CSN Login
Members Online: 7

You are here

Looking for stage IV survivors?

Darla's Mom
Posts: 12
Joined: Oct 2017

I was diagnosed in October with IVB high grade serous adenocarcinoma. Underwent radical hysterectomy

I am facing chemo now.

My surgeon believes that I can survive this. Statistics tell me differently. Indeed the medical oncologist I met with told me that I have a 20% chance of survival within 5 years. They are only recommending chemo -  Paclitaxel and Carboplatin for 6 rounds. I feel like I am getting mixed messages here.

Since this began, my life has been put on hold.  

 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2599
Joined: Mar 2013

Dear Darla - please don't read statistics, you are a statistic of ONE.  I am betting there is no 'expiration' date stamped on the bottom of your foot - so go with your surgeon.  As for the chemo, that sounds like what almost all of the ladies here went with (some also had radiatiion and we talk about that a lot on some of the threads)

You are not alone and will be welcomed with open arms here.  Please don't hesitate to ask any question, the women here are pretty awesome.

Also, since your doctor seems pretty open to things, see if he is interested in you participating in this clinical trial:

https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?q=endometrial&loc=0&rl=1&id=NCI-2013-02284&pn=1&ni=10

Darla's Mom
Posts: 12
Joined: Oct 2017

NoTimeForCancer-

 

Thank you for your kind words and support. Finding this group has been a godsend. I have felt so alone since this began.

It looks like I am not a candidate for this clinical trail as I don't meet the inclusion criteria for the measurable lesion at this time. I will bring this up to my gyn onc to see if she will put me on metformin regardless.

I am not afraid of the chemo. I am terrified that the chemo won't work and this may all be for nothing. I am going to go forward and fight this with everything I have.

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

 

While I have not survived stage 4, I have survived stage 3 carcinoma sarcoma uterine cancer.  There are other ladies that have survived stage 4 on this site.  No doctor can tell you what your expiration date is.  I freaked when I was told I had cancer and went on the internet.  It stated I had 20% of 5 years with a higher grade and stage of this cancer.  I am a 6 year survivor with no recurrence.  I had 6 rounds of carbo / taxol chemo and no radiation.

 

It all depends on your outlook.  Are you ready to do everything to fight this or going to sit back and follow only you drs advice?  I talked with the ladies on this site, talked with nutritionist, read cancer books, read information on the National Cancer Institute site, changed my eating habits, started taking different supplements like turmeric/curcumin, you have to be your own advocate.  Ask questions, if you do not like the answers, find a second opinion.

 

There is no one that can tell you what your expiration date is, except the One.  Do not read the internet as it is out of date.  As others will tell you, You are a statistic of One.  Each cancer is different, each treatment is different, and each person is different.

 

You are not alone as there are more ladies and caretakers on this site are here to support you and give you their stories.  Wishing you all the best. trish

 

Darla's Mom
Posts: 12
Joined: Oct 2017

Thank you Trish

I haven't yet found the national cancer institute or heard of any supplements to date.  I will definitely look at tumeric/curcumin.  Do you have any research you can point me to for supplements?

I am just learning to be my own advocate. Up until this past week, I thought I had no voice in how my treatment would take place. 

I love that tat. 

evolo58
Posts: 293
Joined: Dec 2017

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.

Darla's Mom
Posts: 12
Joined: Oct 2017

Thank you for responding. Your post is enlightening.  I didn't realiuze that the statistics and the patients they were measuring was so out of date.

Why the heck do professionals inform patients of this statistic when they know i the data is outdated without any explantion of the data behind it?  I have a much better perspecgtive. This is why my surgeon is optimistic. We may not be cured, but we will do everything to survive this.

 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I have Stage 4...

I had a fully hysterectomy Nov 2016 and 6 rounds taxol/carboplatin, 25 rounds external beam radiation to pelvis/abdomen, 3 brachy therapy treatments and and additional 30 rounds radiation to my neck along with 4 rounds of cisplatin...I had positive lymph nodes in my abdomen by my aorta and 2 positive lymph nodes in my neck near my corotid artery.

tomorrow I find out if the treatment to my neck worked...the area in my pelvis was clear in September

My radiology oncologist told me not to visit "Dr. Google" and to not look at statistics. He reminded me that the studies on there are old...that many women who get this are older than me (I am 53) and are not as healthy as I am.

