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new to this board....stage IV ovarian

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

hello to everyone...i found this board and take great comfort in many of the posts....i tried to find a match for my stage IV in two support groups and was told there was no one! that was pretty discouraging. i was diagnosed 13 months ago ... i was having trouble breathing and my pcp thought i had asthma so he kept prescribing inhalers which obviously did nothing. he finally sent me to the emergency room where a chest xray showed both lungs full of fluid...i had 3 ltrs drained from one and have 6 hrs of surgery a week later...went thru 6 rounds of chemo. needless to say, it was a terrible year. my ca125 is creeping up again//120 now and the catscan is showing spots on my lungs, so my onc has me on tamoxifen to try to stabilize the ca125. to look at me, you would never guess there's something that terrible going on inside...i always thought people with cancer were bedridden just waiting for the end. that is totally not the case. i travel, work, play with my grandson and am very active socially. it's not the sorority i would choose to join, but we are all in this together. we must all stay positive and try to enjoy every day we are given. my prayers go out to each and every one of you that is affected with this insidious disease.

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

I am stage for and for three months my doctor and urgent care thouht it was something eles and kept throughing pills at it until I finally went to ER and found out I have overarian cancer. I also had fluid on both lungs about a litter each. Went to the ER on June 4th and surgery on Just 21st all of this happen this year. They could not put off surgery or chemo because my lungs kept filling up I had them drianed I believe a total of three times. I am glad you found this site and yes none of us chose to join this club but here we are just loving and supporting each other.

Anne

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

good luck to you anne....it's really scary when you know you have fluid in your lungs....i had to have a semi permanent tube put in my right lung and my husband (god bless him!) would drain me every 2 or 3 days! he compared it to bleeding the brakes on the car....gotta keep a sense of humor, right?! after 2 months the chemo started to work they were able to pull the tube ..i guess that's one of my big fears is having to go thru all of that again. i just have to take it one day at a time and enjoy every minute that i feel well.
take care....karen

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

No, not one we would have chosen, but as you say we're in this together. I'm so glad to hear that you can be so active, feel well and enjoying life.
welcome, welcome Maria

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

thank you maria.....good luck to you....i noticed that you were on doxil....in july when the spots showed up on my lungs my oncologist thought we would have to start immediately on chemo again, and he was going to try doxil...how were the side effects for you? i tolerated the carbo/taxol fairly well. right now the lung spots haven't changed in size so my onc has me on tamoxifen. i like to feel proactive and hope this course of treatment is the correct one....if it were up to me i think i'd dive right into the chemo again....but i'm trying to trust that i'm doing the right thing. i think that's one of the hardest things for me is hoping i'm doing the right thing. should i be going for a second opinion?? should i try to join a clinical trial?? these are things i think about every day. i have a lot of confidence in my doctors but do they have access to the "latest" drugs? i hear about gemzar, tarceva avastin and farletuzumab just to name a few. i guess recurrence is kind of a "gray" area and there is no "standard" treatment.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

Hi Karen... I'm off to my gemzar infusion this AM, but will write you more later on doxil, etc.
(((HUGS))) Maria

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

I find that what usually happens is that the ONCs try different proticals of drugs to see what combos work best for each patient. I was on doxil and it wasn't my magic bullet, but it could be yours! Doxil is one of those drugs where you have to follow the instructions for aftercare precisely. Have you read past posts where we discussed icing, preventing mouth and skin problems, etc? If you can't find those, I'd be happy to pull out my old info and go into further detail.
(((HUGS))) Maria

Susan53's picture
Susan53
Posts: 177
Joined: Jun 2011

If you are thrown into a club at leest it is one where everyone seems to understand what you are going though. You will get a lot of support with this group of sisters. I also feel very good now that treatment is over. I do try to stay positive about life but it is very hard to keep your mind from wondering places you don't want it to go. Once you are dx. with cancer you are never free of the worry . Even when they say you are NED you have a hard time letting down the armor that you had during your battle with the cancer during all the treatments. I wish you the best with your decisions that you choose. Hugs Sharon

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Karen

Thanks for sharing your story. Are you on an anti-inflammatory diet? That may help keep your spots stable in your lungs. I've got stable cancer despite a rising CA-125 so I know how you feel. I'm gonna take off for a clinic in Mexico soon. I want to see how I respond to something different sine I'm not in an urgent situation at the moment.

(((hugs)))

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

hi... i am not on an anti-inflammatory diet but i will definitely look into it....i try to eat well .. lots of fruits and veggies. i did go to a very well respected holistic pharmacist who put me on about 10 different herbal pills to boost my immune system. he made a lot of sense to me, but my oncologist did everything but say he was a quack...he said to go spend that money on a great meal at a restaurant! i am now taking tamoxifen and under the medications warning it cautions that herbal supplements may interact with this medication so i've stopped taking them. i will be very interested to hear about the clinic in mexico....best of luck to you!

