UPSC - Has anyone done SBRT for a recurrence

tequila
tequila Member Posts: 15 Member

Has anyone done Stereotactic Body Radiotherapy (SBRT) to kill a nodule that that grew  (from 1 cm to 3 cm) while undergoing chemotherapy that in 3 rounds killed everything else and CA125 is now  normal.

Comments

  • MAbound
    MAbound Member Posts: 1,168 Member
    Genomic Testing

    I didn't have anything grow during chemo, but the SBRT sounds like a good idea for your circumstances. Then you may also want to look into genomic testing to see what else would work on that nodule since it seems to be resistant to your current chemo. That's what's concerning and arming your oncologist with more information could only help you get what would work.

  • tequila
    tequila Member Posts: 15 Member
    edited November 2020 #3
    SBRT

    I did 5 rounds of SBRT radiation without any side effects but it only slightly shrunk the tumor. I will be meetimng with my gyne oncologist this week to see what the next course of action will be. I expect more chemotherapy.

     

  • tequila
    tequila Member Posts: 15 Member
    edited November 2020 #4
    Radiation

    Sorry guess radiation is a treatment not a round.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    edited November 2020 #5
    I'm sorry, tequila.  Please

    I'm sorry, tequila.  Please let us know what the plan is next.  Prayers for you warrior.

  • tequila
    tequila Member Posts: 15 Member
    edited November 2021 #6
    UPSC - Living with Cancer - Be Positive and Proactive

    I am now in my 10th year of living with UPSC, first diagnosed with Stage 3A in September 2012. I had two sugeries Oct. 2012 and August 2015. I have been to chemo 62 times - 26 normal rounds and 12 rounds of Dose Dense. I had numerous chemo drugs but what worked the best for me was dose dense taxol - I got 13 months of no treatment after only 3 Rounds of dose dense taxol in 2018 - 2 weeks before Christmas - early Christmas present. I had 5 treatments of SBRT radiation - didn't work. I get a CA125 blood test every month - it does not always work for UPSC patients but it did for me. I took a break from chemo May 7, 2021 but I expect to be having treatment soon. I am meeting with my gyne oncologist this afternoon.

    My message to newly diagnosed cancer patients  is  yes this is a very aggressive, highly recurrent cancer but everyone is different. I chose to live and am  extremely proactive and get through chemotherapy fairly well - a few exceptions. I never judge anyone else on their decision to do treatment or not as I do not know how they feel but my doctors say that my positive attitude does not hurt.

    I pray and thank everyone who posts here - I wish you good health.

     

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    edited November 2021 #7
    hey tequila, thank you for

    hey tequila, thank you for stopping in to give us an update.  May God bless you on this journey.  Hugs.

  • FourBee
    FourBee Member Posts: 52 Member

    Tequila,

    Ten years! When you were first diagnosed I don't believe that you could have looked forward a decade and known that with a good working relationship with your gyn onc you could uncover what treatments work for you. Fantastic. Thanks for sharing.

    FourBee

  • Dak82
    Dak82 Member Posts: 109 Member

    Hey Tequila,

    Deb 1 here. I am stage 3c2, grade 3 endeometrial adenocarsinoma that did not respond to chemo. I have been on immunotherapy drug dostarlimab since June with mixed results. I am starting SBRT treatment on 13 Dec for a largish tumor in the pleural space of my upper anterior left lung that is causing significant pain. The radiation is an attempt to destroy that tumor or at least modify it enough to relieve the pain. It could be months to see results. I hope the dostarlimab will start having an effect on my larger tumors. Continued growth in the lungs and pleural space is disturbing!

    Cheers,

    Deb 1

  • tequila
    tequila Member Posts: 15 Member

    Thank you all for your replies. SBRT has been very successful in treating lung cancer and even brain cancer. Deb I pray that you will get great results especially for the pain. Yes unlike chemotherapy SBRT can still be working long after you finish the treatments and waiting can be frustrating.

    I did SBRT for enlarged distal left external iliac lymph node that did not respond to chemotherapy. It was about one inch from the top of my left thigh.

    I will like to correct what I said in my post of November 2020 ( 4 months after 5 SBRT treatments) when I said there were no side effects from SBRT. Fast forward to February 2021 and I first noticed that the top of my left thigh was stinging and felt warm to touch. Three petscans since then confirmed that there is a skin thickening in the proximal left thigh that is inflammatory in etiology. So basically I was burnt and I now have stinging and burning for about 4 inches down the thigh and parts seem dead as I can stick a needle in and can't feel it. It does swell down the leg although it appears to down overnight. I am not complaining just stating the facts.

    So after no treatment for 7 months, I started taking topotecan chemo today - 5 days in a row for 30 minutes. Then I have 2 weeks off and the cycle repeats for 4 cycles in total - then a petscan. I have not had this chemo drug prior.

    Other than the left external iliac lymph node my immediate concern is an increase in size in lymph nodes in the upper quadrant of the abdomen which left untreated could pose a risk for biliary duct dilation.

    I had an option of doing conventional radiation and chemotherapy and I chose chemotherapy first.

    I have never had a symptom or pain from cancer ever. (just treatments) CT/Petscans and CA125 and a wonderful gyne oncologist have extended my life and I am very grateful.