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I'm interested in hearing from anyone who's being or has been treated with Avastin for recurrent ovarian cancer.
What sort of side effects have you experienced?
How long have you been on Avastin?
Is it effective?
How did you get your insurance to pay for it?
I'm starting Avastin treatment tomorrow and am hopeful but apprehensive.
Thanks in advance!
Cancer Taxol Tylenol Surgery Uterine cancer Avastin Ovarian cancer Anxiety Constipation Hernia Niacin Cytoxan Pain Weakness Carboplatin
I am also interested. I have done all the chemo there is 4 ovca and my Drs suggest a clinical trial with avastin since my insurance wont pay 4 the drug. I am apprehensive bout clinical trials. I was getting so weary doing the chemo non stop for 3 years. And to tell the truth was glad to have a break but know i have to do something soon. Any info would be appreciated.
Ladies,
I'm sure you're going to get multiple responses to your questions with respect to Avastin because this issue has been raised in the past. I am on Avastin now and I'm going to tell you of my experience, which is all I can do as I cannot speak for anyone else's experiences or opinions. I was diagnosed stage IIIB in January, 2006. I was on a clinical trial (I am a very big believer in clinical trials) which was taxol IV and carboplatin IP (the approved treatment is cisplatin IP). I opted for the clinical trial with carbo because it is less toxic. Unfortuntely, I relapsed within 7 months. At that point, I was pretty much told that I would never be in remission again and would probably have to be on treatment (there is a school of thought that considers ovarian cancer a chronic disease which requires continuous treatment) for the rest of my life and hope that we could just keep it from getting worse. We would use a drug (or combination of drugs) until I ceased to respond and then move on to something else. Being an optimist, I hoped that that would work until they found my "magic bullet". Next was a clinical trial for Evastaurin (a targeted drug as is Avastin). Again, I did not have a good response (a second small tumor appeared) but I've since spoken to the clinical trial nurse and they are having success with other women. That is why it is so important to find what is right for each person. We all respond differently and every drug has its side effects. At that point, I decided to forego clinical trials and went on oral etoposide. On that drug, I developed severe ascites and was hospitalized for several days. It was the sickest I had been since the diagnosis. My doctor (I'm at Fox Chase Cancer Center in Philadelphia) prescribed Avastin because she said it is particularly effective in those patients with ascites and a history of lack of response to other drugs. She is a young woman who really listens to each patient and investigates every avenue before recommending anything. I have it infused every other week and also take Cytoxin (an old treatment that is given in a low dose pill) once a day. That was in June of 2007. The ascites never returned and my two small tumors shrank by August. My CA-125 tests have been normal since September (although I have one coming up next Monday so I'm always scared as we all are) and in October my CT scan showed no evidence of the disease. I was declared in "clinical remission", words I thought I would never hear. As far as the insurance, my doctor has been able to convince the insurance company to pay for it but since it's considered going "off label" (FDA approved for other cancers but not yet ovarian), I need pre-approval for each treatment. My doctor is hopeful that it will soon receive approval for ovarian because there are clinical trials that are in phase 3. I recognize that there is no long term history for what happens to the body with prolonged use of Avastin and that a potential life-threatening side effect is a perforated bowel. However, ovarian cancer is pretty life-threatening so considering I'm living a normal life, working full time as the administrator of a law firm with 70 people and only have to take off every other Monday for chemo, I'm willing to take my chances. There are, obviously, other side effects, the most common being an increase in blood pressure and, yes, that happened to me but I'm now on medication and it's under control. I'm waiting on test results for my cholesterol. It isn't a side effect that was mentioned to me but someone on this website said it happened to her and my prior blood test showed it was high in spite of medication that I've been on for years so that will have to be addressed. When all is said and done everyone must look at their own situation, do your research and have open dialog with your doctor. Only then can you decide what's right for you. Good luck and God bless!
Hi,
I am in a clinical trial that is developing a vaccine to prevent recurrences so I have not had direct experience with Avastin, but I can tell you that both my oncologist and surgeon at Sloan Kettering have spoken very positively about the clinical trials that have been done with Avastin. You might want to check the MSK web site to see how much information they have regarding Avatin trials. Also another good source of information is the National Cancer Institute.
