[nerParticipant]

Hi everyone.
Although this is my first post on here I have been reading the forum for a few months now and firstly want to say thank you, I have found this site very informative,comforting and inspirational.
My mum was diagnosed in September and like most of you was a massive shock. Mum is only 49 and up until this point has been very healthy. This all started with bachache which got progressively worse over the course of 3 months. After several trips to the gp who insisted mum had a muscular problem each time, she was finally given an x-ray which showed a tumor on her back. However we werent told of the tumor and blood tests were ordered which we now know were looking for para-proteins. Unfortunately in the time between the scan and awaiting the test results paralysis had started to set in. Mums legs started to go numb and she was eventually rushed to hospital where we were given the horrific diagnosis of myeloma with spinal cord compression. Mum was immediately placed on her back and treated as a spinal case who was not allowed to move from that position. She was transported by ambulance to a different hospital where she received radiotherapy to reduce the pressure of the tumor on her spine. She spent 5 days there before beig transferred back to the cancer unit at our local hospital. She decided there to go in to the myeloma x1 trial and was randomised on to CTD. Mum was very brave through it all, i dont think at this stage she had realised (nor had we) the massive implacations of what was happening. Mum had to remain on her back for over 3 weeks and it was only when she was allowed to get up to sit in a chair that we all realised just how much damage had been done to her nerves and that she could barely walk two steps. So on top of learning how to walk again and to have to depend on other people for everything having been so independant her whole life she also for a little while became a different person due to the effects of the thalidomide. In january mum has started a new treatment which still includes the chemo and the dex but also velcade. This treatment seems to be much better for her and she is now much more herself. And thanks to her amazing determination and the fabulous physio her mobility is improving.
We have just been told that the level of myeloma is down to 2.7 (it was 14 at the start) and mum asked her consultant what he would like it to be before she can have the SCT and he said 0?? can anyone explain this as I thought they could not get rid of it completely.
I would love to hear from anyone who can offer advise and also if anybody has had an experience similar to mums.
Thank you all.Your all brave and an inspiration.Im so glad i came across this site.:-)

[sandydeliParticipant]

Hi Ner sorry to hear about your mum sounded really bad !!! I was the same starting with rib pain, back, then finally my left hip and as your mum the doctor kept saying it was muscular !!!!! Anyway eventually after nearly a year a blood test came back and the bomb shell news myeloma !!!!
Started on cemo thalidomide and steroids and eventually my stem cell transplant Sep. 2011 and now I'm in remision but still get pains and tiered.
I'm 57 this year as my job was very physical I have not or wanted to go back to it. So thank god for DLA witch is pain in the bum every time you have to fill forms in.
I'm sorry I can't help you on your question about the 0 myeloma but I'm sure someone on here will, but if you need any help on other things I might be able to help.
Sandra 🙂

[feaseyjaneParticipant]

Hello

My heart goes out to you and your mum.
Sorry I don,t know your name.
Your mum has has a dreadful journey with myeloma.

I,m sorry I can,t answer your question about the levels as have just been diagnosed myself
I too was experiencing dreadful backache but always seemed to be poorly.which I know now
Was poor immunity.My paraprotein level was 105 and is at the moment 95
After a sketetal x ray my bones are okay so fingers crossed
I am to start CTD very soon

This is a wonderful site ,and I,m sure many people will answer your questions.
As you will be told ,like I was try and remain positive.This is hard and many a day doesn,t go by when I have a few tears.

Take care

Jane xxxxxxx

[andygParticipant]

Hi ner
I'm sorry that your mum has been diagnosed with MM. Welcome to the forum that all of us would prefer not to be members of.

Everyone's journey with this awful disease is different – but the starting point can be very similar – I too started off with back ache and it took 18 months for me to be introduced to the world of multiple myeloma.

At diagnosis my PP's were 49 and I was told I needed a minimum of a 50% reduction in that figure before I would be considered for SCT but the lower the level the better. That was in Oct 2011 and here I am now March 2013 and my PP's are still at 19 after all the usual treatments. I'm currently on RCD cycle 13 just started. My MM has proven very resistant to treatment.

