This topic contains 37 replies, has 14 voices, and was last updated by 
penniechapman 11 years, 9 months ago.
This is my first posting on this discussion site. My husband Andy – 72 going on 7 was diagnosed with myeloma 12 years ago. Cvam, two stemcell transplants and velcade and he has been doing very well, until now. Today we saw his consultant and Andy will be starting revlimid this evening. It's all a bit scary. We are aware of the potential side effects. My concern is that I have to return to work although I hope to be able to do more from home. How have others managed this transition? We would welcome your views.
Thanks,
Pennie and Andy.
Hi Pennie and Andy, I would have more than settled for half of that 12 years. I was diagnosed Nov 2007 and have had 2 SCT's and started Dex/Rev 2 weeks ago. Must watch out for Constipation/Diarrhoea (tends to switch between the two) Fatigue and leg cramps. I'm sure your hospital will keep you right with all the things to look out for.
I'm finding it a bit tough but they stay the first 4 cycles are the hardest until your body becomes accustomed to the drugs. As for work it will be there when you're not so don't worry about it and just look after Andy. There's much more to life and I'm sure you will have done more than your fair share of it.
Take care both of you and I hope it all goes well for the future.
Keith.
Hi Keith, how good to get such a swift reply, thanks. I have read it out to Andy, but not the first four are hardest bit! You are of course right about being around and I have had a positive email from work. We just don't want to add financial concerns to the emotional ones. Do hope you continue to do well. We have been most impressed with the amount of research – when Andy was first diagnosed it was c vamp and SCT – now it's velcade and revlimid as well.
Pennie
hi Pennie
You do not say how old your are,your husband is entitled to Attendance Allowance ,it is not subject to how much money you have,plus you might be entitled to carers allowance!!!.Worth seeing about .
I cannot help with the REV.but you have coped with other treatments,my husband is retired,but I do get concerned about him driving,so I drive.
Hope this is some help Eve
Hi Pennie and Andy
Well 12 years is good am expecting to beat that with my first SCT that I had in 2009 😀
After what you both have been through am sure you will cope pretty good to be fair.
Good Luck to getting Andy back into remission
Love Tom "Onwards and Upwards" xxxx
Dear Bev, how interesting! I shall make enquiries. I am 59 (60 in November. I hadn't thought about Att Allowance/Carer = I have always worked full time and my employer has been very accommodating. However today I have been totally distracted and couldn't wait to get home. The thought of losing him is overbearing.
My brother was a social worker and I shall speak to him about any benefits we may be entitled to.
Thank you.
Pennie
Thank you Tom. I know I am going to find this discussion forum of benefit, and I've only been at it 2 days! We have dealt with the last 12 years, "in house". Andy keeps quiet with his worries, not wanting to be a burden. I just want to keep him safe. what a rollercoaster! We are fortunately blessed with wonderful family and friends who are always at the end of the phone. What I am now finding helpful is hearing how others in the same position are coping.
As you say – onwards and upwards! We are both very much glass half full.
love Pennie
Hello penny,
My partner was diagnosed in october 2011,our first experience of myeloma, as we had never heard of it. Up to now Colin has been able to work either from home or at work. He works an hour and 10 minutes away so the drive is arduous in itself. However colins employers have been excellent, as have mine when I have needed to take time, particularly for hospital (unexpected admissions!). I can tell you I have been the ful range of emotions, as has Colin however this is a battle to be taken on and won (we hate to be beaten LOL!
This forum has been a godsend to both of us, whilst I do all the posting, Colin either hears the responses from me, or he's also started having a peak at the posts himself, but not written one of his own! Your post is very encouraging to us, 12 years with mm so far. An achievement:-)
Can't give any advice on benefits etc but am familiar with revlimid, Colin had it as part of induction therapy. He found that ok, it was the dexamthazone that he hated. Fatigue is his main issue.
Best of luck
Vicki and Colin x
Hi Vicky and Colin,
Thankyou for the encouraging news on revlimid. We think Andy broke his sternum last week mowing the lawn so he has been in quite a lot of pain. An xray was taken yesterday, although I have no idea what treatment can be given! I am very lucky, he never complains, I just notice the pain twitch, particularly getting out of the chair. But today he walked up and did some shopping to save me stopping on the way home to buy supper! I have been on the Govt website and it seems we may qualify for Attendance Allowance, so I shall download the information. We were told yesterday if the Revlimid works we can expect 2 years, if not, it's plan B and back to other treatments. I thought I could work through this, but after today I know I need to be home more. My employer gave me a big hug this morning which completely broke me up. Then I had to go and get some work done. I am a solicitor so I need to be focussed.
Our consultant has been great, very clear thinking with no 'faff'. We both like that!
Good luck to you both on your myeloma journey – it's a funny old disease!
love Pen and Andy.
Hi Pennie
I have to say I never fail to be amazed.
First as your brother has the knowledge let him help you,,he will be able to tick all the boxers,plus apply for disability blue badge.
It will be nothing like your wages,but you might be able to work from home,plus it will pay for some one to clean,and you can earn more money.
You and your husband have worked all your lives,this is your entitlement.
Sorry if I sound abrupt,its not with out feelings,you do have to consider the time you both have left,and make the most of it. Eve
Dear Eve, You are quite right of course! Before yesterday it never crossed either of our minds to see if we could get help from the State – We always considered we would have to look after ourselves. I think it's a generation thing – don't rely on anyone else!
Thank you for your candid message. I am on to it!
Pennie
Hi Pennie
My husband has had MM for almost 8 years and 4 of those were in complete remission with revlimid/dex. The dex side of things wasn't so great but the rev was fine. I do hope you can find a way of working around this MM and spending some good times together. My husbands cracked bones were usually treated with radiation it helped with the pain.
Hope all goes well for you two
Love Teresa.
Hi Pennie,
The median for Rev & Dex is currently 30 months (2.5 years) possibly more (plenty of examples) but possibly less.
My advice would be to take the Carers Allowance for yourself, Attendance Allowance for Andy, housing benefit if needed, and all and any other benefits due to you. It may not buy you all you are used to but it will buy you quality time together… every single day for the rest of Andy's life.8-)
You could always consider some aspect of the law for yourself later if you so wish.:-)
You have paid for all of those benefits many times over, my advice is to squash any king of infra-dig in favour of the time it offers you both.:-)
Regards
Dai.
Dear Dai and TMC – I welcome your views. My brother – who has prostate cancer – has posted forms to me and told me his neighbour can help filling them all out because that is her job! He has advised that we should get a letter from the consultant, which will make the claim easier to get through the system. Andy has felt quite well today – he cooked supper and made one of his super salads – he won't be beaten, and as I take my lead from him, I won't either!. We realise it is such early days in his treatment and that this will be no easy journey.
Thank you for such thoughful responses.
Love Pennie and Andy
Hi pennie & andy,
My hubby kev has mm and is currently on velcade/dex after relapsing in may this year, he was first diagnosed August 2010 with a broken sternum and a few cracked ribs he had radiotherapy on his sternum everyday for two weeks, helped with the pain quite a lot and at the same time help heal it, he cracked it stepping of a roadside curb and missing his footing and actually felt it go! So I hope andy gets some help with the pain kev found it very painful and was glad of the treatment.
I hope everything goes well for you and andy on this MM journey
Take care love liz & kev xx
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