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For Livalot (Elizabeth)

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Welcome to the group Elizabeth. I had a recurrance about the same time you did. It is in the peritoneum. I am now on doxil and avastin and having a good response. The CA 125 does not come down immediately but it takes a few cycles. Mine went down to the normal level after the second cycle. Went up 10 points after the first; you can't let that drive you crazy. I find these chemo's much easier to tolerate than carbo/taxol although I know we are all different.

I am being considered for HIPEC. It is a surgical procedure in which they open you up; strip the peritoneum and instill heated chemotherapy. After that you have six months of chemo. With your history you may be a candidate for this and it may be something to consider. I guess the surgery is really tough. Sometimes they get permenant remissions with it. They do it for ovarian, colon, and appendix cancers. Thus far they are considering me a candidate.

I am learning to live with cancer. It is not the life I wanted but I am adjusting as is my family. I have had so much love from family and friends in the last year that I wouldn't give up the experience for anything.

You have been through alot but you can do it. I also had breast cancer 11 years ago. My prayers are with you.

Diane

livealot's picture
livealot
Posts: 19
Joined: Jan 2010

Diane,
thanks so much! your post is very helpful. it does give me more discussion points for our (my hubbie and me) appt. with the onc. today. I'm in No. VA- DC area. before we knew for sure that this was uterine ca, we thought it may be appendix ca since one of my largest tumors was there. i read up on the surg and treatment you mentioned. I think the doc. that started this is in my area. as a matter of fact, i spoke to my husband about this option 2 days ago as a possible option to inquire about. did you have the optimal debulking surg too? The surgeon (gyn/onc) is not leaning toward surgery since he feels that one was just 1 year ago and it was so massive.
I am so with you about my experience of the past year and a half. it truly has been an amazing and beautiful journey. I would never have known the love and caring of family and friends otherwise. I would not trade that. But I really do want to come out of this on the other side. this can't be easy for you having dealt with the breast ca already, but you sound very peaceful and positive. I think I feel pretty much like that too.
thanks so much for your post!!
Elizabeth

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

Diane, I was watching for a post from you. You've been on my mind ever since I saw Liz's post and thought you two were in a similar place. & also since my oncologist said I just MIGHT have a 2nd primary cancer now: breast cancer (not 'mets' but a new cancer!). The breast cancer idea even he said is a long shot but the lymph node that lit up under my arm is typically associated with primary breast cancer. Nothing lit up on my breasts on Monday's PET scan and my mammogram this year was clear, so I don't think that will be the outcome, but it is interesting that it even could be. I know those with breast cancer are at risk for endometrial cancer; but is it AS true the other way around? Anyone know?

Anyway, I am glad you found each other, Liz & Diane, and know that we are all here for you both too.

I got an email from my chemo-onc saying that he conferred with the breast cancer surgeon and the recommendation is for me to have a sonogram-guided needle biopsy of that underarm node. I shot back an email reminding him that he said he would not trust in a needle biopsy if it came back benign and that we had additional reasons for wanted the whole node removed (assays & just to have it GONE from my body if cancerous). He emailed back that he agrees with me, but that he defers to the greater expert here. If they can make it happen in the next 6 days I may have it before I leave for my cruise next Thursday, although my husband is against that plan. I see my gyne-onc Monday so we'll see what he says. Meanwhile it is gorgeous out and I am picking up the grandkids at school since the ice cream stand is open for the season. (Don't tell Claudia I'm getting a cone! HA!)

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

Silly girl, eat what you want, just follow it with a cup of green tea with lemon, sans the sugar if you can.
love
C'est moi

wonderingalice
Posts: 49
Joined: Feb 2010

Hi Elizabeth,

I wanted to respond to you also, since my mother has had a recurrence of Stage III UPSC. A new tumor was found on her bladder nine months after she completed radiation and chemo. She had some complications and a hard recovery from the second debulking surgery (the first being complete hysterectomy) and they were hesitant to start her on chemo again, but the tumor growth was picking up speed so decided to go ahead with chemo.

Her insurance would not approve Avastin but she is on a very new drug called ixabepilone (brand name Ixempra) previously indicated for platinum-taxol resistant metastatic breast cancer. Her last CT scan showed favorable results - not a lot of size reduction but at least holding it at bay.

There are options out there, and this cancer seems to be as individual as fingerprints.

Stay hopeful.

~Al.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Fight for the AVASTIN. Don't take no from your insurance - appeal and appeal some more. Get your doc to advocate for you.

