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Need encouragement and positive energy- numbers trending upward

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

Hi Ladies,

Saw gyn-onc doc today. My Ca125 is up again - now 69 from 40 6 weeks ago. HE4 now 89 from 69. The plan is to redo blood work and get another PET/CT in 6 weeks.

I felt "entitled" to better news as a reward for all the work on diet and exercise and thought briefly about tossing that plan out the window. But now, I have my wits about me and will trod forward.

I will get back to the homeopathic doctor for more of his wisdom and put more effort into meditation.

Blessings to all. Mary Ann

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

You're a trooper and know you've dug your feet in to meet your goal. Saddened to read that the numbers have gone up. Happy to hear your doc is re-doing the tests again to see if they were incorrect (crossing fingers for better news here).

I've been following what you're doing with eating and exercising and that's not encouraging for me either. Wow! Now you're going back to the table for rethinking your next plan. The idea of hemeopathic doc sounds like a great next step. Plse keep us posted what he/she suggests as remember I'm following you.

I'm throwing you positive vibes and know the energy will bring you back up. Visualize a better outcome is what I do always. Have you read "The Secret", it's very good?

(((((hugs )))))
Jan

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

damn, you are definitely entitled to better news than any trend upwards. glad doctor is redoing blood work, and another pet scan to come. . i do understand what you're feeling when you say you want to toss all the good work out the window. a friend of mine, after being diagnosed with colerectal cancer, who always ate healthily, ran every day, and took excellent care of herself, said she was going out to eat the biggest, greasiest hamburger she could find.....but, then, she too regrouped.

i do think it's a good idea to return to the homeopathic doctor; he'll have a different approach re: how to think about these tests/results, and what to do next. i hope you'll let us know what he says. i used to meditate a little, and it made a huge difference to my state of mind; very grounding. then i stopped .would like to meditate again at some point. what kind do you do, and how much? can you feel a difference when you do?

mary ann, try not to worry re: these numbers right now; i know easy to say, not easy to do. just know we're thinking of you, and wishing the best for you now and always. i feel everything is going to be all right.

hugs and sisterhood,
maggie

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

I know it's scary to have your numbers drift upwards, but recurrences are usually indicated by having CA125 sharply SPIKE (double or more). I had a CA125 in the mid-40's when I got my surprise NED CT/PET before my last remission, and now "mid 40's" is considered my number to shoot for by my oncologists. But when I had my recurrences, my CA125 spiked sharply, from 11 to 130 one time; and from 45 to 130 the second time. Try not to worry. I think you're still good, still NED. (((((Maryann)))))

howdybooth
Posts: 44
Joined: Aug 2009

It’s at times like this that I love yoga. We had the same scare with my sister recently (she has already had 2 recurrences!). Keep thinking those positive thoughts and wait for further testing! And in the mean time – I’m sending you my positive energy!

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

You are a strong & determined fighter, Mary Ann. I'm hoping that the rise in levels is just a blip on the radar and the bloodwork redo will put your mind at ease.

Big hugs & positive thoughts,
Cecile

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

Sending positive energy through the airwaves to you Mary Ann. Uptick is less than a doubling. Both times I was thought in recurrence spike was from 20s to 200s -- definitely a notable change. Keep with your good efforts even if some tiny bit is trying to surface you could just give the old 'smackdown' with your efforts! Take care, Annie

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

Actually 40 to 69 is almost double in 6 weeks - and, gratefully, not a huge leap. Hopefully it is just a fluke.

Maggie, I am going to re-read my favorite book, Getting Well Again by O. Carl Simonton (my guru). I'm having trouble getting into the meditation now - I must be missing something. I really was into it when I was in treatment and attribute my progress to his technique. Of course, I suggest everyone read this book.

Jan, I also have the Secret and will read- I've seen the video several times - and will read Louise Hay's Healing Your Life. I think I'm stuck in a negative thought pattern.

Thanks again, ladies. I appreciate all of your encouragement. Mary Ann

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

Sending lots of good thoughts and positive energy your way, Mary Ann!!!!

