NEW-Need some positivity here.

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DonutHead
Posts: 31
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sat Nov 25, 2017 9:20 am

So welcome your thoughts. the new scot trial results are beginning to roll out and though i am no oncologist, appears 3 months or 4 cycles of CAPOX is only .09 % statistically inferior to 6 months or 8 cycles. however, toxicity from 6 months as opposed to 3 months is 3x higher and potentially more debilitating.

i just underwent my 3rd infusion of ox and it was not easy. the nurse had to stop twice as i believe it was going in too fast and was making me flush, with a feeling my heart was drowning. the side effects are different this time as well. not so much first bite or swallowing problems, but my forearms, hands, and now mouth are numb off and on. hiccups are intolerable and nonstop. pins and needles off and on in my toes and fingertips.

while i am not a gambling man, would seem to me a .09% difference in the potential outcome is insignificant, especially considering the current and potentially long term debilitating side effects of extended treatment.

we are all working to beat this disease, but i want to do what is best for me and my family while giving consideration to all of the potential outcomes.

hope everyone had a wonderful thanksgiving! hands are starting to claw up again!
Male 48 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo of 8 cycles Oxaliplatain with 2 weeks of Xeloda (3 week cycle) for 6 months
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

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susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sat Nov 25, 2017 9:25 am

Yes the neuropathy does seem to progress with each infusion. Mine only lasted a couple days after an infusion, but it really kicked in about a month after I finished treatment. I had 6 cycles of Xelox. In the middle of 4 or 8. My oncologist originally scheduled 7 cycles but we cut short so I could have a month before I traveled for my son's wedding. She wasn't concerned at all about me missing that last round.
Last edited by susie0915 on Mon Nov 27, 2017 9:33 am, edited 1 time in total.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

heiders33
Posts: 43
Joined: Sat Nov 04, 2017 11:08 am

Re: NEW-Need some positivity here.

Postby heiders33 » Sat Nov 25, 2017 10:27 am

I am supposed to have six cycles of Capox, but I’m wondering if I can cut the Ox infusions to four due to my hypersensitivity to cold (still have some tingling almost two weeks from infusion). I don’t know if this is a sign that neuropathy could set in earlier, but I’m going to ask my onc on Monday.
35 year-old female
May 2017: Dx at T3N2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Nov 26, 2017 5:29 pm

Chemo #2 done! Disconnect is beautiful. I had to have benedryl after the oxi- numb lips and bit of tongue. Otherwise, some first bite, chemo headache and some cold sensitivity. I'm sure I'll be asleep all day tomorrow. I feel so sad during chemo and at disconnect so free. It such a roller coaster ride.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

DonutHead
Posts: 31
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sun Nov 26, 2017 9:00 pm

hooray!
Male 48 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo of 8 cycles Oxaliplatain with 2 weeks of Xeloda (3 week cycle) for 6 months
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

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susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Mon Nov 27, 2017 9:39 am

teacher2017 wrote:Chemo #2 done! Disconnect is beautiful. I had to have benedryl after the oxi- numb lips and bit of tongue. Otherwise, some first bite, chemo headache and some cold sensitivity. I'm sure I'll be asleep all day tomorrow. I feel so sad during chemo and at disconnect so free. It such a roller coaster ride.

I bet you feel free. I took xeloda so didn't have to have the pump. I'm sure everyone adjusts, but the pills seem to be more convenient. I met with two different oncologists and one would do the pump and the other the pills. I went with the hospital that recommended Xelox because I was most comfortable with the entire team. I'm glad you seem to be doing okay. You're almost done. I also did chemo during the Christmas season, and it was not horrible. I was able to cook Christmas dinner for 25 people, and I had my second infusion on Christmas Eve. Good luck with your next round.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Dec 02, 2017 8:10 pm

HI all- this chemo 2 round was ok but I'm still feeling fatigued days later. Some sore stomach as well. My concern is constipation. Is it normal? I also noticed a blood episode and it had me freaked. My next chemo is Friday. Mentally draining but I'm determined to live. I'm actually considering writing a comical book for cancer patients about the stupid things people say to you. If people actually heard what I'm thinking, I could be rich, I think! Hoping everyone is feeling well.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

DonutHead
Posts: 31
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sat Dec 02, 2017 8:33 pm

hang in there!

my oncologist took me off the oxaliplatin. cancelled all of my remaining treatments. with 3 cycles in, he said it was enough given the toxicity and that it was not worth risking long term side effects. he then said it was really a plus for me and not necessary....so why give it to me?!

i am still experiencing numbness in my arms from the shoulders down and rubbery legs. my balance is slowly returning and equalibrium is coming back. couldn’t walk for a few days and cold sensitivities linger. when i lost control of my jaws and speech, i was done. it was causing too much damage and i hope i get back to some sense of normalcy...this is 11 days following my last IV.

so now i am on just 2000mg xeloda per day. the onc wants it upped to 4000mg daily, but the nausea and fatigue i experience now is nearly unbearable. i am amazed how these drugs are effecting me. told the doctor i was ready to quit and would rather live with some quality of life and take my chances than suffer under the effects of these drugs for another 4 months.

