This topic contains 11 replies, has 8 voices, and was last updated by 
bandityoga 11 years, 10 months ago.
Hi,
I am Stewart and 45, was diagnosed in September 2 days before my lovely daughter Elsie was due. Been a wee bit of a rollercoater, there's a lot to learn about MM. Even the acronims are taking me some time. I initially tried eating and drinking the myeloma to death, it was great fun but just got me fatter. Am parking that! I am on trial XI CDT just entering my 3rd cycle, hope to go onto my SCT in the new year. I have found the threads very informative, thanks to all who have contributed. I will have loads of questions as I progress down my own road and plan to keep in touch with those walking beside me. I do want feedback from carers at the moment as my wife, Vanessa, is definitely struggling with it all, not managing to really talk or vent her anger fully with me. Never been a problem before! I think, on advice from a couple of you she will join the forum as well as contacting the myeloma nurses. She needs a good scream and cry.
For those just diagnosed, it is life changing. Enjoy the small things, watched the new James Bond movie while mother in law looked after Elsie. 3 hours of escapism and normality. I recommend it. My paraprotien level was 64 on diagnosis. Quite high. Chemo working well, down to only 41. Ha ha.
I appreciate the intensity and serious nature of what's occurring, particularly with a young wife and child, but I do want to support and be supported on our journey and hope to join you all for a good while yet, in hopefully a positive fashion.
Keep well, Stewart
Hi Stuart and Vanessa
A Warm welcome to the site.
I am Tom had CDT and SCT in Decenber 09 am now in remission and Drug free am pleased to say.
Good Luck on your road to remission as its a hard one some days but stick with it and stay strong you will soon be my side of it and it feels great 😎
Ask away and this is the place to vent out as we have all done it.
Love to you Both Tom "Onwards and Upwards"
ps where are you getting your treatment ? might be one or two at same place 🙂
Hi Stewart
I finished my six cycles of CDT on nov 7 th, pp down from 42 to 3 , so a good result for me , also little or no side effects from all the poison I swallowed
Steroids my me hyper & very hungery, mind you I always eat too much,settled on a curry & carrot cake diet, no surprise that I put on 1.5 stone , fattening up for SCT
You & your wife should go to your local group meetings, there will be carers & MM sufferers there, also info days are excellent for info & meeting fellow travellers
You both need to totally focus on positive thoughts/ actions to get the MM kicked into remission,
i work part time , which I enjoy & it keeps me occupied , we also try to go out & do something every day, I think sitting around feeling sorry for yourself is fatal
UK MM site has loads of info on a whole range of subjects, also the American site
I was at Christies yesterday , hopefully if tests on my unfit body are ok i will start SCT dec 5th, then turkey leg in hospital !
Tom has the right attitude, not much hair but the right attitude, soon i will have even less hair !
All the best
Peter
Welcome Stewart, You will find all you seek and more on this site, some real nice people and good sound advice. The one thing to bear in mind is that Myeloma is a very individual decease so whilst we are all going down the same road it is a very broad road.
Kindest regards ? vasbyte
David
Hello Stewart (& all!), hope you're having a good day.
My father is going down a very similar road to you, despite me being 21 & having a 19 yr old bother. He was diagnosed in April after recovering from double pneumonia & having severe back pain for months, at this point he was in kidney failure and it was big shock. Things were not looking good but he responded well to initial thalimide treatment, this was then complicatied by nerve damage and he was given Revlimid. This is working well, his pps have dropped to 20. Unfortunately they seem to have plateaued but his oncologist is still eager to go ahead with the SCT in Jan, following another cycle & a bone marrow biopsy the day after Boxing Day.
I hope I can somehow be of help along your journey. Remember as a 'young one' you will be stronger than expected, as long as you look after yourself! 😀 I met an older women the other day who had to been living with myeloma for 12 years, and treatment is constantly improving.
You can never be sure what is round the corner so be positive, and remember what is important.
Take care, Katie.
**(forgot to mention he is also 45)
Stewart and vanessa,
Hello, sorry to hear your diagnosis. My partner Colin was diagnosed October 2011 and had his SCT beginning 29/10/12. He was discharged Tuesday but he had a little infection blip so we had to go back in Tuesday night. He's probably coming home to tomorrow.
