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Hi to all.
I'm zoe, a carer to my husband Dan who got diagnosed with myeloma only 3 weeks ago, he is only 29. I've heard so many good things about this website and at the moment feel so scared I need advice and support from those who know what we are going through. Dan only went to the doctors for what we thought was a cist on his forehead but xrays revealed that his skull had been ate away at by the cancer and 3 tumours present. They also found abnormalities in his chest xrays..we are still waiting for the mri scan results and bone marrow results to find what stage he is at.
He started chemo last monday, CTD and they are hoping to do a stem cell transplant in july. Its all going so quick, does it ever get any easier?
HI Zoe,
There are a great band of carers here… like buses you might have to wait awhile but then they will all turn up together.:-)
Right now you must feel like someone has pulled the carpet from under your world… the shock and coming to terms with MM must seem overwhelming… but it does start to ease as you find out about the medic's plans and Dan starts getting treatment.
My MM journey started with a tumour on my vertebrae that was touching my spinal cord… but I also had two quite substantial tumours on my head… the frontline treatment I received – CDT – soon saw them off and they have not returned, although they have left little craters in my skull.
Dan is very young and it is very unfair but there are a plethora of new treatments and drugs coming online now and over the next few years and hopefully Dan will stick around until MM truly earns its status as a chronic rather than terminal disease. I was first diagnosed with cancer in April 08 and the drugs and treatment regimes have changed dramatically since then… with trials and new drugs coming on board quickly… each a bit better than the last as far as I can see.
There is another young man who attends the same hospital as me (Nottingham) and he is currently in remission following his SCT (Stem Cell Transplant) as far as I know he has returned to work and the last time I saw him he was looking really fit and healthy.
Please don't despair. This is an excellent site – all you need, so please ignore the temptations of Google and the internet… most of that information is either clinical or out of date – its all here, both the medical information and the moral support.8-)
Stay as positive as you possibly can and don't let despair cross your doorstep.
Regards 🙂
Dai.
Hi Zoe…
It's tough isn't it?! Melvin, my partner is only 38, so young! How is Dan? He sounds like he is having a tough time of it.
Melvin was diagnosed with a solitary plasmacytoma of the spine in December 2011 and had radiotherapy that helped. He is currently in hospital with multiple fractures..now on the ribs…and is being hit full force with Multiple Myeloma. He has a clot on the lung and is receiving IV morphine and antibiotics. We are waiting to find out what treatment he has to have later today.
Have you had lots of information from the Dr's? Myeloma, is such a cruel and complex disease but fortunately there is lots of treatments available …so we have to stay focused and positive!
Keep in touch Zoe….always here if I can help x x x
Hi
Thanks for the replies, it means so much. I realise that we arent alone with this unfortunately and that others are suffering too, life can be so cruel. Thankyou to the both of you for your positivity. I'm so sorry to hear about how MM is affecting you both. Dans skull has started to strink and we are finding craters all over his head now, I dont know if that means the treatment is working, I really hope so.
Poor Melvin, at the moment Dan doesnt seem that bad in comparison; it must be awful watching him go through that, I really couldnt imagine.
Dai, we are trying not to be sucked into browsing about it, but its so tempting…there are so many questions. Dan has been looking up Tandem autologous and allogeneic stem cell transplants and is going to ask his doctor if theres a chance he could go ahead with this….just wondered if you have any advice about that?
Good luck for Melvins treatment Kaz I hope it all goes well, please keep in touch…i feel for everybody on here and wish them all the best.
Hi Zoe
So sorry you have had to join us especially as Dan is so young.
I like Dan like to read everything I can on MM. I find the Myelome Beacon (an American site) really helpful as they have threads to televised discussions between Drs on various approaches to treatment. In thsi country they aren't as keen on Allo transplants – I think because of the high risks, but even in America, because so many new treatments are coming on line, other approaches seem more attractive.
Has Frank asked about going on a Trial. This is one way of being involved in front line treatment, although having said that, many folk on here have had very good front line response to CDT.
