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Thread: Stage IV Ovarian Cancer

  1. #1
    Newbie New User
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    Stage IV Ovarian Cancer

    Hello All!

    Recently my sister was sent to the ER due to severe swelling and fluid build up in her abdomen. During the procedure it was revealed that she had Ovarian Cancer...High-Grade Ovarian Serous Sarcoma to be exact. After waiting around for a few tests, she was then off for a total hysterectomy. The GynOnc discovered that the cancer had metastacized to a small portion of her colon and into her peritoneum...but nowhere else. 95% of all visible cancer was removed, with just a spot that was unreachable left behind (smaller than 1cm) After the procedure, the surgeon staged the Cancer at IV. This was odd to me because there was no metastasis to the lungs, liver, etc...which from what I've read, is usually what designates a stage of IV. I'm no expert though...

    Fast forward to today. It is worth noting that after her surgery, the doctor had requested that she fully recover from the surgery for about 4-5 weeks prior to starting chemo. The plan was for her to get a port installed today (1/22) and begin chemo tomorrow (1/23). On Sunday she was having difficulty breathing and went into the hospital on Monday (1/20) and was found with more fluid on her abdomen, and now on her right lung). To be exact over 1.2 litres of fluid was drained from her lung alone. The port is now not getting installed (so she can rest) and will begin chemo (Carboplatin) tomorrow. The procedure for the port will take place once she is healthy enough, but chemo will be delivered IV for now.

    I'm frustrated because I feel that in her 4 week wait time for chemo, the cancer has now spread even further. I understand that a total hysterectomy requires healing time, but it seems to have come at a major cost. Is this even normal for a wait like this? Just curious to see what others have experienced. Thank you all for your love and support!

  2. #2
    The wait is normal. The body needs time to heal before taking the abuse of chemo.
    Unfortunately Ovarian Cancer is an insidious disease full of catch 22ís

    With that said, assuming the chem0 does its job, the ca 125 marker will drop, and the fluid should start to dissipate after a few weeks.mof course everyone is different

    My wife was unable to have the surgery right away, it had to be cancelled due to blood clots. So they did 9 weeks of chemo. After about 3 weeks, the fluid started to resolve and her numbers dropped quickly. Then she had surgery, and then, after a 3 week rest, restarted an additional 9 weeks of chemo.
    We are almost 2 years past the end of treatment and she is NED (no evidence of disease) and enjoying life.

    I truly hope the treatment does itís job and your sister does well.

    P.s. Staging is usually done by the pathologist, not the surgeon. And probably your sister was staged a 4,, due to spread to the colon. Just my guess
    Diagnosed at age 64 (in November, 2014), PSA 4.3
    Nov 2014 BX 3 of 12 cores positive original pathology G8. Johns Hopkins second opinion, G6
    Surgery with Dr Ash Tewari Jan 6, 2015
    Post surgical pathology, stage T2c, bilateral disease, upstaged to G7(3+4)
    5% of Prostate involved in Tumor. Organ confined, Margins, SV, lymph nodes (9) all negative, PNI positive
    PSA <.02 until (uh-oh), 2/17 .02. Then 5/17-.033, 8/17-.033, 11/17-.046, 4/18-.060, 6/18-.068, 7/18- .082, 8/18-. 078.
    Decipher score low risk, .37
    ADT/Firmagon started August 2018. SRT to start SEPT 2018. Finished SRT November 2018, Finished ADT Feb 2019
    T=7, PSA <.05

  3. #3
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    Thank you, Pratoman!

    My sis (who is only 32 btw) had her first found of chemo yesterday. Unfortunately, she had an allergic reaction to the plaxitacil and became asphyxiated. She was given some steroids prophylactically but still had the reaction. The nursing team rushed in and gave an epi-pen shot and some more steroids to combat this. After everything settled, the oncologist stated that he really wants this treatment to work, so they are going to try different dosage for next time and monitor her closely. It's been tough for her to catch a break, and all of the news we're getting keeps going in the wrong direction. Staying as positive as possible through all of this and hope the next round goes more to plan.

  4. #4
    Sorry she is having such a difficult time. I hope they can tiger a dose that is safe and works for her
    Good luck
    Diagnosed at age 64 (in November, 2014), PSA 4.3
    Nov 2014 BX 3 of 12 cores positive original pathology G8. Johns Hopkins second opinion, G6
    Surgery with Dr Ash Tewari Jan 6, 2015
    Post surgical pathology, stage T2c, bilateral disease, upstaged to G7(3+4)
    5% of Prostate involved in Tumor. Organ confined, Margins, SV, lymph nodes (9) all negative, PNI positive
    PSA <.02 until (uh-oh), 2/17 .02. Then 5/17-.033, 8/17-.033, 11/17-.046, 4/18-.060, 6/18-.068, 7/18- .082, 8/18-. 078.
    Decipher score low risk, .37
    ADT/Firmagon started August 2018. SRT to start SEPT 2018. Finished SRT November 2018, Finished ADT Feb 2019
    T=7, PSA <.05

  5. #5
    Senior User
    Join Date
    May 2014
    Posts
    430
    Quote Originally Posted by travelinman View Post
    Thank you, Pratoman!

    My sis (who is only 32 btw) had her first found of chemo yesterday. Unfortunately, she had an allergic reaction to the plaxitacil and became asphyxiated. She was given some steroids prophylactically but still had the reaction. The nursing team rushed in and gave an epi-pen shot and some more steroids to combat this. After everything settled, the oncologist stated that he really wants this treatment to work, so they are going to try different dosage for next time and monitor her closely. It's been tough for her to catch a break, and all of the news we're getting keeps going in the wrong direction. Staying as positive as possible through all of this and hope the next round goes more to plan.
    It is important to be at an NCI hospital. At least a second opinion from an NCI hospital.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  6. #6
    Senior User
    Join Date
    May 2014
    Posts
    430
    There is another site for ovca on Inspire. A lot of traffic is there.

  7. #7
    Newbie New User
    Join Date
    Nov 2018
    Posts
    4
    I agree with the above that there should be a second opinion. When my mother was diagnosed we researched especially nci hospitals that had a very good gynecologic program. It is normal to have that long wait after surgery, for my mom we waited 6 weeks post op for first chemo as it was done in the middle of the holidays. We were not happy, but after the first chemo cycles we saw the difference . Push the doctors for Ca125 counts which is a tumor marker for ovarian cancer, also inquire about IP chemo if possible, it greatly improves chances.
    https://health.usnews.com/best-hospi...ngs/gynecology

 

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