NEW-Need some positivity here.

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susie0915
Posts: 425
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Wed Nov 08, 2017 8:29 pm

Glad everything went well. I had the first bite syndrome. It didn't last very long may be a couple days.
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 since
surgery to repair blockage. 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

teacher2017
Posts: 119
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Nov 08, 2017 10:33 pm

Robino1 wrote:
teacher2017 wrote:Hi all-
Day 1 of round 1 of folfox. Completely uneventful today. My mind is my worst enemy! The port access was not felt at all but the wait was horrific! Then we were brought to the chemo suite. 85 min of Oxi/Flou. Then home with the pump. It's small and does not make any noise. Got some first bite but no cold sensitivity yet. Hoping tomorrow is no nausea or cold issues. But I must say I have a really big headache!
Thanks for all your advice,
Lydia


Did you get a prescription for anti nausea meds? I take a pill in the afternoon that my pump is disconnected. They give you anti nausea meds in the port. That usually lasts 3 days. I haven't needed to take another pill till the next go round. I am still using my first prescription pills.

If you stay on top of nausea, you win :D It's harder to get a handle after the fact.


Thanks for that! I will totally take it early! Also drinking tons of water- I'm floating away!
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!

Aunally Maloo
Posts: 4
Joined: Thu Nov 09, 2017 3:57 am

Adjuvant Therapy after colectomy - 8 cycles or 12 cycles

Postby Aunally Maloo » Thu Nov 09, 2017 4:47 am

Hello Support Forum ,

My wife has been diagnosed with Colon cancer and had a colectomy resection done with 15cm of sigmoid colon removed . she has been advised 12 cycles of adjuvant therapy and has completed 5 cycles. She is coping well except for severe Pins and needles ( Peripheral neuropathy ). The pathology report indicated T1N1M0.

Should she continue with the remaining 7 cycles of adjuvant chemotherapy to full 12 cycles or can stop at 8 cycles.

regards

Aunally Maloo

Beckster
Posts: 177
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Thu Nov 09, 2017 5:14 am

Happy to hear that everything went well yesterday! You got this!

Beckster
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8
Clear Colonoscopy 10/17 :D

teacher2017
Posts: 119
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: Adjuvant Therapy after colectomy - 8 cycles or 12 cycles

Postby teacher2017 » Thu Nov 09, 2017 1:37 pm

Aunally Maloo wrote:Hello Support Forum ,

My wife has been diagnosed with Colon cancer and had a colectomy resection done with 15cm of sigmoid colon removed . she has been advised 12 cycles of adjuvant therapy and has completed 5 cycles. She is coping well except for severe Pins and needles ( Peripheral neuropathy ). The pathology report indicated T1N1M0.

Should she continue with the remaining 7 cycles of adjuvant chemotherapy to full 12 cycles or can stop at 8 cycles.

regards

Aunally Maloo


Hi-
I think that you should do whatever the oncologist suggests! What stage? Tell the onc about the neuropathy - they can adjust the regimen.
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!

Aqx99
Posts: 239
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Adjuvant Therapy after colectomy - 8 cycles or 12 cycles

Postby Aqx99 » Thu Nov 09, 2017 1:49 pm

Aunally Maloo wrote:Hello Support Forum ,

My wife has been diagnosed with Colon cancer and had a colectomy resection done with 15cm of sigmoid colon removed . she has been advised 12 cycles of adjuvant therapy and has completed 5 cycles. She is coping well except for severe Pins and needles ( Peripheral neuropathy ). The pathology report indicated T1N1M0.

Should she continue with the remaining 7 cycles of adjuvant chemotherapy to full 12 cycles or can stop at 8 cycles.

regards

Aunally Maloo


Talk with her oncologist about reducing the dose to prevent further problems. I have had my doses reduced twice due to side effects.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

User avatar
susie0915
Posts: 425
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Thu Nov 09, 2017 2:18 pm

I had 6 rounds of Xelox. I was originally scheduled for 7, but I asked my oncologist if it would okay to stop at 6. My son was getting married out of town, and I wanted a month to recuperate from chemo before the wedding. She felt it would be fine. I told her I would do the 7th round if she felt it would make a difference in my response to treatment. She felt the one round wouldn't be problem to miss. I'm not sure if four rounds would be advisable to miss. You may want to ask her oncologist if he/she can adjust the dosage. I know my dosage levels were reduced due to some side effects.
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 since
surgery to repair blockage. 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

Aunally Maloo
Posts: 4
Joined: Thu Nov 09, 2017 3:57 am

Re: Adjuvant Therapy after colectomy - 8 cycles or 12 cycles

Postby Aunally Maloo » Fri Nov 10, 2017 3:49 am

teacher2017 wrote:
Aunally Maloo wrote:Hello Support Forum ,

My wife has been diagnosed with Colon cancer and had a colectomy resection done with 15cm of sigmoid colon removed . she has been advised 12 cycles of adjuvant therapy and has completed 5 cycles. She is coping well except for severe Pins and needles ( Peripheral neuropathy ). The pathology report indicated T1N1M0.

Should she continue with the remaining 7 cycles of adjuvant chemotherapy to full 12 cycles or can stop at 8 cycles.

regards

Aunally Maloo


Hi-
I think that you should do whatever the oncologist suggests! What stage? Tell the onc about the neuropathy - they can adjust the regimen.


Thanks.. She is Stage IIIB colon cancer with only 1 Lymph node Postive ( N1) with no metastases ( M0) . T1N1M0.

