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Bad Sad CT Today

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

Felt constipation for a week, kinda had PTSD flashback from one year two months ago when Uterine Clear Stage IV Grade III was discovered, no other symptoms besides the constipation.
Finished four Carbo/Taxol/ two Carbo-Doxil eight months ago. Changed diet to reflect Servan-Screiber's Anti Cancer book, exercise on treadmill six days a week, you warriorettes were and are fountains of knowledge and support.
I 'negotiated' CT for Sunday got prelim results today, about 5 cm tumor in pelvic are putting pressure on colon but mainly seems to be in pelvic area closer to cervics.
Devastated, thought all we, I was doing would stave off 'expected' recurrence. Guess you can't fool mother nature (as the old ad used to say).
Waiting for Ca 125 results on Wednesday. One moth ago it was 7.5.
Don't think they'll operate, Chemo again.

Sara

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

i'm sorry to hear you have a recurrence. i had my first recurrence about 6 months ago, and had chemo again, and i have to say, the second chemo was much rougher than the first, and am not sure it did such a good job. now i'm doing high dose iv vitamin c 3x week, plus supplements and more diet changes under the care of a holistic doctor in san francisco. i don't know what you will choose to do, but if i had it to do over again, i would not do the second chemo, but go straight to where i am now. in any case, don't let them rush you. if you can afford alternative treatment and it's available to you, you might choose to look into it before making a decision.

best of luck to you.

sisterhood,
maggie

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

If you can manage to treat your constipation successfully, maybe you can hold off on chemo. I think your efforts minimized the amount of cancer that recurred.

I'm hoping your CA-125 stays stable.

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

Thanks. Do you know anyone who delayed getting second line 'defense' of Chemo? How did that outcome pan out?

sara

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

How soon after the end of Chemo was your recurrence. Looks like years.
Sara

evertheoptimist
Posts: 140
Joined: Jan 2011

I am stunned by the advice here. The poster developed 5 cm tumor in a very short amount of time, and people are saying, hold off on the treatment and go to the holistic care provider?

If her CA125 was 7.5 a months ago, this is an incredibly fast move on the part of the cancer. Now, people are advising on an internet forum that a patient like this should wait? Aren't we getting reckless here?

I recurred 3-4 months after the initial remission. Mine too came back really fast: one month, CA125 at 9. 4 weeks later, already tumor implants on the scan. I am in treatment right now.

I am ALL IN FAVOR of integrative oncology. I do all the right thing - I don't think anybody eats healthier than I do: 15-20 servings of most vegetables, no meat, no diary, no sugar, etc. Exercise religiously. Accupunture. Yet, the cancer still came back. I don't regret any of my healthy life style: if anything I think it helped me get into the initial remission against odds, and will help me get a better prognosis than otherwise.

It's when people go into the mode of saying "eschew the mainstream treatment" to others that all of my alarms are going full blast. The poster has already been maintaining very healthy life style. What additional miracle do you think the "integrative" approach will bestow on her?

Sharing personal opinions are great, but advising people to eschew or delay potentially life saving treatment is incredibly irresponsible. Even the greatly esteemed Dr. Block mentioned in his seminal book that the goal of integrative oncology is to provide supplemental, holistic benefit and disease management, and NOT to replace the proven main stream treatment. I believe Life over Cancer book had the same philosophy.

By the way, it's been only two weeks since I joined a clinical trial for my recurrence, and I believe it's already working: I feel it, and by now, I am so in tune with my body that I felt the recurrence happening before any tests and only 2 weeks out of my "CLEAN" tests and scans. There is NO way I could already be on my way to getting better without the "main stream" intervention with chemo and other drugs. I am maintaining such healthy life style, the marginal "curative" value of my healthy choice is very little. When the cancer comes back with the major fire power in spite of all the right things done in the book of integrative oncology, it's time to deploy equally powerful measures.

