This topic contains 24 replies, has 12 voices, and was last updated by 
mhnevill 13 years, 11 months ago.
Hi Folks, just coming on to introduce myself and need help as I am at my wits end right now. My dad, who is 73 has had months of not being able to keep food down and going off his leg, etc. About a week before Xmas he went to his GPs for a routine blood test and was rushed into hospital the next day. After being in A&E for quite some time he was moved to the renal ward. We were told that his kidneys had stopped working and that they needed to find out why as his body was full of toxins. On Xmas eve we were called into the hospital and were told that he had a type of cancer called Myeloma. It was a terrible shock to us and I admit that I had never heard of it. They also axplained to dad what he had and asked him if he would take part in a clinical trial called EuLite. This involved two weeks of 8 hours dialysis and chemo a day for two weeks and 8 hours dialysis a day for one week. They called this one "cycle". They said that they may be able, with two cycles to get the myeloma into remission. However, dad really struggled after four days of this treatment and said that his legs had stopped working and that he felt as if his insides were being pulled out every time he had dialysis. He came off the trial earlier this week, and, after initially refusing all treatment, has agreed to have three lots of dialysis a week. Last night we went to see him and the nurses took us to one side and said that she thought it was best to send him home while he still had some quality of life but she also suggested that we contact the Mcmillan nurses. I was expecting this much later and am totally at my wits end right now on what to do for the best.She also said that she is questioning chemo as they normally just give steroids? Help!
I forgot to say, my dad seems to have good days and bad days. He's struggling with breathlessness and the versions we've had so far is:-
1. it might be a chest infection
2. in Myeloma your blood is very think and he may have blood clots on his lungs (he was having a scan this morning for these).
Do the hospitals give up on you if you get this over 70? The family feels as if the hospital have given up on him since dad told them that he wanted to come off the clinical trial. Any advice would be much appreciated.
Hi Jenny,
Im sorry to hear about your dad, my dad was diagnosed yesterday from a bone marrow biopsy,i feel the same as yourself, shocked and numb.
Just wondering if your dad has decided to come of the clinical trial, is there any chance your dad would agree to have a social worker involved and maybe trying talking him into it or explore any other options?
Hi Jenny,
I am very sorry to have to welcome you to our little group. You have come to the right place though, you will find all the information you could wish for on this site and there is a MyelomaUK Nurse on the other end of a telephone to talk to if you so wish.
I regret to say that 70 does, from my experience only and I am 68, seem to be the cut off point for some Myeloma Treatment. The reason I was given, which I think is perfectly reasonable, is that when you are over 70 you simply cannot take the toxic drugs required to control Myeloma; as your Dad has already found out I think. I also think there is an element of "is it worth it" involved as well, the drugs used are prohibitively expensive.
My advice would be to give the Myeloma nurse a ring and discuss your Dad's case with her.
kindest regards
David
Hi Jenny,
Very sorry to hear about your Dad. However, it is not quite true that there is no treatment after 70. My Mum was 79 when diagnosed and although she had not been as poorly as your Dad seems to have been beforehand she went through nine months of chemotherapy treatment (by tablet). This was very successful in getting the Myeloma into remission. It does sound like the problem may be with your Dad's kidney function as if this is not good I think it would be very difficult to cope with the toxic chemo drugs. As David suggests I think you would find it very helpful to talk to the Myeloma UK nurse (via this website) as they will be able to explain more about the treatment options.
Good luck, Jill
Hi Jenny
So Sorry to welcome you into this fine band of MMers.
Sorry I cant add to the Age limit as am sure it will be on a health issue IE Is Dad fit and healthy to take the regime of drugs?
Hope you get the correct answers and it helps
Good Luck
Tom xxx
Hi folks, thank you so much for your kind words. It's really helped me to know that we are not on our own. We visited dad this afternoon and he was much "chirpier". We are at a dog show tomorrow and I have had my orders that we have to bring him a rosette back!
We have had a good talk to the nurse in charge of his care and also one of the doctors. He says that dad will be having one lot of chemo a month and steroids two days before chemo and two days after. Dad will also continue on the dialysis three times a week. He also has some fluid on board, not in his lungs but surrounding them which adds to his breathlessness. The scan this morning cofirmed no blood clots (much to our relief).
Our major problem now is his homecoming. My stepmum is 79 and is bad on her legs herself. She has said that she doesn't want him home but wants him to go into a home. The hospital said this afternoon that he is nowhere near the stage for palliative care, in their opinion, can lead a full life before things "move on". They have suggested that, with their help, we sort out care four times a day for him when he comes home. However, my stepmum had a scare on New Years eve when he was allowed home. His body swelled, his face looked as if he had been in a boxing match and he was very breathless. I have offered to do nights once he is home but she has said that that is irrelevant as we would wake her anyway. I just don't know what to do. I just don't want my dad to go into a home where he would probably give up anyway.
Hi Jenny
Your poor dad is going through the mill. Im sorry he is having so many problems but hopefully they will get his kidneys responding to treatment and the fear for your step mum will go when she realises he is responding to there care.
I would say don't let him go home until he is responding well or he will be back again before you know it.
