Need someone to tell me to stop

ptharp,

I am exactly at the same place you are. Stage 3c, and am starting chemo in 2 weeks. We are not defined by what research says. We will fight this terrible disease, and there is more research done. We need to be voices for oarian cancer and the need for more studies. Get support from family and friends. We can beat this thing.Have courage.

laverdiere said:

ptharp,
 
I am exactly at the

ptharp,

 

I am exactly at the same place you are. Stage 3c, and am starting chemo in 2 weeks. We are not defined by what research says. We will fight this terrible disease, and there is more research done. We need to be voices for oarian cancer and the need for more studies. Get support from family and friends. We can beat this thing.Have courage.

this is why I have so much faith in my naturopath.  The statistics you are reading are based on patients who complete their chemo and follow their doctor's advice about what to do after chemo....nothing.  They don't recommend anything about changing your diet and lifestyle to support a healthy body and a stong immune system, that will prevent a recurrance.  I've been following my ND's plan since just before completing chemo and I've been NED for almost 3 years, with a current CA-125 of 3.  My surgeon said I had less than a year after he completed my suboptimal surgery.  Talk about a dismal statistic.  It's not easy, it requires that you change the way you live, but it's a heck of a lot easier than having active cancer and enduring chemo.  I know when I share this information, it typically falls on deaf ears.  But I wish I could share the shift that happens when a new patient comes to see my ND.  They go from a place of fear and hopelessness, to one of promise, hope and health.  ptharp, I know you are on Inspire.  Read the thread about the Durango retreat.  You'll see the changes these women have already experienced, in less than a week.

kikz said:

You are certainly not the only one

who does it.  It is hard to remain upbeat and not worry with this disease.  Even when things are going good, a person worries it won't last.  It takes a toll.  I think most of us do a great job of handling it. 

I have been in a bit of a funk since my numbers began to rise again in November.  I had such hope that my medication would continue to work but it didn't.  I started my new drug and still have a sense of forboding I can't shake.  I am okay for the most part but I can't seem to handle much more without getting a bit anxious.  March 16th will be the third anniversary of my diagnosis and I guess having this cloud over my head for that long is getting to me a bit.  

So what you are feeling is perfectly natural.  I am glad you came hear for support.  I don't know what I would do without this board.

By the way, I look at statistics once in a while though I know I shouldn't.  I guess I am hoping the numbers will magically change. 

 

Karen

I know it is difficult to try and stay upbeat - impossible to be upbeat constantly - but so important that we are as positive and stress free as we can be.  

I took a downwards turn in the latter part of last year when my remission after initial chemos was only two months (I had convinced myself I was going to be cured, well at least a 2-3 year remission!) and next line of chemo (caelyx/doxil) didn't work and had awful side effects but my third chemo (gemzar) is now going well for me.  I have had two cycles and two 25 percent drops in CA125 now down from 425 to 223.    I also took the decision that I had to be proactive about my body and my disease (PPC) and am now seeing a naturopath who works with other cancer patients (particularly ovarian) and can't tell you how much better I am feeling and doing.   I am changing my diet and having supplements that she is recommending - not masses of stuff but rather then me self diagnosing before and taking potluck and buying this and that I am having what she believes I need to support my immune system.   Stress and worry is also not good for your immune system so please try and focus on the positives - your loving family and friends and each beautiful day that we do have so you can get through these dark days.   Know that we are here to help and support you too.  

I found the thread on Inspire on the Durango retreat "inspiring" and always enjoy Tethys' posts and find her "inspiring".   If I lived in the USA I would be visiting Durango but instead am searching out and finding help here in Australia.

Sending you hugs and support from downunder.

Julie 

ptharp said:

What does a Naturopath do? 

What does a Naturopath do?  Is it some kind of doctor?  I am interested in looking into this. I have already been looking at differnt kinds of diets and exercise plans to start.

