[DizzylizParticipant]

Hi everybody.

It's been a long time since my last post, I have kept updated with you all but just not found the time and sometimes unable to find the words to express like so many of you do, firstly kevs not been having such a good time with his treatment (vel/dex) he finished his last cycle 8 a week ago which had been reduced by half because of the severity of PN.
Today we were at the clinic only to be told that since sept: light chains have risen by 50% and that the velcade had not stopped it in its tracks, so from today he begins the rev /dex came as abit of a shock but the way kevs been feeling it all makes sense.
In the mean time kevs awaiting treatment on his spine which is getting worse by the week so the doc is making this an urgent appt: with the spinal unit, and on top of that he as two suspicious lumps on his upper arms, the doctor sent him for X-rays straight away, I can't praise the doctors enough they've been very thorough today for which I am grateful .
It's been very hard coming on here tonight as I have been upset reading of the passing of so many lovely people but equally pleased to read of the many successful sct's and treatments also so many new people to the forum where would we be without it it's been a godsend.

Keep well everyone love liz & kev xx

[AliParticipant]

Hi Liz and Kev

Im really sorry to hear that Kevs been having a tough time of it. Hope the rev/dex gets things under control again very quickly. I know what you mean about this forum being a godsend. Its just nice to know there is someone out there understands what you are going through, whether you are the patient or the watcher.

Love to you both Ali x

[DizzylizParticipant]

Hi Ali,

Thankyou Ali I've been on autopilot these last few weeks but today I cried in clinic but kev being kev didn't know what to do bless him he just says right bring the next lot on let's get started soon as, so that's what we're doing what else can you do but try and kick this MM into touch!

Again congratulations to your mum xx
Love liz xx

[KeithH17Participant]

Hi Liz/Kev,

I too feel sorry that things are a bit of a struggle for you both. I had the full 8 cycles of Rev/Velcade which worked well in achieving remission after the first 2 cycles. I did get spasms in my hands and leg cramps when the Doctor reduced the Velcade dose after the 3rd cycle which gave relief. I went on to have sct and relapsed 7mths later. I went on to have Rev/Dex which got me to zero Proteins but hammered the Haemoglobin,Neuts and Plts and eventually stopped working after 5mths showing PP's at 30.0g/l and 38% MM activity in the marrow at BMB test.
No doubt the Medical team will be looking out for this to nip it in the bud and I hope all goes well with the treatment with a long remission.

Keith.

[tomParticipant]

Hi Liz and Kev

Am sorry to read you both are having a bad time with the Bloomin MM 🙁

And hey Liz a tear here and their is good for you trust me been done tee shirted an all, am sure it will only be a matter of time before they get a comination that will work.

Stay strong you two its the best way hard at times i know like all of us here know am afraid but it has to be done.

Love to you both

Tom "Onwards and Upwards" xxxx

[DizzylizParticipant]

Hi Keith,
Thankyou for your reply especially when your busy with your new treatment , can I ask how long inbetween treatments was the first and second sct? Because they seem reluctant to go for the second saying its too soon, his first was April 2011 relapse 8 months after remission.

Love liz & kev xx

[DizzylizParticipant]

Hello Tom

Lovely to hear from you, Thankyou for your kind words, it's great that your keeping well and so encouraging to everyone!
Keep up with your upbeat attitude Tom it makes a good read.

Keep well love liz & kev xx

[Author]

Posts