This topic contains 40 replies, has 11 voices, and was last updated by 
CarolBradley1 12 years, 8 months ago.
Hi Everyone
First to Helen,make sure you do that trip.wonderful country,we spent three months there mainly to see family but did spend 3 weeks travelling in motorhome,from Christchurch to Auckland,one thing MM makes you realise is never put of doing things you want to do.:-)
Caro,hi have a friend in Hamilton,scouser who moved there years ago,its a very small world,and a wonderful one you just have to make the most of it,your daughter out there must be worried sick,I know my daughter found it hard to cope being away from family,thought i was hiding things from her because Slim was so ill.found Skype helps able to see and talk to her all the time,some times we manage a conference call with my other two daughters,technology is wonderful big learning curve,just like Myeloma.:-P LOL.
Anyway social side over lets talk about MM.
I as a carer found it easier to keep a big board with date and tablet days on it,some people use a special calander I think you get it from this site ring Ellen she can tell you.
Do please listen to your body,and if you feel ill please phone that help line I cannot express how important it is.!!!
Slim is9 months down the line had no remission,had a few blips on the journey,which you learn from very fast,they are use to me at the hospital now if i think he is ill and they do not take it on board.I stand my ground,so important you know your body best.
The only thing I can say with hind sight, at the begining of the month you are given your tablets,then you do not see consultant for 2 or 3 months!!.you are delt with in the Cancer unit,bloods every cycle,zometa and tablets,see cancer nurses and may be a Myeloma trial team member,They ask how you are,check list ticked,but you as a person do not know how you should feel taking Chemo,so you put things down to chemo,they do not tell you that large doses of steroids mask infections!!!!!!,so keep an eye on your blood pressure,if it starts going low that to me is the first marker that something is going wrong.It took me a long time to make that first call,did not want to be a bother,also never called an ambulance in my life,when I made that call,Slim was just confused and a bit unsteady,had been turned away from A&E on Easter Saturday,by Easter Monday,I dialled 999.Spent 9 days in ITU and 11 days on ward,biggest lesson of my life.
He is now alive and kicking and doing very well,putting on weight,and now waiting to see if Velcade is working,I hope you sail through this journey as lots of people do,have treatment get remission and you go to nz,but to me forearmed is forewarned.
The sun is out and i am off to take the dog for a long walk,Good Luck on your journey Eve
Thanks Eve
I am certainly going to do all the things I can, as I recover from the transplant I am beginning to realise how much my life had shrunk in the last few years as I became more and more tired and unable to do or plan anything really, so hopefully I can make up for some lost time.
Helen
A catch up. I'm now into my third week of CTD and finding it ok- have kept a detailed diary of my daily responses to tablets so can work out highs and lows and plan days I.e. Window cleaning and sorting out stuff on steroid days, and plonked in front of pre-recorded television on steroid dump days. The only blip so far has been a cough that took a good 10 days to go, but no temp rise and plenty of support from the team. Let's hope my bloods are showing an improvement next week when I see the consultant.. All looking positive at the moment and at least I know that I'm getting some treatment for this maddening visitor.
Carol
Hi Caz good to hear you are doing well . Sounds like you have got it sorted, the tv days after steroids are essential!! It makes a world of difference if you have faith in the health professionals too , I trust mine as like yours they know my responses very well after five years and umpteen treatments Have they suggested a date for an sct yet, if you are having one ? Heres to the rest of your treament going well love Bridget
Way to go Caz
And I wish I kept some form of notes 🙁 cos i would love to see how I reacted with all my Tabs 😀
Keep it going strong.
Love
Tom "Onwards and Upwards" xxx
It's been a few weeks since I have posted on here.The days seem to run into one another! I am on week 5 now with the Thalidomide dose doubled when I saw my Consultant. Having said it was OK two weeks ago, I'm now finding that my body responses to the steroid 'dump day's are becoming more challenging and lasting longer, possibly as a result of the cumulative effect of the chemo or the combined treatment? Hopefully it's working and I'm just becoming more tired so not able to tackle it quite as easily as at the beginning .It's definitely hard work whatever the reason! It's also difficult to explain to those who haven't been through it as the responses change throughout the day. My grandchildren are a bit puzzled by their Nanni not having any energy (but they are only little)-it must be very confusing for them.
We have a tentative plan of SCT March/April depending on response to the four cycles,and assuming MRI scans show some improvement in my 'holey bones' !
On a couple of positive notes – our eldest son has signed up to do the Ironman, Wales in Tenby next September for MyelomaUK. That's a massive physical undertaking and he is in training already. My aim is to be well enough to be there to cheer him on. Plus my daughter is coming over from NZ with her husband and two boys (aged 22 months and 11weeks) for a four week stay over Christmas -so reasons to be cheerful as Ian Drury used to sing!
