[EmmaParticipant]

Hi all,

It's been a tough week so far, my mum who is just about to turn 64 and has led a healthy and fit life was diagnosed on Friday with Mylemoa. We had never heard of it before and as soon as it was mentioned at A&E on Tuesday I made a note and returned home and took straight to the internet….which ended up frightening the life out of me until I came across this forum.

Mum had a hip replacement in April 2011 at which point the consultant told her she had severe spondylosis at the base of her spine, no treatment required and she was not in any pain at that time. In the past 4 months mum has begun to struggle with back pain and in the last few weeks she has had pain in her right leg. Back to the GP to be told it was Sciatica as a result of the spondylosis. She was given Naproxen and Tramadol. The pain continued and seemed to get worse so back to the GP she went. She was given Amatryptline (if that's how you spell it) and stopped the Tramadol. Mum has been very tired, not feeling like eating, she has been in pain and generally feeling low which is very unlike her. The GP requested blood tests which were taken on Monday, then came the phonecall on Tuesday requesting she see the GP urgently. She was anaemic and the GP was concerned about the pain and bloating my mum was now experiencing in her abdomen area. It was then requested we go straight to A&E for more tests. 7 hours later mum was admitted, her blood tests revealed she was amaemic Haemoglobin of 10 and there was some kidney impairment (which the DR has now informed us has been as a result of the Naproxen). Since admission mum has been on constant IV fluids to get her kidneys to pick up, she is having daily blood tests, she had a bone marrow sample taken, she has completed the 24 hr Bence Jones urine collection and is having her urine checked regularly as she has proteins and 'other things' they say. They thought she may have an infection but not yet on any antibiotics.
She has had 14 xrays and an MRI.

We met with the Haematologist on Friday who was great. She gave it to us straight, it's not curable but it's treatable although it will always come back. Mum has a fractured vertebrate at the base of her spine and she has lost 1" in height, this is the reason for the pain in her leg and the bloated abdomen. They are not concerned about the spinal cord and she will not be paralysed. Mum is going to have radiotherapy on 24th Oct hopefully just 1 or 2 sessions, the DR says this will help with the pain and tumour. She is going to be on CDT for 18 weeks, 6 courses 3 weeks each.

We haven't been told what stage the myeloma is, although I'm not sure we're ready to hear yet. The bone marrow results are not back yet, the DR said she had seen enough from the other tests to start treatment for Myeloma now though. I'm not au fait with all of the terminology as yet or the exact procedures so forgive me if this seems a bit basic and vague at the moment.

I have spent days and nights in tears just thinking about my poor mum and how she doesn't deserve this, nor does anyone. She has 2 beautiful grandsons who she loves with all her heart and they love their Nanna so much. If the radiotherapy can help ease her pain, which she has been suffering for months due to the spondylosis and has effected her mobility and independence, then that will be a massive positive and give her the strength to keep bashing this awful disease on it's head and keeping it at bay. Having read many threads on this forum and other people's stories regarding their lives with MM I realise this is a rocky road of many ups and downs. I just want my mam to have a decent quality of life, she is a very strong and independent lady. I am an only child and my mum is single. It's pretty much me and my mum, I have a fantastic husband and lovely in-laws (who have been abroad this week unfortunately so it has felt like a very lonely time), we are all going to be there to keep mum strong and positive.

Sorry for going on, I'm hoping writing things down helps get out of my head. Everyone on here seem like such a lovely bunch, I'm not sure my mum will get on here but I have already been talking to her about it and other people's experiences. My mum actually said, "Onwards and Upwards" which immediately made me think of Tom, a man I do not know but have read alot about!

Thanks for taking time to read this, best wishes to everyone,

Emma.

[missray2012Participant]

Hi Emma,

I'm 27 and my Mum is 64.

about 2 years ago my mum had problems with her ribs and was told that she had simply pulled a muscle whilst digging.

After numerous trips to the Doctor and several types of pain killers later, she demanded a chest x ray .

Thats when we got the phone call from the doctors surgery for us all to come down as the x ray and blood tests showed things to be a little out of ordinary.

It took from Oct 11 – January 12 to diagnose it as Myeloma.

Like you I googled it and i've learnt to only look at this site & the NHS one – the others scare the living daylights out of you!!

My mum had 4 cycles of tablets , followed by a stem cell transplant in August.

Today she was told she is doing brilliantly and is back at work!!

Its safe to say the journey is full of ups and downs but you literally have to take it one day at a time.

