Preparing a facts & to-do-list for "newcomers"?

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hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Preparing a facts & to-do-list for "newcomers"?

Postby hopie » Thu Feb 21, 2019 7:37 am

Hello,
I'm rather new to this forum and to the world of cancer (as a caregiver) and this forum has been crazy helpful. I've learned SO MANY things that changed my mom's treatment plans and will likely change them for the better in the future.

...However, most things I've learned required extensive research here as well as on google. I was wondering if we could prepare a simple facts and to-do-list for others?

For example, I didn't know that getting CEA and CA199 before surgery would be crucial for knowing if they're good markers, so we missed that opportunity. It also took me some time to learn that biomarkers do not work the same for everyone.

Anyone interested in helping me prepare such a list? We can prepare them according to staging/type to keep lists minimal and user friendly, or we can create subsets (1. Staging, 2. Tests etc.).

I think it would be ideal to keep it short and simple and we can add links to threads to make access to further information easier but I'm open to other ways to organize this as well!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: Preparing a facts & to-do-list for "newcomers"?

Postby hopie » Thu Feb 21, 2019 7:38 am

Tentatively, these are the things that I have at the top of my head:

1. Stats are old, like, seriously old AND invalid (people die of other things!)
2. Get your CEA, CA199 checked before primary tumor surgery
3. LARS is a thing
4. Get a colorectal surgeon
5. Get a second opinion if you don't like your onc
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

martd
Posts: 98
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Preparing a facts & to-do-list for "newcomers"?

Postby martd » Thu Feb 21, 2019 12:45 pm

This is a good idea, and will definitely be very helpful. Adding to #5, getting a second opinion at a major cancer center. And #4, a board certified colorectal surgeon
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin
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
01/19 clear scan CEA .9
04/19 clear scan CEA .9

AmyG
Posts: 122
Joined: Tue Dec 25, 2018 8:08 pm

Re: Preparing a facts & to-do-list for "newcomers"?

Postby AmyG » Thu Feb 21, 2019 8:59 pm

For those that show up here as Stage IV:

What makes a good candidate for HAI pump?
Standard chemo protocols?
What to expect if you have a liver resection in your future?
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin

ozziej
Posts: 235
Joined: Thu May 21, 2015 8:35 pm

Re: Preparing a facts & to-do-list for "newcomers"?

Postby ozziej » Fri Feb 22, 2019 6:34 am

Following on from number 3 'LARS is a thing': ask your doctors about the possibility of watch and wait as an alternative to resection, especially if your tumour is/was very low.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

justin case
Posts: 4245
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Preparing a facts & to-do-list for "newcomers"?

Postby justin case » Fri Feb 22, 2019 5:27 pm

You are a new person to the forum. To do list, listen to your health care provider, stay off google !I had a rectal and colon tumor, so I guess that's a plural. I went through FOLFOX, and radiation. It can be accomplished ! 7 years NED !
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

User avatar
ginabeewell
Posts: 205
Joined: Wed Oct 24, 2018 10:30 am

Re: Preparing a facts & to-do-list for "newcomers"?

Postby ginabeewell » Sat Feb 23, 2019 1:55 am

Things I tell people:

Read Radical Remission, a data-driven look at the commonalities across people who survive beyond the odds. Not all green juice; chapters on integrative medicine and taking a proactive approach to your health were particularly compelling to me and helped shape how I wanted to approach my cure.

Make sure you find an oncologist who is aligned to your approach and wants to cure you. The first three with whom I spoke told me I had two years. It took four tries to find someone who believed I could survive. And who turned out to be open to an integrated approach.

If your chemo regimen includes Vectibix or Erbitux, ask to start treating the rash that 90% will get prophylactically. Once it's there it is difficult to treat, and medical papers suggest best approach is to treat two weeks prior to usage. Nobody mentioned that to me until my rash was in full bloom!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: Preparing a facts & to-do-list for "newcomers"?