Good luck,
Katie
Hi Cancergirl,
Good luck on your trial of Avastin. From what I can find out the most common side effects are: headache, elevated blood pressure, mild nausea and constipation. There are also some possible more severe side effects but they do not happen very often. They can include some bleeding problems and possible perforations of the GI Tract. But they happen in less than 1 % of patients.
I'm sure that your doctor will carefully explain the possible side effects and he will monitor you closely for any problems.
I have a friend who has had Avastin therapy for OVCA and she is now in complete remission. So there is reason to be hopeful.
Also there is a next generation of drugs similiar to Avastin now in clinical trials. I have stage 4 recurrent uterine cancer and I just started a clinical trial of Aflibercept, which is one of these next generation drugs. I had my first infusion yesterday and so far the only side effect I have is a very mild headache.
As far as insurance coverage is concerned, if your insurance will not cover the cost of the drug. Contact the drug company as you may qualify for their patient assistance program. Your doctor should be able to help you with this.
Good luck and please keep us up to date on how you are doing. Sincerely, Eileen
Katie,
Good luck in the clinical trial for the vaccine. I was also in one for that which I didn't mention in my earlier response concerning Avastin. It was between the clinical trial for the IP carbo and the one for Evastaurin. My relapse was detected after receiving two doses. I'm really hopeful about new concepts like the vaccine. We have to keep our hopes up and help to raise awareness and funding so this horrible disease can be eradicated!
Linda
My wife is actually on a treatment based in DOXOL/AVASTIN .
From August 2004 , date the OVC Stage IIIC was debulked she had all the treatments: TAXOL/CARBOPLATIN (6) (from August to November 2004) , Doxol (6) (January to June 2005), remission till January 2006. New TAXOL/CARBOPLATIN/AVASTIN (6) ( January to June 2006) , remission till November 2006, new TOPOTECAN/GEMZAR/AVASTIN (8)(from November 2006 to May 2007) , New DOXOL/CARBOPLATIN ( 4)( from August to November 2007) changing at DOXOL/CISPLATIN (2) (November 2007 to February 2008) , now DOXOL/AVASTIN (2) going to 6 treatments.
Conclusion: at the first time the classic treatment based in Taxol and Platin was effective. The DOXOL alone was not effective. The Taxol/Carboplatin/Avastin was effective.
Avastin alone Not effective.
Definitely Topotecan/Gemzar/Avastin NOT effective.
DOXOL/Platin effective but unfortunately now she is Platin resistant.
Why DOXOL combined with AVASTIN . His Oncologist from NYU Cancer Institute NY said to us that the new research shows that AVASTIN could help in combination with other Onco Drugs. Definitely according to our experience the AVASTIN alone is really not effective.
After the second treatment (every 21 days) of DOXOL /AVASTIN the CA 125 is stable (not low it is still 150) but not raising.
Which is the new theory ( and Trials) with the AVASTIN combined with DOXOL (or another onco drug) explained by our Dr. AVASTIN is a drug that "cut" the blood vessels which feed the cancer (called Angiogenesis). The blood vessels are responsible to create a High Blood pressure inside the tumor. This excessive blood pressure do not allow the drug (as Doxol) to enter into the tumor. The AVASTIN, by "cutting" the blood lines decrease this "intratumoral blood pressure”, which allow the Doxol to penetrate into the tumor. According to our Doctor, some investigation are trying even to measure precisely this intratumoral blood pressure.
We have to wait at least 2 or 3 more treatments to see the efficiency of it.
In my opinion if you are just with AVASTIN, ask to your Dr. if it is not more sure to combine with an Onco Drug.
Side effect of AVASTIN. Really not to much just the High Blood pressure that you can control with a pill ( Hyzzard for example).
Hope this experience could help you in the treatment.
Yuso
Thanks so much for your response! It was pretty much what I was hoping to hear.
I had IP Carbo with Taxol also when I was first diagnosed, followed by a year of "consolidation therapy" (12 rounds of Taxol). My cancer was back in about 5 minutes, plus I now have excessive internal scar tissue and adhesions caused by the IP.
