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
Hi Tom
At least you have more teeth than hair from the looks of your photo
I start Zometa in two weeks , after three old teeth out last Monday, I was saving them for my old age but they had to go
Start my 6 th CDT cycle this Weds
Fish & chips instead of steak & chips for a few days
Such is life
Peter
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
Hi Tom
Did you have any side effects from your Zometa , I start mine on Mon am, but have booked meetings later in the day , unless it makes me feel off ?
Keep going upwards
Peter
Hi Louise
I am on the CDT treatment , steroids are great, not so good when you come down after four hyper days, do all my jobs on steroid days
Bet he loved the bone marrow sample , from hip ?
I also inject, sounds a bit dramatic, but dead easy & painless , pinch belly & stab ! Helps to be well padded !
My specialist gave me a coloured idiot proof bar chart re the daily pill dosage which alters all the time , I take all the cancer drugs but Thalidomide before lunch, then Thalidomide later after tea, say 9 pm then inject @ 10/11 pm
I take one 30/40 mins before breakfast & one anti sick with each meal whether I need it or not , just makes the routine easier to take it
You just need to get into the routine
If it will help send me your e mail to : peter@peterjstevenson.co.uk.
I will scan my bar chart & send to you as a crib
Keep up the positive bit
All the best
Peter
Hi David
This men's hair business is serious stuff
How far down does this hair loss go then ?
Still got good crop on top , beard, hairy arms & very hairy chest & back, not going further down than that lot !
Not got any gold to bury in the hair, not quite ready for a bra, need corset to cope with increasing weight as this lot makes me more greedy than normal , which is pretty greedy anyway !
I have been watched re PSA for many years as Dad died of prostrate cancer & Brother had the full monty in 1995 , but they left small amount of cancerious tissue which requires hormones on a regular basis
I think my steroids kicked up my PSA, so had MRI scan two weeks ago which came back clear & PSA dropped a little, not that high anyway 18 down to 11
Kind regards
Peter
Hi Tom
When I was an apprentice we used to call the works manager who was as bald as a. Badger, chrome dome
I was once very ginger, with matching ginger beard & temper to go with it
Now I am more grey to white, small sign of old age, lost the temper bit as well
Maybe if it all falls out it will come back thick & ginger, one can only hope
Nobody else in our family is ginger, makes one wonder what my Mother was up to !
Peter
Hi Tom
They should use your chrome dome to test all these miracle hair growth cures , then when it has come back , god knows what colour, dry , you can test all the magic chemicals to keep it as shown on adverts
Onwards & upwards could be your hair
Notice I cracked the pic, job
Kind regards
Peter
Hi Garry
My iPad. Missed numbers out or I did ! Finish 5th cycle on 17 th. Oct. then 6 th. & last cycle, after the 4 th. cycle my PP was down from 46 to 5, zero here we come , I hope !
Had three teeth out today in readiness for the Zometa treatment ,relatively painless. start in next 2/3 weeks
I have not as yet been offered or put forward for any trials, not sure if I should ask but I will take it up with my specialist on 17 th. Oct visit.
