Roll Call: Anyone in the Phase III Trial of Bisphosphonates

sarahsewer

Hello Ladies,

I'll add my two cents if I may. I agree with the other coffee drinkers that the 30 minute wait is a downer, but when I am desperate for caffeine I'll pour half a cup and sip it slowly. Since I usually add milk it is not as tasty as I'd like and I drink it more slowly. After the 30 minutes I drink it the regular way.

I bought a bed rest pillow (one of things with arms) and a few times took the pill and sat up to sleep.

Another helpful thing for me is having the pills and a glass of water on my nightstand. If I take the pill the moment I wake up I can tick off minutes with normal morning things like a bathroom visit, grinding beans, letting the water run and doing the morning crossword on the computer.

I am a genuine coffee addict so I know your pain.

Sarah

Morgan513

Sarah,

I also keep my pill and water on my nightstand.  It makes it easy to just take it and then waste time doing "stuff".  I won't go downstairs because then I'll want my coffee and it makes me really aggravated having to wait.

Lorrie 

Wink

Stephanie - do you think that the ibandronate could be causing your hives?  I realize that you have been taking it for 1.5 years, but you can develop an allergy at any time.  I think that the study has an amount of time that you can stop taking the bisphos. without withdrawing from the trail completely; check with your coordinator and see what she/he says. 

DATO

To kt57,  Sorry it's taken me so long to reply.  I don't come to this site everyday like I used to.  In answer to your question, no I'm finished with the Zometa infusions.  I don't see my oncologist again for 6 months now.

Darlene

sunandsandgirl

I have been on the Clodronate band of this study since February.  I break out into hives 5 out of seven days about two hours after I have taken the medicine.  My onc does not seemed worried.

I have switched from taking Clodronate in the morning before coffee to two hours after lunch.  My upright time is spent in the car picking up my children and driving them to afterschool activites. It makes for a much shorter hour.  This seems so much less life altering as coffee on the porch before the day begins is one of my favorite things to do with my husband. 

I am having trouble deciding what is depleting my energy the tamoifen or the clodronate.  My sodium levels keep dropping which causes my blood pressure to drop. I saw my Onc last week and now I am drinking pedialyte everyday. I do seem to feel a little better.  Has anyone experienced this?   

Panchoandlefty

Wink-

I get the hives before I take the Ibandronate, so I don't think there is a connection. A few pop up just before bed, they spread through the night, then explode when I get out of bed. Totally weird. I have never been allergic to anything before. I'm seeing an allergist. We're all stumped.

I should check with the coordinator to see how long I have to keep going for my data to count. That would be good.

Stephanie

kt57

DATO:   Thanks. I'm new to ibandronate -- was wondering if after the 3 year trial, I will take something else, or convert to the Sally Field - once a month plan.  I was osteopenic on my pre-trial dexa scan...by now I hope my bones are tough as nails! 

didle20Diane

Pan, you can miss up to 28 pills over the 3 year trial......
You can get approved for zometa if you have a dexascan and it shows abnormal bone density.  I know  a few post menopausal women who get zometa every 6 months....not for the trial either.

So sorry to all the coffee drinkers.....I take my pill when I get up and sometimes I even lie back down for a bit since I don't have any reflux issues with the pill.

My oncs say that if you can't wait to eat/drink it probably won't hurt if you do once in a while.  The key is the 3 years....the effects will last us long after we stop taking the meds.

Good luck!

Diane

Panchoandlefty

Unfortunately, I am premenopausal and have great bones. Bummer being so healthy and all. lol.

Wouldn't be an issue if I was older... I know my onc routinely puts his patients on bisphosphonates as a precaution. I was just too young to qualify so the study seemed a good route.

I had a iffy bone scan last spring (possible mets in lumbar spine) but it turned out to be early arthritis... not sure if there is a way to make a case on that. I have no idea how much Zometa costs out of pocket. I know my onc would write a script.

I wouldn't get off the Ibandronate unless I could get on something else. I think the benefit is huge.

 Stephanie 

bluedasher

Pan, when I left the study (after about 3 months on it) due to a kidney issue, the coordinator asked if I was willing to stay on for follow up so apparently they will follow your data regardless of how long you stayed on.

rockbranchdeb

I recently discovered this thread, and since I am nearing the end of chemo & considering this trial, I wondered if someone could answer a few questions:

1) Has anyone done this trial while also doing radiation?

2) Are there other drugs infused before the Zometa (if you are on that arm)?

3) If you are on the Zometa arm, do you receive the infusion via port--in other words, do you have to endure having that darn port for 3 more years???

4) Is weight gain a possible side-effect of any of these bisphosphonates? (I'm weary of the steroids!)

5) For fellow TNBC ladies: Have you looked into the vaccine being investigated by Dr. Joseph Baar in Cleveland? If/when that becomes a Phase III trial, could that be undertaken while on the Bisphosphonate trial, or would we not even be considered for it?

   Thanks in advance for all your help!

Morgan513

I am on the Ibandronate arm and started while doing radiation.  No impact at all.  I have had no weight gain from the bisphosonates either.  

I will have to look at the other trial by Dr. Baar, never heard of this.  

Lorrie 

Helen-Jackie

hello

i live in canada and its available privately now. so if u want it without being in a trial and getting randomized then u can get it here. They come to your house apparently and it costs the same.. So since my onco score was 16 there was no chemo recommended but since i have lvi we wanted to shut down my ovaries and then do zometa.. hopefully in the winter it becomes part of standard medicine.

bluedasher

Whether you keep your port would be between you and your oncologist. I was randomized to the Clodronate arm, but I was thinking that if I had been randomized to Zometa I would keep my port for the first 6 months because the infusions are monthly then.