From the website for the American Association for Naturopathic Physicians:

Naturopathic physicians combine the wisdom of nature with the rigors of modern science. Steeped in traditional healing methods, principles and practices, naturopathic medicine focuses on holistic, proactive prevention and comprehensive diagnosis and treatment. By using protocols that minimize the risk of harm, naturopathic physicians help facilitate the body’s inherent ability to restore and maintain optimal health. It is the naturopathic physician’s role to identify and remove barriers to good health by helping to create a healing internal and external environment.

They use methods that do not harm to treat conditions at their cause, instead of just symptoms.  They support patients going through conventional treatment in order to reduce negative side effects.  And they work to help the patient maintain a healthy body to avoid diseases and recurrance.  If the body is healthy, it fights disease on its own in the most effective way.

 I had my sixth round of carb taxol last mon and have spent the last few days feeling horrible coupled with a very negative frame of mind. Then I decided to copy and paste on my I Pad the postings made by various ladies (different group to this one) which demonstrated how statistics can often not paint the true picture. I will explain further: my OVCA is carcinosarcoma which is one of the most aggressive and rare ones. I am at an advanced stage although I have not had any vital organs affected thus far. I am advanced because my spleen was cancerous thereby it had spread. Anyway the stats for my type of cancer is pretty dire with 0% to 10% in avanced stages making it to five years. So according to the stats most people at that stage die within 1 to 2 years. Recurrence guaranteed within the first two years. So, going back to the the real life stories, as opposed to the stats: i managed to copy and paste loads of examples of ladies who have managed to survive and are still surviving beyond what the statistics predicted for them. Indeed, many of them without a recurrence. It might defy logic, science, what the experts say etc but it is happening here and now. So dont get fixated on the stats because they are based on averages, skewed age groups and samples and very often mask the 'outliers' (ie for those of you who remember math from school, these are the figures that sit outside the Bell Curve). Obviuosly not everyone can be an outlier statistics but someone has to be, right?

Big hugs

J xxx

I just joined and have never posted here before.  Decided this is not a bad place to start.  

I was diagnosed with Stage 3C epithelial ovarian cancer in July of 2007.  5 years and 6 months later I am still alive AND kicking!  

Like some of you, when I was first diagnosed I was hysterical and began to search the internet and of course read all the statistics and many of the horror stories.  Not very encouraging to say the least.  

The first - and only time  I mentioned some stats to my doctor he gave me a rather stern fatherly look and his nurse simply said "Oh we don't discuss statistics in this office."  It was the best thing they could have said to me and I never brought stats up again - and to their word neither have they.  Do I still look at the internet - yes.  Do I still wonder / worry some (ok a lot) yes.  But I decided my case is my case and (sorry for being blunt here) just because a bunch of other women died quickly from this didn't mean I was going too!  After all there was the other side of those stats.  So I set out educating myself with mainstream valid medical sites such as this one, national ovarian cancer coalition, MD Anderson etc. to learn more about what I was facing. Think of it as knowledge = power.   

As far as remission - I to was worried and felt certain it would come back quickly.  

A brief history - after major surgery (that included removing nearly all of my nonessential organs and part of my essential ones!), over 2 weeks in the hospital, a horrible infection and then 11 months of chemo. I was done.  I waited.  And I waited.  And I waited.  6 months turned into 1 year and 1 year turned into 2.  I became more relaxed and got quite comfortable and made sure I enjoyed my time - but all the time keeping myself prepared.  I lived my life but self preservation made me always be aware that I was living on borrowed time - be it 6 months or 6 years or more.  And I never had to go any farther for a reminder than to put my hand on my chest and feel my port that my doctor chose to leave in to know this was most likely not finished. But I DID NOT let the fear rule my life.  It is like my sister (10 year breast cancer survivor) says, "We're all going to die of something.  Some of us just have more information than others."

And finally, after my numbers had been creeping up for several months, in September of 2011 I did 6 more months of Carbo/Taxol. That bought me 6 months and this month I had my first Doxil treatment.   

Like you I never dreamed I would make it that long before my first reoccurence.  But I did. 

I wake up every day with the goal of doing all the "normal" things I would do anyway.  Some days I feel like more and some less.  I have had a lot of pitty parties and crying jags.  And I will have more.  And you know what?  A good cry every now and then is OK.  

