Curious and concerned

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Hopegirl
Posts: 40
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Curious and concerned

Postby Hopegirl » Thu Mar 08, 2018 11:22 pm

Hello everyone! Just wondering if anyone is only doing 1 chemo instead of 2 . I was able to do only 3 infusions on oxaliplatin . Do to severe neuropathy . My oncologist stopped after the 3rd one . He did not want my neuropathy to get worst. I’m now only taking Xeloda pills . I’m on my 5th cycle on the pills. Is it true that xeloda pills has more effectiveness . I’m just so scared of reoccurrence by only doing xeloda pills . I wish I was able to finish the 6 cycles of oxaliplatin :cry: what can I do besides the chemo to stay Ned . I go to the gym 5 days sometimes 6 days a week . I do 50 mins to an hour of cardio than some weights . I workout about 1 1/2 hour a day for 5 days . I don’t eat crazy like I use to . Hoping that this will help also . Please advise what else can I do . Thank you
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

NHMike
Posts: 1700
Joined: Fri Jul 21, 2017 3:43 am

Re: Curious and concerned

Postby NHMike » Fri Mar 09, 2018 12:14 am

Vitamin D3 if you're deficient and tree nuts.

I've done four cycles and either need a chemo break or need to drop the Oxaliplatin.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Mercy110
Posts: 105
Joined: Wed Aug 16, 2017 12:13 am

Re: Curious and concerned

Postby Mercy110 » Fri Mar 09, 2018 12:24 am

My mum has tried xeloda pills but there is no use. I guess it's usefulness depends. We do have another chemo plan called xelox but I forgot if there is oxalipatin. The doc used to tell us that injection of drugs is more direct than pills so I guess you can ask for nore options.

As for reourrence, I think you should not worry too much although it is very difficult to do so. Find something you interested like gathering with friends or travelling so that you forget the cancer thing for a while. Happiness helps. God bless you.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

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O Stoma Mia
Posts: 1426
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad:

Inhibiting cancer metastasis

Postby O Stoma Mia » Fri Mar 09, 2018 1:26 am

Hopegirl wrote:Hello everyone! Just wondering if anyone is only doing 1 chemo instead of 2 . I was able to do only 3 infusions on oxaliplatin ...

I did only 4 cycles of oxalyplatin and 4 cycles of Xeloda. That's all. My doctor took me off all chemo after that.

That was 5 years ago. I have been doing 0 chemo since then.

At that point in time I began following an exercise and diet regimen much like the one you described, but including green tea as my beverage of choice. I also supplemented with probiotics, baby aspirin, vitamin D3, vitamin B12 and some other products like turmeric/curcumin and fish oil capsules that I got at the local health food store.

You can get a good idea of the non-chemo options available to you by reading some of the articles posted on the Life Extension Foundation website, for example:

http://www.lifeextension.com/Protocols/Cancer/Colorectal/Page-01
.
http://www.lifeextension.com/Protocols/Cancer/Cancer-Critical-Factors/Page-01 (see Step Ten: "Inhibiting Cancer Metastasis" at the bottom of Page-02)


Also, you can try adding tree nuts to your diet:

http://www.agrilicious.org/local/nuts/california/modesto/farmers-markets
Last edited by O Stoma Mia on Fri Mar 09, 2018 3:40 am, edited 1 time in total.

weisssoccermom
Posts: 5868
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Curious and concerned

Postby weisssoccermom » Fri Mar 09, 2018 3:00 am

11+ years ago, when I was undergoing chemo, I started on XELOX (Xeloda + oxaliplatin)...ONE cycle only due to SEVERE reaction. I freaked out when my doctor told me NO MORE OXI!!! I felt that I was doomed....that somehow the oxi was the miracle drug. Onc told me that the Xeloda does the majority of the work anyway...and honestly, he felt that at my stage, oxi was overkill but I had INSISTED on having it.

