I need any suggestions

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JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

I need any suggestions

Postby JDinNC » Wed Jul 18, 2018 4:50 pm

A young lady with Stage 4 colon cancer has been messaging me for close to a year. For some unknown reason she came to me for advise. I’ve never met her or even know her name. She has three liver tumors that can’t be removed. Her doctor has told her that she is going to die but that she will try to prolong her life. She was taking chemo pills which didn’t shrink her tumors. She had one radiation treatment about a month ago. Her never had a colon resection...but these past two months, she’s been having severe pain in her back and bowels along with constipation. She’s been to the ER twice having CT scans finding no problems, her oncologist told her she doesn’t know the reason for her pain. I suggest that she go to her primary doctor, which she finally did. She was sent to a surgeon who found that her tumor is blocking her bowels and is now schedule for surgery next week. Her doctor told her to start drinking Ensure because she’s weak and weights only 90 lbs. Shes afraid to eat or drink anything with sugar because it causes cancer. Which I tried to explain that she still has cancer and it’s more important to get her weight back on. She is always asking for my opinion on things. I can’t answer her some of her questions because my cancer went to my lung not to the liver. So I don’t know any treatments for liver tumors. I’ve tried to get her to go to another oncologist but she won’t do it. She lives outside of Washington DC so I suggested going to John Hopkins for other possible treatments.
Is there anyone on this forum that has inoperable liver tumors and what treatments if any, you were offered. And if anyone else has any other suggestions it will greatly be appreciated.
Thanks in advance.
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

User avatar
betsydoglover
Posts: 940
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: I need any suggestions

Postby betsydoglover » Wed Jul 18, 2018 5:50 pm

I'm In DC - Washington Hospital Center has the premier colorectal cancer specialist. I can also suggest a great local onc.

You mentioned being afraid to eat or drink anything with sugar because it causes cancer. Sugar does not cause cancer. This myth comes from the fact that PET scan measures sugar uptake in various spots. ALL cells feed on glucose. Cancer cells uptake more glucose because they are more metabolically active. That's all there is to the sugar thing.
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

martd
Posts: 61
Joined: Tue Nov 21, 2017 3:48 pm

Re: I need any suggestions

Postby martd » Wed Jul 18, 2018 8:10 pm

I was told the same that I was inoperable Dec of 2017. I'm currently sitting in my recliner right now recovering from stage two of my liver resection. The most important advise you can give her is get a second opinion. And also for her to join this forum. There are many incredible people here with extensive knowledge.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: I need any suggestions

Postby JDinNC » Wed Jul 18, 2018 9:05 pm

betsydoglover wrote:I'm In DC - Washington Hospital Center has the premier colorectal cancer specialist. I can also suggest a great local onc.

You mentioned being afraid to eat or drink anything with sugar because it causes cancer. Sugar does not cause cancer. This myth comes from the fact that PET scan measures sugar uptake in various spots. ALL cells feed on glucose. Cancer cells uptake more glucose because they are more metabolically active. That's all there is to the sugar thing.



Thank you for your offer.....I would like that name of that oncologist. Whether she will do anything with it, I don’t know. I have begged her to go to another doctor and I even researched for her some in her area.
BTW...congratulations on your 5 years...NED. Today, I learned my PET scan was normal making this month my 5 years mark of being NED

Thank you for your suggestions
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

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CRguy
Posts: 9675
Joined: Sun Feb 10, 2008 6:00 pm

Re: I need any suggestions

Postby CRguy » Wed Jul 18, 2018 9:28 pm

Maybe get her to register an account here on CTalk so she could have open access to the forum and email / PMs with other members,
as well as the vast archive of past postings and information ?????

JMO
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: I need any suggestions

Postby JDinNC » Wed Jul 18, 2018 9:52 pm

martd wrote:I was told the same that I was inoperable Dec of 2017. I'm currently sitting in my recliner right now recovering from stage two of my liver resection. The most important advise you can give her is get a second opinion. And also for her to join this forum. There are many incredible people here with extensive knowledge.


