@jchantler I've read all of your posts. You have deftly described what it's like to be where you are in your cancer treatment. @ffr followed with her description. I'm just giving you my impression here of what you've both written and how significant this is for those of reading your words.
I'm 73-years-old. I was first diagnosed at age 67 and when I first heard the word "cancer" I too was planning my death and where I'd be buried. Those thoughts still come to me as I realize that I am closer to the end of my life and my friends all around me have serious illnesses or have died.
What do you think of the suggestion that @ffr made of talking with a social worker who specializes in oncology? There may be a social worker or group associated with your cancer care center. Sometimes we all need someone who has been through what we are going through. Their words at least for me have more authenticity. I don't know about you but I didn't need a social worker to tell me what to do or how to cope. I already knew and practiced much of those skills. I just needed a skilled and empathic person who listened to me. I think listening is the greatest gift we can give one another.
Thank you so very much for sharing this. I hope the same lowering of neuropathy happens this time - had my chemo yesterday. I napped the whole time - 5 hours - so I'm still awake at 1 am. They lowered my Benedril dose, but it still knocks me out. They gave me a dosage for the B6 and the pills from Amazon matched that. I should go look it up but, hey, I just had chemo. Getting up off the couch is too hard. If anyone needs dose info, let me know. How about Lipoic Acid? Do you take that?
Interesting that it was different each time for you. I don't have enough info yet. Fatigue really bad both times. Also got cold sores and that wipes me out. Now I'm taking Acylcovir preventively. I thought i had B vitamins covered with my multivitamin. I was surprised to see what a low does they had. Not nearly enough for this
Did you do Taxol before?
I hate being bald. I'm 76 and had mid lenght silver hair that I put up loosely with a comb. I don't miss plucking out my moustache and chin hairs though.
Love this forum!
I'm 74. oddly i don't really get fatigued. and i did not try lipoic acid since everything seems to be working well enough to control neuropathy and get my counts high enough for my next blood test. Will look it up, however.
my 6(8) hour infusions were cisplatin, taxol and herceptin - how just herceptin (keytruda).
yeah, but hair is just hair - would rather be living and bald. just wait until you lose your nose hairs (drip, drip) and the stuff in the nether region (feels very weird).
the thing that was bothering me and keeping me from sleeping was the steroids that they put me on (5 the night before chemo, 1 in the a.m. and p.m. for 4 days after) - plus my face got really red even with the allegra they told me to take. I am sleeping a lot these days but never that bad plus i try to walk 1-2 miles/day.
oh, i guess i'm dmmr, not pmmr which may make a difference. actually i wanted to get Jemperli (which is for pMMR) but since they said this was working, it WOULD be off label.
maybe you really need a second opinion!! (I thought about finding a gravesite but too depressing! instead, i'm booking foreign travel until i can't do it anymore. my oncologist hates it but i'm scheduling everything around chemo treatments. I do notice that i don't have much bladder control for about 4-5 days after chemo. need to wear a diaper on flights > 4 hours (which means i need to get manually patted down at the airport but whatever).
@jchantler I've read all of your posts. You have deftly described what it's like to be where you are in your cancer treatment. @ffr followed with her description. I'm just giving you my impression here of what you've both written and how significant this is for those of reading your words.
I'm 73-years-old. I was first diagnosed at age 67 and when I first heard the word "cancer" I too was planning my death and where I'd be buried. Those thoughts still come to me as I realize that I am closer to the end of my life and my friends all around me have serious illnesses or have died.
What do you think of the suggestion that @ffr made of talking with a social worker who specializes in oncology? There may be a social worker or group associated with your cancer care center. Sometimes we all need someone who has been through what we are going through. Their words at least for me have more authenticity. I don't know about you but I didn't need a social worker to tell me what to do or how to cope. I already knew and practiced much of those skills. I just needed a skilled and empathic person who listened to me. I think listening is the greatest gift we can give one another.
i was put in touch after the pathology diagnosis with a Palliative Care doctor. i only talked with him twice (trying to figure out whether or not to do chemo because i was VERY freaked) but he's connected me with a social worker and some other people (i may have to move into assisted living or ??? since i have no family).
I'm 74. oddly i don't really get fatigued. and i did not try lipoic acid since everything seems to be working well enough to control neuropathy and get my counts high enough for my next blood test. Will look it up, however.
my 6(8) hour infusions were cisplatin, taxol and herceptin - how just herceptin (keytruda).
yeah, but hair is just hair - would rather be living and bald. just wait until you lose your nose hairs (drip, drip) and the stuff in the nether region (feels very weird).
the thing that was bothering me and keeping me from sleeping was the steroids that they put me on (5 the night before chemo, 1 in the a.m. and p.m. for 4 days after) - plus my face got really red even with the allegra they told me to take. I am sleeping a lot these days but never that bad plus i try to walk 1-2 miles/day.
oh, i guess i'm dmmr, not pmmr which may make a difference. actually i wanted to get Jemperli (which is for pMMR) but since they said this was working, it WOULD be off label.
maybe you really need a second opinion!! (I thought about finding a gravesite but too depressing! instead, i'm booking foreign travel until i can't do it anymore. my oncologist hates it but i'm scheduling everything around chemo treatments. I do notice that i don't have much bladder control for about 4-5 days after chemo. need to wear a diaper on flights > 4 hours (which means i need to get manually patted down at the airport but whatever).
