Coping with ovarian & peritoneal cancer

@ford1929 Thank you for sharing how quickly all of this happened.

While my diagnosis was different than yours (endometroid adenocarcinoma) I felt healthy even up to the point of diagnosis. I was x-country skiing and snowshoeing in the winter months, working in the garden in early Spring, and doing my usual gym workouts. When I decided to tell a few people about my diagnosis one person said "Do you know what caused this?". My thought at the time was "how is this question helpful to me? I don't know and even if I did I don't want to dwell on that". I think many people just don't know what to say to us.

I'm relieved that your gynecologist got your tests going so very quickly and then the treatment started quickly. Skiing the first weekend of December to chemotherapy a few weeks later is a lot to adjust to.

Is your treatment at the University of Vermont Medical Center? I'm tagging @gynosaur42 who is an active member in this support group as I believe she may see providers at the UVM Medical Center.

In another post you mention that you walk every day and you are getting acupuncture that helps with nausea. Also that your pain is under control. Does acupuncture also help you with pain?

Hi, Ski Rossi. Welcome to our group! I was diagnosed with stage 3c, primary peritoneal carcinoma, HGSC, nearly two years ago. This is a journey, so be patient. If you had to pick a time to get this disease, this may be it! There are lots of new treatments in the works. Do not believe the statistics you read online. Many more options are available these days, even to those of us (like me) who have so far tested negative for all helpful genetic mutations. I received the same treatment as you (no Avastin), but I was given seven rounds of chemo prior to surgery and then three rounds after, to try to reduce the burden for surgery. I also had weekly treatment with the Taxol (instead of every 3 weeks), as I was told it might be easier to tolerate and would be just as effective. (Plus, for me they had to substitute Abraxane for the Taxol, as I was allergic to the binder in the Taxol, but the Taxol and Abraxane have the same active ingredients). We are all different. I had no real ill effects from chemo and never skipped a session. You will find lots of chemo tips online. Mine are to ice religiously to avoid neuropathy (I had three sets of Sussi mittens and footies I got off Amazon took in a cooler to chemo along with thin white gloves and socks to use as needed). I was told to eat a plant-based diet, which mostly kept my nausea at bay, and drank a lot of “green juice.” Eating oatmeal every day, taking 2-4 prunes, eating lots of fruit and taking sennokote as needed warded off constipation. And of course exercise helped with everything! You sound like you are physically fit, so that will go a long way in helping you fight this disease! This isn’t a path I would have chosen, but two years on I am doing well and feel blessed by the journey. I wish the same for you!

Thank you for the words of encouragement. And letting me know this is all normal.
I'm also 62 years old. And I will fight with all I got!!

@naturegirl5
You are correct, people just don't know what to say.
Yes my treatment is at UVM Medical Center of VT
Acupuncture definitely helps with nausea. Pain wise, tramadol is what really helps with no
side effects. I feel the acupuncture is just good for overall health
It got me through menopause, not even one night sweat, very few hot flashes.

It all happens so quickly. Like you, I was diagnosed and then started chemo almost immediately. I needed 4 rounds of chemo, then surgery, then 3 rounds of chemo after. I was only 42 when I was diagnosed, and shocked, because I had had my ovaries and uterus removed 4 years earlier after being diagnosed with Lynch Syndrome (no cancer, but hereditary cancer syndrome). Peritoneal cancer can happen to any of us, and there’s almost never any sign until it is stage 3 or 4.

A friend bought me several pairs of really pretty, soft, comfy pajamas that I lived in during chemo. I had flowers in my house constantly for the first 4 or 5 months. After years of trying to eat well, I let myself eat anything that I wanted, if and when anything sounded good. I was lucky and didn’t have any nausea. I took a lot of baths and listened to classical music. I had a good therapist. I walked whenever I could. I tried to eliminate the “noise” from my life and kept my circle pretty small. About once a month, we would go away for a night or weekend so I could have a change of scenery.

Do you have a port? I didn’t have time to get one before my first chemo but got one before my second round and it made the infusions a lot easier. I also got a second opinion from MD Anderson in Houston as soon as I was well enough to travel (I live in Phoenix and knew I wouldn’t go there for my actual treatment, but I think it’s known as the best hospital for peritoneal cancer.) Having that gave me a lot of peace of mind. Do you have a palliative care doctor? They help in managing the symptoms much more than my oncologist did.

You’re going to get through this. We are all rooting for you. < 3

Glad to hear you are a fighter! I second korinja’s advice to get a second opinion at one of the leading cancer centers like MD Anderson. I did my chemo at Mayo Jacksonville, but ultimately opted for surgery and further treatment at MD Anderson, given their experience and expertise. It meant periodic traveling (and a stay in Houston for the surgery), but that relationship also gave me options when the initial chemo and surgery was over that you may not find at your local hospital. I did not want to sit back and wait for this to reoccur, so I have opted for a more aggressive treatment plan. For now it has worked. There are lots of really great hospitals in your area. You might consider talking to them now

@ford1929 @ford1929 I'd never thought about getting acupuncture for menopause and certainly had the night sweats and hot flashes during the day. Other members here in our support group have shared that acupuncture helped them with nausea.

I know the UVM Medical Center well. I lived in Burlington in the 1990's off of Colchester Avenue and within walking distance of the medical center. I had good care there. I expect that the medical college and medical center has greatly changed and expanded since then. Anyway, it's great that you live close enough to make these trips for chemotherapy.

Is there someone who supports you on these trips to Burlington and at home?

@ford1929 I had no symptoms at all. My cancer was found by accident when I developed appendicitis. My tumor was already 7.5 cm and I had no clue. I am now close to two and a half years since it was discovered. It has been a journey and will continue to be one. One thing I have learned is that it really helps to hear from others, but this cancer is unique to each individual. I will pray for you as you travel through your own journey.💜🙏🏽

@naturegirl5
Yes. My husband is with me for all my appts. He is my greatest supporter
Also, my son and his GF have been so helpful.
So what I haven't shared with everyone is my husband (@1929ford) was diagnosed with
Prostate cancer 3 yrs ago. So, some of this is not new to us.
UVM is an amazing hospital, so many expansions, especially to cancer center.

@juliea55 Hi Juliea55,
Would you mind sharing what your more aggressive treatment is? And how MDAnderson is different from Mayo Jacksonville?