Weight gain isn't on the side effects list for any of the drugs in the study.

I don't think any of us can predict what the entry conditions might be for a phase III trial that hasn't started yet.

Helen-Jackie

never heard of joseph barr either.. tell me more.. i learn alot here.

u can definately do radiation with zemta and tamox.. they just like to keep the side effects down so they many suggest to do it separtely

Helen-Jackie

never heard of joseph barr either.. tell me more.. i learn alot here.

u can definately do radiation with zemta and tamox.. they just like to keep the side effects down so they many suggest to do it separtely

TexasRose

I have the paperwork in front of me to join this trial. I've been doing a little reading and can't see any reason not to participate.

Rockbranchdeb- I asked about the port because I hate mine so badly and I cannot wait to get it out. It's in a bad place and it still pinches and hurts sometimes, even after having it since April. I have two more weekly Taxol and will have the last one on 10/06. My port is scheduled to come out on 10/26. They asked me to leave it in for two weeks following the last chemo and that is the first available appt my BS could take it out. My clinical trial nurse (who I have been with since May when I started chemo because I also did the Avastin trial) said there is no reason I cannot get Zometa in my vein if that is the arm I get. There is no way in hell that I would keep this port for three more years. I can't help you with your other questions. I won't be doing radiation.  

samiam40

I was randomized into the Zometa arm of the study, and just completed my 6th monthly infusion, so I am now onto the every 3 month-infusions.  I never had a port, so I always got the infusion in a vein.  I started the Zometa while I was still doing chemo, and would get the infusions together.  But since I completed chemo, the only other "drug" I have infused is saline.  Weight gain is not a known side effect of the bisphosphenates.  Hope that helps! 

rockbranchdeb

Thanks, everyone for all of your information/advice regarding this trial. Are there any preliminary results for it yet?

Those who wanted more information about the triple negative vaccine: I found the link in the "positive about triple negative" thread. It is: http://www.sciencedaily.com/releases/2008/12/081212141847.htm

Anonymous

Hi Ladies,

I'm new to your thread, I finished chemo mid July and started Clodronate (did I spell that right?) about 2 weeks ago.  I haven't really had much in the way of se yet, just a little stiff sometimes when I get up from sitting for a while.  Question for you all:  About 4 days after I began the drug, I started with an incredible thirst, I asked the trial nurse and she said it wasn't a known se.  My oncologist wants me to check with my primary to be tested for diabetes as thirst is a symptom for that, just wondered if any of you had this happen?  Thanks.  HUGS, Dawn

Wink

I don't know if this was just rumor, but I heard that you could not get the Zometa through your port.  If anyone has firsthand knowledge of this, please respond.

Dawn, I'm on ibandronate and have not experienced an increase in thirst; I have experienced some stiffness - especially the soles of my feet?

samiam40

Dawn--I would get it checked out as your oncologist advises.  It is probably nothing to worry about, but one of the things they check for when they do your labs on this study is creatine levels to make sure the bisphosphenates are not adversely affecting your kidneys, and one sign of kidney problems is excessive thirst.  Again, it's probably nothing but best to be safe & get it checked out.

Donna--I can't address the port issue as I didn't have one and get Zometa in a vein.

Anonymous

WINK & SAMIAM, Thanks, I'm going to try to see my primary next week.

Hope you're doing good SAMIAM;o)!!!

 HUGS, Dawn

rockbranchdeb

I had my last chemo today (I'm on the E5103 trial, (Arm , so it was the last of the taxols.)

I found out that the Ibandronate arm of the bisphosphonate study is now closed (that one took fewer people than the other 2 arms), so there is now a 50/50 chance for the other two. My oncologist said that these bisphosphonates have shown great promise in blocking mets everywhere--not just bones. Has anyone else heard this?

Another side note--if anyone here is also on the E5103 (and maybe you know this already), it has been halted. That is, there will be no new participants because 6 out of the first 200 have developed congestive heart failure. But I'm still glad that I got Avastin; one more piece of armor!

Morgan513

Rockbranch--I've also heard that bisphosphonates show great promise in blocking all mets.  It's very exciting!

Lorrie 

Morgan513

Now I'm confused.  If you remember, I posted earlier that I was told to wait an hour after taking my ibandronate in the morning.  Well...I got a letter in the mail today from the clinical trial nurse telling me that the protocol has changed and now I have to wait 60 minutes after taking the ibandronate to eat or drink.  Helllloooo????  That's what they told me to do from the beginning???

Has anyone else received a letter like this?

 Lorrie 

sarahsewer

If I have to wait an hour instead of 30 minutes I will be very bummed.

Hood1980

I'm in the clodronate arm and I have not received a letter saying to wait 60 mins, but I usually do most days anyway.  I have a lot of stiffness, especially my hands & feet but my onc said it is more than likely caused by the tamoxifen vs the clodronate.  Great...5 years instead of 3!!  LOL!

mmm5

Hi all

Am in Clod arm and have been for a year. Does anyone have weird bone aches in their feet and hands like throbbing bone aches that come quick then leave and move around?

I have been off AI for 2 months so I am not sure it was that.

sunandsandgirl

mmm5

I have hand and bone pain, but I was assuming it was from the Tamoxifen.  My fourth fingers on both hands really bother me.  I have been on the Clodronate arm now for 8 months.

sunandsandgirl