ovarian cancer - overwhelmed

You are fortunate to be in Long Beach. I just had a surgery and sent tumor samples to the Nagourney Cancer Institute there. I have mucinous ovarian cancer, and it is very hard to treat at advanced stages. It was in my lungs. Dr. Nagourney tested my tumor and told me what my cancer cells were sensitive to, so that now I can choose my first and subsequent chemotherapy more carefully. There are other places that do a similar thing, but I was impressed with their work and depth of knowledge. Nagourney is associated with Irvine.

City of Hope has at least one very interesting Clinical trial going on.

I personally get many many opinions.

To answer your other questions… My tumor was much larger than those, but it also broke on the way out. I think surgery first makes sense since you don’t even really know what you’re treating yet, if you have an excellent surgical team. Getting ex-vivo and genetic testing of the tumor following surgery would be smart before choosing treatment. At one time someone said the max size of bags they use to encapsulate tumors in surgery is 16cm. May not be true for you.

As far as the bloating, etc. I don’t know. I gave up gluten, sugar, dairy, and meat and I feel much much better and lost a lot of weight. I also did food sensitivity testing and gave up those foods, as chronic Inflammation is the enemy. You could try miralax, that is safe to take every day.

Wishing you all the best.

Cobo, from what I know (I am a visitor from the Uterine page) that sounds typical. As you probably have found out, Ovarian is a tough one. I would suggest you ask about genetic testing to see if she has any biomarkers that are responding to the immuenotherapies out there.

Your words of "frazzled and disoriented" touch my heart. You and your wife are in my prayers. That may not give you the help you were looking for but I am glad you shared with us. ❤️

Hi. I was diagnosed with stage 4 ovarian in March this year. Last chemo was September 2023. Beware of the constipation so get ahead of it by setting up a schedule for Miralax and Colase. Ask the nurse to give her a belly band that they have in the room, to support her stomach. It is a lifesaver and will allow her to start walking slowly the day after surgery. I slept in the recliner in the hospital room as it was more comfortable and allowed me to get up easier, with help, to get to the bathroom. At home, I also slept in a recliner for the first few days as it helped. Make her a large pot of vegetable or chicken broth, store some 32 ounce mason jars in the freezer and refrigerator as this will help as meals. Cobo, I am willing to help you as I believe God wants me to help other women as this was a great learning experience for me. I am 71 years of age and last Friday my PET scan said I had no active cancer. [Edited by CSN Support Team] My name is Nyoka. God bless!

Hello everyone--I'm Ruth, and I'm with you. I have (had?) Stage 111C Ovarian, with mets to most of my abdominal wall. I lost my spleen and appendix as well as the full hysterectomy, and some work on my diaphragm. This is a rough road we're all on--patients and caregivers.I can offer what I've learned. Regarding bloating and discomfort eating--try for TINY little meals. Nothing carbonated, obviously. Try to get fluids in--as much water as you can. It's important to get nutrition in, so try sipping cold Ensure or a similar product - that's what Sloan Kettering suggested to me, following surgery. Chew gum! This helps with constipation and nausea. Take lots of colase and if things aren't moving along, I take Miralax at night. Finally, I would recommend keeping a journal. This has been very helpful, as I tend to forget the little victories I've made along the way, and it's helpful to see this recovery moving forward. It's never a straight line upward--more like a mountain range, ups and downs. But moving in the right direction. In the weeks between Chemos, when I was feeling good, I cooked up batches of soup and stews and put these in the freezer so that we could still eat well even though I might not have energy to cook. Buy some loose-fitting long nightgowns - the kind that don't have a waist band! Just a long, loose shift. She'll love these. Clothes are uncomfortable for a few weeks following surgery, so these will be a joy to slip into. Finally... a tip that I needed: Washable pads for my bed. I was launched right back into menopause after the hysterectomy and am still dealing with drenching night sweats. These washable pads fit nicely on my side of the bed, I change them in the middle of the night. works like a charm. I hope there's something useful in here for you. Believe it or not.... you will emerge on the other side. You will. I'm sending you oceans of positive energy--it helps! You'll find strength you never knew you had. It will be OK. Just focus on here and now. And come back here often. We're all here to help - here's my hand!!

Richey44 - You're both probably still reeling with the shock of it all. I'm a good seven months into this journey and still a bit numb from it all. She's got the surgery behind her - that's huge. The chemo is no cake walk, but I'll say this: it works. It WORKS. Just start watching her CA-125 numbers plummet, even after the first one. That is so very encouraging! A couple of things to consider: She may need a walker - I did. I still use it for the first few days post chemo, as I'm unsteady on my feet. It helps enormously, and while I was bummed to have to get a walker at my young (ish) age I've been grateful to have it. By the 4th day post chemo, it goes back in the closet. Not everyone has pain from chemo but I did--absolutely no nausea, which I feared more than anything - but pretty significant pain. I am not one to suffer--so I use the heavy duty pain meds liberally. Just keep lots of Miralax close by, as narcotics tend to shut down the bowels. I hope I'm not scaring you with any of this - just want to share what I've learned (for me). Next week is my last chemo - then I'm officially in remission. Between the chemo and the surgery, my cancer appears to be gone. I'm hoping for a long and uneventful remission. Sending you and your wife much positive energy. AND OH!! Almost forgot---you MUST go online to Uniteforher.com!! This is a nationwide non-profit that provides FREE counseling, therapy, acupuncture, massage - all kinds of things - to anyone who has breast or ovarian cancer!! I just found out about this today, and am signing up.

Richey44 - Believe it or not... you two are going to get through this. I know it's overwhelming, and scary- -and absolutely life changing... but somehow, SOMEHOW... you both will discover strength you didn't know you had. Cause you have to - there's no choice here. She's lucky to have you by her side. Love really shows itself in a caregiver role. Keep coming back to this site--we're all here to support each other. What's your wife's name? Ruth

Hi Cobo,

I hope that your wife is doing better now. How's her Chemo going? Are they ready to operate? I suspect that she will feel a lot better after the surgery and her recovery period. It certainly strains your body having huge tumors in the abdomen and also squeezes on other organs. The Chemo will hopefully have shrunk them ready for the operation. She is very lucky to have you as her strong advocate, seeking out information and researching ways to help her.

Best wishes,

Ingrid

YAY - thank you jdjacobs for that uplifting story! LOVE IT!! Thanks for posting. Love that you're doing great, and hope the same for me. And yes, three cheers to the spouses!! You guys have a hard job, too, absolutely. This disease impacts hijacks both of your lives, hugely. Stay strong, everyone!