1st Recurrence

[Saintgermain]

Hello I know some chemo regimes are similar to ours in the states for the most part I have another appointment with my Onc this Friday with my concerns regarding 6 Carbo/Taxol/Keytruda cocktail would love to hear what was chosen for a 1st recurrence and how your doing. Thank you!

[Sw21]

Hello, sorry you’re back to chemo. I am having taxol/carbo for first recurrence (really small persistent disease). I had a second debulking surgery, but they could not remove all visible cancer. I wanted carbo/doxil because frontline was so hard on me, but onc strongly wanted me to repeat taxol/carbo. I think she wants to get as much mileage as I can from each drug now. I ended frontline carbo/taxol 4/2018 but had continued avastin and tecentriq on a clinical trial thru 3/2019. Good luck to you🌸

[Saintgermain in reply to Sw21]

Hi Sw21,

Really appreciate your input sounds like you and I are in the same boat unfortunately. I also brought up Carbo/Doxil same as yours wants Carbo/Taxol mine is very small as well CA125 just increased and 3 tiny lymph nodes showed up a Petscan everything good 3 months ago I've been NED for 22 months.

[Sw21 in reply to Saintgermain]

Let’s hope we get back to NED! Please keep in touch.

[Saintgermain in reply to Sw21]

Please keep in touch I would love that not pleasant but we have to push thru the storm my Onc feels Carbo/Taxol will do the trick praying for both of us. Hugs from Chicago

[Tealgirl7 in reply to Saintgermain]

I seem to be in a similar place . I am dealing with stage 4 HGSC over 17 years. I've never been NED. At the at the moment I have three nodes they are watching around my pancreas. My disease generally has been only lymph node involvement. I don't think radiation is an option for where mine are. I had a huge one in my neck that disappeared after my second round of carbo taxol last year.I am now on a trial involving Niraparib and Avastin. Please keep in touch and best to you

[Saintgermain in reply to Tealgirl7]

Hi Teal Girl,

17 years you are a true warrior and never been NED you are a true inspiration I read somewhere that getting it in the lymph nodes is a bit more treatable as a chronic disease. I so wanted radiation but they were in 2 different spots clavicle and retro peritoneal my understanding is that if it’s one area radiation is an option not sure if the pancreas is an option. I actually saw a picture of a very large one in the neck I find that the area for recurrence very strange as it’s so far from the ovaries how did you fare with the Carbo/Taxol aside from hair loss? I just got back from having my port put back in my Onc had me take it out 2 years ago probably not the best call. Like yourself I was tired of being poked and prodded with the last 2 biopsies I’m no cream puff but their idea of conscious sedation was a joke I insisted and got an anesthesiologist today wonder drugs! Please let’s keep in touch! Hugs from Chicago

[Erinna72]

Hello there from Greece!

My second reoccurrence was carbo and Taxol but had to change to cisplatin as had a nasty reaction to the carbo. There are many different combinations- I’m finishing now cisplatin with gemcitabin . I have also had cisplatin with Caelyx . I’ve had 5 lots of chemo since 2015. The plan is to put me on something to keep the cancer at bay - I’m not NED but….

Good luck with your treatment

[Saintgermain]

Hi Erinna

My dream is to one day go to Greece beautiful place sit by the Mediterranean with a nice glass of Greek red wine love, love Greek food. My Onc mentioned even though I pretty much sailed thru frontline with Carbo/Taxol there is the chance of a reaction. Since 2015 your an inspiration not easy wrapping ones head around a recurrence but have to push thru each detour theres a lot of drugs in the pipeline. Hugs from Chicago

[Littlefluffycloud]

Hello SG,

I saw that you are on a combination including Keytruda. Is that often used for OC in the US? Or is it specifically for Low Grade? Just curious as I’ve seen wonder drug news articles regarding it but for other cancers and my onc said it isn’t used for OC here but maybe that was specifically for my HG serous epithelial? I hope it is a wonder drug for you xBianca

[Saintgermain]

Hello Bianca,

My type is Endometroid 3B they drew tissue from my clavicle which confirmed it. I'm in Chicago a university hospital system. Yes, in the states its used for OC a Friend and Survivor just came off of a 2 1/2 trial with favorable results. My Onc since I was so receptive to carbo/taxol frontline and platinum sensitive showed me a study that showed promise adding it to the mix. As your HG serous I think your chemo sensitive unlike LG Serous which is not as much. I would definitely check into it typically it would be administered every 3 weeks for 30 minutes there's documentation that alone tumors have decreased in size or disappeared. I am so trying to wrap my head around the recurrence, but I think the onc is going in with the big guns as I got 22 months NED. I was hesitant to have her add it to my recurrence it is in a couple lympnodes tiny hardly showed up on a pet scan but my CA125 hiked which is a good indicator for me my Onc said she didn't want to watch and wait which I agree with and if these cells broke away there could be more of them hiding. Thank you I'm hoping its a miracle drug to I'll keep you posted please don't hesitate to ask my any questions you may have. Tammy

