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Hi, my Husband was diagnosed in May, came as a complete shock,he’d not been right for some months and was ridiculously tired all the time, various aches and pains but nothing too major and still doing a manual job, then had shingles and just didn’t really recover so back to gp who arranged blood test, done at 4.00pm and at 9.30pm had call from out of hours doctor and told to go straight to a&e as calcium levels and creatinine were both extremely high. He was admitted and this horrible journey began. Opted for myeloma xi trial and allocated ccrd, after five cycles which he tolerated really well protein levels were down from 62 at diagnosis to undetectable so a brilliant response. A few hiccups along the way of course but now starting build up for sct on 9th February. I just wanted to say that this forum has been invaluable to us, reading how other people have coped and fared has helped me to feel so much more optimistic about the future and I have been able to reassure Pete to that end as well, so thank you all for sharing your experiences. Going to UCLH for transplant so would be interested to hear of anyone’s experience there.
Karen
Hi Karen
I was diagnosed with MM back in May 2011 and after 6 cycles of CTD had a SCT in Poole Hospital in February 2012. After a few months I was completely back to normal and have been in a very good partial remission and then a complete remission ever since. I haven’t looked back and live life to the full. I’ve been totally drug-free for over two years and only see my specialist every 6 months.
The message I’m trying to get over to you and your husband is that a MM diagnosis isn’t the end of the world and there’s plenty to look forward to after a SCT.
Like me, your husband has obviously responded very well to his initial treatment and I hope he sails through his SCT too and starts planning his future again.
Very best wishes to you both. :))
Hello Karen,
I was diagnosed in 2006 at 48. I had CDT followed by a SCT. This gave me a full remission. This lasted just over 5 years and during that time I was only taking Clodronate. It reappeared in 2012. I had another course of CDT followed by another SCT. This again resulted in full remission. Since then I have not been on any medication at all. I also now have 6 monthly blood tests and consultations. I still do most of the things I want to do and have not let it interfere with my life as far as possible.
Best wishes to you and Pete.
Kevin
Hi Karen
I have had a stem cell transplant, unfortunately my kidneys failed during transplant so I’m on dialysis. That happened in 2012. My advice would be to drink plenty of water during transplant and use corsodyl as your mouth wash they won’t supply they give a cheaper version.
I not going to lie to you it’s a tough journey but there is plenty of life after the transplant.
Ivan
Hi Ivan, At what gfr was you prior to transplant please – was it a known big risk with your kidneys to transplant? I have low kidney function and they were not affected by the transplant but always like to gain information in the event of future treatment. Thanks
Rebecca
Pete’s aim is to get back to work,says he’s not ready for retirement! It’s good to hear that life goes on with myeloma, right from the beginning we’ve been determinably optimistic that all will go well but I can’ t help the occasional ‘what if ‘ moment but try not to let this show, sometimes that’s the hardest part. Still as someone says somewhere on these forums I’ve adopted the onwards and upwards slogan it seems to fit the bill.
Karen
Hi
Im Sarah,I’m 57 years old and was diagnosed with myeloma last Friday . I’m still feeling shocked and have started to feel scared about what lies ahead for me . My four children and some of my close friends are aware of the diagnoses but until I know more ,I haven’t told the rest of my family . I feel guilty about upsetting them,is this a normal reaction ? I really don’t know how to feel or behave at the moment . My children are all very supportive but upset too and my husband is bewildered and angry . I’m having a skeletal Survey done tomorrow and then they will decide how they will treat me . This was picked up from a routine blood test so I’m not showing any symptoms at the moment apart from some backache which may or may not be caused by the myeloma . I had pneumonia at the end of March last year and àlthough I picked up well afterwards ,I seemed to go back downhill and have been lacking energy since . I suffer badly with osteoarthritis so it is possible that myeloma pain has been mistaken for that ? I’m quite immobile sadly . How did you all feel at first diagnoses ? How has the treatment affected you and your families ? Would be good to hear from people who already have myeloma .
