Roll Call: Anyone in the Phase III Trial of Bisphosphonates

Hood1980

Hi Marketing Mom,  I haven't noticed any SE from the clodronate.  I do bruise easily, but I always have.  I don't notice any difference.  You could discuss with your onc and they could run additional labs to include clotting factors, Pro-thrombine time, etc.  Wouldn't hurt to ask....  Best of luck & let us know what he says.

comingtoterms

Hi, I am on the 3rd arm of Ibandronate, week five.  Tammy

Hood1980

Hi Everyone,  I had my 3 month follow up with my onc for this study and all is well.  Just wanted to let you know there is another (or still the same one) clodronate shortage and was only given a 1 month supply.  How is everyone else doing?

Jaimieh

I am started clodronate about a week ago and the only thing that bothers me is not being able to eat within an hour.  I am very jealous of everyone who is able to get more than 1 months supply.   I get a 30 supply and that is IT. 

comingtoterms

Is it my imagination or does it seem like almost everyone on this thread is on clodronate?  Maybe that is why they are runninng out of it!

Lindissima

I considered enrolling in the trial because my oncologist and another onc I went to for a second opinion originally recommended it.

Though I didn't enroll in the study, (I can't take the oral forms because of their SE's), I ended up getting  a Zometa infusion  prescribed by my onc and paid for by my insurance, twice a year, as per the Austian study. My onc was very surprised and delighted that my insurance decided to pay for the Zometa, after initially turning me down.  He seemed to think they are beginning to be persuaded by the results of the various trials.

 So far, I've had only one infusion, with no SE at all.  I went to the dentist on my own  after reading these boards and got my teeth checked before the infusion.  He gave his approval, albeit a bit nervously, but said I should be checked every three months.

I am taking Arimidex because I am postmenopausal.

blackjack

Hi girls..I would like to know if anyone was give the drug Reclast instead of Zometa. I know that they are the same drug but from what I have read they have different side effects. I would  appreciate any info on this as I have to make a decision on it soon. My insurance will pay for it...but I am not sure about this IV stuff and side effects. They tell me I have early osteoporosis. Both my med onc and endo md want me to take this. Not sure I want this....so I need answers.

Thanks for your responses in advance. Hope you have a great 4th of July.

Blackjack

MarketingMom

Bluedasher - sorry, I wasn't clear in my post. I am on Tamoxifen and get a Zolodex shot monthly to suppress my ovaries (OS is ovarian suppression) - I am getting hot flashes from those, but now taking Effexor so they are not as bad. They won't be gone, but at least they are better and not keeping me up at night.  The Clodronate is not giving me any SE, surprisingly. But these bruises all of a sudden are of concern. 

Thanks Hood1980 - I am scheduled for my next (every-3-month) appt with my onc later this month, so will ask her.  I also just had a DXA scan to check my bone density - I asked for it as a baseline earlier, and my onc said they do it mainly after 6 months of being treated.  I was surprised to find out I too have early osteoporosis, despite exercising/weight bearing exercises and good calcium/D intake.  So my onc was relieved I am on Clodronate and will check bone density in a year to see if with all of this treatment, it improves. If not, she said she might switch my bisphosphonate.  So we'll see...

I was surprised to receive ~3 months' worth last month of the Clodronate, despite the shortage issue.  BTW, I take my Clodronate at night, at least an hour or two after dinner and an hour before bed, as my onc said you need to sit up.  I find this easier than delaying breakfast (or coffee!). 

knowledgeforpower

I am in the Zometa group.  I have my second infusion this morning.  I had a trip planned the day after the first infusion and didn't want to feel sick.  I asked if I could try a Claritan (I took it with my Neulasta and had no pain) to see if it would keep me from feeling achy.   I was given the OK to take it and I had no problems from the Zometa.  I took it for a couple of days afterwards as well.  I have taken one this morning.  I am also taking Aromasin and today is my last radiation therapy session!!  Hope everyone is doing well on their respective bisphosphanate.

didle20Diane

I am on the ibandronate and have taken a weeks worth so far......did anyone have achy and I mean achy joints specifically the groin/hip area?  It isn't miserable YET but when I called the research nurse she said I could take a few days off to see if it is the drug causing the symptoms OR wait it out and see if the SE's get better. 

