Possible for long term remission with only chemo?

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Robino1
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Re: Possible for long term remission with only chemo?

Postby Robino1 » Fri Mar 09, 2018 4:03 pm

Orlar and Recruiter,

I am determined to live life as if I will be around for a very long time. :twisted:

I just had a dark moment when I started this thread. But I do think the question needed to be asked.

Thank you all. :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Possible for long term remission with only chemo?

Postby mhf1986 » Fri Mar 09, 2018 6:22 pm

Yes, questions need to be asked! What makes this cancer so tough, so different? Why can we put other types into remission or cure and not this one YET? What is being done to move research forward more quickly? Is there a cure waiting around the corner but it will just take a west coast doctor and an east coast researcher to talk to each other one day?

After DH's surgery 17 months ago, my father told me to concentrate on the battle, not the war. It is tough to do that but we try. Win today, win tonight. Then we'll figure out the next day.

Hugs,
M
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

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bitchslapped
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Location: PNW/USA

Re: Possible for long term remission with only chemo?

Postby bitchslapped » Fri Mar 09, 2018 7:54 pm

mhf1986, Your father is right. That's why there are no losers in the war w/cancer. Patients are knocked down so many times, get back up & go @ it again. So many battles, victories are won along the way by the patients. All winners & champions in my eyes.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

behconsult
Posts: 229
Joined: Fri Jul 04, 2014 4:53 pm

Re: Possible for long term remission with only chemo?

Postby behconsult » Sun Mar 11, 2018 9:05 am

Robino1 wrote:Or am I doomed to die?

This is weighing heavily on my mind lately. I constantly hear cure can only be achieved by cutting out the cancer. In my case, HIPEC would be my only solution to cutting out the cancer or do I have any other options to research?

HIPEC is only successful in a very small percentage.

So, is it possible to reach long term remission by chemo alone? Thinking about chemo for life... my hands are truly not liking that option.

When the beginning of this latest journey had me at 12 sessions of chemo, I was naive and thought cancer would be gone by then and I'd resume my life. HA! What a dope I was. I've just finished 16 and I don't see an end in sight.

God I HATE this disease. So much pain and angst that we all go through. Losing loved ones, facing the possibility of dying. Seeing so many fight so fucking hard but not winning.

When will they finally get a handle on this???? Hell, there has been no cure for any disease since Polio. Are the drug companies really that greedy?

Sorry for the rant. I'm truly curious if it is possible to go into LONG term remission through chemo only...



Dear Robino1, If I may share and push the envelope as a fellow BRAF V600e MSS. Are you doomed to die? Yes. But you don't know what from or when. It may not be cancer but maybe a meteor, auto accident, or some other event. Timing? Lord knows. I too have entertained the thoughts you mentioned. I remember leaving the Cleveland Clinic from a second opinion, driving down the highway crying think, "I'm gonna die" after a really fatalistic appointment with an oncologist. I then burst out into laughter, as despite the second opinion I really didn't know anymore than I did before the appointment. I don't know what will end my life or when. Don't be afraid to hope, have faith and have gratitude.

My docs have me on chemo for life. I entertain getting off chemo at the five year point possibly. Breaks are good and just missed a one week cycle. I plan on break of one cycle per quarter plus summer time break of a month. Very nice and helpful. The field of immunotherapy is powerful and growing everyday. There is hope. Like my struggle; try not to let thoughts about your future contaminated your here and now experience. You are surrounded by miracles constantly.....look for them. Peace and Blessings sent your way.

PS It does suck sometimes...
Stage 3B Age 52
T4; 2/16; spot on perit
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to three spots- Collapsed lung/chest tube 5/17. One more spot to go.

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Robino1
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Location: Florida

Re: Possible for long term remission with only chemo?

Postby Robino1 » Sun Mar 11, 2018 10:46 am

Thank you for the much needed pep talk.

We have a couple of things coming up and I'm trying to figure out scheduling of chemo. I definitely am pushing one session back a week.

Fun times! ;)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Lee
Posts: 5741
Joined: Sun Apr 16, 2006 4:09 pm

Re: Possible for long term remission with only chemo?

Postby Lee » Sun Mar 11, 2018 4:56 pm

Robin, I am so sorry you are going through this. Please know there have been much advancement in this past decade, in the past many decades. Many years ago, mid to late 1970"s, a good friend of mine, her dad was diagnosed with rectal cancer. From what I understand his only symptom was weight loss. The first 20 pounds he was happy about, it was the next 20 pounds that got his attention. They did exploratory surgery and found his tumor. He woke up with a bag. He started chemo, but died 6 months following his diagnoses.