I went to a myeloma info day back in April and the prof told us that he has two patients that have had their transplants and not relapsed for 20 years.

The man sitting next to me had been diagnosed 13 years ago, and the woman in front 15 years ago! You will find that lots of people with Myeloma have been diagnosed quite a few years ago 🙂

Hope this helps and private message me if you ever need to talk.

p.s sorry for spelling – typing very quickly whilst on my lunch at work!

Rachel

[jmsmythParticipant]

Dear Emma

So sorry that you have had to join us but you are very welcome. My hubby has Mm and is just starting his 6 th cycle of CDT with the hope of going for a stem cell transplant. Emma it will take you some time to get your head around it but you are in the right place. This forum and the Myeloma Beacon (USA) are great sites for information. You "know" Tom already!!! He is great for advice and has a great sense of humour. You will make lots of cyber friends and don't apologise for 'going on', that's what the forum is for, you can rant, rave and ask for advice and information. They are a great bunch of people. Also Emma don't forget Ellen and Maggie the myeloma nurses on the forum, they are really great. Email them if you need need any medical questions answered or any of your worries.

Don't know where you are but if you get a chance to go to a Myeloma Infomation day, take the opportunity. It is worthwhile

My best wishes to you and your mum
Love Jean

[BADGERParticipant]

Hello Emma

what a terrible shock for you all I dont think anyone really gets over it we just learn to live with it the trearments now are so much better than even 10 years ago with new ones coming on every couple of years you will get some really good advice here and the myeloma help line is a god send they seem to be able to answer most things best wishes to your mum I hope she will feel better soon
Love Jo x

[BADGERParticipant]

Hello Jean
like the new photo of you and Frank how is he doing at the moment any news about his SCT is it soon will mail you soon
love Jo x

[PeterJamesParticipant]

Hi Emma
As a mere male, older than your Mum, even older than Tom , but I have more hair, for the moment, welcome to our unwanted exclusive club !
I was diagnosed by chance in May this year, anaemic @ 10.5 .PP @ 46
Just about to start my 6 th cycle of CDT, after 4 cycles my PP is at 5, get results on the 5 th this week.SCT in Jan , I hope
We all seem to react differently to the drugs , but tell your Mum to stick at it
Steroids turn me into Rambo with attitude , but also get rid of all my arthritic bits for four days , which is nice
Learn all you can about MM, from this site , Myeloma staff , info days , Macmillan cancer also have a good booklet,the International Myeloma Foundation is also very good to sign up with, they are the USA version , where all the new drugs seem to come from, knowledge is power over the cancer
Check if there is an info day near you & take your Mum to it, my Wife & I went to the Manchester one , very worth while
Keep away from the Internet, old sites are bad for morale.get your specialist to tell you everything
I was told to drink 3 l/ day of fluid to keep kidneys well flushed, then toilet , toilet,
Above all stay positive for your Mum
Best wishes
Peter

[JoanneKParticipant]

Hi Emma… Sorry to hear the news about your mum. It's my dad who has myeloma and its hard to take in isn't it.

It took me quite a few months to pluck up courage to join this forum but I'm so glad I did because everyone is so friendly and offer such a lot of advice and a wealth of experience! Don't hesitate to come on and 'let off steam', I find that it helps me.

Take good care of each other.

Very best wishes

Joanne xx

[EmmaParticipant]

Thank you everyone who has taken time to reply. I've just got back from visiting mum in hospital, she seems to be enjoying the rest and being waited on! There's a sickness bug going round the hospital resulting in wards getting closed, typical just as they say her kidneys are improving, just hoping she doesn't pick it up.

Rachel, thanks for your advice and info, I had read your discussions before and thought that we were both in a similar position with our mum's being the same age too. I'll definitely keep an eye out for info days, we're in Northumberland.

Jo, Jean and Peter, thanks to all of you for your words of advice and encouragement. I will pass all of this on to my mum and I'm sure she will appreciate it.

So much for this being a 'rare' disease – my husband has learned of 2 other relatives of colleagues also recently diagnosed.

Best wishes,

Emma.

[EmmaParticipant]

Thanks Joanne,

I've been reading the forum every night for a week looking for answers to my questions. I felt it was right to join so I can talk to others in the know. Even before I wrote anything I felt like the forum had helped me understand what was going on a bit more and what we are likely to face in the future. It has given me hope which in turn I can pass on to mum.

Hope your dad is doing well.