One of my closest friend's mom had UPSC 20+ years ago and she was Stage 4. She's the healthiest woman I know. No reoccurance (and her story of her internal treatment is hair raising...).  I told my radiology oncologist about her and I said "I think she could stop an avalanche with her bare hands and cancer wouldn't dare mess with her again" and he said "and cancer will not mess with you again"...I believe him

and tomorrow I hope and pray with all my heart that he is right...

Darla's Mom
Posts: 12
Joined: Oct 2017

ckdgedmom  - You and I are the same age.  I will pray that you get good news on the success of your treatment today.

My surgeon is optimistic. It is the medical oncologist that was delivering the outdated statistic to me.  

evolo58
Posts: 293
Joined: Dec 2017

I am, too. I will raise (still another) bottle of water in your honor if you do. Really hoping this is fantastic news, and you can rest a little.

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

thank you so much

I.am.terrified.

But I trust my doctors and I have faith that what they did has worked...my doctor's name is Angel...how can I miss?

pinky104
Posts: 574
Joined: Feb 2013

You're not alone.  I was first diagnosed with UPSC (high grade serous adenocarcinoma, like yours) in the spring of 2010.  I had surgery and six rounds of Carboplatin and Taxol, which I finished in Sept., 2010.  I had some pain in 2014, and a mass was found in me that was too small to biopsy.  My GYN/onc watched it for a year with CT scans and a PET scan and decided that since it hadn't grown, it couldn't be cancer.  Well, this year it grew rapidly, wrapped itself around my ascending colon, and I had surgery and chemo again.  I started out with Carboplatin and Gemzar the first week, then did Gemzar alone the second week, and had the third week off, except for labs.  I had to have some of my chemo postponed because of low white blood cells, platelets, or hemoglobin, and on some visits I had to have lower doses.  On my next to last round, I had an allergic reaction to Carboplatin (the 11th time I had it over the years) and had to switch to Cisplatin and Gemzar in my final round.  I am again in remission.  My GYN/onc said I'd be lucky to have another 5 year remission, although the last one was almost 7 years.  I'm now trying Turmeric/Curcumin and taking Metformin although I am not a diabetic.  I was found to have 6 mutations in genomic testing done by Foundation One on the tissue that was taken out of me the last time I had surgery.  A member of this board, who knows a lot about mutations from reading medical journals, TakingControl58, told me that Metformin would work on 4 of them.  My PA at my family doctor was familiar with some of the studies on Metformin and agreed to let me try it.  I started it last week.  I hope it will keep me from having another recurrence or at least prolong the time until I get one again.  I'm one of the lucky ones who doesn't have a lot of symptoms when I get cancer so it tends to sneak up on me, but so far at least, I respond well to treatment.  We're all a bit terrified when we start out on this journey, but don't panic. You may get through it relatively easily. Not that it's all easy, but I expected so many more problems than I had.  Ask your doctor to give you Emend so you don't get nauseous, and that's a big part of the battle.   There are a number of stage IV survivors on this website. Good luck to you. 

Darla's Mom
Posts: 12
Joined: Oct 2017

Pinky104 - I am so sorry that we had to meet this way.  Your story is an inspiration to me. 

How were you able to get the genomic testing? Did you request this thru your oncologist or your family doctor? I am also going to ask about metformin.

pinky104
Posts: 574
Joined: Feb 2013

I requested the genomic testing through my GYN/onc.  At the time, he told me I couldn't be tested until I'd completed all my chemo for my second bout of cancer.  I was waiting for that to happen when I got a letter from Foundation One, the outfit that does the genetic testing, that made it sound like the testing was in progress.  It turned out he'd sent a sample of the tissue that was removed from me during surgery to Foundation One about three months after my surgery.  It costs $5,800, and I don't know yet if my insurance has paid for it, but Foundation One made it sound like they would probably pick up the cost if my insurance didn't. I know my insurance has rejected it at least once (and I have excellent insurance) and Foundation One was going to go through the process of resubmitting it.  I haven't heard any more.  Foundation One sent me a form to complete where I had to list my income when they sent me the initial letter. 

I hope the Metformin works for you (and me!).

takingcontrol58
Posts: 243
Joined: Jan 2016

Darla's mom,

I was staged with Stage 3, Grade 3 endometrioid adenocarcinoma in November 2014, after my hysterectomy. Two
months later, cancer metastasized all over my body (liver, spleen, vaginal cuff/outer rectum, nodules on lungs,
outer colon and spleen). This was before I was to start treatment. My husband was told I had 4-6 months to live.
You can read my entire story posted on January 10, 2016 (NED from Stage IV metatastic endometrial cancer).