When I was diagnosed almost 14 yrs ago, I was given anywhere from 30% to 50% (depending upon who you talked to) of being alive in 5 years. I believe the same diagnoses today is around 75% to 85% of being alive in 5 yrs. FOLFOX was brand new and a game changer. I believe Immunotherapies will be the next big game changer. Have you looked into that?

Have you read Celine's journey? Here is her link if you have not read it yet. She is NED today thanks to immunotherapies.

viewtopic.php?f=1&t=49736

There is a Colontalk Facebook page that is by invitation only. Have you checked that out? I am not a member, butt might be worth checking out if you have not already done so.

Good luck, thinking of you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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Robino1
Posts: 463
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Re: Possible for long term remission with only chemo?

Postby Robino1 » Sun Mar 11, 2018 7:27 pm

From what I understand, immunotherapy is for a different mutation than what I have.

I'm still fighting and getting through one day at a time. Hopefully, I'll still be around for the breakthrough. :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

lovelife789
Posts: 114
Joined: Thu Aug 24, 2017 5:28 am

Re: Possible for long term remission with only chemo?

Postby lovelife789 » Sun Mar 11, 2018 8:16 pm

I have read a lot since my diagnosis.
I believe I have read at least 3 stories of people reaching long-term remission relying on just chemo. I remember them well because I was told I may have to do chemo for life.
There's hope! I know it's hard, it's very hard. On some days you just feel bone tired of everything, but try to take everything one thing at a time, live everyday one day at a time.

Best of luck!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

caregiverinSD
Posts: 2
Joined: Sun Mar 11, 2018 10:55 pm

Re: Possible for long term remission with only chemo?

Postby caregiverinSD » Sun Mar 11, 2018 11:01 pm

I registered just so I could reply to this post. My husband was diagnosed 1 year ago at the age of 39 with stage 4 rectal cancer. We have three kids, ages 7 and under (that baby was only 12 months at diagnosis). No family history or other risk factors. My husband had one tumor in his liver and at least one tumor in his lung (that lit up on PET). He began his treatment with 6 weeks of chemo/ radiation, then cyberknife to the lung met, then 6 cycles of Oxi + Avastin, then permanent colostomy surgery with liver resection. Surgery outcome: no sign of cancer, pCR. He's now wrapping up the "last" 6 cycles of Oxi + Avastin. It's been a hard, hard year but here we are, one year later and by all measures, NED. Who nows how long this will last but I wanted to reply and let you know that sometimes body chemistry, cancer, and treatment line up just right to produce NED status. There is always hope.

rp1954
Posts: 1393
Joined: Mon Jun 13, 2011 1:13 am

Re: Possible for long term remission with only chemo?

Postby rp1954 » Mon Mar 12, 2018 6:22 am

Robino1 wrote:Or am I doomed to die?

That's exactly what my wife asked the night before we went to the hospital for her second surgery, kind of getting cold feet. That was almost 7 years ago.

HIPEC is only successful in a very small percentage.

I don't think they do a very good job on the monthly monitoring and (immuno)chemo side of follow up tx. I did (or would) replace them in a heartbeat.

So, is it possible to reach long term remission by chemo alone?

Dr Edward Lin showed a bunch of stage IV and recurrent mCRC patients whose median OS went somewhere beyond 94 months while on daily capecitabine and celebrex alone. Still lots of missed opportunities there with other mild ingredient add-ons, especially the KRAS/BRAF mutant related ones.

The issue is to intensify the cancer treatment without corresponding increases in side effects. This is primarily possible for us with selected nutriceuticals, mild drugs, and more frequent, improved bloodwork.

Thinking about chemo for life... my hands are truly not liking that option.

(Some?) IV vitamin C patients appear to do much better with Xeloda side effects, without the tissue breakdowns. Ditto other nutraceuticals. Incidentally, IV vitamin C is an active component in treating KRAS/BRAF mutant cells, the best kill or improvements when combined with (daily) 5FU and other adjuvant nutraceuticals in high potency doses and effective forms.

When will they finally get a handle on this???? Hell, there has been no cure for any disease since Polio...I'm truly curious if it is possible to go into LONG term remission through chemo only...

