[missray2012Participant]

Hi all,

I am 27 and my Mum (64) was diagnosed with Myeloma in January.

After 4 cycles of tablets, she had her stem cell transplant 2 weeks ago.

I'm finding things pretty tough and was wondering if there was anyone of a similar age to me going through the same thing? My friends are great (The majority of their parents are in their late 40's and fit & well) but sometimes its good to talk to someone who understands.

Thanks,

Rach

[tomParticipant]

Hi Rach

Sorry to hear about your Mum but a warm welcome to the forum, it will am sure give you and your Mum plenty of advice and help.

My treatment was 5 cycles of CTD then SCT in december 2009 and am pleased to tell you I am in remission and drug free 😀

How is your Mum now? is she at home now??
Ask anything you need to ask and honest nothing is too silly for us.

Stay Strong and give your Mum a Hug from some one that has been through it.

Love and Hugs

Tom "Onwards and Upwards" xxx

[missray2012Participant]

Hi Tom ,

Thank you for your kind message.

Thinking about it – the SCT was 3 weeks ago as she has been home a week already. Within days of being home she was doing the washing and ironing and pottering around in the garden (very naughty!) and we cant seem to stop her!

She hurt her rib a couple of years ago digging in the garden and after repeated visits to the docs and 18 months later, she demanded a chest x ray. That came back with some dodgy looking areas on the ribs and a broken one! That was when the nightmare began . After further scans and some areas found on her pelvis there was talk of bone cancer. She had cancer of the lining of the womb 8 years ago and at first they thought it may of spread. We spent all of last Christmas not knowing what it was – it was awful!!

Finally in January she was diagnosed and to be honest I still struggle to believe its actually happening to us. I'm an only one so I don't really have any bothers or sisters to talk to.

She is doing well at the moment but i'm scared about the future – but seeing that you are still in remission is fantastic!!

How long did it take for you to feel 100% after your SCT?

[stewasParticipant]

Hi Rach

I have not contributed to the site although i check it every day but i felt i had to reply to your post as i know how my 3 daughters and grand children have been affected by MM. It doesn't matter what age you are as my oldest grand daughter is 11 years of age and she can not understand why her Papa who is nearly 60 and relasped in April after having his chemo and stem cell transplant in November 2010 is now having to have all this treatment again. This cancer does not care what age or person you are the consequences of it effects the whole family and friends. Just keep your chin up and try and support your Mum as much as you can but also have someone you can talk to and be able to relieve yourself of all the worries & questions you might want answered.
Take Care of yourself

Sandra x

[HelenParticipant]

Hi Rach
Welcome to the site, if you private message me I can put you in touch with my 26 yr old daughter. She went through all of this with me nearly a year ago, it's a tough journey for all of you, just let your mum get on with it in her own way.
Love Helen

[AliParticipant]

Hi Rach

My Mum was diagnosed last November – she was 57 at the time and 58 now. She had 6 cycles or RCD and is now on day 11 of her SCT. I am 37 if you need to chat private message me, or you can find me on facebook. Perhaps we could help each other as your Mum is a few weeks ahead of mine.

Love Alison xx

[tomParticipant]

Hi Rach

I see you have got some good posts to read 🙂 and am sure it all helps, you wont be able to stop your Mum doing her bit but she will need to rest up and let her body heal.

How long was it before I got fit?? and 10% to be Honest Rach I aint 100% but am good enough 😀 but when I felt Better and knew I was better 😎 would be about two month post sct and I woke up knowing I had turned the corner, even my Young Bride (Elaine) knew I was a new man when she came home from work and I didn't say anything 😎
You and your Mum will get through all this uphill at times then it just seems to click into place averything is near back to normal.

As Ali says She and and lots of others are on Face Book if you are on come on over and find me 😎

Tom "Onwards and Upwards" xxxx

[mhnevillParticipant]

Hi Rach

Welcome from me to the forum. I am 67 yrs ans haven't gone down the route of SCT, but have just finished six rounds of CDT. I was interested in your post because I also had cancer of the uterus, but again, with no conection with the subsequent development of myeloma. I am very impressed by your Mum's resislience and the fact she is already doing so much so soon after her SCT. Hope she doesn't push herself too far.

My only daughter is 38yrs. She found it easier to cope with once we found that myeloma isn't neccesarrily an immediate death threat and that, in fact, many people survive, with treatment, for many years. This is where this Forum is such an encouragement.

Best wishes to your Mum and to you.

Mavis

[missray2012Participant]

Hi Sandra,

Thank you so much for your message.

