Metastatic Stage 4...Clear Scan

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at614
Posts: 11
Joined: Mon Oct 27, 2014 4:47 pm

Metastatic Stage 4...Clear Scan

Postby at614 » Mon Oct 27, 2014 7:15 pm

Hello everyone!

I know this forum has been filled with so much sadness from the passing of beloved friends. My post isn't intended to take attention away from the mourning of those brave fighters. I just wanted to share my mom's story and attempt to remind even just one person to hold onto hope. I remember searching the internet for survivor stories, and maybe this one can make a difference in someone's life. For those of you who don't feel like reading, long story short: 48 year old female diagnosed with stage 4 rectal cancer, metastasis to the liver and lungs (twice), chemo, radiation, about 13 surgeries, anal fissure, paralyzed vocal chord,etc...4 years later, just got a scan last week showing no signs of cancer. :D

My mom was diagnosed when I was 18 so I was in college for this 4 year journey I'm about to tell, plus my parents were also trying to "protect" me at first by hiding as much as possible, so I apologize for not knowing the specific medical terminology and details of chemo, operations, etc. she received.

My mom was diagnosed with stage IV metastatic rectal cancer in 2010 at age 48. I remember her bringing home the portable fanny pack-looking bag she strapped around her shoulder, and it made a buzzing sound every time the chemo went through the tube. I don't know the name of this chemo, but it made her hands extremely sensitive, black, and shriveled. She had to wear gloves because the slightest touch of an object would be too cold. Her hair started falling out, and she had a lot of nausea and vomiting. I'd be awaken in the middle of the night by the sounds of her moaning and choking on her own puke. Sometimes she would just sit there on the sofa and stare off into space, her bony face suddenly white and blank, and I'd get closer to check if she was still breathing. She also had radiation. During this time, my mom continued to work. She just wore her gloves to work, and hid the chemo bag under a big jacket. In September, I was starting my freshman year at college so I wasn't able to be home for all of her procedures. She had a operation done to remove the cancer from her liver, sigmoidoscopy, laparotomy, coloanal anstomosis, etc.

The one I remember most clearly was her ileostomy. Oct. 2010 My dad picked me up from school to visit my mom at the hospital, and I mentally prepared myself by imagining my mom asleep in bed in an eerily quiet ICU. I'm still being haunted by the scene I saw instead. She was propped up on a chair, with her oversized gown flailing around as she thrashed her arms in the air. My mom was shrieking in pain with tears pouring down her face, and I lost count of how many tubes she was entangled by. Her piercing screams were interrupted with sudden gasps for air, and then more agonizing shrieks. As for the ileostomy itself, she actually became allergic to the bag so she got a rash around the stoma. At work, there were were incidents when the bag got overfilled, snapped open, or poured down her pants when she couldn't make it to the restroom. She had the ileostomy reversal a couple months later. Apparently the ileostomy didn't do its job or something, becase she had to go back into the hospital to reopen the same hole for another ileostomy/ileostomy reversal.

My mom's next scan showed that the cancer had mestasized to her lungs. This was now Oct. 2012. She had surgery to remove tumors from both lungs. She recovered quickly from the operation, despite having multiple scars where the surgeon sliced through her back and the side by her ribs. However, she had to restart chemo a week after she got out of the hospital. I remember this one being Irinotecan, and the hell began again. This chemo made her lose much more hair than the 1st chemo, and she was deciding whether to shave the rest of her head. Her face got very thin and skeletal, and all her bones were sticking out when I felt her body. She had extreme nausea, and could not even drink water for the chemo days. She went through a total of 22 rounds. This wasn't continuous; she began having low white blood cell counts so we needed Neupogen shots. Her doctor saw her side effects and diagnosed her with anorexia and depression, so that was great. :roll:

Oct. 2013, the scan results again showed cancer in the lungs, at the very spot the chemo was targeted. This time, they removed half of her left lung. The recovery for this lung operation was not so good. Her vocal chord got paralyzed during the procedure so she couldn't speak for a while. She had a lot of mucus and fluid built up in her lungs, making her get fatigued very easily with a lot of difficulty breathing. Up to this day, her voice is still not back to normal and she has to breathe a lot and gets tired if she talks too long.

Throughout all of this, my mom had the rectal issues I'm sure you are familiar with. Her bowel movements force her to stay in the restroom for 8-9 hours, sometimes throughout the whole night so that she could only attempt 1 hour of sleep before she gets up for work. I bring her dinner into the bathroom, and she has her meals on the toilet. The constant restroom use and pain resulted in an anal fissure. Although she altered her diet, some she starved herself so she can lessen the restroom time. No sleep, no food, and no rest (she continued to work these 4 years) made her very weak. There have also been other emergency situations at home where my mom suddenly has severe pain and needed the ER. There have been moments where she told me she wants to die, so that all of this can end. I haven't even mentioned the non-medical problems she had to deal with: I got disqualified of financial aid because of my mom's hospital bills, her "best friend" tried yanking off her wig in public, she was getting verbally abused at work, etc.

