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I'm new here and looking for some feedback....

EastBayTawni
Posts: 4
Joined: Apr 2019

Hello there,

 

Just looking for some feedback... I am 45 and was diagnosed in September 2018 with what was originally called Stage III Ovarian but eventually called Stage IV Uterine.  My CA125 was over 3000 at that time.  I had a full hysterectomy as well as my appendix and a few tumors on the lining of my abdomen area removed.  Surgery alone dropped my CA125 to 24.7.  6 cycles of Taxol/Carbo and my CA125 is 7.4 and my PET came back with no suspicious uptake.  There were 2 liver lesions that CT w/ contrast were showing, tiny little things, about 14mm, that the normal CT didn't show after the chemo.  I did really well on the chemo treatments... no horrible side effects, in fact I stayed working full time during the entire process thanks to a very understanding boss who let me build my own schedule around my treatments.

My Gyn Onc and Medical Onc want me to do 12 treatments of Taxol only, 1 per month, as maintenance treatment.  I'm leaning toward doing them because I feel like if it comes back I'll be kicking myself for not doing it and playing the "what if" game and also, it is a Stage IV diagnosis and I did ok with the Taxol/Carbo mixture, I assume I'll do OK on the Taxol alone.  Has anyone here done the maintenance treatments and if so how did that go?  

 

Thanks in advance.

Tawni

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

I don't have any experience with this type of treatment, but perhaps one of us here will have some. We are an active board so hopefully someone can add their own experiences. I wanted to respond with a warm welcome, and glad to meet you. 

xxoo

Denise 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Hi, Tawni - I, too, am Stage IVB; mine is endometrioid type, Grade 1. My CA125 has never been higher than 8. After chemo with carbo/taxol ended, my medical onc wanted to put me on a maintenance treatment permanently, of carbo/taxol. However, unlike you, chemo made me so very sick that by the end I couldn't walk across the room and needed multiple blood transfusions (I'm 56). I declined because I could not imagine living like that.

My gyn onc, however, did NOT want me on maintenance, told me it would probably kill me, and put me on an aromatase inhibitor instead. So far, so good, but I'm under no illusions -- everything could change from one scan to the next.

It certainly sounds like you tolerated chemo far better than I did, making the maintenance dose a reasonable possiblity. Have you discussed additional or other treatment options with your onc, so you know your full range of options?

Northwoodsgirl
Posts: 526
Joined: Oct 2009

Hello! I also don’t have the same experience but it sounds like additional chemo will help with the metastatic spread.  My question is did you or will you have radiation?

Be sure to use ice on hands and feet to help minimize the neuropathy which may be likely with more chemo. On a side note I just saw a news story on Minneapolis tv station KARE 11 (NBC) about the University of Minnesota having developed a blood test (able to identify 5 biomarkers) to detect late stage ovarian cancer in women. They are now working on blood tests to find biomarkers for early stage ovarian cancer.  Take care! 

Lori

SF73
Posts: 261
Joined: Oct 2017

Hello Tawni

How much testing was done on your tumor? What is the grade? What is the histology? Endometriod or other?  Is your tumor ER / PR positive? (If so hormonal treatment like aromatase inhibitors or Megace can be an option) If you had the genomic profiling of the tumor done (at Foundation One or at a nearby teaching university to learn all the acquired mutations not the inherited ones which can be determined by simple genetic testing) that may also reveal some other treatment options.

I am also 45 years old. Like you, I also tolerated chemo well. After frontline treatment I continued taking Megace for about a year. As far as I can tell, maintenance chemo is a more common practice with ovarian cancer. Avastin (angiogenesis inhibitor, preventing cancer to form new blood vessels to grow and metastasize) or PARP inhibitors (I dont know what these do) are more common drugs for maintenance but many are also on some chemo - either the one they were on during frontline treatment or something completely different. Ovarian Cancer board here is not very active. You can join Inspire.Com's Ovarian Cancer Board if you are interested. Wishing you all the best.  

EastBayTawni
Posts: 4
Joined: Apr 2019

Thank you all for the feedback and the welcome :)  Everything last September happened so quickly and this is the first kind of chat board that I've signed up on.  I never had any pain or off discharge that indicated cancer/something was wrong.  I was already on a weight loss program for 2 years before diagnosed so the weight loss wasn't abnormal either.  But by the time we knew something was wrong it was almost too late.  It was discovered on a Friday, I met with the Gyn Onc the following Monday and had surgery that same Thursday.  Only my closest handful of friends, my mom and siblings, one of my aunts and my boss even know about my diagnosis.  Very few of them have experience in knowing someone close with cancer and none of them have gone through it themselves.  This seems like a good communitity to be a part of and I am appreciaive.

For some answers - I am Stage IVB Grade 2 Endometrioid Adenocarcinoma of the Endometrium.  Isn't that a mouthful and a half?  They did some molecular testing at Caris Labs and came back that there was no genetic mutation that would warrant PARP inhibitors.  Because of this, the Gyn Onc is the one that initially recommended the Maintenance Chemo.  The Medical Onc agrees with him.  I am not doing any radiation at this time, my Gyn Onc has said from the beginning of my treatment that he wasn't really keen on radiation in the area if they could avoid it because of damage that it could do to other parts of my pelvic organs/instestines.  He actually told me that based on the CT scan (before the PET scan) and my CA125 numbers that he had  a case to just say that I could move to regular 3-6 month scans and blood tests and then if all is well, see you in a year.  However, because of the advanced stage at diagnosis and because I tolerated chemo well (which I know is SUCH a blessing) he wanted to be more agressive with treatment.  Hence the PET and the recommendation for the 12 months of maintenance chemo.  Again, PET came back totally clean with no suspicious uptake seen.  They scanned from my head to mid-thigh.

 

Thank you again for the feedback and suggestions, and mostly the welcome :)

if these answers leaad to any additional feedback or thoughts, I look forward to them!  This has already prepared me for asking some questions of my medical team.

 

Happy Friday!

Tawni

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

I am also Stage IVB Grade 2 endometrioid.  I also had no symptoms and my cancer was discovered incidentally.  They expected Stage I Grade 1, and I had a robotic hysterectomy.  All of us were surprised by the advanced disease.  I had Carboplatin/Taxol and then was switched to carboplatin/taxotere because of a bad reaction to the taxol.  Chemo was not fun but I tolerated it really well after that first one as well.  I did not do radiation either - after much discussion we decided to reserve it for recurrence.  I only have a gyn/onc, not a med/onc, but no one mentioned maintenance chemo or any sort of follow-on like herceptin or metformin or megace.  I asked about it but was told we would utilize whatever was appropriate if I recurred.  I had some testing on the tumor and genetic testing, which showed my tumor was MSI-H and that I had markers for Lynch syndrome but MD Anderson felt I did not have it.  I wish you the best as you move forward and would love to hear what you decide and how it goes.  I am a little older than you - was 57 at diagnosis and am 59 now.  Surgery 4/17, chemo 6/17-10/17.  CT scans 10/17, 10/18 NED.  Physical exams every 12 weeks.  Next scan at the 2-year mark in 10/19.

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