Thanks!

Diane

Jaimieh

Has anyone else been told to take calcium while on clondrate ??  I looked up their website and recommendations for taking the medication and it says not to take with calcium.  My trial coordinator said to take it with calcium. 

bluedasher

Jaimieh, in the study, we are suppose to take calcium and vitamin D while on Clodronate, but not "with it". In other words, you aren't suppose to take the Clodronate pill at the same time of day that you take the calcium. The calcium can interfere with the absorbtion of the Clodronate if they are in your stomach at the same time. You aren't even suppose to take the Clodronate with milk. Calcium should be taken at least 2 hours after or one hour before you take the Clodronate. Is it possible that that is what the website meant?

Dawnbelle

My onco sent me info for two trials. The TailorX & bisphosphonates. I meet with her for the first time on Monday...how many trials can we do at once?

kt57

Hello:   I am on the ibandronate arm,   Been taking the drug since May and no SEs to speak of -- maybe a little "sour stomach" in the morning until I can eat something.  I was told not the eat or drink anything but water for 30 minutes after taking the ibandronate...and definately NOT anything with Calcium in it.  I was also told to take a Calcium supplement - 1200mg - daily.   I take it in the afternoon.  

bluedasher

Dawnbelle, every trial has rules for who is eligible including rules about what other treatment you can be getting. One rule for SWOG S0307 eligibility is that you have to get chemo or hormone therapy to be eligible. I think TailorX is the trial where they are testing how much chemo helps for those with moderate Oncotype results so if it applies to you, you might be randomized to not get chemo which would affect your eligibility for SWOG S0307 if you weren't getting hormone therapy.

SWOG S0307 also says:

"No concurrent enrollment in clinical trials with bone density as an endpoint

* Concurrent enrollment on any other locoregional or systemic therapy breast cancer study (including cooperative group studies) allowed"

I think that means it would allow you to be enrolled in TailorX since it has nothing to do with bone density. It is a systemic therapy breast cancer study.

But you would also have to look at the rules for TailorX to see if it allows concurrent enrollement in SWOG S0307.

TwillNW

Hi Diane -

I am exactly one week into ibandronate and haven't noticed any appreciable joint aches - if I sit for a long while I might be a bit achier when I first get up, but it goes away within a minute or so -definitely nothing that would make me think of taking pain reliever.  The only thing I've noticed that might be an ibandronate se is a tiny bit of reflux.

Tricia  

didle20Diane

Thanks Tricia, I didn't take it today and may take tomorrow off, too.  I just got the drug information from my pharmacist.  I guess the once daily isn't prescribed yet, just the once monthly for post menopausal women with osteoporosis.  I will jump back in on Thursday or Friday and try and tough it out.  My onc has heard of what I am experiencing and is hopeful that my symptoms will lessen over time.  Either way she said I could miss up to 28 pills over the 3 year period.

Diane

LoriR

Hello to all

I stumbled upon your forum by accident and so glad I did.  I was asked too about participating in this study.  I wasn't going to because of the ONJ side effect but I am thinking it might be a good idea.  thougths

kt57

LoriR:  My dentist told me the risks are low.  I had a thorough cleaning and one small area on one tooth filled before I started.   and I am diligently brushing and flossing and rinsing to not develop any problems over the next three years.  Apparently a tooth infection can stir up problems - I've had one a couple years ago -- but he said that tooth looks great now.  

fortunate1

Blackjack- If you're still here. I have been given Reclast. It's not part of this study, but I came looking at this thread because I'm curious about all the bisphosphonates. Hoping of course for good bones and no bad SE's. I had my first infusion a year ago, the second will be sometime soon. No ill effects at all. The infusion itself is easy too. PM me if you want to know anything more.

