Hi Keith
When you feel well the last thing you want to do is spend time in hospital,it was always a fight to get Slim there when I thought he needed to be checked over,you tend to think you know what is best,but I know from Slim there is a fine line between being well and being confused and he crossed it many a time.

The platelets below 20 is…[Read more]

Hi Helen
Well you must be feeling rotten ,I asked should Slim have all his childhood injections again,and was told,only needed them if he had donor cells,sounds if there might be a case for having boosters.

At least you now know what it is,which must give you some peace of mind,are you having to have a lot of time off work,this cannot go down…[Read more]

Hi Sarah Jane

It,s all a bit mind blowing at first,and naturally you are worried about your child.Try to take one day at a time,and get help to sought out your problems,the easiest way to do it,is contact the Mac Millan Nurses.

They can help you with all forms,get things in place now because you will not feel like doing it later,blue…[Read more]

Hi Charlie and Mary

Glad to hear Charlie,s at home,not a bad thing to start on Velcade. I think it it is about time they used it as a first line drug,rather than second.
We all know everyone is different with all the drugs ,so I can only speak for Slim,Velcade worked,less side effects plus felt much better in himself,unable to sleep much,but…[Read more]

Hi Pat

Take this trip to hospital as a big learning curve,it is such a worry to a carer when temp goes up and BP goes down,steroids mask infections,so are very hard to spot,I now go on Slims BP,when he had pneumonia his BP went right down had him in A&E,and even they failed to spot it,although I pointed out his BP which was 60 over 45,Pat next…[Read more]

Hi Dai
Well as you know we have all been worried about you,this forum just did not seem the same with out you,Tom in his wisdom managed to get info on you,clever block that he is,when someone goes missing who usually post,it becomes a puzzle why they have not posted,do they need a break!!! are they ill!!! or worst still pushing up the…[Read more]

Hi Mike and Girlfriend

Another welcome to this exclusive site,were everybody is a patient,carer or friend,and we try to help each other out as much as possible,were here for you when you want to rant or need support.We have all been there before you and some are still here now.

Everything is do able,you must learn as much as you can,we are 2…[Read more]

Hi Etta

Treatments Zolinza or Lenalidomide or no treatment randomised,Slim go t no treatment.They are testing the new drugs as a maintenance treatment. Zolinza has been doing well treating other cancers and it is a prohibiter,no results are available as a maintenance drug as this is first time,Lenalidomide has been in use for some time and…[Read more]

Dear David

I think you have cracked it,something for everyone,just watch your back when throwing those balls,have a lovely anniversary,love Eve

Dear Rachel

I am so sorry,Paul seemed to be doing so well,and if any one should have been able to get extra time,it should have been Paul,as he was one of the younger and fitter one,s on this forum,my thoughts are with you and his parents.

I lost my grandson with an infection all so unexpected,the shock and numbness,leaves you drained,I…[Read more]

Hi Kerry

Welcome to the site,14 years is a long time,so your mum is doing very well.

What little I know about Zometa is Slim having a tooth out,was not a problem just had to be 2 weeks clear of having Zometa,told only 1%| of people get osteonecrosis very rare,so nurse or computer your best bet.I do know as time goes by Zometa does not work…[Read more]

Hi Helen

I was wondering were you were,good holiday shame about chest infection,i think there part and parcel of having a SCT,leaves your immune system so low,I think with winter coming on,I might just dose Slim with vitamins although he will moan about more tablets.

I enjoyed Venice when we went,but not to Slims taste hated the queues,went…[Read more]

Hi Mary

Slim had Claxane injections for 8 months and Thalidimide was reduced by half,he remained on the Trials ,It is a complication of the Meds,and did result in damage to his lungs,but still had SCT.

Eve

Hi Andy
I know it,s taking a long time Andy,but it is getting there,you look back at that year and wonder how you managed to get through it.

I can remember thinking about are first year and saying to a friend it cannot get any worst and it b—-y did,laughing now but at the time it just was so awful,but got through it.the body can only take so…[Read more]

Dear Mari

This is when you need this site,the ones who have been there understand what you are going through,I have been looking at Slim the past three months thinking it is not working taking to long to recover,the letter that we received a copy of read like someone ready for there coffin,all old complaints and new ones came to the surface…[Read more]

Hi David

Thank you,I have grand children out there,So it is a must,its never to late David.

How are things going with you???
Will not be long before you crocuses will be showing in the lawn,make sure you take a picture for us,what colour did you do in them. Eve

Hi Tom

Thanks for the info on Dai,new something was up.

Tom you are brave,its lovely to see grand kids,but they do tire you out,but were would we be with out them!!!.Your just braver than me.

You are doing so well,I can understand now how people feel about the 3 months,it is not until you walk out of the consultants room,that you suddenly…[Read more]

Hi Pat
Nice to see your face,took me a while just to learn how to get a picture up,I agree with you,I am growing old disgracefully,we are lucky to have a good bunch of people on here,when my husband was going through a bad time,I could not have managed with out all the help and advice I received. Time has gone on from when I joined and faces have…[Read more]

Hi Jo

If your on face book please become my friend,and I will enjoy a game of scrabble with you,i play with Jean.I would love more contact in general and play a game of scrabble.it is interesting to know about people outside the bubble.You will find me under my full name.I feel I already know you anyway.

Mike if I had to choose it has to be…[Read more]

Hi Mike
Yes mike it is like someone has switched on a light bulb,and you can see a way forward.8-)

I think at the moment we will settle for this time we have, and try not to look to far back or ahead,as both are not a nice place to be,I see the Myeloma Trials helping generations ahead,in a cure,for people who are here now I only see it buying…[Read more]