These are only snippets into the hell that was my mom's life for the past 4 years--her unbelievable battle cannot be fully portrayed by mere words. However, Oct. 2014, her scan showed no signs of cancer, age 53. If you saw her on the street, you wouldn't be able to tell how much she had suffered. She couldn't make it to my high school graduation, but she was cheering at my college ceremony. I didn't really know who to tell, so I decided this was the most appropriate place to vent a little bit and share a little bit of my mom's battle. It has been so hard for my family, and the good news finally arrived. I remember forcing myself not to have too much hope because that can be the very thing that destroys you. But for anyone who actually read this whole thing (first of all thank you,geez I didn't realize it'd turn out this long haha), please stay strong. If I may also share the following things I've learned. Whether you are the patient, caregiver, friend, or family...strength is as powerful as hope. Mentality makes a huge difference, and perseverance can be revealed at the most unsuspecting times. The negative people in your life, which includes non-supportive family, are a waste of time. Nobody has the right to tell you anything unless they've walked a mile in your shoes. Cancer shoes are very big to fill. It's okay to get bitter, resentful, and frustrated at the life you now have. But it's also okay to have faith that you can overcome it. Maybe the problem isn't overcoming it, but just getting through it. And that's the hardest part, but you'd be surprised how much determination one person can have. Don't give up.
4/2010- Mother Dx age 48 Stage 4 Rectal Cancer
Mets to liver, lymph nodes
Liver surgery
Radiation
Chemo
10/2010 -Ileostomy
Ileostomy Reversal
2011-Ileostomy again
Ileostomy reversal
2012-Mets to lung
Chemo x 22 treatments
2013-Mets to lungs
Lung resection of upper lobe of left lung
Vocal chord paralyzed after operation
Anal fissure
Abdominal hernia
Oct 2015- NED!

Stanfordmom
Posts: 613
Joined: Wed May 14, 2014 1:32 am

Re: Metastatic Stage 4...Clear Scan

Postby Stanfordmom » Mon Oct 27, 2014 10:29 pm

At 614,

Thanks so much for sharing such an incredible story! Your mom is truly a hero!! She gave me hope!

I am so happy for your mom's clear scan results. Enjoy your family time!!

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Metastatic Stage 4...Clear Scan

Postby NZJay » Mon Oct 27, 2014 11:21 pm

It sounds like your mother has had a truly horrific cancer journey, and I congratulate her on staying strong and reaching NED status. Long may it continue.

And you're obviously a very caring child, considering the detail in which you were able to relate her story. She's lucky to have you.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

Easyflip
Posts: 27
Joined: Tue Aug 19, 2014 10:57 am
Facebook Username: Richard Jue
Location: Oakland, Ca
Contact:

Re: Metastatic Stage 4...Clear Scan

Postby Easyflip » Mon Oct 27, 2014 11:40 pm

You're both heroes. Congratulations to your family especially your mom. Thank you for posting, hope and inspiration are the silver lining to this horrible disease. What a strong woman!
56 yo dad and husband
3/13 stage 3b crc 1/23 lymph nodes pos
4/13 colectomy 2' of colon removed
11/13 finished 12 rounds Folfox
1/14 lymph node false alarm
3/14 declared NED
7/14 1.6 cm liver met found with pet/ct stage 4
9/14 liver resection surgery

User avatar
singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Metastatic Stage 4...Clear Scan

Postby singingholly » Mon Oct 27, 2014 11:43 pm

Honour to your mom, your family and you. You just had a trip to hell and then came back alive!
This is so joyful and powerful for us all.
Thank you so much for sharing! You made my day... and my week also! ;-)
The gratest hug to you and mom.
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

NedPlease
Posts: 538
Joined: Fri Mar 23, 2012 3:56 pm

Re: Metastatic Stage 4...Clear Scan

Postby NedPlease » Tue Oct 28, 2014 12:39 pm

Your post brought me to tears. I am so happy for you and your mom.
I think you're right about strength and your strong mom is surely proud of you.
My best,
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
Today- NED

Valorie
Posts: 365
Joined: Mon May 05, 2014 6:33 am

Re: Metastatic Stage 4...Clear Scan

Postby Valorie » Tue Oct 28, 2014 12:50 pm

Your mom is a warrior. You have honored her strength and courage by sharing her story with us. Thank you.
Age 53 dx 2a CC 0/21 LN Oncotypedx score: 11
Sigmoidectomy 5/8/14
MSS No lymphovasular involvement,
6/14 PET - NED, 12/14 CT NED, 7/15 CT - NED
6/14-12/9/14 Xeloda 8 cycles
2/12/15 incisional hernia repair - Boooo!

at614
Posts: 11
Joined: Mon Oct 27, 2014 4:47 pm

Re: Metastatic Stage 4...Clear Scan

Postby at614 » Sat Nov 08, 2014 6:45 pm

Wow, thank you so much everyone! I wasn't expecting any replies and it meant a lot to me that you took the time to read and respond with such thoughtful and kind words. I showed my mom and and she was also very touched as well. When she read my post, she cried from the memories of these tough times. The sad part is that despite my lengthy story, she said this had only covered half of the suffering she endured.

