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In the recurrence club now

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

My CT scan this week (done in response to a spike in my CA-125) showed multiple nodules in both lungs and a mass on the outside of my colon. My medical oncologist is calling it a systemic recurrence and says that there's now no chance of a cure or long-term NED. I'm having a biopsy this week for genomic testing; that should help identify the best chemo or immunotherapies. While that is being done, I will probably have two rounds of chemo--probably Carbo and Taxotere (can't have Taxol again because of my neuropathy)--and another CT scan.

What is especially scary is that a scan three months ago showed no cause for concern, so this has come back quite ferociously. I've had a pain in my right side for about a week and I'm sure that's the tumor. My abdomen is not too swollen but I can tell there is more fluid there. This is the first time I've dealt with physical discomfort from the cancer itself, rather than from the treatments. When I think about dying from cancer I've always thought about the suffering caused by all the interventions that come at the end, not pain from the disease itself.

So this is serious now. I've had several days to process the news and am largely used to the idea that my life is not going to be what I hoped it would be, even when I was in treatment. My family and friends have been so supportive; with my family, it's understood that every day we have together is precious, and no one has to say it.

My question for ladies who've been in similar situations is whether anyone has seen significant reduction of tumors like these from additional chemo or from other treatments.

While my oncologist was talking to me, she kept saying "You're not there yet," meaning that there are still treatments that we can try. But in her accent it sounded more like "You're not dead yet." I still laugh when I think about that.

I'm so glad I have the people on this board to talk to now.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Becca, what you heard her say, "you're not dead yet," is true and don't you forget it! There are so many new and effective treatments that living WITH cancer is becoming the new norm - just like living with diabetes or any other chronic disease.

I am sending out all the positive vibes I can muster to help you stay strong and hopeful as you and your medical team find the right treatment for you. Hang in there and please know that we're all rooting for you! Kim

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Stay strong Becca. We are all with you.  

EZLiving66's picture
EZLiving66
Posts: 1462
Joined: Oct 2015

I am so sorry, Becca. This is the reality we all live with but it seems there are new treatments coming on the market all the time. And, although there's not a cure yet, Kim is right. This can be treated as a chronic disease. I tell our son with T1 diabetes to stay strong because you want to be ready when that cure comes. 

Love, 

Eldri

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

never seemed more appropriate.  Becca, your post reminded me of a woman I met at a Cancer Survivorship forum a few years ago, right after I was diagnosed.  She had been in treatment for 12 years.  12 years!  And she was the most vibrant, articulate, spirited woman in the room. Her cancer kept coming back, but she kept on living her life despite that.  So while it's possible you may never reach long term NED, that doesn't mean cancer has won.  So stay strong, stay hopeful, and when that's hard to do, know that all of us are here to be strong and hopeful for you.

Chris

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Thank you for this, Chris!

dgrdalton's picture
dgrdalton
Posts: 149
Joined: Jun 2017

Chris, you are so right! My cousin has been battling mestatic breast cancer for 5 years and she is the most positive upbeat and inspiring person I know right now!

Becca, positive thoughts and prayers for you!

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

Becca, this isn't the news anyone wanted for you! We actually don't want any new members in the recurrence club, and I'm so sorry to have you join us. That said,  I do question your doc's opinion that there's no chance of a cure or long-term NED. I'm not understating the seriousness of the situation, but I find that prognostication to be to be rather premature. When I'm feeling down, or panicked, or can't see the way forward, I wander around the other forums and have found a LOT of people who are/were Stage IV and long-term NED, or even 'cured'. I bookmarked some of them to revisit when I need inspiration, which is often. I'm glad you're having geonomic testing and hope you can consider a live tumor assay as well. We love you and we're here for you in every way possible. Hang tough, you'll feel much better when you have a new treatment plan going. Best always, B

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Oh Becca, I am so sorry.  I do think the ladies have raised excellent points and we are all here for you.  Hugs dear one!

