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

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

Postby O Stoma Mia » Sat Apr 06, 2019 11:56 pm

AmyG wrote:... Standard chemo protocols?

At the beginning, just after diagnosis, it would be good if the newcomer could become familiar with the range of medications that have been approved for use with colorectal cancer. There are about a dozen of these at this point in time. Some are used separately, and some are used in combination. Some are used mainly for advanced, metastatic cancer, while others are used mainly for early stage, non-metastatic cancer.

    Drugs Approved in U.S. for Colorectal Cancer
  1. Avastin (Bevacizumab)
  2. Camptosar (Irinotecan Hydrochloride)
  3. Cyramza (Ramucirumab)
  4. Eloxatin (Oxaliplatin)
  5. Erbitux (Cetuximab)
  6. 5-FU (Fluorouracil Injection)
  7. Fusilev (Leucovorin Calcium)
  8. Keytruda (Pembrolizumab)
  9. Lonsurf (Trifluridine and Tipiracil Hydrochloride)
  10. Vectibix (Panitumumab)
  11. Xeloda (Capecitabine)
  12. Yervoy (Ipilimumab)
  13. Zaltrap (Ziv-Aflibercept)
    Drug Combinations Used in Colorectal Cancer
  1. FOLFIRI
  2. FOLFIRINOX
  3. FOLFIRINOX+AVASTIN
  4. FOLFIRI+AVASTIN
  5. FOLFIRI+ERBITUX
  6. FOLFOX
  7. FOLFOX+AVASTIN
  8. 5FU+LV
  9. XELIRI
  10. XELOX(CAPEOX)

rp1954
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Re: Preparing a facts & to-do-list for "newcomers"?

Postby rp1954 » Sun Apr 07, 2019 9:42 am

O Stoma Mia wrote:
AmyG wrote:... Standard chemo protocols?

I would suggest some improvements with a more global view of the best or most promising drugs.

    Drugs Approved in U.S. for Colorectal Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Drugs Approved overseas for Colorectal Cancer
  1. Avastin (Bevacizumab)
  2. Camptosar (Irinotecan Hydrochloride) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. .tegafur - uracil (UFT)
  3. Cyramza (Ramucirumab) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . tegarfur gimeracil and oteracil potassium
  4. Eloxatin (Oxaliplatin) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..Polysaccharide K [PSK]
  5. Erbitux (Cetuximab) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..(hot water extract of Trametes Coriolus versicolor)
  6. 5-FU (Fluorouracil Injection)
  7. Fusilev (Leucovorin Calcium) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .....Drugs with significant off label promise
  8. Keytruda (Pembrolizumab)
  9. Lonsurf (Trifluridine and Tipiracil Hydrochloride) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..cimetidine
  10. Vectibix (Panitumumab) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . ....aspirin
  11. Xeloda (Capecitabine) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . ...celecoxib
  12. Yervoy (Ipilimumab) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
  13. Zaltrap (Ziv-Aflibercept)
    Drug Combinations Used in Colorectal Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..Combinations with significant promise
  1. FOLFIRI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..metronomic UFT + LV
  2. FOLFIRINOX . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. metronomic UFT + PSK + cimetidine
  3. FOLFIRINOX+AVASTIN . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . .. . . . . ..metronomic Xeloda + celecoxib
  4. FOLFIRI+AVASTIN
  5. FOLFIRI+ERBITUX
  6. FOLFOX
  7. FOLFOX+AVASTIN
  8. 5FU+LV
  9. XELIRI
  10. XELOX(CAPEOX)
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

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O Stoma Mia
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Re: Preparing a facts & to-do-list for "newcomers"? wet wipes

Postby O Stoma Mia » Mon Apr 08, 2019 10:39 pm

WARNING: Some newcomers may not realize that the so-called "flushable wet wipes" are not really flushable:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43946&p=314621#p314621

In addition, wet wipes are not the best thing to use, especially on tender, irradiated skin, because they are too rough and can exacerbate existing skin problems. It's better to use a jet of warm water for clean-up.
.

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

Postby O Stoma Mia » Fri Apr 12, 2019 1:49 pm

Sometimes newcomers are confused about the differences between genetic testing and genomic testing. This distinction is an important one, especially for those diagnosed with advanced CRC, where it will be essential to do genomic testing on the tumor to help determine the best second-line regimens to try.

