[Anonymous]

Hi, my name is Pauline. I am the very lucky wife of Marc, who was diagnosed in March this year. He is only 46 and that first day was one of shock, upset, confusion and anger all rolled into one. To make matters worse Marc was my carer as I have ms and am in a wheelchair. Now I am looking after Marc with the help of my 2 daughters 24 and 18.
He is currently on cycle 2 of a trial. We know after cycle 4 he will start bone marrow, but thats where we, re at now. Sorry if I go on a bit, but wanted to tell you all about my lovely husband Marc who I love too much to even think negative things right now.

[bandityogaParticipant]

Hi Pauline

Sorry to hear your hubby Marc has mm and so young. We all suffer from shock when our loved ones are firstly diagnosed. My husbnad is 57 and has been in hospital for seven months due to late diagnosis which consisted of a compressed spine. We learn to adapt and take each day as it comes. As Andy says each day is a gift.

Take care

Maureen

[Anonymous]

Hi, Thanks for the heartfelt response. For the 1st time I'm feeling that someone understands.Marc has always been the strong one….I'm the one that usually goes to pieces. I'm learning to sort out Marc's needs..medicine, dressing, etc. By the way he was my toyboy! Lol. I'm 10years older than him.Marc is very poorly with mm, is anybody newly diagnosed poorly too? He was diagnosed when he finally had an xray, blood tests and urine tests after getting worse over 3 months! He's gone from a very fit 46 to not being very mobile, constant back and left leg and hip pain. Also he has "blown up" not literally.lol! His stomach and legs are 4x bigger and his left leg feels like cement/lead he says, he can't move it or pick it up to climb stairs etc. Has anyone heard of these symptoms before? If you have please get in touch because when we go to the hospital patients nearly run and look very well! Marc says he's the only cancer patient that's not lost any hair yet and is getting fatter!
Take care and all our love to you and Andy

[meganjaneParticipant]

Hello Pauline and Marc,

I am so sorry you have had to join this forum but it is a wonderful place to ask questions and get support, everyone is very helpful and friendly.

My husband Phil was diagnosed with MM a year ago at the age of 43 and it was a shock. He started feeling unwell with back and rib pain in November 2011 and it took six months to get the correct diagnosis and by that time he had extensive bone damage so he was in a lot of pain, struggling to walk and climb stairs. At this time it was still his back and ribs that hurt the most but it turned out that his femurs were where the most damage was so he had two operations, one on both legs, to put a nail in the femurs to stabalise them. Phil had five months of treatment, six cycles of dex-dox-velcade and then he had a stem cell transplant in December and now five months on is getting better and stronger everyday. Phil still has bone pain but it is much better than it was and he is able to do most things again that he could before the MM just sometimes slower or more carefully.

Which trial is Marc on? Have the doctors checked for blood clots as this can cause swelling. The top of both of Phil's legs swelled up at one point during treatment but despite scans, x-rays and tests they never worked out why and it went away when he had the priming for the stem cell harvest.

It takes time and everyone responds differently but for Phil, one year on, he is feeling much better.

Megan

[tomParticipant]

Hi Pauline and Marc

Well a warm welcome to the forum, pull up a chair and get comfy, great folk on here that can and will help you both get through this.

Yes I got a bit "Blown up" when I first had my first line of treatment CTD then SCT all in December 09, and as of now doing great and Drug free 😀
Stay well

Tom Onwards and upwards xx

[Anonymous]

Hi Megan, Thanks for writing and putting my mind at rest.Marc is on Myeloma X1. He is 2 weeks into his 2nd cycle, and has been told he will be going into hospital for SCT after his 4th cycle. He had all the tests, scans etc on his legs and feet before going on the trial, and they don't know the cause. He has to have injections every day to prevent blood clots, and tests for DVT came back negative. I feel Marc was too left for too long. Every week going to the GP to be told they'll try stronger painkillers !?! It started in his lower back, then his left hip was painful too, then his ribs.When he had his MMR they found mm in his spine, left hip, left femur, and neck.Both of us are terrified ofhis SCT as we've not really been told anything other than he will be in quarantine for 6 weeks, the rest I've learned from the internet!
It is some comfort to hear Phil is much better after his SCT.
Thanks so much and all our love to you both.
Pauline and Marc. xx

[Anonymous]

Hi Tom,
Thank you taking the time to write to us. Marc is on clinical trial called myeloma X1, sounds like a football team.lol
His treatment is 4 cycles on RCD. Apparently it's the American version, CTD being the UK version. It's a lottery who gets which as a computer picks so it is entirely unbiased as to which treatment works. Personally as long as they help Marc and he's with me for a few more years I couldn't care which one! Lol
Glad to hear you are so well, it really gives me comfort and I don't feel so frightened so much.
All the best Tom.
Lots of love Pauline and Marc. xx

[sanParticipant]

Hello Pauline and Marc so sorry to hear your news it must be hard for you both as Marc was you carer, i found this forum so helpful, such lovely people and so much knowledge and support, as you read peoples stories you will learn and of course good advice is given, take care and i so hope that the treatment gets this myeloma under control really soon, San xx

[Anonymous]

Hi Sandra, Thanks for writing.