oldbeauty
Posts: 289
Joined: May 2012

Although I don't have the same diagnosis as you (I am endometrial adenocarcinoma Grade II), I am in the third round of treatment for a second recurrence and was first diagnosed 12 years ago.  At my first recurrence, in 2012, there were nodules scattered across both lungs.  They were not biopsied but I was started on 400 mg daily of Provera (medroxyprogesterone acetate).  Subsequent scans showed shrinking tumors and by January 2015, I was NED.  I continued on the progesterone until December 2016 when the second recurrence was found and I began my first experience with chemo (Carbo/Taxol).  This time again with the nodules and no biopsy.  I still have 2 treatments to go but the nodules are gone except for one that tiny is still shrinking.  So, there are avenues to explore.  I wonder if progesterone would work for you and/or whether they can throw in some Metformin for you with the Carbo/Taxo (that combo plus Metformin is the subject of an endometrial cancer trial that has been posted in another discussion here).  It's great that you are getting genomic testing, raising the possibility of targeted therapy.  And perhaps surgery is a possibility.  I hope you will continue to share on the board, both to impart valuable info to all of us but also to reap the positive energy that is found here.  Best wishes.  Oldbeauty

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Oh, Becca,  I am so sorry to hear this.  This is a club I have belong to for a long time now.  There is hope in this club.  New treatments are always coming, maybe already here.  There are several immunotherepy treatment in trials, Match trials, and others.  I have been on treatment for recurrence for over 3 1/2 years and I have many more good days than bad.  It is not the live I had immagined, but it is still a good life.  I have been able to welcome and cuddle four great grand babies.  My husband and I have been able to travel between treatments.  Some times have been hard, but the good days make up for those.

Hugs and prayers, Lou Ann

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

I got this same news last year and am still in roughly the same place with treatment.  I decided to just live every day I get to, and hopefully get past the danage done by treatment.  BTW I also have abdominal pain and it is excruciating, I sympathize with you greatly on that one.  You are in my prayers.

Gardena
Posts: 102
Joined: Jan 2016

Becca, you are a bright light on this board and I know we are all sending you strength and prayers. I hope the biopsy goes smoothly and good treatment info is garnered. If immunology is offerred, please consider it. I have been on Opdivo (Bristol Meyers) going on 8 weeks and it is working for me. True, I have not had a scan since starting tbis treatment, but I am completely pain free and have no more swollen lymph nodes. I guess what I'm saying is, there are treatment options for reoccurance that work and I pray the right one is found for you. Keep the faith and remember, you are stronger than you know! Lots of love and light coming your way. Gardena

Sandrine04
Posts: 76
Joined: Nov 2016

I am also in the same situation.

I am reassured to know that there are other treatments than chemotherapy. Chemotherapy is no longer an option for me

The doctor told me about hormone therapy ...

Me too I will have biopsies for a targeted treatment.

 

takingcontrol58
Posts: 263
Joined: Jan 2016

It is unfortunate that your oncologist is telling you there is no chance of a cure or long term NED. They have
no idea of your fate. That is in God's hands.  It is ironic that your doctor said you have a systemic disease now- cancer
is a systemic disease from the start but doctors treat the tumors, not our entire body system.  If you treat cancer as a
systemic disease from the start, I think you have a chance of healing your cancer.  That is what I did. You have to determine
what is making cancer grow in your own body and treat the cause. You will have to do the detective work as the doctors don't
care how you got cancer, they just give you more cancer drugs for the tumors.

If you haven't read my complete story, I first posted on this web site on Jan 10, 2016- (though my journey began August 2014).
entitled "NED from Stage IV metastatic endometrial cancer."  I too was Stage 3, Grade 3 (I believe the grade is more important
than the stage, as Grade 3 is fast growing). I was endometrioid adenocarcinoma Grade 3 which has many similarities to serous
carcinoma if you read the medical journals. My cancer was very aggressive and advanced 2 months after my total hysterectomy.
I had cancer all over my body, including my liver, spleen, vaginal cuff/outer rectum plus nodules on my lungs, spleen and outer
colon.  I began taking metformin one month after I started chemo (Taxol/Carbo). In two months, 88% of all my tumors were
gone and four months later I was in complete remission.  That was August 2015.  I've been in complete remission since then.
I did not have external radiation or brachytherapy, only 6 infusions of chemo. Personally, I believe I did much less damage
to my body so my immune system was able to recover quickly, though my immune system never dropped low- never had to
take Neupogen or Neulasta.