I entered the trial "No time for cancer" mentions, a placebo or metformin with Taxol/Carbo- I had two chemo
infusions of Taxol/Carbo and met with my integrative oncologist-he immediately put me on metformin and I
removed myself from the trial.  Defintely talk to your doctor about getting on the drug. You don't need to be in
a trial to get on this drug and being Stage IV, you don't have time to lose. It is a miracle drug if 
you have the right gene mutations and health conditions that it targets. After one month, I went
from 34cm of tumors to 4cm. 5 months later I was completely cancer free and have been so ever since. It has now
been over 3 years. I remain on metformin today. Also, I never had any radiation treatment, just six infusions of
Taxol/Carbo. When I finished the chemo, I still had 2cm of tumors remaining, which vanished a few months later.

I highly recommend the first thing you do is have your surgeon send a tumor specimen to Foundation One for genomic
testing. It is good to do this when you are first diagnosed as cancer treatment mutates our genes and can cause new
mutations. It is so important to understand what is driving your cancer-  As you can see from Pinky's post it turned out that
metformin targeted 4 of her 6 mutations.  Metformin targets many of the mutations and health conditions that lead to endometrial
cancer. If you have mutations that metformin targets, you might be one of the lucky ones.  Metformin targeted 3 of my 4
mutations and I have remained in complete remission from a death sentence.  I'd be happy to analyze your genomic
testing report when you receive it. I have been researching this cancer for over 3 years now.

I also remain on 45 supplements that I began 2 1/2 years ago.  They were all recommended by my integrative oncologist.
A good book to get you started is called "Natural Strategies for Cancer Patients" by Russell Blaylock.  You will learn alot about
supplements and cancer treatment.  I started on DHA (fish oil) before starting the chemo- it is supposed to help prevent side
effects from the Taxol.  I never had any major side effects. You can also read the book published by my integrative oncologist
called "The Gene Therapy Plan" by Mitchell Gaynor.

I'll be happy to let you know the supplements I use but you should work with your own naturopath or integrative oncologist
to make sure you get the vitamins and supplements your body needs. Dr. Gaynor's book lists the key supplements he 
recommended for his patients with cancer- I'm on all of them but two.

You also need to be checking certain blood markers.  Vitamin D is critical and if you take metformin, you will need to
supplement with Vitamin B12, as it can lower levels of this important vitamin. Can you let me know any health issues you have?
This is what you have to focus on. All the things that led to your cancer- underlying health issues, gene mutations, diet, weight.
You have to work on getting your body back into balance. Focusing on a healthy, organic diet is one of the first things I did when
my cancer metastasized- organic fruits and vegetables and grass fed beef and organic chicken. Think clean food and purified water. 

I would also recommend you talk to your doctor about taking two low dose aspirins /day.  Aspirin reduces your chance of any
cancer by 25%.  I have also been taking two low dose aspirins along with the metformin.

You have to take control of your own health if you hope to survive advanced or metastatic cancer. You have to do
your own research. I can give you a list of many good web sites, some on integrative health and some from the standard
medical community. The best website is the site of the National Institutes of Health - www.pubmed.gov. This is where
they publish all the medical journal articles.  Doctors use this site only I don't think most of them really do all their homework.

Also, I don't believe you can ever cure cancer.  You have to heal cancer.  If you body becomes conducive for cancer to
grow, it will return, just like when we get a cold or the flu. You are never cured, but when your body gets run
down again, you get another cold. And your body heals again.  It is our own body that keeps us free of all diseases.
But it has to be in working order to do so. 

If you have alot more questions, you can e-mail me.

Takingcontrol58

 

 

 

 

Darla's Mom
Posts: 12
Joined: Oct 2017

TakingControl58 -  Your post gave me hope and terrified me at the same time. I had no idea this was so agressive. My chemo has been delayed due to my incision opening after they pulled the staples. How far has this spread while we are all waiting for my wound to heal?

I have a new medical oncologist I am meeting with on Monday and will ask to be put on metformin and low dose asprin. At this point, any potential effects from the metformin are greatly dimished by the potential for effectiveness with chemo. The surgeon is located in the same building and I will visit their office to discuss sending out a sample of the tumor to the Foundation One for genomic testing (if they still have it). Surgery was almoost 2 months ago.

