[CarolsymonsParticipant]

I was told today that I am off all drugs until review with consultant on 29th August as my cancer markers (immunoglobin a and lambda light chains) are not changing. Has anyone else been taken off CTD after only 9 weeks? I was told that the initial treatment was 12 to 18 weeks so this came as quite a shock. Mind you I am not complaining……obviously if I have been poisoning myself daily for the last 9 weeks with no result I am glad to stop the drugs, but what a failure I feel! Plus the fact that stopping the drugs was not discussed with me at all and only as I was being disconnected from the bisphosphonate and enquired as to the whereabouts of my next bag of drugs was I told by the nurse that they were stopping treatment. Have come home had a good cry and now feel really depressed. Each day as you take the toxic drugs you keep trying to convince yourself that it will be worth it …….but it wasn't.

Carol

[PeterJamesParticipant]

Hi Carol
The news from your specialist must be very gut wrenching
Remember this disease takes us all in different ways , ditto the drugs we are given
There are many more on this forum who are far more expert than me , but as I understand it , if one cocktail of drugs fails to work they will try another
It would appear that your specialist is failing to keep you in the discussion " loop "
My advice would to get as much knowledge for yourself about MM
Make a list of questions before any appointment , if possible have someone go with you to help ensure that you come away with answers
It is very easy to forget what you wish to ask in the stress / emotion at your visit
You do not say which hospital you are attending & if you have a carer
Take a deep breath , grit your teeth & stay strong
All the best
Peter

[CarolsymonsParticipant]

Peter
I am at the local hospital here in Ealing west London with a visiting consultant Dr Richard Cazmarski. My husband is here in London but all the rest of my family are in Australia. I wish I could say my husband was supportive, but as I have always been the strong one and the breadwinner in the relationship, I think it is difficult for him to cope with my sudden demise. Especially days like today when I am a blubbering wreck!

Carol

[eveParticipant]

Hi Carol

Come on we're is thar Ozzie spirit,dry your eyes and give yourself a kick up the bum:-)

Be thankful they found out it was not working in 9 weeks!!! Try doing 6 months of CDT then a B M B only to find out it no longer shows in bloods and its gone up to 80 percent in the bone marrow!!:-( .
You come out shell shocked,far to numb to cry,but these are the blips,people talk about,everyone would love to sail through treatment,have SCT,and years of remission,but sometimes it does not happen:-S

Think positive,if you are on MX1 trials Velcade is usually next step,easier simple injection,blood test before usually 2 times a week. Slim had less side effects,

Velcade. Is getting good results,I think Debbie Gasgoin,had a similar problem and I think she has been in remission for a few years now,worth going into back post,might make you more positive. Eve

[tomParticipant]

Aww Carol

Am sorry to read that 🙁 but am sure they will find one drug regime that will work for you, it just takes time.

I hope that regime is soon found and sorts that MM out for you.
Am sure you being the blubbering wreck won't last for lone am sure you will face the challenge head on.
Good luck Wendy am another one on your side

Love Tom onwards and upwards. Xxx

[eveParticipant]

Hi Tom

Vodka again Wendy!!!!! lol Love Eve:-P

[tomParticipant]

Hi Eve and yes Vodka is darn good lol xxx

[PeterJamesParticipant]

Hi Carole
You ain't demised yet , in fact a hell of a long way off !
Being blunt you need to give hubbie a short sharp course in obtaining the strength to help you , the carer is vital
I forgot to tell you , I think you should call the girls at Myeloma UK
They are very expert at advice re your treatment etc & would be able to give you considerable peace of mind
Do not delay , get in touch with them
Keep strong
Peter

[sanParticipant]

Hello Carole, you will get through this 😉 its ok to have a damm good cry and then pick yourself up and battle on, sending good wishes San x

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