Emma x

[AliParticipant]

Hi Emma

Welcome to this forum that has been a godsend to me for almost a now. Im so sorry to hear about your Mum, and I can understand what you are going through at this time.

My Mum was diagnosed last November (11.11.11 to be exact) I will never forget that date. She was 57. My lovely Mum…. none of us had heard of Myeloma, such a bolt out of the blue. Of course, the first thing I did was google it – big mistake. I then found this site, and as I said its been a godsend. There will always be someone comes along to answer your questions. Someone just behind or just ahead treatment wise.

So, after 6 cycles of RCD (Revlimid, Cyclophosphomide and Dexamethasone) and a stem cell transplant in August, Mums doing really well. She has coped tremendously throughout and although there have been a few ups and downs along the way shes found that its all very "do-able". There really is no other choice other than to get on with it. Just to let you know that you will feel easier about this eventually. Feel free to private message me if you want… go to your profile page.

Love Ali xx

Dont ever feel you are "going on" – thats what we are here for.

[tomParticipant]

Hi Emma and Mum (name :-))

Well like all the others am sorry you had to join us, and hey reading your first post you klnow more than I and thats over nearly four years down the line 😎

Your Mum sounds like a strong Lady and will get through it all with your help.

I was first started on CTD in Feb 2009 for 5 28 day cycles, then SCT in December 2009 and as they say the rest is near forgot 😎

It will be a hard and uphill battle with the dreaded MM but as am sure it is "Doable" as you have read.

I hope you know that Peter is a Tad older and far wiser than I and did I mention more hair?? He he and am sure Jean is wrong Re "Tom has a great sense of humour" Lol (thanks folks)

Good Luck on the Journey into remission with your Mum, and Mum is Correct "Onwards and Upwards" is the way to go 😎

Love and Hugs

Tom "Onwards and Upwards" xxxx

Ps dont know if you have a F/B but a few of us on here are on it 😀 xxx

[PeterJamesParticipant]

Hi again Emma & your Mum
It was described to me also as a rare disease, although I have a friend who has a friend with MM
But the average GP will only have two MM cases in his/ her whole career
I think I am a first with my GP, but he knew something was very wrong with my blood apart from being aneamic & sent me straight away for tests, when i was at stage 1 , god bless him !
This forum is better than the 10 o'clock news for info & chat, it all helps
Keep positive , even onwards & upended
Peter

[PeterJamesParticipant]

Hi Tom
Three teeth less now as well , was quite fond of them , they nearly filled me with Zometa today , two weeks early, I fled
Sorry about your hair, with all the stress in my career , I should be as bald as the proverbial badger, not that I do stress or worry beads. I leave the worrying to you younger ones
When it has all fallen out I will either modify my pic or drive over & buy you a pint, your choice
Keep on upwards
Peter

[Pickle2024Participant]

Hi Emma,

I was in the same place as you earlier this year. My dad was diagnosed with mm after suffering severe back and hip pain for months. They thought he had slipped a disc but it was only after being on morphine and no improvement in the pain was he sent for an MRI scan. He had lytic lesions in his hip, rib and back and oven ever seen anyone in
So much pain, it was awful. He's since had a weeks radiotherapy on his back and competed 6 months on ctd and is no longer in pain. My dad is 73 and I can't say he found the treatment a walk in the park……steroids are the worst and made him tearful, cross, emotional and drained!!! Thalidomide made his fingers and toes really sore and the chemo didn't really affect him much. His haemoglobin was 7 when he started and now nearly 12, his light chains nearly 8000 and last reading was 52 so it does work :-). I found it helpful to know as much as possible as mm so you know what to ask when seeing the consultant. I really hope your mum is feeling a bit better, a bit of a journey ahead but it will be worth it!!!

Take care and love to you both

Nicola xx

[mhnevillParticipant]

Hi Emma

Welcome from me! You have had so much good advice from the others that there is not more than I can add, but wanted to say hello. I can sympathise with where you are coming from. I am 67yrs, diagnosed two years ago, and have one daughter and two young grandsons. Kate worries so much about them not knowing me as they grow up. Me, I'm hoping for many more years. I had six cycles of CDT finishing a couple of months ago. My PP are now nil and my bloods are near normal. I am not going for a SCT.

About pain. I have had advice from the pain nurse and take two OxyContin 30mg daily and these cope with the arthritic pain, but not the bone pain in my back. I am now trying diclafenac but not having too much success. I do find the Pain Team really great. Has your Mum spoken to them? The RR will hopefully help.

Do travel hopefully.

All best wishes.

Mavis

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