We're wishing you all much better quality of life, joyful moments and laughter with friends and family, the strength to overcome daily hardships, and the achievement or continuance of NED!
4/2010- Mother Dx age 48 Stage 4 Rectal Cancer
Mets to liver, lymph nodes
Liver surgery
Radiation
Chemo
10/2010 -Ileostomy
Ileostomy Reversal
2011-Ileostomy again
Ileostomy reversal
2012-Mets to lung
Chemo x 22 treatments
2013-Mets to lungs
Lung resection of upper lobe of left lung
Vocal chord paralyzed after operation
Anal fissure
Abdominal hernia
Oct 2015- NED!

AngelaN
Posts: 206
Joined: Tue Jan 28, 2014 9:00 pm
Facebook Username: angelamnicholas

Re: Metastatic Stage 4...Clear Scan

Postby AngelaN » Sun Nov 09, 2014 9:20 am

Love hearing stories like this. Gives us all hope.
DH diagnosed with Stage 4 CRC Nov 2013
11 tx Folfox/Avastin; LAR/liver resection/introp RF of liver - May 2014
3 treatments FOLFIRI
Lung resection - Sept 2014
FOLFIRI + Avastin x 10 treatments
Avastin+5FU q3 weeks x 4
SBRT x 1 lung met
RFA for remaining 3 in Oct and Nov
SBRT for liver met Jan 16
lung mets growing
Enrolled in NIH TIL trial Oct 16
XRT for lung met 12/16
Cells didnt grow for TIL trial Feb 17
Waiting for NCT03085914 at Penn

hart2hart
Posts: 785
Joined: Wed Nov 23, 2011 10:46 pm

Re: Metastatic Stage 4...Clear Scan

Postby hart2hart » Sun Nov 09, 2014 9:24 am

What a lovely word........"CLEAR!"




Julie H
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - To Current

at614
Posts: 11
Joined: Mon Oct 27, 2014 4:47 pm

Re: Metastatic Stage 4...Clear Scan

Postby at614 » Tue Nov 18, 2014 12:06 am

Thank you! :D
4/2010- Mother Dx age 48 Stage 4 Rectal Cancer
Mets to liver, lymph nodes
Liver surgery
Radiation
Chemo
10/2010 -Ileostomy
Ileostomy Reversal
2011-Ileostomy again
Ileostomy reversal
2012-Mets to lung
Chemo x 22 treatments
2013-Mets to lungs
Lung resection of upper lobe of left lung
Vocal chord paralyzed after operation
Anal fissure
Abdominal hernia
Oct 2015- NED!

stars9979
Posts: 135
Joined: Fri May 02, 2014 11:06 pm

Re: Metastatic Stage 4...Clear Scan

Postby stars9979 » Wed Nov 19, 2014 4:58 am

THANK YOU

You both are warriors and such inspiration. Love to see this and hear this and I wish continued NED status, and my mom and I hope to join you some day :)
Caregiver to 54 y/o mom
Dx April 4 2014
Stage IV CC w mets to liver
Illeostomy (temp) 05/05/2014
6 rounds FOLFOX 05/14-08/14
Primary tumor/colon resection/I'll take down 10/27/14

Peabody5422
Posts: 334
Joined: Fri Dec 09, 2011 10:21 am
Facebook Username: debbie.whitaker

Re: Metastatic Stage 4...Clear Scan

Postby Peabody5422 » Wed Nov 19, 2014 12:34 pm

Thank you for sharing. I am just starting down this long road for the 2nd time and this just me hope. I just got clear scans being Stage IVB. I know this is just a calm before the storm and your Mom's story really helps us all going forward.

I hope your life is beautiful and full of hope. Tell you Mom: Way to GO!!
DX: RC 11/11 T1 N1c MX
Surgery: LAR 12/23/11
Rad & Xeloda: 1/12 - 4/12
Clean CT: 4/12
Reoccur: Lymp 4/14 4 new locations. 2 Aortic, 2 locations Rectum
Chemo to start: 6/14, OXI, Advastin, 5FU
10/14: One tumor left - on Avastin only
Surgeries: 4/15, 7/15 and 8/15 :last tumor w/Illeostomy then Ostomy
NED by 7/15 Surgery

at614
Posts: 11
Joined: Mon Oct 27, 2014 4:47 pm

Re: Metastatic Stage 4...Clear Scan

Postby at614 » Thu Nov 27, 2014 11:56 pm

Thank you for reading and a special thanks to those who have replied; your comments make me smile and I've been re-reading them many times to stay positive. Hope you all had a relaxing and happy Thanksgiving!

at614
Posts: 11
Joined: Mon Oct 27, 2014 4:47 pm

Re: Metastatic Stage 4...Clear Scan

Postby at614 » Sat Feb 28, 2015 8:30 pm

Another clean scan :wink: (stage 4 rectal cancer with metastasis to the lymph nodes, liver, lungs; chemo, radiation, 12+ surgeries, etc). Have a great day!


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