[MinParticipant]

On the old site we had posts that used to regularly get bumped up in order to give you the opportunity to get to know one and other, tell us a little about yourself. MM sufferer or carer/partner Treatment where etc tell us as much or as little as you wish.
I will start with the fact that I am a Geordie, living in the north east, married to Peter who is the one with MM. He is my toyboy and I am newly retired following redundancy.
He attends The Freeman Hospital in Newcastle, was diagosed in Aug09 and just had his 2nd transplant. Currently suffering in hospital post transplant, from all kinds of virus's and chest infection. But hopfully it will all be worth it
Min

Time for an update now we have lots of newmembers.
I have edited my old post to make it more up to date and if you wish to do yours just go to edit after you sign in and you can add alter or delete as you wish

[brochoParticipant]

Hi everyone, great idea Min ! My name is Bridget I was diagnosed with mm in 2006 after 3 vertebrae disintegrated. I had a spinal reconstruction and am now known as metal micky!! I had an sct in 2007 which gave me 18 months partial remission. I was then on the Myeloma X Trial which gave only a short break This time round I was on velcade for 3 months but as it wasnt working I have now changed to Revlimid . Unfortunately Revlimid didnt work either and I am now waiting for radiotherapy to get rid of a tmour on my spine and then will have further treatment to get shot of the mm cellls I live near Luton with Jeff ( also a toyboy) ,we have 5 children and 4 grandchildren who all live close by. I am treated at UCH London and occasionally at my local hospital . I am a ferocious knitter these days and also watch too much tv and too long on my laptop Pass the baton to the next one Bridget x

[zasrsParticipant]

Hi all

My husband gordon has mm fraid he is not a toy boy!! Big mistake. He was diagnosed 9 years ago and had a sct in 2002 which lasted 6 lovley years with gordon taking thalidnomide with few side effects, he then had a trial of revlamid, which kept him well for approx 2years ( b.. dex) then lapsed had 6 i think cycles of velcaid then sct in november 2010, big treatments at Kings C Hosp london, maintance with the most lovley best Dr in the whole wide world, in eastbourne.

He is now pretty well, and on no meds except for acliovar.He is so lucky, he has walked his daughter down the aisle seen a son married and seen two beautiful grandchildren. Reading the other posts on this site I realise that gordon seems to not have so many of the other problems mm can cause, but he does have cronic bach pain.

baton past on, sorry this is so long a post.

sarah xx

[ElizellenParticipant]

Thank you for starting this thread, Bridget!

I still wear the hats you sent me in the summer although now my hair is starting to grow!

My name is Elizabeth from Bournemouth

I was diagnosed about this time last year after excruciating back pain which was caused by 3 vertebrae collapsing. Luckily my GP sent me for blood tests after a week of painkillers didn't help much and the rest is history!

I had my SCT in August 2010 and at present my paraproteins and light chains are imperceptible, so I assume I am in remission though no-one has actually said that yet.

Still have the back pain even after a couple of radiotherapy treatments, and the next stage is going to be having a thoracic brace fitted to stabilise the fragmented vertebrae as far as I can gather.

I am now 61 1/2 and although not expecting to retire from our retail stained glass supplies and teaching business I have taken a sort of 'sabbatical', opening on appointment for an hour or so every few days as people phone in desperation for that last piece of glass to finish a project, or who are starting the hobby and want tools and materials.

I hope that once I am in less pain and able to stand for longer I will be able to open the shop more regular hours on a couple of days a week and carry on the business for a few years longer.

My hubby Sam has been a tower of strength for me despite his chronic back pain and prolapsed discs, sometimes making the hospital staff wonder who is the carer and who is the patient!! This year it has been about 70/30 me being the one with the appointments and him pushing the wheelchair. 😉

Enough about me, who is next in line??