I don't know about getting "easier", but you do get your head around ling with MM in time. Most of us take the line it isn't going to dominate our lives. I have learnt to make the most of good days – especially if the sun is shining!
All good wihes to you both.
Mavis
Hi Mavis, good to hear from you.
We have had a rough couple of days, Dans back pain is getting worse….is there anything stronger than morphine they can give him?
Yeah Dan is on the clinical trial but the treatment had to be choosen randomly and the standard CDT was drawn, we hope to get some of the trial treatment later on down the line. We have been keeping up-to-date with the Myeloma beacon and like you, we find it very helpful.
We had good news today which lifted some of the depression…We found out we are having our second child. I'm so scared to go through this while Dan is so ill and our daughter is only 2.
I really need help on how to help him, manage his pain, his tiredness and depression. I feel so lost without him.
Mavis, its so good to hear how positive you are, I hope we will share that way of thinking soon when the spring starts and we can go out more.
Regards
Zoe
Hi Zoe,
Sorry that you've had to find this site and that what should be the most exciting time of your life is being blighted by this disease. I am one of the under 50 gang having been diagnosed at 35 with two young children – that was four years ago. This is a tough journey but take it one day at a time, keep talking to each other and ask questions to your team so that you can make informed choices. The drugs can make you feel really rotten and do things that you would never dream of doing otherwise. Hope that you all get to enjoy the joy and hope that a new baby can bring. Pamela x
Hi Zoe – Im so sorry to hear your news. This site is a godsend and has helped me get through some difficult times especially in the beginning when I felt so alone and scared.
My husband Henry who is 53 was diagnosed in August 2011, he just felt tired all the time, thats all his symptoms were. He was on CDT for 6 cycles and has had his priming for SCT and goes into hospital in a couple of weeks for the SCT. Just remember its the medication that will make him feel ill, especially the steriods – make sure he drinks plenty of water and takes gentle exercise and doesnt over do it. You, yourself must try and rest when you can. ask family and friends to help. our children come over and cook at the weekends and help with housework which is a real treat for me to put my feet up.But most of all I just kept busy and still do as we arent out of the woods yet. Take care and keep smiling. love sarah x
Hi Zoe I am so sorry you and Dan are having to go through the nightmare that a diagnosis of myeloma brings especially as he is so young, I was 52 and still felt it was too young to have cancer It is a rollercoaster in the beginning because its all foreign even the words used sound strange but it will get easier I promise As Dans treatment gets going you will both get to know a lot more about his treatment and stuff in general If you feel everything is whizzing past you ask them to give you some time to make decisions a day or even a few hours wont hurt and it will help you feel more in control If Dan has a specialist nurse have a chat to him/her about your fears and any questions they are great and sometimes easier than doctors to talk to and they will be only to pleased to help.When I was diagnosed the scans and skeletal survey showed there was 90% bone damage throughout my body , although I have not had any tumours on my skull I have lots of craters, they call it pepper pot skull, which havent caused me any particular problems , so hopefully they will get rid of the tumours and he wont have any more problems Dan has the advantage of being young and probably fitter than someone older to help him beat this thing , try and keep that in mind. Do you have family or friends near you who can help? Sometimes just being able to sit and have a chat with someone can help a lot Take any offers of help that come your way to make life a bit easier too Ask if you can be referred to Macmillan for support too , they are brilliant and will able to give you good advice on claiming benefits if you need to and also Blue Badges for car parking if Dan finds getting around difficult For now Zoe try and take one day at a time , dont worry about what will happen down the line just yet you have so much on your plate so give yourself a break for now Hang in there Zoe it will get easier and we are all here for you when you need us , even if its just to get things off your chest( sometimes a good moan works wonders!!) Make sure you are looking after yourself too , get some rest and try and eat I know its hard when you are worried but you need to stay strong for both of you lots of love Bridget My e-mail is bridget.rochfort@btinternet.com if you ever want to ask me anything
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