On my 3rd reoccurance

I was originally informed I had ovarian cancer in May 2003, had complete hystorectomy 6 rounds of chemo with carbo and taxol.  CA125 came down below 30, everything good until August 2006  CA125 was up at about 550, started in with carbo and taxol again and on my 8th treatment had a reaction to carbo so finished out the set of 6 treatments with just taxol.  CA125 did go down under 30 until June 2008.  And then it was up at 1300.  Started a treatment of topotecan and a test drug called Sorafenib.  I had a reaction to the Sorafenib so they took me off of it and tryed just the topotecan.  While on this combination my CA125 did go down pretty good at least in the 100's.  But on just the topotecan my ca125 started to go up.  So January 2009 started taking Doxil and my CA125 in February was at 3300 in March it was down to 2300 and today it was at 2900 and I am to have another treatment tomarrow.  I am sure they wont give me any more doxil but am not sure what we will try now.  The last ct scan did show some fluid in my stomach but no tumor of any size.  I really hope tomarrow they order a pet scan to see if there is any change.  I have friends and family telling me to get another opinion but I am just not sure what to do.  I am in my late 40's and have a very positive attitude but am starting to get tired of dealing with this.  But what is the alteritive?  I need a cancer Jeanie to tell me what to do and where to go!!!

Bless Your Heart!  I can't image what you are going through - the ups and downs.  My husband just finished treatment - does the PET scan on 4-17 to see if any is left.  My prayers go out to everyone on this site.  Good luck and God Bless you.

Cheryl  Oklahoma City

Hello my dear, so sorry you are having such a time. I have recurring ovarian cancer in my lymph nodes and have just had 3 cycles of PEG Irinotecan on a study. it is also called NKTR-102. I have had great improvement. Are you in an area where you could get on a study?

Best wishes to you,

Ann in So. Cal.

Hello!! I am so sorry to hear about your reocurrance. One thing I can suggest strongly, is that you ask the dr to check the lining of the abdomin. My mom had cancer there and it went undetected however they could identify the cancer cell as ovarian, but it actually was a very rare form of cancer in the lining of the abdomin. the reason it went undetected is because it causes tiny microscopic blisters--millions of them-- like places that are hard to find in the lining. The side effect is fluid build up in the belly area. She felt like she was 6 months pregnant because of the swellling. I hope this helps!!! Take care and keep me posted!!! Cheryl Tampa FL

 

On 4/3/2009 Cheryl Lynn wrote:

Hello!! I am so sorry to hear about your reocurrance. One thing I can suggest strongly, is that you ask the dr to check the lining of the abdomin. My mom had cancer there and it went undetected however they could identify the cancer cell as ovarian, but it actually was a very rare form of cancer in the lining of the abdomin. the reason it went undetected is because it causes tiny microscopic blisters--millions of them-- like places that are hard to find in the lining. The side effect is fluid build up in the belly area. She felt like she was 6 months pregnant because of the swellling. I hope this helps!!! Take care and keep me posted!!! Cheryl Tampa FL

Cheryl

That is very interesting, I just had a ct scan 4-2-09 so maybe something will show up and can be treated, instead of treating just the high ca125.  I will keep your information in the back of my mind.

Good morning!  I feel your pain & totally understand what you're going through.  I was diagnosed w/Ovarian Serous Borderline Tumors w/Low Malignant Potential at 32 yrs old in 1998 - total oophorectomy done.  I was good for 6 yrs until it came back in '04.  Total of 3 surgeries, Carbo/Taxol, Arimidex, just finished Gemzar (took CA125 down to 20!).  They were about to give me a chemo break, & my CA125 started rising again (now at 50).  Had a CT w/a follow-up PET which shows disease beginning to grow again (8 areas).  Wanted to give you background so you know you're not alone.  I have 2 dr appts in 1-1/2 weeks so we'll see what they want to do but they did mention having good results w/Avastin (given along with another chemo).  Push for the PET - it will light up cancerous areas & is a good backup to the CT - my PET confirmed some questionable areas.  Also, don't be afraid to get a 2nd opinion.  Take in all info, compare notes & decide how you want to proceed.  I have been sharing the name of another type of therapy w/a few folks, too - knowledge is power - the principles they speak of are very interesting.  Check out www.gerson.org.

I wish you all the strength you need to continue to fight.  I am determined not to let this dreaded disease win!  Remain hopeful & strong.  There are people out there who beat it!!!!

Bless you as you continue the fight.

I have recurrent endometrial cancer and also did the carbo/toxol chemo.  until side effects were too great and it wasn't working well.  Did Doxil for over a year and had real good results with it.  I found that it takes at least 3 months for the Doxil to really do it's thing.  You might give it a little longer.  Compared to other treatments, it's reasonably user friendly.  I moved on to Arimidex and have been on it a year.  It is no longer helping and I am looking for what to try next.  Meanwhile, my CA125 numbers continue to climb.

It's a bear to try and learn then decide what's best and unfortunately I am not getting much input at the moment.  I have heard of using Avastin coupled with another chemo but can't recall the name of it.  I heard it's pretty harsh but not as tough as carbo/toxol.

 Hang in there!

I'm so sorry to hear of your setback.  I think a second opinion would be really good.  I see an oncologist regularly and a specialist GYN/oncologist every 6 months just to make sure everyone is in agreement on my treatments.  Perhaps your oncologist is waiting too long to give you chemo.  The 125 should be checked on a more regular basis.  When my number goes above 50, I get a PET scan and chemo.  Gemzar/Carbo is the chemo I am on now (for 9 mo.), number down to 8, Pet scan this week showed 90% of cancer not there.  For me this is a miracle.  If we can just get that last little spot.

I have been battlling this for 3 years, and I see you have been doing it longer.  I think you have done well, and with proper treatment there is still a change to get those numbers back down.  Good luck, have hope and pray for a miracle. 

I know how it feels to see your  cancer come back. I'm still on treatment for almost 4 years now;  for my nasopharyngeal cancer which came back invading my right pleura after being treated with radiotherapy 100%.

 

 It sucks so much that you don't even want to cope with it when you hear the bad news. All i can humbly suggest is that you have to hold on for at least your loved ones. That's what i do and it gives more hope than thinking about the beautiful days you're gonna see in the future..

My Mom has been battling ovarian cancer for three years as well -- I feel your frustration and fear. She has just come to a crossroads as well She has been on Topotecan, Gemzar then Doxil with her recurrence, all of them worked for a while to get the numbers down, but the Doxil stopped working and with her CA 125 going up we are trying to decide what comes next. Here doctor recommended Avastin, but it is not FDA approved for ovarian cancer so some insurance providers will not approve it. This happened to my mom and if she was to go this route her doctor would have to appeal - so be aware of that before you go this route, it can cost up to $10,000 at dose. Her doctor also suggested Etopicide which is taken in pill form. But she is considering a treatment that her surgical oncologist specializes in called HIPEC - it is a surgical treatment where they debulk any tumors and then run a heated chemo through the abdominal area - they are having a lot of success with longer survival rates. I would be curious if anyone else has heard of this or has had their doctor's suggest it. Thanks for all the info here and good luck with your decision. Blessings to all!