Peritoneal Carcinoma

[Quincy62]

Ladies, for the third time I have been diagnosed with Peritoneal Carcinoma (2012,2017) and again May 20, 2019. I did 6 rounds of Carboplatin/Taxol the first two times and currently on Carboplatin/Doxil for six rounds with 2 more to go. I am in desperate need of support. I am trying to stay strong, positive, and taking each day as it comes. I am trying so hard not to give up hope and keep the faith. Is their anyone who has had multiple recurring Peritoneal Carcinoma, who can offer me some form of hope? What treatments are you on or heard of? I was on Zujula but was not able to stay in remission. Reaching out for help!

[KCWM]

Hi Quincy, I’m sorry to hear your about reacurrance’s. I was diagnosed in February 2016 had debarking surgery at that time had carbo and Texel six treatments, what is good for 18 months then a lymph node in my groin appeared so last June till November or year ago six more treatments of Carbo and Doxil. I was put on zejula 100mg with increases to 300. I could not tolerate 300 so I’m back down on 100. Sorry I can’t really give much support just waiting for another reaccurance. It seems like that is the name of the game. Kathy M

[Smashitis in reply to KCWM]

Hi there do lymph nodes reuquire chemo?

[Archeveritas in reply to Smashitis]

Smashitis. They kept my malignant lymph node in my groin as a marker. They could not keep me under anesthesia any longer as I had been under 7 hours already. They cannot remove only one lymph node. They wanted to radiate my entire pelvis, to treat the node, but I did my research and decided to only have the lymph node radiated. I had 12 sessions. No side effects for me. It was a cakewalk compared to chemo. So far, so good. The node has hardened and remained small and silent.

[Smashitis in reply to Archeveritas]

Thanks so much for explaining and sharing your experience. It's amazing to know you did not have a hard time despite the challenges. Hopefully it will keep remaining small and silent

Ok so the bottom line is the lymph nodes should be malignant right before they decide to treat it by chemo, radiation or surgery?

I know someone who has benign lymph nodes that are growing in size and raising her ca125 and wonder what her treatment options would be?

[Archeveritas in reply to Smashitis]

I’m sure that would depend on why the nodes are growing. If they are benign, then she needs to do some research or get a second opinion as to any possible treatment. Even if I had a benign lump in my breast, or anywhere, I personally would still want it removed. Cancer cells can be sneaky. I had that enlarged lymph node since I was 19. It would get tender during my cycles. It became cancerous at 60. It was a secondary area...first was endometrial and peritoneal. 💕

[Smashitis in reply to Archeveritas]

Sure makes sense, it is better to monitor it and get them checked or removed due to the sneakiness. Thanks so much

[Quincy62 in reply to KCWM]

Kathy, You are right it appears to be the name of the game. We must take each milestone as a " VICTORY." I pray that the Zujula works for you and there is NED. 🙏🙏

[KCWM in reply to Quincy62]

Thank you! I think the Zejula will work. Been now 17 months in remission. Feel great.

I had one intra abdominal chemo during first chemo 3 yrs ago and it damaged my kidneys. Have not had normal kidney function on my cbc’s until now. I have been boiling cranberries every morning mixed with oatmeal and sweetened with a little stevia for about a month now. Last CBC showed kidney function within normal range. First time in three years! I think there is a lot to be said for cranberries.

[SBlau Partner]

Hi Quincy, Just to offer some hope I wanted to let you know that at SHARE we have quite a few volunteers on our helpline who have survived recurrences. We have one volunteer who had 4 recurrences in her first 6 years of treatment and is 18 years NED! If you'd like to speak to someone who's been through recurrence, you can give us a call on the helpline at 1-866-537-4273.

Wising all the best for you,

Stephanie

[Quincy62 in reply to SBlau]

Stephanie, Thank You! This gives me something positive to hold on to. There is HOPE!!! Again, THANK YOU!!!

[Fixerupper1234 in reply to SBlau]

Thanks Stephanie. This is uplifting for all us with this beast of a disease.

[Archeveritas]

Hi Quincy. I always work hard to try and find some kind of silver lining ; which can be very difficult at times. I am only 2 years NED from primary peritoneal cancer. I know my chances of recurrence are high. I think you are a champion. Look how much you’ve survived! I also had a malignancy in groin. I had just that node radiated. I think that if nothing has metastasized to lungs or breast, that is a positive thing. Please keep us posted and try to stay strong. Easy words to say; but on this site, we know that the words ring true.❤️

[Quincy62 in reply to Archeveritas]

Archeveritas, After reading your post it made me step back and really look at how far I have come. You saying I am a Champion made me feel like one!💪 Words are a powerful thing!!! THANK YOU!!!❤

[Jules_PPC]

Hey,

I hope this finds you a bit better. I was diagnosed with PPC 3C in November of 2016, I did six rounds of Carbo/Taxol before I had my debulking surgery, which was done laparoscopically. I went to MD Anderson Texas for a second opinion, which my GYN Oncologist totally supported. My doctor had planned to do two more treatments of Carbo/Taxol after my surgery, and start me on Avastin, MD Anderson recommended doing 3 treatments and no Avastin, there were no studies at the time that proved it extended survival time by more than a couple months. Per MDA, anyway. Meanwhile my cancer cells were being genetically tested.

And it came back as 82% estrogen receptive. I had been on the hormone replacement drug Estrodiol for 3 years! For stupid hot flashes! I’ll always wonder if that caused my cancer. I am also BRCA 1 & 2 negative.

I had my last chemo in September of 2017. I started on the estrogen blocker Letrozol that month. I have been NED for two years at this point. I pray daily that I stay that way.

I know it’s hard to stay positive, we all go through the dark times, even when we’re NED, I know I do! It’s always there in my mind, I’m sure it always will be. I always tell people it’s ok to get down or negative. You need to feel all of your feelings if that makes sense? The key is to not allow yourself to stay there.

I do it like a hot shower, I go somewhere by myself, I scream, I cry, and let all of those thoughts out. And then I put my game face back on, and get back to living.

Please don’t give up. Keep fighting, this disease can be treated for years! They are making progress in research everyday!

And you are never alone.

My father used to tell me before he passed.

Everything has a Silver Lining, sometimes you just have to look a little harder or longer for it.

I pray that you fight hard to find your silver lining. Hugs teal sister. 🦋🙏

Jules

[Jules_PPC in reply to Jules_PPC]

Btw, I did not do Avastin.

[Quincy62 in reply to Jules_PPC]

Jules, Thank you for the kind words and support. I pray that you remain NED.🙏🙏 Your father sounded like a wise man. I will look for that Silver Lining❤

[mcd68]

Have heard excellent comments about Dr. Barry Boyd, Greenwich Hospital, Ct. 203-863- 4610

[Quincy62]

Thank You! ❤

[Imdunn]

Hi,

I now have a recurrence, and it is a left peritoneal tumor near my aorta. Surgery to remove it was not possible because of a second surgery to correct hernias with a big mesh implant. I, too, just had my 4th out of 6 Doxil/Carboplatin treatment, and I’ve been very ill with these treatments. It is so hard to be positive when it keeps coming back to bite you again.

My doctor has advised me to try to return to something I love to do to help keep my mind busy. I love to knit and spin my own yarn on a spinning wheel. So I’m am getting my wheel set up today to try it again. She said it would build up my stamina....even if I could only spin 10 minutes at a time. I am so weak right now, it takes all my effort just to get in the shower.

I can only wish healing thoughts, prayers, and open arms for cyber hugs to you. Write to me any time. I would love to hear how you are doing.