As an avid reader of the posts, I was luckily diagnosed by a chance from a routine unconnected blood test & my doc said , did you know you were anaemic , as if you would !plus he did not like other bits inthe sample, so quickly to Heamatologist who did all the tests but skated round the word cancer for some reason , he mentioned myeloma & I thought I had got skin cancer , never heard of MM
Then to my specialist for proof positive via bone marrow from hip , done what felt like a brace & bit
Some articles infer that it is a disease for older people , but from the posts a lot of writers are a lot younger than me
& have joined our merry club
Most seem to have been undiagnosed until disaster struck
Some like me can consider ourselves very lucky that we were caught early, more by good luck than medical science
Some clues like back or hip pains can apply to anyone over 50 getting a bit creaky
Either way to quote a friend of mine , we are where we are !
It would seem that many roads lead to MM
Peter
Hi Scott
Second post from me in as many minutes
You need the Heamatologist ASAP
My Doc went over my blood test & straight away sent me to a Heamatologist . My PP level was at 46 pre treatment
He took what felt like several milk bottles full of blood & had me X rayed from scull to ankles
He analysed every facet of the blood & churned out copious notes for my specialist who is now in charge of my treatment
She in turn took a bone marrow sample from my hip , which was the confirmation that I had MM
Press on , quickly !
Kind regards
Peter
Hi Scott
I was diagnosed MM at the end of May this year, stage one thanks to a sharp eyed practice nurse who took my routine PSA blood test, did a full blood test not just the PSA one, found I was anaemic , as soon as the Doc told me this .
With My family being cancerous i knew I had a problem , which after about three weeks of tests MM was confirmed & my six x three week cycles of CDT with hopefully a SCT in Jan started
On diagnosis ,like you I dashed home & hit the Internet , first one up , prognosis about 12 months left to me , I nearly died of shock there & then , Son pulled me up , saying you never know how old those sites are , seven or eight years ago that was the prognosis, but giant strides in the treatment have been made since then ,
Abandon the web , stick with UK Myeloma , go to a local info day, i am going to the Manchester one in Sept ,also the American site has good write up on latest drugs etc which come to the UK
I am determined as a very positive person not to let this beast take over my life , so I lock it in a box & get on with my life
Some days I do feel a bit off but persevere, do not give up, grab life in both hands
Get to know your nurses & specialist , take list of questions with you & go over every result with them so you understand it
My Wife & family are giving me superb support & my hospital team are first class
I agree with you ,once you are in the cancer club it's amazing how many around you are in it & you never knew
I would guess that I am a lot older than you but I am determined to get to the stage where the Queen sends me a birthday card !
You will find heaps of advice on this forum, not as depressing as old web sites !
The long & short of it , get positive , live your life , just let the MM beast out now & again rather than ruling you 24/7: IE , don't let the b—- r get you down, there is still life out there
Kind regards
Peter
Hi Tom
Got my third cycle result today , pp at 8 , not sure if that's good or very good for number three cycle
BUPA is a definate bonus, I had some spinal ops at the Alexander Hospital in Cheadle Ches, this last few years
Just like being at the Hilton , lovely large very clean rooms great food, every whim attended to , sad to be kicked out home
Now with MM i will cost them a bob or two !
Just checking the thousands of great mug shots to show one where I look younger than you, you can't be s day over 60
You have a boss Who is an absolute star, nice that someone is prepared To go the extra mile, he deserves a medal
Would that they were all like that
Kind regards
Peter
Hi Tom
My specialist said as long as it was wet , drink it , now a dedicated drinker , was anyway!
Like you I was diagnosed by accident but at stage 1, little or no bone damage
Also very lucky to have been in BUPA since i was a spotty teenager, god bless my Dad !
Although I have claimed that much in the last few years, I'm surprised they haven't had me put down
Still managing to do the work that I really enjoy, but I have cut out all the long distance driving
Taken to CDT like duck to water, just started today on 4th cycle should get third cycle results tomorrow
If I put my mug shot up no laughing , I reckon you are a lot younger than me !
I find all the postings a great help & see to be in very good star company
All the best to our merry band
Peter
Hi Wendy
Your account of the SCT is the best i have read, all info gratefully received
I am just finishing the third of six cycles, all seems to be going well ,no particular problems with the CDT i am on
Being teed up for my SCT at Christies in Jan
I am going to the MM 22 ndSept day at Radisson,ManchesterAirport, more than interested in all the latest research news.
As with all of us in this rarified society I hope that research leads to a cure in the next few short years, then we can all celebrate
Optimistic is my middle name , I hope I can do as well as you
Kind regards
Peter
Hi David
Only diagnosed with MM this June, but have had my PSA monitored for many years with two or three biopsies
Prostate Cancer is our family Achilles heel
My PSA varies up& down all the time ,never more than 10 , but since I have been on the CDTregime it's gone slowly up without any dipping down,, just finishing my third cycle , the reading went upfrom11 to 18 in three weeks, compared to some I believe this is still a low reading , but they like the readings going up & down
My Doc thinks the MM drugs could be having a effect on the prostate , did you get any info on this
Seeing my ecologist on Mon for advice etc
Kind regards
Peter
Hi John
Very interesting to read your post, I hope I can get at leastv12 years
Diagnosed in June this year, just finished my 2nd of 6 cycles of CDT, PP down from. 46 to 10 which I think is quite good, SCT I hope in Jan @ Christies
I'm just a young 70 & still work ad a consultant engineer for a large laundry group with 40 laundries from IoW to Glasgow
I have to be available 24/7 but for 3 days per year" done this for the last 40 years
I hugely enjoy the work & have no intention of giving up, due to me having a series of spinal ops , I passed the legal / contractual side of the business nearly three years ago to an Engineering friend I have grown up with
Until 12 months ago I was driving 50000 miles per year, but can now do most of the work from home, although I like getting out & about
Compared to lots of other posts I seem to be having a very easy ride with my drugs
I have had some stomach gripes , a toilet within 6 m was very useful, immodium was very good , one very down day last week after 4 days of steroids finished.
