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Avastin, anyone? Did it work for you?

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

Hello, everyone--

I had surgery last week--what I guess you could call a combo laparoscopy/laparotomy. This was after the end in Dec. 2012 of my chemo on carboplatin/Taxol, a PET scan that potentially showed only scar tissue remaining, and a decline of my CA 125 number to 23 as of Feb. 11.  

On completion of the surgery, the surgeon said he could see no more cancer but would reserve final judgment until the pathology report came in. The path report is now in, and the surgeon was wrong. Three of the six sites biopsied came back cancerous.

So after being elated at the end of chemo and at the apparent return of some hair on my head, and after looking forward to N.E.D. status, I'm apparently headed back for more chemo. The surgeon has suggested another 3-4 months on Taxol/carboplatin, toward the end of which they'd add Avastin to the mix. Then I'd continue for perhaps another 6 months on Avastin.

I'm wondering what other PPC patients have experienced on Avastin.  I've seen the dire warnings on the mfr's site, and also the encouraging news there have been some positive recent results with Avastin for ovarian cancer.  I've also read the newspaper reports about the withdrawal of FDA approval for Avastin for other cancers.

So I'm wondering how others with PPC have done on Avastin. I've started to search this forum for Avastin references but haven't found much detail yet. Would appreciate hearing about your Avastin experience. THANKS!

For more on my surgery, you can check out www.CaringBridge.org/visit/CaroleSeaton if you want.

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

Hi Carole, So sorry to hear the pathology news following your surgery but positive that your CA125 still low.   I have no experience of Avastin with PPC but wanted to send love and strength to you in this next part of your cancer journey.   There seems to be so little known about PPC - so few of us, even with a site like this that brings in people from all around the world!   We are a rare breed!   Good luck in your quest for information.  It might pay to post this on the Ovarian site too as I have noticed that some with PPC post there rather than here.  Stay strong girl!

Julie x    

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

Thanks for your reply, Julie, and your kind encouraging words. It was a shock to hear about the remaining cancer after all the docs seemed quite sure it was gone. I'm adjusting to the idea of going back on chemo, but I'm concerned because Avastin seems to have so many bad side effects in newspaper reports. Also, it's sometimes reported as not effective for lengthening lifespan. On the other hand, my surgeon must be recommending it for a reason, so that's the conversation I intend to have with my oncologist when I see him in about 10 days.

Thanks for the suggestion of posting inquiries on the ovarian cancer site too. I have been searching on both the PPC and ovarian sites for Avastin references, but the search function here is not great--it returns a positive hit if the word is only mentioned and gives no clue what else may be in the results.

 Don't think I've seen anyone mention the excellent reference on the Natl Compehensive Cancer Network site.  This site represents the (22?) major US cancer research hosoptials.  Their patient guidelines on ovarian cancer (link below) are the best info I've found. They explain over and over again how the guidelines apply to PPC as well.  In their discussion of drugs, they give all the names the drugs are known by.  In fact I've printed out the guidelines so I can keep them at my side for quick reference.  You can bet I've been studying it closely in the last few days! 

http://www.nccn.org/patients/patient_guidelines/ovarian/index.html

Thanks again for your message and your encouragement!

 

PatsieD
Posts: 100
Joined: Jun 2012

Hi there...

I was really sorry to hear your news ... and delivered to you just when you were having a lot of good news too. If you key in the words

 

ovacome healthunlocked

 

into Google... the ovacome message board site comes up. On the top right hand side, you'll see a search facility. I've typed it in for you and found recent references to Avastin.

Hope this helps. Love and all the very best to you. x

Nflinchum
Posts: 73
Joined: Jun 2012

I was wondering how you were doing. So sorry to hear about this Carole. I had six treatments of avastin. I have never had blood pressure problems and this drug causes hypertension, constipation, and dried my nose out terribly. I had all of these symptoms. I had to start taking blood pressure med and go to the ear, nose, throat dr for my dryness. Other than that no problems. I only got to take treatments for I was in a clinical trial and I could only receive 6 treatments in the trial.  I still had cancer so I had to have 3 more chemo treatments. They wanted me use it as maintenance drug but it is so expensive my ins. Wouldn't cover it andI couldn't pay out of pocket. Keep me posted and I will keep you in my thoughts and prayers.

