This topic contains 20 replies, has 11 voices, and was last updated by 
ann 13 years, 5 months ago.
Well as its 3am so technically a new day, I guess she was diagnosed wednesday and was admited yesterday. I drove 200 miles to be with her. She's in shock I think.
I keep thinking what am I supposed to do. Like manage everything. Then the other side of me thinks this is silly. Mum can't have cancer. Its ridiculous. She's fine.
I feel like I'm on robot mode.
Anyway she spent the day on a drip getting fluids and then treatment will start.
My concern, amongst others, is how far away she lives. I don't know if she should move closer to family or she'll be fine where she is. Maybe its too early to know that.
Also when and who to tell. On one hand its like tell people cause its cancer but on the other hand don't cause we don't know how sick she's gonna be.
Sorry to sound like this. I guess I'm still processing but thanks for listening
X
hi Jollyroger
Yep, your in shock mode,We have all been there.One minute they are fit next minute seriously ill.I kept telling people he,s so fit!!!!!thats my husband by the way,lovely man than he is:-)
Sorry about your mum,it is very early days,t would be stupid of me to tell you not to worry,one bit of advice I can give you is,start learning all you can about Myeloma the more you know the easier it is to make decisions.
Your mum will need a great deal of support,I do not think anybody can do this on there own,Also you might want to check out hospitals near you.Some hospitals offer Myeloma trials.
This is a good sight for help advice and support,good luck eve
Hi no wonder you are in shock it is devastating to get the diagnosis of cancer and it does take time to sink inBut during these early days of your mums treatment you will begin to come to terms with it as you get more info .Myeloma is a very individual cancer so your mum will probably have several tests and scans to see if there is evidence of bone damage and to measure how many cancerous cells are in her bone marrow This seems to take ages but it is a vital part of treament to get the best for your mum The issue of how your mum will manage is difficult for you but I will say that it is possible to live a normal life with myeloma , different but normal , Talk to your mum and also her specialist nurse to see what help may be avaiailable to support her. As for telling people again I woul ask your mum how she feels and who she wants to tell , she may need time to adjust first Try and take things a day at a time, there is a future for your mum, treatments are better than ever for myeloma now with lots of new drugs being developed all the time The support you will get from all the lovely people on here will get you through it There are sons daughters partners as well as patients Dont hesitate to ask you will get lots of answers from people with first hand experience Sometimes its good just to let off steam and this site is great for that as wellGood luck to your mum and if you feel able to it would be great to hear how she is getting on love Bridget x
I'm so sorry to hear about your mum. As the other have already said, you probably won't know for a while how this is going to affect her life and yours. I can't offer much advice on treatments and stuff cause I'm lucky enough to asymptomatic still. But I do have a mum (!) and I am the only one for her. She used to live very far away and I used to worry about getting an ulcer from all the stress of not being there for her cause she did have a way of getting herself in a pickle (not healthwise, but old house and not being able to look after it). I started pushing for her to move – it was not nice to have to say that she'd be better off near me rather than near friends. But it was the right thing to do. Shortly after she moved here, she started having health problems and had to have spine and hip surgery. Had she not lived near, I'm not sure she would have coped. I know my mum misses her old place and friends, but she also knows she is better off here and she gets to see me all the time and the kids. Plus she goes back to visit regularly. Her moving was the best for all of us.
Bella xxx
Hi Jollyroger
So sorry to hear about your Mum's MM 🙁 but you have picked the best site going, for up to date news, advice from great people that are going through have gone through what you and your Mum are.
Yes your Mum is going to need help as she goes through her treatment (the more the better)
At this early stage the best advice I could give is for you to look after yourself, its not selfish its a must.
Please ask away as the Q's come into your head.
Good Luck to you and your Mum
Love
Tom "Onwards and Upwards" xxx
Thank you guys. At night I feel worse. Can't sleep. I have a brother and sister but we all live at different corners of the country so none of us are close to mum.
I will stay on this site, read people stories and share.
This morning, the calcium count has lowered so already a step forward.
Hi Jr,
How old is your Mum and did they give a name to her Myeloma… i.e. Heavy chain or light chain? For instance if paraproteins were mentioned it will be heavy chain myeloma. What treatment have they mentioned… it is usually CDT (Cyclo, Dexamethasone and Thalidomide) but there has been a plethora of clinical trials that are proving to be an exciting divergence of possibilities and probabilities.
Welcome to our world although, truly, I wish you were not here… but as you are I have to say that this site and all who sail in her are all you will ever need to guide, help and support you and your family, especially your Mum (name?) as she travels our journey.
Dai.
I too am in some distress. My husband was diagnosed in February and what I find so difficult to come to terms with is the fact that he seems 100 times worse now than before he began his treatment. I am plagued with doubts. What would he have been like if he had never started the treatment?
He seems to have aged 10 years since diagnosis (he's 70) and halved in size. This is not surprising since he has no appetite and eats barely anything. He has been on CTD since February and is to change to Valcade next week. Is this a good sign or a bad sign?