I am amazed that they had put him on a clinical trial when he was so poorly, rather than tried and tested treatment.
I agree that the Macmillan nurses can be a godsend. When our Macmillan nurse knocked on the door I was convinced that Peter was doomed. I was soooo wrong she was amazing at organising his care programme and for getting things done.
Swelling is normal with kidney damage, peter has it and with the correct amount of water tablets it can be controlled, diets have to be changed to exclude as much salt as possible. My husband had fluid up to his chest and in the space surrounding his lungs; it will go once the treatment starts to work and with the correct tablets to reduce it. Make sure he has a full care package before he goes home and he will get back on his feet eventually.
Understand that dealing with this disease is a marathon not a sprint. Nothing happens fast, it all takes time and requires an awful lot of Patience
Best wishes to your dad and hope he remains chirpy
Min
Hi Jenny
Am Pleased to read your Dad is Chirpier today 😀 that can only be a good sign 😎
As for your Dad getting to come home am sure before he is allowed home some form of "Homecare" will be put in place as your stepmum is in her late 70s.
I know your Dad will be better the longer he stays out of a home, and as they say Dad is no where near the need for "Pallative Care" am sure you all will get the help you need for your Dad at home.
Love
Tom xxx
Hi Jenny
Hello and welcome, My Mum has Myeloma and was diagnosed in July 09, she has had a really rough time, but is reasonably well at the moment. I am sorry to hear about the problems that you are having, I can see it from both sides of your family Yours and wanting Your Dad home, and also your Stepmum, She will be feeling very frightened and will need a lot of support, I agree that the best place for your Dad is to be at home, less exposure to illnesses, that can be caught in any nursing environment. The hospital will be able to put in a very good support network for her and your Dad (whereabouts do you live? different services offer different things throughout the country) they can not reasonably expect Your Stepmum to manage if she is unwell herself, so a large care package and maybe nightsitting service would be appropriate but that all depends on where you live and what your area offers. Have you spoken to Macmillan or Marie Curie Nurses, they can be very helpful too? Good luck with everything and love to all. Let us know how you get on.
with love michelle x x
Hi Jenny
I am pleased that your dad feels a little better. I do agree that a care package would help a great deal when your dad goes home but I can understand how fearful your step-mum is.
When Stephen was due to come home after his SCT I wanted to beg the hospital to keep him in. I was terrified that he might get an infection or I would give him the wrong thing to eat (it was afterwards that I remembered I had stopped him eating anything in hospital becaus they were giving him stuff he was not supposed to have and I had supplied his food from the start!!)
Good luck to you all Gillxx
Hi Jenny,
Glad to hear that your Dad is feeling a little better and that you are clearer on his treatment. I completely understand your worries about care but agree that he will be much better off staying at home. Not sure where you are located but if there is a hospice service near you this could also be very helpful as they can provide support at home and also day and respite care. The local district nurse or the Macmillian nurses can refer you to this type of facility if there is one. I used to think a hospice was just for people who were near to dying but since Mum was diagnosed I have discovered that our local hospice is a fantastic place, full of support, information and comfort for both of us.
All the best, Jill
Hi, I'm sorry to hear about your dad, and glad he is feeling a little better. My mum is 71 and nearly in her 2nd yr of having mm. She has had chemo treatment and is now on monitoring bloods, she is doing ok. I was told that she wont be given stem cell treatment because of her age and there are only certain treatments she can have. Her paraproteins are slowly rising but because her other bloods are ok they are reluctant to treat. You never know if its because of her age or the way they do things. i hope your dad gets the right treatment.
Take care
Gina x
You are all wonderful and a great comfort to me knowing that we aren't on our own. One of my elder sisters and my partner visited dad this afternoon while I was away at the dog show. He was in great spirits again and was just having an extra two hours dialysis. I think that they are trying to get more fluid off him. We now have had two good days so I hope I aren't speaking too soon when I say that there seems to be a light at the end of the tunnel.
Gina, you have especially helped me telling me about your mum. I thought that we had days left with dad and you have given me hope saying that your mum is in her second year. I know that every case is different but it does help me to have hope.
My main concern now is about dad leaving the hospital. I really don't want him to go into a home but accept that my stepmum is worried about what might happen. I now know that we need to introduce ourselves to the McMillan nurses but am scared stiff of "treading on my stepmums toes". When dad was first diagnosed the haematologist gave us some leaflets re the Myeloma which my stepmum snatched and took home. I asked my dad to ask her if I could have a look at them but she still hasn't allowed us too. When sister and partner visited this afternoon there was a DVD on dads table called "coping with kidney failure". My sister asked what it was and my stepmum snatched it off her and put it in her bag saying "that's for me, not you". It's really hard to stay calm. I accept that my stepmum may see the "looking after dad" situation as up to her but we really love our dad and want to help all we can. I really feel at the moment as if he will be in a home without the family having a say at all. It's such a difficult situation and we really want what's best for dad.
Jenny
The booklets you would like to see can be found and downloaded they are to left of this page near to the top under the Title 'Myeloma Library' Hope this will help you to understand better.
Min
The topic ‘dad diagnosed on Xmas eve’ is closed to new replies.
