looking for a bit of advice

I'm sorry - I don't have any experience of this, and your poor mum's case sounds quite complicated. However there are Four stages, and she is not in the fourth one, so that is some good news. I really want to wish all of you the very best of luck. I've no doubt someone knowledgeable will comment soon. In the meantime, Hugs xxx Penny

Thanks Penny, now you have really thrown me, I didn't know there are 4 stages, all the literature seems to note only 3. What's the 4th? Just when you think you are getting your head round all the jargon, something new pops up,think I will have a lot of questions for the consultant.
Gx

Best thing to do, as you have just noted, is to write down all your questions before you see the consultant: then try to jot down some of his answers. It's so easy to get to the exit and think, what about... Have you tried looking up this one on CancerBackup's own site as their info is very straightforward, and all the treatment is applicable to the UK. I'll have a go now and see what I can come up with xxxx Penny

PS - just had a scout around and found US site - yes, that only mentions three stages. Don't know why MM is different from others. Sorry about that - hope I didn't confuse you too much. We have got several Melanoma sufferers, and I'm sure they will be along any minute to cut short my well-meaning but erroneous rambling and put you straight. xxxx Penny

Hi GMM,

Sorry to hear about your Mother's diagnose of MM (Multiple Myeloma). I'm in Australia and have only just joined this website and computers are not my strong point. I'm not as advanced as your Mother. I was diagnosed in September,2006 and had 12 injections of Zometa (Bisphosphonate) in 2007 and about to have my 6th course of Dexamethasone (steroid tablets) which I'm having side effects from.

I Think Penny is confusing MM with Melanoma (sun cancer) which is better known by people especially here in Australia. My Haematologist won't talk about Stages because he says people are so different with MM and don't fit exact into one stage. From what I have read there is only three stages.

I found the American organisation "International Myeloma Foundation" a great help and they will sent you booklets free explaning MM. Of course I sent them a donation to cover they costs and they sent back a lovely letter thanking me. They will also send you email updates if you want them. They can be contacted on their website:
www.myeloma.org

Hope this is of some help and give my love and a big hug to your Mother.
Dawn

Hi guys,
Gmm and your mum - I feel for you, right at the beginning of treatments etc, as they are really complicated just when you need time to get your head round the diagnosis - and there is an awful lot of uncertainty. We found this so scary and annoying as everybody else seemed to have answers and we sometimes felt quite frustrated with the consultant/system. But actually he answered everything as far as he could - myeloma is just such an uncertain, individual condition, especially as nobody's heard of it! However, the fact is that there are also loads of different treatments available right now, which I find reassuring - and even more round the corner, and only someone who knows your Mum and her myeloma can really tell you what her options are.
We are just over 3 months since diagnosis and the fact that I now feel able to type things on this site tells you that we are surviving!!! Expect a lot of appointments and complicated tablet/medication regimes, but things do gradually get a bit clearer; also the best website other than this one (cancer backup) that we've found is the UK version of the one Dawn mentioned above: www.myeloma.org.uk
It's fantastic and you can read all the info on line, don't have to wait for leaflets. You can also ring specialist nurses!
Like Dawn my husband wasn't given a stage as you can move between them...
Sending good thoughts to you both, Dawn, Penny and all the other fab people I have read about via the site.

Clarity

Thanks for your words, makes you realise that there is others out there like yourself. Still feel in the dark, but have taken everyones advice and am trying to make an appointment with the consultant to see how my mum has responded to treatment and what is the way forward. My mum also is a diagnosed paranoid schizophrenic (which she has suffered from since I was a child and still has semi-regular episodes) and which in the consultants words 'will make things interesting' especially as the steriods can cause confusion (?) She has just received radiotherapy for part spinal compression which seems to have helped with the weakness in her legs and she can now sit up, but I don't know what impact the steriods have had. They are discussing chemo but in a mild form. Still feels very strange to be discussing things like this, but as you say you have to go on, my kids still need fed, I still have to work and the housework doesn't stop just because you want it to!

I hope your world is still turning and you find happiness and humour in the unlikliest places, through my life its sometimes the only thing that keeps you sane.

