Endometrial SEROUS carcinoma
Comments
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There is so much research being done in uterine and ovarian cancer that I would encourage you to change your cancer team if you don't have complete confidence in them, rather than experiment with drugs like ivermectin. I hear all kinds of stories about cancer cures, and there is no way to evaluate what you hear. Instead, your gyn/onc should know about the best drugs to treat your cancer — drugs matched to the genetics of your specific cancer — and he or she should be able to explain what they are recommending to you and why and also be able to tell you what the next thing to try should be if the current therapy doesn't work. There are so many possibilities that didn't exist even a couple of years ago or were not approved for uterine cancer, but which drugs are right for an individual depends on the genetics, which is another reason throwing a random drug at your cancer is not likely to work and may very well do serious damage. Ivermectin, for example, like every other serious drug, can have very serious side effects. In the era of hope and possibility for uterine and ovarian cancer, it would be tragic to ignore research and treatment science in favor of anecdotes.
As a side note, my wonderful gyn/onc had included keytuda/lenvima as a possible treatment option for me, some time ago, but recommended against it for me because of the difficulty in tolerating lenvima. (Some people can benefit from keytruda alone, but because of the genetics of my cancer I am not one of them.) My doctor is now including the combination as a possible option for me in the future because his patients are not having the same trouble tolerating the lenvima as in the past. He said they learned how to introduce it gradually at first (rather than start with a higher dosage and reduce it in response to side effects). He now has many patients doing really well on it. I don't know what I'll decide when the time comes, but he has always been utterly honest and straight forward with me and respectful of my quality of life concerns when it comes to treatnent.
Good luck to us all….
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I have had 6 carplantin, taxol treatments and target bracytherapy and was told cancer free. Ca125 was at 7. I had recurrence after 1 year. My doctor started doxiplatin in. Red devil chemo and my ca125 is still high at 200 after 4 rounds. I am very tired and having swallowing issues and poor appetite, weight loss. I have appt next week to have round 5 and also see the dr.
He mentioned immunotherapy if this chemo wasn't effective. I feel like he isn't doing anything new but more standard. Anyone else had this type of treatment after severe recurrence. My ca2515 is very high and keeps rising.
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that is awesome you have such confidence in your care team. I have a great deal of confidence in mine too. They seem to be really on top of things. I think it helps that they are part of a large multi specialist, comprehensive cancer care organization. All testing except for PET scans in house, blood test results on the spot in-house . Pharmacy in house with absolutely the cheapest offering of drugs I have encountered. They have lots of colleagues to bring in for different types of care. I was impressed when they flaggedconcerns that need to be addressed by another specialist outside of their organization treating me for a rare condition completely unrelated to cancer. After evaluation by that outside specialist, it ended up not being an issue given my particular presentation, but I appreciated that they snagged the issue so it could be evaluated. They referred me to a pelvic therapist for pain and post post menopausal conditions, who is in another organization, but just right across the hall. They have a nutritionist who I saw initially for advice and I have come back to once to ask additional questions of what else can I do to help my body heal and fight this thing. She focuses on things with evidence, cautions on things with evidence to be damaging, it’s a bit frustrating that she hesitates with things that by my judgment seem to have potential for help yet are not proven, but I do expect my medical team to be evidence based, so I respect that . This is why I feel so confident and well cared for. Even so, I feel like as the patient I am still forced to try to keep on top of the literature, which, of course I do not have time to do but I still try, so that I can ask good questions and understand why they are making the decisions they are. Regularly something new, some term or some mechanism comes up that puzzles me, and then I have to research it. It never ends. I also feel that it’s time to check with Specialist at a major national center just for a second opinion on my options and recommendations . I don’t expect to get a different recommendation, but I’m hoping it is good for my peace of mind that we are doing everything we can.
I would like to contrast all of this positivity with the great disappointment and anger I feel against my regular preventive care gynecologist, who I now understand, failed on multiple occasions to provide preventive care, education, screening, and testing in my best interest, Proper patient based clinical judgments, not lazy adherence to some population level guideline on care. There are three key stages of my care at which I now realize her failures would collectively absolutely resulted in earlier stage of cancer at diagnosis. I’m still debating with myself my capacity for and obligations to act on those failures. In fact, I would really love perspective from others who may have had this experience, of what type of action you took or would like to take…0 -
yet another awesome testimonial about our care teams. I’m so impressed and absolutely agree with your recommendation about exploring another care team or a second opinion, maybe. I feel like my failure to do that or to ask questions and know that I was getting good answers when my preventive care gynecologist failed me, contributed to my late cancer diagnosis. I keep telling myself not to blame myself, it’s really not my fault.
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My understanding of the "red devil" drug (doxorubicon) is that there is a newer version of it (doxil) that is formulated in a different way so that it is nowhere near as harsh as the original. Something about a liposomal format. It is definitely used in gynecological cancers because it was one of the drugs my doctor and I were considering.
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Pippicat.
You are absolutely not to blame for your cancer or when it was diagnosed! I think sometimes we'd rather blame ourselves because it makes the world seem more orderly and under control if everything can be traced to something we did or didn't do. Cancer sucks and UPSC especially sucks. But bad things happen. Or at least that is my take on it. I was diagnosed early and was stage 1, did the whole shebang of chemo and internal radiation, and still recurred.
