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My doctor has recommended I do a trial using gemzar/carboplatin/avastin. He sounds very optimistic about avastin. I won't know if I'm getting the Avastin or the placebo. I have to do a CT scan and blood work to make sure I qualify and need to have a portocath put in (I had IP and IV the first time). He's hoping to have everything approved and start chemo by next week.
Is anyone doing this trial or know anything about it?
Taxol Exercise MiraLax Cancer Avastin Prostate cancer Prevacid Flomax Kidney cancer Ovarian cancer Tramadol Oxycodone Pain Carboplatin Benadryl Lung cancer
Hi,
I'm responding as I was in a carbo/taxol/avastin trial for my front line therapy in 2006. I believe that it was successful for me. I think the most important factor you need to consider is the avastin side-effects and risks. They should be detailed on the consent form that you should have been given to take home and review. Go over them very carefully. If you are then still comfortable, then you can make your decision. If you are not in the avastin arm, you will still be getting the standard care.
Sending healing thoughts your way for whatever decision you make.
Sheara
Hi Acosta:
I'm in the same clinical trial -finished first cycle last week and starting 2nd next week. It's the Avastin/Carboplatin/gemzar....
Been able to continue working part-time and mostly continue my intense fitness program...
We're guessing I'm getting the Avastin; it's really messing with my stomach -I'm needing to take pepcid 2-3 times a day (never had to do this before and praying that it goes away after treatments are done)..
Also I have the tongue & mouth sores -began hurting to brush my teeth after first treatment (day 1 which is all 3 drugs) -they gave me some stuff to gargle with and that seems to be helping...
After day 1 I was a bit more fatigued and had no appetite for about 3 days -but it all subsided and my appetite returned and I felt great again. I did need to take some anti-nausea meds (zofran) those 3 days too...could be cause I overdid the exercise... hate to admit that... love being in a trial -they take really good care of you and you have your own nurse kind of at your disposal to answer any questions and respond quickly to side-affects -glad I'm doing it!
I also did the 6 rounds of IP/IV cisplatin/taxol -finished in Jun 06 -after that monster treatment -was very disappointed in the recurrence!!
Let me know when you get started on this trial -I may have other info for you by then...
God Bless!!
Susan (thebookie@cox.net)
Thanks so much for responding. I did get information on the side-effects and found more info online. I'm still thinking I'll do it because I'm hoping I get the Avastin and it'll help keep the cancer away. I, too, was very dissappointed that my recurrence occurred after 15 months. I know a lot of people have it recur much sooner but I was hoping to be one of the lucky ones who have years before a recurrence or don't have one at all!
Hi,
I am applying to the Carbo/Gemzar/Avastin study. I think I qualify and hope to start as soon as possible, as my symptoms are increasing daily. I had a 10 month remission after my front line treatment of optimal debulking followed by IP chemo. I'm surprised more women haven't commented, as they are doing this study all over the US. Avastin does seem to have some potential major side effects, but then, so does recurrent ovarian cancer!
Stacy
It looks like we may be starting around the same time. We'll need to compare symptoms! It's comforting to know that someone else is in exactly the same situation as you are - I know my family and friends try but there is just no way they can understand all the feelings and thoughts we go through.
JoAnne
I too am having a reoccurance after only 8 months. Very disappointed. Anyway I hope to start on the Avastin clinical trial Friday. I too am concerned about the side effects, but I do know that I'm going to be carefully monitered. Hoping for all of us a long remission and eventually a cure
I am in the same study. I think Susan posted some questions recently and I did respond.
I signed up for the study in April, 2008 when it was Phase II. I was told that it was pushed into Phase III, so that's a good sign.
I completed 10 cycles of carbo/gemzar and the 'study' drug which could or could not be avastin. During that time, I did have mouth sores. I also had sinus headaches, a constant sore throat and a runny nose. My gums and nose also bled a little. My nose bled because it was constantly running! I was given Zophran with my treatments and didn't have nausea. I wasn't really sick with this treatment, just a little tired. I do exercise a lot and kept doing so during the treatments and continue to do so.
Now I'm getting the 'study' drug once every 3 weeks. I still sometimes get a sinus headache a day or 2 after my treatment and continue with the sore throat and runny nose. My blood pressure has recently begun to inch up a little...I believe that's a sign of avastin. My primary care physician has suggested benadryl in the evening and that seems to keep my nose under control. I just started flomax to see if it helps my throat. I do think that I'm on avastin because of the remaining symptoms.
I no longer have mouth sores, so I think they were from the carbo and gemzar....maybe in combination with the avastin. When I first had chemo in 2004, I had carbo, taxol and gemzar and had no mouth sores.
I hope this helps. I think it's a good study because if you don't get avastin, you're getting the standard treatment for recurrence.
Hugs and good luck!
Sandy
Thanks for sharing your experience. I start tomorrow! I had my port put in on Monday and it's still a little sore and they're going to stick a needle in it? Ouch! I'll post any symptoms I notice.
JoAnne
Just got home for my 1st treatment. I noticed a couple of differences from my first experience. When I was getting Taxol/Carbo, they added Benadryl and something like Lorazapan to my pre-drugs. It made me feel calm and a bit sleepy which made it easy to take a nap during the long day or just not get so agitated by sitting for so long. I asked and they said this particular protocol doesn't include that and I guess they can't alter since it is a trial study. I was much more agitated and "antsy" without those premeds. I was cleaning out my purse, my bag, cleaning the area around my chair...I felt like asking them to give me some files to work on or something. I can't stand just sitting still. I get nauseated when I read or watch tv for too long, so I can't do that, either. But I shouldn't complain. It wasn't too bad. It's a different location than where I got chemo last time and I felt isolated. The people at the last place were friendlier and more approachable. Maybe it'll get better as I get to know them and they get to know me better.
