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

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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 1:19 pm

Beckster wrote: I never needed any of the nausea meds during my chemo....maybe from gaining weight? After chemo, I took off the extra weight.


Mom only had two rounds so far but she hasn't needed them either. Weight might indeed be relevant since they adjust the dose according to your weight too?

ginabeewell wrote: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.


Did this change your side effects at all?

I'll add "consult your oncologist about weight gaining" to the list!
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.

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ginabeewell
Posts: 221
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Wed Feb 27, 2019 10:55 pm

hopie wrote:Did this change your side effects at all?

I'll add "consult your oncologist about weight gaining" to the list!


That's hard to say. I definitely have had a much easier time with chemo after my break than I did before. I had a lot of fatigue for my first five rounds and almost none other than disconnect day on my last three.

I've mostly chalked that up to significantly less cancer in my system when I restarted. Not sure if that is true or not.

But I am having a much easier time maintaining my weight now that I've loosened up about it. I try to make sure the things I eat have at least SOME nutritional value - but that could be banana bread with cream cheese for protein or a latte with whole milk. And there is a great donut shop near my chemo so if I'm craving one I will have one. It took my therapist to convince me to lighten up, and my husband who pointed out I just couldn't physically eat enough protein and vegetables to gain the weight I needed.

Maybe find a therapist should be on your list!
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 » Thu Feb 28, 2019 6:16 am

ginabeewell wrote:
Maybe find a therapist should be on your list!


I'll add this too. And I'm happy that chemo is easier on you now!

My mom was given the same advice: priority is for her to eat, if healthy, great. If not, as long as she eats, we're good.
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.

boxhill
Posts: 242
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Fri Mar 01, 2019 1:40 pm

If you haven't had surgery yet, by all means get your CEA and CA119 readings.

As soon as you have surgery--or if it is available earlier via biopsy--get your basic tumor genetics. Find out if you are dMMR, MSS or MSI-H, whether you have "wild type" or mutated BRAF and KRAS. These things at least should be available immediately as part of your pathology report. Read it, google terms you don't understand, ask your surgeon or oncologist questions about it. Google generally to learn about CRC, available treatments, etc. Be as informed as you can.

I do agree with the anti-google crowd here on one thing: pay no attention to the survival stats on wikipedia and the like, because they are derived from cohorts of people who were in many cases diagnosed and treated before the drugs in use today were available. If you are Stage IV, realize that the dire stats you read do not differentiate between a person who has mets to the liver, lungs, periteneum, and spine at diagnosis vs a person who is stage IV by virtue of a solitary very small subcapsular liver met removed during the hemicolectomy. Use your common sense.

At this point, any good oncologist should be requesting a full genetic analysis on your tumor, at least if you are stage 3 or 4. Ask about it. Push for it if necessary. Inform yourself about why this is important, and become familiar with the results. You need an oncologist who is willing to fight for your life. It can't be done without that information.

Don't just sit back and listen to what your doctor tells you. Inform yourself and ask questions. Ask on forums like this one and Colontown (A superb private group on FB). Ask you doctors, read articles from reputable sources. You need a crash course on the subject of CRC, and your particular type of CRC in particular.

Personally, I don't think that a board-certified colorectal surgeon is absolutely necessary, unless perhaps you have a rectal tumor. My surgeon was a liver transplant specialist who also does lots of colorectal surgery, and he is great. He practices at a major regional hospital that is also a teaching hospital. Don't use someone who practices in the boonies and sees 10 cases a year.

If at all possible, go to a major cancer center or to a center--like mine--that is associated with a major cancer center. Ask your oncologist/surgeon to arrange a second opinion at such a place. Any good oncologist will actively SEND you to one of the biggies for a second opinion. Mine did.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

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

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

Postby hopie » Sun Mar 03, 2019 4:49 am

boxhill wrote:If you haven't had surgery yet, by all means get your CEA and CA119 readings.


Thanks for these boxhill! I've made some additions to the list, it's on the first page, sorry, I don't know how to provide a link.

I think I'll add colontown facebook groups to Additional/Misc. Can you give me a link so I can add it?)