I have been told that patients get worse before they begin to feel better. Is this true? Can anyone reassure me that patients do begin to feel better. He also has osteoporosis and kidney damage. He is in constant pain with his back, his hands shake so much I have to shave him, and he shuffles now, rather than walks. It is tearing me apart to see him suffer like this, I feel so helpless.
I would be grateful for any reassurance anyone can offer.
Hi Chrissie I can understand how hard it must be for you to watch your husband having to go through treatment and there is a time where yhings seem worse But this is usually because they need to hit the caner cells hard to get rid if as many as possible as quickly as possible If he is now going to have Velcade I would think they must be reasonably happy with his response to treatment so far and he may find Velcade easier than CDT Have you spoken to his specialist nurse about your worries? She or he would be the best person to talk to , they can help with better pain relief for a start Perhaps they could arrange for you both to meet a dietitian for help with his appettite , unfortunately CDT does affect appettite and taste so it is hard to enjoy eating sometimes There are supplement drinks and powders to add extra calories to his food though Small portions often throughout the day rather than a big meal can help , in fact I would suggest encourage him to eat anything he fancies even a deep fried mars bar if he wants!!You can phone the helpline on this site for advice too they are so knowledgeable and helpful and very willing to help Dont wait for your next appointment phone the nurse next week and you will feel more confident I am sure Good luck Bridget
Hello Chrissie
I think the treatment which is chemo is very agressive and can leave some people really down, ill and depressed once it starts to work you feel a whole lot better but it is a struggle at first as for the shakes i had terrible ones due to kidney damaged cause mainly by to much calcium in the blood they gave me chemicals to get it out of my system but if you have none or not enough calcium it makes you shake they took all mine out then gave me calcium tablets to build it up again as soon as they got the levels right i stopped shaking perhaps this is what is causing your husbands shakes good luck for your husbands treatment
Love Jo x
Hi Jollyroger and Chrissie
If its any help to you,I will tell you,I will tell you about my husband,
66 years of age fit and young looking,6ft 1 and 14 stone,4 cycle of ctd.now 5ft 8 and weights 9st 8lb.looks 20 years older.Had septic pnuemonia not pretty,but he is alive and improving every day although slowly.
It hard to cope with,I thought I was going to loose him,the people on this sight made me realise,I am not alone,a lot of them have been there before me,and are still here years later.So do not give up hope!!!
The one thing I will say,he should not be in pain,have your own doctor come out,it could be bone pain or infection,you do not say were it is?
You do not say if he is having Zometa Infusions for bone pain,this is a must.He should not be suffering pain
Eating and drinking is hard if you feel ill,bridget is right small amounts,see your doctor,get district nurse involved,my husband lived on eggs,scrabbled,boiled,any form,soaked them in butter and cream,only thing he could eat,7 up drinks is the latest he is putting on weight,and starting to feel better,some thing i thought would not happen,he told me he thought it was the end,
There is light at the end of the dark tunnel keep on this sight people will help you,do not be afraid to ask questions.
Ellain is a good source of information,she will talk to you on the phone or e mail her. best wishers eve
Hi
My mum, Ada, is 65. They haven't said what type she has but the first blood test showed high protein so it might be heavy chain. She just had her first dose of meds. 34 in one go!
She has been put on the myeloma XI trial and her meds are lenalidomide(revlimid) , cyclophoshmide and dexamenthasome (RCD).
Readiing chrissies post I'm scared that the next time I see her she won't be the mum I know 🙁
I suppose that will be when it finally sinks in.
Renée (not roger)
Hello Bridget,
Thank you for taking the time to contact me. The reason the treatment is being changed is because they are not happy with the amount of improvement there has been, they feel the light chain count should have come down a lot more than it has. Having said that, at least there has been some improvement which is encouraging for David. He has tried the Fortisp drinks but they make him vomit. He is to see the dietitian at his next appointment and is to have his back X-Rayed as that is where most of his pain is centred. The only time he is pain-free is when he is lying down in bed. He has tried Oramorph but that also makes him vomit. He is also subject to loss of balance from time to time and has had one bad fall. This makes me afraid to leave him for any length of time as I am so worried that he may break one of his brittle bones. Life is a bit of a struggle at the moment but we live in hope.
Hi Renee and Ada
I am not on any treatment at the moment (so that should make you feel better) but some one that is on the same stuff as your Mum will drop by and give tou some advice 😀
Please dont read Chrissie's post and think the same is for your Mum as we are all on differant treatment and react in differant ways..
Love to your Mum
Tom "Onwards and Upwards" xx
Hello Eve,
Thank you for your encouraging reply. It is so hard to see a loved one visibly shrinking before your eyes. David too was very fit, keen DIY'er, did all the jobs about the house and garden. To be reduced to the state he is in now is distressing him – he cannot even shave/shower/dress himself without my help, but he remains positive and determined to get well. He had a stroke two years ago and made a remarkable recovery from that, the only residual sign was a weak left hand. To now be saddled with MM as well seems so unfair.
He is on monthly Pamidronate infusions to strengthen his bones. He suffers mainly back ache.
He has been prescribed Oramorph but will not take it because it makes him vomit and causes constipation which he finds more distressing than the pain.
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