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Good and Bad News: Finished 6 rounds Chemo, Onc says c u in two months, feel Adrift! Start Megace? Waiting Game Panic, help!

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Dear Warriorettes,

Thank God CT clear,, Ca 125=4.6 down from 84 post surgery pre Chemo,, and Bloods Good-ish, very anaemic and low white count, but ok.

Now what??!!?? I'm in warrior mode after six months post Hyst and four rounds Carbo/taxol and two rounds carbo/Doxil, from Dx July 2010.

Prior to that no symptoms xcept constipation for two weeks, healthy, HA! then boom, six months Chemo, post Hysterectomy , debulking and removal of all 'female' parts, Stage IV Grade III Endometrial Adenocarcinoma, Mixed predominantly Clear Cell Type. Lymph nodes clear, but cancer in asecites, omentum and out of uterine wall.
(aged 65).

Last week Onc gave me script for Megace as I am Estrogen and Progesterin positive. He said come back in two months. I am frightened that I should be doing something, anything, besides waiting for recurrence which he said is usually by six months, max a year at my 'advanced Stage and Grade'.

I read this ListServ regularly and dont have what the majority has, Upsc. I feel I am worst case scenario that most of you 'in the know' and as a generally proactive person, feel so helpless, alone and set adrift.

Is there anyone out there who knows someone with my Dx? A month or two or more ahead of me?

Thanks in advance for your sage advice,

Sara Zipora

hopeful girl 1
Posts: 454
Joined: May 2010

Sara,

It sounds like you are doing well! Your counts are pretty good, your CA125 number is great, and your CT is clear.

Celebrate and feel joy that you have done well with you treatment.

It is scarey that after cancer treatment, we always have the fear that it will return, but perhaps it will not. Try not to look at it as you are jut waiting for it to recur-perhaps it will not. I am nervous too. My last chemo was November. I was uterine cancer stage 3C. Following treatment (6 chemos, and 25 radiations) my CA125 is 7, down from 300 post surgery. I am reading a very good book written by a doctor who is a two time brain cancer survivor which was recommended to me by a friend on these boards. It is called Anti Cancer A New Way Of Life.

I am now trying to make whatever healthy lifestyle changes I can-exercise, eat better, and trying to do things to destress and fine emotional peace whenever possible.
My oncologist will be checking me every 3 months.....he will do exam and CA125 test.

Hugs and healing thoughts to you!

susafina
Posts: 134
Joined: May 2010

HiSara,
I agree with Cindy. Now is the time to let yourself heal and get stronger. I am 7 months post treatment for Stage 3C also. It is hard at first you have been through so much and followed closely that when treatment ends you feel strange not having to see the docs or have blood drawnso frequently. I am followed about every 6 weeks for now, but I get worried that something will happen. It feels safe when under going treatment and scary about the future.
Try to do some fun things and take good care of yourself. We are all nervous but I am told that time helps. I know for sure one thing that if I want to do something I do it.
I am hoping that you will be dancing with NED for a very long time! We are all in this together.
SUE

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Thanks so much Hopeful and Sue, your posts brought tears to my eyes, I am trying to get out of 'but what if' and logic of 'but Doc said,
...' to healthier 'now is now and that's what counts' mode.
((hugs gratefully received))

Sara

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Thanks so much Hopeful and Sue, your posts brought tears to my eyes, I am trying to get out of 'but what if' and logic of 'but Doc said,
...' to healthier 'now is now and that's what counts' mode.
((hugs gratefully received))

Sara

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

I'm also stage 3C MMMT,which is a very aggressive cancer. I'm 19 months since last treatment and NED today. The best we can do after treatments as Cindy mentioned, build up our immune systems and minds to be more positive. We need all the strength we can get to keep on going and know we'll win.

I'm in a group therapy where I live (have been since prior chemo treatments) and the clinician who runs our group told us...one of the most important times we need support is right after treatments. Think of it this way, we've relied on the meds and all treatments and now doc tell us okay get back into the world and enjoy. Not quite that easy!

Time heals all, so be very patient with yourself and learn all that you can to keep your body healthy. There is a lot to learn and I can tell you I've learn so much from other gals on this site. Don't be timid, but jump in and ask...you'll be amazed what you'll learn.

We're here for you, so keep us posted!!!