Postby hopie » Sat Feb 23, 2019 5:43 am

Thank you all for suggestions!! Here's an updated version. I made 4 groups to organize them a little bit but please add/correct! I'm bolding parts I could use some help with.

A. The shock
1. Stats are old, like, seriously old AND invalid. They include people who died of other things and were drawn from a period when targeted drugs and immunotherapy weren't available. Not only you’re not a number, but also your chances today are MUCH HIGHER.
2. There are curative possibilities even for Stage IV. Check the forum to see many survivors! (links to topics?)

B. Initial steps
1. Get a board certified colorectal surgeon.
2. If possible, go to a major cancer center. If not, please at least get a second opinion at a major cancer center. Make sure to find an oncologist who is aligned to your approach and wants to cure you. Many here have tried more than 3 doctors before they found “the one”—the one that wants to cure you!
3. Info on staging:
(links?)
4. Ask your oncologist whether you should try to gain weight. Calculating your BMI might also help: https://www.verywellfit.com/bmi-what-is ... ex-3120088
5. Consider finding a therapist, this is a difficult process and get all the help&support you can get!

C. Treatment
1. Get your CEA, CA199 checked before primary tumor surgery. This will help a lot to see the course of your treatment. additions?
2. Get your tumor tested, learn your mutations (KRAS, BRAF, NRAS and MSS/MSI etc.)
3. LARS is a thing, ask your doctor about it. If your tumor is very low, ask about the possibility of “Watch and Wait.”
4. Standard chemo protocols: (link)
5. Managing metastases: you have lots of options!
—I remember seeing a post where someone listed all the possibilities, would appreciate if someone would link it!—
Liver: HAI, RFA, …. we could link these too?
Lungs: …….
Peritoneum: …….
Brain: ……..

D. Additional/Misc.
1. If your chemo regimen includes Vectibix or Erbitux, ask to start treating the rash that 90% will get prophylactically. Once it's there it is difficult to treat, and medical papers suggest best approach is to treat two weeks prior to usage!
2. Reading suggestions: Radical Remission, …..
Last edited by hopie on Sun Mar 03, 2019 4:47 am, edited 4 times in total.
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

User avatar
ginabeewell
Posts: 205
Joined: Wed Oct 24, 2018 10:30 am

Re: Preparing a facts & to-do-list for "newcomers"?

Postby ginabeewell » Mon Feb 25, 2019 9:59 am

One more to add: eat as much as you can before starting chemo, especially if you have already lost weight and can't afford to lose more. I wish I had focused more on packing a few extra pounds on, and less on green juices in those early days.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: Preparing a facts & to-do-list for "newcomers"?

Postby hopie » Tue Feb 26, 2019 3:26 pm

ginabeewell wrote:One more to add: eat as much as you can before starting chemo, especially if you have already lost weight and can't afford to lose more. I wish I had focused more on packing a few extra pounds on, and less on green juices in those early days.


This is great advice too! Were you given any specific advice on this? I think it might depend on the current situation of one's body, BMI etc?
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

User avatar
ginabeewell
Posts: 205
Joined: Wed Oct 24, 2018 10:30 am

Re: Preparing a facts & to-do-list for "newcomers"?

Postby ginabeewell » Tue Feb 26, 2019 5:17 pm

hopie wrote:
ginabeewell wrote:One more to add: eat as much as you can before starting chemo, especially if you have already lost weight and can't afford to lose more. I wish I had focused more on packing a few extra pounds on, and less on green juices in those early days.


This is great advice too! Were you given any specific advice on this? I think it might depend on the current situation of one's body, BMI etc?


Not really. They focused on nutrition once I started chemo. But I had a good two weeks before I started when I could have been bulking up. I announced my intention to eat healthy and they reinforced that once I started chemo, the real important thing is that I eat and keep my weight up. And if the only thing I feel like eating is Frosted Flakes I should eat Frosted Flakes. (Which some days is kind of how it goes.)
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

Beckster
Posts: 362
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Preparing a facts & to-do-list for "newcomers"?

