@mema You are sure getting scanned from every angle. I’m 71 and far from a young white woman. My mind thinks I’m 30 years younger but my body sure does not! 😊
Welcome to Connect, @odette and @kenwood1. I'm delighted that you found each other so quickly. Being diagnosed with a rare cancer, like ovarian clear cell carcinoma, it can be a challenge to find others like you.
Odette, when were you diagnosed? Have you started treatment?
Kenwood, Do you have more chemo to go or was 6 rounds the completed treatment at this time? How are you feeling?
I finished my third round of chemo for my clear cell uterine cancer. The last session they gave me neulasta. I have been experiencing bone pain which they say is a side effect. This my 9th day after and I am finally having relief from the pain. My head still is terribly fuzzy. I am hoping this gets better with more time.
I finished my third round of chemo for my clear cell uterine cancer. The last session they gave me neulasta. I have been experiencing bone pain which they say is a side effect. This my 9th day after and I am finally having relief from the pain. My head still is terribly fuzzy. I am hoping this gets better with more time.
I have had one cycle of chemotherapy for the same type of cancer as yours. We must have been diagnosed close in time. My I ask how where the first and second cycle for you? Is it get a lot more difficult or were they all this hard. Just curious about how others have done on this regiment?
I hope you feel better so and for awhile.
@jbdoxey00. Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. Have you read through some of the other discussions? I hope you will find support and information here that will be helpful to you.
May I ask you to share a little of your story? When did you receive your diagnosis and what is your treatment plan?
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 finished my third round of chemo for my clear cell uterine cancer. The last session they gave me neulasta. I have been experiencing bone pain which they say is a side effect. This my 9th day after and I am finally having relief from the pain. My head still is terribly fuzzy. I am hoping this gets better with more time.
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!
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?
You should be eligible to take Enhertu. This is an antibody-drug conjugate that targets cancers that express HER2. It is approved for all solid tumors that are 3+ for HER2. I expect your oncologist will recommend this tomorrow.
People on this forum who have taken it have found it to work (at least for a while) and for it to be quite tolerable.
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?
@jchantler Welcome to Mayo Clinic Connect and to our Support Group. I see you have already received a recommendation from @val64. The results of your second CT scan must have been a shock for you and not the results you'd hoped for.
My cancer journey is and was different than yours as I did not have chemotherapy. In your place here is what I would do. You have some questions in your post that I would ask my oncologist. Directly. And write these questions down on a card or paper so you can refer to them during your appointment.
1. Since you have new tumors that have shown up in your lungs are these tumors a new cancer? Does this mean I have lung cancer or is the lung tumor also clear cell carcinoma?
2. the current treatment does not seem to be working for me. What's next? What other clinical trials am I eligible to enter?
3. My insurance won't pay for Trastumzab. If you think this would be a next step for me will you be willing to appeal the decision of my insurance?
In a medical environment it can be difficult to advocate for yourself. Do you have someone who goes to your appointments with you who can take notes and provide you with support? You will do the talking but your support (your spouse, relative, good friend) will jump in as needed. In addition, with your support in the appointment tomorrow you will two sets of ears - yours and your support person. I know that when I am very anxious during appointments I miss information and so my husband is present with me and takes notes.
Do you have other questions to ask your oncologist?
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!
@jchantler I live in a state (Michigan) where marijuana is legal. Marijuana dispensaries have popped up all over. I've found out that there are many of us "old folks" who go into these dispensaries to get gummies. When you think about it people have been using marijuana for years for pain due to cancer and cancer treatments. Why shouldn't we try gummies? It's great that you've found something that will both reduce pain and allow you to sleep.
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@mema You are sure getting scanned from every angle. I’m 71 and far from a young white woman. My mind thinks I’m 30 years younger but my body sure does not! 😊
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Hug
3 ReactionsI finished my third round of chemo for my clear cell uterine cancer. The last session they gave me neulasta. I have been experiencing bone pain which they say is a side effect. This my 9th day after and I am finally having relief from the pain. My head still is terribly fuzzy. I am hoping this gets better with more time.
-
Like -
Helpful -
Hug
1 ReactionI have had one cycle of chemotherapy for the same type of cancer as yours. We must have been diagnosed close in time. My I ask how where the first and second cycle for you? Is it get a lot more difficult or were they all this hard. Just curious about how others have done on this regiment?
I hope you feel better so and for awhile.
-
Like -
Helpful -
Hug
2 ReactionsClear cell ovarian cancer stage 2/3 here!
@jbdoxey00. Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. Have you read through some of the other discussions? I hope you will find support and information here that will be helpful to you.
May I ask you to share a little of your story? When did you receive your diagnosis and what is your treatment plan?
-
Like -
Helpful -
Hug
1 ReactionHello - 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?
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!
You should be eligible to take Enhertu. This is an antibody-drug conjugate that targets cancers that express HER2. It is approved for all solid tumors that are 3+ for HER2. I expect your oncologist will recommend this tomorrow.
People on this forum who have taken it have found it to work (at least for a while) and for it to be quite tolerable.
Good luck!
-
Like -
Helpful -
Hug
1 Reaction@jchantler Welcome to Mayo Clinic Connect and to our Support Group. I see you have already received a recommendation from @val64. The results of your second CT scan must have been a shock for you and not the results you'd hoped for.
My cancer journey is and was different than yours as I did not have chemotherapy. In your place here is what I would do. You have some questions in your post that I would ask my oncologist. Directly. And write these questions down on a card or paper so you can refer to them during your appointment.
1. Since you have new tumors that have shown up in your lungs are these tumors a new cancer? Does this mean I have lung cancer or is the lung tumor also clear cell carcinoma?
2. the current treatment does not seem to be working for me. What's next? What other clinical trials am I eligible to enter?
3. My insurance won't pay for Trastumzab. If you think this would be a next step for me will you be willing to appeal the decision of my insurance?
In a medical environment it can be difficult to advocate for yourself. Do you have someone who goes to your appointments with you who can take notes and provide you with support? You will do the talking but your support (your spouse, relative, good friend) will jump in as needed. In addition, with your support in the appointment tomorrow you will two sets of ears - yours and your support person. I know that when I am very anxious during appointments I miss information and so my husband is present with me and takes notes.
Do you have other questions to ask your oncologist?
@jchantler I live in a state (Michigan) where marijuana is legal. Marijuana dispensaries have popped up all over. I've found out that there are many of us "old folks" who go into these dispensaries to get gummies. When you think about it people have been using marijuana for years for pain due to cancer and cancer treatments. Why shouldn't we try gummies? It's great that you've found something that will both reduce pain and allow you to sleep.