Hello - I'm new here. Clear cell carcinoma of the uterous stage 4B with bad mutationg - P53, others and postive HER 2 score of 3+. Just had some very bad news with my second CT scan. I've had 3 rounds of chemo 3 weeks apart - 6 hour infusions with Carbo and Taxol. One tumor has shrunk by half but many new ones have shown up, including one in my lungs. Does this mean I now have lung cancer? I see my Oncologist on Tuesday. I don't think this treatment is working for me. Is there anything else? I just missed being included in a study on HER2 and using Trastumzab for uterine cancer. Insurance won't let me have it as it is only officially for breast cancer. Preliminary studies are very postive. Suggestions?
I also have clear cell carcinoma of the endometrium and had your same chemo juice. A CT scan before my last infusion showed metastasis to lymph nodes so my CCC is considered chemo resistant. Thus, I expect that it was the surgeries and radiation that enable me to sit here and reply.
I don’t have HER, P53 or other markers that direct me towards any treatment proven to help. Technically, my metastasis puts me into Stage 4, but my doctor won’t say it. So I understand where you are at.
I always have a list of questions when I see my oncologist and when first diagnosed my husband even recorded our conversations. Doctors don’t like that, but it really helped, as such discussions move quickly and we can misunderstand or forget.
I hope that you get the information you need and some answers that relay hope. The emotional journey can be more challenging than the medical one.
Hello - I'm new here. Clear cell carcinoma of the uterous stage 4B with bad mutationg - P53, others and postive HER 2 score of 3+. Just had some very bad news with my second CT scan. I've had 3 rounds of chemo 3 weeks apart - 6 hour infusions with Carbo and Taxol. One tumor has shrunk by half but many new ones have shown up, including one in my lungs. Does this mean I now have lung cancer? I see my Oncologist on Tuesday. I don't think this treatment is working for me. Is there anything else? I just missed being included in a study on HER2 and using Trastumzab for uterine cancer. Insurance won't let me have it as it is only officially for breast cancer. Preliminary studies are very postive. Suggestions?
i'm on medicare for 4b serous endometrial. i was on trastumzab with the first infusion and medicare covered it with no problem. are you sure about your insurance or did you just talk to some idiot? i just finished 6 (carbo, platin, trastumzab (actually i'm getting Keytruda but same thing). when i get the EOB's from insurance, the herceptin is about $10K (medicare gives them about $1K i think).
from the keytruda website:
a kind of uterine cancer called advanced endometrial carcinoma in adults:
when a laboratory test shows that your tumor is mismatch repair proficient (pMMR) or not microsatellite instability-high (MSI-H), and
you have received anti-cancer treatment, and it is no longer working, and
your cancer cannot be cured by surgery or radiation.
sounds like it should be approved. maybe you need a second opinion (they take a LONG time to get, however, at least in the SF bay area). I'm pMMR (there is something called Jemperli for dMMR).
My oncologist told me to take Vitamins B6 and B12 plus alpha Lipoic acid and L Glutamate. I suffered much less after my 3rd chemo with this regimen. After chemo 2 I a was in a lot of pain Also after chemo 2 I took Marijuand gummies to sleep and they really helped. A combo of Ibuprofen and Tylenol wasn't evern touching the pain and I couldn't sleep. I felt a little silly going into Maggie's Pot Shop, but the clerk was very knowledge about using the gummies with cancer treatment. Good luck to you!
i had some residual neuropathy from back fusion surgery 12/23 before the cancer infusions (2/25/25). i switched from B-100's which i've been taking forever to Life Extensions B12/Folate from amazon because i heard too much B6 isn't good (i also take multi's but switched from the female old person to just the normal ones). also taking L Glutamate. the neuropathy actually IMPROVED with this switch!!! (also my feet still feel a bit numb from the back surgery but it isn't bothering my walking or standing - just weird). good luck. The chemo really never bothered me much although WBC's and neutrophils have plummeted. not just doing Herceptin every 3 weeks. hoping it isn't as toxic (oh yeah, i DID lost all my body hair but, hey, it's just hair!)
the weird thing is that i never got the same side effects twice. after second infusion i had horrid knee pain (only at night and for about 4-5 nights) and nightly headaches but never again (and i've had 6 infusions). so, i could never really plan ( by taking aleve ahead of time, etc).
