Hi Amelia
Your posting was near midnight,and I can sympathise how shocked and worried you must have felt,it is very hard when things start to go wrong,and by nature you must worry about it all starting over again.make sure you keep posting ,i often wish Slim was one of the lucky ones who sail through to SCT.

I cannot answer your questions,but…[Read more]

Hi Sarah
Sorry things seem so down at this moment,Sarah go and see your doctor,all the worry tears and upset is taking it,s toll on you.Get your emotions under control even if it means popping pills it will put you in a better frame of mind,it is so hard when you cannot see any light at the end of the tunnel,and the demons always seem to come out…[Read more]

Hi Carol
My husband is on Myeloma11 trials started February on ctd arm,intense pathway,got septic pneumonia in April,spent 22 days in hospital,started chemo again on less steroids,because of damage to lungs,just finishing 6 cycle,had meeting with consultant last week,no positive outcome.
left not knowing what is going to happen,talked about not…[Read more]

Hi Jo

Yep my little legs are doing ten to the dozen when I go out on bike, and yep My Young Bride and I are doing great, just starting to put a Kitchen in at home 😎 half the old one ripped out, and three wall units put up tonight 😀 Young bride now filling them up with?? it will take me ages to find things ha ha.

How are you doing then Jo…[Read more]

Hi Carol B

I am about 18 months post sct and is my energy levels pre transplant? No they aren't but they are pretty good, not sure if I could go back to my old job (physical work)but just bought a bike to try and lift my levels up (never give up) so will let you know but only been on it three times as yet:-D

Hope you still do well…[Read more]

Dear Sarah

I am so sorry to hear that Gordon is having such a terrible time. My love and prayers are with you both.
Take care. God bless
Love Jean xx

Hi Ozzy

Well I also went back to work Light duties after 6 months post stem cell transplant, yep i was tired but no probs with the legs, but have to admit I still get tired but am sure I will have to cope with it 🙂

I would see the Dr re your discomfort and am sure some one else will pop in and might have an answr for you

Good…[Read more]

Hi
Looks if Apprehensive was the right mood for me,came away feeling what a waste of time,and lots of conflicting information,when I asked for statics ,information not forth coming,on another point told bone marrow results had not improved,asked % wise damage,did not have that info but file was on desk!!!.Told all the way through everything…[Read more]

Hi Gill nice to see Stephen has got over this hurdle,it,s a roller coaster ride,all the time,I just wish it would stop for a little while.
Did not see the article you mentioned but don,t you think it is strange how much it has increased in price over 50 years,£2100,cannot see them 50 years ago paying a high price to stop pregnant women feeling…[Read more]

Hi Dai
The problem is all bookings go through,a format you have to be seen with in so many days,the request is a piece of paper marked urgent just like all the other pieces of paper,this is what is happening all over the country.If the test is in high demand,they cannot cope with this demand because of staff shortage.if you were in hospital and…[Read more]

Hi Dai
The main thing Dai is you are having the treatment ,the injections,a scan will show how the leg is doing,so try to have agood weekend,massage does help easy the pain,i spend a lot of time on Slims legs,as it help circulation ,so it is worth a try,complains some times that i am heavy handed!!!.:-P
love Eve

Hi Ivan
I cannot tell you much about alternative treatment,there are lots out there,Took me all my time to get Slim to eat at one stage,drinking water is very important as it helps the kidneys flush through,your taste buds will change from,month to month.Slims always been a wine drinker,cannot stand the stuff now:-)(more for me):-P
My advice is…[Read more]

Hi Ivan
Eve again,your on ctd,remember to take DEX in the morning,and Thalidomide last thing of a night ,but I am sure they warned you about that!!! some people get mood swings on DEX someone coined the phase Dexattude,the wife will get use to it:-P
It will not take long to adjust to everything,a chart is helpful some hospitals supply them or…[Read more]

Hi Ivan
Sorry am late in replying but a warm welcome to this great band of folk, but sorry you had to join 🙁

Good Luck on your treatment I also (in feb 2009) started my treatment CDT and that was starting with about 50 pills a day 🙁 but i done it with the stem cell harvest and the stem cell transplan in december 2009 and her I am back at…[Read more]

Hi Ivan
Just picked up on your post,welcome to the journey,may i say it is a massive learning curve,try just to take one day at a time:-)
I cannot add much more than has been said except to say,thing will get a lot better,this site will help to give you insight,and advice there are people ahead of you on this journey.
3000 people in uk a year…[Read more]

Hi Sharon
You should never have got to this position on the trials,my husband is on myeloma X1 trials CTD.When you go in for blood they ask you how you are,you have to tell them the truth,and ask to see your myeloma nurse who should be there when you see consultant ring her up.

Yes you are having a bad time,and trying to look after two kids…[Read more]

Hi Dai and Min
This is the same with Slim.Pain in heel then calf.I took him straight to Ashford hos.it was Sunday,new DVT clinic had opened.A&E.had stupid nurse telling me there was no clinic,made her go and check,agreed with me but kept us waiting 4 hours by then DVT clinic closed.started treatment injections had to come back next day for…[Read more]

Hi To You All
I am awake at this stupid hour,so I thought I would pop in,have been awake for awhile so gave in ,up made a cup of tea and here I am,wish i could get in to a good book,but my prolific reading days went out the window when mm started,Slims happy about that,as he could not get a word out of me when my head was stuck in a…[Read more]

Hi Everybody
Jo that is a lovely part of Wales you went to,only problem to many scousers,LOLthey have all emigrated from Liverpool.surprised about the weather you must have just been lucky.:-P
Bridget you seem to be going through a bad time,I know when Slims legs were swollen the more time he spent on his feet,then rested them,it helped the…[Read more]

Hi Jean,
So glad you managed a good holiday,good to get away from everything,are you sure you just have not holiday blues,specially as you had such a wonderful time,it must hit home coming back,When we go away,coming back is hard,Lovely to see the kids,but then I want to go off again in motorhome.:-S

In theory I have no reason not to be…[Read more]