He was on the myeloma 11 trial, having cycles of cyclophosmahide, dexamthazone, and revlimid. He responded well to that and hence where we are. For the supporter (me). I did not know whether I was coming or going, distraught, pretending to be in control, angry, upset, needing to be in control to make it right, helpless etc such a range of emotions!
I would urge Vanessa to join this forum, or at very least make sure she has a few people to talk to about her worries, concerns, frustrations etc. It was hard talking to Colin sometimes as I didn't want to let him be worried about me, or even feel guilty about being Ill (he said he felt guilty once!). Happy to help whereever I can. Life is different but it doesn't mean it can't be quality 🙂 best of luck on your journey
Vicki and Colin x
Hi Stewart
I was diagnosed age 56 at the begining of August this year & like you opted for the Xl trial & was randomised for CDT. Just started cycle 5 & m protein now down from 43 to 11, so its good to see you progressing so well too 🙂 It is very hard on wives, husbands, partners & families, but there is endless support from really nice people on here and I hope that like me, you too will find that a huge bonus. Your lovely daughter Elsie will no doubt give you lots of encouragement & joy too 🙂 Like you say, it certainly is life changing, but like Vicki said it doesnt mean it can't be quality, so do be sure to remember that on the not so good days & keep your positivity flowing.
All the best
Ange
Hi Stewart
My husband was daignosed in October at the age of 56 with MM. It has been a great shock to us. I cried continually for the fiorst 3 weeks. The doctors has given me vallium which I take when I need it. I stay strong when I visit my husband in hospital.
Do you live in Scotland as you are a hearts fan.
Maureen
Hi Maureen,
Sorry to hear of the diagnosis. I am still coming to temrs with it but seem to be getting there. The treatment I have had in the Western General in Edinburgh can only be described as first class. Ask lots of questions of your consultant, they are only too happy to help. And try not to get down too much – there is always a positive to be taken. Hopefully a good reaction to tratment will buy a reasonable remission period. I am only finishing my 4th cycle of the Myeloma XI trial and hope the stem cell will go ahead in spring. I'll see how that goes. There will be a few bumps along the way – I'm just out from a week in hospital after collapsing last week. Turns out clots on both lungs and a little pneumonia can be common side effects of treatment. Actually, worst part was one of the other patients was then diagnosed with flu and they put the remaining 3 of us in isolation. My Christmas party was dry in the company of two octogenarians. Wild!
Vanessa still finds it hard, particularly when I collapse, but is definitely beginning to see up sides. Enjoy all the good moments and try not to focus on the down sides too much. There are many people getting years of remission now, that's got to be the target.
Try to enjoy Christmas and take every day, good or bad, as it comes. There will, surprisingly, be a lots of good ones. And if you want to kick off just do it, it does make you feel so much better after. I live in Edinburgh and follow Hearts, I have enough down sides from that to keep me going so it's positive stuff for Vanessa, Elsie and I. And you too!
Good luck in the journey.
Hi Stewart, I have heard much about self inflicted pain but following Hearts, my God, that is above the call of duty. Well done You, Myeloma will hold no fears for you then 😉 😀 😀
Kindest regards – vasbyte
David
Hi Stewart
Venessa can contact me if she wishes. I too am struggling to come to terms with Ian's MM. The doctor has prescribed diazapan for me and I take it when I need it. It makes me feel calmer but I also believe that god will look after us. What age is Elsie?
I had a down day today, shopping in the supermarket, a nightmare. What do people buy as the shops are only closed one day.
Ian's wound is healing as he is eating better but we have to wait and see what his blood test showed regarding the myeloma. If it is still stable the velcade will be delayed a little longer to let the wound heal more.
I make hime home made soup and take it into the hospital, he also enjoyed a custard slice and he loves cheese.
We are taking each step at a time and I can't wait until he comes home, either in a wheel chair or walking. This is my second marriage and lthough we met 9 years ago, we have only been married for 4 years passed in May.
I don't work at the moment as I have a sick line from work, but usually I work 3 days a week and have been with the same compnay for 16 years so they are very sympathetic. One of the engineers is also a Hearts fan and he gets a lot of ribbing. Ian support Dunfermline for his sins but they are doing well so far.
Christmas will be a very hard time as we will be apart but I will visit him in the morning ton open our presents and he is allowed a glass of champagne.
Hope you keep well and have a good Christmas.
Maureen
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