On a more positive note, my doctor says that there is a new class of drugs, called PARP inhibitors, that are currently being tested in Europe. She says that this class of drug is expected to be important for carriers of BRCA mutations. I haven't had time to do any research on PARP inhibitors yet, but when I do I'll post to the group. It sounds pretty hopeful, as does the trials of vaccines and new antibodies that are going on now.
Thanks again to everyone who replied, and best to all of you!
Cancergrrl
I was on avastin and cytox fr9m January 15th through early March. My ascites almost cimpletely disappeared. It seemed miraculous. I had no adverse side effects. Unfortunately it only worked until March. I'm now Irinotocan a synthetic form of topotecan, but slightly different at the molecular level.
I'm currently enrolled in a phase 2 trial using Topotecan and Avastin. I just finished my first 3 month cycle and my CT showed my 5cm cyctic mass on top of my liver is totally gone (awesome) and the other solid but small mass also on my liver is half its size from 3 months ago.
My CA 125 is 17. I'm reminded that Avastin can make that diagnostic spike over normal. I think it's being studied and if not it should be. CA125 anxiety is annoying and a waste of life. Perhaps we shouldn't bother with that marker when on Avastin??
My wish is the longest remissions possible for all OVCA warriors and there loved ones, like forever
I was in a Phase II clinical trail for Avastin with Carbo and Taxol. This clinical trial was for first line treatment for my stage IV diagnosis. I had chemo for 7 three week cycles, with Avastin added in cycles 2 -7. Then Avastin alone every 3 weeks for another full year. All were given IV. My last infusion was this past September. My oncologist has considered me in remission for over a year. She has told me that the initial statistics are looking promising as far as longer times to progression. In that respect, the fewer data points she has in the near-term mean longer remissions.
I began less than 2 weeks after my debulking surgery. The surgery was not optimal, i.e. I had residual disease. During the treatment my CA-125 dropped from over 5300 post-op to 6. For the year of Avastin alone, it cycled up and down between 6 and 12. It is now 8. My residual tumors and enlarged nodes are gone/normal in size.
Side effects (that I can remember) were bloody noses, increased BP (controlled with meds), headaches, very easy bruising...and long healing...and enhanced impact on decreased red cells, white cells, and platelets. After the chemo portion ended, the bloody noses decreased, and the blood counts returned to normal.
In this clinical trial the manufacturer provided the Avastin. My insurance covered everything else. I discovered that I am lucky to live in a state that requires all health insurers to cover costs for cancer clinical trial medications and related procedures (labs, scans, office visits).
I know that I am a lucky one. I have met several women who could not tolerate Avastin, and had to leave their trials for various reasons. I would do a clinical trial again, in a heartbeat, as long as it contained an adjunct to currently approved protocols, which I believe is the case in most of these efforts.
As Yuso mentioned, some of the more recent analysis is showing that Avastin and anti-angiogenesis drugs have a synergy with chemo to improve the uptake into tumor cells, and produce quicker cell death. I hope that we are getting closer to a big hammer to hit that cancer nail!
Sheara W
Thank you all 4 the information. Very helpful and makes me feel more at ease bout the clinical trials.
Hi Cancergirl,
I am presently in a study for Avastin. I do no know if I am getting the drug or the placebo. I was told that Avastin in not approved for OC and the study will hopefully help approval status. I understand that it is approved for colon, lung and other cancers. I hope I am getting the drug.
If your doctor and your insurance pay for Avastin, go for it. I am on Carbo/Gemzar at the present time during the study. Side effects are minimal.
