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Diane is NED!

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

After four doxil and avastin I am NED. I will stay on avastin for maintenance therapy. I hope to be able to enjoy more of the summer again. Just little bits of good news are such big good news for us! She is talking that we can go longer with this cancer with remissions and treatment with chemo. It is good news to me. I got a rash after fourth doxil but it was bearable. Don't give up hope if you recur!

Diane

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

Oh, Diane, I am SOOOOO happy for you. This isn't TINY great news; this is HUGE great news!! NED is as good as it gets! I am just THRILLED for you!! Turn your face to the sun and wind and spin around and laugh with the joy of it! Hope springs anew!

I honestly thought about starting a special thread JUST for us with recurrent endometrial cancer. I could tell by the underlying sadness in your posts that you are well aware of the prognosis once this beast returns and that you've been doing your best to work through it in your head and heart. You and me both, dear one, you and me both. And I know that all of us who have recurred worry that if we share our heartache and fears, we steal hope and add anxiety to those who are in their intial treatment protocols or in their first (and hopefully life-long!) remission. And so, we lose our Support Group to some degree just when we need it most, by our own choice. PLUS, every recurrence is so different, unlike the earlier diagnosis when our treatments were all so much the same. Your recurrence is very different from mine and from Frans, etc., and our treatments are all so different that we cannot help each other with shared experiences. That makes this all that much harder. Please know that I am here for you and that you can email me ANY time and get a response, ANY of you.

Enough on that. TODAY is not a day to discuss how we'll deal with dark days. TODAY is a day for you to celebrate setting aside Doxil and reclaiming a piece of your life!! DANCE!! LAUGH!! Life is good!

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

My chemo-oncologist is a proponent of single agent chemos given sequentially instead of the one-two punch of using more than one chemo at a time. I know that's not what you are doing and my husband was wanting me to take doxil and carboplatin for this latest chemo. But I think my oncologist will have me take doxil all by itself when the taxol stops working, and then carboplatin all by itself. His strategy is to stretch out the available drugs as long as he can. I also had to get all those blood transfusions and had 4 delays with my initial treatments of carbo/platin, so I think he's concerned about my bone marrow holding out and my blood counts staying good enough for me to safely take chemo. That's also why he is against maintenance chemo for me; my bone marrow needs those breaks when I can safely take them.

That shows how hard it is for us to have shared experiences to help each other after we recur. Our treatments now are all determined by what the strengths and weaknesses are in our bodies going in, with an eye for quality of life, and for keeping us battle-ready as long as possible for the war that will go on and on and on.

But still, Diane, I am VERY interested in your oncologist's rationale for the dual-simultaneous chemos and maintenance chemo. I don't take my oncologist's advice without questioning and I have an open mind about changing strategies! If I can find out if I'm HER2nue+, I'm going to fight to add Herceptin and to also take that as a maintenance drug since I know that is my best shot. So please share what your oncologist said about the maintenance chemo 'cause I am interested. Thanks!

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i actually don't think that's a bad idea, linda, so that those who are just starting out on their treatment journey can skip this thread, and those of us who have recurrences, or are concerned that they may ( like me), can read all the posts there and write what we wish without worrying about the effect of our words/thoughts on anyone not specifically wanting to read them. what do others think?????

in my case, as some of you may know, i have a slightly enlarged periaortic node which my chemo doctor thinks is probably cancer, my acupuncturist thinks is not cancer, and the head nurse at the oncology center thinks it's probably scar tissue! so, while i have no intuitive sense of what is there, i look at what's most likely, and certainly believe it could well be cancer. i did read on the ovarian cancer site that i inadvertently found myself on when looking up nodes and scar tissue, that cancer in the periaortic nodes tend to be "indolent" "lazy" cancer cells--who would have thought we'd be happy to hear something was indolent and lazy??? in any case, i'm not doing anything until my next ca 125 towards the end of august, hopefully, and even then, if i'm feeling as good then as i am now, may postpone it even then.

linda, i was interested to learn why your doctor/s decided not to remove the node in your arm pit? i wonder if they thought you didn't need to be put through more procedures when the chemo would get it???? or what???

i realize that all recurrences are different, so treatment for each will be different, but it's also been true that depending upon where we live, some of our initial treatment have also been different, though most of us started with a fairly radical surgery, then chemo of carbo/taxol--6 infusions. but some had different chemos, different frequencies and different length of time. and some of us had radiation--but different kinds, and some of us didn't. so, i do believe, however different our recurrences may be, we still have a lot to share with each other both about our individual treatments, and our fears, hopes, sadness and joys along the way. again, what do others think????

many hugs to all,

sisterhood,
maggie

hopeful girl 1
Posts: 454
Joined: May 2010

That is wonderful! I am so happy for you.
Peace and love.

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

I am so happy to hear this news. I agree with Linda's thoughts about recurrence, hope, and living with this disease, and our very real need for support.