Gxx

Thank you for taking time to answer my message. I am just going to go and have a look at the website you recommended. It is good to hear from someone who seems to be around the same age as my mum. From what I have read, it certainly seems to be a very individual cancer and people respond in different ways. The consultant was honest and said he has had people who have come in with the early stages of MM but have not responded well to treatment, but others who have come in with more extreme symptoms but have responded very well, so it does seem to be a waiting game at the moment. She has had her first course of steriods and radiotherapy to help with part spinal compression and they are talking about mild chemo. Unfortunately she is also suffers from paranoid schizophrenia which may cause some complications in terms of how they treat her. Anyway, trying to find the positives in a strange world isn't easy, but I know they are there. I hope you are feeling well just now and life isn't too hard and I really do appreicate you message, it is really nice to speak with you, especially from the other side of the world to me!
G
x

Hello Dawn:-

Like you computors are not my strong point, or any chat room. My mother
was diagnosed 4 years ago. The hospital found the abnormal paraprotein
level when she was admitted with what we thought at the time was a small
stroke. She started treatment when her level of para.prot. level reached 37? She has had 14 lots of Zometa, 6 months of chemo in tablet
form 'mephalan, steriods, and now has weekly injections into her tummy.Her p.prot. reading is now 22 ? My sister and I ask all the questions we think might give us some indication of what to expect as mum does not have much quality, she spends all her time either on the settee or in bed. It hurts to see a usually life and soul person reduced to this, her emotional side seems to have disappeared ? We know that she has lesions all over her body, and cannot stand any length of time. Our consultant says she is stage 3.

Hello GMM

I'm really sorry to hear about your Mum. I had a very good friend with multiple myeloma - sadly he has recently died but this was 7 years on from his first diagnosis. He had just started with a new treatment called Velcade (I think that this is how it is spelt)- this is one of the drugs not yet financed by the NHS but his oncologist at the Charing Cross Hospital got him onto a trial so he didn't have to pay. Sadly, it was too late for my friend Alan but perhaps it is an option worth talking about with your Mum's oncologist.

Sorry I don't know anything else about multiple myeloma - only to say that for the first six years after his diagnosis, my friend Alan still lived a very good life - it was only the last six months that really wore him down and perhaps if the Velcade had been available earlier, that might have helped.

All my very best wishes

Mary

I was surprised to see this in your message as my father was found semi-conscious on 23rd Dec 07. His protein levels were sky high and the paramedics thought he too had had a small stroke. My brother found him on the bedroom floor suffering from hyperthermia. He spent 3 months in hospital most of it in ICU and came out with a diagnosis of MM.

Each day he wakes he says thankyou.All he remembers of the incident is a woman whispering in his ear.. come on love nobody dies on my watch...

He is due to have an assessment for the stem cell transplant tomorrow (tuesday 8th) so fingers cross they can do it. His spine is weak. He cannot pick up his new granddaughter or it would shatter his spine. Yesterday he had pains in the top of his leg so i believe its spreading.

The good to come out of this is we joke about cancer and how stubborn we can be when faced with death. He has to wear a back brace, so being a retired officer i joke with him about a soldier wearing a corset!!

My dad is so lucky in a way, his boss' mother has myeloma so his boss understands fully what he is going through. I turn to this website for my information and support.

Several people have mentioned stages but i dont remember my dad mentioning his stage.

Lets hope that soon a drug will be developed to cure MM and more awareness to old doctors is available as three docs misdiagnosed my dad for months chucking pain killers at him for back ache.

wish everyone on here all the luck in the world and to bring a smile to your face...just remember this:

Life's journey is not to arrive at the grave safely in a well preserved
body, but rather to skid in sideways, totally worn out, shouting.....
Holy S**t..... what a ride!

kaz x

Hey

Just a note to say that I read your message and absolutely love your quote...in fact I loved it so much that I have sent it to most of my friends as it is a great reminder of how we should live and enjoy the good times, especially poignant for many of us who are watching a suffering along with loved ones - black humour, funny moments, and just a smile can be enough but ...if you can, go loud, proud, with your head held high and a little bit disgracefully is always good!!
Gxx

Where does it come from? xxx Penny

What a brilliant message, your quote made me laugh. I hope your dad had good news regading his stem cell transplant. My mum saw her consultant
on Thursday, her paraprotein levels are around 26 now and stable. She has had 6 months chemo, zometa infusions (only until September though), after that we are unsure. She too cannot pick up her great grand-daughter, but she makes her laugh.

I am new to computors, chatting etc., but I find it a great comfort to be able to relate to others going through this and comparing notes.

All the very best to your dad kaz, look forward to hearing from you later.

Ditty x

its great to put a smile on strangers faces. the quote was sent to me in an email.

I have many more so may put up a blog with them on it.

My dad now has to have an assessment for his breathing, lungs and heart to make sure he will survive the transplant. His specialists say he is fit enough but they need to be double sure.

