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Got my CT/PET results (not good) and started Avastin/Cytoxin today.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I knew my CT/PET from last week would show disease progression since my CA125 went up 550 points to 876 over the last 2 months I was taking carboplatin. And I was right, but at least no additional organs or new lymph nodes lit up. The malignant node in my arm pit shrunk, but the para-aortic node was a little bigger. The real cancer spread was the mets in my liver, which really grew and new spots showed up in the liver. My oncologist estimates that 35% of my liver now has tumors. That sounds so horrible, but he also said that you can have perfectly normal liver function with 90% of your liver cancerous. & my liver function is normal! So although I had significant cancer progression, I feel pretty okay about where I am still. I remain symptom-free with an excellent quality of life, so I figure all I really need from a chemo now is something that can hold me STABLE where I am.

My good news is that my insurance approved Avastin for me and we're adding in Cytoxin because Avastin works better combined with another chemo. I had to pee in a cup for testing before I could get the Avastin this afternoon. The only premed you get with Avastin is benedryl, no steroids or anything. I will get the Avastin infusion once a week for the 1st 3 weeks, and then every other week from then on. Today's infusion was a super-slow drip of 1 1/2 hours, to make sure I wouldn't have a reaction to it. Next Tuesday I'll get the same amount of Avastin with a 1 hour drip, and after that all infusions will just take 1/2 hour. The Cytoxin is a very small dose of 50 mg. given as a pill. (When given for breast cancer you get 500 mg, for comparison.) This mild dose is just to be a catalyst for the Avastin. I take the Cytoxin pill once a day, every day in the morning. With cytoxin, it's important to drink a lot of fluids and pee every couple of hours, no problem for me since I've been drinking a minimum of 64 oz. fluids since I started chemo way way back.

& the timing for my Avastin infusions works PERFECTLY for me to go on my Christmas-present trip to the Dominican Republic with my oldest son at the end of February, as I'll be on my 1st 2-weeks-off schedule when we planned to go! My oncologist said he saw no reason why I couldn't go. It will be so great to have this quality time with my oldest son.

So not the best report, but not nearly as bad as I feared it might be.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Linda,

You are such a beacon of light! Seeing that proverbial half full cup as overflowing with joy! What a lovely trip you have planned! I know it will be so special for you and your son, that your other kids will be lining up for their turn!

Enjoy and thanks for all your openess sharing and advice,

Sara

hopeful girl 1
Posts: 454
Joined: May 2010

Linda,

Well it is encouraging that you are approved for the new chemo plan the oncologist chooses and I think that with your determination and this new plan, it is going to do good things for your body.

That's good to know that the liver cann still function well and normally and that you are feeling good.

I am wishing all good and healing thoughts for you.

Hugs!

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Linda, I'm sure you would have liked much better results but you are still feeling well and enjoying life and that is the best! I think you have good vibes for this treatment and that should enhance its ability to knock the bad stuff back. I too believe if it can be controlled that is as good as a cure. That trip with your son will mean so much for both of you. I had an opportunity to take an adventure with my son a few years back and he still recalls it as a high point of his life. You are still creating memories.
Annie

Cindy Bear
Posts: 560
Joined: Jul 2009

Well, there's lots of positives here as you say. You've got a new treatment plan in place and you've been approved for Avastin. I don't know very much about Avastin or Cytoxin, but I've heard lots of good things about Avastin.. In fact, I think someone was on this very same combo with good results on the inspire.com boards..
It's wonderful that you feel great, are able to go on trip with son, and are still living large. Have a wonderful time. We of course, will all be hoping and praying that this is the ticket to get you back into remission.
Hugs,
Cindy

Ro10's picture
Ro10
Posts: 1388
Joined: Jan 2009

Glad to hear a new plan is in place and you have it started already. Hope you tolerate both drugs well. Did not realize the cytoxin came in pill form.

Sorry to hear about the advancement of the tumors in the liver. It is good to know about the normal liver function with that much of the liver involved. I am glad that you continue to feel great, and are enjoying life.

I am so glad you are still going to be able to enjoy the trip to the Dominican Republic with your son. You two will make some great memories.

You continue to be an inspiration to me, and you remain in my prayers. In peace and caring.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You're such a beacon of light as you're always the ultimate optimist even when things are a bit down. Glad you've got a wonderful and well-thought-out plan in place, as that takes a huge load off your mind,

Happy you can take a "much needed" trip with your oldest son. Time away does help our psychi, doesn't it?

I wish you much success with this new round of drugs and sending many, many positive vibes your way!

Jan
((( hugs )))

Kaleena's picture
Kaleena
Posts: 1048
Joined: Nov 2009

Linda:

I am glad to hear that you are stable and feeling good given the CT/PET scan report. I will continue to pray that you remain symptom free and stable. Enjoy your trip at the end of February with your son.

Linda, you give so much encouragement to people that you don't even know. Your strength and courage is felt by all. Whenever I have had a hard day at work and feel tired, I see all the things that you do and it pushes me to continue on. Thank you.

Looking forward to hearing about your trip with your son and all the great details.

Kathy

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

happy there is an alternate plan. Your positive outlook is hard to beat and that you feel good physically is absolutely wonderful. I had Cytoxin IV for breast cancer - didn't know it had a purpose as a reduced dose orally. Oh, the things we learn on this journey!

I hope this new protocol will shrink those liver tumors and not allow any more to grow anywhere and that you have few side effects. Your trip with your son sounds wonderful.

Suzanne

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

damn this disease and its progression! still, you got avastin approved, and have begun the new chemo regime, and there's every reason reason to believe it will stabilize things, and more, even make a significant dent in the status quo. (from my lips to god's ear) it's so good to hear how well you feel, and that your quality of life remains so high. it's wonderful that your schedule works out so perfectly, that you can take that trip to the dominican republic with your son. sometimes things just work out. most importantly, however, is that this chemo really makes a difference. thinking of you, as always, and hoping, hoping, hoping for the very best outcome.

hugs and sisterhood,
maggie

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

You soldier on. Bravo for you!
Mia

HellieC
Posts: 431
Joined: Nov 2010

Linda
You have been such a positive influence on me and others on this site that it is heartbreaking that you are faced with progression. I have fingers and everything else crossed that the latest chemo will knock it down again.

I hope so much that you continue to feel good and enjoy every day, particularly your forthcoming holiday with your son. Can't wait to hear about it.

Keep socking it to 'em, Linda.

Every good wish and thought winging it's way to you.
Helen

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending continued prayers your way...you are such a smiling warrior to us all :)

Laurie

nempark
Posts: 589
Joined: Apr 2010

Sweet Linda: My dear, may the Great God of this universe give you the power, insight and endurance to carry on your fight, for yourself, for your wonderful family at home and also on this board. I think of you all the time, and I am rooting for you Sweet Linda. Keep strong you did it before and you will be successful doing it again. Lots of love June

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