[AMorgan123Participant]

Hello,

My husband was confirmed as having Stage II Multiple Myeloma on the 21st August (after initial tests began on the 13th August) and started the above trial on the 26th August.

He is 58 years old and has been off work for more than 16 weeks now with what we initially thought was a bad back.

Is anyone else on the same trail as I would love to hear from you?

Amanda.

[eveParticipant]

Hi Amanda
Welcome to the site,this site can help in lots of ways,at the moment both of you must be in shock and information coming out of your ears.
As your husband starts this journey,my husband has just finished the first part after having a SCT and is in full remission.which we hope to enjoy for as long as possible.8-)

My husband is on Myeloma X1 trials,has had SCT and will be randomised for on going treatment or no treatment.
Take one day at a time,and learn as much as you can,every one reacts different to the treatment,some sail through treatment with no problems others take longer,its easy for me to say do not worry but you will and just make time for yourself as this is your journey too.Eve

[bill2009Participant]

Hi Amanda

Bill was diagnosed with Myeloma on 5th August. He is 41 an also on the Myeloma XI trial. He is on the RCD arm of the treatment and will finish his first cycle on 5th September.
The only side effects he has experienced are leg pains, tiredness and a temperature without an infection (which goes away with the use of a fan!!).

It is a steep learning curve but we are now starting to know what to expect. The days on the dexmethasone are the best for him.

Hope this helps
Bill and Helen

[AV8RParticipant]

Hello Amanda

Like your husband, I'm also on the Myeloma XI trial. I've just completed High Dose Therapy and Stem Cell Transplant and was discharged on 18th July. I must now wait until day 100 to see how well I've responded to treatment and whether I'm to be randomised for maintenance therapy.

As Eve has said, each patient's response to treatment will be somewhat different. Her guidance to take one day at a time is also very important. There will be low days but one thing I've learnt is that, subject to any side effects, you can carry on "living" whilst receiving treatment.

There is a wealth of information much of which is out of date, inaccurate and often depressing. I've found The Myeloma UK information to be far and away the most trustworthy. Their Infoguide on Myeloma XI should answer most of your questions. Feel free to contact me direct if you think I can help.

Your husband's journey has just started. Very best wishes to you both

Stephen

[VickiParticipant]

Hi Amanda,

My partner Colin is also on the myeloma 11 trial. He is awaiting an SCT if they could only get the stem cells out!!. The treatment proved effective and although we were very apprehensive and worried did the job to get him to complete remission. Yes our lives changed, but as Stephen said it's still possible to have a life. It just takes a bit of confidence and knowing where and if the limitations come. Take one step at a time

Good luck

Vicki and Colin x

[TinaPParticipant]

Hi Amanda,

Iam on Myeloma X1 too. After finding a fractured vertebrae in December, I was put on 4 cycles of CDT. I'm having my Hickman line inserted tomorrow, then back to hospital for a couple of nights for the dose of cyclo….

Then I will have have my stem cells harvested.

All the staff at Coventry Univercity Hospital have been so helpful and friendly. I hope you have the same treatment at your hospital.

Good luck

Love
Tina

[adamsp41Participant]

Hello Amanda…I too am on the Myeloma x1 trial..was diagnosed in Jul 2010 and had CRD for 4 months and then had my SCT in Jan 2011…and am on the maintenance arm of the trial only taking Revlimid and Bonefos and am now in complete stringent remission ..as previous MM'rs have said everybody reacts differently to treatment…some sail through others struggle…best advice I got was from my clinical nurse…he said that it is best to take it one stage at a time and don't look too far ahead as you'll get yourself all mixed up… as Eve and Vicki say one day at a time and you will get there…may be bumpy but your hubby will get there…good luck…Phil

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