Update--Not Looking Good

[Jan214]

I went for my onc appt last Tues and it was not good news. Back in Oct I had a CT scan and it showed there were 13 tumors in my liver and a few in the pelvic area. I was kind of shocked because up until that point (2 yrs) there had been no evidence of disease since my original surgery,  just a rise in my CA 125.   I have been on chemo constantly since I was dx in Sept 2006.  My CA would get down to 8.5 or 22, but it always popped back up again.  I had hoped to just go on like that with microscopic cells, but it didn't work out that way. He put me on a Doxil/Carbo cocktail which works well for some, but not for me.  I had another CT at the end of January and the chemo did not work at all. None of them are gone, none of them have shrunk, and on top of that there are a few more in my liver and in my pelvic area.

My onc put in a request with Aetna, my insurance company, to try and get approval for Avastin. I heard that Gemzar and Avastin were put on the list of acceptable ovarian cancer drugs with Medicaid and I think the insurance companies generally follow what Medicaid does, don't they?

I know some of you have been on it, but I don't remember what all you had to say about it so I would appreciate hearing your experiences with Avastin again.

I don't know if there is any plan past the Avastin. He says we are looking at a month to month situation here. I am really weak, sick and tired all of the time.  My liver started hurting a couple of days ago. I have been running a fever & we don't know what from, but he called in an antibiotic just in case.

I am going to have my records looked at by MD Anderson and I think John's Hopkins too. I have family up there so that would be convenient.

I hope this is making sense. I have been putting off writing this, because my brain just isn't working well these days and I just keep erasing everything I write.  

Well, I don't know what else to say. I hope the ins co approves the Avastin. I really hope it is my miracle drug because it has come to that. I really need a miracle.

I will let you know what happens. Thank you all for you support. It really has kept me going this last couple of years.

Jan

[Randy411]

I'm currently on Cytoxan and Avastin.   My dr's told me that the mechanism and effect of Avastin (a biologic that prevents new blood vessel growth) is enhanced when given with a "traditional" chemotherapeutic agent.  Thus, the cytoxan.  I'm due for #3 this Friday.   So far it's not been bad at all.   Here's my history: diagnosed in Oct of 2006 (stage IV), extensive surgery followed by carbo/taxol.  In remission from March 07 to Nov 07.  Then recurrence but not anywhere outside of its original location of pelvis/abdomen.  Please be aware that the second-line treatments are considered "late responders" and you need to wait for 3 or 4 cycles to see whether your CA 125 is trending upwards or downwards.  I first went on Doxil for 3-4 cycles; didn't work.   Then went on Gemzar for 3-4 cycles; didn't work.  Then went on Etoposide for a few months; that didn't work.  Then was on Arimidex for 2 months; that did not work.  These all had different side effects but I've been able to work most of the time with occasional days off after chemo or if my red count is really low and I'm just too tired to manage.   I think all of these chemo regimens probably worked "a little" and kept the cancer from spreading outside of its general location.  However, the number of small masses has increased.   They all effect your bone marrow - you surely already know this - and so treatments need to be delayed when your counts are low.   I've been told by my dr that remission is no longer an option for me so our goal now is "stabilization."   That would be fine with me as long as they find a drug that'll keep those darn cells just where they are and with very little activity.   I don't care if I'm on chemo for the rest of my life.   I'm so sorry you're going through this but I hope that the Avastin will help you and that you do not have much trouble with it.  
Randy

[PinkTissue]

I saw your post when I was sneaking to surf the internet at the office. I am so sorry to hear that the CT scan result is what you and your family is looking for.

Like all others who have posted here, I hope that your insurance company would approve the usage of Avastin.

Take care. I would be praying for you.

Pink

[nyc lady]

Like the others, I do not know what to say.  

As for the avastin approval....if they don't approve, contact the drug company...and there are also organizations that will help pay medical fees etc, the American Cancer Society...the Chronic Disease Fund.  

Have you done the femara route???  Is it worth a try?  Armidex, any of them...sometimes they keep things stable and that can be okay for a while...they are also easier on the body and might give you the rest you need to keep fighting.

Wish there was more I could say or do.....I hate this disease...and I try everyday to educate people and promote awareness, it just doesn't seem like enough.

Love,
Pam

[bohan54]

Just wanting to add my name and support to this list.  I am at a loss for words though, trying to type through tears.  
Sharon

[yrrek]

I too am so disgusted with insurance company's and the games they play.  I am sorry that you have had to deal with that.  I am hoping that your meds will be approved very soon and I am praying for you and your loved ones and the Dr.'s and nurses who will help you, that it will be a miracle and you will be feeling better soon.  I don't think you rambled or sounded confused.  I think you sounded like a sister talking to her sisters:)
Kerry

[westajul]

Hi,
I am sorry to hear about your ct scan. I am on avastin along with other drugs. My ovca had mets to the liver ...I only had 2 small tumors. Avastin has worked great for me. I have had 10 chemo treatments. I have had very little side effects ( except being tired) from my drugs. I didn't get headaches, high blood pressure or any other side effects.  I do need to mention that because my ovca is acting more like colon cancer my chemo combination is usually used for colon cancer patients. My doctor at MD Anderson is who put me on this chemo program and my local oncologist has followed the program. I loved MD Anderson.  I REALLY hope your Insurance company agrees to pay for Avastin. I have federal blue cross/blue shield and they agreed to pay for mine.  If insurance companies would realize Avastin is cheaper in the long run than a longer battle with the cancer maybe they would agree to it.
If you have any questions feel free to ask. My cea and ca-125 are well with the normal limits and I have my next CT scan this Wednesday...so will know more then. However, at my last ct scan in December my tumors had shrunk quite a bit. My local Onc was thrilled with my progress...actually he did not expect such good results.  Julie