My dad has shrunk by 5 inches so when i see him i tell him to stand up!! we dont half have a laugh. Due to the steroids (dexamethasone) he could eat for england!! Just to wind him up ill make something he loves ie lasagne take a pic on my mobile and send it to him knowing he cant cook. so he sends me one back with a pic of a yorkshire pud knowing fine well i cant make them... we live 200 miles apart but are closer emotionally than we have ever been.

you said your mums paraprotein level is 26, my dad's level was 24 so they seem to be in the same boat just different drugs. He is on a combination called CTD or cyclops as we call it.

'Life is not measured by how many breaths we take, but by the moments that take our breath away'

take care all

if u want a laugh go here

http://coolsig.com/

its full of them

May your coffin be made of 100 year old oak from a tree that I plant tomorrow.

take care penny and enjoy *<8oP

Just a note to say thank you to everyone who took the time to reply to my questions and just to say hello. My mum passed away on the 18th August, after contracting pneumonia. After only 3 months the kidney dialysis, latter stage cancer and peumonia in both lungs just became too much and she did the most courageous thing I can ever imagine and said she had had enough.

Once again, thank you; sometimes reading a funny story, a kind word or simply a hello, was enough to help me through the day. Cancer is a club that no-one wants to join but if you find yourself there, you are gauranteed to find that it is full of extra-ordinary people, some of whom I was privileged to meet.
Gxx

really made my day, i am battling breast and lymph node cancer and just heard this morning my cousin in canada died on saturday of overian cancer, just on my way to chemo and have severe miseries, just read your quote which cheered me up no end. Thank you darling you made my day xxxx

and I think it is true that when the door opens we are ready to go through it, and family are hopefully comforted by thoughts of what we have done together throughout the time we had. Best wishes to both of you. Lots of love xxx Penny

Hi gmm,
I wondered where you had been all this time, so sorry to hear of your loss and that weird mix of feelings that come with it (Janis too)
Thanks for being my 'buddy' and the very best for the future.

Dear Gmm and Janis

I too am sorry for your loss i recently lost a friend to oesophagus cancer. Im dealing with my father continuing with his treatment. I dread the day when things go the other way.

I agree fully that knowing about cancer is one thing but dealing with it face to face everyday is an entirely different kettle of fish.

Here we all deal, we laugh or cry, shout or walk away but we always come back to a place we feel safe. Safe to let go, to show emotion without ridicule.

Gmm you too are brave for sharing with us the loss. I hope i have the strength when the time comes.

My deepest felt condolensces to you both

karen

Hi Gmm,

I would like to express my sincere condolances following the passing of
your dear mum.

Sorry I haven't been on the site for a while coz now my father has been
diagnosed with bladder cancer and we have been backwards and forwards
to the hospital for tests etc. He has had a tumour removed last week from
his bladder and is at the moment recouperating at home, he is 87. So now
we have myeloma and bladder cancer. Reading other people spilling out
is such a comfort as sometimes life takes such a cruel turn to the best
of people, who wouldn't harm a fly.

Again our thoughts are with you at this sad time. Take care

Dittyb

Hi Gmm,

My hubby has myeloma. Want to tell you something that most people don't know in dealing with Myeloma. The 'stage' your mother or anyone is in has absolutely no baring on the outcome potential with treatment. So don't be concerned about which stage she is in. In fact if Stage 1 they wouldn't treat her at all.

Having said that, her other health conditions and her age (ability to recover) will make things much more complicated for her. Right now Myeloma is incurable, but treatable, but is still considered a terminal disease. Her chemo will probably be an oral form of thalidomide with steroids which will make her roller coaster more emotionally and combined with her other mental issues, it will be a rough ride I suspect. The radiation treatments are to shrink the lesions on her bones so that she is more comfortable. So everything you can do to get her pain managed which will help to keep the emotions down to a dull roar. I found that after we got my husband's pain under control he wasn't having the flare ups that everyone said was caused by the steroids. So I'm not so sure its the steroids that are causing that. But that was just my experience.

She will also most likely develop peripheral neuropathy from the thalidomide. You can start her on Alpha Lipoic Acid (600 mg 2x/day), B6 50 mg/day, Folic Acid 1200 mcg/day and B12 shots (but I hear you can't get them in the UK). They may prescribe her gababentin (sp) which is a safe drug, but I was able to handle my husband's with the Lipoic Acid very well and there are research papers supporting it, and oncologists here in the US are putting their patients on it more and more for neuropathy issues (which is nerve damage and manifests itself generally with numbness in hands and feet, but will progress if untreated and can become permanent if not controlled).

The websites you have been directed to are decent. I'm sorry that you are going through this, but glad you found this site. Its a good place to get support. Good luck - Lori

PS Here is a good website in the US I don't see listed in the posts: http://www.multiplemyeloma.org/
and a good brochure http://multiplemyeloma.org/downloads/about_myeloma/Disease_Overview.pdf