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

the simonton book is on my list to purchase; so will do that soon. it's odd re: meditation; it so helps, yet it's so hard to keep up.

i've heard and read hays, and i do have some trouble with her putting all the responsibility of illness on the patient; at least that's what i get from her re:her bottom line. she does have some good things to say, however.

i know when i'm stuck in negativity, i try to just let myself be there, for awhile at least. i feel we're entitled to any and all feelings we have, and it will pass.

just know we have your back, mary ann.

sisterhood,
maggie

susafina
Posts: 134
Joined: May 2010

I am sending you lots of positive vibes your way. I know you must be feeling negtive right now but we won't let you get too down. Just lean on all of us for total support. We are all in this together. Keep us all informed!
Lots of hugs are coming your way,
SUE

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

You know, one of the problems I'm having is knowing the stats for upsc are not all that great. So the knowledge I have may be actually sabatoging me. I don't want to lose hope because we've got to have hope to live!!!!

I like Jan's (I think it was Jan) thoughts about hearing stats about her illness - she blocked her ears and didn't want to hear it. Maybe I should do the same. I can't UNDO the past and I'm trying to find a way to be positive in this situaiton. Again, reading the books may help. I agree with you Maggie about Louise Hay. Simonton's approach is not quite so harsh but more geared to giving the patient insight into what may be compromising health.

Well, thanks for listening. Mary Ann

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

I can totally understand your frustration about the CA 125. I have had mine increase each time, except this last time. I too am sending positive thoughts for you. Like Maggie said, you are entitled to your feelings. If you were not disappointed in your results, you would not be human. Hoping your next test gives you encouragement. Do something FUN this weekend. In peace and caring.

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

believe me, i tried not to hear any statistics re: upsc as well, and people would slip and say things inadvertantly. so even though i never asked my doctors re: prognosis, statistics, i'd hear anyway. but, i really do believe statistics do not apply to us as individuals, and are pretty meaningless. also, no reason why we can't be on the long tail of the curve --think i saw that in the anti cancer book. in any case, i've seen all kinds of people with "terminal" cancer beat the odds, and unfortunately some who had "good prognoses" who did not. so, really, back to a crap shoot, and frankly, that levels the playing field methinks.

take heart dear one.
sisterhood,
maggie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

You know what I think of CA125; it makes us crazy! I don't think we have a handle on exactly when it is useful. Mine doubled from 7 to 14 and then I had peritoneal carcinmatosis on PET! So it worked for me but now scares me to death. Im not at all sure you can blame yourself for this cancer or recurrance. I just saw a television program how some identical twins get cancer or diseases; our genes sometimes get turned on or down through no fault of our own. Your last chemo worked quite a long time; if you have to take it again I think you will have a good response again. Also; avastin may be helpful for serous cancer.

I had a great dairy queen ice cream to settle my tummy today and it worked! calmed my nerves too! Do you have perfectionist tendencies? They may not be helpful right now. I think your oncologist is watching you closely. If you have to do chemo again I know you can do it!

I think you are a great woman!
Love ya,
Diane

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

Mary Ann, I just got back from a few days out of town, only to find your recent post about your lab values, etc. I am stunned but am counting on good news with your repeat labs and PET scan.

I can understand why you felt like throwing your hands up and I think that is perfectly normal. But you have always been the model of calm, rational thinking and that will prevail! Your commitment to those aspects of complementary health practices that made sense to you....healthy eating, exercising, meditation, energy healing etc. has always been such an inspiration to me!

I am sending you positive energy, warm thoughts and HUGE hugs!! You can do it!!

Please keep us posted!!

Karen

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

That was me in docs office putting my fingers in ears when learned about statistics!! Why put more worry on my mind as I tend to go off the deep end with worry over simple things. Try to be a cool cucumber but not always easy.

Mary Ann, we're all human and know we have do go to the negative side of thinking or as my yoga instructor calls it "stinkin' thinkin"!!! I get that way and then sit down with a good positive motivating book which helps unleash the negative thoughts.

Now plse tell me about the book GETTING WELL AGAIN. Is this for meditation? Curious as always happy to read more books and you're always full of good reading ideas (and Claudia too).