Jan
((( hugs )))

HellieC's picture
HellieC
Posts: 481
Joined: Nov 2010

I have just finished 6 rounds of carbo/taxol for a second adenocarcinoma recurrence at the vaginal vault (and wrapped around colon, plus positive biopsies for microscopic cancer on bladder and peritoneum). I have my post chemo CT scan scheduled for 19th Feb and my oncologist appt on 9th March. I, too am wondering how I will feel if the scan is good and I am sent away to "get back to normal", albeit with regular clinic follow up!
But we must stay positive and try to think that it will not recur (or re-re-recur in my case) and that we can beat this into submission or at least long term NED. The anti cancer book mentioned above is a great mood lifter and full of useful and interesting lifestyle and diet advice, I would recommend it too.
By the way, is it usual to prescribe hormone treatment like megace even when there is NED? I live in the UK, and when I asked my oncologist if she would follow the chemo with hormonal treatment she seemed to indicate that she wouldn't and that she would "give me a break". Personally, I don't want a break if getting me on hormones might prevent a re-re-recurrence!
What is the international thinking on this - do any of you ladies know? Is it standard practice in the US to test the tumour for hormone receptors and prescribe the appropriate hormone therapy even when there is no evidence of disease?

Thanks
Helen

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

You should take some comfort that you are taking Megace as a maintenance drug. That should help to hold you in remission longer. PLEASE enjoy your remission! Allow yourself to believe in your returned good health and live with JOY! There is no advantage in preparing yourself for the other shoe to drop, for it will rob you of the full wonder and bliss that remission truly should be! If it comes back, deal with the heartbreak then. But take it from someone who has been there, you need to allow yourself to feel awash with the joy and contentment of this remission. Turn your face to the sun and wind and rain and laugh! LIVE FULL OUT! Don't WASTE this happy time with worry, please!

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Dear all,
Reading your posts I feel like my sense of being a 'lone player' is in the process of melting away. Instead I'm visualizing my cheering team rooting from the sidelines. It is a great feeling, I thank you all.
I have returned more fully to work, but with a 'compromise'. Well the Dx and Tx have clipped my Type A personality but I see it as a plus. I work a half a day, and go home to plan a walk or coffee with my husband, who has been great. We are also spending more time with the g.kids which is a joy.
I just have to connect with my feelings, the old mind body thing. I have to allow myself to believe what I say,and enjoy the moment and try not to PLAN but instead to, BE.

Not there yet, but thanks for the lighted signposts and you guys, the off side cheering team, the path isn't as lonely and scary as it was four days ago.

Just one question re letters that describe my Dx. I reread my pathology reports, first and second opinions. If I read it right I am not
MMMt, nor UPSC. I really know it doesn't change much, and I am grateful to God that I am here seven months after Dx, surgery and Chemo. But who am I in our UC Club?

Thank you all sod much, sorry for long post,
Sara

Here's what it says:

Adenocarcinoma, Endometriod Type, mixed, poorly differentiated with clear cell features. Secondary carcinoma Cul de SAC, Omentum, Adjacent to Right Tube and Ovary.
AJCC staging: pT3 b NO M1 ( FIGO IVB)
Architectural Grade III

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

Sara, Rejoice that first line chemo was effective-- clean CT and great ca125 are great indicators that this is so! Heal and embrace your NED status. The book recommended is well worth the read -- take from it what resonates with you, it could make a difference. Although you do not have UPSC, at your grade and stage you are not so different for the long term. I was 4B, grade 3 at diagnosis as well. That was three years ago and right now I am celebrating being NED and enjoying life every day. Just spent the day with my daughter and 5 month old grandson (born 2 months premature) and thrilled to be part of their lives. I started today recalling a favorite poem to encourage me to make the most of every day:

Days
Daughters of Time, the hypocritic Days,
Muffled and dumb like barefoot dervishes,
And marching single in an endless file,
Bring diadems and fagots in their hands.
...To each they offer gifts after his will,
Bread, kingdoms, stars, and sky that holds them all.
I, in my pleached garden, watched the pomp,
Forgot my morning wishes, hastily
Took a few herbs and apples, and the Day
Turned and departed silent. I, too late,
Under her solemn fillet, saw the scorn."
--Ralph Waldo Emerson

It is so easy to let days slip by not realizing how much each one has to offer... and yet they are what make up our lives.

Live for today ;-)
Annie

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Thank you Annieand Ca sisters so much for words and poem of appreciation.

Hopefully I will get on board with positive thinking and feeling. Today is better than yesterday and that of the day before.

Thanks,

Sara

Double Whammy's picture
Double Whammy
Posts: 2434
Joined: Jun 2010

Sara, we're all here to support you regardless of stage, type, or where we are in treatment. I absolutely hated it when my non-cancer friends would tell me to stop thinking about my cancers when I was in active treatment and feeling like crap. Of course, I'd think about all the what if's and negative stuff. Now that my treatments are over, they think it's over and done with. Not. I believe this is when you really need support.

But I'd come here or the breast cancer board and immediately there was always someone who understood or was having a similar experience. I hope you can find that here.

My treatments (for breast cancer) just ended in December. I'm now taking Arimidex and I consider that doing something. Megace is "doing something", too. I think it's difficult to "get on board with positive thinking and feeling" when it's about you. If you have a down day, allow yourself to have it. If they become everyday or consuming, there's drugs . . . .

Suzanne

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