Hi Debs,I start my second cycle of Velcade+Dex on Friday after 10,days rest.
I have my next shot of Zometa on 14th Feb so I'll be montoring the situation to see if that might be the problem.
Either way I'm determined to get to the bottom of it.
I'm also going to have a chat with the Nurse when I go on Friday.
Take care…Keith.
Hi David,well I can't take any credit for this one.
It was there before going to bed and gone the next morning.
I'm pretty sure that the Zometa was to blame rather than the Velcade.
I'm due my monthly shot a week next Monday so I only hope it does'nt return after the injection.
When I go to the Hospital on Friday I will mention it to the Nurse.
Thank's David.
Keith.
Hello hooray it's gone……..
Now I can taste proper,well sort of.
Keith.
Hi David,My PP was at 28 when first diagnosed then was undetectable after SCT and remained so for more than 2yrs until relapse when it was at 7.
Statistics mean little as we all know MM is a very individual disease that effects different people in different ways.
Here's another statistic to baffle you…MM is hardly known in India/Pakistan and the people of these countries have in the main a different blood group to most of us in Europe and the USA.
Now is this because of the blood group it'self or the diet and conditions they live under or a combination of both?
The mind boggles and the only certainty I know is I start my 2nd Cycle of Velcade on Friday and good old Dex,what would I do without him?
Happy days are here again…….
Keep on researching dear friend…Keith.
Hello Sylvia,I ended up with a collapsed vertebrae just before being diagnosed in Dec 2007.
I was given RT before my Chemo treatment started Jan 2008 which did improve things after a period of around 6,weeks.
I suffered 2,months of agony after the MM relaspsed late last year and have just finished my first of 8,cycles of Velcade+Dex and did notice that within the first week of the new treatment most of the pain had eased off.
The consultant told me at the time of the collapse that they do prefer to try a non evasive procedure ie:-RT before going down the surgery route.
Excellent results can be achieved with this approach but of course it does depend on the Consultant and more importantly the condition of the patient.
Either way I do hope things get sorted out quick for you as all of us know how painful and Debilitating a collapsed Vertebrae can be.
Best of luck Sylvia…Keith.
It's the same with me,everything tastes much of a muchness.
I noticed it within a week of starting Zometa so it looks the likely reason.
My appitite is too good if anything but not really enjoyable.
I totally abstained from Alcohol during my last treatment and have done so this time also so as to give the drugs a chance to work.
I really enjoy a good red wine but I can always play catch-up when this horrible disease is kicked out of my system.
I've found a couple of decent non-alcoholic wines…well I say decent maybe pleasantly acceptiple would be a more accurate description.
Take care Debs…Keith.
Hi Debs,I take the Velcade with Dex but as I took Dex with my original treatment(VAD)and did'nt notice a Salty taste I put it down to the Velcade.
Of course it could be the Zometa which I now have infused at the Hospital once a month.
One things for sure…I don't like it one bit!
Keith.
Hi Min,I hope Peter's Revlimid does the trick for him.
As for Sciatica…I have that as well as MM and had a really bad time with it 17mths ago.
MRI showed 4 bulging discs with one in particlar just above my hipbone ruptured.
I had an injection and then physio and an organised exercise plan over a period of 6,weeks.
The pain has gone but the nerve is now damaged after being trapped for 12,weeks and I'm left with a perminent numbness down the outside of my left leg.
There is an operation you can have and had the pain continued as it was then I would have had it but I can live with the numbness for now.
Take care Min and best of luck to you both.
Keith.
Best of luck Kay with your new treatment.
I relapsed recently and started Velcade+Dex 2, weeks ago and have just completed the first of 8,cycles.
When you start something new it can be daunting not knowing what side effects await but I'm sure you'll be ok with whatever they decide to go ahead with.
Stick in there and all the best!
Keith.
Hello Gaye,I too was moved as others when I read your post.
When I first found this site in Dec 2007 your posts were the ones that stuck out for me in the way they gave me hope,and after just been given the dreaded prognosis of 3-5yrs they were very instrumental in keeping me going.
After the initial shock I took it on the chin knowing that there was little point moaning and groaning as it was'nt going to go away.
