Looking for stage IV survivors?

takingcontrol58 said:

Darla's mom

Good luck with your CT scan. I am glad you are getting on the metformin when you start the chemo.

As long as you start addressing some of your own health concerns, and start healing your body, I think
you go a long way towards keeping cancer away. I think the key is attacking all the issues that led 
to your cancer - that is how you defeat cancer.  You have to come at it from many directions-isn't that
how you actually win a war? You don't just use one battle strategy but come at the enemy from many
directions?  Air, sea, land?  I think you need to do the same with cancer. Standard cancer treatment is
not enough when you have advanced or metastatic cancer.

Also, I only had 6 infusions of the Taxol/Carbo- I had no radiation and am happy I was able to avoid
that treatment.  It was cancelled once my cancer metastasized. Once I had tumors to target, they
pulled the radiation. 

Have faith in your self. I decided I was going to live despite what the top cancer hospital in the country
told me. They obviously don't know everything.

Takingcontrol58

 

TC58, I never get tired of reading your posts! They are so informative and it seems like each time you are giving us all something new to think about. I think I'm going to get the books you mentioned and do my thing researching the caveats for the supplements to share...but not till after the holidays.

One pattern that I'm picking up on for a lot of the mentioned supplements is that you need to discontinue them for at least 2 weeks before any surgery or procedures that could cause bleeding like colonoscopies...even fish oil, Maitake D fraction, and Black Cumin Seed which I think a lot of people don't realize can impact bleeding time; I know I didn't know about the Omega 3's till I recently had some pre-op preps. I can't take fish oil, so I take Krill and other non-fish Omega-3's and I even had to stop those before some minor surgery I had last week and have to wait till 2 weeks after to resume them.

My pre-op testing showed I had trace blood in my urine and I'm wonding if that's from some of these supplements, so I'm holding them a bit longer until I have my physical in January to see if it's still there in the next urinalysis. Has that happened to anybody else who's started on some of these supplements or baby aspirin therapy? I don't think I have a UTI, but I'm on a diuretic that puts me at risk for kidney stones that could be getting started and causing some irritation. I'm also at higher risk for bladder cancer because of the Lynch Syndrome and pelvic radiation, so those are all possibilities I'll have to get checked out. Not looking forward to it, but I know that even trace blood in the urine is a red flag that something new is going on. Lucky me!

This thread has been extremely inspirational. Thank you, all the survivors, for taking the time and sharing your stories with us. It means so much. 

hi all. I'm new to this board.  Have stage 4a endometrial adenocarcinoma. Large endometrial cancer that extends past the uterine wall.    Diagnosed on May 2. No symptoms until a month earlier!  Metastasis to a couple of lymph nodes, very aggressive vaginal mass, cancer in 1 inch of sigmoid colon. Invasion of my urethra and possible involvement with right ureter.  I have been a half marathoner and act and exercise way younger than my 62 years of age.  No co morbidities, no heart disease, no diabetes, no lung problems.  Here's my situation:

had 6 rounds of taxol and carbo platin.  Had a remarkable response in the first three months, but- the next three were like there was no chemo at all.  I desperately want a hysterectomy but after i had so little response after the seond three chemos, they put surgery on hold.  They won't do surgery if there is active involvement by metastasis.  So the docs agree to try radiation.  I had 6 weeks of external beam radiation and three brachytherapies.  I had to wait 5 weeks to find out whether the radiation worked enough so that I could have surgery.  That time is this Wednesday. I am having an MRI tomorrow and a petscan Wednesday, then I meet with the surgeon to find out if we are a go or not.

if we are not a go I will be devastated.  I am one tough broad, pretty much sailed through chemo, and jogged to radiation and back!  I have so many questions for people here!  How did you deal with waiting??  It's Christmas Day and I'm hoping and praying for a miracle.  But this disease has proven to,be very crafty and managed to mutate out of being affected by chemo.  Does that also,happen with radiation?  Because I am so healthy they are considering doing surgery after the chemo and radiation, not before which is usual.  How is it that so many ladies here were able to have a hysterectomy with advanced endometrial cancer and I couldn't?

i agree with whoever wrote that the approach to cancer should be multi focal.  I have been doing serious green juices and wheat grass juice- fresh made each day, and am taking supplements that I have educated myself on that I think should be helpful. But I'm not a doctor! My Med oncologist does not do integrative therapy- how do you find a naturopath you can trust?  I don't know if different supplements work on different cancers and I don't know which are most indicated by endo cancer!  

most important, how do you keep a,positive attitude but prepare yourself for the worst at the same time?  I'm usually upbeat but this has really gotten to me and I am literally terrified of what I will learn on Wednesday! Can you help?  Any thoughts or pearls,of wisdom would be greatly appreciated!  Thank you.  DKK

I'm puzzled as well. Are you on a neoadjuvant treatment (3 chemos, CT scan, HOPEFULLY surgery, but if not, you might need another chemo round before surgery, then 3 chemos), and your third test wasn't low enough? Do you have fibroids, endometrosis, pevlic inflammatory disease? That could affect a C-125 test, if that's what they're going by. I've been trying to tell my doctor that, since I had some nasty fibroid issues for decades, and still have fibroids today. Supposedly, the doctor is aware of this. Supposedly. I'm nervously awaiting the results of the second C-125; the first one after the chemo. If the number is lower, some of the reading might have been the cancer, I guess.