Good Luck, Elaine
My Dr told me that they would fight to get me covered for avastin if i need it. I am currently on naboline, which is dropping my ca125 and making my nodularity flatten again. i have had ascites, and have been drained 2 times, and am going to be drained again friday, but the first 2 times it was only 3 weeks apart, this one is going to be 4 weeks, and i actually have only gained 3 pounds of fluid, they took of almost 11 pounds of fluid the other 2 times, 4.6 and 4.5 liters repectively. This ascites is the worst part of what i have experienced during my entire treatment and battle with ovarian cancer, since july of 2006. I am hopeful for a remission, as my ca125 has dropped from 780 to 318, just after the second cycle, it dropped 100 after the first cycle, and i just completed the third cycle, so i am praying for consistent results. I feel great, and i am seeig a homepath for system support and immune support. I have only been seeing him for a month, but i have noticed a tremendous improvement in my internal feeling of well being since i have been on the whole food supplement fir renal support. He just put me on a b6 niacin supplement, that i requested, becasue i was taking a b50, and he told me after testing it, that it wasn't doing anything for my body. This guy is spot on. Anyway, it is good to know that avastin is out there if you need it. I hope that i don't, but it is good to hear all the positive results. I do have a friend with ov, who took a clinical trial with avastin, and it didn't work for her, but i bet she didn't get the real drug. God bless. sherry
Thanks to all who have posted about Avastin. I, too, am considering this drug. I was diagnosed Stage IIB in February 07. Went through debulking and standard 6 rounds of carbo/Taxol. CA-125 went down to 9 and remained 9 three months later when I had a re-check and hernia repair surgery. Gyn. Onc. did surgery and detected no cancer, yet 3 months later I was experiencing pain and discovered rising CA-125 and indicative PET scan (only 7 months after last chemo treatment). I'm going down to Mayo on Tuesday for second opinion on treatment options but hope I'm a good candidate for the Phase II trial of Gemzar, platin, and Avastin. Even though this is the first recurrence, I feel my cancer is aggressive enough to warrant a clinical trial and Avastin seems to be the best option. I'd be happy to hear any advice or comments.
Hi Shredder73,
I'm not a doctor (just an interested party), but I'm surprised your dr. would recommend a regime that includes platin when your cancer returned 6 months after you stopped treatment.
There's a trial going on right now with Topotecan and Avastin that's specifically for women who are considered platinum resistant. I believe that the clinical definition of platinum resistance is if the cancer returns <= 6 months after treatment with a platinum drug. It might be something to check out.
Good luck!
Cancergrrl
PS I had my first Avastin treatment last week. The nurses in the treatment center say they've been having really good results with it and they use it a lot.
I am so encouraged by all your positive feedbacks. I will start on avastin, and 8 days later, gemzar. I am platimum sensitive and nothing else has worked. If you all have any hints on dealing with this regimen, please post. I was diagnosed 3b, 3 years ago and recurred 6 mons. after my first round of cisplatin and toxotere. Until the last few months the only thing that has made me ill were the chemicals, but he cancer has progressed enough to be very painful, so I hope that this regimen will work.
I am answering for my sister-in-law. She is on Avastin now as a last resort. She will do 2 more treatments and if nothing happens, doctor will transfer to hospice. We hope and pray that Avastin is the one. She has only been on first treatment for about 1 week and nothing has changed. Her side effect has been extreme fatigue. Our concern also is she has pain in her side. Hopefully, not more cancer just a side effect. She has a stoma, but that is not where the pain is located. We are expecting the worst, but hoping for the best. Avastin seems to be a miracle drug for many on this website.
I had a tumor in my pelvis the size of a plum 2 months ago, and multiple nodules in my lungs; my doctor put me on avastin every 2 weeks; the tumor shrunk, and the tumors in my lungs disappeared. Now I am going to have surgery to remove the rest of the tumor in my pelvis. There were hardly any side effects to Avastin...just tired for a couple of days afterwards.
I might be the oddball here. I am having some serious negative reaction to Avastin. And I've only had 1 round! Although it could be the Carbo or Gemzar too, I guess. But, the Onc has NO idea what is going on. He can't even say for sure it is the Avastin, but doesn't think it is either of the other 2 drugs.
I have had elevated liver function (liver inflamation), and SEVERE pain in my lower back/flank (kidney area) and liver area up under my ribs. Those are the side effects that are baffling the doc, and that he can only attribute to Avastin, but has never had anyone have these side effects from Avastin before.
My blood counts went into the toilet immediately, but that is from the Gemzar. I got sick, but that is due to the Carbo.
I never felt like this with Carbo/Taxol in 2008. I hope I am the oddball, and that most women breeze through Avastin, like it sounds like most do! Except for me!
Jeanie
What insurance company are you referring to?
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