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NED unexpectedly !!!!!

evertheoptimist
Posts: 140
Joined: Jan 2011

Today, I saw my dr. for post chemo consultation. When he walked in and asked me how I was doing, I said "the rapture did not take place as predicted last Saturday, but I feel like I am facing my judgment day today". He said, well, your CT/PET scan is completely clean!

I did not expect this. I went in there bracing myself for a discussion regarding further treatment options. My diagnosis was the most advanced kind (UPSC 4B), and my surgery outcome was sub optimal in that a 5.3x3.6 cm tumor was deemed inoperable and left behind among other sub 1 cm smaller cancer nodules. This tumor did not shrink on the scan I took at a half way point during chemo. Furthermore, my cancer, at the time of diagnosis was extensively metastatic: spread all over the abdominal & pelvic area.

Given all this, I knew odds were not in my favor that I would go into remission after a standard 6 cycles (18 weeks) of front line chemo therapy.

So, this combined with the fact that I breezed through 18 weekly chemo infusion sessions without any side effects (other than the neutrophilis tanking and hair falling out) tells me that I am already beating the odds big time.

I know the odds for recurrence within a few years are near 100% for my diagnosis, but I hope I can beat these too - or at least stay in long remission at a time.

I told my doc "you never looked so handsome as you do today!", and he had a big laugh (this guy never smiles or laughs, so this is a major accomplishment on my part!) - in reality, he actually looks like a grumpy frog. But, he is a very competent doctor.

Meanwhile, I checked the results of my blood work done last week. It looks like my bone marrow is recovering nicely also: 2 and half weeks after the last chemo infusion, my neutrophilis is back to normal (low end of the normal though - I hope it continues to go up a bit more).

Next step: I will contact a couple of places where they are conducting vaccine trial for women who recently went into remission.

By the way, I don't know what allowed me to beat the odds up to this point. However, here are few things I did. Whether they helped in achieving remission or not is impossible to tell (it's not a controlled experiment after all), but I do believe it kept my body healthy, so to the degree that it strengthened my body over all, it probably helped to a certain extent.

*** diet: I became rather fanatic about good nutrition. No meat. Fish occasionally. Organic egg whites for protein. 12 servings of fruits and vegetables all known for their cancer fighting attributes. No diary product. No animal fat. No bleached white floor or white rice. Black rice every day. Flax seed oil, fish oil, curcumin daily. Lot's of garlic and ginger. Minimal sugar (maybe a table spoon of ice cream a day).

*** exercise: on the average daily 75 minutes of aerobics

*** psychology: right from the beginning, I almost instinctively went into the mode of opening up my social circle. Started to write essays about my "journey" and shared with close friends and relatives. This has been enormously therapeutic for me. I was very optimistic about my odds from the beginning in spite of grim published statistics. I felt that I could turn cancer into a net positive experience for me, and it turned out to be exactly that. All in all, I gained more than I lost.

So, time will tell how I will be doing going forward, but I intend to keep up all I have done so far as described above. Who knows, I may recurr in a short while. Well, if it happens, I will deal with it with the same resolve and positive outlook I had when I first got DX'ed with the worst possible diagnosis I could imagine.

Ro10's picture
Ro10
Posts: 1481
Joined: Jan 2009

You have always had such a positive attitude, and have done so many positive changes in your life with diet, exercise and journaling. What a great job you have done, and have gotten fantastic results. May you continue your journey with such wonderful results. I am proud of your accomplishments. In peace and caring.

nempark
Posts: 596
Joined: Apr 2010

Well written: Remarkable results and a wonderful attitude. Let's put aside the word "recurrence" for a long time or forever. Your sis June.

HellieC's picture
HellieC
Posts: 459
Joined: Nov 2010

I am so pleased for you. What an amazing outcome. As you said, the odds were not on your side at the start, but you have beaten them into the ground. Long may you dance with NED - you must be feeling wonderful.
Kindest thoughts
Helen

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am so glad to read this post. Happy for you!!!

