[JohnoParticipant]

Hello, I have just been diagnosed with MM after months of a very painful back which turns out to be 2 fractured vertebrae, also a broken rib from turning over in bed! Initial scans, sample etc have been brilliant at Chichester. I have decided to go onto the clinical trial and I have an appointment on Tuesday to discuss what to do with my back and I will give the doctor my decision about my choice to go with the trial. One question, I believe the randomisation is run by computer, how is this done? Is it instant? Do I get an answer immediately? I would like to start the treatment as soon as possible. Thanks John

[eveParticipant]

Hi john
Welcome!! Straight to the point,yes,
You will either get CDT or CDR , good luck Eve

[JohnoParticipant]

Thanks Eve, will they start the treatment on Tuesday please? I really want to get started as soon as possible. I'm worried sick that I am going to damage my back even more, I'm already on 3 painkillers including morphine.

[eveParticipant]

Hi John
The answer normally is no.

Does depend on your back,some times you need treatment,and if this is the case they treat the back first,because that's the most important,if they consider you do not need further treatment on your back,you sometimes start a few days later after signing forms,high dose of steroids first,then a big bag of drugs,that is what happens with the mx1 trials.
Chemo gets rid of any tumours or Plasmactoma s but if you cannot stand the pain sometimes they send you for radiotherapy ,does depend on your body,
Everyone is different I can only give you an example of my husband,he had cracked vertebras plus tumour,but no spinal compression ,also lesions on shoulders and skull,whole spine and rib cage effected,taken in with AKF plus hypocalcaemia.,He started treatment the following week after treatment in hospital,
Everyone just wants to get on with treatment at first,but pace yourself,learn all you can about,Myeloma,ring Ellen or Maggie on the free line above,they can help,send you books explain things to you in detail,it all seems so over powering at first but you will get use to it all in time,keep asking questions and you will learn a lot,people on here will help you.

We have been in this Myeloma Bubble for 2 3/4 years,some people get lots of remission and some people do not.!!!!

You need to make a list of questions to ask???
What type of myeloma do you have!
How long do they think you have had it!
Is it aggressive !!! ( that's if you want to know )
Knowledge will help you make decision about your condition

Welcome to the roller coaster .Eve

[JohnoParticipant]

Eve, thank you very much for your reply. I guess I am being a bit impatient and I need to pace myself as you say. I have however already had a full bone scan, full skeletal x-rays, MRI, bone marrow biopsy (the doctor took extra bone marrow in readiness to join the trial), blood and urine tests. All in less than a week! I think by the way the consultation was going he was assuming that I would agree to the trial. On Friday the team were going to go through all the scans etc to determine my bone problems and inform me on Tuesday. I do have a list I will hand to the doctor at the beginning of the consultation on Tuesday. Soon find out I guess.
Thanks again. John

[tomParticipant]

Hi John

Welcome to the site my Friend, I wish you luck on your road to remission, its uphill at times but it is a Doable (even on bad weeks)
Listen to your body and rest when it tells you to

Tom Onwards and upwards

[VickiParticipant]

Hi John

My partner Colin also injured his back as part of the myeloma challenge! He fractured a vertebrae and they did radiotherapy. Then he was on the myeloma x1 trial which was cyclophosmahide, dexamethasone and revlimid. He did that for 7 months then he had two goes at getting the stem cells out, third time lucky and then sct in November 2012. It was sometimes a rocky road and we had a few visits to hospital with infections but the medical teams are great, they know what they are doing. Have faith, fight on and as eve said, ask lots of questions….I did that for the both so us…..still do 🙂

Best of luck

Vicki and colin xx

[Pilgrim01Participant]

Hi John,

I've also been through the Myeloma X1 trial. I started in May 2012 and had a transplant in September 2012. I too had three fractured vertebrae so know exactly what you have been through. You will be randomised twice, firstly for your initial treatment and then secondly when you go onto your maintenance treatment. In each instance this will be done immediately by computer.

Good luck and I hope this information helps.

Tim

[Author]

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