Avastin, anyone? Did it work for you?

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 said:

Thanks for the tip!

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!

 

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

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 said:

Great to hear your comments.

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

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.