Stage IV Colon Cancer on the ROAD TO RECOVERY

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JessieJ
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Joined: Fri Jun 10, 2016 11:31 am

Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby JessieJ » Fri Jun 10, 2016 1:18 pm

Writing this, because I know that there are people out there going through the same thing, and I know that with the right treatment, discipline and a strong social support system, WE CAN ALL BEAT COLON CANCER.

My mom (52 years old) was diagnosed last March this year (2016) with Stage 4 Colon Cancer. It all started when she was going to have her 1st colonoscopy that same month only for us to find out that she has a rectosigmoid mass. There was a note of an irregularly shaped, friable mass, almost completely obstructing the lumen at 15cm from the anal verge. Multiple biopsies were taken. Further insertion of the scope was hampered by the mass.

CBC levels were normal. Nothing out of the ordinary. Also Creatinine & Sodium/Potassium levels were normal. Colorectal cancer was not systemic - was not found in the blood. Upon Chest Xray, Lung fields are clear. Heart is not enlarged. Everything is intact. Although at that time my mom was really coughing like crazy, it was productive but no phlegm came out.

We thought it was just a benign, huge mass at the time that could be removed and everything would be okay right away.

But once the mucosal biopsy results came in, that's when we found out that it was indeed colon cancer. The surgical pathology report's final diagnosis was Adenocarcinoma, Moderately Differentiated. In a more gross and microscopic description, the specimen consists of few cream soft to friable irregular tissue fragments with an aggregate diameter of 0.7cm. Block all.

Since these were the initial results from the colonoscopy, we decided to have a CT Scan done for my mom.

CT Scan of the Whole Abdomen Impression:
Sigmoid Colon Mass (Biopsy Proven Adenocarcinoma) with enlarged regional lymph nodes. Peripherally enhancing hypodense masses in the adnexal regions may also represent large lymph nodes and ovarian masses. Posterior cul-de-sac ascites. Multiple enhancing hypodense nodules in the liver possibly METASTASIS. Non enhancing hepatic nodules may represent cysts. Renal cortical cyst(right). Small umbilical hernia. Thoracolumnar spondylosis. Subsegmental atelectasis vs parenchymal fibrosis, BOTH lower lobes.

I know all the results from the CT scan are quite hard to understand, but one thing's for sure - METASTASIS, ATELECTASIS, ASCITES, MASSES & CYSTS aren't good news.

It was quite funny that the doctor advised her to NOT eat fruits and veggies, as it is bulk forming. But instead, she should eat rice, chicken, meat and drink milk. I thought to myself - WHERE COULD SHE GET THE NUTRITION SHE NEEDS IF SHE DOESN'T HAVE FRUITS AND VEGGIES, and I even read that drinking milk multiplies the bacteria in your system even more! I was so furious upon hearing all this.

For days we were so dumbfounded, felt really depressed, we did not know what to do. We were desperately searching and trying to find ways to get all of these conditions out of my mom's system.

I love my mom very much. Nobody wants people they love and people who are very dear to them to ever get sick, not even a little cough and colds. :( I really wanted it all gone, the moment I found out. A.S.A.P.

But I came to my senses, things like this don't just progress overnight, so it will be a long shot for these things to get cured overnight. I had to be patient.

I read something about the wonders of NATUROPATHY. Alternative medicine with the use of herbal medication / keeping a natural healthy, raw, diet.

Given that there was a blockage / obstruction already, we did not want to cause any more harm or worsen my mom's condition. So with my mom's discipline and courage, we decided to consult a naturopath and start JUICING. Pineapples, Carrots, Broccoli, Kale, everything I searched that would be healthy for my mom. "Juicing was the key to making my mom strong and for the cancer to go away", I said to myself.

The naturopath we went to also gave several medications all natural and safe. Nanotech. A drink/cup of one of his concoctions was equal to a basket of fruits/veggies, which is exactly what my mom needs, more nutrition for good cells, and starvation of the cancer cells.

Also brought my mom to the beach a lot, oxygen/fresh air helps a lot with good sleep and cell rejuvenation. My mom became stronger and stronger. No more cough, no pain whatsoever. I was pretty happy with the results.

But it was almost the end of the month of May, when my mom started having stomach cramps, and high fever - as high as 39.4. Everything was so sudden because my mom was perfectly fine the day before. No signs whatsoever that she was going to have fever and stomach cramps the next day. I was so scared. I didn't know what to do. Her pain scale was 9 out of 10, 10 being the highest/most painful. The pain went away, but came back intermittently.

We then decided to go to a medical doctor since the pain was not going away and mom was having trouble walking already.