i had some residual neuropathy from back fusion surgery 12/23 before the cancer infusions (2/25/25). i switched from B-100's which i've been taking forever to Life Extensions B12/Folate from amazon because i heard too much B6 isn't good (i also take multi's but switched from the female old person to just the normal ones). also taking L Glutamate. the neuropathy actually IMPROVED with this switch!!! (also my feet still feel a bit numb from the back surgery but it isn't bothering my walking or standing - just weird). good luck. The chemo really never bothered me much although WBC's and neutrophils have plummeted. not just doing Herceptin every 3 weeks. hoping it isn't as toxic (oh yeah, i DID lost all my body hair but, hey, it's just hair!)
the weird thing is that i never got the same side effects twice. after second infusion i had horrid knee pain (only at night and for about 4-5 nights) and nightly headaches but never again (and i've had 6 infusions). so, i could never really plan ( by taking aleve ahead of time, etc).
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 also have clear cell carcinoma of the endometrium and had your same chemo juice. A CT scan before my last infusion showed metastasis to lymph nodes so my CCC is considered chemo resistant. Thus, I expect that it was the surgeries and radiation that enable me to sit here and reply.
I don’t have HER, P53 or other markers that direct me towards any treatment proven to help. Technically, my metastasis puts me into Stage 4, but my doctor won’t say it. So I understand where you are at.
I always have a list of questions when I see my oncologist and when first diagnosed my husband even recorded our conversations. Doctors don’t like that, but it really helped, as such discussions move quickly and we can misunderstand or forget.
I hope that you get the information you need and some answers that relay hope. The emotional journey can be more challenging than the medical one.
Thank you so much. Yeah, emotions, I was pretty freaked out about my scan. I'm a bit reassured by my oncologist. Before I was thinking I'd better buy a grave plot - or can I be buried on my 17 acres? I'd like a natural burial. I want to come back as a tree. Still something I need to check into, but not feeling quite as urgent. I'm 76 years old, so in any case I won't last forever.
Recording is agreat idea. I got as far as taking a photo of the directions a friend kindly wrote out for me with diagram. I forgot to do it at the appointment - but will hopefully remember next time.
i'm on medicare for 4b serous endometrial. i was on trastumzab with the first infusion and medicare covered it with no problem. are you sure about your insurance or did you just talk to some idiot? i just finished 6 (carbo, platin, trastumzab (actually i'm getting Keytruda but same thing). when i get the EOB's from insurance, the herceptin is about $10K (medicare gives them about $1K i think).
from the keytruda website:
a kind of uterine cancer called advanced endometrial carcinoma in adults:
when a laboratory test shows that your tumor is mismatch repair proficient (pMMR) or not microsatellite instability-high (MSI-H), and
you have received anti-cancer treatment, and it is no longer working, and
your cancer cannot be cured by surgery or radiation.
sounds like it should be approved. maybe you need a second opinion (they take a LONG time to get, however, at least in the SF bay area). I'm pMMR (there is something called Jemperli for dMMR).
Hello - Thank you for the info . I am currently getting Keytruda along with Carbo and Taxol. I got the Keytruda for my very first chemo, I am pMMR and they can't do surgery on me until some of the metastis clears up, if ever. So maybe that is why I was allowed to have it before exhausting other options, or maybe age. I'm 76 . With current treatment one tumor shrank but I have new ones, and in my lungs. Give it time, says my oncologist.
I want the Trastumzab because it is effective agains HER2. I have a score of 3+ which is the maximum. They proscribe it for breast cancer. It is in trials now for uterine cancer and looking effective it is particulary helpful for late stage. Not a cure, but a life extender, I can't get the Trastumzab until I exhaust other options. My oncologist tried, but it is an off label use now
i'm on medicare for 4b serous endometrial. i was on trastumzab with the first infusion and medicare covered it with no problem. are you sure about your insurance or did you just talk to some idiot? i just finished 6 (carbo, platin, trastumzab (actually i'm getting Keytruda but same thing). when i get the EOB's from insurance, the herceptin is about $10K (medicare gives them about $1K i think).
from the keytruda website:
a kind of uterine cancer called advanced endometrial carcinoma in adults:
when a laboratory test shows that your tumor is mismatch repair proficient (pMMR) or not microsatellite instability-high (MSI-H), and
you have received anti-cancer treatment, and it is no longer working, and
your cancer cannot be cured by surgery or radiation.
sounds like it should be approved. maybe you need a second opinion (they take a LONG time to get, however, at least in the SF bay area). I'm pMMR (there is something called Jemperli for dMMR).
I also have clear cell carcinoma of the endometrium and had your same chemo juice. A CT scan before my last infusion showed metastasis to lymph nodes so my CCC is considered chemo resistant. Thus, I expect that it was the surgeries and radiation that enable me to sit here and reply.
