This topic contains 27 replies, has 17 voices, and was last updated by 
Sozo 12 years, 1 month ago.
Dear Antionette. My heartfelt thoughts to you especially in relation to you having such young children. Although i am older than you and my children are older than yours, i truly understand how you must be feeling right now. You know it does sometimes seem so unfair but the raw fact is that we cant change what we have. The only way I can deal with this is to try not to think too much about the bad side of the coin. There is light at the end of the tunnel and that is what i am trying to focus on. When i give in and cry i absolutely sob and if i dare to think of my children at that time it becomes hopeless. BUT then i feel like i can cope again. It is very intersting that u suffered with vertigo with your pregnancy as that is exactly what happened to me and i still suffer with vertigo to this day but nothing that troubles me much to be honest. I am in hospital as i type this message having my stem cell transplant. I came in on Tuesday and had Melphalan on Wednesday and my cells returned on Friday. None of which caused me any pain. So sorry have to sign off as my daughter is calling. Cant work out how to do 2 things at once on this phone. Xxx
Hi Antoinette,
My name is Nicki, I am 29 and my husband Sam is now 37.
Sam was diagnosed with Myeloma 2 years ago on the 17th of May 2010 at the grand old age of 35. We had been married for 10 weeks.
Although I am not the one suffering from this terrible disease, I can completely sympathise with how you must be feeling right now, cancer is not something you expect to be worrying about at this time in our lives. I feel like I have such a heavy burden on my shoulders and I resent friends that have relatively care free lives, however we are fortunate, Sam responded very well to his treatment (6 months of CTD and a Stem Cell transplant), and has only ever gone from strength to strength, BUT the fact of the matter is, Sam still has cancer, and it won't go, and I worry about how young I will be when I become a widow.
BUT despite all of that life goes on, it gets better, Myeloma doesn't occupy every waking thought anymore and we live life to the full, I won't lie about the fact that when Sam was diagnosed I was suicidal, I couldn't bear the thought of what was to come, but in the midst of all that a comment from my sister in law (of whom I get on with but wouldn't say I was close to) when all I could see was blackness still keeps me going at the worst times. She said to me "Nicki, you have to live your lives and not let this win, because if you don't, when Sam does die, whether it be in 2 or 20 years, you will regret it….". I try to make that my motto, and we live life to the fullest.
Two years ago, I thought my life was over, and maybe our old one was, but a new different one was just beginning, and I promise you, one day you will read this back and believe me when I say it is possible to be diagnosed with Myeloma and be happy again.
Much love and positive thoughts.
Nicki xxxx
Hi Antoinette
So sorry that you have had to join us all here, but I would also say that there isn't a better place to be.
Reading your post made me think back to when I was diagnosed in 2009. I was 34 with a 2 year old and a 4 year old and it really does turn your life upside down. I think it is natural to be teary and to feel out of control at the beginning….I reckon it took me 6 months to begin to come to terms with it all, but even now I have sad days and cross days about it all. And it sounds like, as I did, you feel you could cope better without worrying about the kids. I know that to this day, when I think about the kids, that is when I get saddest and most teary. They don't deserve to have to go through this journey with us.
BUT, if it helps, our kids have handled things brilliantly to date. We haven't told them the full extent of what myeloma means as they are still a bit too young, but we also don't lie to them. They know mummy is ill with it, they know every time I go to the hospital and that I will come back again. We told them in plenty of time that I was going to be away for a few weeks, but that it would mean that their Auntie would come and live with them for a few weeks. Yes, I think it makes them grow up a little faster, but they can also deal with it all better than we as adults can imagine.
LIke you, when I was first diagnosed I was smouldering. I just had low hb levels, and high calcium levels. THey waited until I showed some signs of bone pain and then went straight into treatment and I went on the Myeloma XI trial. I know it is easy to say, but try to make the most of the time you're not on treatment. I couldn't wait to start as I felt like I'd take the control back.
I always have diazepam now when I have a biopsy….oh yes, and gas and air if it is available….makes a HUGE difference 🙂
ANd the SCT isn't lovely, but it is like childbirth and you forget about it fairly fast!! But worry about that one down the line and after you've started treatment. I am 10months down the line now and nearly back to 100% which even 2 months ago I wasn't sure I'd ever get to.