I guess you are right – the cancer doesnt care who it effects.

I hope you, your husband and family are well.

I'm finding the forum really useful with regards to support/answers 🙂

Rachel x

[missray2012Participant]

Hi Mavis,

You are right! We spent the whole of last Christmas thinking it was bone cancer and that there were tumours elsewhere.

Once we had the diagnosis of Myeloma (be it not great) we were relieved to see that it wasn?t immediate death.

The doctors were shocked that she had Myeloma as they said it was quite rare for someone to have a tumour based cancer to go on and have a blood/bone cancer (what rubbish luck!!). Did anyone say anything similar to you?

Best wishes

Rachel

[stewasParticipant]

Hi Rach
I was really pleased to get your reply.
My husband went to hospital today to have his blood tests and chemo which was to be the start of his 5th cycle and we were told 2 weeks ago he had to have 8 cycles. The consultant has decided since then that he has to go in to hospital on the 3rd of Sept. to start the treatment for his 2nd SCT which is the day before his 60th birthday. Please do not hesitate to contact me at any time all the best to your Mum you take care.

Sandra xx

[GillParticipant]

Stephen has had mm since 2008 he was diagnosed at 53 Recently he had symtptoms of brain cancer and his team looked and looked again (I love the team that work on his behalf)

What they have found are 2 little blighters in the base of his skull. Not good but nott quite as bad as in the brain

Now your mum has been diagnosed she will get the best treatment possible for mm

Good luck Gill

[Earthangel79Participant]

Hi Rach,

Its my first post on here. I saw your post and I just had to respond. I?m in a very similar situation to you. I?m 32 and my mum is 66 next week and she was diagnosed with MM in March this year.

When we first found out I felt like my whole world had come crashing down. I just couldn?t believe that my wonderful mum could have cancer. She?s also been so vibrant, healthy and fit. I still struggle to get my head round it some days.

She has undergone 3 months of CDT but has really struggled with the treatment. She is suffering terrible side effects and finds the tablets affect her emotionally as well and she feels anxious and down a lot of the time. She has actually asked to come off the CDT as she feels she has no quality of life. The doctor has agreed to this and she starts Velcade in a week?s time I?m just hoping and praying she copes better with this as it seems she will have another 4 months to complete.

I can totally relate to you because although my friends are good they don?t have a clue what I?m going through or how it affects my whole family. Would be really nice to talk to someone else who understands a bit better.

Wishing your mum all the best.
Kerrie

[ilovemymumParticipant]

Hi Kerrie
Just wanted to let you know, my mum is 72 and was diagnosed in May this year, the first 5-6 weeks were the worst then things have got alot better. My mum is on velcade and dex and is just on her 3rd cycle, she was quite poorly on the 1st cycle but her kidneys were quite bad and I think this is why, since then she has come on in leaps and bounds and although gets quite exhausted the sickness etc has gone. Her paraprotein levels have come down to 7 from 28 and she is not even half way through so it seems the velcade is doing a good job! My mum has it by subcutaneous injection in tummy every friday for 4 weeks then 1 week off. Hope this helps now your mum is going to be having velcade to know that my mum has been okay with it.
Love Rachael x

[missray2012Participant]

Hi Kerrie,

All of my friends parents are in their late 40's/early 50's whilst my mum is 64, coming up to 65 so its really hard to find someone who understands!!

Where is your mum being treated? We are at nottingham city hospital.

During my mums 4 cycles of CDT she did have a couple of side effects. She had a rash and the steroids seemed to make her very very ratty!She also got a lot of cramp in her hands for some reason! Emotionally it was really tough. Part way through she became very low and said she didnt want to take any more tablets – she had had enough.

With help from my Dad and I , we managed to encourage her to keep on going.

She is now about 2 weeks, maybe 3 post Stem Cell transplant and is doing well.

I know what you mean about your world crashing down. When I found out I just spent days & days crying my eyes out. Even now, when she was having her stem cell trasnplant I would find myself thinking – is this actually happening to us??? I still cant quite believe it. its so unfair.

I really hope your mum gets on well with the Velcade. I know how it can be a really stressfull and worrying time for you all. I spent the whole time hoping and praying there were no hiccups and I was always really anxious about what was going to happen next.

I know everyone says it to you , and I got fed up of hearing it but I think you need to be as positive and as upbeat as you can. I keep telling myself to be grateful that there are all of these amazing drugs/treatments around and that there are lots of different options should one thing not work as well as expected.

I can give you my email if you like if you ever want to chat?

Rachel xxx

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