[adamsp41Participant]

Hi Jackie…no I am not and fortunately didn't need to go on dialysis…I have just recently had a break from the myeloma x1 trial for three weeks due to poor readings of my liver…I went for my monthly review last week and my bloods and liver had recovered enough for me to go back on the trial….so it may have just been a blip…best wishes to all…stay safe…Phil

[feaseyjaneParticipant]

Hi Jackie,

Hope things are okay with you and your mum.
Haven,t started treatment yet,in the next couple of weeks I presume
Saw the Chemo nurse last week with the treatment info,the do,s and don't,s so much to take in at the moment
Please keep in touch
Stay strong and take one day at a time

Jane xxxxx

[jackie0503Participant]

Hi Phil
What is the myeloma x1 trial?
Jackie

[jackie0503Participant]

Hi Jane
Do you know what treatment you will be having?
Have you got any children? good to hear you have a supportive family.
My husband has been really patient and I have 2 beautiful girls who are 5 and 2. I have got to stay strong for them as well as my mum. Had a lovely mothers day with her and the girls yesterday, although mum has been struggling with blood pressure and had a funny turn in the morning. She was much better after a sleep.
What symptoms do you have at the moment?
Best wishes Jackie xx

[jackie0503Participant]

Hi
No ive not been to a group yet but I am hoping to soon. My family and I have booked on one of the info days with myeloma uk so hoping to get more info then.
Good to hear from you
Best wishes
Jackie

[feaseyjaneParticipant]

Morning Jackie.

I am to start 3 weekly CTD over 6. to 8 courses.and then to have a SCT if things go well.
Today am back at Haemotology to have my Hb checked as it gad dropped last week to 9.2
So am hoping I can just walk out and not have any treatment
I have 2 grow up daughters ,1 still lives at home
My husband along with the rest of my family have been wonderful.

Glad you had a wonderful Mother,s Day with your mum and she enjoyed it.
It must be hard with young children trying to juggle your own life as well as staying strong for your mum
They will be your salvation believe me.
Remember to look after yourself and have Me Time now and again it will help
Take care Jackie

Will be in touch:-D

Jane xxxxxxx

[adamsp41Participant]

Hi Jackie..it is a maintenance trial of drugs to see if some combinations are better than others and perhaps it would be better to ask your mums consultant at your next appt…link below to info on it

http://www.cancerresearchuk.org/cancer-help/trials/a-trial-looking-lenalidomide-bortezomib-myeloma-non-intensive-treatment-group-myeloma-XI

hope this helps…stay safe…Phil

[ali49Participant]

HI Jackie
I'm sorry that your Mum has had this diagnosis and it's such a shock for the whole family.
I was diagnosed two years ago and was on dialysis three times a week for a month. My blood levels improved by 50% and I was able to stop dialysis and although I have poor kidney function it's enough to get by on so that's ok! Hopefully your Mum will be able to stop dialysis eventually and I'm sure they will get her drugs right too. Poor kidney function means that drugs can be slower to leave the body than normal so become more toxic. On the other hand dialysis can clean the blood so well that some drugs are removed before they have a chance to work! So even the doctors have to have time to work out the best regime for your Mum.
I hope she will be soon feeling more positive and that all goes well
Alison

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