Mary Ann

wonderingalice
Posts: 49
Joined: Feb 2010

Thanks for the encouragement - I know the chemo center was still appealing the Avastin denial; however, we are concerned about some of its side effects and she is having a good response to the single-agent Ixempra for now. We will keep the Avastin as an idea in the arsenal, for sure.

~Al.

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I live in Yorktown Virginia. My daughter lives in Arlington. Dr. Hoefer is my oncology surgeon and Dr. Dedmond my gyn/onc. We really are not that far apart.

This goes for anyone, if you are battling insurances for avastin have the Doctor state serous uterine cancer is like serous ovarian cancer; treated the same with avastin for recurrance. This will help to get it. From what I have read it has had success with recurrance of serous uterine and ovarian cancer.

I am taking a painting class in June and writing class and traveling to a wedding and doing chemo. Should be a busy month for me. We had friends for dinner last night.

I will keep you in my prayers.
Diane

livealot's picture
livealot
Posts: 19
Joined: Jan 2010

I really appreciate your input. many of my questions were answered in this exchange. the issue IS having insurance cover the Avastin. and of course my doc. said he'll appeal to the company (CIGNA) and feels they may cover it, but he wants me to see another guy in Baltimore, Dr. Wm. McGuire. he was at Johns Hpkins, then MD Anderson and now at a hosp. in Baltimore again. My doc. wants me on Carboplatin again with either Doxil or some drug that starts with a G... with a topper of Avastin. He'd like me to be able to get in a study with McQuire to get the Avastin covered (and he is a specialist with UPSC). so I do hope to hear from the office tomorrow and really hope I can get scheduled to see him wed. or thurs. and start chemo next week. they are all really on the ball about getting records, etc. moved for me for him to review. they are all very helpful!!
Diane, I'm taking a painting class on Thursdays now since Jan.using oils and I LOVE IT! I have never painted in my life but have always wanted to. I love everything I paint!! it's so funny since I have no expectaions and feel just joy with it all. You'll have so much fun wioth it. My daughter (18) started taking the class with me about 6 weeks ago. she is so gifted and decided to minor in art at College of Charleston where she will start in the Fall.
I've been rather detached from the recent diagnosis and seem to be going about my business dealing with all the appts., and doing what needs to be done. also, socializing with friends alot! Tonight I think it started really hitting me and I cried for the first time and am feeling rather scared. I'm really trying to stay positive but I'm also a realist and I need something to grab onto that I can believe is real AND positive. the first go round I really hoped and thought I'd get 10 more years. a recurrance 7 mos. after chemo has me thinking it's a lot less time than that.

I'm sorry to be a downer tonight. I am not usually like this. I so admire all you ladies out there. thanks for "listening" and for the prayers and good thoughts. I so appreciate that.
take care,
elizabeth

livealot's picture
livealot
Posts: 19
Joined: Jan 2010

Diane, or anyone else so inclined, please call and we can get together when you visit your daughter. I don't know about the rules here, but I will add ny email for contact, askelizabethLTC@verizon.net. I certainly will contact you if I go to your area as well.
elizabeth

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

Believe me you are not a downer. This diagnosis takes time for you to process and believe me you will still be processing it even during treatment. Tears are a natural part of all this...I think I cry for at least 2 minutes every day for many reasons. Thinking of the next treatment, thinking of whether I will see my boys grow up, celebrating a beautiful warm day and countless other things. Let it spring, and you will move past it...

Hang in!

Laurie

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

We all have down days. I am seeing a therapist and she told me to cry for 15 minutes twice a day. Crying is good for you. We have to grieve for the life we lost; now it's appointments, pills, labs, and scans. I have no idea how much time I have left. I think it's the hardest thing to cope with. When I had breast I just carried on. I did alot of things I always wanted to do. And the years past and I made it. But then this slammed me down; I was completely shaken with this serous cancer. We all have really down, sad times and we CRY! I've decided it's OK; I actually do better after a good cry. I prayed to my Dad this morning; he died of colon cancer and I really miss him. I know he helps me when I get like this. I ask Mom if he ever got down (because he never seemed to) but she says yes he did. Even Randy Pauch cried in the shower (I always wanted to thank him for that; I thought he was super human)

It's OK to cry and OK to have a therapist to talk to. You can't go through this skipping and hopping. Chemo is rough on me. Even the easiest ones. I hope I like painting; she gives us a choice of acrylics or water color. I might try the watercolor. Remember: a new friend is thinking of you. I've asked my Dad to help you. He died of colon cancer. He lost his father at age 2 and he was a country boy, a wonderful, brilliant, kind man that loved women and would do anything to help his girls or any woman with a flat tire. I feel some of his strength beaming your way!
Diane

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