[jane-wrenchParticipant]

Hi there – I’m new to the forum – but sadly not new to myeloma! I was diagnosed with myeloma and amyloidosis in 1996 at the age of 45- but thought it might give you newly diagnosed people hope as I’m still here 18 years later! I’ve had 2 stem cell transplants, one gave me 5 yrs partial remission and the next gave me 10 years full remission – I’d almost forgotten I was ill at all! free light chains eventually started rising and I’ve been on velcade now since April 2012- first with cyclophosphamide and now with thalidomide – dragging on as I only have it fortnightly because of the peripheral neuropathy – but hopefully it won’t be much longer- my sons getting married in May and I’m determined to be fit for that! Got to try and get rid of some of the dexamethosone fat as well!

jane

[mhnevillParticipant]

Hi Jane

How good to hear your story I am sure it will encourage those facing SCTs especially those deciding whether to go for a second.

My story is encouraging too although nor so dramatic. I was first diagnosed three and a half years ago and am currently in full remission following CDT.

MM isn’t a good disease to have, but there is hope for which we must all be thankful.

I do hope you get fitter and lose weight for your son’s wedding! The latter is not easy this time of year!

Love.

Mavis x

[wifeofParticipant]

Hi Jane,

I am new to this forum as well as myeloma. My husband was diagnosed a month ago and it was a total shock. Reading your story has given me hope that there is life after his diagnosis.

[rebeccaRParticipant]

Hi Jane,

Thanks for posting it’s really great to hear your story and although I am sure your are an exception to the rule who’s to say anyone coming into this myloema world is not also a similar exception? Without hope life seems a little bleak. I have just had SCT and on a bit of a downer as all last year the focus/goal was to get to SCT and I never thought ahead of that but now it’s a bit of a “what happens next and has it worked? – will it have been worth it?” So all success stories -especially ones like yours – give me a huge boost in spirit and hope.
Thank you
Rebecca

[HarmonyParticipant]

Hi Jane,

So glad that you’re here and have responded to treatment. Your story gives me incredible hope. Enjoy the biggest glass of champagne ever at the wedding.xx

[coastiParticipant]

Hi Jane,

I’m a forum newbie too, just had my first SCT.  Interested that you had better result from your second transplant as I’ve been told to expect that a second one is normally half the remission length.

Laura

[TharewoodParticipant]

Hi Jane

Good to hear your story, I am in the process of getting my stem cells harvested this week and was beginning to wonder if I was doing the right thing. I am 49 and all I want to do is have some normality in my life and be strong for my husband and three children. My daughter got married in May 2013 and it was one of the happiest times of my life although we knew we had the dreaded M hanging over us. Thank you for telling your story as it’s just the boost I needed, stay strong & stay positive. I hope you have a fabulous time at your sons wedding and I’m sure you will look gorgeous x

[lezastarkeyParticipant]

What an inspirational you are. My husband was diagnosed with MM three weeks ago. He starts chemo on Friday. we have gone through a full range of emotions as the thought of what’s to come is very un nerving and scary tbh.

It is so reassuring to hear your experiences.

Thanks for sharing your story And have a fab time at the wedding

Leza

[jane-wrenchParticipant]

Hi coasti, yes it was a strange time the second time. In hindsight, I probably didn’t need the second SCT. I had had 5 years of partial remission and was very happy with it, no symptoms. But I developed a terrible pain in my shoulder which I thought was a trapped nerve but was referred back to Marsden who put me on carbamazepine – a nerve pain drug which had worked wonders before. Also MRI showed large mass which they thought was plasmacytoma so was measured up for radiotherapy. Meanwhile heap developed severe jaundice and had hepatitis tests etc and liver biopsies and sent for amyloid scans at NAC at royal free hospital. And worst of all, a biopsy of the mass which meant a neuro surgeon at another hospital as the only way in was through the top of the spine- scary place where every patient had shaved head and metal clips over their heads. I too went back to Marsden with line of clips down my neck. Jaundice was getting worse despite the royal free being certain no new amyloid so the Marsden decide to do the SCT anyway – and four weeks later when the jaundice was still bad, they decided on a tandem transplant straightaway to be done on Christmas Eve! My mother gate crashed the staff Xmas party to find my consultant to plead for me to have Xmas at home with my family – and he finally agreed with a view to the SCT on 27th December. Luckily on 27 my bilirubin had gone down slightly so they hung on – and eventually changed their minds as I improved, my liver didnt recover for months- a year with no wine! Terrible! And I think the jaundice was caused by the carbamazepine drug- and I never knew what had caused the pain! But the good that came out of it was over 10 years full remission – so it was worth it- although very scary at the time as I don’t think my body could have coped with the tandem! Sorry such a long story! Good luck to your husband – I’ve only just started posting on here but have been reading others posts and they are very helpful – and I ring the myeloma helpline with my problems and they are very good.

jane x

[jane-wrenchParticipant]

Hi again to you all and thanks for your comments.  I find there is always something on the horizon that I have to work towards and try to be ok for! As I’ve said my big goal at the moment is my sons wedding in may – in Slovenia! Where they fell in love apparently! But before I have to be fit for the hen weekend in Barcelona! Surrounded by young beautiful thin 30 something’s! So with that in mind, my small goal today – despite it being a dex day so I’m bloated with a huge red face, and haven’t slept a wink – am psyching myself up to get to the gym this morning and do the spin biking class – I know I’ll hate the first five minutes but I also know I will come out at the end buzzing and feeling life’s not so bad after all! Well – that’s the plan – hopefully I won’t come out on a stretcher!

[coastiParticipant]

Hi Jane,

Thanks for the update. Quite a scare you had last time, but as you say so long as it results in a good outcome it’s worth it.

Good luck, and thanks for sharing your long term living with this story !

Laura

[Ang287Participant]

Hi Jane
It’s so good to read a story like yours. I read it out to my husband Graham who had his 1st STC a month ago aged 56. After I read your story he said what are you smiling about. He won’t go on the forum but I read out all the positive things I see on it to him. Like you our daughter is getting married this year so he needs to get himself fit now to walk her down the aisle in September. He also hopes to play his guitar and sing for her first dance and I am really looking forward to that.
Enjoy your son’s wedding and hen do and good luck with your treatments in the future.
Angela

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