Aunally Maloo
Posts: 4
Joined: Thu Nov 09, 2017 3:57 am

Re: Adjuvant Therapy after colectomy - 8 cycles or 12 cycles

Postby Aunally Maloo » Fri Nov 10, 2017 3:58 am

Aqx99 wrote:
Aunally Maloo wrote:Hello Support Forum ,

My wife has been diagnosed with Colon cancer and had a colectomy resection done with 15cm of sigmoid colon removed . she has been advised 12 cycles of adjuvant therapy and has completed 5 cycles. She is coping well except for severe Pins and needles ( Peripheral neuropathy ). The pathology report indicated T1N1M0.

Should she continue with the remaining 7 cycles of adjuvant chemotherapy to full 12 cycles or can stop at 8 cycles.

regards

Aunally Maloo


Talk with her oncologist about reducing the dose to prevent further problems. I have had my doses reduced twice due to side effects.


Thanks . do you mean reducing the strength of the dosage or number of cycles. She also has weakness and fatigue and spends a lot of time sleeping.

Aunally Maloo
Posts: 4
Joined: Thu Nov 09, 2017 3:57 am

Re: NEW-Need some positivity here.

Postby Aunally Maloo » Fri Nov 10, 2017 3:59 am

susie0915 wrote:I had 6 rounds of Xelox. I was originally scheduled for 7, but I asked my oncologist if it would okay to stop at 6. My son was getting married out of town, and I wanted a month to recuperate from chemo before the wedding. She felt it would be fine. I told her I would do the 7th round if she felt it would make a difference in my response to treatment. She felt the one round wouldn't be problem to miss. I'm not sure if four rounds would be advisable to miss. You may want to ask her oncologist if he/she can adjust the dosage. I know my dosage levels were reduced due to some side effects.



Thanks for the information.

teacher2017
Posts: 119
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Nov 10, 2017 7:29 am

Beckster wrote:Happy to hear that everything went well yesterday! You got this!

Beckster


Thank you! I feel like I'm hooked up to the matrix though. I get disconnected today. Let's see how I feel after today. I'll be happy to get this thing off.
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: 425
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Fri Nov 10, 2017 8:22 am

teacher2017 wrote:
Beckster wrote:Happy to hear that everything went well yesterday! You got this!

Beckster


Thank you! I feel like I'm hooked up to the matrix though. I get disconnected today. Let's see how I feel after today. I'll be happy to get this thing off.

I did the xeloda with the oxi infusions. I know the first oncologist I talked to talked about the pump. Were you able to work with the pump, or did you just plan to stick around the house the days you had it? I wonder what makes some do the pump and others choose the pills.
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 since
surgery to repair blockage. 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

Robino1
Posts: 172
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Fri Nov 10, 2017 8:53 am

For me it wasn't a choice. I think stage IV had something to do with that. LOL

As far as doing stuff with it on, mine goes into a bag of sorts with a shoulder strap. If I'm busy cleaning etc... I just carry across the body. Like you do a purse when you have it on your shoulder then put it over your head to the other shoulder.

I think most people just think it is a purse, if you're a woman. I tuck the excess tubing into the 'purse' so very little of what comes out from under my shirt shows. It doesn't slow me down at all.

I go out shopping and out to eat with it on. I have an actual purse big enough to hold the pump 'purse' so I just tuck it in there while walking around in public. The tubing goes under my shirt and only about 3 inches is visible but since it is clear tubing, nobody really sees the tubing going from my shirt hem to the purse.

Even if they did notice, I just don't care. I refuse to let this thing called cancer slow me down! 8)
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo req
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites causing the distention.
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7

User avatar
susie0915
Posts: 425
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Fri Nov 10, 2017 2:36 pm

Robino1 wrote:For me it wasn't a choice. I think stage IV had something to do with that. LOL

As far as doing stuff with it on, mine goes into a bag of sorts with a shoulder strap. If I'm busy cleaning etc... I just carry across the body. Like you do a purse when you have it on your shoulder then put it over your head to the other shoulder.

I think most people just think it is a purse, if you're a woman. I tuck the excess tubing into the 'purse' so very little of what comes out from under my shirt shows. It doesn't slow me down at all.

I go out shopping and out to eat with it on. I have an actual purse big enough to hold the pump 'purse' so I just tuck it in there while walking around in public. The tubing goes under my shirt and only about 3 inches is visible but since it is clear tubing, nobody really sees the tubing going from my shirt hem to the purse.

Even if they did notice, I just don't care. I refuse to let this thing called cancer slow me down! 8)

Thanks Robin. We do have to find ways to just make things work. You really have it figured out.
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 since
surgery to repair blockage. 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

teacher2017
Posts: 119
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Nov 10, 2017 3:52 pm

susie0915 wrote:
teacher2017 wrote:
Beckster wrote:Happy to hear that everything went well yesterday! You got this!

Beckster


Thank you! I feel like I'm hooked up to the matrix though. I get disconnected today. Let's see how I feel after today. I'll be happy to get this thing off.

I did the xeloda with the oxi infusions. I know the first oncologist I talked to talked about the pump. Were you able to work with the pump, or did you just plan to stick around the house the days you had it? I wonder what makes some do the pump and others choose the pills.


I chose the pump not that there was much choice. The onc said that since I had a lot of LNs involved she wasnted to see this go right into my blood stream. That the pills may not be absorbed. I didn't want to take a chance and I could tell the onc was really pushing for it. So I will do anything this onc says. I stayed home for three days out of fear. But I now know that that isn't necessary. I will venture out. I jus tdont want my students to know. I don't want the questions. It is what it is.
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!


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