 
Cancer returns because you have not addressed the source of the growth.  Chemo kills "daughter" cells but does not kill cancer
stem cells that go on to cause metastasis.  Metformin kills cancer stem cells.  For me, metformin lowered my insulin and glucose
levels, which were fueling my cancer, as I was insulin resistant. My high levels of insulin caused one of the key mutations I had
which is found in 80% of all endometrial cancers.  I also had very high levels of iron (ferritin). Iron causes cancer by causing
DNA damage (oxidative damage) which is why taking antioxidants is so important. Every cell needs iron to divide, and cancer
cells divide very rapidly, so you are feeding the cancer.  Menopausal women are at increased risk for high iron levels.
Chemo also causes oxidative damage.

I'm glad you are getting genomic testing now- though it should be performed as part of the initial staging process so you better
understand the entire "systemic" picture of what is going on. I'd be curious to know what your mutations are.  Metformin addresses
some key pathways in the body that are frequently mutated in endometrial cancer which is why it is proving to be so effective
for our type of cancer (which carries alot of insulin receptors). I think it should be given to all endometrial cancer patients, just
like Tamoxifen is given to breast cancer patients to address estrogen levels.

I also take 2 low dose aspirins a day- reduces chance of all cancer by 25%- it should be discussed with every cancer patient.
I also take 44 different supplements every day.  You have to keep the body in balance so it works properly. Many supplements
have many anti-cancer properties. You have to attack cancer from many directions; cancer drugs play a small part.  The most
important thing to remember is that it is your own immune system that kills cancer. So it is very important to boost your
immune system with supplements and a healthy, organic diet.

Remember one thing about scans.  Cancer doesn't grow on the schedule of our scans- that goes for colonoscopies and mammograms.
That is why I get very comprehensive blood tests every 3 months. Things show up in the blood much sooner. I put
more faith in blood tests because you can watch the trends.  CA125 does not give you the full picture of what is going on in your
body. You also need HE4 for endometrial cancer, plus there are many more tests that will warn you of a march to cancer. 

I'd be happy go dive into more detail with you if have more questions.

Cancer has made me healthier than I have ever been in my life as it forced me to address all the underlying
health conditions that led me to acquire cancer.  I believe that is why I have remained NED.  It will be 3 years
in August since I began my journey.  The radiologist who performed my liver biopsy at MSKKCC told my husband
he estimated I had 4-6 months to live.  I may visit him in January, 3 years from when I saw him to show him
I'm alive.  More doctors need to understand that people can survive late stage cancer.  Maybe then they wouldn't
tell all us late stage cancer patients that there is no hope.  I believe a miracle happened to me and I am very grateful for it.

There is a great book I've recommended  before on this site- "Cancer is not a Disease" It's a Survival Mechanism, by Andreas
Moritz.  Others may disagree with his theory,  but I think this explains what cancer really is.  It is what happened to me.
Once I understood this, I lost my fear of cancer as perhaps it is not out to kill us but to save us from all the damage we
have done to our bodies.  Remember, not everyone gets cancer. Those of us that get cancer must have alot of internal damage
in our bodies. Cancer is there to sop up the mess.

Takingcontrol58

 

 

DaughterSue
Posts: 24
Joined: May 2017

Hi, Your post is very informative. You really do your homework! What is metformin?  I know I could probably it up, but I think you'd explain it better. How does a person take it? Pill? 