Whether I use this doctor or not, going for a second opinion at another facility was one of the best things I did. Having fresh eyes looking at your results and a different doctor or two chatting with you can at least show you whether the treatment you're getting is considered effective by other medical facilities or not, and you may find you like the second doctor better. At least put your mind at ease with that.

If your current doctor did not explain your proposed treatment plan for you, I'd be a little wary.

In any case, it looks like you need some clear answers. It can be so frustrating when you can't seem to get them! I'm having that trouble myself. My second opinion doctors did provide most of the answers, though. I'll give them credit for that.

As for no symptoms, I had none until late October, and since the bleeding did not initally seem to be vaginal and resembled kidney stones (which I do get), it could be pretty darn surprising when you suddently have a massive problem inside you. I always thought that cancers were like this: Have symptoms and/or find mass during routine test, biopsy, surgery, recovery. Boy was I wrong about that! 

As for attitude, I think positively as much as possible. But I allow myself to be afraid and depresed sometimes. UPSC is nasty. HOWEVER, the main thing is not to give up. Also, I like what my onco nurse told me ... take things a chunk at a time. Right now, my goal is to eat better, get more sleep, and go to my chemo treatments and doctor meetings. That is what I need to do NOW. Otherwise, I can't attain that long-term goal. 

DKK said:

not great news

Hi Pinky and Evolo- I really appreciate your input.  My cancer by the time it was found was well outside the uterine walls, had a huge vaginal tumor and extended disease in lymph nodes and my intestines.  They couldn't do surgery because they could not get clean margins on the uterus.  You are right that they were doing it backward- they agreed to do it backward because I've been so strong.  Typically you don't do surgery after chemo and especially radiation because the skin gets compromised- more friable and harder to heal.

Unfortunately this is all academic now.  I just yesterday had an MRI and petscan ;  the good news is that the radiation pretty much obliterated all the cancer in my pelvis.  The utterly gut wrenching news is that the cancer spread to my liver, mid lobe lungs and a lymph node behind my heart.  They could do surgery but getting the uterus out is no longer a pressing issue- the metastasis to my vital organs is.i have been treated at Mayo Clinic, but they are sending me to MSK because there are a couple of immunotherapy trials there that my doc thinks I qualify for. 

Im just so disheartened and in shock.  Of all the things I tried to prepare myself to hear, this just wasn't one of them......  I'm a pretty positive person but I am struggling like hell right now not to sink into a deep depression.  This cancer sucks!

 

I pray they find a way to help you...I am so very very sorry...you will be in my prayers...

evolo58 said:

Darla's Mom ... if it's any

Darla's Mom ... if it's any consolation, the second-opinion doctor I saw yesterday told me to pay more attention to any studies post-2012 that use more-recent test groups. Many of the studies you see on the Internet use data collected from the 90s and first decade of the 2000s. While these are of some use, new treatment protocol has led to improvements in remissions and overall survival.

Dramatically? No. It's not like the two-year standard prounouncement suddenly turned to five years. This is a rare and aggressive disease, and it won't get the attention that the more common forms of cancer get. But still, we are seeing positive resutls from the use of certain chemo protocols for instance. UPSC only became its own entity in the 80s, and through the 90s and early 2000s, doctors weren't too sure how to approach it. Some even used radiation only ... no chemo at all. I think it's really encouraging to see more and more Stage 4-ers here hit that five-year and beyond mark in the last few years.

In addition, I am seeing improvements in how recurrences are handled. Reading the earliest studies, it seemed that once you got one recurrence, you were toast. But looking at these ladies' data here, so many have had two, three or more recurrences and they are still around to talk about them.

I think I mentioned this to you once before ... can I blame the chemo for that? ... but the earliest studies citing our survival rate ... well, I will not mention it here, and do not recommend you look for it. It's really depressing. To up the percentage even as much as your medical oncologist has (and I've seen a couple of recent studies repeating it) shows a whole lot more hope here. With better ways to pinpoint specific problems for each patient that I've been seeing over the last two or three years, well ... let us all pray that percentage goes even highter!