[Summergold2]

My first reoccurrence was treated 6 rounds carbo/doxil(I believe called Calyex) it really knocked it back after only 3 round but I completed all 6. Kept it at bay for 5 months. I have a very aggressive HGSOC. I have been fighting for 4 years this Dec. I have never been NED more than 5 months. Went off chemo for 2 months and it went crazy like a dandelion. I am doing Abraxane now and can be on this until my bloods won't handle it. It has really attacked my liver so hoping those nasty things will shrink they are at 3 by 5 centimeters If we can get rid of most than there is a chance for radiation.

Here is hoping you have way better luck than me but I still have good quality of life ........I went riding (horses) for over 2 1/2 hours a couple of days ago and went for a mile and half hike

Don't give up learn as much as you can about your particular disease Knowledge is power

Teal Ladies Stay Strong!

[Saintgermain]

Hi Summergold

Thanks for sharing what a journey you’ve had I’ve read that some HGSOC’s can be aggressive I am glad that you have a good quality of life a wonderful horse back ride we must stay active and our own advocate I pray that your nasty things shrink and they can get zapped and the side effects don’t take a toll I think that’s the hardest thing about all these meds but we all want to live yesterday knowledge is power Power of Teal we’re a strong bunch

[Twinning]

Hi! Searching for Keytruda and OC and saw your post. Did your doctor proceed with the Keytruda infusion? Have there been noticeable side effects (which might be hard to tell since you were to receive it with two other meds?).

I am on my 3rd recurrence and just put on Gemzar. Doctor said he might add Keytruda to my regimen ( my tumor is PDL-1 positive so I think that is what they look for ). Side effects worry me as I am already fighting looped bowels and the spread of cancer to my abdominal wall. Been a 5 year fight and my options are getting fewer. I am living a good life and just don’t want to deal with any side effects that might be burdensome. Thank you for any info you can share. I hope you are well.

[Saintgermain in reply to Twinning]

Yes, I get my 2nd Keytruda infusion by itself tomorrow the first 6 were combined with carbo/taxol which brought my CA125 from 915 to 15 at my 6th one when I had the Keytruda on its own after #1@ 19 this week's draw it was at 30 but my Onc wants me to still have the Keytruda tomorrow I also started Letrozole 2 weeks ago praying it helps and lowers it as my Pet Scan was clear. The only side effect I have had was a bit of fatigue only lasted a day and dryness on the corner of my mouth no sores cortisone works for that also have your onc watch your thyroid levels closely I had to have my Synthroid increased its back in the normal range. I don't have the PDL-1 expression but had high tumor burden which on my type endometroid there is some hope using it.

If you are PDL-1 I would definitely add it to the Gemzar as there are very good results, So sorry to hear of your 3rd recurrence I may have mentioned mine were tiny found it because of my escalating CA125 in the supraclavicular & pelvic lymph nodes. How are the side effects on Genzar? Have you been on Avastin? The side effects of that one scares me. I so understand you wanting to live life without side effects quality of life is everything. It's a very hard journey to keep the "hamster wheel" out of one's mind this recurrence has thrown me like I'm sure yours did. If I may ask what type you have? Did you get some time between your recurrences? I was 22 months NED.

[Twinning]

I have OC high grade serous 3C. I have never been NED but had a few months of no treatment between recurrences. Doctor said Gemzar was palliative chemo (I now have looped bowels caused by the chemo spreading into my abdomen. Trying to fight off a bowel obstruction). I don’t suffer from side effects; just low white blood cell count that delays my course of 3 weeks on, one week off. Low fiber diet has calmed my tummy and am hoping for the best.

I have received Avastin twice. Added to my first chemo when Cisplatin was thought to be causing hearing loss (2019). My bones ached with that one and had nasal congestion/bleeding each time. My cancer is just too smart and it keeps outsmarting my treatments. My doctor is having my tumor tested to see if Elehere might be right for me if present treatment begins to fail. I am at the University of Iowa so am receiving great care. I treasure these past 5 years (got to see my youngest daughter get married and be at my 4th grandchild’s birth). I turned 66 earlier this year. My appointment on Tuesday will see if my CA125 has come down and if Keytruda might be right for me. Thank you for your input on this drug. I hope your treatment allows you to become NED once again. Best wishes. Colette