I'm beind whiney...sorry!
JoAnne,
You totally get to whine. Sorry to hear about the benadryl, that was my favorite part of chemo! (That, and the warm blankets!) I will miss is it if I get in the study. I am still waiting to hear if I get in. Right now it is under review with my insurance. I had my port placed today so I'm feeling whiney, too. I'm getting more painful and bloated by the day. Good luck with the next few days.
Stacy
That port did get a bit sore, didn't it? It didn't hurt the first day. I came home and did laundry and went to work the next day but woke up with it very sore yesterday and it's still sore today. (Maybe from overuse?)
I want them to make it have that sound that those things on star trek make when you wave your hand over it - communicators??? I thought that would be cool!
Just checking to see how we're all doing in this clinical trial - finished cycle 2 last week and getting counts today. Ended up with only 1/2 dose of gemzar last week; white counts were too low -had 3 days of nuprigen shots & 1 procrit !
Lots of nausea and just plain yechy feeling; lots of stomach upsets -had to do a total bland diet and pepcid and stuff like that. Have had high-blood pressure & some mouth sores which seem to be better. But, today is much much better. Totally recovered and feel strong -so grateful today! especially grateful for my stomach to be cleared up Don't start cycle 3 till next week so have a week to feel good and catch up. My ca125 -taken before cycle 2 started, dropped from 401 (before 1st cycle) to 117 before 2nd cycle--!! At least I know it's working.
Looking forward to it all ending and being back in remission -praying this stuff works and it's a long remission for all of us -very long!!! Perhaps forever!
How are you all doing? Are you guys getting the same side-affects??
Luv Ya all
susan
It's been over 10 days since my first treatment, couldn't do the 1/2 Gemzar because of my blood count being low. I feel a lot better but still have a wierd stomach thing going...not really nausea but maybe queasy, acidy stomach...it just doesn't feel right. I feel better when I'm eating. Is that wierd?
JoAnne
I always felt better if I would munch on saltine crackers all day... even if I wasn't hungry I made myself eat something and not let my stomach every get empty. The doctors are thinking about starting me on Cytoxan/Avastin for 2 recurrance. Dreading it, but know it has to be done. I have said a prayer for you and will continue praying for all my sisters in this fight for our lives.
Thank you for your prayers. I will pray for you as well. Thank you for reminding me of the crackers. I did that the first time and it did help!
Good Luck!
JoAnne
Hi!
I chose not to do any trial treatments.
I was told I should respond well to the 8 rounds of Carbo./Taxotere treatments which would take about 5-6 months for the entire treatment. If I participated in the trial it would be another 15 months of treatments. What bothered me was not knowing if I had the medicine or placebo. I'm happy to say all is fine since my last treatment Dec.2008.
Best wishes to you. I hope all works out fine.
Hey to all of you on the trial:
I'm in the last week off between cycle 2 and 3; on Wed had to get the procrit and the neupregin again -counts really low. The neuprigen brings some weird pain for a few days - doc gave me Tramadol 50mg -I take a half which works - able to exercize -even cycling classes... without pain.
JoAnne -I also have the weird stomach thing going on -feels almost like an ulcer. Found that the crackers and plain baked potatoes (which is all I feel like after treatments anyway -zofran for neausea helps some but my appetite is bad for a few days - also my doc told me to take a Prevacid each morning and pepcid throughout the day as needed -this helps a lot..!! The Prevacid is over the counter -but he gave me samples. I also have to use Miralax -very constipated after both day 1 and day 8. These are wicked treatments but if these drugs help get us thru -then lets make it more comfortable!!
I also had the IP/IV -ca125 began rising at 24mos & started this trial at about 31months after the IP/IV...
You will stay in my prayers too !!! this is tough stuff but we can do it.... I hope and pray that we all get a long if not forever remission from this!!!! We deserve it!!!
Luv to all of you
Please let me know how you're doing and where you guys are in the process -I start cycle 3 on Wed (if counts are good enough)
susan
Hi to all!
I'm not quite in the same place as you, first off I'm a guy and don't have ovarian cancer, but do have lung cancer and am taking avastin, carboplatin, and gemzar. It's not a trial, it's my treatment. The side effects for me are a serious fatigue problem and really bad headaches -- almost all day every day, with extremely bad ones in the days following my chemo treatments. I get all 3 one week, then gemzar alone the next week, then a week off, then all 3 again. That's if, of course, my blood levels are high enough, which lately they haven't been sometimes. I've even had to have a blood transfusion and iron infusions. I'm probably old than most of you, I'm 66. Also had/have kidney cancer and prostate cancer. They tell me they can't cure me, just knock back the cancer -- but I'm beginning to wonder if it's worth it.
They give me oxycodone for the headaches, also for the pain I get because i've got a plurealx catheter in my chest to drain my lung -- that hurts a lot when we drain it every other day or so.
I guess the side effects would be a lot more bearable if I thought I might actually kill the cancer, and my last scan did show the tumours had shrunk, so my OC was impressed by that. I take a lot of alternative stuff too, especially a lot of medicinal mushroom extracts like reishi (ganoderma lucidium) that I make myself from mushrooms I find in the woods. In China and Japan it's almost mandatory for cancer patients.
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