Hope you are now on the positive path and if not, get out the positive books such as The Secret (or CD).

Take care and know you're in my thoughts and prayers!!
Jan

kathybd
Posts: 126
Joined: Jul 2009

I too have been down lately and decided to get back to Louise Hay's CD and books. They always seem to help me in these vulnerable times. You are such a strong lady, that I know your regrouping is going to bring positive results.
Here's sending you much love, hugs, positive thoughts and healing energy to a wonderful, dear person!!
Kathy

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

Funny thing about "perfectionist tendencies" - you hit the nail on the head with that one. I know I got on your case about the ice cream and you would have scoffed at me yesterday - I just ate the worst lunch for the diet I've been following but thought - what the heck. I enjoyed a roast beef sandwich on roll with au jus, fried onion rings, and triffle for dessert! There was a decent spinach salad - but with dastardly bacon bits!!! It really did hit the spot.

Simonton's book talks about his work with terminally ill (given up for dead) cancer patients and use of guided imagery and other exercises to get at the person's core thinking. He had success if reversing progression of disease. I just ordered another book he co-authored entitled 9 steps to reverse and prevent cancer.

I'm reading Louise Hay's book now - and forging ahead like we all do.

Many blessings to you all. Mary Ann

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

Mary Ann,

Since I'm just stepping into guided imagery, what would be the best first book to get me going? Sorry but so many options with what you're suggesting that best to ask, as my money allotment for books has become slim.

Nice to hear you enjoy that occasional "junk food" meal. We all could be gone tomorrow, so live it up but as with everything "in moderation".

Did attend a lecture from a doctor at our local top rated school, Washington University, St Louis, MO. She was speaking about exercise and cancer and lots of research on doing some form of exercise (even if just simply walking)30 minutes PER DAY. Also we're all getting hit with organic, etc, and she know how expensive it is, but sees great benefits if we eat fruit. Her take, if you can't afford the organic just get non-organic down. Any fruit is better than none at all!!! As usual most of research is on breast, colon, etc, so we can only assume it has some basis with research on other cancers. Surely getting on our tennis shoes and moving is better than being a couch potato...think?

Best to you
Jan

california_artist
Posts: 850
Joined: Jan 2009

Hey, I've been sick for a bit and haven't been to the library or I would have spoken right away. You know, one of the things that is most important in getting well is supressing stress and enjoying life so if you truly loved that lunch, then perhpas that was the ticket at the time, that you were in need of. I'm taking medicine for the cough and my brain's gone a missin'.

Think I will get the Lousie Hay book.

You know I love you. My heart is with you. Take a big, long, deep breath, hold it, and smile. You are alive, and my car works. I could come down and slap you around for a bit. Maybe even call you a stupid 'Ho, that always makes my mom laugh cause it is so out of character for my to say and for her to hear. A little gentle loving abuse is a wonderfully refershing thing.

Love and smushy hugs, and for those who don't know me, this must seem reallly odd--for those of you that do know me--it's pretty much same old same old.

I am very, very inheartened with all the big names that are looking into the more natural options. a corner is being turned.

You can call me soon, I'll be getting a real phone. tah dah.

Would you like the cd I made of all the cancer research? I had put it aside because you had said you wanted to stop thinking about cancer, cancer, cancer.

Check out Dr. Boik's site. He's put most of his chapters up there and his research is hearalded? as the best by the medical community. They have called his books benchmark epics.

In regards to your numbers, are you certain that the same lab and same exact test is being done?

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

i must say i enjoyed vicariously your lunch the other day, as i did linda's description of a meal she'd served guests, and the left overs. yummy. i do occasionally let myself have a bite of this dessert or that, or a bite of hamburger, but clearly doesn't really satisfy. what truly is delicious is my nightly bowl of fresh summer fruit, fresh ginger, and unsweetened low fat yogurt--the best! still, miss the old foods, and don't really think it does any harm to stray from time to time. thanx for letting us know your lunch menu! and for recommending simonton's 9 steps to reverse and prevent cancer--sounds just the ticket.

keep taking good care,
sisterhood,
maggie

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