Fast forward.....I finished up my cycles of Xeloda and have been cancer free ever since my surgery on 4/20/2007. Next month will be 11 years since that surgery and in June, I will 'celebrate' 12 years since my cancer diagnosis.

Is it possible for someone to be in long term remission (I still don't like using the term cured....would prefer long long term remission) with just Xeloda? Yes it is. Is it possible for someone to get a recurrence with the oxi added in? You betcha. There is no miracle drug that 100% of the time will STOP cancer in its tracks. You have to do what is best for you.....but taking a drug like oxi when you have a severe reaction is NOT in your best interest. If your doc has determined that you need to be off of it....then trust him.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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peanut_8
Posts: 2266
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Curious and concerned

Postby peanut_8 » Fri Mar 09, 2018 9:46 am

Hopegirl,

Since you're unable to continue FOLFOX due to the oxaliplatin and neuropathy, you could discuss taking FOLFIRI with your oncologist, which used irinotecan instead of oxi.

FOLFIRI is a chemotherapy regimen for treatment of colorectal cancer. It is made up of the following drugs:[1]
FOL – folinic acid (leucovorin), a vitamin B derivative used as a "rescue" drug for high doses of the drug methotrexate, but increases the cytotoxicity of 5-fluorouracil;
F – fluorouracil (5-FU), a pyrimidine analog and antimetabolite which incorporates into the DNA molecule and stops synthesis; and
IRI – irinotecan (Camptosar), a topoisomerase inhibitor, which prevents DNA from uncoiling and duplicating.
wikipedia

Another thing that may put your mind slightly at ease is that 5-FU is the drug that does the majority of work in the FOLFOX combination. I've seen varying degrees of effectiveness attributed to the oxaliplatin in the combo ranging from 2-5%. So by taking 5-FU without the oxi, your still getting the big anti-cancer gun.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Hopegirl
Posts: 40
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Curious and concerned

Postby Hopegirl » Fri Mar 09, 2018 7:22 pm

Thank you so much everyone for your great advise and positive answers. I’m so thankful to have found this forum . I will find out what or if I have to do more Chemo’s once I’m done with my xeloda pills. What is the best test to ask for once I’m done taking my xeloda pills. What test shows everything or more . Pet scan? CT scan? Thank you
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

User avatar
O Stoma Mia
Posts: 1426
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad:

Re: Curious and concerned

Postby O Stoma Mia » Sat Mar 10, 2018 2:00 am

Hopegirl wrote:...What is the best test to ask for once I’m done taking my xeloda pills. What test shows everything or more . Pet scan? CT scan? Thank you

When you are finally done with chemo I think you should first have a comprehensive physical exam that tests the status of all major body systems (digestive, cardiovascular, circulatory, pulmonary, renal, endocrine, etc) because chemo can cause damage to many different parts of the body, and you need for your body to be in top condition post-chemo so that you can fight off whatever might happen later on.
O Stoma Mia wrote:I read somewhere (but I can't remember where) that the two most frequent complaints post-chemo are (1) extreme fatigue, and (2) elevated anxiety levels. Both of these are due to enduring aftereffects of treatment. But there are other long-term effects, too, that may need to be addressed:

Late Effects of Cancer Treatment
https://www.livestrong.org/we-can-help/healthy-living-after-treatment/late-effects-of-cancer-treatment

The Effects of Chemotherapy on Your Body
https://www.healthline.com/health/cancer/effects-on-body#1

Most major cancer hospitals have survivorship programs in place to address such issues during the 5-year post-treatment surveillance period.

O Stoma Mia wrote:After your last round of chemo who will be in charge of your comprehensive 5-year survivorship plan? Your oncologidt? Your surgeon? Your GP? Hopefully it wil be somebody who cares about your overall QOL over the next 5 years

Somebody needs to be in charge and needs to create a comprehensive Survivorship Care Plan (SCP) for you. Who will that be?

NOTE: The "SCP- Survivorship Care Plan" is being featured in a special session in the up-coming Call-on-Congress meeting:

Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Session Presenter:
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer


How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan? The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.

Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources

Ref: https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/11/2018-ConC-Breakout-Sessions.pdf


Also, ASCO has a list of recommended questions to ask your doctor as you are transitioning from trestment to follow-up. Click on the Reference link at the very bottom to know more.
.
Questions to Ask the Doctor
To learn more about follow-up care for colorectal cancer, consider asking the following questions of your health care team:

What is my risk of recurrence?
What follow-up tests will I need, and how often will I need them?
Who will be coordinating my follow-up care?
If I move or need to switch doctors, how do I make sure to continue my recommended follow-up care schedule?
How often will I need CEA testing? Where will it be done?
How often do I need a CT scan? Where will it be done?
How often do I need a colonoscopy? Who will do it and where will it be done?
How often do I need a rectosigmoidoscopy (rectal cancer only)?
What signs and symptoms should I watch for?
What type of follow-up care do I need beyond five years after treatment?
Where can I find more information about follow-up care?

Ref: https://www.journeyforward.org/follow-care-colorectal-cancer

Hopegirl
Posts: 40
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Curious and concerned

Postby Hopegirl » Sun Mar 11, 2018 12:17 am

O Stoma Mia wrote:
Hopegirl wrote:...What is the best test to ask for once I’m done taking my xeloda pills. What test shows everything or more . Pet scan? CT scan? Thank you

When you are finally done with chemo I think you should first have a comprehensive physical exam that tests the status of all major body systems (digestive, cardiovascular, circulatory, pulmonary, renal, endocrine, etc) because chemo can cause damage to many different parts of the body, and you need for your body to be in top condition post-chemo so that you can fight off whatever might happen later on.
O Stoma Mia wrote:I read somewhere (but I can't remember where) that the two most frequent complaints post-chemo are (1) extreme fatigue, and (2) elevated anxiety levels. Both of these are due to enduring aftereffects of treatment. But there are other long-term effects, too, that may need to be addressed:

Late Effects of Cancer Treatment
https://www.livestrong.org/we-can-help/healthy-living-after-treatment/late-effects-of-cancer-treatment

The Effects of Chemotherapy on Your Body
https://www.healthline.com/health/cancer/effects-on-body#1

Most major cancer hospitals have survivorship programs in place to address such issues during the 5-year post-treatment surveillance period.

O Stoma Mia wrote:After your last round of chemo who will be in charge of your comprehensive 5-year survivorship plan? Your oncologidt? Your surgeon? Your GP? Hopefully it wil be somebody who cares about your overall QOL over the next 5 years

Somebody needs to be in charge and needs to create a comprehensive Survivorship Care Plan (SCP) for you. Who will that be?

NOTE: The "SCP- Survivorship Care Plan" is being featured in a special session in the up-coming Call-on-Congress meeting:

Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Session Presenter:
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer


How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan? The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.

Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources

Ref: https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/11/2018-ConC-Breakout-Sessions.pdf


Also, ASCO has a list of recommended questions to ask your doctor as you are transitioning from trestment to follow-up. Click on the Reference link at the very bottom to know more.
.
Questions to Ask the Doctor
To learn more about follow-up care for colorectal cancer, consider asking the following questions of your health care team:

What is my risk of recurrence?
What follow-up tests will I need, and how often will I need them?
Who will be coordinating my follow-up care?
If I move or need to switch doctors, how do I make sure to continue my recommended follow-up care schedule?
How often will I need CEA testing? Where will it be done?
How often do I need a CT scan? Where will it be done?
How often do I need a colonoscopy? Who will do it and where will it be done?
How often do I need a rectosigmoidoscopy (rectal cancer only)?
What signs and symptoms should I watch for?
What type of follow-up care do I need beyond five years after treatment?
Where can I find more information about follow-up care?

Ref: https://www.journeyforward.org/follow-care-colorectal-cancer

Thank you . I will definitely ask all these questions for sure
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always


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