If I were OP, I would inquire about the surgery. Given the size of the tumor, it's already, in my mind, in the surgical realm, if it is operable. There are ample studies coming out now that shows that second debulking is associated with better prognosis as it reduces the tumor load the body has to work on.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I am so sorry to hear of your recurrence, particularly as you were following all the diet/exercise advice. It is so hard to know what to do when you thought that you were already doing everything possible to prevent this happening.
I think it's time to really ramp up the questions to your health providers regarding surgery, chemo etc to enable you to make an informed decision.
I agree with "evertheoptimist" that if secondary "dubulking" surgery is possible, it can improve the prognosis by reducing the tumour load. So if the tumour is an isolated nodule, rather than widespread multiple "spots", then surgery may well be a viable option.
My second recurrence was in the vaginal vault and wrapped around the sigmoid colon. I had surgery and all visible cancer was removed, before receiving 6 cycles of carbo/taxol. I am definitely a believer in reducing the tumour load to give the chemo a better chance.
I hope you soon have enough information to make the decision that is best for you and wish you a speedy return to remission.
All good wishes
Helen

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

To recur 8 months after your initial treatment protocol, and with a tumor that size; I'm just so sorry to hear that news. Is there any chnec it is a benign tumor? Will you be having a PET scan now to see if it 'lights up' or will they be able to get a needle in there to do a needle biopsy to make sure you are dealing with a malignant tumor? I can't remember your pathology: was your cancer clear cell, papillary serous, or another type of aggressive Grade 3 or Grade 4 cancer type? You need the 'big guns' (aggressive chemo or surgery) if it is.

My own experience and a lot of the research I've done shows that high grade cancers that recur quickly are often chemo-resistant. That doesn't mean I wouldn't TRY chemo, since that may not be the case with you persinally. (God knows I've tried a bunch of different chemo drugs since I recurred!) Dense dose weekly taxol was the only chemo drug that brought me into a brief remission again, and then even that stopped working for me. But that doesn't mean it won't be an answer for you. Surgery recovery is no picnic; as I'm sure you remember.

I would TRY the chemo if your oncology team is against surgery at this time. But if you continue to have disease progression on the first 1 or 2 chemo drugs tried, I'd start shopping around for another solution. Radiation is a possibility, cyber knife, and conventional second debulking surgery. Of your choices, chemo is usually the least intrusive and so they usually like to try that first. & because chemo is systemic (attacking cancer throughout your body) you need to consider it at least, because surgery and radiation ignore any other cancer that may be starting up elsewhere in your body while you concentrate on your newly identified tumor.

I am waiting for the results of a CT/PET scan I had yesterday that will tell me what my cancer has been up to, outside of my liver, while I spent the past 5 months focusing liver-directed radiation treatment on what was considered my most life-threatening tumors (in my liver). I will know soon if that gamble paid off, or if my aggressive cancer used that chemo-free time to make mischief elsewhere in my body.

But before you agree to any treatment plan, make sure this is really a malignant tumor if you haven't. I so hate that you are having to travel this harder path. I hope you are soon back in remission, dear girl. ((((big hugs)))

JoAnnDK
Posts: 275
Joined: Jun 2011

....was stunned by the advice here. Thanks for posting what you did, EvertheOptimist. You said it all.

JOANN

ValT
Posts: 6
Joined: Dec 2009

Evertheoptimist, Where and what are your trials? My sister in law has done carboplatinum, doxil and now gemzar-- in addition to two surgeries and radiation. Doxil worked for some time. Now looking for other options if Gemzar starts to fail. She would love a clean scan. And would want to consider any trial. Hope its still working for you.