Make sure you get onto the Under 50 site too if you can….if you go on it on here, and find the post by Scotty, if you let her know your email, she will invite you on….everyone is welcome but it is kept privateish to prevent spam and dodgy internet people!!!
Take care and I promise you that you will come to terms with it in time
Debs x
Hi Antoinette
Like the others say there is life beyond MM but there is a journey to go through. I was diagnosed in 2009 when I was 45. I was smouldering for 18 months then became anemic too, but with no other symptoms. I have gone through the chemo and stem cell transplant in Barts (who were amazing) and am now on the other side. Everyone is different and respond differently to treatment. I was in and out in 2weeks and really did not find it too difficult at all. They kept calling me boring 🙂 but I was happy with that. I had a line put in my neck which did not hurt at all to put in, have in or take out. Now I am thru it I am so glad they found it early. Stay in touch with us all. This is a wonderful site. Love Kay x
Hi Antoinette
I was 39 as well when I was diagnosed with MM. I am now 44 and feel strong and generally fine. I have had cdt, transplant etc and know that there are lots of current treatments and emerging ones available now that weren't there five years ago. I too had a child who was young, but now she is five years older than at diagnosis.
It's a shock to get diagnosed and it will take time to get your head around it. The best way to get the better of it is to focus on fighting it. As difficult as it is to stop feeling sad, guilty etc you need to try to keep positive and know that in a few years time even more treatments will be available.
Don't lose heart and focus on each day as it comes and before too long you will be looking back glad the treatment is over and appreciating the days to come.
Andrew
Hi sorry you have had to join this exclusive Myeloma club, I know when you get your diagnosis so young it is devastating and very worrying but the treatment for this disease is moving on so fast I am sure they will have a cure in the not too distant future.
The thought of the stem cell transplant is really frightening but actually its only like a blood transfusion instead of being fed into a vein in your arm they probably will insert a central line into your heart, but it is all fine dont worry, its worse than it sounds and once in place its so much easier and much less painful than nurses prodding you for veins.
I was diagnosed in Oct 2010 aged 49 and had my stem cell transplant in May 2011 but like child birth you forget about all the bad stuff over time.
I tried to take one step at a time and not worry about the next part of the treatment until the current treatment was over.
The worst bit I think is that I didnt want to worry my family as I was widowed at 46 and had a 18 year old son and 21 year old daughter – and so having the forum to vent all your anxieties to is good.
I have met a lady who has been in remission for 12 after her initial treatment and so I just tell myself I am going to be like her and hopefully so will you.
Have you got a specialist myeloma nurse – talk to him/her about your concerns or ring Myeloma Uk they are brilliant!!!!!
Take care
Caroline
Hi Antoinette,
Welcome to the forum, if not to its reason for existing. As you can see for yourself this is a very welcoming and supportive place to discuss your diagnosis and the treatments and procedures you will be following down the years.
According to the leading MM medics in the USA (where most new research, innovations and drugs begin) MM will be downgraded from a terminal to a chronic disease within the next 5 years. For this downgrade to take place the average, or median, survival rate must reach 10 years. There are a plethora of new medicines, both chemotherapies and major therapies, on trial at the moment that look like helping to achieve this median. Just over 7 years ago there were only 2 to 3 options available for MM patients… now there are several, with several more about to come online.
At the moment the drugs and procedures available to Uk patients are governed by a government body called NICE. NICE guarantee funding for the following order of treatments:
Frontline Treatment: (CDT… RCD & other variations etc).
SCT (Stem Cell Transplant)
Velcade
2nd SCT (if enough cells were harvested)
Revlimid
Variations of the above or 'trial' treatments
While the cost covering is welcome the above order does not always fit with the idea of MM being an 'individual' disease and the necessary flexibility can be problematic… although MM consultants seem to be very good at building flexibility into our treatment regimes.
But… the new drugs on trial at the moment will soon be licensed in the USA and normally reach us, & European Licenses approximately a year to 18 months after the USA.
