[webteamKeymaster]

Hi Folks
Another quick guide for the newcomers section. Starting a new discussion.

Hope it helps
Stuart.

[DizzylizParticipant]

My hubby kev had his sct last week it's day 8 today he's not very well at all
Felt so useless today wanted to take it all away for him! New this was coming but it still
Upsetting for kev and me and you wonder is there a light at the end of the tunnel?
Kev was diagnosed august 2010 but had the symptoms best part of 2010
Been such a shock I think it's just sinking in.
I have found reading some of the posts on the forum very comforting although I'm
Crying while writing this message and hope it won't happen again!

[kathleenphillipsParticipant]

Hi! I'm new too. My husband has had myelome since 2009. He had his sct a year ago today! It took him about 6months to feel well again, but he is still very tired all the time. It's a big thing to take in isn't it, and I still have dark days, although I am always reassured by the advances they seem to be making. Hubbys back broke, and that is how he was diagnosed, so he gone through extensive reconstrustion of his spine too. Be gentle with yourself, and remember although your husband has got the actual cancer, you are a victim of it too, just in a different way!

[jmsmythParticipant]

Hi Liz and Kathleen

I am sorry to welcome you to this site but you will soon find out what a fantastic bunch of people are on this forum. My hubby was diagnosed in 2006 with Smouldering Myeloma. He has not had treatment but at last visit to consultant she organised a full skeletal xray and for the first time discussed treatment IF needed. Yesteday he got a letter to say he has an appointment for MRI next Wednesday. Consultant on holiday but secretary said she had not had results of xray so I am baffled and worried sick. I agree with you Kathleen – the advances they are makeing are reassuring and the experiences from friends on the forum are very comforting. I hope both your hubbys improve quickly and my very best and prayers to you both.
Love Jean x

[jmsmythParticipant]

Hi Liz I am bumping ur post up, as it may get burried under the wrong heading.
Hope I'm making sense. I understand completely the crying – I have done my fair share.
Best wishes Jean x

[jemParticipant]

Hi my dad has had this for bout ten years his been in and out of hospital used up all the treatments available now he is paralysed from the chest down there is a chance he will regain so movement just wondering if anyone has had this and is now walking again i need some hope that things will get better he is now on drug for life however long that will be have been told as little as 4 months or could be 5 years but i just want him to have a quaility of life and for my mum to have some to

[jmsmythParticipant]

Hi Jem

I am so sorry to hear about your dad. I cannot help with any info but maybe someone else on site can help.

My best to you, your dad and mum. Take care
Jean

[DizzylizParticipant]

Hi Jean, just read your post dated the 5/5/11 not had much time to post anything lately kev's had a few hiccups the past couple of weeks, trying to get to the bottom of this awful rash that's after his sct, think it's reaction to drugs he's been on and the treatment, and now since Thursday he's been having pain all over ie bones and really bad in his thigh keeps putting off ringing the hossy saying give it a couple of more days! That's men for you, I have been scouring the myeloma site to see if anyone else as experienced this after sct or he as cracked his thigh bone? When he was diagnosed he had cracked ribs and breast bone so as already had bone damage which is a worry, but come Monday I'm onto the hospital.
Sorry for rambling on.

Love liz xx

[jmsmythParticipant]

Hi Liz

Sorry to hear that Kev is having such a bad time. I know what you mean about men being stubborn. (sorry all you men out there!). I am sorry that I can't give any help on the problem that Kev is having. Sometimes posts get "way laid" or lost so maybe if you start a new topic under Treatment or Side affects with a heading on the problem – there will be someone on here that will be able to give you advice. They are a very knowledgeable on here. I hope you get sorted and my very best wishes to you both.
Love Jean. xx

[DizzylizParticipant]

Thanks Jean I will do that, let's hope someone can help?

Love liz xx

[eveParticipant]

hi Everybody
I cannot be much help to you ,only to say weekend or not make that phone call,I have learn,t that you do not hesitate,if in doubt listen to you instincts.

My husband ,has just come out of hospital,They make clinical judgement on a daily bases but at the end of the day you know your partner.
The problem seems to be everyone,reacts different to drugs,once they know the reaction from the patient,its on record and should be easier to get help.
In Kent,your doctor or main contact at hospital,will still refer you to A&E,Then the system can go wrong,as in are case,next time I will stand my ground,listen to your instincts. best wishes eve

[chrissieParticipant]

Hi, I am too am new to the forum and a carer. My son gave his dad a big hug last July. It fractured a rib and crushed a vertebra and that is how our journey began. It took from July to February to come up with the diagnosis. What distresses me most is that my husband seems so much worse since he started the treatment. He has lost so much weight and seems to have aged so much, it is making me wish he had never begun the treatment.

[DizzylizParticipant]

Hello chrissie, just been reading your post sorry to hear your news but like everybody on this forum find it a great comfort with good advice and a bit of humor aswell, these first few months of treatment are hard and also wondered is it worth what they have to go through, in our case in the beginning I would have said the same as you but now since aug: 2010 kev is finely and slowly getting better he is now 2 months post stem cell transplant and things are looking really good.

Love to you and your family chrissie and hope things get a little better each day!

Love liz xx

[greydawnParticipant]

hi there im new to this forum there is light at the end of the tunnel ive had myloma since 2000 tell your hubby to keep his chin up im not saying that it is easy but he will get there what treatment is he getting at the moment? you will both have some down days but it does get better.

[helenpageukParticipant]

Hi there everyone.
My mum (64) was diagnosed with Myeloma 3 weeks ago and has just started on the myeloma XI trial. She has been picked for the RCD trial.
She had her first lot of Zometa yesterday and unfortunately, today she is experiencing aches on her joints all over her body. Is this normal and how long will it last?

Thanks in advance

Helen

[Author]

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