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

So sorry to hear this news Sara. I can only reiterate some of above comments: First, confirmation of the nature of the tumor, that it is indeed same cancer recurring, is very important before starting any treatment. Also, complete CT report to clarify that the one tumor is only abnormality would be needed to determine possible consideration of second surgery. When I had a recurrence of breast cancer some years ago, the oncologist recommended no surgery just treat with radiation and tamoxifen. I went with radiation oncologist's comment that less cancer to treat would increase likelihood of successful treatment. That was 12 years ago and I'm glad I went the surgery route. However, chemo first for you could make the tumor more available for surgery or even eliminate the need for it. The pressure on your colon is cause for acting sooner and not delaying too long, but I do hope you have time to consider options depending on what your doctor(s)' recommendations are. I have previously had a tendency to jump into treatment, fearful of any delay. These days i am trying to be more circumspect and consider options. I am dealing with recurrence as well and have my PET/CT tomorrow to see what has been happening elsewhere while having localized radiation treatment for palliative treatment.
Big cyberhugs Sara.
Annie

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Sara

I am hoping that you will consider all of your options before making a decision on treatment. When you get bad news such as a nodule on a scan, of course, it is scary but certainly not the time to panic. Uterine clear cell cancer is known to have a high rate of recurrence yet I didn't mean to imply that you should delay treatment--only chemo--as chemo resistance is such a problem with so many survivors.

If I were in your position, I would want to see another oncologist who may offer a different approach (radiation/surgery/whatever) to treat me. Of course, you may not want to waste time investigating your options and begin chemo ASAP. I have agree with Linda and also say that I would want a PET scan done if insurance will cover it.

It is more common for cancer survivors to turn to integrative doctors for treatment when they have exhausted all of the treatments (usually one chemo after another) offered by the oncologists. At that point, there isn't much bone marrow left to work with so I can see why Maggie is choosing her road earlier rather than later.

For stem cell therapy, you have to go outside of the US. That may be an option if you have the financial resources to pay for that type of approach. Currently, stem cell therapy is not approved for gyn cancers in the US but it may be the way of the future as it is already being used for malignant melanoma and kidney cancer.

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

Thank you all for being there. Still quite weepy but i am working pretty full time and that is a godsend.
More tests.  Funnily enough my blood test are all great, even the cancer markers- ca "125 = 7
, but I have a tumor the size of a baby's head if not larger which is taking up a lot of space in my pelvic area.
Yesterday had gynecological ultrasound, found same huge tumor in pelvic area.
Next week PET scan. Probably have to begin Chemo again, told not realistic to think of surgery but these are
strange results, though docs have seen them before.

Had no trouble getting PET scan approved.

Sara

GMAR Tov,

Lois B.
Posts: 10
Joined: Sep 2011

Your Ca 125 was still in range and they are diagnosing a recurrence. Could you get another opinion? There could possibly be another explanation for the growth - perhaps scar tissue if you had a hysterectomy, an underlying lipoma which is benign fatty tissue.

Wish you the best as you go forth with whatever lies ahead.

A friend once told me yesterday is history and tomorrow is a mystery - today is the Present.
I know you'll get there one minute at a time.

I had gotten three opinions when told I had a recurrence. The third was to see if I could qualify for a trial at MD Anderson. They redid the tests and I was told there was no recurrence at that time.

Praying for you.

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

It might help you some to know that 5 cm is not nearly as big as a baby's head, which would be very terrifying. There are 2.5 cm per inch, so 5 cm is two inches. Scary, but not terrifying. Hope that helps your level of fear drop some.

Have you had heated pelvic chemo suggested as a possible way to treat this?

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Actually, 5 cm is only 1.96 inches. Sometimes tumors calcify. I am happy to hear the CA-125 is behaving.

JoAnnDK
Posts: 275
Joined: Jun 2011

My sister had a stem cell transplant for lupus and it left her worse off than she was before. It was okay for a year, once she got over the treatment, but then she went downhill and the complications set in. It is not the panacea many think it is.

JoAnnDK
Posts: 275
Joined: Jun 2011

I guess I would get another opinion, maybe ..... rushing into treatment is the typical response, I think, and not so wrong.