Let me know if I missed anything!
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.

Pyro
Posts: 239
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Sun Mar 03, 2019 10:56 am

I’ve had a request into Colon Town for a week and got nothing back!?
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda, CEA @36, treatment failure

rp1954
Posts: 1518
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Tue Mar 05, 2019 2:21 pm

My suggestion is that an emphasis on "Day 1" recommendations and actions or as close as possible be made. For this is where people are losing options, robbed of comfort and years of their future.

It actually would be best if we could convince a medical group, like the (diagnosing) gastroenterologists, if not ASCO, to participate on this, as either an optional or research protocol on the bloodwork, cimetidine, vitamin D, and other outright nutrient deficiencies. Or at least get out of the way of patient requests.

Facts:
It would be nice to recreate, consolidate, expand the old Life Extension articles with other oncological information into a single "read me", for here.

To do:
The first "to do" would ideally be a "first aid kit" at the gastroenterologist's office - a big whopping set of blood tests, Initial Recommended Blood Tests, and then some directly observed oral tx chemistry - "take this now" and "take this home" with several days supply, if no contraindications.
The second to do might be, after the blood tests are in, call some phone number(s) and some specialized recommendations for oral neoadjuvant support.
The third to do would be to get a month's supplies for until close to first major treatments with surgery, radiation and/or some kind of chemo.

Bloodwise, I not only think we should exhaust the common lab tests and markers I've mentioned before, but that it is probably highly desirable to get a liquid biopsy on the first day, too if an aggressive neoadjuvant chemistry (or radiation) is used.

Without a thorough, 1-2-3 initial punch, many cross supporting opportunities are lost, forever.

Follow up:
My views are most aimed at colon cancer because of the radiation treatment of RC patients, even though they would probably be about the same without radiation (as the Japanese developed their RC treatments into 2000s, at least)
An advanced bloodwork is scientifically most thorough and useful, at Day 1; Day before 1st treatment (surgery, chemo, radiation) if more than ~2 weeks; 4-7 days after surgery; and some weeks later.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

boxhill
Posts: 242
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Tue Mar 05, 2019 7:45 pm

Very good points, and I would suggest that this protocol needs to be expanded to ERs also, if it is to include those of us who present at the ER with nasty blockages necessitating emergency surgery. They don't have to have the results before surgery, I would think, but they could have sent the pre-surgical blood samples off for testing.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Sun Mar 17, 2019 12:01 am

Any more examples of helpful tips for newcomers?

Here's one to consider:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59639&p=475893#p475893

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betsydoglover
Posts: 967
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

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

Postby betsydoglover » Mon Mar 18, 2019 6:07 pm

Re: opinion at a major cancer center - it depends on so many factors.

If you are diagnosed 3 the regimen is very standard - for the first go-round there is little need to seek another opinion unless you don't trust the onc you have see initially. Likewise with Stage 4 with solitary liver or lung met.

I only mention this, because the initial diagnosis is so stressful and if the case is "standard", telling someone that they must seek a second opinion at a center potentially far from them just adds stress that is probably not needed.

The need for a second opinion also depends upon where you live. If you are in a major metro area (e.g. DC where I am), there are many very experienced community oncs who are well connected with major hospitals and clinical trial locations (in the DC case eg. NIH/NCI, Wash Hospital Center (where HIPEC was invented), Georgetown, GW, etc.) So, with a standard stage 3/4 case and in a major metro area IMO a visit to one of these centers is not initially necessary as a first line treatment - and not doing this can reduce initial stress.

Of course if things are more advanced or if there is progression during/after standard treatment, then second opinions at major cancer centers are absolutely called for. Just wanted to mention that at initial diagnosis a more advanced is not necessarily required.
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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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Sat Mar 23, 2019 5:18 am

Here's another little-known fact relevant for newcomers from the US or Canada:

In the U.S., possible toxicity due to excess folate or Vitamin B9
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50140&hilit=folate#p382499

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Sat Mar 30, 2019 12:31 pm

There is another little-known fact that newcomers may not be aware of: If a newly diagnosed patient is prescribed an anti-anxiety drug such as Xanax (alprazolam) or Ativan (lorazepam) , this prescription is only appropriate for short-term relief (from 4 to 8 weeks duration maximum), and only for use when absolutely necessary. Any use longer than that may trigger a dependency that may lead to more serious long-term problems:

Last edited by O Stoma Mia on Tue Apr 23, 2019 11:21 pm, edited 1 time in total.

