Let's have a roll call!

SpringerSpanielMom

Yeah, Lyn. I know they mean well and they're scared it can happen to them or their mom, wife, daughter, etc. I just don't care for the "blame" aspect of "if you don't survive, it's your fault". Hogwash.

TeamT

https://csn.cancer.org/discussion/comment/1694950#Comment_1694950

Hi Lyn70,

I'm afraid I wasn't being fair with my sarcasm regarding my R/O leading with "I'm so sorry." Honestly, I think the world of her and felt that is was a very sincere and genuine reaction. My husband and I spent several minutes trying to make HER feel better for having to deliver such bad news. And it gave me something else to focus on while I was digesting the reality of my situation. It was her proactive approach that got this ball rolling as I didn't have any of the classic symptoms. I appreciate that she took my concerns seriously and wanted more information prior to our appointment. The results were clearly not something anyone expected to see so soon after my radiation treatments.

I am also grateful to be connecting with a group that is ready to be offended on my behalf without even meeting me.

Thank you so much! 😊

SpringerSpanielMom

Team T, you said: "I am also grateful to be connecting with a group that is ready to be offended on my behalf without even meeting me." Yes!

SpringerSpanielMom

https://csn.cancer.org/discussion/comment/1694411#Comment_1694411

(I'm not sure why the font is so big??) CMB, did you ever worry that you're not doing enough? Were you more reassured given you received two types of chemo, carbo/taxol and Ifosfamide/Mensa/ Doxorubicin rather than just carbo taxol as most of us get? My gyn onc says they're not treating the sarcoma element any more, but I'm still troubled by the conflicting reports: one study showing carbo taxol was much less effective, and one study saying the opposite: that carbo taxol was not inferior to ifosfamide. Do you you know what factors led your gyn onc to recommend no further treatment after frontline? Do you feel their rec should be updated given new developments? Though as you're several years out, I feel good for you. I've read that if you go 2 1/2 yrs w/o a recurrence (Stages 1-2) or some say 3 full years, you're in pretty good shape. I https://pubmed.ncbi.nlm.nih.gov/31993743/ Should MMMT still be treated with adjuvant taxane-based combination chemotherapy?

SpringerSpanielMom

CMB, I forgot you did external radiation too. So that was really aggressive. Hmmmm.

Harmanygroves

https://csn.cancer.org/discussion/comment/1694935#Comment_1694935

wth. Did the person laugh and say, Just Kidding, Ha Ha!! This is horrible!

cmb

https://csn.cancer.org/discussion/comment/1694962#Comment_1694962

The research that showed paclitaxel/carboplatin are as effective for carcinosarcoma as cisplatin/ifosfamide or other ifosamide combination were reported on after I had finished treatment. So I don't know if the medical oncologist would recommend the same regimen that I had for a patient receiving treatment today. Of course, the combination of what he recommended back then wasn't common either since I haven't read of anyone else getting the same initial chemo combination for carcinosarcoma. Despite the terrible side effects I had during the Ifosfamide/Mensa/ Doxorubicin cycles, I'm glad he covered all the bases up front. Fortunately, none of the side effects lasted beyond the treatment period.

A bigger question for me was whether to do radiation or not. The CT-scan after chemo didn't show any signs of cancer, but both the gynecological oncologist and the medical oncologist really encouraged me to have the radiation, even though they both admitted it wasn't proven to extend survivorship, but rather to reduce the occurrence of the cancer returning to the pelvic area.

While I took their recommendation into account, I also recall my mother telling me that she regretted not doing radiation after her initial surgery for cervical cancer. Of course, she was influenced by the horrible side effects that radiation could cause that she saw while working as a nurse's aide in a hospital back in the 1960s and early 1970s. But my radiation oncologist explained that the radiation methods they use today are much less likely to cause the type of damage that was common years ago. I still think he had the best line of all saying "I could choose to have radiation or not, and no one could fault me for my decision either way."

I decided that even if I recurred, I didn't want to have any regrets that I didn't do everything initially to prevent it. So I went ahead with the external radiation. The post-radiation scan didn't show any cancer signs, nor have any since, so I haven't done any additional treatment.

I also have to acknowledge the gynecological oncologist who removed 17 lymph nodes during surgery. Although mine were all negative for cancer, a lymphadenectomy is also shown to reduce recurrences. I did develop lymphedema in my legs a couple of years after treatment, which may be due to the lymph node removal and/or the radiation, but I consider this a small price to pay for being cancer-free until now.