I don’t have HER, P53 or other markers that direct me towards any treatment proven to help. Technically, my metastasis puts me into Stage 4, but my doctor won’t say it. So I understand where you are at.
I always have a list of questions when I see my oncologist and when first diagnosed my husband even recorded our conversations. Doctors don’t like that, but it really helped, as such discussions move quickly and we can misunderstand or forget.
I hope that you get the information you need and some answers that relay hope. The emotional journey can be more challenging than the medical one.
Oncologist doesn't want to do surgery until/unless metastasis is cleared up. How was that for you? Did you have your surgery before metastasis to lymph nodes? So glad surgery and radiation worked for you! Write again and tell me more if you wish. I'd like to hear about your emotional journey. I cry easily, I moved to to tears by the kindness of friends. I am irritable. I don't normally swear much, but F bombs have been falling out of my mouth. Hard to plan anything - how long will I be around? How will I feel? What will it be like to die of this? I have nasty mutations that mean a cure is out of reach. One can always hope though. Maybe something new will be discovered.
Oncologist doesn't want to do surgery until/unless metastasis is cleared up. How was that for you? Did you have your surgery before metastasis to lymph nodes? So glad surgery and radiation worked for you! Write again and tell me more if you wish. I'd like to hear about your emotional journey. I cry easily, I moved to to tears by the kindness of friends. I am irritable. I don't normally swear much, but F bombs have been falling out of my mouth. Hard to plan anything - how long will I be around? How will I feel? What will it be like to die of this? I have nasty mutations that mean a cure is out of reach. One can always hope though. Maybe something new will be discovered.
Diagnosis was a shock, especially after the pathology came in and my second & third opinions were equally grim. Robotic surgery was easier than expected with no complications. I was in a Keytruda trial that I got (or didn’t?) with my chemo until the lymph node metastasis got me kicked out. Then two separate LN surgeries by two different doctors. An infection followed and I had a drain when I started radiation. Honestly, the drain bothered me more than the treatment. The experience of it all made me feel like I was living in a bad movie, not in the here & now. I couldn’t talk about my cancer without crying and told my friends to stop asking. When going out I put on my “mask” as I had put on my wig, feeling like an actress playing a part. Sleep was difficult, with my mind racing into horrible scenarios. Meditation, yoga, and support groups are not for me and I was unmotivated to exercise, though I now force myself to spend an hour a week at the gym.
Based on my experience, my suggestion to you is to
call a support group social worker. Or two. That was the first time I felt able to fully purge and feel understood. A 1:1 cancer mentor and, more recently, a therapist, have also been helpful. I try to do what makes me happy, not what others expect of me. “Until
you’ve walked in my shoes….”
Oh, and I also drop the F bomb a lot! There was a recent study that showed its benefits, so no guilt! 😉
Is there somewhere you can get a second opinion? My oncologist was perfectly willing to keep me on a drug that obviously wasn't working because the standard of care algorithm said to.
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I also have clear cell carcinoma of the endometrium and had your same chemo juice. A CT scan before my last infusion showed metastasis to lymph nodes so my CCC is considered chemo resistant. Thus, I expect that it was the surgeries and radiation that enable me to sit here and reply.
I don’t have HER, P53 or other markers that direct me towards any treatment proven to help. Technically, my metastasis puts me into Stage 4, but my doctor won’t say it. So I understand where you are at.
I always have a list of questions when I see my oncologist and when first diagnosed my husband even recorded our conversations. Doctors don’t like that, but it really helped, as such discussions move quickly and we can misunderstand or forget.
I hope that you get the information you need and some answers that relay hope. The emotional journey can be more challenging than the medical one.
-
Like -
Helpful -
Hug
2 Reactionsi'm on medicare for 4b serous endometrial. i was on trastumzab with the first infusion and medicare covered it with no problem. are you sure about your insurance or did you just talk to some idiot? i just finished 6 (carbo, platin, trastumzab (actually i'm getting Keytruda but same thing). when i get the EOB's from insurance, the herceptin is about $10K (medicare gives them about $1K i think).
from the keytruda website:
a kind of uterine cancer called advanced endometrial carcinoma in adults:
when a laboratory test shows that your tumor is mismatch repair proficient (pMMR) or not microsatellite instability-high (MSI-H), and
you have received anti-cancer treatment, and it is no longer working, and
your cancer cannot be cured by surgery or radiation.
sounds like it should be approved. maybe you need a second opinion (they take a LONG time to get, however, at least in the SF bay area). I'm pMMR (there is something called Jemperli for dMMR).
