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NHMike
Posts: 1567
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Wed May 23, 2018 6:31 am

Caat55 wrote:
NHMike wrote:
Caat55 wrote:The CBD helped the nausea but the lump is still in my chest. Feels like When you swallow air but big time. I called oncologist to see about a reduction but am afraid even a small change will reduce my possibility of a cure.
S


Did you have a Pathological Complete Response with surgery?

Yes, pathology report was clean. T2n0, clean margins, just scar tissue.


i'm 3B and my Dana Farber Oncologist told me that I'm in the best part of the 69% survival rate because of the PCR from surgical pathology. That and the research showing that the difference between full Adjuvant chemo and half Adjuvant chemo is less than 1% in survival rates. I will supplement with tree nuts (I think that eating two ounces of tree nuts per week has a higher recurrence prevention rate than the Oxaliplatin does).

I think that you have to look at the research for your individual case. A friend on another board only did three cycles because he wanted quality of life along with quantity of life. But he's in a different place being about 15 years older than I am. He's also Stage 2 and the decision for Stage 2 is definitely different for Stage 3.

I can't tell anyone what to do because circumstances are different for every person but I recommend talking to your oncologist for an overall assessment of risks.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

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susie0915
Posts: 821
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New Member here on the forum

Postby susie0915 » Wed May 23, 2018 9:00 am

This is such a tough decision. I was originally diagnosed stage 2a rectal and also had a good response to preadjuvant therapy. Only scar tissue remained and pet scan was negative before surgery. After surgery pathology came back showing no lymph nodes, clean margins but did have minimal residual cancer cells. My oncologist did recommend chemo after as she could not guarantee no cancer cells got into the bloodstream. I did 6 rounds of Xelox because I didn't want to wonder "what if". I do have mild neuropathy two years later. I deal with it, I can run and pretty much do anything I want but it is annoying. It is so difficult to know what to do, chemo is not fun.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1567
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Wed May 23, 2018 9:05 am

susie0915 wrote:This is such a tough decision. I was originally diagnosed stage 2a rectal and also had a good response to preadjuvant therapy. Only scar tissue remained and pet scan was negative before surgery. After surgery pathology came back showing no lymph nodes, clean margins but did have minimal residual cancer cells. My oncologist did recommend chemo after as she could not guarantee no cancer cells got into the bloodstream. I did 6 rounds of Xelox because I didn't want to wonder "what if". I do have mild neuropathy two years later. I deal with it, I can run and pretty much do anything I want but it is annoying. It is so difficult to know what to do, chemo is not fun.


If the difference between 4 rounds and 8 rounds is less than 1%, then what you did is 1/2 of that. I'd just keep eating tree nuts if you're still worried about it. I do see great improvements in treating CRC in the next couple of years.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

Caat55
Posts: 484
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Wed May 23, 2018 9:44 am

susie0915 wrote:This is such a tough decision. I was originally diagnosed stage 2a rectal and also had a good response to preadjuvant therapy. Only scar tissue remained and pet scan was negative before surgery. After surgery pathology came back showing no lymph nodes, clean margins but did have minimal residual cancer cells. My oncologist did recommend chemo after as she could not guarantee no cancer cells got into the bloodstream. I did 6 rounds of Xelox because I didn't want to wonder "what if". I do have mild neuropathy two years later. I deal with it, I can run and pretty much do anything I want but it is annoying. It is so difficult to know what to do, chemo is not fun.




Susie,
, did you do the full dose, if so for all six treatments,?
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

Eleda
Posts: 133
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: New Member here on the forum

Postby Eleda » Thu May 24, 2018 1:48 am

Hi Mike, aren't all nuts from a tree are u speeching of a pictular nut???? And if so do u just crush them as its a no no for my illeostomy ATM
Thanks Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 1567
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Thu May 24, 2018 7:40 am

Eleda wrote:Hi Mike, aren't all nuts from a tree are u speeching of a pictular nut???? And if so do u just crush them as its a no no for my illeostomy ATM
Thanks Adele


Peanuts aren't tree nuts. All of the other common and less common ones come from trees.