I'm glad you have a great team. It makes all the difference, doesn't it? I made the decision not to do any research and to leave that to my gyn/onc and his team. I decided that at diagnosis when I looked up UPSC and the first thing I saw in the literature is that it is a rare, aggressive cancer with a very poor prognosis. I don't even read my CT scans. Instead, I ask my doctor to tell me anything specific I need to know from the scan when we are discussing treatment options. I had the tumor genetics done when I recurred and then again last fall, since cancer can mutate and so much of treatment now depends on matching drugs to the cancer genetics. I was going to say "new drugs," but my understanding is that some of the drugs are not even new but are being newly used with specific cancers based on test results. The new Jemperli drug that lots of folks are excited about is not a match for me, but there is a new that is recently approved that is a match (Enhertu) although it is actually chemotherapy, so I am not likely to decide on that one.
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thank you so much for the reassurance and also the new information, I learned so so much with everyone who comments or replies. It is really interesting to hear of someone with a completely opposite approach to mine, that is not researching rather than researching things to death. it’s certainly a valid choice and might even mean you’ve got less anxiety than I do.
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It isn't like me not to delve into the literature on health related things. I have a public health background and automatically researched things that affected me or people I care about. And if I were not at a top comprehensive cancer care center with a brilliant gyn/onc, I would do that with this cancer. I would be compelled to try to stay on top of it all, to the extent possible for someone who isn't a oncology researcher or clinician. Thankfully, I can leave that to my dr. and care team, which frees me to live my life without it being ruled entirely by cancer. With UPSC, it is almost impossible to read anything in the research/treatment literature that doesn't leave one feeling that death is just a few months away. My approach isn't right for everyone, and if someone doesn't have a great care team, it would be dangerous to leave it up to them. I am so fortunate in my gyn/onc and his team.
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Hello hopeisreal12_, somehow I found your post in all these pages of comments. Red devil is a common chemo used in breast cancer and not something I have seen a lot of use in gyn cancers, but maybe one of the other ladies can tell me differently. The side effect you are describing are what I have heard some friends who had breast cancer experience - it is very hard.
If you are not feeling your doctor is working hard enough for you, and unfortunately we must be our own advocate, ask if there is another gyn onc availabale. I don't know where you are located or if there is a research hospital around. There is genetic testing to determine if you are dMMR, POLE, p53, etc that are responding to immunotherapy and now part of Standard of Care so insurance can cover it.
Hugs dear! I am sorry I had missed your post.
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Doxorubicon is frequently used in endometrial cancer. I think it is typically used for advanced or recurrent endometrial cancer. My gyn/onc did not consider it for me when I recurred because I have been clear about the kinds of side effects I was willing to tolerate. Since then, a new formulation called Doxil — liposomal doxorubicon — has been developed that is much easier to tolerate and also, as I understand it, better able to reach cancer cells.
MJ
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SEE! I knew one of the lovely ladies would be along. I appreciate the info!
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Thanks for your response. My oncologist stopped my doxi treatment this week and based on the pet scan might start me on keytuda/ linvima.
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Started Invima/keytruda combo of immunotherapy this week. So far no major side effects. Anyone else with advice on this therapy?
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Pippicat,
I’ve been reading through all the comments. I haven’t posted in a while. I saw that t you asked for a timeline of my journey.
-Late August 2023, diagnosed w/ IIIC1 HG Uterine Serous Carcinoma 100% myometrial penetration I am pMMR, tested for 70 variations no positive genetics. --September 26, 2023 GYN/Onc robotic laparoscopic complete hysterectomy, oophorectomy, omentectomy, peritoneal wash. —Oct ‘23 - Feb 14, 2024, 6 rounds carbo- taxol-dostarlimab followed by dostarlimab only, in 6 week intervals for as long as it works, minimum 2 years.
—March Surveillance CT after chemo NED🥳 —Mid- March ‘24 - April 19, 25 rounds external pelvic radiation —June 14 ‘24 CT SIghtly enlarged retroperitoneal lymph nodes in abdomen. Asked about PET-CT, Signatera. Was told Signatera not approved by Medicare for endometrial cancer, and since radiologist and pathologist concurred could be reactive and so borderline, too small for PET to be accurate or for biopsy, had to wait 2 months 😭
—Aug 12 CT, node grew from 1.1 to 2.4cm. —Sept. 4 Biopsy came back positive for Serous.😭😭 —Dr says current protocol is Keytruda infusions 3 or 6 week intervals tailored by my onco, with daily Lenvima. However, she conferred w/ radiology oncologist. They believe this is not a “true recurrence”, that cancer cells were too tiny to show up on original tests; but endometrial cancer diagnoses don’t restage so it gets called recurrence even tho’ only 6 or 7 months from original chemo start and about 8 weeks after NED scan.
—They have ordered a PET—CT (Oct 2 is first available!) If metastasis is contained in one or several clustered nodes, targeted radiology would be a clear option instead of K/L for now. Then I would continue on dostarlimab(jemperli) and surveillance, with systemic treatment of K/L if there is recurrence. —There may be a Phase 2 trial of ADC therapy starting in my area that I might qualify for, as well.So for me, right now it’s a waiting game. The fact it has doubled in 2 months, and by next test will be an additional 6 weeks, is maddening! At least we’ll find out if it’s stable or has spread and there will be a plan.
As sad as I am for those experiencing this cancer, I appreciate so much everyone’s sharing their personal experiences, especially with Keytruda, Lenvima, alternative therapies and signatera.My doctors prescribed taking 300 mg Benfotiamine, 600-1200mg alpha Lipoic acid, 200 mg B6, and B12 (check dosage w/ doctor as too much B12 can cause PN! )
My formerly horrible peripheral neuropathy has simmered down. IA local csc website through my hospital has had a yoga instructor leading Zoom pn exercise classes that have been particularly helpful for feet.Classes are once a week. Here is a sample class. I
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