Well, it's back

Lmm041
Lmm041 Member Posts: 33
in Ovarian Cancer #1
My dear wife, Cindy, had her last Taxol consolidation therapy last month. Went to MD Anderson for CT Scan and CA125 today. Several lymph nodes came back positive on the scan. CA125 was only at 9.5. Her CA125 had previously ranged from 2-4 during our one year of remission.

New plan is to go on carboplatin/gemzar/avastin cocktail if insurance company allows for avastin. If no avastin, then she will start gemzar and cisplatin.

Has anyone been on either of the above mentioned treatment plans? Success?

We are devastated.

Morris

Comments

  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #2
    It utterly sucks that it is
    It utterly sucks that it is back. I am NED for now. I wonder how long since most experience very little time without cancer growth. I wish you the best with the new cocktail.
  • antcat
    antcat Member Posts: 270
    #3
    I'm sorry
    So sorry to hear about your wife. It's always a little discouraging when a person hears that their cancer has come back. We sit there, get the chemo and then have to hear, it came back. It is truly devastating. I know because I've been on chemo since last October with no breaks and the tumors still grew somewhat. I've gotten to the point where I'm going to tell the doctor I need a "chemo break" to give my body a rest. Last year I was on Carboplatin and Gemzar, and unfortunately after 2 cycles of Carbo I had an allergic reaction to it because I was on it twice before. They had to stop that and just give me Gemzar. Unfortunately, the Gemzar didn't work on the tumors, but that's not to say it won't work for your wife. At the end of the year I went on Avastin/Cytoxan and after 6 months of Avastin, it didn't work as the dr. hoped. So, I went off of Avastin. I understand that M.D. Anderson is one of the best facilities to be at, I could go there with my insurance coverage, but it's a little too far for me. Good luck and please keep us posted.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #4
    antcat said:

    I'm sorry
    So sorry to hear about your wife. It's always a little discouraging when a person hears that their cancer has come back. We sit there, get the chemo and then have to hear, it came back. It is truly devastating. I know because I've been on chemo since last October with no breaks and the tumors still grew somewhat. I've gotten to the point where I'm going to tell the doctor I need a "chemo break" to give my body a rest. Last year I was on Carboplatin and Gemzar, and unfortunately after 2 cycles of Carbo I had an allergic reaction to it because I was on it twice before. They had to stop that and just give me Gemzar. Unfortunately, the Gemzar didn't work on the tumors, but that's not to say it won't work for your wife. At the end of the year I went on Avastin/Cytoxan and after 6 months of Avastin, it didn't work as the dr. hoped. So, I went off of Avastin. I understand that M.D. Anderson is one of the best facilities to be at, I could go there with my insurance coverage, but it's a little too far for me. Good luck and please keep us posted.

    gosh darn it
    I am so sorry for her reoccurance. I hate this, but we must keep on fighting and praying. Keep us posted please..val
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #5
    I have no experience with
    I have no experience with the "cocktail" you mentioned (other than the carbo I took during first line treatment) but I just wanted to say how sorry I am about your wife's recurrence.

    This is why we spend our entire lives, once diagnosed, looking over our shoulders. If ever there was a disease that sucks the fun out of life, it's this one. Even when we are NED, we can't stop worrying or thinking about it, and "what if."

    Waiting fo rthe results of very scan and every blood draw makes a nervous wreck out of me. Waiting until I can have the next scan and/or blood draw makes a nervous wreck out of me. I hate that we have to live like this, and I hate that your sweet Cindy has been bitten by the beast again. Don't give up. Never, ever give up.

    Carlene
  • sarahb74
    sarahb74 Member Posts: 81 Member
    #6
    I'm so sorry it's back
    I still remember the shock I felt when my remission ended, even though I was expecting it. Whichever treatment she's given I hope it works well for her.
  • carolenk
    carolenk Member Posts: 907 Member
    #7
    sarahb74 said:

    I'm so sorry it's back
    I still remember the shock I felt when my remission ended, even though I was expecting it. Whichever treatment she's given I hope it works well for her.

    Another opinion
    If I were in your wife's situation, I would insist on checking those lymph nodes--either by biopsy or by PET scan. I have heard stories of people who had enlarged lymph nodes removed and they were calcified not malignant.

    Somewhere on this discussion board is the UK research that showed no difference in the outcome for women w/ recurrent OVCA who went back on chemo earlier (when their CA-125 hit 70) compared to those who waited 4-6 months after their CA-125 hit 70 (and went on chemo based on their symptoms rather than their CA-125 level). You didn't mention whether or not your wife was symptomatic.

    Since your wife's CA-125 is so low, it looks like she would probably be fine for at least a month or two before going back on chemo. I would take a couple of months off chemo anyway to give my immune system a break. But that's me.

    Sorry that you find yourself in this situation.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #8
    carolenk said:

    Another opinion
    If I were in your wife's situation, I would insist on checking those lymph nodes--either by biopsy or by PET scan. I have heard stories of people who had enlarged lymph nodes removed and they were calcified not malignant.

    Somewhere on this discussion board is the UK research that showed no difference in the outcome for women w/ recurrent OVCA who went back on chemo earlier (when their CA-125 hit 70) compared to those who waited 4-6 months after their CA-125 hit 70 (and went on chemo based on their symptoms rather than their CA-125 level). You didn't mention whether or not your wife was symptomatic.

    Since your wife's CA-125 is so low, it looks like she would probably be fine for at least a month or two before going back on chemo. I would take a couple of months off chemo anyway to give my immune system a break. But that's me.