Part of what helps me get out of bed everyday is I want to set a good example and be strong for those around me.  I try to think and act externally rather than internally.  The best compliment I ever received (not just cancer related but EVER) was from a coworker early on in my first 11 months of chemo.  She said:

"You know I was one of those people who used to be so scared that I would get cancer.  After watching you go through it I am not so scared any more. Now I know I can do it."  

I have other stories similar to that one and I hope I have impacted other people with and without cancer in a similar way.  That is one of the big things that helps me stay strong and put my best foot forward as often as I can.

However unfair and cruel it feels we all got dealt a bad hand. No one was prepared emotionally for the cancer diagnosis, side effects of treatment and menopause, and living under "the Sword of Damocles" of recurrence. We all read grim stats and graphic descriptions of what awaits at late stage. However you sugar coat it, ovarian cancer reality blows.

But we have a secret weapon – we are women. Call it natural selection or intelligent design, women were engineered to sacrifice, to withstand the pain of labor and forget about it, to bear and care for children, to nurse sick back to health, to land a shoulder to our men to cry on, to fall down and get up against all odds. Our ultimate tensile strength is a thousand times higher than what our past lives ever required of us. We bend but not break.

There is no wrong way to survive: faith, meditation, family and friends, healthy lifestyle, conventional or alternative medicine, support groups, an occasional crying, psychological help or my personal favorite just living your life one day at a time and doing crazy things that make you happy.

Some way, some how
We're gonna make it. We're gonna make it.

ptharp said:

Thanks for all your comments.

Thanks for all your comments. I have not been on in a while becasue i am still at that stage where I get freaked out when I hear of someone getting a reoccurance or worse. I have been seeing a therapist and I think it helps. I am hoping I will be that 30% that do not reoccure or only once. There is a woman, Helen on one of the other sites that I visit that was diagnosed in 1987 and then had one reoccurance in 1992. Whe has been cancer free ever since and she had Stage 3C. I met another woman a few weeks ago who has been cancer free from Stage 3c for 27 years. 

One of my problems is that not only am I going through treatment and this scary diagnosis is that just before I got sick I was planning on leaving my husband. I hope this is not too much information. When this happend to me my plans had to change. At first he was good and seemed like he was there for me. Now he is not as supportive and I see the old personality and behaviors coming out that I do not like. I believe my husband has a Narcistic Personality Disorder. ARE THERE ANY GALS OUT THERE GOING THROUGH THIS AS A SINGLE?  Sometimes I think it would be easier and less stressfull on me to worry about just me. Then I have to worry if I have a reoccurance who will take me to my treatments?

Sorry about all the personal information. I needed to vent about it.

 

 

without adding other problems to it.  I am sorry for your situation.  The man with whom I shared 27 years and a son died in 2007.  We had been through a very painful breakup and an equally painful attempt at reconcilliation.  For me that time of my life was even worse than dealing with cancer.  I was in such excruciating pain.  I loved him so much and yet I was so hurt by his cheating and lying and more cheating and lying,  I kept going back for more because I just wanted my life back to normal.  In the middle of all this turmoil he died of a sudden and very unexpected heart attack.  

I miss him to this day and was even crying last night when I watched a movie he and I had seen twice because we like it so much.  I can't talk to my family about my feelings because they don't understand how I could still love him when he treated me so badly.  Even our son does not want to talk about his dad whom he loved very much. 

Having said all that (talk about too much info) I know it would have been difficult going through treatment with him (I was diagnosed March 2010).  He could not handle it when I was ill even when it was just the flu.  I guess it's the man thing; they can't handle it if they can't fix it.  So even though I will always wish he was here with me, I think things would have been harder with him here.  He didn't like a lot of people around and when I was ill the house was frequently filled with my friends and family.  I am lucky that I have many people in my life to help me when I need them.  

I can't offer any words of wisdom to you but yes it is easier without the constant stress.  I hope you figure out what is best for you.  You are going through a tough time and it would be nice to only worry about yourself.

My best to you.

Karen