Dang 1cm Liver Met!

Please feel free to read, share your thoughts, your stories and connect with others!
Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Dang 1cm Liver Met!

Postby Cmac1275 » Tue Sep 11, 2018 8:12 am

teacher2017 wrote:I wish you all good positive thoughts and all the luck in the world. Yes, cancer doesnt play by the rules. But I also think that with close monitoring we have a fighting chance to beat it out or at least back. I hate all of this and I miss my carefree life. They say stress is bad for us but I still can not seem to figure out how to not worry about cancer. This new normal is not something I’d wish on my worst enemy. Years ago I was asked if you could choose a different problem from a bowl of problems and return yours, would you? And I said no. Today I’d say yes. I’d trade this with something else.


Yeah. I'd trade for a different problem if I could.

One thing that has really helped me find peace is focusing on what I can control. About a month ago, my wife and I went to Charleston, SC for vacation. Someone recommended we check out the Charleston Tea Plantation tour. In their gift shop, I stumbled upon a book called "Cancer Hates Tea" by Maria Uspenski. She's a 10+ year cancer survivor herself and accredits her healing and survival in part to the many health benefits of drinking good quality tea. I've never been a tea drinker. Ever. But needless to say, I bit and bought the book. That was the first time I seriously began to consider the potential benefits of integrative therapy. I realized that diet, exercise, cancer-fighting supplements, meditation....these are things I can control. And there's plenty of evidence that suggests these adjunct approaches can be really helpful in preventing / fighting cancer or increasing the efficacy of traditional systemic treatments.

So for three weeks now, I've been drinking loads of green tea every single day. I exercise more. I've started making changes to my diet. And next week, I will be brining a list of known cancer-fighting supplements to my oncologist. Either she helps me integrate a mix of these into my daily regime or I find an integrative oncologist that will. Being proactive and opening up to new information has helped me feel less vulnerable. Especially when I consider that there are more tools in the toolbox that my oncologist never even brought up. And for what it's worth, every since I started introducing some of the changes I mentioned above...I've been feeling great. That goes a long way.

Good luck with your upcoming resection. I know it will be a success.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

teacher2017
Posts: 209
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Dang 1cm Liver Met!

Postby teacher2017 » Thu Sep 13, 2018 7:10 pm

Ok resection done! I’m still here! I was sent home after a day. I was walking and eating on my own so they said I could recoup at home. Completely laproscopically and the surgeon said all looked clear via the internal ultrasound.
I plan on being very careful and really taking care of myself. I agree that we have to control what we can control. I will do my best.

I am currently looking up the benefits of using Tagamet after surgery to stop reoccurrence. If anyone knows anything on the subject, please chime in.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18

Eleda
Posts: 196
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Dang 1cm Liver Met!

Postby Eleda » Fri Sep 14, 2018 3:35 am

Hi teacher, I began it a week prior to surgery and continued to now, I'm mid neoadjuvent chemo
RPGUY Is more educated in this than I
I'm sure he will chime in,,,
There are many studies done on this and TBH, u have nothing to loose and all to gain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4268104/
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

Re: Dang 1cm Liver Met!

Postby heiders33 » Fri Sep 14, 2018 4:20 am

FWIW, my integrative care doctor at MSK, Dr Gary Deng, does not recommend Cimitidene. He said this: “Don’t use cimetidine. Only risks and no benefit. It is a drug known to potently change other drugs’ metabolism, either increasing side effects or decreasing effects.” I’m sure that RP and others here would disagree, and I don’t know what studies Dr Deng is basing this on.

So impressed that you went home after one day! I hope I can go home quickly after my resection next week.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

User avatar
Atoq
Posts: 324
Joined: Wed Oct 25, 2017 9:31 am

Re: Dang 1cm Liver Met!

Postby Atoq » Fri Sep 14, 2018 10:10 am

teacher2017 wrote:Ok resection done! I’m still here! I was sent home after a day. I was walking and eating on my own so they said I could recoup at home. Completely laproscopically and the surgeon said all looked clear via the internal ultrasound.

