anyone in the swog 0307 study? (bisphosphonates and bone mets)

butterfly343

Hi all,
I've finished my chemo and am in my 3rd out of 6 weeks of rads. My Onc asked me to be in this study to use bone stregenthers to prevent cancer from reoccuring in bones later. I am wondering if anyone else is in this study, what arm are you taking, how is it making you feel and what are the side effects?
Any insight would be welcome.
Thanks in advance,
Julie

carkris

congrats on finishing your
congrats on finishing your chemo and being almost doen with rads. i dont know much about it but my onc mentioned it says its worthwhile because it can reduce your chances by 30 percent which in his book is a great stat. i think I've read about other people on this who have received it/

CypressCynthia

not in study
I just had a recurrence in my ribs after a remission of 22 years. I am now on zometa (IV bisphosphonate) and arimidex. The study makes sense and I wish I had had the option. It sounds like a study that could be helpful. Good luck with whatever you decide!

mickeymom

Me too!
Hi Julie, I'm so glad you asked this question. I am also finished with chemo and am on day 15 of rads. My oncologist's office called today to schedule an appointment so I can come in to hear about this trial too. They didn't want to give me all the details on the phone (that's what the appointment is for!) but I was able to read a little bit about it on the National Institute of Health website. I was a little worried about the side effects too. I don't see her until the 24th, but I'd love to hear anything else you learn.

Thanks for the comments so far everyone!

e_hope

I am...
I am in the Boneva
I am...

I am in the Boneva arm (okay most likely spelled that wrong)... and I haven't had any side effects.. LOL.. at least that I have noticed. I started on the trail when I was still on chemo and I just finished rad last week. The only thing is you have to have some extra blood work.. after all we been through that's no big deal....

I think its a great trail.. and hoping it proves effective.. let us know if you take part.. and what arm you get..

meena1

e_hope said:

I am...
I am in the Boneva
I am...

I am in the Boneva arm (okay most likely spelled that wrong)... and I haven't had any side effects.. LOL.. at least that I have noticed. I started on the trail when I was still on chemo and I just finished rad last week. The only thing is you have to have some extra blood work.. after all we been through that's no big deal....

I think its a great trail.. and hoping it proves effective.. let us know if you take part.. and what arm you get..

I had bone mets, i am
I had bone mets, i am getting Zometa monthly intravenously. I have read new information that this may prevent cancer from reoccuring but my oncologist has never mentioned it to me

Eil4186

I am in that study. I took
I am in that study. I took 1600 mgs. of clodronate for three years(finished in June). I really didn't have any side effects. However my blood counts were still low 7 months after chemo. My onc thought it was the clodronate and took me off of it for 4 weeks. My counts went up and I went back on the drug.

All in all it was ok. It offers a little more protection I think. Apparently, it creates a hostile environment for cancer cells in the bone marrow. You should be aware of the risk of developing osteonecrosis. I googled it and couldn't sleep for 2 nights. But it is mostly seen in patients with poor oral hygeine and those that get a lot of invasive dental work.

mlmjt1

Hi Butterfly
I was just asked to go on the clinical trial 3 wks ago and need to let my oncologist know this week; It sounds interesting; Anyone have any trouble with insurance paying for the extra labs etc???

Thanks
Linda T

e_hope

mlmjt1 said:

Hi Butterfly
I was just asked to go on the clinical trial 3 wks ago and need to let my oncologist know this week; It sounds interesting; Anyone have any trouble with insurance paying for the extra labs etc???

Thanks
Linda T

no all the labs have been
no all the labs have been paid for by my insurance.. and I get my medication pills for free because of it not being FDA approved for this use.. I believe the IV arm of the study, your insurance will have to pay for that drug unlike the pill arms which are provided free of charge..

New Flower

e_hope said:

I am...
I am in the Boneva
I am...

I am in the Boneva arm (okay most likely spelled that wrong)... and I haven't had any side effects.. LOL.. at least that I have noticed. I started on the trail when I was still on chemo and I just finished rad last week. The only thing is you have to have some extra blood work.. after all we been through that's no big deal....

I think its a great trail.. and hoping it proves effective.. let us know if you take part.. and what arm you get..

Thanks everyone
for the information. I will ask my oncologist on my next visit.

Jeanne D

Hey Julie
I haven't seen you post in a long time, so, it is good to see you back on. I haven't been on too much myself, but, smiled when I saw your name. The study sounds interesting. Let us know what you decide to do and good luck to you!

Love, Jeanne ♥

CypressCynthia

PS
Thank you so much for posting the info about the study. I immediately contacted my 2 sisters who are also battling breast cancer, but are both in remission. They are too late for the study, but since both are post menopausal and bone density is an issue, they are going to try and get on a bisphosphonate. Who knows, your post may save them from the bone mets that I am fighting. Wouldn't that be something?!

contrail

Bisphosphonates Trial
I completed chemo on May 6th and was asked to take part in the Trial. I read everything I could on the subject and was almost ready to say no, when I met a woman in the radiation waiting room. She had been in remission for ten years, when it returned as bone cancer. That convinced me to take part in the trial. I had to have a dental exam before they would accept me, and that came back fine. I was randomized into the Zometa arm of the study. I still had my port in, so all of my blood tests and infusions have been through that. I'm having the last monthly infusion on the 18th of this month, then I go in on a quarterly basis for the next two and a half years. I haven't had any real problems with the Zometa other than some bones aches and pains for a few days after the infusion. My biggest problem with the study was going back to the infusion clinic for the infusions. That was a bad de ja vu (spelling), but the nurses and techs have been great and they all remembered me from my chemo days. I'm very glad I am in the trial and I think if you have the opportunity to do this, you should. Please let us know how things go, and which arm of the study you are in. Best of Luck! Connie

Bev1969

e_hope said:

no all the labs have been
no all the labs have been paid for by my insurance.. and I get my medication pills for free because of it not being FDA approved for this use.. I believe the IV arm of the study, your insurance will have to pay for that drug unlike the pill arms which are provided free of charge..

The IV drug is provided
The IV drug is provided through the trial also, but it does not pay to administer it. My oncologist told me about the trial and I filled out the papers and then they checked with my insurance company to see if they would pay the extra costs. My insurance company denied it since it is a trial. I figured it would cost $5,000 over the life of the trial and that was at today's prices and didn't include any extra labs, etc. So, I declined. I still don't know if that was a good decision. I guess only time will tell.