He said that the operation (colectomy) had to be done soon to remove the mass, it would be a smart move, because if we didn't push through with the operation, sooner or later, the colon could be completely blocked, and my mom would be in extreme pain and emergency surgery would be done as well. In a few days, mom was ready for the operation. Mind & Body were both ready, I think that really is the key to having surgery like this, both your mind & body have to be ready for stuff like this. I, on the other hand, was at wits' end. But I remained positive, blocked everything negative, and prayed, like I always do. God, in truth & in fact, can heal any kind of sickness, whatever it may be. I believe so.

Blood tests were made, at this time my mom was very dehydrated, she barely drank anything, even water because she was too afraid for her stomach to act up because the pain she felt was excruciating.

On the day of the surgery, it took a few hours, it felt more than that though. Finally, the long wait was over. My mom was in the recovery room! :)

Turns out, there was more than just a tumor. There was a pelvic abscess forming pus and building it's own wall already. The doctor said it was extremely dangerous if it ruptured. He also said that my mom is very strong because her body was so controlling, the infection was only localized, just in the pelvic area only. They were able to completely remove the pelvic abscess/infection without harming the other organs. If any other person had this with a weak resistance, it would have led to peritonitis, or worse, SEPSIS. They were successful enough to remove the pelvic abscess and put on a permanent colostomy bag.

Which brings me to the conclusion that naturopathy did help, it was needed. But when there is a blockage or an obstruction, something must definitely be done.

One thing that bothers me though, is that they were not able to remove the tumor - it's still there. But the pain of my mom is no longer there (only from the cut/surgical incision which is currently healing really fast) and as well as her trouble from excreting feces/defecating, it is also gone. I am still thankful. The doctor said it would have been too aggressive of a treatment if he dug deep and removed the tumor after removing all the pelvic abscess. My mom could have gotten too weak or maybe not even make it. So I believe it was a crucial call for him, but he made the right decision.

My mom is looking healthy & feeling healthy. She finally gets to eat normally, consuming small frequent meals, healthy meals to get her nutrition back up in no time. I feel blessed. Our family feels blessed. God is good.

We do not want to go for chemotherapy, as we all know its negative immunosuppressant effects, killing the GOOD, HEALTHY CELLS along with the cancer cells. I'm not sure if Radiation is an okay option, either.

My question is, what do you think is the best cure for shrinking tumors along with eradicating all cancer cells? I would appreciate hearing success stories such as ours. Also, tips on how to take care of a permanent colostomy would help. Our family is new at this but one thing is for sure - my Mom is on the ROAD TO RECOVERY.

KEEP THE FAITH, EVERYONE! :)

Nik Colon

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby Nik Colon » Fri Jun 10, 2016 6:52 pm

My question, why didn't they do surgery right away with blockage? I can't and won't give advice on all natural cures as they don't exist. Not trying to be negative, but most people here will tell you the same. I do send my best wishes that things turn out good, but I would highly consider chemo.

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Bev G
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Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby Bev G » Fri Jun 10, 2016 8:40 pm

In my opinion, stage IV colon cancer mandates chemo. Is chemo difficult and somewhat of a mixed blessing? Of course, butt inadequately treated stage IV cancer is worse. Good luck. Try not to force decisions that could prove very, very costly to your mother.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Soccermom2boys
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Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby Soccermom2boys » Fri Jun 10, 2016 8:51 pm

Hi JesseJ--

I also don't want to advocate the no chemo route just because I truly feel cancer is something you don't fool around with, but at the end of the day that is a decision for your mom to make. What really caught my eye in your post was the tail end regarding help for a permanent colostomy. I am almost six months out from having one myself. Certainly wasn't what I wanted, but it is what it is. I wanted to tell you that there is a forum for ostomates and it is such a wonderful group of people (just like here on Colon Talk) who have ostomies and you can post questions and no doubt someone will reply and help your mom out. I can't say enough how much I recommend you and your mom check it out. It is UOAA.org (United Ostomy Associations of America)

Best of luck to your mom. Not going to lie, chemo was no fun, but it was doable and while it does kill off the good cells with the bad, I taught at a high school the entire time I did my chemo and never caught a cough or a cold. Don't completely shut out that option, have an open mind.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

kandj
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Joined: Sun Sep 27, 2015 11:29 am

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby kandj » Sat Jun 11, 2016 9:37 am

JessieJ wrote:My question is, what do you think is the best cure for shrinking tumors along with eradicating all cancer cells?



Chemo. Chemotherapy is how you shrink tumors and eradicate cancer cells. While other natural methods might help with building body and mind in a healthy manner, they will not kill cancer. Doing just that will unfortunately kill your mom. Chemo sucks, it makes you sick, it reeks havoc on your body, it is awful. But, it kills cancer cells. It prolongs life. It, coupled with surgery, cures.

Sure, add in the natural stuff to supplement your moms health, but do not forgo proven science to do so. You talk about praying and believing God can heal. I believe that too. But I believe that one of the ways God does that is by providing medical professionals, scientists, and medicine to achieve his healing.