Many good, partial answers have been hitting us in the hands for the last 25 years. Almost no one wants to pay attention and do much of anything about them, patients included. Many medical industry segments are outright resistant to potential improvements that have negative economic dimensions. The Matsumoto related papers imply that most stage 2 and 3 CRC patients, with substantial BRAF mutant cells present at pathology, were cured, -able after a year of oral 5FU chemo and cimetidine, starting two weeks after initial surgery. No RC radiation either, but better surgery. Several Japanese papers showed cimetidine + 5FU helped unresected stage IV patients somewhat for several kinds of GI cancers beyond 5FU alone, but they obviously needed better+more treatment modes and ingredients. We found, targeted and added some of these other ingredients, added an extra surgery, and used better, more biologically logical "treatment rules".
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

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mypinkheaven
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Re: Possible for long term remission with only chemo?

Postby mypinkheaven » Tue Mar 13, 2018 1:14 pm

Robino1 wrote:
mypinkheaven wrote:

This 5th round coming up will be just before an already planned trip. Going north for oldest grandchilds hischool graduation party. So blood wrk will be taken, Avastin and one push of 5FU, no pump this time. No Oxi so I don't have side effects for the time I'm gone. 10 days of relative normalness (is that even a word?) ;)



Why just the 5FU bolus/push? 5FU is the least toxic chemo when given over a long time like the 46 hour pump. 5FU stays in the body for a very short time, so the bolus is gone within an hour (probably much less time). 5FU is cell cycle dependent, so it works on cancer cells during mitosis. Having the 46 hour pump would allow the 5FU to get to many more cancer cells. My past oncologist said the 5FU works on about 5% of cancer cells in the 46 hours. That's not much, but it can add up. Common sense tells me that the bolus would work on many fewer cancer cells. I may be wrong on some of this, but this is my understanding.


I don't know why my oncologist just did the push of 5FU. I remember I told her I didn't want the oxaliplatin just before traveling the next day. We flew out that Friday, I had the appointment that Thursday just before flying. Maybe she did it just to get something in my system.


Well, that makes sense. I didn't realize you were leaving the next day. You couldn't be on the pump unless you're one of the lucky ones who can disconnect themselves. I have to make an extra trip to get disconnected after the two days. 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

mariane
Posts: 635
Joined: Sun Sep 13, 2015 6:16 pm

Re: Possible for long term remission with only chemo?

Postby mariane » Tue Mar 13, 2018 4:20 pm

Robino, I don't know whether you have ever read TimUK posts. In my opinion he chose the very wise road with his treatment and was doing good when he posted last time. I strongly believe that we should take more modern approach to the cancer and treat it according mutation status. Tim chose the best way from what I am aware is available for his particular mutation. From what I know your status looks similar to his. I think it might be beneficial for you to read his story and maybe contact him?
Best of luck!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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betsydoglover
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Re: Possible for long term remission with only chemo?

Postby betsydoglover » Tue Mar 13, 2018 4:32 pm

I am sorry for your situation. I am honestly not sure if chemo only can cure peritoneal mets. See my signature, Chemo alone eliminated my liver met - 12+ years. I had a lung recurrence in 11/08 and for that I did have VATS in 2009, plus Xeloda / Avastin. I have at this point been almost 9 years NED and chemo free.

Good luck and take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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Robino1
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Re: Possible for long term remission with only chemo?

Postby Robino1 » Tue Mar 13, 2018 7:30 pm

Mariane, I did read his posts. :)

Betsy, I am so happy that you have been able to eliminate that liver met with chemo alone.

I am in a better frame of mind than when I started this thread. I truly thank all of you that have responded with the amazing pep talks!!!

You all ROCK!! :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Possible for long term remission with only chemo?

Postby Shana » Tue Mar 13, 2018 10:27 pm

Robino1 wrote:Mariane, I did read his posts. :)

Betsy, I am so happy that you have been able to eliminate that liver met with chemo alone.

I am in a better frame of mind than when I started this thread. I truly thank all of you that have responded with the amazing pep talks!!!

You all ROCK!! :D


Robin,

So glad to see that you're feeling better. It was a good post, lots of comments and feelings and opened up needed conversation so thank you for just putting it out there.

Have you taken the trip to see grandson graduate yet? Chemo brain is my excuse for losing track of stuff on here and in life general!

Hugs,

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...


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