I am fairly large, but very placid but steroids turn me into Rambo with attitude, also get rid of all my arthritic bits
I sleep very well , eat like a pig , completely addicted to plain chocolate digestives, cookies , cake & pretty much anything else
Fish & chips three times / day would also be very nice
I guess with your job you are on duty 12 hours per day 7 days per week, presume it may slow down at the end of the season , but I can fully understand if you have an off day that makes life difficult with a busy business
Luckily I was diagnosed before the beast started eating my bones away, although my lower spine is bolted together with stainless plates , so that ain't going to collapse
But my wife & I have decided to slow down, spend the money , until all gone & then give ourselves to the state
I am going to the Manchester open day 22 NDT Sept, my main interest will be in research , where are we at with a drug that will put us all into permanent remission, how far off is this , the progress seems to have been immense this last 7 or 8 years
Very interesting to hear from someone who has been in remission for so long
All the best
Peter
Hi Ozzy
I was diagnosed in June this year , my PP was 46
After the first two cycles it has dropped to 10 which I think / hope is pretty good with four more cycles of CDT to finish
Then an SCT at Christies in Jan
What I cannot seem to find out is what is classed as a good result , you are at 4 , I have read posts of 1 or zero
Zero is oviousley the the best
I have signed up to the Manchester Myeloma open day on 22 nd Sept . Hopefully to discuss this point & where research is leading to some pont in , for us , the near future for the magic bullet ,which will be the final cure drug , one has to be optimistic
All the best
Peter
Hi Vicki & Colin
I was diagnosed with MM this June, again by accident from an unconnected blood test for my PSA
I have to say steroids are great , all my arthitic pains go, also get somewhat hyper/ aggressive, god help anyone who cuts me up on the road!
Then for the following two days after steroids, tired & rundown , but all in a good cause
I find masses of plain choc digestives helps, washed down with cake & ice cream
Just started my third cycle of CTD, to date PP down from 46 to 10, which i hope is good.
I don't get hicupps, just diabolical wind , doesn't bother me but my family are about to evict me.
The main down side for me is my PSA reading which has been up & down for many years, but never more than 11, has gone up to 18 in the last three weeks,any male got experience of this ?
All the best
Peter
Hi Tom
I was told to drink 3l per day of anything that was wet, so two or three beers & several reds gets me well on to the target
On a more serious note reading the many postings from people who have been diagnosed disastrously late , who now need new hips or or well past stage one
In my case there were on or two clues over the last 12 months but no one picked them up & I think I was very lucky for my early diagnosis
But a lot of other people some very much younger than me seem to have slipped through the net, that's if there is a net
Seems a shame in this hi Tec age , quicker diagnostics are not to hand with this very insidious disease
Must try & get my mug shot on
Peter
Hi Michele
I now stick to Myeloma Uk & the USA lot
Also signed up to the Manchester Radisson Hotel open day on 22 nd Sept, where I hope to pick up a lot of info & advice
I' ve said to my family , if the Taliban find a cure in Helmand province I would be there tomorrow, failing that the radisson will do
Best wishes
Peter
As a newly joined member of the MM society. i was diagnosed with MM in June this year.By a stroke of good fortune if that is the right word a routine blood test unconnected with MM showed i was anaemic which was enough my Doctor to send me off to see a specialist who made sure i was anaemic by draining off yet more blood every time he set eyes on me, also X rayed every bone in my body . then he was sure i had Myeloma , but for some reason fenced around the word cancer. Next day i saw my excellant consultant gastroenterologist. who after drilling into my rear end with a brace & bit announced i really had MM .Luckily due to my doctor, i am at stage one.
Took a few days for this to sink in but then common sense kicked in & thought stuff it i am going to beat this come what may. Now just started my 3rd cycle of 6. Then looks like a SCT in Jan at Christies.
I am responding well to the poison ( CTA, DEX & Thalidomide) i am chucking down my throat with few side effects. I like the steroids, they get rid of all my arthitic bits for four days ! Also turns my from nice placid old guy to Rambo with attitude
My wife understandibly was very stunned with the news but is giving me superb support along with family & friends. The hospital team are also marvelous.
I am now researching all the new treatments etc coming along & very interested to see how other people cope / get on with their treatments . lots of them seem very much worse than me , so in a way i feel very lucky with my early diagnosis
So we try to lead a normal life & not let this pirana as i call it interfere with our lives as little as possible, although being very careful to avoid infections
So still working part time, well past sell by date & bus pass era
Peter