This second doctor I saw also emphasized that survival statistics are not set in stone. While she spoke about them briefly when I pushed about them, she clearly did not want to dwell on them, since probability varies from patient to patient (that statistic of one). Some patients are far older, for instance, or have other health issues. Some refuse treatment. And again, those statistics even on this site use older studies. 

My current onco nurse and another second-opinion doctor told me that while a far-off goal is great, focus on more-immediate goals. Keep yourself healthy so you can better withstand surgery and chemo. Some here follow stricter diets, but the two medical professionals emphasize that the main thing is to exercise, eat better and lose  a few pounds if you're on the hefty side. And most of all, it's OK to be afraid ... I think 99% of us are sometimes (and that might be a conservative number), but for the most part, stay positive.

I'll be pushing for all of ya here! Go, ladies!

Fran

Immunotherapy is in its infancy, but it works very well for some and is the way forward, I believe. I was stage 3CII UPSC at diagnosis, did not respond to chemo and rads, ended up with a large liver mass while on chemo. I declined the offer to try more/different palliative chemos and surgery for the liver lesion, but accepted genomic testing of one of my hyster tumors and was found to be MSI-H and decided I wanted to try Keytruda which was not yet approved for MSI-H solid tumors (it is now for any type of cancer) and have been on it for 15 months. My liver mass and ascites are gone and lymph nodes do (or did I have not had a pet/ct in a year) not light up anymore. I use MRIs and ultrasounds for followup and do a few other things as well to prevent reoccurance. You might want to ask for genomic testing of your tumor. It takes several months to start working. Be informed, use google, research, ask questions. Being informed is key. I am not cured and yes I will die from this. it is what it is, but I can say for certain I would not be alive today was it not for Keytruda. 

DKK, so sorry to hear your news. It is understandable that you are fighting the dark side of things. I hope you are able to get into a trial asap and get some positive results from it. Please come back and let us know how you are doing. We are all here for you.

Love and Hugs,

Cindi

Thank you all for your good wishes.  I ad an apt this am with MSK.  I should start the trial, which I qualify for, in about a week or so. They did tell me that whatever mutations are in my tumors, they tend to respond to immuno drugs.  So there's a ray of hope.  I'll keep you posted.  Thank you soooo much for your kindness.  Diane 

Well, it's interesting you got a 20% statistic. I got a lower one, and I have the same clinical diagnosis. I think I like your surgeon better.

Statistics can be really misleading. Most are based on data from several years ago .... some as long ago as the 90s! Even ten years ago, treatments could be very different. Our disease was really only separated from the usual adenocarcinoma and more-extensively studied since the 80s. I find it really difficult to separate more-recent findings from older ones sometimes, but from what I can glean, things have improved noticeably since the early days. 

These statistics include women who refused any sort of treatment. those of an advanced age who died from other causes (though the cancer probably didn't help things any), those who had other complications (very, very unfortunately), those without access to adequate facilities (very unfortunately as wel), and of course, those who underwent treatments 10-15 years ago that turned out to not be as effective for Stage 4s, such as radiology only. It also includes women with pre-existing conditions that complicated their treatment. These statistics are like a thicket.

Each person is different. 

Some more-recent studies have attempted to separate these factors, and survival statistics vary. Some are actually promising. I have seen the 20% figure you cited here from one more-recent study, though it took only one or two more factors into account. Considering that some older ones were much lower (even lower than the one I got), this is an improvement. EVERY percentage point upward is an improvement!

I have heard of people with other stage-4 cancers (some with even lower percentages) who are still alive and kicking way past five years. There are several women here with the same cancer we have, as well as Stage 4 ovarian and peritoneal cancers that pretty much have the same statistics we do, who passed the five-year mark and beyond.

And yes, it's confusing and annoying. I sometimes wonder if certain doctors and medical staff know what they're talking about sometimes, judging from the posts here!

I think the key is to keep on keeping on. Realize statistics for what they are, try maintain a positive attitude, don't quit, and push for that five-year+ goal. It is difficult. It is NOT impossible.

EDIT ... One big thing IS a postive attitude. Even the onco nurse told me that.

And make no mistake ... this disease is a nasty beast. Recurrences often happen. We will always have to be vigilant and catch any problems early. While there is no cure, there can be maintenance.

Someone here posted something really interesting about stastistics. I'll see if I can't find that post.

EDIT AGAIN ... Here it is:  https://csn.cancer.org/node/211307 . And please realize that treatments have improved since 2011, when this thread came out.

Diane, So glad to hear that you have a new plan! Keep that ray of hope shining bright. It sure sounds promising. Thanks for letting us know.

Love and Hugs,

Cindi