-
Like -
Helpful -
Hug
1 Reactioni had some residual neuropathy from back fusion surgery 12/23 before the cancer infusions (2/25/25). i switched from B-100's which i've been taking forever to Life Extensions B12/Folate from amazon because i heard too much B6 isn't good (i also take multi's but switched from the female old person to just the normal ones). also taking L Glutamate. the neuropathy actually IMPROVED with this switch!!! (also my feet still feel a bit numb from the back surgery but it isn't bothering my walking or standing - just weird). good luck. The chemo really never bothered me much although WBC's and neutrophils have plummeted. not just doing Herceptin every 3 weeks. hoping it isn't as toxic (oh yeah, i DID lost all my body hair but, hey, it's just hair!)
the weird thing is that i never got the same side effects twice. after second infusion i had horrid knee pain (only at night and for about 4-5 nights) and nightly headaches but never again (and i've had 6 infusions). so, i could never really plan ( by taking aleve ahead of time, etc).
-
Like -
Helpful -
Hug
1 ReactionThank 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!
-
Like -
Helpful -
Hug
1 ReactionThank you so much. Yeah, emotions, I was pretty freaked out about my scan. I'm a bit reassured by my oncologist. Before I was thinking I'd better buy a grave plot - or can I be buried on my 17 acres? I'd like a natural burial. I want to come back as a tree. Still something I need to check into, but not feeling quite as urgent. I'm 76 years old, so in any case I won't last forever.
Recording is agreat idea. I got as far as taking a photo of the directions a friend kindly wrote out for me with diagram. I forgot to do it at the appointment - but will hopefully remember next time.
-
Like -
Helpful -
Hug
1 ReactionHello - Thank you for the info . I am currently getting Keytruda along with Carbo and Taxol. I got the Keytruda for my very first chemo, I am pMMR and they can't do surgery on me until some of the metastis clears up, if ever. So maybe that is why I was allowed to have it before exhausting other options, or maybe age. I'm 76 . With current treatment one tumor shrank but I have new ones, and in my lungs. Give it time, says my oncologist.
I want the Trastumzab because it is effective agains HER2. I have a score of 3+ which is the maximum. They proscribe it for breast cancer. It is in trials now for uterine cancer and looking effective it is particulary helpful for late stage. Not a cure, but a life extender, I can't get the Trastumzab until I exhaust other options. My oncologist tried, but it is an off label use now
-
Like -
Helpful -
Hug
1 ReactionTell me about herceptin.
Oncologist doesn't want to do surgery until/unless metastasis is cleared up. How was that for you? Did you have your surgery before metastasis to lymph nodes? So glad surgery and radiation worked for you! Write again and tell me more if you wish. I'd like to hear about your emotional journey. I cry easily, I moved to to tears by the kindness of friends. I am irritable. I don't normally swear much, but F bombs have been falling out of my mouth. Hard to plan anything - how long will I be around? How will I feel? What will it be like to die of this? I have nasty mutations that mean a cure is out of reach. One can always hope though. Maybe something new will be discovered.
Diagnosis was a shock, especially after the pathology came in and my second & third opinions were equally grim. Robotic surgery was easier than expected with no complications. I was in a Keytruda trial that I got (or didn’t?) with my chemo until the lymph node metastasis got me kicked out. Then two separate LN surgeries by two different doctors. An infection followed and I had a drain when I started radiation. Honestly, the drain bothered me more than the treatment. The experience of it all made me feel like I was living in a bad movie, not in the here & now. I couldn’t talk about my cancer without crying and told my friends to stop asking. When going out I put on my “mask” as I had put on my wig, feeling like an actress playing a part. Sleep was difficult, with my mind racing into horrible scenarios. Meditation, yoga, and support groups are not for me and I was unmotivated to exercise, though I now force myself to spend an hour a week at the gym.
Based on my experience, my suggestion to you is to
call a support group social worker. Or two. That was the first time I felt able to fully purge and feel understood. A 1:1 cancer mentor and, more recently, a therapist, have also been helpful. I try to do what makes me happy, not what others expect of me. “Until
you’ve walked in my shoes….”
Oh, and I also drop the F bomb a lot! There was a recent study that showed its benefits, so no guilt! 😉
Herceptin is the brand name for trastuzumab.
Is there somewhere you can get a second opinion? My oncologist was perfectly willing to keep me on a drug that obviously wasn't working because the standard of care algorithm said to.