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LPL
Posts: 631
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Sat Mar 30, 2019 12:53 pm

O Stoma Mia wrote:Here's another little-known fact relevant for newcomers from the US or Canada:

In the U.S., possible toxicity due to excess folate or Vitamin B9
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50140&hilit=folate#p382499

Thank you for posting this O Stoma Mia.
I didn’t know there was a difference between for example Europe and USA regarding these side effects. It must be extra hard for people in USA who have problems with the MTHFR gene to avoid Folic acid. Presumably there are also many who haven’t done a test, who don’t even know they have problem and should avoid Folic acid. Both hubby and I are compound heterozygous so I know Folic acid is not good for him.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Wed Apr 03, 2019 2:31 am

Newcomers here may not realize that over-the-counter Tylenol (acetaminophen) can be harmful and can cause liver damage. In some cases involving high dosage levels, it can cause acute liver failure.

Extra-Strength Tylenol and Liver Problems
Acetaminophen is the active pharmaceutical ingredient in Tylenol, and it has been known for decades to have a toxic effect on the liver at high doses. However, most consumers are not fully aware of this risk and do not appreciate the possibility of liver problems from Extra Strength Tylenol if they take too much of the medication.
https://www.youhavealawyer.com/blog/2013/07/02/extra-strength-tylenol-liver-problems/

Acetaminophen and Liver Damage Symptoms
TYLENOL® is safe when used as directed, but taking too much acetaminophen can cause liver damage.
https://www.tylenol.com/safety-dosing/health-conditions/liver-disease

Paracetamol causes most liver failure in UK and US
Unintentional overdose with the painkiller paracetamol (acetaminophen) is the most common cause of acute liver failure in United Kingdom, a study has found ...Paracetamol’s toxicity is also the single biggest cause of acute liver failure in the United States.
Those most likely to have acetaminophen induced liver failure are depressed, in chronic pain, misuse alcohol or narcotics, or take several preparations at the same time.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403265/

How many Tylenol extra strength would cause an overdose? What could treat the overdose?
https://www.quora.com/How-many-Tylenol-extra-strength-would-cause-an-overdose-What-could-treat-the-overdose

Paracetamol Poisoning
In the United States more than 100,000 cases occur a year. In the United Kingdom it is the medication responsible for the greatest number of overdoses... In the United States and the United Kingdom paracetamol is the most common cause of acute liver failure.
https://en.m.wikipedia.org/wiki/Paracetamol_toxicity

Paracetamol Poisoning
It is important to remember that, when used at therapeutic levels, paracetamol is usually safe and effective. However, taking >100mg/kg or >4 g per day for a few days has been known to result in hepatotoxicity.
https://patient.info/doctor/paracetamol-poisoning

jmn
Posts: 22
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

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

Postby jmn » Fri Apr 05, 2019 3:49 pm

It has been said many times already, but I want to say it again: get a second opinion—carefully choosing a doctor who specializes in your cancer type and is affiliated with an NCI-designated cancer center. You want to do everything in your power to prevent diagnostic and staging errors and to obtain accurate and complete information to determine the best course of treatment.

Why am I so emphatic about this? The pathologists at my very fine community hospital identified no high-risk factors after my colon resection surgery, which is why my oncologist recommended surveillance and no adjuvant treatment. I got a second opinion from MSK; their pathologists analyzed my tumor specimen and arrived at a very difference diagnosis. They identified several high-risk factors, prompting Dr. Leonard Saltz, my MSK oncologist, to start me on chemotherapy without any further delay. I'm very glad that I heeded the advice of Beckster, O Stoma Mia, and others to get a second opinion.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, T4aN0M0
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (Capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0
NED: 5-28-19 :D


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