Susanna23
Posts: 66
Joined: Dec 2010

Great post - so inspiring! Many many congratulations and thanks so much for sharing your practical tips. I am sure they made a huge contribution to your recovery.
Very best wishes
Susan

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Congratulations on your excellent report! You have played a very active role in being NED and you should be very pleased with your efforts....diet, exercise, openness and a VERY opimistic attitude!

May you remain healthy and happy!

Karen

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

So happy for you!! Turn your face to the sun and rain and wind and allow yourself to feel the bliss of renewed hope and joy!

evertheoptimist
Posts: 140
Joined: Jan 2011

I think there was an element of luck also. My cancer turned out to be sensitive to taxol/carbo. It could have easily been a pretty scary scenario if mine was not responding well to this combo.

So, I cannot take all the credit for getting this result.

That said, I believed, from early on, even before I got my scan results today, that this cancer, contrary to the popular belief, can be beaten without relying on miraculous healing or divine intervention. There are certain things that are under our control, and I plan to do everything within my power to up my odds.

Who knows, even with all this my time may come soon, but at least, I will know that I did everything I could. that will be a gift for my husband and children, that is I did not give up "on them" - it's a reverse thing to say.... I am not afraid of "my death", but I know the devastation it will wreck on them, especially my husband. So, I intend to do everything I can so that my family will not be burdened by my untimely death that I did not do my best to prevent.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Fantastic news!!! You gave it your all and it worked - enjoy, enjoy the results.

Do I recall correctly that in addition to dose dense taxol and 3-wkly carbo, you also were on Avastin?

Thanks also for relating your own diet, exercise, and mental health treatment techniques. I do believe the multifocal approach is key to the success of our treatments. Not sure which area is of greatest importance but covering all bases is best route.

Again, congrats and may your NED state live long and prosper.

evertheoptimist
Posts: 140
Joined: Jan 2011

yes, I was on Avastin from cycle 2 through cycle 5 (they did not give me Avastin on my last cycle: I developed sinus infection and bloody nose due to a prolonged cold, and that was no no for Avastin)

I am a SciFi junkie! May you live long and prosper also!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Wonderful. May the force continue with you! Mary Ann

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You are a true fighter and knew that from day one when you told us you would fight. Well...it has paid off with NED...yeah!

I'm a firm believer in keeping our body and mind strong to keep the cancer at bay.

Keep up the great work and time will fly by with all good tests....

Enjoy life it's truly a blessing....
Jan

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I am so happy for you!

evertheoptimist
Posts: 140
Joined: Jan 2011

thanks everybody. I appreciate your words of encouragement.

Given where I started (pretty grim diagnosis and prognosis with a sub optimal surgery outcome), this tells me that our starting point does not necessarily mean our destiny. We all have our own journey to live. This is a work in progress.

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

I remember well your original posts and your optimistic outlook. I'm so happy for you. Keep up the good work! Did you oncologist seem surprised?

Suzanne

evertheoptimist
Posts: 140
Joined: Jan 2011

my oncologist is rather a taciturn, scary looking dude with poker face and not much of emotion showing, but I could sense that he was happy to be giving good news.

Whether he was surprised or not is hard to tell. One data point is, when I showed concern during the mid chemo consultation over the fact that the big tumor did not shrink, he said something to the effect that "you have no idea how well you are doing considering where you started..." He never showed his alarm over my diagnosis or initial condition before, and that was the only time he ever let on how serious he thought my condition was. So, it is probable that I did much better than he could comfortably project at the beginning.

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

It is my understanding that often they won't shrink, but there becomes a dead center surrounded by live cells, so even though the tumore appears to be the same, it's deadliness is greatly lessened.Ah? does that make sense?

Kaleena's picture
Kaleena
Posts: 1224
Joined: Nov 2009

Joy Joy Joy! I am soooo happy for you! Thanks for sharing this very uplifting news!

Kathy

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

agreement. Me too! I always felt just from your screen name alone that you had a good shot at things. I think one of the biggest things that saved me, was I just kept on thinking I don't think so in regard to letting this cancer get me. And then when I joined the group and found that I could help people, or at least try to, that just perked me up even more. It's been three years and four months since my UPSC diagnosis, and I am still kicking.