i have an extremely high pain tolerance and have been through alot in my life, but the chemo is worse than anything i have ever experienced. the onc said this was just an insurance policy and that he was convinced i was and would remain NED, but needed to push through with the treatment and be done with it.

so will press on, but this is torture...
Male 48 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo of 8 cycles Oxaliplatain with 2 weeks of Xeloda (3 week cycle) for 6 months
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

DonutHead
Posts: 31
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sat Dec 02, 2017 8:36 pm

constipation is normal...for me, the second round infusion of ox gave me severe abdominal pain. however, it went away and did not return following round 3.

i take senekot tabs when i feel constipated. natural acting and works for me...
Male 48 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo of 8 cycles Oxaliplatain with 2 weeks of Xeloda (3 week cycle) for 6 months
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

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susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sun Dec 03, 2017 10:32 am

I never had constipation, more diarrhea. Make sure you tell your oncologist as maybe she will advise you to take something like miralax. I was always on immodium and lomotil. But I do know contstipation can be a problem.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

User avatar
O Stoma Mia
Posts: 923
Joined: Sat Jun 22, 2013 6:29 am

Stupid things people say

Postby O Stoma Mia » Sun Dec 03, 2017 12:04 pm

teacher2017 wrote:...I'm actually considering writing a comical book for cancer patients about the stupid things people say to you...

About weird things people say, you might want to read what others here have commented on in recent years. It might give you some additional ideas for your book.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53204&p=420586#p420586

Also, here is a blog written by ColonClub member ranger:

Cancer is so funny
http://cancerissofunny.blogspot.com/

and here is the anouncement of her book:
http://coloncancersupport.colonclub.com/viewtopic.php?t=30799&p=196186#p196186

.
.
Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

heiders33
Posts: 43
Joined: Sat Nov 04, 2017 11:08 am

Re: NEW-Need some positivity here.

Postby heiders33 » Sun Dec 03, 2017 12:25 pm

I think I've started having some diarrhea -- waves of pain in the intestine in the mornings usually followed by some liquid output. I assume that it's diarrhea? So hard to tell with the ileostomy. I'm going to mention it to my onc tomorrow. It's been pretty regular in the mornings in the last week before I eat, and has happened a couple other times as well.
35 year-old female
May 2017: Dx at T3N2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Dec 03, 2017 1:02 pm

DonutHead wrote:hang in there!

my oncologist took me off the oxaliplatin. cancelled all of my remaining treatments. with 3 cycles in, he said it was enough given the toxicity and that it was not worth risking long term side effects. he then said it was really a plus for me and not necessary....so why give it to me?!

i am still experiencing numbness in my arms from the shoulders down and rubbery legs. my balance is slowly returning and equalibrium is coming back. couldn’t walk for a few days and cold sensitivities linger. when i lost control of my jaws and speech, i was done. it was causing too much damage and i hope i get back to some sense of normalcy...this is 11 days following my last IV.

so now i am on just 2000mg xeloda per day. the onc wants it upped to 4000mg daily, but the nausea and fatigue i experience now is nearly unbearable. i am amazed how these drugs are effecting me. told the doctor i was ready to quit and would rather live with some quality of life and take my chances than suffer under the effects of these drugs for another 4 months.

i have an extremely high pain tolerance and have been through alot in my life, but the chemo is worse than anything i have ever

experienced. the onc said this was just an insurance policy and that he was convinced i was and would remain NED, but needed to push through with the treatment and be done with it.

so will press on, but this is torture...


You have to do what's right for you! Your onc seems very sure it won't return. Good. That's a beautiful thing. Hang in there. I will do as many folfox as they want to give me. I don't care if I go bald or I never feel my hands again. I just have to be here for another 30 more years. Press on. Insurance is a good thing.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

User avatar
susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sun Dec 03, 2017 1:19 pm

heiders33 wrote:I think I've started having some diarrhea -- waves of pain in the intestine in the mornings usually followed by some liquid output. I assume that it's diarrhea? So hard to tell with the ileostomy. I'm going to mention it to my onc tomorrow. It's been pretty regular in the mornings in the last week before I eat, and has happened a couple other times as well.

I didn't have my ileostomy during chemo. Had to have it reversed after 4-5 weeks when I had a blockage. But you probably are having diarrhea if it seems more liquid than normal. The few weeks I had my ileo the output was always liquid so I'm not sure. I would let your oncologist know. I don't know what they do for that, but be sure you are staying hydrated, and eating foods high in potassium.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

Aqx99
Posts: 279
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sun Dec 03, 2017 1:41 pm

heiders33 wrote:I think I've started having some diarrhea -- waves of pain in the intestine in the mornings usually followed by some liquid output. I assume that it's diarrhea? So hard to tell with the ileostomy. I'm going to mention it to my onc tomorrow. It's been pretty regular in the mornings in the last week before I eat, and has happened a couple other times as well.


A high volume of liquid output is considered diarrhea with an ileostomy. Measure your output, anything over 1000 ml/day is diarrhea and you need to be careful of dehydration. Up your fluid intake.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal


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