SpringerSpanielMom

Thanks, cmb, for your thoughtful and detailed response.

Re carbo/taxol v. other treatments, I'm frustrated by two studies that draw almost exactly opposite opinions, even down to opposite numbers. I simply cannot reconcile them. One is from 2022, and one from 2020. The 2022 study says carbo taxol is just as good ("not inferior"), but the survival numbers are horrible. In contrast, the 2020 study says carbo taxol, just the taxol part actually, is much inferior, and the survival numbers are much better.

2020 study criticizing taxol: "Relapse-free survival was significantly worse in MMMT-E treated with platinum/taxanes (P = 0.024) compared to non-taxane regimen." "MMMT-O responded better to a combination of carboplatin with anthracyclines than with taxanes." "The promising survival data from various studies and the reduced toxicity found in the carboplatin and paclitaxel combination treatments which are predominantly used in endometrial and ovarian adenocarcinoma, led several institutions, including our own, to change the chemotherapy regimen in MMMT-E to this more tolerable combination. However, there is no established consensus for therapeutic management in this patient group." "We also analyzed whether the choice of the chemotherapy regimen affected the observed favorable relapse-free survival of MMMT-E patients, regardless of FIGO Stage. Indeed, a significantly shorter time to relapse for patients receiving platinum and taxanes than those receiving platinum and anthracyclines or ifosfamide was observed. This indicates that MMMT-E patients who received taxane-free platinum combination chemotherapy and particularly Stage FIGO I/II MMMT-E patients who do not relapse within the first 2.5 years have excellent long-term survival outcomes." "Our large retrospective case–control study with over 20 years of follow-up has clearly shown that the combination of carboplatin/taxanes is less efficient in MMMT-E." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7039840/ 

The 2022 one for recurrent carcinosarcoma Stages 1-4 says carbo taxol is "not inferior". "A combination regimen of paclitaxel and carboplatin resulted in a longer progression-free survival and non-inferior duration of overall survival in patients with uterine carcinosarcoma compared with those who were treated with paclitaxel and ifosfamide, according to findings from a phase 3 trial (NCT00954174) published in the Journal of Clinical Oncology. The median overall survival (OS) for those treated with paclitaxel and carboplatin was 37 months compared with 29 months for those treated with paclitaxel and ifosfamide ...The median progression-free survival (PFS) was 16 months in the PC group, compared with 12 months in the paclitaxel and ifosfamide group ." "In the primary uterine carcinosarcoma cohort, median overall survival was 37 months for those who received paclitaxel/carboplatin compared to 29 months for the paclitaxel/ifosfamide treatment arm. Median progression-free survival was 16 months for women who received paclitaxel/carboplatin and 12 months for women who received paclitaxel/ifosfamide. There was a similar trend in results noted for the women who participated in the smaller, secondary cohort of patients with ovarian carcinosarcoma, with 30 months median overall survival in the paclitaxel/carboplatin arm vs 25 months in the paclitaxel/ifosfamide arm and 15 months median progression-free survival for the paclitaxel/carboplatin arm and 10 months for the paclitaxel/ifosfamide." "The current evidence-based standard of care is treatment with combined paclitaxel and ifosfamide, however, this treatment comes with several limitations and it was imperative to find an effective treatment alternative for women with this diagnosis,” lead author Matthew A Powell, MD, professor of obstetrics and gynecology and chief of the Division of Gynecologic Oncology at Washington University School...St. Louis, said..."A total of 259 deaths occurred in the uterine carcinosarcoma group, and 61 in the ovarian carcinosarcoma group. Most deaths were attributed to disease, but 2 in the paclitaxel and carboplatin group were from treatment." In terms of patient-reported quality of life in the uterine carcinosarcoma group, patient-reported neurotoxicity symptoms were not significantly different between treatment arms. In both arms, a decreased quality of life and increase in neurotoxic symptoms were reported." https://ascopost.com/News/60146 https://www.cancernetwork.com/view/paclitaxel-plus-carboplatin-is-reportedly-non-interior-to-paclitaxel-and-ifosfamide-in-uterine-carcinosarcoma

Again, the cynical part of me feels there was great pressure to criticize ifosfamide and push carbo taxol forward because carbo taxol doesn't require hospitalization, and ifosfamide often does. So carbo taxol is cheaper...we've been down this sorry road before.

Re radiation and lymphadenectomy, my conclusions and experiences are similar to yours.