I'm 3yrs in now and as you know have recently relapsed but still do my best to put it if not out, certainly at the back of my mind although the pain can make that difficult.
I have good days and not so good and some even bad ones but like everyone else on here I take each one as it comes and make the most them.
Live every day to the full is the only way I see it.
I also have the strongest support I could wish for from my wife Sue and of course my faith which kept me going through the dark days of 2008.
I know I don't have to tell you this Gaye but stay strong.
We will always be here for you as you have been for all of us.
God Bless…Keith.
Hi Kay,sorry to hear you had a painful biopsy,as if we don't have enough to contend with.
I had mine last month when a specimen of the actual bone was also taken.
Two days later I got the phone-call telling me that the MM had relapsed after 2.8yrs.
I can't honestly say I was surprised giving the pain I'd been experiencing over the 2,months prior to a Skeletal survey followed by the biopsy.
But we just have to take it on the chin and start the next phase in the battle to defeat the Monster.
Mine started, 8,cycles of Velcade+Dex 17th Jan with first cycle completed today and the next 10,days rest until it all starts over again.
I hope your outcome turns out to be better than mine but I think it's always a good idea to be prepared for the worst just in case.
Best wishes Kay and I hope all goes well for you.
Keith.
I'm sorry to hear about the pain you are suffering Gaye.
The problem is finding something that rids you of it without scrambling your brain in the process.
I use Tramadol with paracetamol when I'm at the end of my tether but like you I don't like taking anything unless I really have to.
Since starting my latest treatment(Velcade+Dex)most of the pain has now gone completely after 8 weeks constant agony.
The sooner the better you have the scan and they can pinpoint the problem then the RT should sort it out for you.
Have you started your new treatment yet and if so how is it going?
Take Care Gaye and I hope you start feeling better soon.
With this horrible disease if it's not one thing then it's another.
Keith.
Hi Tom…where did you get your toothpaste from,bet it was'nt Tesco's.
Perscription??? surely not!!
I started Zometa last Mon and I have my 3rd shot of Velcade Friday so I'll ask the nurse about it then.
I've heard of this before from a Dental Surgeon that addressed one of our support group meetings.
Thank's Tom…Keith.
Hi Phil and yes we should compare notes as the treatment is the same.
I'd been having terrible pain in my Ribs and back for 2 weeks so went in to have it checked out.
Proteins had risen to 7 from being at zero for 2yrs.
I had a skeletal survey which did show slight changes to the Rib area and a new lesion on my skull.
I then had a Bone Marrow Biopsy and also a piece of the actual Bone it'self was taken.
This showed that the MM was active and the whole Chemo thing was once again looming on the horizon.
I started my first of 8 cycles of Velcade last friday and had my second injection today with 2 more to go Fri then Mon next week to complete the first cycle.
I also started on Zometa today which will be once a month instead of good old Bonefos every morning.
I'm back with my old friend Dex complete with rosy glow and all and the appitite of a ravishing lion.
Early days but apart from the fatigue which comes in waves not too bad.
If all goes well the it will be a second SCT with the cells they have kindly kept in cold storage for me in anticipation.
I've had 2.8yrs so can't really complain.
I was wondering how you were doing and sorry that you are in the same boat but it will take more than MM to beat us.
Keep in touch mate and look after yourself…Keith.
Hi Min,Now I'm going to confuse you,I have my treatment at North tees Hospital in stockton.
I had RT at James Cook Middlesbrough but my SCT at RVI Newcastle.
Reason being although I'm Sunderland born work and then Marriage drew me to Smoggie Land lol.
Anyway if you think you have a chance of beating us dream on,wont happen.
I had absolutely brilliant treatment at the RVI,they really looked after me there and Jane Conn is lovely.
Only downside was when being discharged and I went through the doors looked up and to my horror there it was the prefabricated monstrosity they call Sid James park…sorry Min could'nt resist that one:-D
Unfortunately I can't make it in body on Sun but my heart as always will be there cheering the lads to a win.
I do hope things work out for Peter and you both get some respite from this horrible disease.
Lookafter eachother…..Keith.
