Immunotherapy

RLynne
RLynne Member Posts: 7 Member
edited November 2022 in Gynecological Cancers (other than ovarian and uterine) #1


I have vaginal cancer - serous adenocarcinoma. I've been through carboplatin and taxol, and external & internal radiation.  I'm supposed to start immunotherapy this next week. Keytruda and Lenvima. Was curious as to anyone's experience with these drugs. How were your side effects? How long before side effects appeared.  Appreciate any info you are willing to share. Thanks much. 



 

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  • cmb
    cmb Member Posts: 1,001 Member
    edited September 2021 #2
    Check the Uterine Board

    This board has been pretty quiet lately, so I suggest that you post your question on the Uterine Board at https://csn.cancer.org/forum/189 which is quite active.

    While your cancer originated outside the uterus, most of the women on the Uterine Board had the same chemo and radiation treatment as you did. A few have also taken Keytruda and Lenvima. 

  • RLynne
    RLynne Member Posts: 7 Member
    edited September 2021 #3
    cmb said:

    Check the Uterine Board

    This board has been pretty quiet lately, so I suggest that you post your question on the Uterine Board at https://csn.cancer.org/forum/189 which is quite active.

    While your cancer originated outside the uterus, most of the women on the Uterine Board had the same chemo and radiation treatment as you did. A few have also taken Keytruda and Lenvima. 

    Thank you
     

    Thank you

     

  • llong0505
    llong0505 Member Posts: 4 *
    #4

    Hi, I also have vaginal cancer and have had the same treatments as you. I've been in Keytruda treatment since late fall 2021. Only side effect has been tiredness. I hope all goes well for you.

  • HFTG61
    HFTG61 Member Posts: 31 Member
    #5

    I have not been on this forum for several months. I was trying to deal with the side affects to my Taxol and Carboplatin. Mostly the numbness & rock hard feeling in my feet and toes, also my fingertips preventing me from doing my job well. One month before my last cycle of chemo ended, my tumor started up again. Now my doctors are realizing I have an more aggressive endometrial cancer than first thought. They want me to consider a clinical trial. Has anyone out there been thru or participated in a clinical trial study??

    I have decent medical coverage but I am not sure why they keep advising me that I may have to speak with a financial counselor. At first I only thought the major side affects would be the main setback, now I'm finding that the one thing that may help me could be out of my reach because of excessive costs. What kinds of out of pocket costs could in today's medicine would not be covered? So far all my previous surgeries, treatments, and labs/scans have been covered. I know that some sponsored research trials have structured studies that cover most of the treatments. What other costs could come as a surprise?

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #6

    HFTG61, I would suggest come and posting on the Uterine board. There are some women who have participated in a clinical trial, and since it is almost a month since you posted, maybe you have already found out what the costs they are saying could be.

    Clinical trial costs are usually covered, so what did they tell you you would need for out of pocket? More and more they are looking at immunotherapy as a front line, not as a 'save it if you need it' type of treatment. They can be pricey, but if part of a clinical trial that is not a cost passed on to you. I am assuming you had genetic testing done as that has determined, and what clinical trials are based on, if you have markers that respond based on other trials.

    I have not checked this board for quite a while. I hope you come back and let us know how you are doing.

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