Are you on Herceptin/trastuzumab or Keytruda/pembrolizumab (or both)? These are different antibodies against different things.
Herceptin is against HER2, and Keytruda is against the immune inhibitor PD-1. Jemperli/dostarlimab is a different company's antibody against PD-1, and would be expected to have about the same effects as Keytruda. Jemperli is approved for dMMR endometrial cancers.
EOB says trastuzumab. I guess i AM pMMr.
I'M SORRY - i was mis-informed (or mis-read the literature). I thought keytruda and herceptin (trast.) were the same. I know Jermperli is different as i tried to get switched over to that. oddly enough, TWO MEDICAL people told me that since this treatment was working, i should stick with it (6 infusions of taxol, platin, trast and trast forever). but they based this on a ct-scan which was done PRE-SURGERY and one that was after 5 infusions (no disease). i think this is faulty logic - how do they know the surgery was successful and the infusions did anything based on this evidence? ditto the ca-125 results-- going down but not for the last 4 infusions.
Thank you so very much for sharing this. I hope the same lowering of neuropathy happens this time - had my chemo yesterday. I napped the whole time - 5 hours - so I'm still awake at 1 am. They lowered my Benedril dose, but it still knocks me out. They gave me a dosage for the B6 and the pills from Amazon matched that. I should go look it up but, hey, I just had chemo. Getting up off the couch is too hard. If anyone needs dose info, let me know. How about Lipoic Acid? Do you take that?
Interesting that it was different each time for you. I don't have enough info yet. Fatigue really bad both times. Also got cold sores and that wipes me out. Now I'm taking Acylcovir preventively. I thought i had B vitamins covered with my multivitamin. I was surprised to see what a low does they had. Not nearly enough for this
Did you do Taxol before?
I hate being bald. I'm 76 and had mid lenght silver hair that I put up loosely with a comb. I don't miss plucking out my moustache and chin hairs though.
Love this forum!
Thanks for the chuckle re no need to pluck the random facial hairs!
When my hair came back, it was not quite as thick on my head, but those damned chin hairs were excited to return. Still, if that’s my trade off for survival I’m in.
I was dx with clear cell uterine cancer 111C in April 2025. In May, I had BSO and TAH. This month receiving 2nd out of 6 treatments of Carbo and Taxol and immunotherapy. 25 rounds of radiation therapy. I will be receiving immunotherapy for 3 years.
I never had any symptoms except for heavy bleeding one evening. I went to ER to find out my endometrial lining was 29mm and also received a CAT scan and biopsy.
If only women were able to have vaginal ultrasounds routinely to check the uterine lining.
I have a great support team and wonderful medical team.
I know this is a rare and aggressive cancer. Has anyone else have this diagnosis and how are you doing?
Thanks for the chuckle re no need to pluck the random facial hairs!
When my hair came back, it was not quite as thick on my head, but those damned chin hairs were excited to return. Still, if that’s my trade off for survival I’m in.
@jchantler I've read all of your posts. You have deftly described what it's like to be where you are in your cancer treatment. @ffr followed with her description. I'm just giving you my impression here of what you've both written and how significant this is for those of reading your words.
I'm 73-years-old. I was first diagnosed at age 67 and when I first heard the word "cancer" I too was planning my death and where I'd be buried. Those thoughts still come to me as I realize that I am closer to the end of my life and my friends all around me have serious illnesses or have died.
What do you think of the suggestion that @ffr made of talking with a social worker who specializes in oncology? There may be a social worker or group associated with your cancer care center. Sometimes we all need someone who has been through what we are going through. Their words at least for me have more authenticity. I don't know about you but I didn't need a social worker to tell me what to do or how to cope. I already knew and practiced much of those skills. I just needed a skilled and empathic person who listened to me. I think listening is the greatest gift we can give one another.
Thank you for this. My clinic referred me to a counselor who has helped a lot of end of life cancer patients and worked in hospice previously. She is available once a month for an hour or so. Somewhat helpful, but with only monthly meetings hard to get a flow going. My friends on the other hand are being GREAT!
Thank you for this information. I did not realize that there might be a counselor specifically for end of life concerns. I will keep this in mind if & when there’s a recurrence.
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@jchantler I've read all of your posts. You have deftly described what it's like to be where you are in your cancer treatment. @ffr followed with her description. I'm just giving you my impression here of what you've both written and how significant this is for those of reading your words.
I'm 73-years-old. I was first diagnosed at age 67 and when I first heard the word "cancer" I too was planning my death and where I'd be buried. Those thoughts still come to me as I realize that I am closer to the end of my life and my friends all around me have serious illnesses or have died.
