[husbandofParticipant]

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[dickbParticipant]

Welcome to the site, there are a lot here who understand exactly what you are going through. My wife dreads it when I'm on Dexy, I become irritable, can't sleep, start bouncing around. As I have said before the carers suffer just as much if not more than the inflicted but what do you do? There is hope though, once the treatment is over, just read some of the positive posts by those who have gone through it. I wonder wether your wife realises that she is giving everyone a hard time, unfortunately none of us can do much about it

[PeterJamesParticipant]

Hi
I did six cycles of CDT , which meant four days of steroids twice in each three week cycle
The effect on me , the most placid of people was to give me a huge energy boost , got rid of all aches & pains , also made me , the most placid of people fairly aggressive , my Wife said Rambo with attitude !
Then the day after I stopped taking them , down into the black hole , totally useless for the day , no energy to do anything , soon passed
Being positive is a great help
For the the carer ie , you , as with all carers, the stress & worry is mainly on your shoulders , not easy at all
Hopefully as time passes , it will get easier as you both see the benefits of the treatment
Most important, learn as much as you can about MM , via this site or the Myeloma UK girls
All the best
Peter

[VickiParticipant]

Hi there

I am a supporter too. My partner Colin was diagnosed in 2011 October 3rd to be exact. He has been a marvel, 7 cycles of crd and a sct in November 2012. He is doing quite well over all but the bone pain it has left him with us awful. As the supporter, same as you, I feel so useless and get upset when I can't sort it…..I'm a sorter and this one is beyond me!

I know how you feel but hey as the partner it's so I portent to keep strong for them…..not easy and it feels like life's unfair but what can you do but get on with it.just focus on getting your wife through it, you can do it but there s no doubt it's hard for all of you…..been there and got the t shirt sadly, however ther e are great treatments coming on line. Steroids are a nightmare but you do get used to it!!, 🙂

Good luck

Vicki and Colin xx

[tomParticipant]

Hi Melvin

Sorry you had to join, but a warm welcome to you and your Wife.
The post was good we don't have good and or bad post we just have posts of what we are Today, as you will find out its a roller coaster am afraid but you now have us all to help you and your Wife (name?) through it all its not easy but it is a Doable.

I am the MM Person and its My Young Bride (Elaine) who looked after me during my treatment (in 2009) now she still keeps her eye on me, though am sure she always has.

My young bride and I have been a patient and a carer to and with each other as Elaine was diagnosed with breast cancer in 2009 (pleased to say all clear now) and am sure as hell know being the "Carer" is worst than being the Patient, Good Luck to you Both in this Journey to remission.
Any Q's ask away.

Tom Onwards and Upwards

[tonyfParticipant]

Hello Melvin and welcome to both you and your wife. None of this is fair, but please dont beat yourself up, you need to be strong for your wife and for your children. Like us all I bet you would rather be somewhere else, but hey, ho, we are all here to help, listen, give advice, sympathy ( if youboth need it) we are all in the same boat, but at different levels and different places,
Good luck to your wife in her journey to remission , it does seem very daunting at the start, but I'm sure you will learn more as time goes on.
Any questions, as Tom says, just ask!
Regards
Tony F

[husbandofParticipant]

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[eveParticipant]

Hi Melvin

My husband was on the MX1 trials and had 6 cycles of CDT,after that they sent him for a BMB part of trials!! In the meantime Kappa light chains were going down all looked well for remission and SCT,but when the BMB came back it showed he was no were near remission,it had gone up to 80 percent in bone marrow,treatment was looking if it worked but it had not.

The kappa light chains and PP are no longer acceptable as markers for the Myeloma,he now has BMB every 2 months.,I am told my husband is unusual and his Myeloma complicated,but when I ask why,I do not get any real answers!!!!

Over a period of 2 1/2 years we have accepted,that the only way we can tell about his condition,is BMB and his general health,I have learnt to be pushy and ask for test,my answer to consultant is prove me wrong,the only thing I cannot get is a PET scan,and I have argued a good case for it,if I go private it will cost me up to £1000 ,still keeping it in mind.Eve

[husbandofParticipant]

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[Author]

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