Due to all the treatments I've received and the constant use of chemo my bone marrow is a bit battered to say the least and SCT has all but been ruled out for me, both auto and Allo. Auto (self ) SCT due to me not being able to produce enough stem cells and Allo ( donor ) SCT due to no match being found.

Your mums consultant would like her PP's to be zero before SCT but this isn't necessarily a figure that has to be achieved before SCT. It depends on lots of factors the first of which is the number of cycles of CDT your mum has received. PP's can fall after treatment has finished and before SCT happens. Everyone's journey is different and everyone reacts differently to their treatment.

I'm sure your mum will soon be put forward for SCT and hopefully as a result have a long and healthy remission.

Everyday is a gift
Andy

[nerParticipant]

Hi Sandra,
thank you so much for your reply.Im really glad to hear you are in remission, thats great news and really positive and nice to hear. I hope your able to lead as normal a life as possible even though you cant work any longer. I cant believe it took almost a year for you to be diagnosed, i sympathise so much. we watched mum go through months of hell before diagnosis and were so frustrated with the GP, I cant inagine what that year must have been like for you! As awful as it is, its nice to speak to somebody that understands as I havnt spoken to anybody else with myeloma.
Thank you again for your reply Sandra. I look forward to hearing from you again.keep well.
love
nerys xxx

[nerParticipant]

Hi Jane,
Thank you too for your reply. Im sorry to hear that you have also just been diagnosed with Myeloma, the shock is awful isnt it. It must be good that your paraprotein levels are going down and fantastic that you have no damage to your bones at the moment, i hope it stays that way for you. The myeloma seemed to attack mums spine from the start although we obviously cant know how long she has had it.
The CTD worked well to bring mums levels down, i hope it can do the same for you. Please keep in touch when you can. I would love to hear how the treatment is going for you and if you have any questions i can answer from mums experience id be happy to. And if i cant there are so many helpful people on here and somebody always has the answer, its amazing.
Thanks again Jane, i look forward to hearing from you. Take care and good luck with the treatment.
love
ner xxx

[nerParticipant]

HI Andy,
Thank you so much for your reply. Your information was brilliant thank you and has answered the question i didnt understand!FRom what you say then 2.7 is quite low allready. Its such a shame that the disease attacked mums spine in that way and caused the compression because from what youve said the actual myeloma disease could be a lot worse. The immobility has been hard to deal with and we are still trying to come to terms with it.
Im so sorry to hear about your journey through MM, it sounds like youve had a really tough time too! Although i dont know an awful lot it does sound like your myeloma has been quite resistant. I hope this cycle of RCD can help. Can anybody be a donor or does it have to be a family member? My husband had a bone marrow transplant 6 years ago (for another condition) and was lucky enough that his brother was a match but if he hadnt they would have gone to a donor list, is that not posibble in your case? Thank you so much for your lovely wishes for my mum and everyday truly is a gift, its easy to lose sight of that when things are tough but I will try to remember that.

Take care of yourself Andy and good luck with the RCD.
Love
Ner xxx

[VickiParticipant]

Hi there,

Good luck to your mum and her treatment. Colin had back ache and the diagnosis of mm two months later! Like everyone else it was a dreadful shock and a real roller coaster ride due tot the induction treatment and infections that followed. However Colin had a good response had he had a transplant in November 2012. Now well on the road to recovery. He had a fractured vertibrae in his back. Your mum will receive great support from the medical teams. Fingers crossed for you all

Vicki and Colin x

[PeterJamesParticipant]

Hi Ner
I was diagnosed with MM late last May
I had no symptoms at all & was diagnosed @ an early stage from an unrelated blood test , so I was more than very lucky
My pp at the start was 42
I had 6 x 3 week cycles of CTD , had little or no trouble with this
Then referred to Chistie for my SCT on .17th Jan , my pp at this point was 3.8 & my consultant said I was in good partial remission
I should get the result of a blood test this next week to see if I have achieved full remission, which would be very nice
Consultant at Christie not too worried if we get a near miss
I was in Christie for 16 days for SCT , to be honest the first ten days were not that pleasant , most posts will confirm this
But as soon as your neuts come up to the magic no 1 , you are on your way home, tired but triumphant !
It is all doable
Being totally positive & determined is the only way
Within two weeks of coming home all my bloods & bone marrow were back to normal, now been home six weeks , still not got full taste back , but that is usual , just disgraced myself & caught first cold for over a year
All the best
Peter