My diet and weight are likely contributing factors. Lymphoma is the only family history of cancer. Up until the cancer/tumor diagnosis, I have had no health issues in my 53 years.

I would appreciate any informaton on supplements and any additonal links that you can provide.

Thank you so much for responding to my inquiry. 

takingcontrol58
Posts: 243
Joined: Jan 2016

I'm glad my post gave you hope- I didn't mean to terrify you.  But the best advice I can give to a cancer
patient is to take control of your health from the day of your cancer diagnosis.  And it looks like you are doing that.
I think it's important not to be rushed into treatment without understanding your options and all the risks
involved. You do have a choice.  You don't have to get all the treatments that are recommended for you: I didn't
take many of the treatments recommended for me. Also, I believe they say the ideal is to start chemo no longer than
eight or nine weeks after surgery.  

You mention your diet and weight are likely contributors. That was the case with me. Once my cancer
metastasized, I radically changed my diet and the weight started to come off. If you know that is an issue,
I would focus on this ASAP. This could help you more than anything if you think it may have led to your cancer.
Maintaining a healthy weight is one of the best things women can do to prevent a cancer recurrence.

I think we all know our own bad habits. A bad diet leads to excess weight whichleads to many conditions that can lead to EC. 
I would start on the metformin as soon as you can. What women aren't being told is that chemotherapy activates many of the
processes that can cause cancer and metformin targets these processes- like angiogenesis (creation of new blood vessels that
cause new tumors and metastasis) and the creation of cancer stem cells (which is why people become chemo resistant).
It is believed the chemo kills the daughter cells but leaves the cancer stem cells that go on to form new cancer. 
Metformin also targets cancer stem cells.

You didn't mention that you have diabetes- are you pre-diabetic or do you have insulin resistance?  If weight is an issue, is the
weight around your stomach? Have you had blood tested for insulin, insulin growth factor hormone, glucose and A1C? These are
all usually related to excess weight.  I had issues with all of them and metformin lowers all levels.  I also had very high cholesterol
which has come down about 70 points on the metformin.  As I've said in other posts, you have to determine the root causes of your
own cancer and treat those health issues. I would also test for ferritin (stored iron levels) which go up for women in menopause.
My were very high and I believe was the reason I was diagnosed with a Grade 3 cancer, very fast growing. I also test my hormone
levels regularly.

The doctor that brought me to remission died right before I was NED.  His last book, The Gene Therapy Plan, (by Dr. Mitchell
Gaynor), he lists the supplements he gave to his cancer patients.  I will list them below, but as he states, certain supplements
may be more important than others for a given individual.  That is why I would suggest you meet with a naturopath or find an ntegrative oncologist who is also an expert
in standard cancer treatment and completmentary treatment.  Here are the supplements my doctor recommended for his cancer patients:

Artichoke extract
D-limone
Magnolia extract
DIM
Maitake D Fraction
Shitake mushroom
Chaga Mushroom
Oil of Oregano
Vitamin D3
Skullcap
Balckseed (black cumin seed oil)
Bee propolis

I use all of these supplements except bee propolis and artichoke extract.
I would also recommend Bosswelia (Frankencense) and Curcurmin. Ginger is in the 
same family and is also a cancer killer.  I use that as well. Curcurmin targets some of the things metformin
does.
I also use Alpha Lipoic Acid which can prevent neuropathy, so you may want to use before you start chemo.
It helps raise the levels of glutathione in your body, the master anti-oxidant.

Some good web sites for integrative/natural medicine:
www.lef.org (the site where I first learned about metformin- excellent to learn about many health issues)
I learned about this site in Suzanne Somer's book Knockout, which is excellent. It got me on the road to
integrative cancer treatment.
www.mercola.com
www.thetruthaboutcancer
www.naturalnews.com

Some good web sites from the medical community:
www.pubmed.gov
www.statnews.com
www.medicalnewstoday.com
www.oncologynurseadvisor.com

It is important to read multiple sites to get a good idea of all perspectives.
You can also go directly to the websites of some of the cancer hospitals.

I too had no health issues before I was diagnosed at 58.  But it turns out I did have health issues-
high insulin, IGF-1, ferritin, that doctors were not testing me for.  You don't know what you don't
know, that it why blood testing is so important.  When you get cancer, you are not healthy.  I thought
I was healthy- I never got sick, but it turns out I had high levels of the things that cause cancer. At 
this point, I'm healthier than I have ever been.