Marc too is on the RCD trial called Myeloma X1. We hope that your mum is responding well.

We are really touched that people we don't know yet have so readily accepted us. I know that the forum will be that area in our lives that will help with the problems, fears and illness and We know that all comments will be heartfelt and honest. I only came across this site during my endless hours on the internet trying to help make Marc's life better. I only wish I'd have found you all 10 weeks ago, when our lives suddenly turned upside down. How many tears and sleepless nights would have been lessened! Lol

Thank you to everyone who has taken the time to read our story. Lots of love
Pauline and Marc. xx

[VickiParticipant]

Hi Pauline and Marc,

Sorry to hear of your troubles….my partner Colin was diagnosed in October 2011, going on the m11 trial with rcd, after 7cycles went to zero pp and few light chains. He had an sct in October/nov 12. We have had our ups and downs…..Just when we think its ok he goes into a spiral of being absolutely exhausted etc. however the encouragement for you and Marc is that they got him to sct 🙂 and beyond.

When he was diagnosed Colin had a bit of back pain that got worse and worse….other than that he wasn't ill. Looking back though he lost an awful lot of weight which we put down to back pain and therefore reduced appetite! How wrong we were! Shock disbelief, complete fear…all the ones you've had. I don't think we have got over that, just learnt to live with it every day and find something to be thankful for on this journey!

This can be a lonely old road for sufferer or supported BUT this forum is a godsend, so are the mm team nurse, so kind helpful and knowledgable. Between us all we can do it 🙂

Best of luck

Vicki and Colin xx

[Anonymous]

Hi Vicki and Colin,

Thanks for your reply. Knowing people like Colin have got past SCT and are getting on is uplifting. Will definately beon the site all the time, you are all so lovely, you'll probably get sick of me before long! Lol

Now on lonely nights, when everyone is sound asleep, I know what to do! Lol

[tonyfParticipant]

Hiya Pauline and Mark, along with other forum followers, I would like to add my welcome to you. Not a place any of us want to be, but here we are, you will get a lot of support from here, lots of experience and knowledge.
For my part I was diagnosed in march 2012, I was lucky it was a very quick diagnosis, thanks to my persistent GP, I had no bone problems, lucky. Was put on Myeloma XI trials for 5 months, no further drugs then a stem cel transplant early February, not a pleasant experience, but you live with it and come out fighting at the end of it. Now a few months down the line I am in partial remission waiting for my next clinic appointment early June, wait and see what they say!
Best of luck to both of you.
Regards
Tony F

[Anonymous]

Thanks Tony,

I am overwhelmed with the reception we've got. So used to people trying to avoid us and quickly going back inside when they see Marc and I struggling to the car. Even my daughter-in-law said"don't know what to say Pauline."That was in a phone call I made the day we got the diagnosis! 10 weeks on still no phone call nothing at all! So at my darkest ebb I foundd you lovely people so thank you.
Pauline and Marc.xx

[HelenParticipant]

Hello Pauline and Marc
Welcome, my journey with this bunch began with the Myeloma xi trial in February 2011, I had RCD and SCT within 6 months and then had around 18 months remission. I've just recommenced treatment last week for relapse, but I'm good. Back to work tomorrow.
Hang on in there while you get used to the new life you have.
Love Helen

[bandityogaParticipant]

Hi Pauline

If you have any questions, you can phone the nurse on the myeloma sight who can answer all your queries. I would phone her about the swollen legs as it can be a blood clot even though Marc is getting injections.

It takes a lot of getting used to. My hubby Ian is still not walking as he had a damaged spine due to late diagnosis and had to have surgery. We do not know what mobility he will have. He is also my toy boy as he is 2.50 years younger than me. This is my second marriage and our 5th anniversary is on Thursday. We are going from the hospital to a restaurant. He is in rehab but is hampered by a bed sore which is taking ages to heal.

Ian had 4 cycles of CDT and his light chains fell from 4000 to 130 and he is no longer on chemo. We hope he will get a long remission.

It must be hard for you being in a wheelchair and having to look after Marc now.

Maureen

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