What do you think of the suggestion that @ffr made of talking with a social worker who specializes in oncology? There may be a social worker or group associated with your cancer care center. Sometimes we all need someone who has been through what we are going through. Their words at least for me have more authenticity. I don't know about you but I didn't need a social worker to tell me what to do or how to cope. I already knew and practiced much of those skills. I just needed a skilled and empathic person who listened to me. I think listening is the greatest gift we can give one another.
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Helpful -
Hug
1 ReactionI'm 74. oddly i don't really get fatigued. and i did not try lipoic acid since everything seems to be working well enough to control neuropathy and get my counts high enough for my next blood test. Will look it up, however.
my 6(8) hour infusions were cisplatin, taxol and herceptin - how just herceptin (keytruda).
yeah, but hair is just hair - would rather be living and bald. just wait until you lose your nose hairs (drip, drip) and the stuff in the nether region (feels very weird).
i am gargling with 1 t salt and 1 t baking powder 3 times a day, had to switch to a VERY soft chemo toothbrush (https://www.amazon.com/dp/B00N3Z9WDU?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1 this one from amazon from Tess - took a while to come but didn't start getting bleeding teeth until pretty far along and it is sporadic so occasionally i use my old soft bristle). also i had a friend who told me to switch a large spoonful of coconut oil around my mouth in the morning. She said it tasted terrible - i like the taste of the the one i got from amazon ( la tourangelle - https://www.amazon.com/dp/B0CSPJMCH7?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1&th=1).
the thing that was bothering me and keeping me from sleeping was the steroids that they put me on (5 the night before chemo, 1 in the a.m. and p.m. for 4 days after) - plus my face got really red even with the allegra they told me to take. I am sleeping a lot these days but never that bad plus i try to walk 1-2 miles/day.
oh, i guess i'm dmmr, not pmmr which may make a difference. actually i wanted to get Jemperli (which is for pMMR) but since they said this was working, it WOULD be off label.
maybe you really need a second opinion!! (I thought about finding a gravesite but too depressing! instead, i'm booking foreign travel until i can't do it anymore. my oncologist hates it but i'm scheduling everything around chemo treatments. I do notice that i don't have much bladder control for about 4-5 days after chemo. need to wear a diaper on flights > 4 hours (which means i need to get manually patted down at the airport but whatever).
good luck!
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5 Reactionsi was put in touch after the pathology diagnosis with a Palliative Care doctor. i only talked with him twice (trying to figure out whether or not to do chemo because i was VERY freaked) but he's connected me with a social worker and some other people (i may have to move into assisted living or ??? since i have no family).
-
Like -
Helpful -
Hug
1 ReactionAre you on Herceptin/trastuzumab or Keytruda/pembrolizumab (or both)? These are different antibodies against different things.
Herceptin is against HER2, and Keytruda is against the immune inhibitor PD-1. Jemperli/dostarlimab is a different company's antibody against PD-1, and would be expected to have about the same effects as Keytruda. Jemperli is approved for dMMR endometrial cancers.
-
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Helpful -
Hug
1 ReactionEOB says trastuzumab. I guess i AM pMMr.
I'M SORRY - i was mis-informed (or mis-read the literature). I thought keytruda and herceptin (trast.) were the same. I know Jermperli is different as i tried to get switched over to that. oddly enough, TWO MEDICAL people told me that since this treatment was working, i should stick with it (6 infusions of taxol, platin, trast and trast forever). but they based this on a ct-scan which was done PRE-SURGERY and one that was after 5 infusions (no disease). i think this is faulty logic - how do they know the surgery was successful and the infusions did anything based on this evidence? ditto the ca-125 results-- going down but not for the last 4 infusions.
Thanks for the chuckle re no need to pluck the random facial hairs!
When my hair came back, it was not quite as thick on my head, but those damned chin hairs were excited to return. Still, if that’s my trade off for survival I’m in.
-
Like -
Helpful -
Hug
3 ReactionsI was dx with clear cell uterine cancer 111C in April 2025. In May, I had BSO and TAH. This month receiving 2nd out of 6 treatments of Carbo and Taxol and immunotherapy. 25 rounds of radiation therapy. I will be receiving immunotherapy for 3 years.
I never had any symptoms except for heavy bleeding one evening. I went to ER to find out my endometrial lining was 29mm and also received a CAT scan and biopsy.
If only women were able to have vaginal ultrasounds routinely to check the uterine lining.
I have a great support team and wonderful medical team.
I know this is a rare and aggressive cancer. Has anyone else have this diagnosis and how are you doing?
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Like -
Helpful -
Hug
1 ReactionSure hope I will be so lucky. Still saving a few hair barrettes in hopes!
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Hug
1 ReactionThank you for this. My clinic referred me to a counselor who has helped a lot of end of life cancer patients and worked in hospice previously. She is available once a month for an hour or so. Somewhat helpful, but with only monthly meetings hard to get a flow going. My friends on the other hand are being GREAT!
-
Like -
Helpful -
Hug
2 ReactionsThank you for this information. I did not realize that there might be a counselor specifically for end of life concerns. I will keep this in mind if & when there’s a recurrence.