Eliz
XX
X

[jmsmythParticipant]

My hubby Frank has SMM, diagnosed in Sept 2006 after blood tests for something else. Had MRI and biopsy and were told he had Multiple Myeloma. It was some time before we found out it was SMM – no-one told us. Frank also has chronic back pain but consultant says nothing to do with Myeloma – it is an old injury. I am not allowed to ask consultant questions – took me some time to accept this – I am allowed to ask protein, calcium, heamoglobin and I think the other is white cell. Only treatment he has had is Zometa when he was first diagnosed. Were at hospital yesterday and thank God bloods are still stable. Frank has what he calls "Power failure", he would be talking to me and goes quiet and when I look he is fast asleep!!! We live in N Ireland, just outside Belfast and attend Belfast City Hosital. Sorry to go on – get carried away.
Love Jean xx

ps I am his toy girl – or at least that is what I tell him!!!

[brochoParticipant]

Hi Elizabeth it was that clever Min that started this post I am so glad she did its lovely to hear about everyone !I am so pleased you still like your hat and even more pleased my sewing has held up!!Have a good weekend love Bridget x

[GillParticipant]

Hi All

We live in Orpington Kent. It is my husband Stephen who has mm, diagnosed November 2008 after the doctors first thought he had a trapped nerve. He had CDT and then a SCT in June/July 2009 in King's College London but sadly after @ 18 months remission Stephen has relapsed and is now on Velcade and the dreaded dex. We are hoping he will have a second SCT later this year. MM has left him with permanent spine damage and it has now spread to his ribs but, thanks to the treatment he has already had, he no longer relies on crutches or a walking stick although his mobility is still limited.

I will be 61 next month and Stephen will be 56, and although I claim he is my toyboy my daughter informs me that a toyboy must be at least half your age!!!

We have 2 West Highland White Terriers One aged 2 years and one aged 10 weeks. We were spoilt with the older one as she was very clean right from the start. Anyone want a very cute 10 week old poop and wee machine that does it anywhere???

We are closet Francophiles and the thing that has upset Stephen more than anything about relapsing is that the Velcade treatment will take around 6 months and we usually go to France 3/4 times a year for a few weeks at a time. He feels as though he has been grounded for the next 6 months.

Next Please

Love Gill xx

[ElizellenParticipant]

Ooops!!
Thank you, Min for starting this thread.
It is nice to hear about everyone else as it makes me feel more 'normal'!!

[BADGERParticipant]

Hello min

My name is Josephine but I only answer to Jo I live in Hatfield in Hertfordshire I retired in December 2008 aged 61 1/2 diagnosed with MM Jan 2009 went into AE after my docter sent me home with paracetamol my husband insisted I went to AE I had double pnuemonia renal failure and as it turned out MM
what a shock five months of CDT then on 100mgs 0f thalidamide for a following year until my feet went numb could not have SCT due to major kidney damage I attend Lister hospital in Stevenage

Love to you all Jo 😎

[susannahParticipant]

Hi Min My name is Sue its my husband Michael who has MM and has since the age of 45. That was 15 years ago, hes had 2 SCTs Thalidomide, Velcade and now hes on Revlimid and has been for approx 15months We live in Nottinghamshire and treatment is between our local hospital Kings Mill and Nottingham City.
By the way love the pic of your dog, we have a chocolate lab called Lucy,
she knows more about me and MM than anyone else love her to bits

Love
sue

[MariParticipant]

Hello everyone, this is a lovely idea Min, its been lovely to see you all introduce yourselves. I have not been here for a long time but its half term next week and i have some breathing space. Stephen, my husband, has MM and we live in Tunbridge Wells. We have two children in their 20's and a rather elderly cat. Steve was diagnosed in 2004 with smouldering MM but still ended up with spinal cord compression and was admitted for emergency surgery to the regional neurological unit in Hayward Heath in January 2010. He started CTD in Feb 2010 and then began teaching himself to walk again. He had his SCT in September 2010 and has been determined to 'get back to normal'. We were told on 22nd December that his bone marrow biopsy and trephine showed no sign of the disease and so he is in complete remission. I have been amazed at his powers of recovery as he has been back to work full time since the beginning of January after almost a year away and cycled 7 miles at the weekend. Long may it continue! Sorry to have gone on so much, I may not post very often but I am following your journeys carefully and sending out good wishes,
Love to you all, Mari xxxx

[lorraineyParticipant]

