rapidly exhausting chemo options for UPSC

advocate4mom
advocate4mom Member Posts: 3
edited March 2014 in Uterine/Endometrial Cancer #1
My 70 year old mother was diagnosed with stage 3C UPSC in early 2009 (2 prior breast cancers in early 2000's) - went to her OB/GYN at first sign of bleeding, yet the cancer was really far along (in lymphnodes including peri-aortic) - total hysterectomy, followed by 6 rounds of cisplatin/taxol, followed by 25 whole abdominal radiation - we felt so lucky to have found a great Gynecological Oncologist who took a very aggressive strategy. With a clean bill of health in early 2010 we had high hopes for a few good years before we might see this ugly cancer again.

Unfortunately, this past summer, my mom started with a cough that would not go away - long story short, the uterine cancer had spread to her lungs, liver and bones. Since the recurrence was so fast, the oncologists agreed that the platinum-based chemo that is so effective for UPSC was no longer an option. Plus, it really took a toll on my mom's overall strength/neuropathy. We moved onto Doxil. After just 2 treatments this fall she was rescanned and we were devistated to learn that there was a 'total progression' of the disease (further spread in lungs/liver/more bones, etc.). It was recommended she not continue Doxil despite only having had 2 treatments.

We've now moved on to Topotecan (given once weekly for 3 weeks and then an off a week) which she is tolerating a whole lot better than the Doxil. I'm praying on the Topotecan to at least slow the progression. I don't see a whole lot of other options beyond this out there for this particular type of cancer - are there other options you know of if the Topotecan is not successful? - we're really just looking for a bit more time/quality of life at this point.

I've never posted before, but I've read many of the UPSC threads and want you all to know that they have been so helpful - my mother is the type of person who just wants hope and has no interest in researching or talking about the disease, but I'm one of those people who has to research everything. Your words have given me not just useful information, but a lot of strength and hope over the last year - it's comforting not to be alone in this.

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    Could she try taxol as a single agent, taken weekly?
    I am in a similar boat as your mother. It gets pretty scary when you try a couple types of chemo that don't work and allow disease progression even as you are getting treatment. Doxil didn't work for me either and my CT/PET showed disease progression after 3 rounds. ((((hugs)))). With my 1st recurrence we tried taxol all by itself, and after 10 weeks of weekly treatments my next CT/PET showed the cancer beaten back to NED and I was able to take a little break from chemo. 3 months later my next CT/PET showed the same lymph nodes lit up again and I went back on the weekly taxol for 7 more infusions. Unfortunately after the 3rd taxol this time, my CA125 started going slowly up and it turns out taxol was no longer effective for me. But for awhile it worked good, and that might be an option for your mom. The fractionated dose made it an easy chemo to tolerate; I had no side effects at all except baldness and some fatigue.

    Has your oncologist mentioned Gemzar? That wil probably be next for me if the carboplatin I am currently getting doesn't work or I get allergic to it. There are all hormone therapies (magace, tamoxifen) so you may want to request a needle biopsy for a tissue assay to see if your mom's cancer is ER+ or PR+, also testing for HER2 since she may be able to take Herceptin if her cancer is HER2+. Your mother hasn't run out of options yet; try not to dispair. Every kind of chemo doesn't have to work as long as ONE of the things you try does. (((hugs)))
  • bonniesue
    bonniesue Member Posts: 124 Member
    #3
    pathology advocate4mom
    Sorry to hear of the change of status and then spreading-especially given the early 2010 news. perhaps getting the pathology parafilm block and having it tested to see what treatment so to avoid toxicity. Do not know who does this but calling an oncologist at an academic institution may help. You and your mom are in my prayers.
  • advocate4mom
    advocate4mom Member Posts: 3
    #4
    lindaprocopio said:

    Could she try taxol as a single agent, taken weekly?
    I am in a similar boat as your mother. It gets pretty scary when you try a couple types of chemo that don't work and allow disease progression even as you are getting treatment. Doxil didn't work for me either and my CT/PET showed disease progression after 3 rounds. ((((hugs)))). With my 1st recurrence we tried taxol all by itself, and after 10 weeks of weekly treatments my next CT/PET showed the cancer beaten back to NED and I was able to take a little break from chemo. 3 months later my next CT/PET showed the same lymph nodes lit up again and I went back on the weekly taxol for 7 more infusions. Unfortunately after the 3rd taxol this time, my CA125 started going slowly up and it turns out taxol was no longer effective for me. But for awhile it worked good, and that might be an option for your mom. The fractionated dose made it an easy chemo to tolerate; I had no side effects at all except baldness and some fatigue.