Postby Beckster » Tue Feb 26, 2019 5:42 pm

I agree Ginabewell! My oncologist told me that chemo works better with extra weight. If I want something, he said eat it! He did not want me losing any weight and said that you do not start changing your diet while on chemo.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18, 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1
Clear Colonoscopy 10/17 :D

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: Preparing a facts & to-do-list for "newcomers"?

Postby hopie » Wed Feb 27, 2019 4:23 am

ginabeewell wrote:I announced my intention to eat healthy and they reinforced that once I started chemo, the real important thing is that I eat and keep my weight up. And if the only thing I feel like eating is Frosted Flakes I should eat Frosted Flakes. (Which some days is kind of how it goes.)


Beckster wrote:I agree Ginabewell! My oncologist told me that chemo works better with extra weight. If I want something, he said eat it! He did not want me losing any weight and said that you do not start changing your diet while on chemo.


Interesting! How would you describe yourselves on weight? My mom's OK but probably has a couple of extra kilos on her already. I asked her oncologist if I should try to make her gain weight before she started chemo, she said no need, leave her alone. Not sure if she thought I'd be force feeding my mom or she thought mom didn't need extra weight.

If others come and comment, we might either add this as a suggestion or as a question that they should talk with their medical team before chemo!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

Beckster
Posts: 362
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Preparing a facts & to-do-list for "newcomers"?

Postby Beckster » Wed Feb 27, 2019 6:43 am

hopie wrote:
ginabeewell wrote:I announced my intention to eat healthy and they reinforced that once I started chemo, the real important thing is that I eat and keep my weight up. And if the only thing I feel like eating is Frosted Flakes I should eat Frosted Flakes. (Which some days is kind of how it goes.)


Beckster wrote:I agree Ginabewell! My oncologist told me that chemo works better with extra weight. If I want something, he said eat it! He did not want me losing any weight and said that you do not start changing your diet while on chemo.


Interesting! How would you describe yourselves on weight? My mom's OK but probably has a couple of extra kilos on her already. I asked her oncologist if I should try to make her gain weight before she started chemo, she said no need, leave her alone. Not sure if she thought I'd be force feeding my mom or she thought mom didn't need extra weight.

If others come and comment, we might either add this as a suggestion or as a question that they should talk with their medical team before chemo!


I was about 10 lbs overweight...148ilbs. At the end of every cycle, he checked my weight. By the end of chemo, I had gained 13 lbs. I never needed any of the nausea meds during my chemo....maybe from gaining weight? After chemo, I took off the extra weight.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18, 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1
Clear Colonoscopy 10/17 :D

User avatar
ginabeewell
Posts: 205
Joined: Wed Oct 24, 2018 10:30 am

Re: Preparing a facts & to-do-list for "newcomers"?

Postby ginabeewell » Wed Feb 27, 2019 12:23 pm

hopie wrote:Interesting! How would you describe yourselves on weight? My mom's OK but probably has a couple of extra kilos on her already. I asked her oncologist if I should try to make her gain weight before she started chemo, she said no need, leave her alone. Not sure if she thought I'd be force feeding my mom or she thought mom didn't need extra weight.

If others come and comment, we might either add this as a suggestion or as a question that they should talk with their medical team before chemo!


I'm 5'6 and naturally thin most of my life. My "ideal" weight is probably 115 if I was eating healthy and working out. I had probably been closer to 125 six months before diagnosis and then lost 10-15 pounds without trying. So I was maybe somewhere between 110 and 115 when I got started - close to my ideal weight (if not healthy because I wasn't working out).

I started losing a few pounds a week once chemo started. After my 5th round, when in the hospital with an infection and reduced to a fluids diet, I went down to 90. During my 7 week chemo break that followed, I ate like it was my job and gained about 20 lbs. Now back on chemo I've dropped a few but I am maintaining a little more successfully now that I'm not trying to hold myself to strictly healthy foods.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully


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