Thanks for your reply...I have begged her numerous times to get a second opinion. I even sent her links for oncologist in her area. I suggested to her to join this forum when I first met her. I know there might be a language barrier which may be why she clings to me for help. Knowing she can instant message me 24/7. Did your doctor do anything special that helped make it possible to have your liver tumors removed. I know she has three but I’m guessing they needed to shrink which the chemo pills never did. As a Stage 4 colon cancer survivor myself, I know about the great people here and the knowledge they share. They were tremendous help with my journey. Which is why I have come here for help and suggestions.
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

martd
Posts: 61
Joined: Tue Nov 21, 2017 3:48 pm

Re: I need any suggestions

Postby martd » Thu Jul 19, 2018 12:48 am

With me there was a couple of factors the first was I had a major response to chemo, it doesn't sound right that she is on pills typically it should be treated more aggressive with folfox or folfri. My colorectal surgeon
at Mayo clinic referred me to the transplant team, my liver was covered in tumors, when I met with that surgeon he told me there was no transplant but he saw potential for a two stage resection with a good response to chemo. He also said I would be surprised how many people that can be resected aren't even given the chance because it's beyond they're capabilities. Who knows maybe you're not getting the complete story from her also. As for the sugar thing I just finished a Klondike bar, Doc said get alot of vitamin D for liver growth, so hey..Doc's orders right.

Dan
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

erins
Posts: 31
Joined: Sun May 27, 2018 12:41 pm

Re: I need any suggestions

Postby erins » Thu Jul 19, 2018 2:49 am

I’m also near DC (I’m in NoVA) and would be happy to pass along names of my surgeon/oncologist/GI team for a second opinion—my care was through Virginia Hospital Center, and everyone was wonderful. They also have a very good language/interpreter team to help patients in case that’s a concern of hers.

I had a lot of issues with losing weight and all my doctors said it was more important to put/keep the weight on than to worry about almost anything else. The Ensure drinks they gave me before surgery made a huge difference in my recovery—when you’re already on the slim side, you need the extra energy reserves for recovery—the benefits of taking in extra calories VASTLY outweighs any potential (and largely unverified) risks.
38 yr old female
Rectal bleeding for 1 month—>
5/4/18 colonoscopy found mass in sigmoid colon
5/21/18 LAR
stage 2a, 0/17 lymph, clean margins
T3N0M0 G1
LVI neg, PNI neg, MSS
9/21/18 CEA 0.8
11/16/18 CEA 0.8 & CT clear
12/7/18 iron infusion

mpbser
Posts: 504
Joined: Wed Apr 19, 2017 11:52 am

Re: I need any suggestions

Postby mpbser » Thu Jul 19, 2018 5:32 am

"I have begged her numerous times to get a second opinion."

You can lead a horse to water but can't make them drink. She has to have the will to live. Hopefully, she will take your advice but don't beat yourself up if she doesn't.
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

User avatar
betsydoglover
Posts: 940
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: I need any suggestions

Postby betsydoglover » Thu Jul 19, 2018 3:35 pm

Dr. John Marshall at Georgetown (misspoke about Wash Hospital Center) is renowned for treatment of colorectal cancer..https://www.medstarhealth.org/doctor/dr ... rshall-md/

My local oncologist is wonderful. She practices in Wheaton and Silver Spring. http://marylandoncology.com/locations-h ... sworth-md/

Wishing the best for your friend.
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

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

Re: I need any suggestions

Postby mhf1986 » Thu Jul 19, 2018 5:50 pm

We have met with Dr. Marshall as a consult...very easy to talk with him. Totally recommend. As DH has learned, SHE has to be her OWN advocate.
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

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: I need any suggestions

Postby JDinNC » Fri Jul 20, 2018 8:45 am

erins wrote:I’m also near DC (I’m in NoVA) and would be happy to pass along names of my surgeon/oncologist/GI team for a second opinion—my care was through Virginia Hospital Center, and everyone was wonderful. They also have a very good language/interpreter team to help patients in case that’s a concern of hers.

I had a lot of issues with losing weight and all my doctors said it was more important to put/keep the weight on than to worry about almost anything else. The Ensure drinks they gave me before surgery made a huge difference in my recovery—when you’re already on the slim side, you need the extra energy reserves for recovery—the benefits of taking in extra calories VASTLY outweighs any potential (and largely unverified) risks.



I would appreciate the names you have to offer. I want to give her options and hope she will follow through with a second opinion. Through I really don’t think she will....she’s so mind set on avoiding sugar, thinking salads, barley, wheatgrass, alkaline water will stop her cancer. I can’t get it into her mind that these are healthy foods to consider once she’s cancer free, so she’s eating like a bird and wasting away. She’s having surgery next week to remove a blockage where her doctor told her to drink Ensure, she was more concern about how many grams of sugar was in it. I’m not sure if she actually drinking it.
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

User avatar
mobrouser
Posts: 110
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: I need any suggestions

Postby mobrouser » Fri Jul 20, 2018 10:14 am

JD I must commend you for all your efforts in trying to help this woman. You are an angel.
All the best to you.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: I need any suggestions

Postby plastikos » Sat Jul 21, 2018 11:16 am

If it’s available where she lives I would tell her to look into SIRT to shrink here liver tumors.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED


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