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Karen,
You might want to find a good integrative doctor or nurse practitioner or naturopath who could tell you if the supplements you are taking will interfere with your treatment. My experience with oncologists in general is that they do not believe in anything outside of surgery, chemo, radiation, and prescription drugs. Yet the statistics show that an integrative approach is beneficial. I'm not familiar with the indications for tamoxifin, but if the warning is a general warning about herbal supplements and is not specific about which supplements may interact, I wouldn't stop looking into it. Overall, the doctors working in the cancer world will try to discourage use of supplements, but there is definitely room for them during treatment.

kayandok
Posts: 1223
Joined: Jun 2008

to the board, Karen! I love you positive attitude! Glad to hear you are enjoying your life.

I was dx OvCa 3C 4 1/2 years ago and had a lot of treatments since then. Everyone is always shocked if they find out, as I just don't look "sick" either. I try to stay positive too, but the JOY tends to seep out if I have too many side effects or sypmtoms. It is a challenge finding the balance in all this, at times.

Hugs,
Kathleen

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

kathleen....you are so right about finding that balance....i am generally a super positive person....i can find the silver lining in the darkest cloud. but when i get a bad report from the doc....it sends me into a real funk. i start to really feel sorry for myself, but after a day or two, i dust myself off and go with the positive thinking again. i am sorry we are all going thru something this terrible. i pray every night for a cure for us all. xo

jbeans888's picture
jbeans888
Posts: 313
Joined: Mar 2011

I know exactly what you mean. I am stage 3C, NED, but nobody would guess that I was sick. I guess thats why it's important to listen to ones own body. Welcome to the board it has been my life line. We are blessed it exists for all of us.

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

i am so sorry that you are going thru this, especially at 31. i have a 25 year old daughter that i'm scared for. she has already had a baseline abdominal ultrasound and i told her to have her kids (not married yet, though!) and get rid of those ovaries! not only do i have ovarian, but her grandmother on her dad's side died of it 2 yrs ago...i will keep you and all the girls on this board in my prayers.

Cafewoman53's picture
Cafewoman53
Posts: 738
Joined: Jul 2010

This board is a great place for information and it is such a sisterhood where you can share your good news, your bad news and any feelings at all.
I was diagnosed IIIc in June of 2010 and have been in treatment up until June of this year, I have not been ned yet but I feel good and I am enjoying my life. So far I have been able to take any bad news, process it and then put it in the back of my mind and get back to enjoying and living my life.It is alot easier with the support of the women here.
Glad to meet you/
Colleen

kikz's picture
kikz
Posts: 1281
Joined: Jun 2010

from another Karen. This is a great place to find support and information. I am proud to count myself as a teal sister. Keep up the positive attitude, it makes all the difference. I refuse to let cancer take more from me than it already has. I may have lost organs, blood and precious time feeling ill but I will not let it have my spirit. As you can see I share this point of view with a lot of the other ladies.

Karen

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

thank you karen....it's very comforting to "talk" with others who are experiencing the same emotions....i try to stay very positive but some days it's really hard....stage IV is very scary. let's hope and pray for a cure for all these courageous women.

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

thanks colleen.....best of luck to you...i will keep you in my prayers.

carolyn45's picture
carolyn45
Posts: 100
Joined: Apr 2011

Karen, your attitude can make all the difference. I love that you're living your life and loving it despite creeping numbers upwards and maybe occasional bouts of fear that assail most of us. We'll all be praying that the tamoxifen does its magic and that your full life continues on and on.

Beary
Posts: 9
Joined: Jul 2011

Hi Karen,
I had all the issues you had ..except ..just 1 lung drained..collapsed, now liquid in the lung, debre, scar tisses. My forth CA 125 went up as of yesterday to 111. Setting up scan ... I am postive most of the time...but for the last 2 months I have been beyond tired..... beyond. I have been on oxygen for 4 days, does help...debulking, chemo.
Can't believe it...My prayers are with you. YI this all started in June..2010..trouble breathing
XXOO,
Beary

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

beary....i am so sorry for what you are going thru...i just had my ca125 checked tues (every 2 wks) and it only rose 3 points to 122.8. i am on tamoxifen which i guess is working...but i am noticing that i get out of breath much more easily....just walking up the steps makes my heart pound. my next catscan isn't until dec ... hoping for the best for us all....i will keep you in my prayers.. xoxo karen

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