The distinction is discussed and clarified in the following thread:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59347&p=470282#p470301

Genetic testing identifies abnormalities or predispositions we have been born with, and how these might affect our health.

Genomic testing refers to the examination of unique abnormalities or mutations that occur in the cancer. Some or all of these mutations may be driving the cancer to grow. In theory, targeting these would be a way to control the cancer. With genomic testing, we can reveal the genomic makeup of abnormalities within the cancer tissue. In other words, for some patients, more targeted precision may now be possible by identifying the genetic profile of a tumor and designing treatment options specifically for that person’s cancer.

Ref: https://wtop.com/cancer-qa/2015/01/difference-genetic-testing-vs-genomic-testing/

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

Postby O Stoma Mia » Sun Apr 14, 2019 1:25 pm

What I've noticed is that some newcomers here are not very familiar with the full range of options available to them on this Forum. Once a newcomer has registered here, he/she will have their own User Control Panel (UCP) where they can customize many features. These features are available each time you log in. However, these features are not accessible if you decide to browse the forum without logging in.

For those who are interested in further customizing their login sessions, here is a list of some of the UCP features that can be accessed by registered users:

List of forum options

Here is a summary of where some the main features are located in the software:

User Control Panel http://coloncancersupport.colonclub.com/ucp.php
Overview
Profile
Board Preferences
Private Messages
Friends & Foes
Profile
Logout http://coloncancersupport.colonclub.com/ucp.php?mode=logout

==
Quick Links

Your posts http://coloncancersupport.colonclub.com/search.php?search_id=egosearch
New posts http://coloncancersupport.colonclub.com/search.php?search_id=newposts
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LPL
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Re: Preparing a facts & to-do-list for "newcomers"?

Postby LPL » Mon Apr 15, 2019 11:29 am

Thank you for all that info OSM <3
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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 NED again Oct-19 :)
:!: 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 & Oct lung mets

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

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

Postby JJH » Sat Feb 29, 2020 9:22 pm

BUMP

There's a new article that just came out in Europe last week with a title that could be translated in English as:
"Cancer: 12 new commandments for having an even better chance of healing".

This is essentially a 12-point checklist to help newly diagnosed cancer patients organize their treatment teams and treatment strategies effectively.

It seems to me that it would be a good idea if a similar checklist could be developed in English that could then be used in Anglophone countries. If anyone has ideas for what would be important items to include on such a check-list, this thread is one place where such ideas could be posted.

Thank you.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

What information do you wish you had at the time of diagnosis?

Postby JJH » Tue Jan 11, 2022 10:12 am

There is a 2021 article in Fight CRC's magazine "BeyondBlue" that summarizes the unmet needs of newly diagnosed CRC patients, as discovered through several focus-group discussions. These unmet need categories are listed below, but they are not listed in any particular prioritized order.

Newly diagnosed patients might want to go through this list and see if there are any categories that particularly express their own feelings at this point in time. If so, maybe they could post a message here and provide some details, and then maybe someone here could provide some insight or suggestions.

    Unmet Needs of Newly Diagnosed CRC Patients: The need for ...
    1. Family and caregiver support that recognizes unique aspects of caring for a CRC patient.
    2. Understanding of side effects at time of diagnosis (chemotherapy, medical marijuana, medication interactions, and ostomy support)
    3. Increased communication and coordination with care teams, especially with patient navigators
    4. Better explanations  of intricacies of cancer diagnosis and care
    5. Access to CRC resources, particularly for those within a specific age group, gender identity, cancer stage, race, ethnicity, etc.
    6. Mental and behavioral support, including counseling and therapy.
    7. Understanding of palliative care, medication adherence, maintenance therapy, and ending treatment.
    8. Treatment and survivorship care, access to plans and supportive care beyond treatment, tools to utilize complementary health and manage cancer as a chronic disease.
    9. Information around genetics. Need for clinicians to provide information and offer genetic testing.
    10. Help with understanding research, risk/recurrence, and legal support/employment.

    References:
    https://fightcolorectalcancer.org/blog/ ... -in-jnccn/
    https://fightcolorectalcancer.org/wp-co ... _12.20.pdf
"The darkest hour is just before the dawn" - Thomas Fuller (1650)


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