    Sorry that you find yourself in this situation.

    http://pubweb.fccc.edu/strong
    http://pubweb.fccc.edu/strongtogether/?p=1198
  • Lmm041
    Lmm041 Member Posts: 33
    #9
    carolenk said:

    Another opinion
    If I were in your wife's situation, I would insist on checking those lymph nodes--either by biopsy or by PET scan. I have heard stories of people who had enlarged lymph nodes removed and they were calcified not malignant.

    Somewhere on this discussion board is the UK research that showed no difference in the outcome for women w/ recurrent OVCA who went back on chemo earlier (when their CA-125 hit 70) compared to those who waited 4-6 months after their CA-125 hit 70 (and went on chemo based on their symptoms rather than their CA-125 level). You didn't mention whether or not your wife was symptomatic.

    Since your wife's CA-125 is so low, it looks like she would probably be fine for at least a month or two before going back on chemo. I would take a couple of months off chemo anyway to give my immune system a break. But that's me.

    Sorry that you find yourself in this situation.

    CA125 = 9
    My wife is not symptomatic. Her CA125 did more than double within a month from 4 to 9. She had a total of 6 enlarged lymph nodes, 5 in the abdomen and one in the pelvic area. I will loo for the study you mentioned because she needs some time to heal. Thanks for the info.
  • carolenk
    carolenk Member Posts: 907 Member
    #10
    Lmm041 said:

    CA125 = 9
    My wife is not symptomatic. Her CA125 did more than double within a month from 4 to 9. She had a total of 6 enlarged lymph nodes, 5 in the abdomen and one in the pelvic area. I will loo for the study you mentioned because she needs some time to heal. Thanks for the info.

    The study doesn't include
    The study doesn't include women with enlarged lymph nodes; however, I think it is still appropriate to discuss the research with your wife's oncologist. It appears that many of the the UK survivors on this discussion board are under the care of oncologists who are are practicing based on the new evidence.
  • jbeans888
    jbeans888 Member Posts: 313
    #11
    I am sorry to hear this. We
    I am sorry to hear this. We all live with the fear of a recurrence and if so when will it be. Just keep on praying and support her. this is all we can do while we hope for the best results.
  • sarahb74
    sarahb74 Member Posts: 81 Member
    #12
    carolenk said:

    The study doesn't include
    The study doesn't include women with enlarged lymph nodes; however, I think it is still appropriate to discuss the research with your wife's oncologist. It appears that many of the the UK survivors on this discussion board are under the care of oncologists who are are practicing based on the new evidence.

    I'm from the UK
    and that's what my oncologists do. They wait until I'm symptomatic before discussing further treatment. Then I had a choice of starting treatment immediately or having a holiday (vacation?) first. For me getting away was important so I had 2 lovely weeks in the north of England before I started on Doxil. Apart from being a bit tired I felt fine the whole time. There was no rush to do anything and they were quite certain it made no difference to my outcome.
  • Mwee
    Mwee Member Posts: 1,338
    #13
    cisplatin/gemzar results
    First, I know how hard it is to hear that you have to fight this again. I was 3 1/2 years NED when I needed to go back into chemo treatments. I've been 21 months having chemo treatments, that's the bad news... but the excellent news is that I'm holding stable. I've currently been on gemzar/cisplatin. Do I want to spend half my month recovering from chemo?.... NO!!!, but I want to spend the other half enjoying my family and living my life with joy. Please let me know if I can help.
    (((HUGS))) Maria
  • kayandok
    kayandok Member Posts: 1,202 Member
    #14
    Dear Morris,
    I'm sorry to hear this news. I know very well the feeling of devastation. It is crushing and you feel like you won't be able to function again, emotionally. After you have cried hard, yelled, and talked a LOT, saying alot of "WHY ME?!"'s then you will be able to come up for air and slowly move on one step at a time. And there is a lot of hope! Keep believeing and keep hoping.

    It sounds like your doctor team is being fairly aggressive. My tumors are stage 3 and I have always been agressive for that reason. I am a 4 plus year survivor with a lot of treatment under my belt. For me it has worked out well. I did do cis/gem, and side effects were harsh (I did acheive a very low/NED status for a time), but did not do the avastin with it. Avastin is ordered for me this time, after a couple cycles, and if I can find a way to get it, I will take it.

    Wishing you peace and lot's of encouragement! It will come from unexpected places.
    Hugs,
    kathleen
  • Lmm041
    Lmm041 Member Posts: 33
    #15
    kayandok said:

    Dear Morris,
    I'm sorry to hear this news. I know very well the feeling of devastation. It is crushing and you feel like you won't be able to function again, emotionally. After you have cried hard, yelled, and talked a LOT, saying alot of "WHY ME?!"'s then you will be able to come up for air and slowly move on one step at a time. And there is a lot of hope! Keep believeing and keep hoping.

    It sounds like your doctor team is being fairly aggressive. My tumors are stage 3 and I have always been agressive for that reason. I am a 4 plus year survivor with a lot of treatment under my belt. For me it has worked out well. I did do cis/gem, and side effects were harsh (I did acheive a very low/NED status for a time), but did not do the avastin with it. Avastin is ordered for me this time, after a couple cycles, and if I can find a way to get it, I will take it.

    Wishing you peace and lot's of encouragement! It will come from unexpected places.
    Hugs,
    kathleen

    Thanks Everyone
    Thanks everyone for your words of support and encouragement. Cindy is starting her treatment plan this Thursday. She will be taking Carboplatin, Gemzar, and Avastin every 21 days, with an extra treatment of Gemzar every 8th day after the 21 day cycle infusions.

    That's a lot of chemo, I hope she can take it. Most of all I hope for a clear CT in 3 months.

    Morris

Discussion Boards