SpringerSpanielMom

https://csn.cancer.org/discussion/comment/1694967#Comment_1694967

OMG, it's so funny that you say that, because she DID start laughing!!! And kept laughing!!! I was crying, she was laughing--crazy time. She's like, "Hee hee hee, I guess I should have said that differently". Ya think??? My patience with this center grows thinner. More excitement today...

cmb

https://csn.cancer.org/discussion/comment/1695017#Comment_1695017

It is hard to consider the options when different studies point to different conclusions. But when I was diagnosed, I had read older studies available then that showed the survival statistics weren't all that great either when Ifosfamide was one of the primary chemos, even when paired with other chemos like Cisplatin.

Since I had four different chemos, I can't say which ones were the most effective for me. But the comment in the 2022 report that said "neurotoxicity symptoms were not significantly different between treatment arms" certainly wasn't true for me.

My phase two chemo was really hard to get through and after the first cycle, I seriously considered quitting. I did make it through with additional support from the oncologist and the oncology nurse, but I wouldn't underestimate the toll those chemos can take on the patient during treatment. I was forewarned by the doctor that it would be a tough regimen, but I had no idea what he meant until I started. And I know from my reading that I didn't even have the worst symptoms. I was just glad to be done with it.

We've read that for those women on the board who have taken, or are on immunotherapy, the side effects can vary greatly too, with some so severe they've caused the woman to discontinue that particular form of immunotherapy. So no treatment is easy and some can be more much worse for certain women.

SpringerSpanielMom

Thanks very much, CMB, so good to know. You did so much frontline...but I realize you presented at a higher stage. I look at Teresa Wingfield too, our MMMT pioneer in getting immunotherapy frontline w/ chemo & outside of a study, and while I can't recall her stage, she too was Lynch positive, unlike me, and (also different from me) she is MSI-H and has a high tumor mutational burden. On Facebook our moderator is presenting recurrence stats, and looking at over 700 women (a very respectable sample size), Stage 1s had a higher recurrence at around 13%, second only to Stage 4s! Stage 3s only had a 7% recurrence! My doctor husband wonders if that's because much more is often done frontline for Stage 3s. I'm just nervous doing only "by the book" therapy frontline, and "nothing" now. I am trying to exercise, eat better, and lose weight just in case; for general health; and because I've read that thinner patients get better care. My husband points out from his own experience it is easier to feel new or changing masses in thinner patients, but I've also read about doctor bias, sometimes unintended, toward bigger patients. I'm not that big, but certainly my BMI is nowhere near 25 or less...when I read your profile for the umpteenth time, I realize I was not prescribed Lovenox as many of you all were, and I did not need Neulasta.

Ribbons

I just have to comment here. I HAD clear cell and serous mixed with “regular” cancer. Stage 1A grade 3. Try finding information on clear cell! So I don’t read this stuff much, especially since I am now 3 years NED and that gives me more hope. I know there have been complaints about people saying one must stay positive, here is my take on that. I think when first diagnosed it is ok to research as much as is tolerable, I think a person should choose a Dr and facility to have trust in and be comfortable going there. Compare their treatment plan with the research and if it seems reasonable then go with it. Occupy your mind with other things and don’t dwell on thoughts of cancer! Believe that you will be ok, you either will be or won’t be but constant thinking about all the bad “what if’s” is not doing anybody any good. All that does is add stress and you can find studies that say stress can cause cancer! So stop! Maybe I bury my head in the sand sometimes, but that works for me. LOL And another note, everyone is an individual and those studies can’t recognize that very much. I have a good friend who had an aggressive breast cancer, had one round of chemo and was terribly allergic. She is on a hormone regimen now instead and is over 1 year NED so far.

SpringerSpanielMom

I noticed myself info on clear cell was pretty rare. It seems often lumped in w/ UPSC, which I have mixed in with endometriod for the carcinoma component of my GCS/MMMT. After 40 years of well-documented zero progress with my cancer (zero!) and a 6% decline in survival for uterine cancer overall (a decline! only cancer to decline since 1975!), all of a sudden the landscape is changing so quickly and positively, finally; even just a few months ago I believe Keytruda wasn't approved for uterine cancer at all. Now it is, and now it's being used frontline in studies. So I'm just trying to keep up, while finding out for myself the best guess (given the continuing lack of data) at my chance of recurrence, and/or which 1as recur and why. This info guides my treatment choices. My local onc cannot keep up nor should she be expected to with my rare cancer. So glad you're doing well.