Not nearly as adamant as in the beginning of doing all the things you continue to do, but every day I get in some very good for me things.

Those two lymph nodes that in the beginning grew, stopped once I began finding out what cancer needed and then quit doing those things.

C'est la vie!!!!!

Kudos to you!!!!!

Lots of warm squishy hugs and thoughts

Lori_VA
Posts: 16
Joined: May 2011

Just curious, what things did you stop doing? Was it diet related? I'm going more to the anti-cancer diet.

Thanks!

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

I just responded to the wrong question.

This is what I stopped doing that I been doing the year or two prior to the cancer diagnosis.

I had read that brown rice was very good for you so I oodles of that with cheese, drank coffee, and ate ice cream, and could not excersice due to a heal fracture/crack. had almost a entire diet based on acidic foods and cancer just loves acid and drops dead in an alkaline environment. so I quit all that and started to eat grapes the first thing in the morning.
suggest you go to cancertutor.com and read and then look at the post I just put on you other thread.
I just read your prior post and was scratching my head trying to think of what to say to help. Couldn't really come up with anything.

However, I can certainly answer you question. I did some research and found that cancer loves all sugars, so except for concord grapes, I stopped eating sugars, carbs anything that could turn into a sugar in the body.

I lowered my protein intake.

I ate raw ginger and rubbed it on my skin in the area where the cancer was.

I did deep breathing frequently cause cancer thrives in an aneorobic(low oxygen state)
. You know I did not do this and don't know how to gain access to it, but what with the staus of your cancer a hyperbaric oxygen chamber might be something you could ask your doctor about or research on the internet.

Grew and ate wheatgrass.

There's a website cancertutor that has all kinds of things that people have tried.
The site's way different then when I first went there three years ago but here is the url to section on Stage lV--http://cancertutor.com/Other02/AdvIntro.html

I would focus on eathing raw foods, just put all the veggies you can in a good blender and drink what you can and eat the rest with a spoon.

I'm going to think and see what else I remember. I am going to think very, very fast.

oodles of green tea with lemon instead of water. let the tea brew for thirty minutes, add lemon at that point, do not use any sugar. aim for six to eight cups a day.

turmeric/pepper/olive oil is a potent cancer fighter. the girls can supply recipies

The very best of hope to you.

Claudia

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Just read your posting and I am so very happy for you!!!! When I read about your pokerface doctor I got a chuckle. I am so very very happy for you!!!! (((HUGS)))
Lori

sleem
Posts: 92
Joined: Feb 2010

You have fabulous attitude and I'm glad for your NED.I admire your committment to your diet. I will take inspiration from you.

evertheoptimist
Posts: 140
Joined: Jan 2011

I did not login for a while, and now I see there were new replies to this original thread.

thanks for your warm well wishes. It means a lot to me.

I just came back from a road trip with my college friend that I have known since we were at a middle school. We haven't see each other for over 8 years though we stayed in touch through email and phone calls. I flew to MN and then we had a road trip. She does not drive much, so I drove 12 hours a day for a few days. I love long distance driving, so this was a treat.

I am now in the process of applying to two vaccine trials for high risk women who are in their first remission. I was already accepted into one, and I will see whether I got into the other. If so, I will have to choose one of them - or I may decide to go on the Avastin maintenance plan: the ICON7 trial results were rather promising.

Meanwhile, I developed a very faint neuropathy on some of my finger tips a month after the last infusion after having breezed through the whole 18 weekly chemo infusion without any side effects other than low WBC and hair falling out. I learned later than it's not uncommon that the side effects will developer AFTER the treatment is over. Oy vey - I am not out of the woods as I thought. I did not take any supplements for neuropathy during the treatment since I did not have any, but yesterday, I ordered some L Glgutamine from INternet.

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Congratulations on your success! Just wanted to let you know that I used 300mg of alpha lipoid acid twice/day with food to resolve the neuropathy & ringing in the ears.

Keep dancing with Ned!

LQ

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