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I was diagnosed with MM in July this year. This was a complete shock to me as I wasn’t really presenting with any significant symptoms other than mouth ulcers which I’d had for a few years. Anyway, a referral an Immunologist subsequently resulted in her taking bloods and referring me to Professor Jackson at the Freeman Hospital in Newcastle. This has been a huge shock for me and my family. I am a 43 year old woman, married with a 4 year old Daughter. I’ve started on the Myeloma VI trial and have responded really well to treatment, I’m actually in remission now although they intend to continue treatment until Christmas and then look at Stem Cell transplant. This is the first time I’ve been brave enough to look on the website, or contact anyone else with MM. I suppose what I’m looking for is some positive responses and hope that there is a future for me and my family. Thank you.
Hi
Well done for looking at a positive website and charity like this..This is the only site you should look at..its official and factual…try not to be scared of the facts…saying that it took me about 3 month to get over my mm diagnosis and shock..Ime 48 and was diagnosed this month last year…I was put on my combination treatment for 6 month and got thru it after getting used to some of the side effects that will affect people differently but that’s why you have to look at this website for advice because it will have the answers you will need.
I had stem cell transplant and high dose chemo in April at freeman and spent 2 weeks with the fantastic staff..I had recovery time of 3 month and then did a sponsored walk up the lakes for bright red raising £1229….stay strong and let your family and friends help you…you will get through it .. try to take small steps as this silly cancer can with treatment can be managed …but please get advice and ask questions of the people with the right answers ie the nurses at freeman and myeloma uk…my brother did the gnr for myeloma UK 🙂
We are all hear for you…I was very very poorly when I was diagnosed last year but ime here and living life to the full 🙂
Stay positive 🙂
Mick
Hi Mick
Thank you very much for your response, you sound very positive and that’s just what I need to hear right now. I’m new to this site and it’s taken a long time for me to even discuss my diagnosis. Just thought I’d share with the forum that my light chain level has come down from 29,000 to 1 so my treatment is definitely working. Wondering if anyone can share experiences of symptoms on Myeloma VI trial. I’m currently on cycle 3, week 3 and feel pretty rubbish, sickly with no appetite and low in energy. Is this normal? My first cycle resulted in an admission to ITU following a bad infection which lead to pneumonia. This made me feel extremely anxious for following treatments although now I feel that I can get through it. Thanks.
Hi julie
No probs its good to talk and get peoples opinions and their experiences..I started CTD tablet chemo for the first 6 month of my treatment thats the steroid chemo and thalidomide tablets with the daily injections and it sent me a bit funny the first couple of month, anxious no sleep and moods all over the place but I learnt how to manage them, but like everything with this silly annoying gremlin :)its à scary first couple of month as it takes time mentally and emotionally for it to sink in.
I dont know much about the treatment you are on tbh and it sounds like you have had a rough couple of months but you are still fighting and thats the most important thing.
Get this course of the treatment out of the way and dont focus to much on the stem cell treatment as thats a while away…remember one step at a time…but have trust in freemans they know whats best for us…I still get bone treatment once a month and my para protiens are next to nothing and long may it continue 🙂
#justkeepfighting
Mick
Hi there,
Can’t share experiences on the trial because I live in Germany and the medical system here is different although the treatment seems to be the same. What I will say is that your situation is similar to ours in that my daughter was 5 when I was diagnosed. We didn’t know what to say to her because of her age – just what do you tell a 5 year old? We decided the best thing was to tell her on a need to know basis and in very simple terms. Things like I was going into hospital to have some medicine and I was seeing the doctor to help make me better. We did find last year a book published by MM UK that explained about the illness to young children. We got it and read it with our daughter. She wasn’t upset by it, just fascinated and for a few weeks afterwards kept repeating bits out of the book. Now we don’t tell her when I’m having my blood tests or Zometa, I’m just going into town.
It’s now 10 months since my SCT and that wasn’t particularly succesful in that my IgG level dropped from 36 to 24. I am classed as stable only and am being monitored monthly. I feel perfectly well within myself, we do a bit of fitness workout, walk in the Forest behind the town and also have walking / active breaks. We know it will come back but we will worry about that when it happens. Incidentally, here in Germany they arrange a few weeks in a rehabilitation clinic after SCT. What I found most useful was the sport and physical activity. It wasn’t half marathons or weight lifting but regular sport has helped me to cut out the painkillers and is promoted as active treatment for MM. So, even if your not particularly sporting it might be something worth considering.
Hi Mick
You’re right, Professor Jackson and the team at the Freeman are great and I have absolute faith in their treatment of me. I find that the insomnia is a bit of a problem, I take sleeping tablets every night which helps me drift off to sleep but then I wake up in the early hours and can’t get back to sleep….what I’d give for full nights sleep again!!! Good to hear that your pp are controlled, it’s reassuring to know that the horrible treatment we have to go through actually does work. You sound like you’ve got the right attitude and I know that goes a long way to being able to cope with this condition…..I hope I’ll be able to get there soon.
Thanks again for taking the time to reply.
Julie
Hi RichardB
Like you, we have kept the information to our daughter very simple. We kept it completely from her at first but then I was admitted to hospital for a week so we had to tell her something. She actually coped with the situation far better than I would have imagined. We’d never been apart for even a night so I thought she’d fall apart but she didn’t and came to hospital to see me with her nurses uniform on. It’s so hard when you have small children, they don’t understand when you’re not up to playing out or taking them places, this has been the case over the past couple of days, it’s so frustrating….but more often than not, I’m able to manage things, school runs, etc. I take on board what you say about physical activity and I know that mentally, getting out and about helps me a great deal when I’m able. I hate being stuck in the house….hoping to get back to work next year. Thanks for your response, much appreciated.
Julie.
Yep they the experts alright…. ar my siberian husky loved my insomnia as I walked her at all hours of the nite n morning 🙂
You will get there julie and your family will help you…they go thru all this with us and i sometimes had to be there for them also in the early days as its tough on them to as you will know
In the early days I felt because I had mm ide some how let them down as a dad which now looking back was daft but its a rollercoaster of emotions and with the meds they give us it all gets a little crazy.. but all we can do is keep living and everyday is a blessing 🙂
I stay positive and upbeat because of my 16 yr old son..I aint goin nowhere julie he needs me 🙂
Speak soon
Take it easy
Mick
Hi Mick
You’re absolutely right…..having kids gives us the strength and will to fight this disease. I often feel guilty that I’ve subjected my family to this. My Daughter is only 4, nearly 5 and needs her mum around for a lot longer yet. It’s what keeps me going.
take care
Julie
Hi Julie
Thank you for your reply to my recent message. I’ve been reading your posts and I’m sorry to see you’re having such a tough time. Like you, my diagnosis in July came as an complete shock – my GP sent me to the RVI for blood tests as he was unsure what was up with me. I’d never heard of Myeloma and I’m still finding it hard to come to terms with it all. My first course of treatment caused me some problems too; I had to go into hospital twice with different infections but I was looked after so well and I wasn’t in for long. I’m half way through my 3rd course and I’m the opposite to you – eating far too much!! Like you, sleep is elusive and it must be so hard for you with a young child to look after. I’m 58 and am learning to listen to my body more; I do too much then become exhausted and shaky. I do hope things will improve for you, take care
Julie newcastle
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