Mayo Clinic Connect
Oncologists Gerardo Colon-Otero, M.D., and Tri Dinh, M.D., specialize in gynecologic cancers and discuss types of cancers and treatment options, as well as answer questions from live viewers.
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The updated version(2019) of the NCCN guidelines for ovarian cancer has changed the recommendations for stage 1A OCCC treatment to "observe" as an option. For many years, the need as well as the efficacy of chemo (carboplatin/taxol) has been questioned for this group of patients not only by international researchers, but in the U.S. as well. They appear to have only added one new study in the references for the 2019 NCCN version with regards to this specific situation. I had very strong reservations about subjecting my body to chemo, yet it was strongly recommended by two of the most reputable institutions treating cancer so I did follow this course. I'm now really concerned about the long term consequences of having had this treatment when it probably wasn't necessary (secondary cancer). I never understood why the NCCN included treatment of ovarian clear cell carcinoma with all of the other types of ovarian cancer as it is not the same disease. At this point, I am wondering why it took this much time to change the recommendation with all of the evidence that existed and to ask for reassurance that I did not allow for irreparable harm to my body by subjecting it to these toxic chemicals.
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Oh! I was diagnosed at 3C three yeats ago,had a hysterectomy and carbo/taxol chemo treatment for 6 months and now just carbo(almost finished) for a recurrent spot. I am exhausted but the spot seems to be disappearing. “Irreparable harm”? Please explain. Will I ever regain the strength I once had? I am being encouraged to exercise. Feel so weak!
Hi @starko @rochellewisner @pauldale4 @leannn @odette @susu2 @chowmama2 @pat417 @margaret2 @corinneberg @bruges @hhereford @bluemeade7 @patricia5 @goldengirl2 @bjkingape @slm101 @jeanadair123 @gemma1960.
I'm writing to let you know about a Video Q&A happening today (May 9) at 2:30 Central time (3:30pm Eastern time and 12:30 pm Pacific Time). The Q&A will be hosted my Mayo Clinic oncologists Gerardo Colon-Otero, M.D., and Tri Dinh, M.D., who specialize in gynecologic cancers.
Please post your questions before and during the live session. The session will also be recorded and archived on this page so you can watch it any time. Hope to see you here in an hour. – Colleen
I was there too! OC 3C. Do the exercising as it will help you to regain your strength. Whenever the chemo seems intolerable, I forced myself unto the treadmill, perhaps slowly but with a minimum of 20 minutes and it helped relieve the trauma! Meditate, eat Mediterranean, get a new hobby. Exercise as much as possible! You will be well!
Liked by dsturgeon
RAD50 mutation: what does this mean? BRACs all negative.
What medication is recommended for post chemo for RAD50 mutation?
Is organic honey on the good or bad list of foods post chemo?
Liked by Colleen Young, Connect Director
Will we be able to view this later? I am at the hospital with my newborn granddaughter.
Sorry just read the rest of your message. I will have to watch it later. Thank you!
Congratulations on the brand new addition to your family @odette.
Your question is being answered right now.
Thank you for taking the time to do this Dr. Colon-Otero & Dr. Dinh. Very informative!!
Thank you! It has been a whirlwind of activity. Such a blessing. Thanks to everyone for arranging the program on gynecologic cancers, especially the doctors who were so informative. I will write to them when I have some free time…busy being a mom and grandma at the moment. And a Happy Mother's Day to any mothers on this Mayo Clinic site.
@odette same to you
Liked by odette
Hope You are doing well and this email goes just to you, Odette. Thank you for your informative posts, I enjoy reading them.
I have a question for you. Are you on some type of maintenance therapy since you finished chemo? My gyn suggested me to discuss Avastin therapy with my new gyn in Washington ( it's my primary residence). I left Tucson (snow Bird) soon after finishing my chemo, 6 cycles.
I have Apt with my new Gyn on 13th this month and I will hear what he says about maintenance thrapy. In the mean time, I like to find out what other people are doing for post chemo maintenance. I eat plant based diet mostly, do yoga and Zumba, walking, and playing on my harp.
I too am in Washington and just finished my second round of chemo today but am weakened in the blood dept. and will get a transfusion tomorrow morning. After my ovarian surgery ,during chemo I hD 5 TRANSFUSIONS. THE tumor is gone (probably a metasticize-sp?) and I will go onwith pills after my body has settled down from all this disruption. I have fallen a couple of times because my legs are rubbery. I have read on this feed that AvastTin is very expensive and I went on this second chemo to avoid taking it. What is now is not that! I will see my surgeon n Seattle in a few weeks. This is a work in prgress. I have very good,communicative doctors and my husband always goes with me and listens hard,with his computer. M y life is coping with new challenges but not a death knell,as I felt when I first got the diagnosis in 2016. Ask questions and seek lots of answers.
Liked by JK, Volunteer Mentor
Hi Miyong, I am sorry it has taken me so long to respond to your message. Thank you for writing to me. I have been very busy in the past six weeks following the birth of my first granddaughter. A baby brings such hope and happiness to a family. My four grandchildren are truly a highlight in my life…and a wonderful distraction.
To answer your question, I am not on any maintenance therapy since chemo. I do take an 81 mg aspirin daily. It has been recommended for OC and specifically clear cell.
I, too, eat a mostly plant based diet. Exercise is a regular part of my day…running, walking, biking, yoga. This seems to really help me emotionally.
Although I am retired, I am a scientist by training (not in CA research though) and I follow the latest research on OCCC (SGO, ASCO, major medical journals, etc.). I have attended a meeting at the institution where I received my care and the physicians/researchers have been very responsive to my questions. A large percentage of women with OCCC have/had endometriosis (as do all the women in my family) so I try to study that aspect as well. I had germline genetic testing at my clinic to determine if there was a mutation other than a somatic one. I am also in a few ongoing studies which have provided me with information which helps me in my pursuit of understanding this disease. However, I must limit my time on these efforts and focus on my daily life.
I hope this finds you well. Do stay in touch. Enjoy the summer!
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