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

Thank you, ladies, for your thoughts. Patsie, I checked that link and am finding some good info. Nadine, thanks for the benefit of your experience. All the side effects you had  are issues for me--I hope the side effects can be contained. I am so lucky that my insurance covers my treatment, at least so far. I was stunned to see the cost of Avastin.  Before my cancer diagnosis, I had been on biologics for the last decade at a cost of $100,000/year for treatment of my lifelong case of rheumatoid arthritis. Medical care just costs too much! [Sorry to get on my soapbox.] But at least somebody is saving some money somewhere, because the biologics for RA are incompatible with cancer chemotherapy.

Anyway--I'm hoping the Avastin will work well for me, and I hope we ALL find a way to good health. Thank you again.

PatsieD
Posts: 100
Joined: Jun 2012

Glad we're here for each other. x x

dorothymarion's picture
dorothymarion
Posts: 28
Joined: Apr 2012

I had four treatments of Avastin last year, but did experience some side effects that included very low blood counts which, despite receiving Procrit shots, eventually led to my oncologist taking me off that particular chemo.  Unfortunately, it also did not bring my CA125 levels down.   However, since chemotherapy works in different ways for different patients, I'm keeping my fingers crossed that this treatment will work for you.  Sending lost of warm wishes  your way.

Dorothy

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

Thanks, Dorothy and everyone, for your input on Avastin. Had my first infusion almost 3 weeks ago, with no discernible bad Avastin side effects. Same old nasties from Taxol/Carboplatin--some neuropathy in my feet; hair will be gone soon. Next infusion of Avastin plus Taxol/Carbo is Tues., but after 3 more doses of Taxol/Carbo/Avastin each 3 weeks, it'll be Avastin only until the end of the year--at least that's the plan at this point. Wouldn't you know it--I get to go BALD to a big family wedding and a big class reunion, both in June.

At the time of my Feb. surgery, my CA 125 number was 23.  The surgeon warned it could rise after surgery just as a function of recovery from the surgical assault, but it remained at 23 a month after surgery.  So I'm grateful for that.  I'll be curious to see what the number is on Tues.

Had a very bad time over Easter weekend with eye symptoms. First thing I thought of was whether Avastin was causing them. But my oncologist said no, "They shoot Avastin into people's eyeballs for macular degeneration, so I don't think that's the problem." Turned out I had iritis, with potential serious cornea damage and even blindness, but it was only peripherally related to PPC. When I was diagnosed last July, I had to stop the biologic Remicade for my rheumatoid arthritis because it does not mix with cancer drugs.  But chemo is supposed to suppress RA symptoms, which for me it mostly had. It turns out that people with autoimmune diseases including RA are at special risk for iritis, which I had never learned in my 40+ years of treatment for RA by at least half a dozen rheumatologists. So--just in case you know anyone with both an autoimmune disease and cancer--tell them to watch out for iritis!

Thanks again for all your comments! I'll continue to blog about my progress at CaringBridge.org/visit/CaroleSeaton

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Carole I'm glad you did ok with the avastin. I'm sorry you will go bald again. At least your CA's are low. I went and had mine done last week and they are up to 338. I have to go Monday for a CT scan and to dr on wed. So most likely they will start me back on chemo. My hair is about 3 1/2  Inches long so I will probably be there right along with you. You take care and hang in there. You are in my thoughts and prayers. I will check out your caringbridge site.

ace3434
Posts: 2
Joined: Apr 2013

Hi I just lost my wife to PPC this past November.  Her CA-125 dropped dramatically over the Summer of 2012.  She was above 12,000 when she was diagonised.  They had her on Taxol for a few months.  When her numbers rapidly dropped they took her off the Taxol and would monitor her for the next few months.  It did not last long massive amounts of tummors developed in her liver and she died a few weeks latter.  When the tumors came back they tried carboplatin, but that just messed up her liver more and she started bleeding internaly.  Are you on a combo of Taxol/carboplatin where you would do one 1 cycle and the other in the other cycle.  I was hearing so many positives durring the summer and others who survived this for longer than seven months, hopefully you can give me some insight on it.

Thank you

 

Adam

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

Adam, I am so sorry to hear of the loss of your wife. How devastating for you, and how disappointing for the rest of us to hear. You have my sympathies.

Sounds as if your wife and I may have been diagnosed at about the same time. I was on the Taxol/Carboplatin regime approx. July-Dec. 2012. Sometimes it was Taxol only, sometimes both. I'm sure you know the drill.

After Dec. it was recommended I undergo surgery, then resume chemo of Taxol/Carbo/Avastin, so that's what I'm doing now. All is going well so far. Looking forward to the end of Taxol/Carbo after 2 more times, then Avastin only until the end of this year.

Should you be interested, you can read about details of my treatment at

Www.CaringBridge.org/visit/CaroleSeaton

Again, my sincerest sympathies.

 

 

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