This topic contains 36 replies, has 9 voices, and was last updated by 
Claudette 12 years, 11 months ago.
My husband was diagnosed in February this year. So far he has had CDT, Velcade and is now to try Lenalidomide. I am so distressed as the info says the normal treatment is 40mg daily but he is to have just 5mg on alternate days. This is, apparently, because he also has chronic renal failure (caused by the myeloma)and chest problems too. He has just had both hips nailed because of lesions and the danger of pathological fractures.
I am finding it extremely distressing to see a hitherto healthy, fit, non-smoking man reduced to a shadow of his former self. His quality of life is non-existent. How do others in a similar situation cope with all this?
He has never smoked in his whole life and it all seems so unfair. Is there any hope?
Hi Chrissie I know its awful when you first hear the words that tell you your loved one has myeloma At the moment I am sure everything seems very scary with all the drugs and terminology But things will get easier as he carries on with his treatment and you will see him looking and feeling better . It sounds as if his doctors are being cautious in giving him a lower dose of Lenalidomide which they must be to protect his kidneys Has he got a specialist nurse? If so perhaps you could have a chat with her or him . she will be up to speed with your husbands treatment and able to answer any questions you have. We all go through the Why Me? stage I am sure but there arent any answers to that question ! Life will get better for you both and it even becomes quite normal again Hi quality of life will get better too as the drugs take effect, I was very ill when first diagnosed and couldnt believe life could be good again but it is !!There are so many new treatments now which means we can look forward to many more years ahead Keep posting there are lots of people on this site whose partners have myeloma and I am sure they remember only too well how bad they felt at the beginning so that may help I hope your husband starts to feel better very soon Bridget
Hello Bridget,
Thank you for your words of encouragement. May I please ask how long it took for you to feel better again? David seems to have been going nowhere forward after eight months of treatments which have had no impact on his condition. He is in and out of hospital, which he hates, his potassium levels rise and he is given treatment to lower it, then it goes too low and he is put on a drip to raise it!! We are both feeling totally drained.
Hi Chrissie
My name is Eve and I have watched my husband go from a very health man to someone who lost 4 st and lost 5inches in height,and yes I thought I was going to lose him.CTD did not work,Velcade is working for him.so I do have some idea how you feel.
You have to take it one day at a time,and when the good days are there enjoy them.his quality of life will improve if they can find the right drug,and you have to keep telling him he will get better.Lenalidomide has had good results,doctors are thinking, some times less more often is the way to go.
Look on here at the new trials starting it might help,also there is Susan husband and Bridget who are well ahead of your husband,think you might find it under treatment,It will give you some hope for the future.
I can tell you if they can find the right chemo,he will improve,you may not be able to believe it,but you will get there,I was told my husband might die in ITU,he survived, CTD did not work 80% Myeloma in bones,Velcade working 10% in bones now,still along way to go,but you have to have the believe,that you will get there,and every time he falters,you have to be strong.
This site and the people on it,has kept me going through the bad times,because you will always find someone on here who is ahead of you,I am sure Bridget will reply to you,it will make you realise that there is hope,you are just unfortunate to be on a longer journey than most,Its been over a year for us.We have only just received a little bit of good news. EVE.
Thank you Eve, it is comforting to know there is some hope. David,too, ended up in ITU after having both hips nailed due to the damage done by this horrible disease. He was unable to have a GA because of his chest problems so had it done under an epidural. He had an embolus that travelled to his lung. Very scary but his recovery from that was remarkable so he is a fighter. I feel it is me who is faltering! To see the weight dropping off him is awful in itself as he was always very slim.
He has also lost 4 inches in height! I am finding this site very helpful as it is good to get things off my chest.
Chrissie
Hi Chrissie it did take several months before I felt the benefit , I was diagnosed in August 2006 I then had induction chemo before having a stem cell transplant in April 2007 It took most of that year to feel well again and then I had to have a hip replacement as the steroids had destroyed my hip joint! I agree with Eve one day at a time helps get you through it. I understand how down David must feel as I hate having to go in to hospital but there are times when we have no choice Hopefully they will get his potassium levels sorted very soon and he should start to improve No wonder you are both exhausted though have you got family to support you? If you are offered help please take it even if it is hospital visiting to give you a break My e-mail address is bridget.rochfort@btinternet.com if you want to contact me Hang in there Chrissie it will get better Bridget
Hi Chrissie
I know its difficult but you will find the strength to cope with whatever is thrown at you.
You will be surprised at the inner reserves you will find from goodness knows where. But it will get easier as time goes on. Your husband has a lot to cope with and he will be afraid as much for you as for himself so let him see that you are coping.
You dont say what age he is, does he normaly work ? Money worries are a big cause for concern at the outset and these can be reduced if you claim whatever is available like Disability living allowances etc.
I know that the hospital visiting and housework and meals etc etc are a dreadful burden when your used to sharing these tasks, do you have any help at all to make it a little easier.
Let the dust build up, and the ironing and do whatever makes you feel less tired. Sleep when and if you can and see your GP for some help to cope.
Then come back and tell us how he is doing its a marathon not a race looking after mm ers and patience is a virtue as there are long times between treatments and results.
Most important look after yourself and take some time out for rest if its possible. You cant care for him if your run down and worn out so take care.
Regards MIn
Hello Min,
I have just read your reply to me and also your post regarding Peter's funeral. I have lain in bed many nights worrying about that same thing.