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

i realized that i assumed that the tumor was cancer, as did some others here, until i read lois b's post, which suggests different possibilities. i think someone else also mentioned that you first need to know what you're dealing with -- obviously this will make all the difference. it may be cancer, and it may not! it does seem a little unusual to have had such a low ca 125 recently, then suddenly a slightly large tumor. whatever it is, it often makes sense to get another opinion--surgery? chemo? radiation? adjunctive therapy? what's available to you, and do you have an intuitive sense of what you might want? no one knows what the "right" choice is for any one of us; i hope you can gather as much information as you can handle, and i think you'll be doing the best that anyone of us could do.

do you live in israel? do they have different protocols there, or treatments they're doing, that aren't being done here? i'd be interested to know, if you have a spare moment.

best to you,

sisterhood,
maggie

evertheoptimist
Posts: 140
Joined: Jan 2011

Sara,

has CA125 been a reliable number for you before? Meaning, high before chemo, coming down during chemo, ending with a nadir at the end of the chemo.

If this is the case, there is a good chance that your tumor might not be cancerous since your CA125 is still low. If you CA125 has NOT been a reliable indicator, that there is a good chance that your tumor is cancerous but CA125 is not picking it up.

Either way, PET scan is in order for you. If it turned out to be cancerous, I wouldn't want hold off on treatment. I would get treatment as soon as realistically possible, leaving enough time for a second opinion, some good research etc. At the time of initial diagnosis, the sooner you catch the cancer, the better the prognosis. Why would it be any different for recurrence? Those who say you should eschew/hold off on conventional treatment and go "alternate" way may have a valid point if this is your 7th recurrence and you exhausted all the combinations of chemo drugs. However, this is first your recurrence, and you still have a whole arsenal full of viable options. The sooner you arrest the cancer's growth, the better off you are, I think: you are preventing it from metastasing to far away places. There are some studies that say earlier treatment for recurrent did not produce better prognosis. However, note that this study is about early treatment based on rising CA125 only with a clean scan. When the tumors are showing on the scan, all bets are off, and it's an open season.

By the way, even if the tumor is inoperable, chemo can still take care of it. My initial surgery left about the same size tumor behind (they couldn't resect it), but my front line chemo wiped it out - completely melted it away. This is why I am really scratching my head: am I really platinum resistant since I recurred so soon, or was it the case, I should have stayed on chemo a couple of more cycles: after all I had a huge tumor load to deal with (in addition to the lime sized tumor, there are a lot of smaller ones left behind), and the standard 6 cycle treatment may have been good enough to give me clean scan and CA 125 in low teens, it may have had more work to do and we quit too soon.....

Well, I guess we will never know..... I know for sure one thing: this time around, I am not quitting the moment I get into "clinical remission status" (clean scan plus normal CA125). I want to stay on a couple of cycles beyond that point.

Good luck.....

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

Dr. Folkman has addressed the length of time it can take a person's cancer to regress and stay regressed. Often the trial results based on typical cycles show no permanent response. However, he found that with each additional cycle of treatment, the turmor load came down slowly after each group of cycles and they were able to elicit a complete cure.
Cannot recommend reading his book strongly enough. Dr. Folkman's War.

evertheoptimist
Posts: 140
Joined: Jan 2011

california artist,

Thank you so much for your input. I will definitely look into that book.

By the way, I love your pictures, but I Sooooooooooooo loved your art work. can I see more of them?

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

What the heck is your first name?

This painting is called The Visitors. There is a little lizard on the table, some mouse tracks going into a hole in the baseboard, and some goofey guy at the back door. You are more than welcome to copy it. Life is hard enough, if it makes you happy, that's fine with me. If that one doesn't move you, there will be more when I get back from the trip I will be taking soonish.

evertheoptimist
Posts: 140
Joined: Jan 2011

I love original art pieces. Whenever we travel overseas, I don't buy any souvenirs, but I make a point of getting a piece of original art from a local artist. My house is full of them. When I look at them, the bring back all the happy memories..... My favorite is one we bought in China - we literally bought it off the wall of a small regional museum. Another interesting piece was the one we got from an Eduadorean indigenous (meaning, native Indian) artist. Not even a name on the canvass, but so soul searching......