I feel close to those on this journey - but closer to you who share the same experiences. I, too, am always here if you need to talk. I am so happy for you Diane - and this gives me hope that we can continue to enjoy life even with these bumps along the way.

Enjoy this beautiful summer and your family and activities that you love. You deserve it!! All the best, Mary Ann

shortmarge
Posts: 296
Joined: Nov 2008

Keep on dancing!

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

Oh, Diane....what happy news this is indeed! You have successfully manuevered this big curve in the road and you have WON!! Enjoy life and keep dancing!!

Karen

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

That is amazingly great news, Diane!! It gives hope to those who recur and a huge emotional boost to all of us - another sister dancing with NED!! That is the best news ever.

With love and joy,
Cecile

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I'm so happy for you Diane!! We're both on the floor dancing NED and I expect to make the best of the joyful time.....

Jan

Kaleena's picture
Kaleena
Posts: 2022
Joined: Nov 2009

Yes! I am sooooo happy for you, Diane. Keep smiling! We are celebrating with you!

Kathy

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

Happy for you!!! Hurray!!!

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

Diane, that is such great news! And you definitely give hope to those of us in treatment for recurrence. My gyn-onc makes me feel like he is just humoring me by treating as though it really will make no long term difference. I sure can't go along with that, so off to chemo I go.

Enjoy, enjoy! And it's summertime no less! Annie

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Yahoooo! Doing the Happy Dance!!!

Laurie

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I would really like to have a place for those of us with recurrances. I often felt I needed extra support but didn't want to discourage the gals who are just starting out. I also feel those of us who have recurred have a vantage point to help those starting out; we've been through it. Lord, have we been through it and can help!

Linda, My Doctor chose doxil because I have neuropathy in my hands and feet (I had treatment for breast cancer years ago and this adds to my neuropathy as chemo can be cumulative with time and side effects.) My neuropathy is MUCH better so gals don't give up on that either. She also added avastin which is not chemo but a monoclonal antibody that cuts off the blood supple to cancer. She wants me to stay preventively on avastin. I did not have external beam radiation so white count can do better for me. You are right, our decisions for chemo are individualized. I did not talk to my gyn Onc about why two drugs; she is young and has talked about other options for me too (I think as single agents, topotecan, and something else but I did not remember the rest.) The platinum drugs are the best thus far for our serous cancer. She is "saving" it for later. When I relapse she plans to use doxil again because I do so well on it. The taxanes are good but I get a reaction and can take them but they are very difficult for me.

My fingertips are very sore; I Probably should have iced them down more after chemo so some of that may be my fault. They will get better during this break.

Also, my Gyn Onc believes we can go alot longer on chemo then previously believed. Years.
She was very adament about that even though I relapsed early. She really sat down and talked about my thinking and time; she believes I have more time than I think I do. I need to change my thinking.

When I feel better I want to get back to the fund raising for research work. So glad one study got funded by the Gyn Onc Foudation. Haven't heard from the Gates foundation yet which I think is a good sign; I told them to read our blog site and that we would need help in distributing funds they have for research. They do have money set aside for rare diseae research. I am also going to write the NIH. I have written our sentators and congressmen. We need someone to testify in congress! You are so articulate Linda I think you would do very well.

When my fingers heal I am going to enjoy my break. I am still tied down to every three week chemo but my husband and I should be able to plan a little vacation.

Thank you for sharing with me, giving me support, and celebrating with me during this little lump of good news. I really believe only you courageous women understand how wonderful a remission is although it can be very short.

Diane

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

diane,

it is no small thing that you are now ned, and no one knows how long your remission will last, could go on and on and on.....and, while it's most wonderful for you, by implication, it's also good news for the rest of us, gives us hope even with recurrence. it was also good to hear what your gyn-onc said about years of life, so yes, sounds like you do need to change your thinking, as probably most of us here do as well. i was diagnosed a little over a year ago, and frankly didn't expect to be alive today, and i am, so no one, and i mean no one, can know just how long any of us will live, despite some pessimistic doctors, posts, statistics, etc.

enjoy this great news, diane, you deserve it.

best and sisterhood,
maggie

llight
Posts: 99
Joined: Feb 2010

Super good news! So happy for you!
llight

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Enjoy your dance with NED. It made me so happy to read you are dancing with NED.

When I was diagnosed my gyn/onocologist tole me this UPSC was not curable, but treatable. Like a chronic disease. I pray that your maintenance dose of Avastin will keep you NED for a very long time. Celebrate each day, and I hope you are feeling better soon. Hope you and your husband take that vacation. Enjoy. In peace and caring.

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

wonderful news.

I would like to thank you for your efforts on all of our behaves? for the work your are doing to raise funds for research. You are an inspiration.

Continue on both you achievement roads and make the whole world a better place.

In loving admiration,

Claudia

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