Congratulations! It sounds like it was an easy surgery, have a nice recovery :)

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6
19.11.18 clear coloscopy

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Dang 1cm Liver Met!

Postby rp1954 » Fri Sep 14, 2018 12:49 pm

heiders33 wrote:FWIW, my integrative care doctor at MSK

So far, MSK integrative medicine has yet to impress me, mostly based on two other individuals. It was (is?) originally headed for a long time by a politicized, weak or non-STEM PhD who was once openly and notoriously anti-supplement, who simply didn't have any evident (bio)chemistry background to have much of a technical opinion. For myself, I put them in the hesitating, "weak tea" or window dressing category, vs more eclectic, marker driven, industrial strength recommendations.

“Don’t use cimetidine. Only risks and no benefit.

Totally misses the Asian literature that shows two uses: first, the all important perioperative use, and second, a potent daily immunochemo use with one of the best discriminating companion marker sets available, (tissue based CA199/CA242 + CSLEX1) - cimetidine not indicated for the other 1/3rd of advanced CRC patients that are not positive for both, per Matsumoto(2002).

I've never met a doctor that knew about the cimetidine - companion marker usage. If you don't read the instructions, I don't see how such people can expect to have the best result.

It is a drug known to potently change other drugs’ metabolism, either increasing side effects or decreasing effects.”

Actually I view interaction as a design consideration, misstated as a one sided negative. In our case, we focused on finding things with additive benefits to maximum cimetidine doses for the first several years. As far as I can tell about my wife, it improves 5FU performance, whereas we definitely had greater problems with common folic acid content. Cimetidine is fairly likely to have more problems with irinotecan and it's nausea and digestive problems; also guys often can't tolerate as high a dose as women. We found enough alternative drugs and options to do without oxi-, iri- and bevaciumab (Avastin) and their problems.

Since my wife's cancer, I've adopted an observational position about oncology that purveyors service what they sell, and often pooh-pooh other providers or treatments. If they don't sell it, there's a good chance they don't know (as) much about the subject as those who have substantial experience and can demonstrate its working(s). This allows me to avoid speculation about combinations of ignorance, illiteracy, innumeracy, laziness, integrity, intellect and institutional limitations (e.g. FDA).
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Dang 1cm Liver Met!

Postby rp1954 » Fri Sep 14, 2018 1:56 pm

teacher2017 wrote:I am currently looking up the benefits of using Tagamet after surgery to stop reoccurrence. If anyone knows anything on the subject, please chime in.


For ongoing liver tolerance and performance from drugs and supplements, we watch extended liver panels. We have no liver surgery experience.

For general safety, with or following liver surgery, some qualified doctors to ask (or papers to read) might be those doctors who did advanced liver surgeries in the 1980s and early 90s with high dose cimetidine for the prophyllaxis of acid aspiration.

Cimetidine, vitamin C and others, inhibit some growth factors, like VEGF, that become increasingly important with wound healing and liver regeneration. So I would look for informed opinions vs timing and monitoring. However, vitamin C has been used for surgical wound healing because of its cartilege forming property, like we did with IV and oral vitamin C also helps reduce post surgical immune suppression.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

Re: Dang 1cm Liver Met!

Postby heiders33 » Fri Sep 14, 2018 3:55 pm

I would love to take Cimitedine starting today, and take it for two days after surgery. But I would have to ask for it via IV, and how would I do that?
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Dang 1cm Liver Met!

Postby rp1954 » Fri Sep 14, 2018 3:58 pm

We reminded them verbally in the run up to surgery, but had agreed earlier lining the surgery up.

IV cimetidine was not available anymore, so the surgeon okayed a big dose of oral cimetidine some hours before surgery, even though she was NPO. We happened to have our box of 400 mg cimetidine tablets, handy since the pharmacy was closed at 2-3 am in the morning. Her surgery was for para-aoritic lymph nodes and was remarkably quick. The first time we arranged a surgery a year earlier, the surgeon failed us and did not deliver on the cimetidine, but we did apply it the weeks before, and for long after (after was largely based on CA199 blood level), with great results in concert with the other stuff.