There is a pretty good parable about a man that gets caught in a flood:

A man was trapped in his house during a flood. He began praying to God to rescue him. He had a vision in his head of God’s hand reaching down from heaven and lifting him to safety. The water started to rise in his house. His neighbour urged him to leave and offered him a ride to safety. The man yelled back, “I am waiting for God to save me.” The neighbour drove off in his pick-up truck. The man continued to pray and hold on to his vision. As the water began rising in his house, he had to climb up to the roof. A boat came by with some people heading for safe ground. They yelled at the man to grab a rope they were ready to throw and take him to safety. He told them that he was waiting for God to save him. They shook their heads and moved on.The man continued to pray, believing with all his heart that he would be saved by God. The flood waters continued to rise. A helicopter flew by and a voice came over a loudspeaker offering to lower a ladder and take him off the roof. The man waved the helicopter away, shouting back that he was waiting for God to save him. The helicopter left. The flooding water came over the roof and caught him up and swept him away. He drowned. When he reached heaven and asked, “God, why did you not save me? I believed in you with all my heart. Why did you let me drown?” God replied, “I sent you a pick-up truck, a boat and a helicopter and you refused all of them. What else could I possibly do for you?”

Don't ignore the help God has already laid out for your mom.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

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Annemiek
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Location: The Hague, Netherlands

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby Annemiek » Sat Jun 11, 2016 2:14 pm

Sorry to be the pain in the proverbial ass, but I doubt if your mum is on her way to recovery. If the tumor is still there, it will continue to grow and spread mets.
The abcess was not the culprit, it's the tumor and that's still there.

I understand that you are scared and spooked and I'm really sorry for your mum and you and your family, but I agree kandj, chemo might give your mum some more time. A strong immune system will help her get through chemo more easily, it will not cure it!


I wish you and your family all the strength to make the decisions that are right for your mum.




Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

Joannerogers
Posts: 260
Joined: Tue Jun 16, 2015 4:50 pm

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby Joannerogers » Sat Jun 11, 2016 4:16 pm

According to my oncologist the treatment for a possible cure is chemo and surgery. A healthy diet will help but it probably won't cure. Chemo is really not that bad considering the alternatives. In my case chemo was a walk in the park compared to the surgeries I had, but it is truly different for everyone.
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby crazylife » Sat Jun 11, 2016 10:45 pm

Agree with everything said. Throw everything you can at it. Surgery, chemo, good diet, exercise. And maybe some supplements after chemo to help build the immune system. But relying on something natural to cure this is not gonna work.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

Felicitym23
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Facebook Username: Felicity Malyszko

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby Felicitym23 » Tue Jun 14, 2016 1:59 am

We do not want to go for chemotherapy,


I am surprised that you say this. Its not your body and you are not a Dr or God to be playing around with another persons life.

Sorry I was told I wouldnt need chemo.... Within 4 weeks of having the turmour removed the cancer had spread. I chose chemo and I am still alive.
Also with the juicing thing. I was so sick there was no way my body could handly such huge amounts of juicing. It would have just been diahroea. Especially straight after having my operation.
47yrs and mother to a 12 year child with autism
Cancer confirmed 9/23/15
Ext right hemicolectomy 10/13/15
35 Lymph nodes & 6 cancer told Stage 3C.
Nov 15 Oxy, Leucovorin, Flurourcil
CT and PET Scan told that cancer was now in abdo & neck lymph nodes.
STAGE 4 told two days before Christmas 2015.
Oxy, Leucovorin, Flurourcil & Panitumumab
MARCH 2016 NED - currently in remission. Stage 4.
After 3 sessions of Vectibux.
PET & CT SCAN July 16 - Still NED but still on chemo and Vectibix.

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby Pita » Tue Jun 14, 2016 4:16 am

I'm fairly new at this cancer thing and have done a lot of research prior to starting chemo. Sure maybe a few people have beaten cancer with a natural remedy but they are few and far between, more like a miracle happened. I am not going to sit around and wait for a miracle, I want to live! Chemo is the way to go, it's a proven fact that the majority of time it kills the cancer cells. Best do some more research.
My best to your Mom and family...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

JessieJ
Posts: 4
Joined: Fri Jun 10, 2016 11:31 am

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby JessieJ » Wed Jun 22, 2016 8:31 am

Thank you for all your enlightening opinions.

We just learned about this new treatment called IMMUNOTHERAPY. What's your take on this type of treatment?

Thanks! :)

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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby DK37 » Sat Jun 25, 2016 8:57 am

Hi JessieJ,

You ask many big important questions - I'll try to start with a very general answer and then follow-up with specifics once I learn more about your Mom's medical situation. I am not a medical doctor but I am a PhD cancer drug discovery researcher with 20+ years experience. You'll see many of my posts here as DK37 in the hyperlink in my signature line - most focussing on immunotherapies which I believe very strongly in as the eventual treatment protocols for CRC.