Hi Min & everyone, what a great idea!! I don't post very often but I do read the posts frequently.
I'm Lorraine, 42 and live in France with my wonderful hubby Daren and two children Leanne 19 and Josh 17 and our boder collie Izzy 2. Sadly we lost our older border Jess in January 🙁 I was diagnosed in February 2008 with smouldering MM but it became active quicker than i'd hoped for. I started with Velcade/Dex in February 2009 but didn't get as good a response as we expected so my Prof stopped it after 5 cycles. I then had my SCT in June/July 2009 but again didn't get the results we wanted..my body seemed resiliant for some reason! I then started Revlimid in November 2009 and am still on it, it's brought my PP down and i'm now in Complete Remission 🙂 Hopefully it will keep me there for a long time!!
Love n hugs Lorraine X

[JetParticipant]

Okay! In for a penny, and all that…

My name is Jet. I am 49 years young and only 3 weeks post-diagnosis.

I suffered with weird back pains throughout last summer/autumn and a rapidly decreasing appetite and disinterest in food (unheard of for me!). I got properly ill on Xmas Day, blood tests, then told I had severe kidney failure. A few weeks later I was whisked into hospital to treat hypercalcaemia (excessive calcium in my blood).

Then to answer the question of why I was hypercalcaemic, within 3 days I had a CT scan, bone marrow biopsy and 2 hours later, the MM diagnosis. Phew!!!!! I think I was lucky to have such quick-minded physicians who could diagnose me so quickly.

I am on the Myeloma XI clinical trial and am taking the newer Revvlimid, Cyclophosphamide, Dexamethasone combination. I am on week 4 of the first cycle, so no heavy drugs for one week. Hurray!!!! So far, my body seems to be responding very well to the treatment. My kidney function improved enough that I could take one dose of chemo in the first cycle. I am very happy with the Haematology team at Nottingham City Hospital. They have been very responsive, supportive and human.

I was living alone with my cat, had a job and lived quite independently. I have no children or long-term partner and none of my family live nearby, which is okay. However, I don't think I could have coped with the last 4 weeks without the minor miracle of my Dutch girlfriend, who arrived to spend a year in England two days after my MM diagnosis – the arrival was planned, the illness was not!

It was not what either of us was expecting, especially at such an early stage in our budding relationship, but so far she has become the most capable, supportive, caring, sweet, sexy, argumentative, grumpy, loving and mostly very funny carer that I could ever ask for. Let's hope she doesn't get fed up with my low energy, aches and pains, weird reactions to medication and quiet moods.

My short-term contract job as a Support Worker on an employment scheme came to an end on 28 Feb and I am now in receipt of Employment and Support Allowance. I have a huge form in fornt of me to apply for Disability Living Allowance, have applied for a Blue Disabled car badge and have received my medical exemption certificate for prescription charges. I am now officially a disabled person with a shortened lifespan. How quickly one's life can change around!

I seem to be approaching this whole experience as just that… an experience, just part of life's unexpected journey. And I never knew that I would respond in this way. It's quite a pleasant surprise to find that I actually am the positive, down-to-earth, open person my friends and family tell me I am. I don't know if this is still part of the shock, or maybe denial as suggested by Gaye, but anyway for now, that's where I'm at.

If anyone is interested, I decided to keep a blog about my experiences of living with myeloma. It is mostly a therapeutic tool for me, but I hope it's helpful to others with and without the disease: http://jetblackliving.wordpress.com/

Nice to meet you all!

[sandraParticipant]

Hi all,
My name is Sandra I am 46 and I was diagnosed in Jan 08 after reporting in to the blood doner people and being refused and sent to my doc . Like the rest of you the rest is history I was given 3 months of iron tablets and then obviously alarm bells rang with my doc ( also your wonderful one at Eastbourne Sarah !)who ordered a bmb and diagnosed me . I had CTD treatment followed by a SCT at Kings in Oct 08 . Had a very happy active 2 years then started on Vel /Dex in January this year . Luckily I have no other problems so far and have led a very normal life with my 2 kids . I also post on the under 50 site as well ! I havent been on this site as much since it changed over and like many tend not to post when life is ratteling along normally when in remission but just thought I would say hi to you all again !x

[PerkymiteParticipant]

Nice to hear from you again Sarah glad everything is going so well for you.

Kindest regards

David

[Author]

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