Takingcontrol58

 

 

 

 

 

 

 

 

 

Darla's Mom
Posts: 12
Joined: Oct 2017

I can't thank you enough for this.

You gave me information that someone at my surgeon's office should have given me.  I am now enlightened.

I spoke with the new oncologist yesterday about putting me on metformin. She told me she would consider it and has since agreed.  At statge 4, there are no adverse reactions that would be worse  than the chemo and the oppotunity for improved response to chemo greatly outweighs any potential side effects. 

I will be going for a CT scan tomorrow. I pray the last 8 weeks have not allowed the cancer to grow. After my surgery, there was NED.

 

takingcontrol58
Posts: 243
Joined: Jan 2016

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

 

MAbound
Posts: 877
Joined: Jun 2016

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!

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

Takingcontrol58, Cancer itself mutates the genes, so I am wondering why you think there is a difference between mutation caused by cancer treatment ie chemo vs the cancer itself.

 

"I highly recommend the first thing you do is have your surgeon send a tumor specimen to Foundation One for genomic
testing. It is good to do this when you are first diagnosed as cancer treatment mutates our genes and can cause new
mutations."

takingcontrol58
Posts: 243
Joined: Jan 2016

Cancer does not mutate your genes.  Your genes mutate in response to hostile conditions in
your body caused by all types of things, like chronic inflammation, excess metals in your system,
dangerous chemicals (remember the movie Erin Brockovich?), too much of key hormones
(like estrogen and insulin growth factor) which are not in proper balance, too much glucose or
insulin and many other things. It is these gene mutations that can lead to cancer. I've read that
people with cancer typically have between 4-10 mutations. Or perhaps you are deficient in certain
vitamins and minerals so some of your internal body processes are not working properly.  We have to
have all the proper cellular building blocks. For example, being low in Vitamin D is usually found in many
patients with cancer. Vitamin D is involved in over 200 processes in our bodies, so if you are deficient,
things can go wrong. It is all about balance.  When your body is out of balance, problems happen. 

Cells mutate to survive. Only 5-10% of mutations are inherited. The rest are somatic which are changes
that happen over the course of your life due to your lifestyle and environment.

I believe it is key to do genomic testing with your original tumor specimen so you can better
understand all that is driving your cancer right from the start, especially if you are diagnosed with
advanced or metastatic cancer. But this is not the standard practice in the industry.  I had to ask my
surgeon to send in my tumor for testing. You need to address your gene mutations and your underlying
health issues, which could be driving the gene mutations. I believe this is how you heal cancer. Once
you know your mutations, you'll have a better idea of what is going on.

You have to determine the root cause of your own cancer.  There might be a targeted therapy you want
to try for example. I went on metformin which happens to target genes mutated in endometrial cancer,
though it is not considered a cancer drug. For me, it targeted the conditions that led to my cancer as
well as some of my gene mutations.  A supplement addressed another key driver of my cancer.
Perhaps you need to be on drug that targets your hormone levels, for example. You have to address
all that is driving your cancer, and chemo and radiation don't do that.  They are
just generic poisons that destroy everything in their paths, the healthy cells and the cancer cells and deplete
your body of all the nutrients it needs.  That is why supplementation is so important, so you replenish all the 
goodnutrients that are being washed away or destroyed. We all know the damage from these treatments because
of all the side effects.

Once you have chemo and radiation,  it is possible that your mutations may have changed or you have new ones,
because many chemotherapies and radiation work by mutating your genes, of both healthy and cancer cells.  This is how the
cancer cells supposedly die. These treatments don't just target cancer cells. We all know radiation causes cancer
and many chemotherapies are known carcinogens and cause new cancers. That is why if you have a recurrence,
you would have to do testing on the new tumor to see if the mutations are the same as the original tumor because
then your treatment might change.
 

Takingcontrol58

 

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

I need to ask my doctor more questions. I don't think that there was enough tissue from my first two endometrial biospies to do genomic testing.  The doctor who did the first biopsy told me that she took at least two or three samples, but what happened to them I don't knøw. My current doctor told me that there was nothing from my hysterectomy to test. My uterus was a calcified mass after chemo.

I am under the impression that different parts of the tumor can have different genomic defects. I just looked at the notes from my last appointment. I think the sample is from the tumor recurrence which is present in my vagina.My tumor was positive for PTEN & PIK3CA. The tumor is MSS --microsatellite stable.

