Let's have a roll call!
Comments
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Kathy, I echo cmb’s sentiments. I have always been so impressed at how you tackle every setback and deal with some of the less than able medical staff you have had. I have never been found of the term warrior but it suits you well.
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Oops, I messed up above. Stage 1A, not grade. Grade 3, like all (?) MMMT carcinosarcomas. Sorry for the error. Also, I was 56 at diagnosis. (57 tomorrow--yay!) I had 9 lymph nodes removed. (One study says 10 or more is better...hmmm.) I see another poster is getting frontline immunotherapy with the standard carbo-taxol--yay!!! I'm done w/ my 6 carbo taxols & 5 brachytherapies. Post-chemo scan on Tuesday was clear; waiting on latest bespoke personalized Natera blood test (all clear so far, several times). CA 125 remains very low at 8, but we know that's not so helpful. Need to figure out what to do next. Somewhat related: breast cancer onc recommended an aromatase inhibitor for BC prevention, but I have a bit of osteoporosis, which the inhibitors will worsen, so I'm hesitant. My main risk factors are mild obesity for 25 years, only one child, never used birth control pills, and family history. I can't do tamoxifen because it causes uterine cancer. I did go on Metformin, a small dose, making sure to get the extended release version. Thoughts, anyone?
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I see I already posted lots of this info. Chemo brain...
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I had surgery, chemo and external radiation after my diagnosis for carcinosarcoma, but I have not done any further treatment. Since I have Lynch, I would hope that Keytruda or one of the other newer therapies would help if I recur, but I'm not taking anything else now.
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Hi,
I've been on an aromatase inhibitor for 5 years. I also have osteoporosis and osteopenia. Things have been stable - actually my hips improved. Dr has me take calcium and vitamin D3. Since I get monthly blood tests as part of my maintenance treatment, calcium is checked monthly and D is checked about twice a year. I do exercise and take olive leaf extract that may also be helping. There is a good website called Osteopenia3 by Kate Lindeman that has great information. I hope this is reassuring for you.
Corby
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Thanks!
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Hello all, I'm Ginnie
- Type: Endometrioid Adenocarcinoma, Stage 2, Grade 2, 65% myometrial invasion and cervical stromal involvement. 18 lymph nodes were clear.
- Treatment: January 2021 had total abdominal hysterectomy and bilateral salpingo-oophorectomy with sentinel and para aortic lymph node dissection. Followed by 30 rounds of radiation (27 EBR and 3 Brachy) ending in April 2021. (Cured right?!?)
- Current Status: October 2021 diagnosed with peritoneal carcinomatosis. Metastatic Endometrial Cancer. In two days I am heading in for my 6th (final) round of chemo Carbo/Taxol and am also concurrently participating in a clinical trial with immunotherapy (Dostarlimab). I choose to believe that I am receiving the drugs and not the placebo ;-) When I reach the "maintenance" phase, I'll continue to receive the Dostarlimab and add Niraparib. My most recent CT Scan is showing that the abdominal lesions are no longer visible and a small lesion on one of my lungs has shrunk dramatically.
- Other Comments: I was getting ready to have a routine follow-up appointment with my Radiation Oncologist and mentioned that I'd been experiencing weakness in my hips and upper legs. I always felt like I was walking uphill...weird sensation. So the Doc recommended that I have a CT scan prior to our appointment, just to check. Well, that was bad news. But just to confirm, I also had a PET scan prior to our appointment. Yup...bad news. And you know its bad when the first thing the Doc says is, "I'm so sorry". WHAT?!? No, I think there's been a misunderstanding, you're supposed to be making me feel better!! So back to the GO I went. I have been very fortunate with the TEAM. I love them all and I do have confidence in the decisions that have been made thus far. They are calm and patient and answer all of my questions. I know that not everyone has that experience and I am so sorry about that. It is awful enough to be going through this without also having to deal with rude or seemingly incompetent people.
I'm hoping that I'll be NED with my next CT scan. Even if that is the case, I know that I will no longer have the luxury of "knowing" that it won't be recur. I know that I'll always be waiting for the next round. But, in the meantime, I'm doing my best to remain positive about the time that I do have. Its not always easy, some days are definitely worse than others. But when those days rear their ugly heads, I give myself permission to "wallow" for a day or two and then dig myself back out of the pit and move on. There is just too much to enjoy to let it get me down for long.