Depending on where you live you have a choice of two local groups, I am going to the Bury group , nearest to me as I live approx. 6 miles east of Clitheroe, spent a lot of time on business in the Selby area over many years
Asi i posted to your Daughter the USA site has good write ups on your particular condition
Avoid web sites like the plague
I got a good info book from Macmillan , doesn't mention your condition but might be worth a call , as I said knowledge is all important
Started 4 days of steroids today @ 7-30 am , by 2pm I felt great, very hyper, rambo with attitude , good do fast walk, before legs were not happy, all arthritic bits disappear, i sweat a lot, hooked on sweet foods , mind you i was pre M M ! then by Sun I will feel crap , but bubble up again over two or three days, to slow walk & not a lot of energy
My eyesight has gone a bit hazy & my hearing a bit worse, considering I wear hearing aids this is a pain
, would be nice to stay on some steroid dose after my chemo. finishes, my Mother in Law , now 91,has a small dose of steroids many years ago , kept her going , then they took her off them & she fell apart so to speak
I find from time to time my energy just drains away suddenly, I sit down , have nap & all I well after a bit of a rest,
Stick at it
Kind regards
Peter
Hi Louise
You Dad &I have some simaralities, I am 70, still working, now part time since the advent of MM
My family are being incredibly supportive, very stressful for my Wife, I have a Daughter of 47 & a On of 40, plus a mixed bag of 5 grand kids . Luckily I am a very laid back , non worrying type
I have had to cut out all the long distance travelling I used to do
I like your Dad was diagnosed after a routine blood test for my PSA, the Docs practice nurse decided to do a full blood test rather than just the PSA , this revealed I was anaemic , also there were some unexplained proteins in there as well ! My Doc had the presence of mind to send me straight away to Heamatologist for full tests, then on to specialist who confirmed I had MM. Luckily found very early so I am stage 1
I am on the CTD treatment, 6 x 3 week cycles. I finish my thcycle in10 days
My PP level pre treatment was 46, after the th cycle it was down to 5, 2 more to go, the nearer zero the better, I hope to have my SCT at Christies in Jan
Side effects are minimal, which makes me a lucky bunny
Do not trol the web, many sites are years old, 7 or 8 years ago the prognosis was grim , you got about 12 months ,you will worry yourself to death, since then huge strides in treatment have been made & a raft of new drugs are coming out all the time
Stick with the Myeloma UK web site, the USA site , International Myeloma Foundation is very good , sign up to both of these
The USA site has a good write up on your Dads condition
What was your Dads high level PP at ?
Go to a Myeloma info day , they are very good, meet patients & very good speakers, also find your nearest support group & go to their meetings, call the Myeloma hepline
where do you live ?
The most important thing is to stay positive come what may! Knowledge is all, do your research
Tell your Dad not to let the b—- r get him down , just because we are 70 does not mean crawl into a corner & give up , I have told my specialist that if She does not get me to the Queens telegram She is sacked!
All the best from another OAP
Peter
Hi Chris
I have read the Info sheet on biphosphonates, if on them forever I presume that' a pill can be taken rather than monthly hospital visits, I will take this up with my specialist next visit.
In the States two years seems to be max time.As long as I get another 20/30 years drawing my pension I am not too bothered!
I am being treated at the BMI hospital near Blackburn , god bless my Dad for joining BUPA , we have cost them a fortune this last few years
My specialist is Dr. Rokicka, who hopefully has got me under control , at the end of my 5th cycle in 10 days time I start Zometa & will get briefed on the SCT procedures
The sooner the better, then normal service , I hope , can be resumed
How did they sort out your fractured vertebrae
Peter
Hi again Chris
As a PS
How long did it take for the effects of The CTD to drain out of your system when you finished your final cycle
Peter
Hi Chris
I would be interested to see how you get on at Christies, fingers crossed for you !
You must be about my age ( 70 , but keep it to yourself ) but luckily still fit , with most of my faculties still intact ,working hard part time . So they have put me up for the SCT hopefully in Jan
Just started my 5th cycle of CTD, going well PP now at 5 down from 46 pre treatment
About to have to old teeth removed then going onto Zomita, not sure for how long
Good luck
Peter
Hi Nicola
I am only 3 years younger than your Dad, I was diagnosed MM inMay this year, now just started my 5th cycle of CTD,
Heading I hope for a SCT in Jan at Cristies Manchesrer
My Wife & I attended the Manchester info day last Sat, met lots of people & learnt a lot
If they have one near you go to it, take your Mum & Dad
I also get a lot of good info from the International Myeloma Foundation in, the USA
There is a good write up on free light chains . Understanding serum free light chain assays
Basically two types of light chain, Kappa, normal level should be , 3 .3 to 19.4 mg/l
Then Lamda , normal level , 5.71 to 26.3 mg/ l
The Kapoa/ Lamda ratio should be 0.26 to 1.65
Theysaya normal ratio ida very good remission & is termed , stringent complete response
Get your Dad to stay positive , it's the only way !
All the best
Peter
As an older male still with all my own hair & a beard, silly question time !
Will I loose my hair when I have my SCT, from the posts it appears that this will go, not too bothered , it may grow back
What about the beard, that hides my weak chin, so says the wife, will the beard fall onto the bed sheets ?
Peter James