[mhnevillParticipant]

Hi Ner

So sorry that you Mum has such a bad introduction to MM. Has anyone said anything about an operation to remove the tumour, or are they just relying on the radiotherapy? I had an operation and then racking put in to support my spine. in my case this was followed by the radiotherapy. I didn't start any more treatment for another year, apart from Zometa for bone strengthening.

I do send all best wishes for your Mum and all the family. She is very young. I was 65 on diagnosis.

Love.

Mavis x

[tomParticipant]

Hi nerys and Mum

A warm welcome to the site, as you know its got great people on here.
You have had your Q answered by those great folk, your Mum's Journey like most here has been a difficult one, most Dr's dont know what and how to tell its MM.
I went in December 2008 with a problem on ribcage and was told it was a "Pulled Muscle or a Bruised Rib" now i have had both of those many a time am sorry to say 😛 and told her it wasn't so after tests/xrays and bloods it was found out to be MM and that was Jan 2009, had CTD and SCT 2009 and am now in remission and drug free 😀

Good Luck to you Both in your Mums road to remission

Tom Onwards and upwards xx

[john62Participant]

Hi
This is John,my level of pp was below 1 when I had stem cell transplant.This is what we all try to achieve,however we cannot always achieve this level
and people have gone on to stem cell transplants with higher levels
and achieved good results.
all the best and good luck
John (King of Gwynydd)

[nerParticipant]

HI everyone,

Wow thank you all for your replies! your all amazing and so kind to share your experiences. Although it is awful that there are so many people on this site im sure you'll agree its comforting to speak with people that understand!
There is no mention of an operation for now for my mum, the tumor has gone with the radiotherapy but has left damage to the spinal cord which is why she now relies on her wheelchair and crutches.However she has come on so much from where we were 6 months ago to now and im sure with the help of the amazing physios she will continue to strengthen her legs. she may need an operation in the future to repair the 2 crushed vertibrae but they have to prioritise treating the myeloma.
What are the team like at christies? Depending on when mum has her sct she may have to go to christies as the harvesting unit at our local hospital is currently closed. They are trying to have it re-opened but this may be months away in which case christies is the closest ( 2 hours away).
Its so nice to hear that some of you have reached remission and have remained that way for a while. hopefully this will be soon for mum too!!
cross fingers for all of you who are awaiting results soon, i look forward to hearing your news.
Stay well everybody. 😀
Love
nerys xxx

[LizcParticipant]

Hi
Sorry to hear about your Mum, like your Mum I was diagnosed out of the blue with renal failure and a tumour on my neck, which if left any longer would have left me paralysed. So I had an emergency operation to stabalize my neck, head and spine with metal plates, which means my head is in a fixed postion, can't move it from side to side or up and down. I had radiotherapy and then went on to cdt for 6 months. My pp at diagnosis was 67 and just before stem cell transplant was down to 3. I had my transplant in Februaary last year . Didn't quite go accordng to plan, ended up in intensive care for 5 days but I am now in complete remission and enjoying life despite my disabilites. I feel so lucky to be able to enjoy life, I am not on any medicaton now, which is great. I was 58 when I was diagnosed and I have just celebrated my 60th, so there is light at the end of the tunnel. Please pass on my good wishes to your Mum and tell her to stay strong. She will come through it and enjoy things again.
Liz

[tomParticipant]

Hi Nerys

Your more than welcome, and as you say its good to hear about remission and long ones at that 😀

And just to add to the Good news I have been in remission since 2009 and drug free since 2012, and am selfish as I am asking for a longer remission 🙂

Good Luck to you Both

Love Tom Onwards and Upwards xx

[Author]

Posts