I just eat them. Butters are probably more effective. I haven't had any problems with nuts in the illeostomy bag but that may vary from person to person.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

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susie0915
Posts: 821
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New Member here on the forum

Postby susie0915 » Thu May 24, 2018 8:05 am

Caat55 wrote:
susie0915 wrote:This is such a tough decision. I was originally diagnosed stage 2a rectal and also had a good response to preadjuvant therapy. Only scar tissue remained and pet scan was negative before surgery. After surgery pathology came back showing no lymph nodes, clean margins but did have minimal residual cancer cells. My oncologist did recommend chemo after as she could not guarantee no cancer cells got into the bloodstream. I did 6 rounds of Xelox because I didn't want to wonder "what if". I do have mild neuropathy two years later. I deal with it, I can run and pretty much do anything I want but it is annoying. It is so difficult to know what to do, chemo is not fun.




Susie,
, did you do the full dose, if so for all six treatments,?

My xeloda was reduced a couple times due to diarrhea. I didn't have my ileo so could be tough. My surgeon reversed my ileo 5 weeks after my resection when I had a blowel blockage and he had to do surgery to remove scar tissue. My neuropathy really didn't kick in until a month after I finished treatment. I may get a little tingling the day or two after an infusion then I would be fine. So my oxi really wasn't reduced.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Eleda
Posts: 133
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: New Member here on the forum

Postby Eleda » Thu May 24, 2018 8:22 am

Thanks Mike, was curious to see if it was a pictular nut, I'll buy some this week
Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 1567
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Thu May 24, 2018 8:34 am

Purpose Observational studies have reported increased colon cancer recurrence and mortality in patients with states of hyperinsulinemia, including type 2 diabetes, obesity, sedentary lifestyle, and high glycemic load diet. Nut intake has been associated with a lower risk of type 2 diabetes, metabolic syndrome, and insulin resistance. However, the effect of nut intake on colon cancer recurrence and survival is not known. Patients and Methods We conducted a prospective, observational study of 826 eligible patients with stage III colon cancer who reported dietary intake on food frequency questionnaires while enrolled onto a randomized adjuvant chemotherapy trial. Using Cox proportional hazards regression, we assessed associations of nut intake with cancer recurrence and mortality. Results After a median follow-up of 6.5 years, compared with patients who abstained from nuts, individuals who consumed two or more servings of nuts per week experienced an adjusted hazard ratio (HR) for disease-free survival of 0.58 (95% CI, 0.37 to 0.92; Ptrend = .03) and an HR for overall survival of 0.43 (95% CI, 0.25 to 0.74; Ptrend = .01). In subgroup analysis, the apparent benefit was confined to tree nut intake (HR for disease-free survival, 0.54; 95% CI, 0.34 to 0.85; Ptrend = .04; and HR for overall survival, 0.47; 95% CI, 0.27 to 0.82; Ptrend = .04). The association of total nut intake with improved outcomes was maintained across other known or suspected risk factors for cancer recurrence and mortality. Conclusion Diets with a higher consumption of nuts may be associated with a significantly reduced incidence of cancer recurrence and death in patients with stage III colon cancer.

https://www.ncbi.nlm.nih.gov/pubmed/29489429

Study PDF: http://ascopubs.org/doi/pdfdirect/10.12 ... 17.75.5413
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

retiredteacher
Posts: 86
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Wed Jun 13, 2018 5:44 pm

Okay wise people, help me out. Here's the deal: I cannot handle the capecetibine. The neoadjuvant chemo rad was tough enough with the radiation, but I had weeks of severe diarrhea as well - have already had one cycle of the CAPOX delayed by one week due to uncontrollable diarrhea/pain - ended up taking codeine/Tylenol with lomotil to get it under control. In the middle of my 4th cycle Saturday I just quit taking the capecetibine - no diarrhea this time, just stabbing gut pain right at the diaphragm ... throbbing constantly and feeling like a bowling ball in there ... honestly hurt even to walk. Called Dr. Monday, he said to stay off the capecetibine and call him Thursday, which is tomorrow. This pain starts with and seems associated with an acid burn like heartburn. Happened enough now that I can link it to the cap; have talked to Dr. about it last month and we agreed I would just power through it, but now I don't see how ... or is this normal to be on the bed curled up; I don't think so. No one said this would be fun, and I feel a guilty whining about a tummy ache knowing what so many of you have been through.

