chest by a horse, the bone pain was awful. It settled after the harvest but I was off sick for about 4 weeks, too tired to do much at all. I had 4 good days then my ASCT….. Which took me a year to recover from.
My advice is to take it easy, if you have gcsf priming you will probably not feel 100%, listen to your body.
Hope yours goes well
Helen

[HelenParticipant]

Dear Ross
As everyone else has said, and I can only copy, Dai will be sorely missed. His was the first reply to my very first post on here and he had maintained that support for the last 21/2 years. I had wondered about his health only yesterday and am so sorry to hear he has left us all. His love and support for his family and friends made him shine as a human being. I'm also sorry he didn't make his 60th birthday next month as I know it was one of his goals.
My condolences to all his family
Helen

[HelenParticipant]

Dear Eve
You made me laugh when I read about the Christmas decorations! You'll have to dust them when you take them down on 12th night!
I'm glad Slim is a little better, that makes all your efforts worthwhile. How is the dog doing on his holiday.? When does he come home?
I'm on to the 8th Velcade cycle, had to have the dose reduced as my legs were unbearably painful after 4 cycles … I've managed the rest through gritted teeth and many many painkillers, lots of lying on the sofa and grumbling at anyone who dared to come near, you really find out who your friends are when you have this disease. As soon as I can I'm going back to work, I'm so bored at home… Cabin fever I think.
Love Helen

[HelenParticipant]

Thanks Mavis I will do my best? You keep fit. Love Helen

[HelenParticipant]

Dear Carol
I'm also wimpy! Between my RCD chemo ending and harvesting was 4 weeks and I worked full time til then, feeling more and more tired but ploughing on. I went off sick when I started on the injections as they were likely to make me feel fluey and I did feel rough even though I'd had 4 weeks off chemo. Then there was 3 weeks between harvest and transplant. I felt really well….. Better than I had for 5 years for the 1WEEK before transplant. Then I took 10 months to recover from transplant before being fit enough to go back to work, and I haven't felt as well as that week since! I managed a year back at work even over my recent relapse but have been off for the last 3 months since my 3rd cycle of Velcade as this has been a more fierce treatment for me. We are all different but it can take longer for some and shorter for others, sadly I find myself in the 'longer' category!
Helen

[HelenParticipant]

Dear Eve
I'm sorry to see that Slim is in hospital again. I just hope he gets back home again soon. How soon will you get the BMB results?
Love Helen

[Author]

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