For Livalot (Elizabeth)

livealot said:

so helpful
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

I was hoping that Diane would see Liz's post & contact you.
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!)

livealot said:

so helpful
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

Chemo Options for Recurrence
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.

Songflower said:

Elizabeth
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

thanks for all you responses.
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 said:

thanks for all you responses.
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

Elizabeth
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