Like you I am on metformin. I switched to the name brand, Glucophage XR, about six months ago. Glucophage is more consistent in lowering blood sugars than most of the generics. I have type II diabetes. I do my best to adhere to Dr. Richard Bernstein's 6-12-12 low carb diet--Diabetes Solution.

Good luck to you on your path.

evolo58
Posts: 293
Joined: Dec 2017

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

bluehyacinth
Posts: 45
Joined: Feb 2016

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. 

Darla's Mom
Posts: 12
Joined: Oct 2017

I can't express to you all how comforting it is to have you ladies here. I have felt so isolated since this journey begain. 

I will be praying for you all.

SF73
Posts: 276
Joined: Oct 2017

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. 

DKK
Posts: 8
Joined: Oct 2017

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

pinky104
Posts: 574
Joined: Feb 2013

I really don't understand what's going on with your treatment.  To me, it seems like your doctor's doing everything backwards.  Usually, they GYN/oncs remove as much as they can first and then try to kill off what they didn't get with chemo and then radiation on top of chemo if necessary.  A lot seem to do the sandwich treatment.  I don't know why, but my doctors skipped the radiation.  I'm not complaining about missing that step!

I had a little different attitude than most people on here did.  Most people say to think positively and you'll have more hope for a cure.  Instead, I expected the worst.  I figured I'd either end up getting what I expected or do better than expected.  I couldn't be too disappointed that way.  I just go with the flow, do what the doctors tell me to do for the most part (although I have skipped some of the recommended meds like Neulasta because of possible side effects). I have had one major reoccurrence, and the doctor seems to think I may have another in about 5 years (I was a stage IVb UPSC).  I'm trying Turmeric/Curcumin and Metformin this time around to see if they make any difference.  I don't use an integrative naturopath.  Probably some of the other girls on here can recommend one to you if you give them an idea where you live.  

It's too bad that you have to be going through this at this time of the year.  I hope all works out well for you and you have a much happier new year in 2018, once this all gets past you.  

evolo58
Posts: 293
Joined: Dec 2017

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
Posts: 8
Joined: Oct 2017

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!

 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

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

Jairoldi's picture
Jairoldi
Posts: 215
Joined: May 2017

My stomach tightened just reading this post. Here's to qualifying for a solid clinical trial with positive results!

evolo58
Posts: 293
Joined: Dec 2017

I truly, truly hope the immunotherapy trials help.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

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

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Please, let there be a trial to help you. Do you know when you're going to MSK?  I'll keep you in my thoughts. 

DKK
Posts: 8
Joined: Oct 2017

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 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Continued prayers...glad that you got some good news...

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I was so sorry to read your post, you must be terrified. I can relate somewhat: I started out at Stage III and actually grew new tumors while having chemo, then had radiation which worked somewhat, and am now waiting for more radiation...you get the idea. I think we all share your sense of horror at having one's body feel so out of control, so quickly. It's incomprehensible to anyone who hasn't gone through it, and surreal to anyone who has. When I'm panicked about my stage and prognosis I look at some of the other discussion boards here for inspiration. There are many, many people with different types of cancer at Stage IV who have had stable disease for years, or in a few cases even cleared entirely. It's a cliche, but true: you are a statistic of ONE. If you have the right genetic profile for immunotherapy, you may be in better shape that you can imagine right now. Best of luck and please keep us posted. B

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

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

evolo58
Posts: 293
Joined: Dec 2017

derMaus ... I take Stage 4s from other cancers into consideration as well. I might be wrong, but as I'm reading things, Stage 4s in general have the potential of causing all sorts of problems even years later, but it really does vary from patient to patient. My second-opinion doctor explained that even with UPSC or any Type II, there is no way a doctor can look at you and proclaim what your future will be.

I take some comfort ... maybe not much, but some ... knowing that many of the procedures, tests and treatments for other Stage 3s and 4s have filtered down to our little group, such as using C-125s as an initial test, neoadjuvant and sandwich treatments, improvements in chemo and radiation, robotic surgery, immunotherapy, etc. etc. While treatments directly for the Type II and more-aggressvie Type 1 endometrial cancers may seem slow and few, we are benefiting greatly from several general medical breakthroughs. I just wish there were more specific breakthroughs for the advanced-stage UCs, such as more ways to predict future problems and stop them BEFORE they become an issue. Actually, now that I think of it, that would help advanced-stages in general.

Subscribe to Comments for "Looking for stage IV survivors?"