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Hi Ginnie, it sounds like you are doing everything possible in a difficult situation. Since your lesions shrunk I would agree that you are not in the placebo group. And hopefully that will continue to shrink! I think your post shows us that recurrence is an unpredictable thing. I have read several articles that predict recurrence on genetic testing. That being said it seems that you did everything possible to prevent a recurrence. But now immunotherapy will address those mutations. I pray that they continue to shrink. Hugs
Sue
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Ginnie - I read your information here, as well as your profile. It sounds like you have your hands full, and I am most concerned about how stressful this must be for you. On your behalf, I feel incredibly annoyed at your doctors. No great reason. Just the standard shell game of making you wait, postponing things, all that.
We're here for you.
Hugs,
Deb
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Very helpful, CMB, thanks. I've been to sick to post much or be online. Chemo's last gasp?
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I love this post too. My least favorite is when they say, "If you stay positive, you'll beat it," or "the people I know who stayed positive did just fine". No. They say this without knowing the slightest thing about my cancer. Lots of very positive people are beaten by this beast, and c'mon, you can't always stay positive in these circumstances!
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Ginnie, your attitude is commendable. I am not as strong as you are. I like what you said (esp. the last line) and will try to follow your lead: "I'm hoping that I'll be NED with my next CT scan. Even if that is the case, I know that I will no longer have the luxury of "knowing" that it won't be recur. I know that I'll always be waiting for the next round. But, in the meantime, I'm doing my best to remain positive about the time that I do have. Its not always easy, some days are definitely worse than others. But when those days rear their ugly heads, I give myself permission to "wallow" for a day or two and then dig myself back out of the pit and move on. There is just too much to enjoy to let it get me down for long."
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TeamT and SpringerSpanielMom,
A lot of research right now is on immunotherapy and its success with patients that have certain genetic markers. It's very encouraging to know that treatments that didn't exist a few years ago are available for the treatment of recurrences.
But despite the understandable enthusiasm for immunotherapy, it's also important to remember that even some established chemotherapies can work better for certain patients than others.
I've written about my mother, who was diagnosed with cervical cancer over 40 years ago. Despite several surgeries and different chemo regimens, she kept having recurrences for about 7-8 years. But then her new oncologist wanted her to try a chemo that had just been approved. She was reluctant to do more chemo, but finally agreed and this treatment actually worked. When she died a number of years later from other health issues, she was still cancer free.
I'm sure today that genetic testing might point to why that particular chemo worked for her when others had failed. So, Ginnie, don't discount the fact that the chemo you're taking may also have had some impact on helping with your cancer recurrence.
And SpringerSpanielMom, I don't know if I'll ever completely stop thinking that my cancer might come back, but the longer my remission lasts, these thoughts become less frequent.
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You all will appreciate the scare I just received. My local oncology office called and said, "I'm sorry; we have bad news. It's about your Natera blood test." OMG, while I hope I never have a recurrence, that's my personalized blood test that (we hope) will show tiny traces of cancer from my tumor before CT scans, symptoms, etc. All my tests have come back clear so far; I was waiting on results from one from March 1. I started crying, and then she says, "we filled out the label wrong so Natera can't process it, so you need to come in for another blood draw". Seriously???? It is a constant adventure with this group.
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OMGoodness!! WTH?!? There is a part of me that wants to laugh about it, but you'd think the staff would be a little better trained regarding particular wording. I am so sorry that you went through that absolutely terrifying moment. Here's to good news after a properly filled out label is attached.
Ginnie
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It will get funnier; it's already a tiny bit funny. It would be funnier if events like this were not so common at this center.
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Hello, Ginnie,
No one wants to hear an Oncologist say. "I'm very sorry" after a scan! A peritoneal metastasis, scary. I have been reading about a few on this board lately. Relieved by your Great report on the lesions shrinking from the immunotherapy though. You are not in the placebo group!
The Carbo/Taxol chemotherapy is very effective in patients, too(wise cmb). I am NED so far after my initial treatment but reoccurence is on my mind a great deal. It sneaks into my mind each day and I must wilfully exorcise it. You have now faced reoccurence head on. I am hoping for the next scan NED right with you. Keep crawling out of that pit.
We are here.
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Springer Spaniel,
I am sure I would have dropped the phone and started crying, too. I am a ugly crier, Olympic Gold Medal winner! I have sat in medical building parking lots for hours crying over my pathology staging and my positive Covid test. Surely good news to follow!
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