Need advise for stage IV recurrence treatment

Merridy
Merridy Member Posts: 3
edited March 2014 in Ovarian Cancer #1
Hi, I am new to this site and I need advise ASAP. I was diagnosed and had surgergy for stage IV ovarian cancer in late Oct. 2008. I had 6 rounds of carbo and taxol and then 12 more rounds of continuation treatments of taxol. My CA 125 never dropped below 50 but my CT scans were NED and I did great with chemo except of very bad peripheral neuropathy in my feet. Right after my last chemo my CA 125 started up and am three months out of chemo and my CA 125 is over 100 and my PET/CT scan showed my addomen is filled with small tumors and my doctor said operating is not an option. I have to make choices by Tuesday of what I want to do next. I am negative for the cancer genes. I have been looking at Doxil and Avastin, plus I am wondering about having a tumor biopied and tested to see what chemo's work best. What has worked for you wonderful ladies? I have been reading all your comments and they are so great. Thanks for any help I can get. I am 67 and live in Ohio near Columbus. I am a Christian and have a fantastic family that I would like to stay around for a little longer. Blessings, Merridy

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    I took just taxol as a single agent (WEEKLY) for 1st recurrence.
    Doxil might be a great choice for you. Have you had assays done of your tissue? With such a fast recurrence you could be overexpressing HER2neu, and that would make you a great candidate perhaps for Herceptin (typically a breast cancer drug but in clinical trial for other HER2neu+ cancers.)
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    similar circumstance
    I too was dx'd stage IV Sept. '08. 5 carbo/taxol IV followed by 3 IP cisplat/taxol. First recurrence confirmed by biopsy early Dec. '09. I too am BRCA negative. Started Doxil Jan of 2010 did not work for me. With my history of bowel obstruction and temporary illeostomy my oncologist does not recommend Avastin for me at this time. I just started Gemzar/Carbo. I completed one cycle. It has been real hard on my platelet count. I never had issues with low blood count before so this is a bit frustrating for me. My ca125 is now unreliable for me as it was at 10 when I had a confirmed recurrence. So I have little advice for you. I never had an assay of my tumor done although it sounds like a great idea.

    Doxil was very easy for me. Foot rash was the extent of it. If your doctor recommends giving it a try it be worth it. I am told due to the low side effects women can stay on this drug for awhile. It can make your ca125 jump around though so don't be alarmed. I think I will speak with my oncologist on Monday about having an assay done.

    GOOD LUCK!
  • Merridy
    Merridy Member Posts: 3
    #4
    nancy591 said:

    similar circumstance
    I too was dx'd stage IV Sept. '08. 5 carbo/taxol IV followed by 3 IP cisplat/taxol. First recurrence confirmed by biopsy early Dec. '09. I too am BRCA negative. Started Doxil Jan of 2010 did not work for me. With my history of bowel obstruction and temporary illeostomy my oncologist does not recommend Avastin for me at this time. I just started Gemzar/Carbo. I completed one cycle. It has been real hard on my platelet count. I never had issues with low blood count before so this is a bit frustrating for me. My ca125 is now unreliable for me as it was at 10 when I had a confirmed recurrence. So I have little advice for you. I never had an assay of my tumor done although it sounds like a great idea.

    Doxil was very easy for me. Foot rash was the extent of it. If your doctor recommends giving it a try it be worth it. I am told due to the low side effects women can stay on this drug for awhile. It can make your ca125 jump around though so don't be alarmed. I think I will speak with my oncologist on Monday about having an assay done.

    GOOD LUCK!

    Thank you Nancy
    Thank you so much for your comments. I am glad you had good results with Doxil. I am going to ask by doctor about having the assay done. Have a beautiful weekend. Blessings to you. Merridy
  • Merridy
    Merridy Member Posts: 3
    #5
    lindaprocopio said:

    I took just taxol as a single agent (WEEKLY) for 1st recurrence.
    Doxil might be a great choice for you. Have you had assays done of your tissue? With such a fast recurrence you could be overexpressing HER2neu, and that would make you a great candidate perhaps for Herceptin (typically a breast cancer drug but in clinical trial for other HER2neu+ cancers.)

    Herceptin
    Linda, I will ask my doctor about having an assay done and about Herceptin. I have never heard of it before. I see the ocean behind you. I was born and raised in Newport Beach and love the ocean - the sound, the smell, the feel of it on my skin. Have a great day. Blessings, Merridy
  • saundra
    saundra Member Posts: 1,370 Member
    #6
    Treatment
    I am also in the same spot. I started cistoplatin + gemsar Thurs. with the hope that it would slow my new fast growing 1 cm tumor. In Texas, Avastin is not an option. Doxil takes too long to work. Saundra
  • msfanciful
    msfanciful Member Posts: 559
    #7
    Hello Merridy,
    I just
    Hello Merridy,

    I just completed weekly taxol maintenance for 12-weeks and am now in remission .

    I also had my cat-scan to show that no tumors are present after the treatment as well.

    I am a stage IV ovca survivor since 2007. Even though our circumstances of the cancer are a bit different I'm just offering a suggestion.

    I have since been through 8 months of carbo/taxol in 2007. Doxil/carbo/avastin in 2008. Etopocide (This did not work for me it's an oral chemo medication). And of course I just finished taxol for 12-weeks.

    Good luck and prayers to you in making your decision

    Sharon
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
    saundra said:

    Treatment
    I am also in the same spot. I started cistoplatin + gemsar Thurs. with the hope that it would slow my new fast growing 1 cm tumor. In Texas, Avastin is not an option. Doxil takes too long to work. Saundra

    Avastin is not a MEDICARE
    Avastin is not a MEDICARE option in Texas, but if you have other insurance, it may be covered.

    My secondary will cover it (I am in Dallas/Ft Worth), but only at 80%. My co-pay (20%) would still be a lot of money.

    If it gets to a point where my doctor thinks Avastin would help, I will simply "move" to another state.

    Carlene
  • kayandok
    kayandok Member Posts: 1,202 Member
    #9
    Welcome Merridy!
    It sounds like you have already been warring this disease for a while. I was dx 3C 3 years ago this week. I have had carbo/taxol, gemzar/cisplatin and most recently doxil and then doxil/carboplatin. They have all worked, although only NED with the carbo/taxol.

    It think tumor biopsy is a good idea, especially if your insurance covers. (Clearity Foundation will do a blueprint to check to see how well your tumor does on avastin and some of the newer drugs.) I had a chemo assay and blueprint done, and it does give the docs good info. Bottom line though, you have to try it to really know if it will work. If you can get avastin, I would say go for it!!! (I am still working on trying to get it myself.)

    Hugs and Prayers,
    kathleen

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