New here-from MT-Need all info

[irel]

I am new here. I live in a very rural area in Montana, in a very small town. I feel very isolated here and am looking for a place to share my experience and hear other's experiences. Also I feel there is a lot I don't know. Hard to get info here. Diagnosed 6 months ago. Major surgery and will complete chemo (4 1/2 months worth) in two weeks. Trying to create a transition plan. Open to all ideas. Ca-125 currently at 18. Is that good?

[Lind58]

Irel, what stage were you diagnosed? What was your ca-125 when you were diagnosed?

[irel in reply to Lind58]

I was diagnosed in stage 3. They didn't do a CA-125 until after my surgery. Spent 6 hours in the operating room. They did a complete hysterectomy and scrapped suspicious cells off of several organs and gave me an ileostomy. Very difficult recovery and spent 16 days in the hospital. Wasn't sure I was going to survive the surgery but did and now feeling like I may have a chance here. My oncologist said the surgeon did a lot of work for him. Before beginning my chemo my CA-125 was 70. I started chemo once a week with 18 sessions scheduled. By the 9th session it was down to 31 and has gone lower at every 3 week check to 18 now.

[Neona]

I live in the UK in Cornwall which is also very rural and isolated. I travel 300 miles to London for treatment every fortnight. I have clear cell ovarian cancer. I think there are more options to treat my type of cancer in the US. CA 125 of 18 is in the normal range. I believe it is the trend that matters rather than the number itself. So if it doubles or triples it could be a sign of recurrence although there are many other reasons, such ad infection, that can make CA125 go up. I used the internet and got as much information as possible and have found these forums wonderful.

[irel in reply to Neona]

Agree. Just found this forum and already it has been so helpful. I am lucky to get my chemo in my town and the oncologist comes here once a month or we do a telemed before I start me chemo session every week but I travel 150 miles one way to see my surgeon. We can have terrible roads in the winter. It is snowing heavily today so travel would be awful. Feel so lucky I don't have to make a long road trip every week.

[DocIt]

Welcome love. My name is Susie, I am living in Miami, originally from NY. My sister had stage IV ovarian cancer.

I am happy to meet you and here to be your friend.

[irel]

Thank you. My knowledge of ovarian cancer happen seven years ago when my best friend was diagnosed with ovarian cancer. She did not survive very long and I have to admit she is in my thoughts as I fight this. Very tough disease and I am giving it all I got. Hope it works.

[Shumwayl in reply to irel]

I also had a friend who died from ovarian cancer just 6 months before I was diagnosed. Sometimes I feel lucky and other times I feel like I could die like she did.

She is in my thoughts often. Our birthdays are coming up and I miss her.

[irel in reply to Shumwayl]

So important to stay strong. I am sure my friend wants me to do that. I miss her too. It is hard not to think of her when things get tough. I know now what she went through and really respect her for trying so hard. When she made the decision to stop treatment, I understood. Her last days were such a struggle. Hard to watch. Felt so helpless. Now I'm in same place. Right now, I feel like I can beat this. Very early in my journey. Have only been dealing with it for six months. Hope to continue making progress. Hope that for you, too.

[Archeveritas]

Welcome irel. Is your ostomy reversible? I also had a best friend who fought for five years. I love the country but felt blessed to be in the city when I needed so many services. Stay safe on those Montana roads and stay strong! They have developed so many drug alternatives today that our chances are increased!

[irel]

Yes, it can. Not sure when it will happen. Complete chemo in two week, see my oncologist surgeon who did the ileostomy a month after that. Have been so sedentary, don't feel strong enough for surgery right now. Starting PT this week to build up my strength and endurance. My dear friend didn't long, about a year and a half. That is my hope, that there are more things to throw at this terrible disease to make us winners. Best to you.

[GwenHP in reply to irel]

Dear irel. I know how your friend’s journey with this disease vacant makes it ever the more daunting. But I’ll share with you the words of wisdom my Dad gave to me shortly after being diagnosed. He reminded me that I’m a sample of one and statistics don’t apply to individuals. I was going to go into remission, be cured, or whatever independent of what a thousand cases show.

I had a friend that was diagnosed shortly after me and barely lasted 6 months. Yet I am here (as of this month) 14 years later after a stage 3C high grade serous diagnosis.

Why one woman lives and another one doesn’t is obviously something everyone wants to understand but so far it’s eluded the scientists as to why. So I take each day given to me as it comes. Everyday that the sun comes up and I get out of bed is a good day.

Best wishes - Gwen

[irel]

Thank you. This is great advice. Stay in the moment. I thank God every morning for a new day.

[Serengeti]

Dear Gwen

I am still trying to understand why some women live some don’t.i guess it’s hard to understand. But from what I read and from testimonies it’s the body ability to heal , support and as well the best treatment.

Best to all

Xx

Shafi