[lynnemallaceParticipant]

Hi my name is Lynne and I was diagnosed with multiple myeloma on 5th July 2013 after being off work for 6 months with back pain and being treated for a trapped nerve. I am 44 years old and my daughter Jo is 11 and my partner is Stephen (Stevie). It was a shock to us all at first as I am so young but we are all being positive. I am taking part in the Myeloma X1 trail and I am on my second course of treatment. I will receive a stem cell transplant at the end. My side effects have not been too bad but then you don't really know what to expect. I am tired and have a red face lol but apart from that we are all coping quite well. I took an allergic reaction to Alluporinol (oops spelling) so no longer take that. I look forward to hearing from you xx

[maxParticipant]

good luk with the stem cell hope every thing goes ok we too has a family are struggling with my mums diagnosis oops me too cant pell

[tonyfParticipant]

Good evening Lynne, so sorry that you have had to join us, and so young! You will find lots of help and advice here. Sadly this wretched disease effects everyone differently, lets hope that your diagnosis was quick and early.
For my part, I was diagnosed in early 2012. Went on the myeloma drug trial, like you was allergic to allopurinol, so came off that. My treatment lasted for 5 sessions, then at my request, our daughter was getting married, I stopped all drugs for October, November and December, had a stem cell transplant in early February 2013. My paraprotien level has been at 1.8 since the transplant, othe levels are there or there abouts, I don't see the specialist until November and we are off abroad for the first time for two years.
Please stay positive, for your sake and for the family, I am sure you realise that there will be some tough times to come, but you can do it.
Good luck and keep us posted.
Regards
Tony F

[johnandjunediamondParticipant]

WELCOME LYNN,
you have youth and strength on your side girl so dont panic!
hoping the treatment gos well for you, j&j 🙂

[jmsmythParticipant]

Hi Lynne and welcome to the forum. As Tony says you are so young to get this bl**dy disease but you will get lots of support here and it's a great place to rant if you feel like it

My husband Frank was diagnosed in September 2006 and had SCT in March this year. It was no walk on the park but he got through it and no PP's detectable in blood and PET scan showed no cancer. So although each journey is different its doable and Frank is a LOT older than you. You have youth on your side

Good luck with your treatment and don't forget we are all here to help,if we can

Love Jean

[lynnemallaceParticipant]

Thanks everyone for your help and support. Its nice to have people to talk too 🙂 x

[eveParticipant]

Hi Lynne

Welcome ,the Myeloma trials are the best place to be,although you do not say if you are on CDT or CDR,good to hear you are Coping with little side effects,third cycle tends to hit home,keep watch on temp plus blood pressure ,plus your Dex moments.

Have you got booklets to help you if not ring Ellen or Maggie on free number,they will send you all the info you need ,keep notes on a day to day basis as you will see from it how it effects your moods plus help with the good times,plus bad.,its worth doing as it gives a guide to your general health,

Learn as much as you can,and try to remain positive,make the most of your life now,live every day as Andy says its a gift.Eve

[lynnemallaceParticipant]

Hi Eve I am on CDR treatment and will be starting the 3rd lot in around 3 weeks. Hope your good 🙂 xx

[VickiParticipant]

Hi Lynn

Welcome to the forum if you can call it that! My partner Colin was diagnosed in October 2011, he also took part in myeloma 11 trial, had an sct in November 2012 and is now on the road to recovery in full remission. Wasn't an easy road but worth the journey. He's left with a collapsed vertebrae which is causing pain but overall the mm is complete remission at the moment.

Ask away and best of luck with your treatment. Know how you felt with shock value…..don't think I've got over that yet!

Vicki and Colin x

[mhnevillParticipant]

Hi Lynne

Sorry to have to welcome you to this Site, but I am sure you will find lots of help and support here like I have done.

Sorry you have joined us so young, but I am always inspired by Kathy Giusti founder of MM Research Foundation. She was diagnosed, in the 90s, at 37 when her daughter was only one. She was told to expect three to five years. Having a background in pharmaceuticals she determined to improve the odds. She is still going strong after various treatments and the Foundation has raised nearly a quarter of a million dollars and funded research that has led to four of the new treatments.

There is life after MM. Keep strong.

Love Mavis x

[JollyParticipant]

hi Lynn, your bus seems to be on a similar route to mine…. I was diagnosed in May, completely out of the blue and was called at work by my GP, like everyone else the shock was immense but like the saying goes you get the strength from somewhere dont you. I am 46 with 2 daughters 19 and 14 and my partner and I have decided to get married next July and a celebration is on the cards!! are we mad ??
I have been selected like you for the myeloma 11 trial and was randomised for the trial … the biggest test for me has been steroids ! They are now being tapered but are still the worst part for me however needs must,I totally empathise with red faces flushes and nite sweats !!
I was also allergic to the allupurinol after cycle 2 and taken off it , I am nerly finished cycle 5 my paraprotein has gone from 51 to 20 and seems to have now plateued and am now moving to transplant which will start 21 Oct …. reality has set in for me now and I am scared but know I have to do this and there is so much support and help on this site from lots of lovely people, thank you x

[lynnemallaceParticipant]

Hi Jolly. Good to hear from you. I am now on Cycle 3 of the myeloma X1 trial and doing well. Paraprotein has dropped from 28 to 7 which is good news and I see your paraprotein was higher but dropped to a good level :-). Good news about transplant and I hope all goes well in October. Keep me posted as to how you get on after all we are similar ages and soooooo young for this disease. Where do you live about? I am attending the Western General Hospital in Edinburgh, Scotland. Take Care and kind regards Lynne x

[JollyParticipant]

Hi lynn i am at western too!! Who is yr consultant?

[lynnemallaceParticipant]

Jolly, I have chopped and changed consultants but my main one has been Dr Jenny Buxton. Last time I went to Western I saw a registrar Dr Darias (not sure of spelling lol ) .I also attend St John's, Livingston for my zometa infusion once a month. My partner also said when I'm better the first thing we're doing is getting married. . Hope your well. Love Lynne xx

[Author]

Posts