My mom is stage 1, but grade 3 serous. Just finished chemo and radiation 2 weeks ago. She goes for her 1st check up on July 10th. She's 78. I'm just being proactive. Thank you so much. Sue  

takingcontrol58
Posts: 263
Joined: Jan 2016

Metformin is the most prescribed diabetes drug in the world. It regulates, glucose and insulin, and is typically given to people with
diabetes, pre-diabetes (that was me) and PCOS (polycystic ovarian syndrome).  It also happens to have about 20 anti-cancer
properties.  It targets many processes and pathways involved in the cancer process (yet the medical community continues to
try to develop more expensive drugs for cancer patients and not tell their patients about metformin). In fact, there are not 
successful cancer drugs today that do what metformin does (with limited side effects). It is not FDA approved specifically
for cancer but can be prescribed off-label (almost every chemo drug is prescribed-off label,meaning it is prescribed for a
condition for which it was not officially tested and approved). It is a pill, generic drug and cheap.

All the medical researchers and the good doctors are well aware of its benefits for cancer.   It is also believed to be a anti-aging
drug- to prevent you from getting cancer,  heart disease and alzheimers until late in life. It may even increase your life span
to over 100.

Thousands of medical articles at www.pubmed.gov (website of the National Institutes of Health).

Takingcontrol58

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1725
Joined: Jun 2015

Becca, so sorry to hear your news! Stay strong and remember we are all here to help lift you when you need it.  I agree with what the other ladies have said.  Please come back and let us know what your path forward is going to be. Sending you loads of support and positive energy!

Love and Hugs,

Cindi

Nellasing
Posts: 529
Joined: Oct 2016

This was hard to find waiting.  I agree with all our sisters and hope you can feel the tidal wave of love and hope coming toward you.  Many (((HUGS)))

DaughterSue
Posts: 24
Joined: May 2017

You have many, many people praying for you!! I truly believe in miracles Smile

janaes
Posts: 800
Joined: May 2016

Becca.  I was sad to hear your news but I believe in you!!!!  Your a fighter I know it.  We are here for you dont ever forget that.  Look at al the responses you got.  You are truely loved.  My thoughts are with you. 

Soup52's picture
Soup52
Posts: 904
Joined: Jan 2016

Becca, I'm so sorry. There is some good advice from many who have been battling this for many years. My prayers are with you:)

Red Corvette
Posts: 114
Joined: Jan 2016

So very sorry to hear this news about you. Mrs. Red and you were diagnosed and finished treatment about six months apart and we remember your inspiring posts. You are a strong warrior who will get through this setback and survive and we will all walk along with you where ever the road takes you.

Red

 

 

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Thank you for all the words of encouragement. Your stories do give me hope, oldbeauty, Lou Ann, henhill, and takingcontrol.

Tomorrow I have the abdominal needle biopsy and I'm feeling like a baby about that--even though one thing I've learned through this process is that I can tolerate such things and won't remember the details afterward.

I've been having some trouble breathing since yesterday, so that's worrisome. Not really bad, but it hurts a little to take a deep breath. Time to focus on taking one thing at a time.

Peace and strength to you all.

ConnieSW
Posts: 1543
Joined: Jun 2012

good luck today. I'll be thinking about you. 

janaes
Posts: 800
Joined: May 2016

Thinking and praying for you yoday

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Thinking of you, Becca.

 

Nellasing
Posts: 529
Joined: Oct 2016

Thinking of you as you have your biopsy today.  You are strong and you will do it all one day at a time.   (((HUGS)))

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Ditto 2.  Rebecca, I've been thinking of you all day and sending you good, peaceful thoughts.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1725
Joined: Jun 2015

Becca, I hope your biopsy went well today. As you can see... we all have been thinking about you and sending you loads of love and support. Please let us know how you are doing when you feel up to it.

Love and Hugs,

Cindi

MAbound
Posts: 1096
Joined: Jun 2016

I am so sorry to hear that your instincts were right and my hope that what you were feeling was just leftover issues from treatment proved wrong. I hope that I didn't come across as trivializing your concerns; I just didn't want to believe that a recurrence could happen so quickly for you. It just feels so unfair when frontline treatment fails for any of us because it's such an achievement to get through it. To have to face more...... oh, boy. Hoping that your recovering ok from the biopsy and that it helps with determining which direction your treatment goes in next. I so want it to be more effective this time. Sending you a big, big hug!!