Will try to catch up soon.
Carol
Hi Carol
That,s wonderful news about your family,very hard on your daughter to make that trip,but she is so far away and the worry must be awful.:-S
My daughter could not get over how Slim looked so ill!!! but saying that has now put on 1st 8lb and looks so much better has his bad days when he tries to do to much,:-( but is OKish.
When Slim had those days I had to remind him the Dex was talking,try not to do to much,and listen to your body,some times Dex mask infections,so watch your blood pressure low blood pressure to me is a marker that Slim is not well.
Do you do on Skype to talk to your daughter,I found this helped a lot,when things were bad here,it kept her in the picture better.
CTD failed for Slim and is on 6 cycle of Velcade,and working:-) expecting to do full 8cycles:-P but as Dai says what ever it takes.!!!
Just in case your are to busy and tired,I will wish you a wonderful Christmas.Seeing your daughter will be just what the doctor ordered:-)Eve
Hi Carol
Yep I think we all know about the days weeks rollinginto one 🙁 its a shame realy but when that has happened we have lost a lot of the bad bits also 😀 and thats a good thing.
As for the Grandkids we decidied not to tell ours as it wont help them or us BUT they noticed when Granddads Just not right? they dont say anything till a couple of days later then you get the tighter cuddle and the "are you better now Grandda" (well you can shed a tear if you wish cos I did) and you move on.
And also just in case am busy have a Merry Christmas 😀
Hey guys
I've had some good news today-my consultant so pleased he sent me the results. My Kappa free-light chains have dropped from 190 to 12 with just one cycle of CTD , lower than they have been for 18 months or more. I've always been just above the normal level of 3-19 and they started shooting up st the time that I broke my leg 6 months ago,and then escalated before we started the treatment. My youngest son asked me today why I looked so pleased(it is a Dexamethasone day so I felt like Smiling) had I won the lottery? Answer-Yes it feels like it and makes all the hard work worth it. Due to see Consultant next week, bloods taken again but they have to go to Birmingham and take 10 days to get the results.All positive here and let's hope it's not a blip.
Catch up soon
Carol
Hi Carol thats wonderful news!! No wonder you are walking around with a big grin and how nice of your consultant to phone you with good news Your sons question about Dex day really made me smile, it just shows how much impact Dex has on our families as well I am crossing fingers and toes that next weeks results will be more good news for you love Bridget x
So pleased for you Carol it must be like father christmas delivering a present early,:-)
Take it easy and look after yourself and enjoy this moment love Eve
Hi Carol
Well thats one stamp that was worth using I know 😎 its great to hear GREAT news and it wont be just a blip 😀
Well Done to you and your Team 😎
Love from another "Onwards and Upwards" Tom xxxxx
not been on for a while as in the deepest of France but how wonderful to log on and hear good newa Well done Carol xxx
I will catch up with all posts when I can Here we are stuck in the last centuary lovely people but nobody is surprised when the water or electricity goes off.
And no we didn't buy in this area because it is quaint the further you move from the Dordogne Provence etc the cheaper it gets. We do love it but posh it aint
Hi Carol
So glad to read your good news that CDT is having such a good response. What a good thought to take into the Christmas period. Do have a wonderful time with your NZ daughter and the rest of the family. SCT is for another day!
Love.
Mavis
Hi everyone
I ' ve been quiet until tonight! Christmas was lovely but hectic with all my lovely kids, their husbands, children etc– 4 boys under 4 and a half, but great and very noisey! .However Christmas day was a 'dump day' so a real effort, luckily they all cooked, and the food looked lovely but my right knee/ leg which I broke earlier in the year, decided to give way, and the left leg came out in sympathy.Unbeknown to me I had a cellulitis building and 4 days later ended up in hospital on IV antibiotics,what fun! Orthoepaedic teams do not understand chemo, but luckily a new and very nice Consultant decided not to stick needles in an imunocompromised patient' s knee and hoped strong antibiotics would work, following discussion with my Heamatology Cons and a microbiologist styled on something for a good 6 weeks plus. It meant that I had a two-week gap as I had a 2week course of antibiotics when I left hospital which would have compromised the CDT.
I' m now on Cycle 4, have dates for build up to stem cell capture, had my last Pamidronate for a while, hurray as it makes my knee/leg SO heavy and stops me exercising, and have an aim for stem cell transplant mid- april. All the bloods are good,free light chains are down to low normal-hurray!
Some good news, my NZ doctor daughter has lots of doctor friends, who have amazing stories of Myeloma survivors , in one case for 20 years, and they probably never knew of this website!
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