Zometa Outcome

Good Evening Yolanda;

I'm beginning to understand the necessity to at least think strongly about taking this next step.

ZOMETA is a once a month I. V. drip for me combined with my chemo visit.

I understand the jaw complications and my dentist has given the ok since my teeth and oral make-up are fine.

This is the biggest side effect concern. However, you must avoid any future extractions or bone exposure as this can cause the "dead jaw" you are reading about. From what I've read, ZOMETA stays active for 11 years in the body.

-Can I expect my hair falling out?

I haven't experienced this.

-Getting bloated in the face?

I haven't experienced this.

I know about the flu-like symptoms.

I haven't experienced this. 

I've experienced nothing bad while taking it and have been on it for nearly two years.

Take care;

Kevin

Hi Yolanda~~

Seriously consider the Aridia option.  Like Mike, I was put on to Aridia 6 years ago and stayed on it every month for over 2 years.  During that time I was actually hit by a car and although I was thrown up and over the front and onto the highway, not one bone in my body was broken!  Given that I have leisions on every bone in my body, the oncologist and staff were totally amazed at how strong my bones actually were.

After that I decided to go off of the Aridia because of the fear of ONJ (as I'd been on it for almost 3 years) and stayed off for the following two years. Recently I had another MRI done and my bones now appear to be 'crumbling' so I was advised to go back on it again and I've agreed to do it every three months.  I get no side effects from Aridia and the medical reports all say that the liklihood of ONJ is much lower than with Zometa.  As was said in an earlier email, because Zometa is so much faster to give, hospitals prefer to use it because they can get far more people through the system each day.  I have read that Aridia is even better if it is given more slowly, so now I have arranged for my Aridia to be given over a three hour period.  Its no big deal really, I mean if they are going to put in an IV who cares whether its for 15 minutes or for 3 hours -- just bring along a good book or a set of puzzles and enjoy some 'time out'!!  Good luck with your decision making.  These things really do work, and when the bones start crumbling, well, there really is no other option!!  Cheers, Cath

Thank you Stu, Mike, and Cath,

Again, more details to help my decision along. This past weekend was a painful one for me, so I'll assume the MM cells are doing more damage in what they do. I'm really considering treatment in 2 weeks, because this is not fun whatsoever! But I will bring up about Aridia and see what excuse my doctor comes with in adminstering this.

I'll let you know how this goes.

Thanks a bunch :)

Hi Yolanda:

It is a hard call to make about the Aerida/Zometa - all different opinions and cases to look at, listen to, etc.

I am an MM patient 12 years out.  I started Aerida at the very beginning and like others found the treatment to be wonderful for me.  First, hardly any bone pain.  2) Going through a number of falls I didn't break any bones - a miracle the doctor said.  One incident I did break  a bone - straight through a leison - and to everyone's amazement, the bone healed.  I swear it was because of the Zometa.  Every month for 9 years.  BUT THEN CAME THE KLINKER....two root cnals which wouldn't/havn't healed to this day and this is 4 years out.  My Onc said to stop the Zometa immediately, but we continued witha treatment every three months.  THEN a massive infection, trips to the dentist and dental surgeon and everyone agreeing that I do have ONJ and no more Zometa.  Now the MM is active again, I'm back with bone pain, on Velcade /Dex and would love to try Zometa, but everyone says no way.  Yes, you should get all the dental work done now ...especially if you're considering any extrations. The dentist didn't pull any of my teeth but ground them down to the gumline and that seems to be working fine.  But I can't get any partials or dentures because theyre afraid they will aggreviate the gums.  It's a wonder drug- but can be a devil in disguise, so think about it carefully.  Maybe start on a quarterly basis andsee what happens.

As to hair loss - never happened.  I waited and waited- nope!

Facial swelling - nope, none of that either/

Flue-like symptoms/fever - oh yes, like clockwork - 6-7 hours afterwards I was in bed and stayed there for about 12 hours.  Then up and out and that was it.

I wish you good luck in your decision and hope it works wonders for you.

I have a placque that says What Doesn't Kill You Makes You Stronger".  Sometimes I believe it - but other time s- no way.

I have  - FINALLY - started to take one week (not day) at a time and seem to be handling things better.  The "day" is too short and rolls over into other days, so I plan out my week and go from there.  The two weeks when I'm treatment free - boy, do I play catchup.

Again, good luck - feel good - have faith = and remember, we are all stronger than this Damn"C"

Maryann