Show us more of your art work. I enjoy them all.

evertheoptimist
Posts: 140
Joined: Jan 2011

Oh, I love this one VERY MUCH indeed. Ambient of a bit of a Matisse. A tiny bit of Van Gogh, perhaps (especially the chair. Van Gogh's chairs are always like that: a bit of crazy curvy lines as if they are about to fly off the floor and dance in the air). Not that I discount your originality. It was meant to be a compliment.

how big is this piece of work? Your house must be like a museum.

can you just include your art work (multiple of them) in your profile - I don't know if it's possible though..... I just want to enjoy them when I am blue..... I won't copy them - that's violating your copy right. All I need is just to be able to see more.....

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

The chair was sitting at my dining room table along with three others, I used to work at a funky furniture store in Alexandria? VA. and the four chairs and the 54" solid oak table came across the country in a Ford Crown Victoria years ago. Nothing was orange though. I adore van gogh. His brother and his brother's wife, after his death, did so much to not only promote his art, but she went around the country and picked pieces from as odd places as plugging up a hole in a pig pen. She seldom gets mentioned, but what vision. And Theo just gave him money for art supplies and to live. This painting preceded my interest in Van Gogh by about four years.

Size? It used to be some bigger, but alas I had but the one frame, so had to cut it down from 18x24 to fit in a 16 x 20. There was one time when I had to cut another painting, and had placed the empty frame over it to see which part I want to save, that my daughter and I kept on moving the frame back and forth as I preferred one section and she another. In the end I won. It is a favorite and is currently at my brother's. One of my favorite's was lost, when my daughter could no longer pay her expensive storage. She is a writer, unpublished but her honed abilities are so incredible that my painting pale in comparison. Her brain too is on all the time.

I do think that altruism is alive and well and living in tents on Wall Street.

I had all my art up on yessy for one year. I enjoyed it so. But couldn't continue the next year as I have no Theo in my life, and my grand daughter's education is my top priority.

Thanks again,

claudia

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

What a GORGEOUS, absolutely gorgeous painting. I love the lizard, the guy at the back door, the colors... You are so, so talented; and yet you seem to downplay those talents. I'll bet your daughter is something else, but so are you.

If I had some money, I would buy some of your art. Too bad for you that I don't.

Anyway, altruism is still living in tents just the other side of the Brooklyn Bridge. As I wrote to you, they are like the tiny green plant that pushes up the concrete sidewalk.

Jill

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

altruism is still living in tents just the other side of the Brooklyn Bridge.

There is no end to the pages that could be.

And if I had some money, I would gladly give you my paintings. Were that it were.

Remember, do you know I'm easy?? Joe Ferrara was his name.

My daughter wants to buy it. I am torn. It started as a study in the shadow that resides in a lemon, and then the lemon needed a home, and some friends, and a chair and some luncheon guests, which is the other name. I vacillate.

that's how I often paint. A thing on a page of watercolor paper, and the thing needs a story and a way to tell it.

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

and the title of the painting could be "the lemon needed a home, and some friends, and a chair and some luncheon guests." How perfect!

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

I too am sorry about the scary tumors. Glad you will be having more tests to determine what they are - is your doc going to biopsy or just do PET. Seems biopsy would be more accurate to diagnose.

I also agree with Optimist's comments. Seems like there are many alternative folks posting here. Lot of things to consider. With my recurrence (or maybe this resistant cancer was never eradiacted), I received recommended radiation and chemo and am now nearly one year NED. I guess you could call me a grateful chemo recipient.

I have been traveling and just met a woman surviving breast cancer. She did traditional treatment (including chemo) 15 years ago and doing well. She just buried her cousin who died of breast cancer tx with supplements. she is from Sante Fe and said that they have a very high cancer death rate there which is attributed to the great number of people who practice alternative treatment. So which is the best way to go???? We all need to decide best way for us.

I wish you all the best in your decison making. Mary Ann

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