One patient with glioblastoma still alive nine years later
by DebJr on Sun Jun 20, 2010 11:17 PM
Hello all & happy father's day.
Wanted to get some feedback, on your invidual experiences with Aredia (or Zometa, if it applies). Mainly - for those who have received it, how long did you get it for? And are you still getting it?
My dad (for those who don't know - almost 80 yrs old with MM iga, Stage III, bone damage only) has been in treatment now for close to 3 years. Except for the beginning upon diagnosis, he has been "stable" for most of this time. Not in remission, but always mere points away, etc. He received monthly iv infusions of Aredia - for the first two years. (i should also point out that his treatment is velcade once a week, for 4 weeks in a row, and then has 3 weeks off). So technically, that would have been Aredia about every 6 weeks or so, for a period of 2 years.
Last September, when he returned to the dentist after not having gone in some time (he needed a new bridge/dentures) - his cheek/gum became swollen and then the dentist said he had an infection and so he took antibiotics for a week. Being the neurotic that i am, i immediately was worried that he came down with ONJ (deadjaw) and that these were symptoms, so i had them stop the Aredia immediately. It turned out to be all minor, the dentist concluded that it was a 'root gone bad' - and said that if it flared up again, he would have to see an oral surgeon down the road. (the swelling & irriation then went away). Since i wasn't sure about the infection (or possible dead jaw scare at the time) - we just continued to halt the Aredia... just in case he needed work done on that root/gum. He did not and his mouth/teeth have been uneventful since... except for the 4 (and only) teeth he has left on the bottom, some of which are loose. My dad always says he wants them pulled out, etc - and i explain to him why they cannot (but he doesn't really understand). Anyway, he's been off the Aredia for over 10 months now, and i think the doctor's office asked about it a few weeks ago - i think they might want to start it again & asked about the dental situation.
My question is - is 2 years of Aredia enough? Or is it usually ongoing & ongoing... I think he could probably benefit from it - it really seemed to help him in the beginning (plus he has a lot of hip pain and almost zero cartilidge remaining in the left hip). But i keep hearing about so many case of the osteonecrosis (ONJ dead jaw) that i'm a little weary. on an added note, his latest MRI shows that he also has necrosis in his left hip. Seems like the gum scare last summer was just a brief coincidence, but i'm just wondering what is recommended regarding the bone strengtheners. Again, he was on it for about 2 years, and now has had almost a year off from it. If anyone could share their experiences or opinions, i would appreciate it.
by Hophop4 on Mon Jun 21, 2010 02:44 AM
I started on Aredia in March 2007 once a month until I went in to have my stem cell transplant March 2009. Three months after the transplant I had followup tests including the bone density to see how my bones are. My doctor said he didn't want me on the Aredia more than 2 years unless it was totally necessary because staying on it longer can cause other problems with organs. As it turned out my bones looked good and I have been off it now for 15 months.
by Windymoose50 on Mon Jun 21, 2010 03:23 AM
I have osteonecrosis in my left hip and have had neither Aredia or Zometa type drugs..... Just think it makes your Dad and I at risk for fractured hip. Gayle
by DebJr on Mon Jun 21, 2010 11:56 AM
thanks, gayle. did they do anything about the necrosis in your hip, or they can't? i know they said some people have surgery (new hip?), some just take pain meds, some do both. i'm supposed to take that latest pelvic mri disc & make an appt to see the ortho, but have not gotten around to it yet.
<< Just think it makes your Dad and I at risk for fractured hip>> - gayle, how so?
although i wasn't at that particular dr's visit, i think they asked about it because they were thinking of starting the Aredia again... but not sure what i'm going to do. aside from the onj developing - what are other risks of it? (ps - the whole time he was getting it, he had no side effects)
by K_C_1 on Mon Jun 21, 2010 12:26 PM
Good Morning Deb;
Happy Father's Day.
Thank you! No tie this year.
Mainly - for those who have received it, how long did you get it for? And are you still getting it?
I was on ZOMETA, monthly for almost 2 years. Had some minor oral work performed so they took me off of it and I've not been receiving it for almost 6 months.
My question is - is 2 years of Aredia enough? Or is it usually ongoing & ongoing.
I was told by my oral surgeon that this stuff remains in the body for 11 years! My Onc. Dr. informed me that it only stays on the surface that long but internally must be replenished after a few weeks.
If anyone could share their experiences or opinions.
I've had 2 full skeletal x-rays and the last one showed NO deterioration from the first. This stuff works! But tread lightly as ONJ is a reality!
by onelifetolive on Mon Jun 21, 2010 06:47 PM
My husband was on both Aredia and Zometa. He started off with Aredia in Aug 2007 then changed to Zometa and March 2010 was his last dose. Never had any side effects or any problems with either drug. They said his bones are good and strong and no longer needs it.
by Anna9563 on Mon Jun 21, 2010 08:25 PM
Hi DebJr. Don't know if read posts I did a while back. Dad took both Aaredia & Zometa off and on for about 6 years. I think it was that long. He ended up with dead jaw. He had 2 root canals done that we found out later were unnecessary. He had loose teeth and kept getting sick. Don't want to scare you but they had to remove all of his on the left lower side of his mouth and part of his jaw. Of course he no longer takes either on. He said that was a very painful operation when they removed part of his jaw. I wouldn't go back on it if I were him. That is just my 2 cents.
by IdaDome on Mon Jun 21, 2010 09:15 PM
I started on Aredia shortly after being diagnosed in July 2006. They switched me to Zometa in Dec. 2006 or Jan. 2007. I received it monthly until about a year ago (3 years total). Now I am getting it quarterly. I have a lot of bone damage and pain and I think they are being cautious to prevent more damage.
I have had no signs of ONJ or other obvious side effects. I have been having more hip pain lately and should probably get that checked out.
These drugs will not help with cartilidge loss. If he has necrosis in his hip, it may be best to stay away from them. Has he had a bone density test done lately?
Hope things work out well for him.
by DebJr on Tue Jun 22, 2010 12:35 AM
Regarding my dad's MM, upon diagnosis, he had bone involvement - the lesions (just a few) were only in his hip/pelvic area - both sides, and they were big. None on his spine or anywhere else... although at the time he did have a compression spine fracture, but that healed itself in a couple of months. Since then (almost three years later) - he has never had a relapse and he has no new lesions since. But he does have that left hip pain and it seems to be flaring up again, most specifically when he first gets up out of the chair or starts walking... i'm guessing that pain is combination, arthritis and the necrosis in the hip.
No, he has not had a bone density test lately... and truthfully, i can't recall when he has ever had one. Is that something that his oncologist would have given him, or your primary doctor? What does it entail? Thanks for the info - that's one thing i really wanted to know about also... if the Aredia would help (or not) with the cartilidge loss.
by Hophop4 on Tue Jun 22, 2010 01:15 AM
The Bone Density (DEXA) Study is where you lay on the table and the machine scans over your body. With me they did it in 3 sections and it was really fast. I think this is new and more accurate. The older Bone Density Scans were with xray plates from head to toe and took forever. The oncologist should request this.
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