Re: chemo vs. immunotherapies - to make that decision point you need to know your Mother's "MSI-status". So it is a VERY HIGH PRIORITY to find out that info - all treatment decision flow charts at major cancer centers now will be based upon it.

If she is MSI-high: then major cancer centers are putting many of those patients on PD(L)1 immunotherapy clinical trials since the response rate is so high. Two columns I wrote on this (the first for the CRC advocacy orfg "Fight Colorectal Cancer" and the second a personal more detailed column:

http://fightcolorectalcancer.org/resear ... -patients/

https://adventuresinlivingterminallyopt ... ies-vol-1/

If see is the "MSS" (the opposite of MSI-high) - in that case the tumors are much more resistant to immunotherapies. There are a number of immunotherapy trials where they are attempting to get immunotherapy activity against this type of CRC and the first success (in preliminary small trial data, currently being confirmed in a large Phase 3 clinical trial) was just announced a few weeks ago:

https://adventuresinlivingterminallyopt ... estigator/

Although I can't give medical advice to a particular situation since I am not a medical doctor, in terms of overall strategy for MSS CRC what I as a patient (and most doctors advise) is to use current chemo protocols to stay alive while MSS immunotherapy research rapidly goes on in the background. As a patient, I plan to eventually switch to an immunotherapy, but as of right now I am chosing to "tread water" with chemo although there is one trial I did try to get onto last Fall (the NIH TIL trial that has a huge thread here on Colon Talk):

https://adventuresinlivingterminallyopt ... ome-water/

Please do ask follow-up questions that you have and the best of luck to your Mother,

-DK
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

hmschaef
Posts: 4
Joined: Fri Feb 26, 2016 1:31 pm

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby hmschaef » Mon Jun 27, 2016 11:12 am

I have enjoyed following your blog and very encouraged by your recent posts about the news coming out of ACOS, specifically for MSS/KRAS mutated cancers. We just learned this morning that TAS-102 is no longer working and are beginning to look at trials. NCT01174121 and NCT01697527 are sticking out, especially since NCT01174121 seems to have recently re-opened. The combination therapy for NCT02788279 looks so promising, but the randomized study with the 3 different arms worries me, knowing he is not guaranteed to receive the combination therapy. With them skipping Phase II and straight to Phase III, how fast could this potentially be accelerated through the FDA and approved for standard treatment? Any other trials that are notable to potentially look into? We are trying to move quickly but there is so much information to get through....Thank you in advance for thoughts.
Caregiver to my amazing dad!
8/14 - Stage IV CRC diagnosed
9/14 - Surgery to remove colon tumor and spleen; confirmed peritoneal carcinomatosis (PC) and liver mets
10/14 - Started Folfox
12/14 - Folfox failed after first CT
1/15 - Folfuri w/Avastin started
2/15 - Avastin removed after blood clot
11/15 - Folfuri failed - progression of liver mets and PC, but no new growth
2/16 - TAS-102 failed after first CT - slight progression of liver mets and PC, no new growth
Current - Exploring clinical trials

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DH2Sleen
Posts: 81
Joined: Thu Jan 29, 2015 10:10 am

Re: Stage IV Colon Cancer on the ROAD TO RECOVERY

Postby DH2Sleen » Mon Jun 27, 2016 11:55 am

hmschaef wrote: NCT01174121 and NCT01697527 are sticking out, especially since NCT01174121 seems to have recently re-opened.

Hi hmschaef, The NIH TIL trial (NCT01174121) is open and accepting applicants. The key to this trial is that they stick to the exclusion criteria closely, so read them over to see if something does not align with your dad's condition. I know of a couple of patients who were rejected for heart problems. Also, it does not specifically say so in the write-up, but they are looking for an easily resectable tumor or tumors that are at least 2 cm in diameter. They need enough tumor material to grow the TILs from as well as tumor for genetic testing. We have seen them reject people with tumors under 1.5 cm or larger tumors in hard-to-get places. Best locations seem to be periphery of lungs, liver, or lymph nodes, but I think other locations may be acceptable.
I don't know if you have seen AkaSleen's blog about her experiences: http://www.cancerriot.blogspot.com. It details her experience with this trial.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
9/2013 colectomy
10/2013 - 3/2014 FOLFOX
4/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
3/2015 enter TIL trial @ NIH
7/1/15 Receive 148E9 cells to target K-ras G12D mutation
8/11/15 Reduction=18%, no new tumors
9/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
1/26/16 46% but one suspicious met
3/24/16 46% but one growing
4/7/16 Lung lobectomy NED for the first time
3/3/20 Still NED "cured"


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