Pat

Beebster
Posts: 20
Joined: Feb 2017

An update on my experience for Beccabtown and others who may be on the recurrence sleigh ride,

I've posted elsewhere about my background, so briefly: Stage1B, Grade 3 (mixed histology, including serous, which makes it a serous dx), TAH November 2015, six rounds paclitaxel/carbo, 3 brachytherapy. Treatment ended May 2016. Clean scans in Dec. 2015 (post surgery) and in June 2016 (post treatment). Normal CA-125 (9) in October 2016. December 2016 scan showed large peritoneal tumor, smaller tumor, lymphadenopathy and mets in and on my liver. CA-125 was 177. An immediate PET CT confirmed cancer (my onc was shocked). No biopsy, assumed to be endometrial. So, yes, it came on quickly and ferociously.

Treatment was six rounds of pegylated doxirubicin liposomal plus carboplatin, a round every four weeks. Which stretched to 5 weeks, then six weeks, then eight weeks as my poor bone marrow struggled to meet that minimum ANC number, even with reduced chemo dosages. I started in December 2016, finished the six cycles in June. Had a March CT mid-way through, which showed that the liver mets had resolved as had the lymphadenopathy. The large tumor had shrunk significantly. It was at this point that I added Metformin to my regimen. My most recent scan at the end of June showed no radiographic evidence of disease. My CA125 is holding steady at 31 (I'm not happy with this as it was around 7 to 9 for the several months before recurrence).

My onc expected the chemo to "knock it back", but he is (very) surprised at how completely the cancer has "resolved". He cautioned me that my cancer is not gone, "we just can't see it". We all expect it to return, but when is anybody's guess. No therapies for now, my bone marrow needs to recover.  I am on monthly blood work (including CA125 and HE4), and I will have another CT in two months. That two-month CT is what tells me how quickly he expects it to come back, given how quickly it came back before. Stats say that in general, you get about half the remission time with each successive treatment. But, I am a statistic of 1, and who knows what the Metformin may be doing for me! We have not yet discussed what the next step will be when (and if!) my cancer returns. My molecular profiling indicates that PARP inhibitors may be useful, assuming I can get access. I know a couple of women with Stage IV ovarian who are on long-term PARP meds- four years and longer - as part of a clinical trial. So there's a lot of hope and good news there. Vaccines are on the brink, other immunotherapies, plus different drug delivery vehicles to more effectively target solid tumor cells while protecting your healthy cells. Lots going on. Will these be available for me if needed? I'm thinking I'll be around!

In the meantime, I have my beloved husband, who with a Parkinson's diagnosis reminds me, with a smile, that while I'm currently showing NED, his brain is continuing to be shredded. We clutch each other AND our labrador retriever, and huddle for a few minutes. Courage. One foot in front of the other. Deep breaths. Ativan as needed.

One other thing: I experienced minimal side effects from this chemo regimen. A bit of neuropathy in my feet, added to the original neuropathy from frontline treatment. A queasy stomach on days 3-7, but never any full-blown nausea or vomiting. No mouth sores, no hair loss. No real fatigue, but some occasional  "lead leg" feeling. No hand/foot syndrome. My CRNA says I'm unique among their patients, with virtually no chemo side effects. I did lose my hair with my frontline paclitaxel. I feel great, have beaucoup energy, have worked through all of this. Hard to believe my neutrophils are having the trouble they are. I urge them forward, too.

Nellasing
Posts: 529
Joined: Oct 2016

Good to hear from you and so glad things are looking up with your treatment- so very sorry to hear about your hubby!  I'll keep you both in my thoughts and prayers.  (((HUGS)))

Soup52's picture
Soup52
Posts: 904
Joined: Jan 2016

Prayers for you Beebster. While I'm not in the reoccurrence, my husband has Parkinson's too along with prostate cancer, so I feel your pain. We all must soldier on:)

pinky104
Posts: 574
Joined: Feb 2013

I've gotten way behind on my reading on this site after my vacation.  Your case sounds similar to mine.  Please see my new thread of 8/1 about my progress.  It should give you some hope.

christine8822
Posts: 41
Joined: Mar 2016

Just wondering how you are doing since you posted back in early July. Thoughts and prayers. 

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