    Has your oncologist mentioned Gemzar? That wil probably be next for me if the carboplatin I am currently getting doesn't work or I get allergic to it. There are all hormone therapies (magace, tamoxifen) so you may want to request a needle biopsy for a tissue assay to see if your mom's cancer is ER+ or PR+, also testing for HER2 since she may be able to take Herceptin if her cancer is HER2+. Your mother hasn't run out of options yet; try not to dispair. Every kind of chemo doesn't have to work as long as ONE of the things you try does. (((hugs)))

    possible other chemo options
    Thanks so much - glad to know I'm not crazy - when I asked about Gemzar after receiving the news that the Doxil was not working, the Oncologist looked at me funny and asked if I knew if it was valid for UPSC (like I should know this with my degreee in accounting). If the Topotecan doesn't work, I'll press on the Gemzar and single agent Taxol further, as well as on the HER2/ER+/PR+ testing.

    When they identified the spots in my mom's lungs/liver she went to the Oncologist she used for her breast cancers as opposed to her Gynecological Oncologist (who is absolutely fabulous, but further away). I have since learned that all Oncologists do not know all cancers equally well. We are now including a consult with her Gynecological Oncolgist before any decisions.

    Missed 3rd week of first round of Topotecan due to really low Plateletts (40), but they did bounce back this week so we start second round of 3 next week. Any magic tricks to keeping the red blood cells/hemoglobin up - she could use more oxygen/strength - the combination of chemo and disease in the lungs is really taking it's toll.

    As a side, call me niave, but I am floored at the amount of advocacy that has been necessary to ensure the best level of care for my mom - for example, her BP was 78/50 two weeks in a row at the Oncologist, yet no one suggested she stop taking her medication for high BP (I didn't know she was taking until she mentioned it some 10 days later). I actually had to call her PCP myself with her vitals to get approval for her to stop taking the BP medication. Lessons learned - don't assume that all doctors are communicating and be relentless with questions and follow-up.

    Wishing a happy and healthy new year to all.
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #5
    advocate4mom said:

    possible other chemo options
    Thanks so much - glad to know I'm not crazy - when I asked about Gemzar after receiving the news that the Doxil was not working, the Oncologist looked at me funny and asked if I knew if it was valid for UPSC (like I should know this with my degreee in accounting). If the Topotecan doesn't work, I'll press on the Gemzar and single agent Taxol further, as well as on the HER2/ER+/PR+ testing.

    When they identified the spots in my mom's lungs/liver she went to the Oncologist she used for her breast cancers as opposed to her Gynecological Oncologist (who is absolutely fabulous, but further away). I have since learned that all Oncologists do not know all cancers equally well. We are now including a consult with her Gynecological Oncolgist before any decisions.

    Missed 3rd week of first round of Topotecan due to really low Plateletts (40), but they did bounce back this week so we start second round of 3 next week. Any magic tricks to keeping the red blood cells/hemoglobin up - she could use more oxygen/strength - the combination of chemo and disease in the lungs is really taking it's toll.

    As a side, call me niave, but I am floored at the amount of advocacy that has been necessary to ensure the best level of care for my mom - for example, her BP was 78/50 two weeks in a row at the Oncologist, yet no one suggested she stop taking her medication for high BP (I didn't know she was taking until she mentioned it some 10 days later). I actually had to call her PCP myself with her vitals to get approval for her to stop taking the BP medication. Lessons learned - don't assume that all doctors are communicating and be relentless with questions and follow-up.

    Wishing a happy and healthy new year to all.

    Don't Despair
    I just started my 3rd cycle of Gemzar yesterday. Carbo/taxol did not work at all for me. In fact, after 18 weeks of Taxol, along with 6 treatments of carbo, my ct scan showed profuse tumor growth throughout my abdomen and pelvis. All of this happened DURING treatment!

    The Gemzar, thus far, seems to be controlling tumor growth since the ct scan I took in early December (after only one cycle) showed NO tumor growth! So do not despair and always remember that each day that passes brings us closer to new meds etc that might provide the help needed to arrive at N.E.D. By the way, the oncologist that questioned you about Gemzar might need to spend some time in continuing education programs!

    Wishing your mom a new year filled with with hope and positive outcomes!

    Peace and hope, JJ
  • Songflower
    Songflower Member Posts: 608
    #6
    bonniesue said:

    pathology advocate4mom
    Sorry to hear of the change of status and then spreading-especially given the early 2010 news. perhaps getting the pathology parafilm block and having it tested to see what treatment so to avoid toxicity. Do not know who does this but calling an oncologist at an academic institution may help. You and your mom are in my prayers.

    Thinking of your Mother
    There are many options left. Gemzar certainly has been successful for the women here although I have never taken it. I agree with linda; there are different ways to give chemo; lower doses weekly is one and many do better with this option. I had my molecular assay done and nothing showed high response. Doxil showed no response but when we tried it with avastin I had a very good response. Sometimes you just have to try them. You need to go with your mother with anotebook full of questions and write down what he says. The patient who is difficult actually gets better care. You are probably doing this already. I sat by a woman in chemo who could not even say the word cancer. I flip it around in my mouth as part of life. I think it helps take away some of the fear that I think she probably has.

    Bless you. What a wonderful daughter you are.

    Diane

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