Your story and the many replies you received have been a great source of comfort to me. I saw a quotation somewhere which goes 'I know God won't give me more than I can handle, I just wish he didn't trust me so much' and that is exactly how I am feeling right now. David was 70 when diagnosed so work is not an issue. Luckily we do not have money worries but we don't have any family living near us so I have to manage on my own and I am finding it tough going. My moods range from anger and frustration to despair and then determination to fight. I tell myself how much worse it must be for David who has to cope with the pain and the treatments and I am filled with love and compassion. He is a real fighter and has gained a lot of hope from some of the posts I have read out to him. So thank you, all of you.
Hi Chrissie
just to let you know you are entitled to Attendance Allowance plus Blue badge,you should get about £73 a week,this will help,get a care agency in or pay a friend to just come round and take some of the strain off you,this is so important,have a word with your children tell them you are not coping,may be one of them can just come up for the weekend,to take some of the strain off you.
When you are in this situation,sleep does not come easy the slightest movement from your husband has you awake in seconds,so your sleep is broken,try to cat nap,as Min says forget about housework,if it gets you down pay someone to come in to do it.
have you got all the equipment from the hospital to help you,frame,toilet seat, cushions ,wheelchair,commode ,if you have not apply for them you might only need them for a short time,but it makes all the difference,It does clutter the house up,but you can only do so much and it will make your life easier.
Slim soon learnt he was better using these things rather than decorating the carpet we now have wooden floors,and I no longer spend my time on my knees cleaning up. lol:-P
It will get better Chrissie,All the equipment went back and Slim only uses wheelchair when he feels he cannot walk any further,getting out and about is very important,staying in will not help either of you.:-D Eve
Good morning Eve,
Thank you for all your advice. We do get AL but it certainly isn't anywhere near £73, more like £50. I will look into that. We have a toilet adaptor and a special mattress for the bed. We are also in the process of getting a stair lift installed and we have a Blue Badge. I know exactly what you mean regarding 'decorating the carpet', I have been there. I have had the cloakroom floor changed to ceramic tiles for that very reason. Our kids are not local, one in Canada and one in London (we are in Warwickshire) and they are both boys!! Daughters-in-law are not like daughters!! The only help I have enlisted is a gardener as I can't cope with that any more.
Up until last week, David was not well enough to go anywhere as he developed a severe chest infection and ended up in hospital for 16 days,
which followed closely on a 3 week stay for his hip strengthening ops, but have now decided to try and get out to lunch at least once a week for his sake more than mine as I do get out to do the shopping etc.
I am really grateful to have found this site, so uplifting.
Good morning Bridget. I hope you are feeling well today? You certainly have been through a lot. I am most unfamiliar with all the medical terms.
What is induction chemo? I have worked out that BMB is to do with bone marrow samples! David was in an isolation ward for his last hospital stay as the doctors could not get to grips with the chest infection he had developed. So he spent 16 days within those same four walls!! He was nearly climbing them by the end. So, although life is difficult, I am grateful he is home again.
Surprise, surprise, we have had a call this week to say his potassium is high again and to put him back onto the lowering medication. I do not envy the doctors with the balancing act they have to perfect. They are wonderful.
Hi Chrissie My name is Sue its Michael my husband who is the MM patient. I know you must feel so helpless watching him suffer, I know I do, but things do get easier. New drugs are always a problem with side effects etc but once the treatment gets underway the side effects become easier to deal with. I know im not the patient but im sure alot would agree with me.
As for treatments not working, well some do and some dont everyone is different but im sure your hubby will find one that does.
Try to stay positive and deal with one day at a time
Much love to you both
Sue x
Thank you Sue! I am feeling a lot more positive since joining Myeloma UK.
I find the posts most encouraging and uplifting. People are so kind. To be honest, seeing David as he is now I was beginning to think he would never improve. Now I am full of hope. Once again, thank you, to everyone.
Hi Chrissie
Concerning the AL,you have to help you husband to get up in the middle of the night,and at his age needs to go more frequently ,you do not have much choice because he cannot afford to fall,if he brakes his hip you will not be able to manage him at home,if you do not get the full amount appeal.it will be back dated and his position concerning hips has added to his disability.
When needs must be,it does not matter,if its son or daughter,tell them you need help,if they do not rise to the occasion then at least you have tried.One of my son-in-laws made soup every morning and came in his lunch hour to ITU to make sure Slim ate wholesome food.
Sorry to sound so direct,its just they way I think and write,the pension people will always send someone out to help you or I believe Macmilan nurses are good.Slim still has the large blue cushions these help with comfort and ease to get up.
There is light at the end of the tunnel,just take it one day at a time.Eve
Hi Chrissie
Pleased you are feeling more positive 😀
Its a Long learning curve this road to remission am sorry to say:-S
Going back to your first post on this thread "How do you cope" ?? well we do we have to and you are learning like us all on how to cope better yep its hard to watch (i am the one with MM) I worry about how my young bride (Elaine) copes but she does and i also do its that or give up:-( and am pleased I went through all my treatment as I am now in remission and that I never had any doubt upon I knew I would beat it.
I still worry every time i do my bloods (cant stop the worry am afraid)
But am an Onwards and Upwards Guy like us all on here 😎
Good Luck on the road to remission it will be worth it 😀
Love
Tom "Onwards and Upwards" xxx
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