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I am glad you have found us and sorry to hear about your recent diagnosis.
To clarify, are you HGSC or LGSC?
I have read about HIPEC but not had it myself.
If you would like to share, what is your oncologist recommending? Have you had any treatment thus far?
Welcome to the group and would like to welcome you to the Teal Tea Thursday's. It is an open forum where you can engage with fellow Teal Sisters.
Looking forward to seeing your next post.
I haven't gotten much information yet about treatment planning, but will share what I find out.
I haven't had any treatment yet, but have started doing my research and was wondering if others had been given the HIPEC option, and what their experience has been.
From what I was told today, I have extensive involvement in the abdominal cavity, so am not a good candidate for initial debulking surgery and will be starting with 3 rounds of chemo, with potential surgery after that.
Because of the extensive peritoneal involvement, it makes sense to me that intraperitoneal chemo would be the way to go, and I know that this treatment would happen during the debulking procedure, so thought I would investigate this option ahead of time.
Thank you for the invitation to Teal Tea Thursdays.
I have a planning meeting with the oncologist(s) this Thursday, so won't be able to attend this time round but I'm sure I will be joining the forum in the near future and am so grateful already for the opportunity to connect with others who are going through this.
I know that the support will be very helpful.
No worries, your meeting is important and hopefully you will get some more answers.
So do you know if it is low grade or high grade? Or something else?
If you don't have it already here is the link for a free copy of By Your Side.
It has a lot of good information in it.
I was diagnosed with Stage 3C low grade primary peritoneal cancer which is treated the same as ovarian cancer. Treatment options for low grade are not as many as high grade but is supposed to be more slow growing than high grade. I underwent debulking surgery, bowel anastamose and radical hysterectomy on March 17th, 2021. It was followed up with 6 rounds of chemo which I completed on Aug 13th, 2021. I was deemed NED in Sept 2021 and am currently recurring and have been deemed palliative. My type is acting more aggressive than it should and I have tissue currently in the lab to see if they can identify any specific genetic markers. In the meantime, I take Letrozole.
There are many gals here who have high grade and have had successful journeys and then there are those that have recurred (some once and others more) and have treatment options still.
Once you know more, you will be able to put what you are looking for in the search bar and read anything someone has posted about it here.
Know we are all here for you for both the good things and bad and same with the emotions that go with it. Reach out anytime and don't be afraid to ask questions.
Wishing you all the best this Thursday.
Oh boy, what a journey you've been on already
I appreciate so much you taking the time to respond to me, given everything that you're dealing with in your own life.
I hear you on the good and the bad and the emotions that go with it.
It's only been 48 hours and I've already been through so many ups and downs.
I have high grade serous carcinoma, seems to me to mainly peritoneal, but I will get those specifics tomorrow.
I have researchers in my family, and some medical people, and we've all been doing a crash course on available treatments, so that's where my head is right now. Wanting to make sure I find the best path possible.
Thank you again for your kindness in responding.
I hope your day is a good one.
You and I share the same diagnosis. But for me that was early 2017. My treatment plan was to start with a hysterectomy and full debulking followed by 6 cycles of chemo using the HIPEC procedure and this made perfect sense to me as well. The plan was to give me traditional Carboplatin/Paclitaxel via intravenous for one or two cycles and the switch me to the HIPEC procedure using Cisplatin./Paclitaxel for another 4 to 6 cycles. Unfortunately I had a severe allergic reaction to Paclitaxel in the first cycle of treatment and that caused a cancellation of the IIPEC in favour of IV treatment using Gemcitabine as the alternate drug. Today I am in my 6th year of treatment as recurrences surface. A close friend however was also diagnosed as HGSC stage 3 C at the same time as me and was treated using HIPEC. She just celebrated 5 years NED. i feel my treatment might have been more successful with out my complications.
Tbe topic of HIPEC has not come up for discussion for a while though. Just go to the search box in the upper right of your screen and type in HIPEC and that should pull up any discussions on the topic.
Also, as Strongwoman recommended order By Your Side. It's a wonderful, but generic guide to take you through the aspects of diagnosis through to completion of primary treat. To order ;https://ovariancanada.org/living-with-ovarian-cancer/support-resources
A slight correction from Strongwoman' s recommendation. Teal Teas are once a month, on, the Zoom platform, and you must register to attend and receive the link to register. Session date differ each month but generally all held the 3rd week of each monrh. 1 session for anyone, 1 session for young survivors and 1 for those surviving 10 yrs +
Teal Thursdays is this forum. All online, every Thursday at 1pm ET. It's ideal for immediate feedback to your questions or concerns and discussions are held providing a data base you can lean on, There is not need to register. Just sign in to OVd and then click on the discussion topic Teal Thursday........
Good luck with next steps. Hopefully we'll be hearing good news from you as you begin and continue your journey ro wellness. There are lots us who've won the battle on the first try. But if that's not the case there are so many, like me, who've learned to live successfully with the disease. And you have the fully support our army to ensure no one walks alone.
Please keep up posted on your progress. Reach our any time you have questions or concerns or want people ro celebrate a success.....we love those celebrations, little or big.
How did it go yesterday? Are you on information overload and still processing? Know we are here when you are ready to share anything. You are in our thoughts.
Hi and thanks to both of you for your support and interest.
I'm doing pretty well at the moment. Mostly feeling gratitude for having a treatment plan and for having even the possibility of hope for SOME time, however long that might be. Interesting how quickly expectations have changed and how the idea of maybe a couple of years now seems like a total gift.
I'm the kind of person that thrives with a challenge, and this is definitely that!
It's also an adventure, in the sense that I have NO idea what will happen.
Truly one day, one moment at at time.
I talk such a good game about living in the present moment, and now it's time to walk that talk
I know that the road ahead will be fairly brutal, and I know that I will have times in which I will struggle, but at the moment I'm in Let's Get the Show on the Road mode, and my peeps are in that frame of mind too. Team Petra is getting geared up
Brief details: I have HGSC, Mullerian origin, probably fallopian tube, most of the cancer is peritoneal, very little ovarian involvement, peritoneal nodules are not huge or numerous, but unfortunately placed: liver, stomach, bowel, as well as omentum, so I am not a great candidate for primary debulking surgery and instead will do 3 rounds of carbo and paxol to hopefully shrink the nodules and make for an easier surgery. Am opting for intraperitoneal chemo as well as IV chemo following surgery - I think that part is going to be pretty nasty but also intuitively makes a lot of sense to put the chemo where the tumours are so am gung ho on the idea.
When they do the surgery and have a lot of tissue samples available, i am going to send the samples to a lab for genomic and biomarker testing in preparation for the expected return of cancer and the hope of getting in on some clinical trials at that point.
But one step at a time, and right now what I am doing is eating some lunch to keep up my strength
Thanks for your support!
Sounds like you received most of the answers you were looking for prior to your appt. You sound like you feel confident about your treatment protocol going forward as well. This is good and that you have supports around you as well.
You have some great ideas going forward and I wish you all the best with treatment. Know we are here for whenever you need and are supporting you along the way.
Thank you so much. I know it will be a long process, and I know that my energy levels and mood will fluctuate, and I am so grateful that this online community exists. I appreciate your kindness and support.