LoriR

kt57 - thanks for your input - I think I will talk to the dentist and see what he thinks - I have thousands of dollars tied up in my teeth.  They look good but only because of the amount of money I have spent on them.  I don't come accorss nice teeth by nature so I a worried that issues might stir up ONJ which I DON'T need - of course I don't need BC reoccurance either.

Jaimieh

Bluedasher~ As always thank you for answering my questions ((bighugs)).  I have been taking my calcium after lunch so way after my clodronate so I will just keep on doing it.  Has anyone else on clodronate been stiffer than normal ??  I am 32 but feel like I am 92 when I get up from sitting. 

Hood1980

Jaimieh,  I was just wondering if you were on Tamoxifen.  My onc said that it was more likely the tamoxifen causing my joint pain (mainly in my hands) than the clodronate.  Aleve works well for me.

magentagirl

I have an interesting situation with the bisphosphinates. When I finished chem, my onc strongly suggested I be in the trial. So, I went to the dentist and needed a lot of expensive work including gum surgery. I Don't know if that would have kept me out of the trial, but I was nervous to take that on while undergoing all the mouth stuff. So I said no. Then I had my bone density scan and it came out to be just at the osteoporotic number. I was so happy! Because I could then get the Zometa and have insurance pay for it. So I have had my first infusion and just some aches and pain SE's. The funny thing about the scan was that the technician did it two ways. One way was to compare 4 vertabrae (which was how they usually do it there) and that one came up normal (ish). But she also did the numbers based on 3 vertabrae since that was how my previous test at Kaiser was done. And that one came out with the osteoporosis score (just barely). 

Ihavehope

I'm not on any trial but I take chlodronate and have for almost 9 months.  I have bone metastecis and my oncologist just prescribed my taking it orally indefinately.  I have no side effects from the chlodronate, but then, I also haven't seen a dentist so who knows what it is doing to my jawbone.

 I don't eat anything for two hours before and one hour after taking the pills, which I do twice a day.  Any form of calcium at the time of taking it will prevent absorption of the drug.  It is known to be hard on the liver.  The clodronate takes calcium out of the blood and puts it back in the bone and has a side benefit of discouraging cancer growth in the bone.  You can take calcium supplements or eat foods high in calcium, just not at the same time as taking the pills to allow for proper adsorption of the clodronate. 

 Good luck with your trial.

Jaimieh

Hood~ I'm not on Tamoxofin but I am on herceptin. 

didle20Diane

Taking another 3 day break from Ibandronate.  Now my neck is really stiff, not pain to speak of but hard to turn my head from side to side.  Just left Onc's office and they think it is the Ibandronate.  I wonder if it is the Tamox?

 ERRG.

bluedasher

Is anyone getting muscle cramps? I've been getting them occasionally, mainly waking up to a cramp in the muscle in the front of my ankle pulling my foot up. I can't remember if the first times happened during chemo before I've started the Clodronate. Except for during pregnancy, I haven't tended to have muscle cramps before. And this cramp is much tighter and harder to get to release than the cramps in the sole of my foot that I occasionally got during pregnancy.

Jaimieh

Bluedasher~ I am getting muscle cramps to the point where I feel like I have the flu.  Not fun at all but they are not sure whether it's the herceptin being dripped too fast or the clodronate .  My muscle's hurt down to my fingers and the legaments in my feet .

didle20Diane

I get the muscle cramps too and not like the ones I got during pregnancy as well.  The heat can do it to you especially if you sweat like I do.  I had a bad case the other night, felt awful, downed an entire bottle of gatorade and even googled to see if I could do anything other than walk it off or massage it which wasn't working......one suggestion was to pinch your upper lip with your thumb and forefinger.  The thought being it could be a trigger point to relax the muscle or it may just take your mind away from the pain of the cramp....I tried it and will use this trick again.  I hate these cramps and hate not knowing when they will pop up.

Good luck!