The oxi side effects are pretty hideous, but as advertised, and I am handling them OK. They are taking at least two weeks to clear, and the feet are not clearing at all. Icepicks in my toes.

Any insights? Talking to hubby, wondering if we can just wind up the chemo now, or what.

No initial diagnosis, but MRI post neoadjuvant noted tumor bed "markedly T2", but came out T1 surgical path. G1, well differentiated, no evidence perineurial or lymphovascular ypT1N0M0. (Stanford)

I'm stuck between asking to call it quits or ask to flip over to a FOLFOX for one or 2 cycles. I will always follow my oncologist's advice - have I overlooked something?
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

NHMike
Posts: 1567
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Wed Jun 13, 2018 6:52 pm

Good term for Oxaliplating: "hideous".

I had my last does of Adjuvant Xeloda this morning and I'm happy to be done with it (hope I never see it again). I have hands and feet that are annoying but that's about it. I don't ever recall pain from it outside arthritic feelings in my hands, feet and calves. So it looks like the Xeloda is definitely causing problems for you. I think that I'd consider FOLFOX on the pump. I believe that the 5FU does more of the work at preventing recurrence than the Oxaliplatin. I don't know if the problem for you is the 5FU itself of the Xeloda. My oncologist told me that one hits your liver and the other hits your kidneys, but I don't remember which is which.

I think that what you're describing is uncommon with the pills.

I hope that you can work something out with your Oncologist.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

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Atoq
Posts: 282
Joined: Wed Oct 25, 2017 9:31 am

Re: New Member here on the forum

Postby Atoq » Thu Jun 14, 2018 12:33 am

It is really difficult to give advice, how many rounds were you supposed to do? I would really describe your situation and all the side effects and follow your oncologist advice. Switching to Folfox seems also a good alternative if you want to finish your treatment. Protocols are different and studies suggest we could have shorter adjuvant chemo and your staging and response are putting you in a lower risk category.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery

retiredteacher
Posts: 86
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Thu Jun 14, 2018 7:49 am

Thanks for the thoughts Mike and Claudia - you two are such amazing and inspirational warriors. Onc said he would be happy with five rounds, have completed four (short capecetibine on the fourth.) Doc and I agreed together that a case could be made for wait and watch, but neither of us were comfortable with that.
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

User avatar
susie0915
Posts: 821
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New Member here on the forum

Postby susie0915 » Thu Jun 14, 2018 8:22 am

I did 6 rounds but my xeloda was reduced 2-3 times due to diarrhea. I was suppose to do 7 rounds but oncologist was fine with me stopping at 6 as I wanted a month to recover for my sons wedding. I don't know if the xeloda can be reduced more, or switching to the pump would be better. I think with the pump there is 2 weeks in between infusions vs. 3. I remember my last round I woke up and dreaded going. Diarrhea was all I really experienced with xeloda, but really didn't have any issues with diarrhea during chemo/radiation when I took it. I know your oncologist has already reduced the xeloda but maybe another reduction would be helpful for one more round. I hope you can find some relief. I also agree doing what your oncologist recommends is probably best.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

User avatar
susie0915
Posts: 821
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New Member here on the forum

Postby susie0915 » Thu Jun 14, 2018 8:27 am

retiredteacher wrote:Thanks for the thoughts Mike and Claudia - you two are such amazing and inspirational warriors. Onc said he would be happy with five rounds, have completed four (short capecetibine on the fourth.) Doc and I agreed together that a case could be made for wait and watch, but neither of us were comfortable with that.

The wait and watch protocol is interesting to me also, but could be stressful. After chemo/radiation my surgeon did a sigmoidoscopy and said all that was left was scar tissue. Pet scan also showed no cancer, especially in distal rectal area. He said I may not need chemo after surgery depending on pathology report. My pathology report did show minimal residual cancer cells, so the oncologist recommended chemo as she could not guarantee no cancer cells got into the bloodstream. If I did wait and watch I'm not sure how long it would take for the minimal cancer cells that were left would have seen or discovered. I know many are doing wait and watch and I think it really does provide quality of life, but at the same time close and constant monitoring is definitely necessary. I understand you not being comfortable going that route.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change


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