I would be a little cautious about liver surgery, less experience here at CT, make them do their homework. There was a big loose leaf compendium of surgical tables that still contained cimetidine dosing for surgery guidance, that the resident had to dig out while everybody else was asleep.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

Re: Dang 1cm Liver Met!

Postby heiders33 » Fri Sep 14, 2018 4:19 pm

Ok, maybe I will hold off for now. I found out today that I am KRAS mutant so I’m not sure if that affects anything. I don’t know what my CA199 levels were at diagnosis although if I called my oncologist he could probably tell me.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Dang 1cm Liver Met!

Postby Cmac1275 » Fri Sep 14, 2018 4:22 pm

teacher2017 wrote:Ok resection done! I’m still here! I was sent home after a day. I was walking and eating on my own so they said I could recoup at home. Completely laproscopically and the surgeon said all looked clear via the internal ultrasound.
I plan on being very careful and really taking care of myself. I agree that we have to control what we can control. I will do my best.

I am currently looking up the benefits of using Tagamet after surgery to stop reoccurrence. If anyone knows anything on the subject, please chime in.


So glad to hear surgery went well and you’re back home. RP1954, I am learning, is a tremendously knowledgeable resource in this community. I learned about Life Extensions and the Moss Reports from him. These are resources I’m currently looking into. I too have been researching Cimetidine, Curcumin, Selenium and a host of other supplements. But then I ask myself, what’s the right dose for me? Which of the many dozens of recommended substances should I take?

Coincidently, I started reading a book by Dr. Nasha Winters titled “The Metabolic Approach to Cancer.” It focuses mostly on the power of nutrition — specifically the Ketogenic diet — to fight / prevent cancer. Now, diet and cancer has been debated and discussed widely. But what I’m learning the most from this book is that I need to get intimate with my cancer. I need to know everything I can about it. In fact, a colleague of mine that works at Roswell Park Cancer Institute recommended I get the Foundation One test done. He advocates that I need to know the genomics of my disease. That’s the best way to personalize an integrative treatment plan — not just to fight the good fight, but also to slow progression and future recurrence.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Dang 1cm Liver Met!

Postby rp1954 » Fri Sep 14, 2018 5:13 pm

Serum CA199 is pretty strongly associated with KRAS/BRAF mutants and is not the pancreatic cutoff (a value usually between 34 and 40 units, depending on vendor and location). I would try to get the CA199 value for future reference, and make a real decision with the surgeon about his informed safety views.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

Re: Dang 1cm Liver Met!

Postby heiders33 » Fri Sep 14, 2018 5:42 pm

Ok will do. When you say get the CA199 value, you mean what it was at diagnosis, right?
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Dang 1cm Liver Met!

Postby rp1954 » Fri Sep 14, 2018 11:20 pm

Well, whatever you have, at dx, pre-surgery, a pre-treatment peak is one kind of information; a post surgery and a low are other information. One value, whenever, answers the "less than 2 units?", Yes/No question. The more you post, the more there can be answers later.

Other timings build up potentially useful information.
e.g. We needed to know how much 5FU - LV was needed to drive the immunochemo treatment. CEA in large lymph nodes wasn't budging downward before surgery, but CA199 gave a pretty clear response, and that baseline point has worked well enough for the chemo portion ever since, controlling later sources of CEA, too, over time with misc. extras.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

mpbser
Posts: 498
Joined: Wed Apr 19, 2017 11:52 am

Re: Dang 1cm Liver Met!

Postby mpbser » Sun Sep 16, 2018 1:52 pm

Thank you for mentioning Dr. Nasha Winters' book. I looked her up and found a very informative video of her explaining "the metabolic approach to cancer." https://www.youtube.com/watch?v=KvnzkoCfLno My husband is diabetic again and this is all very worrying for me. But he knows what is healthy for him and what isn't. His choice.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Caat55, martd, retiredteacher and 58 guests