As I see it (and this is very much a personal opinion) the pace and efficacy of the development of these new drugs will extend the median to its 10 year 'chronic' status within 5 years… and while the medics are loathe to talk about 'cures', I believe that something akin to a 'cure' will occur within the next 7 to 10 years. Of course, it may not be a cure in the accepted sense but a series of treatments that knock MM back, time and time again, suppressing the disease for a long, long time.
This is the hope and IMHO not a folorn hope. You are 39… you are young and fit… with a little good fortune & success with each of your treatments, you coulld be one of the new generation of MM patients who find themselves with a wide range of treatments available before and after Revlimid. The first of these new 'wonder' drugs looks like being 'Carfilzomib' which works in partnership with Revlimid and reports from trials suggest that it could extend, to the point of doubling, the efficacy and duration of the Revlimid treatment. At present the median for Revlimid is 30 months and growing (as reports come in from patients on Revlimid showing increases in the median due to the comparitive 'newness' of Revlimid).
I have met one person who is 12 years down the line and still going strong. My wife, Janet, and I met a woman at the Nottingham InfoDAY who had just passed her 6th year on Revlimid (started on a trial and carried on). These are the stories that give us all hope…. of course there are failures, of course there are no guarantees… but I truly believe that these 'hopes' will soon be commonplace experiences… and there is no reason to believe that you will not be in the forefront of this new generation.
Positivity, belief and sparing no time or thoughts on negativity should be your first aim. Positivity works… think positive and you will reap its rewards… think negative and that is what you will get… its the Law of Attraction and I for one believe in this law.
I wish you every success in your MM journey and all of us here will try to help you with any enquiries through our own experiences and knowledge… and if we don't know then we do know someone who does… Ellen and her wonderful team at Myeloma UK. 😎 Please take some time to fully explore this site and download the freely available INFOnotes… they are remarkably helpful.
Regards 🙂
Dai.
Hi! I was 43 when diagnosed, I am now 63 and still no sign of MM! Never had a problem with it since.
Hi Sozo
Thats a great story to hear, long may it continue:-)
Alison
Solo
I echo that, so so encouraging and long may it continue xx
Vicki and Colin x
Hi Anne
So sorry to hear your rotten news – I do understand how very distressed you must be feeling – especially in view of your young family.
I was diagnosed in 2005 and didn´t neet treatment for five years during which time they monitored me and helped with the anemia. I have had chemo and stem cell transplant during the last two years and am recovering well. None of it was anywhere as bad as I had imagined (honestly) and this website was a great help in preparing myself for what was involved and how to manage the practical side of things.
The new drugs are improving all the time and life expectancy too so please only read the POSITIVE and keep looking forward – that´s how you will beat it. When you feel down try to talk to people like the lovely ones on this site and your medical team who understand what you are going though as they have either been through it themselves or cared for someone who has.
A big hug and prayers for you and your family
Love Carol
Hi Antionette
I was diagnosed at 45 with MM I'm now 51> my kids were 7 and 12 at the time and it was devestating and scary. I've had my ups and downs i've had 2 stem cell transplants & a plasmacytoma in my head. I still work as a consultant and my kids/husband have learnt to live with it…
Try not to think too much into the future what if's etc – easier said than done I know (i'm terrible for doing it – and it is quite normal if you have lost that security of life).And especially around blood result days…
I always try a get councelling as it's my mind that plays havoc with me. You could try reading up on:
Mindfulness – its sort of about living and thinking in the present try this link to begin with http://www.cancernetwork.com/nurses/content/article/10165/1698208
EMDR this has been recommended by my company's Occ Health therapist http://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing
http://candacepert.com/
Someone has recommended I read this book by Candace Pert Molecules of Emotion – http://candacepert.com/
I find if I can keep my mind in order – I really can live a good life with my kids, family and friends and deal with the challenges this disease brings me.
I think of this statement often when things are tough and try to ride the waves to the next new realease of treatement.
"You can't stop the waves but you can learn to surf" Sri Swami Satchitananda
http://www.swamisatchidananda.org/docs2/home.htm
good luck
Dawn x
Hello Annie! We were all newly diagnosed once :-0 Mine was in October 1992, I began chemo immediately, had a stem cell auto transplant in March 1993 and haven't had a sign of MM since!:-D
Cheer up and believe. If I can help more just reply.
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