Sarah x
hello sarah. wellcome to the website none of us really want to be on but are my name is Ann diagnosed jan 2014 symptoms masked a bit by my ruemotoid arthritis back ache which was broken vertebras l treatment started after bone marrow byopsie and mri scan six months of chemo which was three diffrent types of drugs taken at home in thre weekly cycles then a stem cell transplant in the freeman hospital newcastle it is hard but i felt worth it i have been in remission for sixteen months. and yes like yourself the shock was awfull my family. were devestated but weve come through. we take each day as it comes and we are doing well. you will get through this xxx
Hello Sarah
I was diagnosed in May 2011 when I was 49. It was totally out of the blue and I can still remember the first days afterwards spent in shock, despair and yes, fear. My brain seemed to scramble and I couldn’t think logically at all. I just kept thinking “I’m going to die”.
If you can relate to this, please let me assure you that with myeloma this is not the case and when I look back, my panic was just plain silly!
I dealt with it all by accepting that I had MM and that treatment was the first port of call on my road to remission and a good long future.
Break your initial treatment into segments and just take one step at a time.
You’re in safe hands with the folk on Myeloma UK and there’ll always be somebody to help you.
Stay in touch and let us know how you get on.
Best Wishes. : ))
Hello Ann nice to meet you,I’m so glad you’ve come through everything alright and have been in remission for a while,long may it continue 😊 . I just hope I do as well. I have my skeletal survey this afternoon so will know next week if and when I will start treatment . My Paraprotein level is quite high at 28 but everything else is normal so hopefully not much damage done .Hope you continue to keep well Ann xxxx
Hi Michelle,nice to meet you too,I think you have just described exactly how I’m feeling at the moment . At least I’m not alone 😊 .I was told I may have Myeloma 5 days before Christmas ,had a bone marrow biopsy on 29th December and then was told I did have myeloma last Friday ,so I’ve spent the last month worrying and like you say,now thinking I’m going to die 😢 .Hopefully I will improve when I start treatment .Thankyou for your kind words xxx
hy again. sarah. one more thing i meant to say. dont look to far down the treatment line do it in segments hopefully. your consultants will get you on a course of treatment to reduce your paraprotien levels make that your first mission then look to whats next most people on this forum have been were you are now !!!!i had six month treatment. planned a holiday had a stem cell transplant. planned a holiday. life is and will not be over it will be diffrent but not over rebecca on this forum. does always say that she plans little things on vvery good. days and that might just be meeting a friend for a coffee or going for a bit. excersize. we all have copping mechanism. so try to keep positive and take very little notice of the prognosis of this disease. the figures are very old and things are greatly improved now. take care good luck xxx ann
Thankyou Ann,my consultant told me the prognosis is years and because of advances in treatment they may even find a cure ? I’m so grateful to you and Michele as you’ve both eased my mind a great deal . I’d never heard of Myeloma until I was told I might have it ! Once you are in remission do you feel ‘normal’ or will there always be signs of the myeloma ?
Hi Sarah
Welcome – & I’m so sorry to hear you’ve had a difficult few weeks worrying & waiting. I was told at a similar time last year that was my pp was 27 & then – like you – had a tortuous wait for a New Year bone marrow biopsy & skeletal survey.
I haven’t had any treatment yet as such – just “watch & wait” monitoring with 4 monthly appointments for the past year so you may find you are on a similar path. I am not the only one for sure!!
I think it’s the waiting for the results that’s the worst bit!! I constantly pep myself up with little rewards ( any excuse hee hee!!)
Love & hugs,
C x
Hi again Sarah
The quality of remission seems to vary depending on whether you opt or are put on maintenance treatment or go totally drug-free.
I’m in the drug-free camp and live a very happy, active life with only a 6 monthly visit to see my lovely specialist.
Even after all these years, only my family and close friends know I’ve got MM. I don’t bother to tell anybody else as I don’t look or feel as though I’ve got anything wrong with me!
Lots for you to look forward to. : ))
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