NEW-Need some positivity here.

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susie0915
Posts: 945
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Thu Oct 05, 2017 10:24 am

I’m not sure if folfox is standard for stage 3. The first oncologist I saw said folfox,the second xelox. But I was stage 2. I thought they worked the same. I thought it was maybe the preference of doctor. Maybe I’m wrong. I did the xelox
Last edited by susie0915 on Thu Oct 05, 2017 3:15 pm, edited 1 time in total.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Thu Oct 05, 2017 2:44 pm

teacher2017 wrote:
DonutHead wrote:Sorry, everyone...I am new to this so will surely make mistakes. Earlier I wrote the oncologist suggested FOLFOX for intravenous infusion. I was wrong. It’s actually an infusion of Oxaliplatin alone over the course of 12 cycles (6 months) and not the other two drugs that make up FOLFOX. The XELODA regimine remains the same. Sorry for the error and any confusion I amy have caused.

DH


Why Xeloda ? What's the difference? I really think that would work for me. I meet tomorrow with the onc. Let's see what they suggest. Seems like FOLFOX is standard treatment for stage 3.



I think that we discussed this in a previous conversation. Folfox and Xelox are the treatment for stage III and some stage II colon cancers. I had Xelox for stage IIA because I wanted to take the pill form of 5/FU instead of the infusion. Whatever one you choose, you will not loose your hair and should be able to return to work on a modified schedule.

Folfox- Oxaliplatin and IV 5/FU every other week. 12 cycles total 6 months
Xelox or CapeOx- Oxaliplatin and pill form of 5/FU every 3 weeks for a total of 8 cycles over 6 months.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Thu Oct 05, 2017 2:53 pm

teacher2017 wrote:
DonutHead wrote:Sorry, everyone...I am new to this so will surely make mistakes. Earlier I wrote the oncologist suggested FOLFOX for intravenous infusion. I was wrong. It’s actually an infusion of Oxaliplatin alone over the course of 12 cycles (6 months) and not the other two drugs that make up FOLFOX. The XELODA regimine remains the same. Sorry for the error and any confusion I amy have caused.

DH


Why Xeloda ? What's the difference? I really think that would work for me. I meet tomorrow with the onc. Let's see what they suggest. Seems like FOLFOX is standard treatment for stage 3.


According to the NCCN guidelines booklet that I posted here before, either treatment can be used for stage 3. I think doctors take into account the lifestyle of the patient, as well as other factors when deciding which treatment to recommend. I am on CapeOx (capecitabine is the generic of Xeloda) because I am still working full-time through my treatment. It is much easier for me to get an infusion once every 3 weeks and take pills for 2 weeks, than have to get infusions every 2 weeks and be hooked up to a pump for 2 days after. My oncologist actually suggested switching me over to FOLFOX after I started getting hand-foot symptoms during my second cycle. Instead we lowered the dose of capecitabine to see if that would help. I have not had any issues since the dose was lowered.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
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 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Oct 05, 2017 5:38 pm

Beckster wrote:
teacher2017 wrote:
DonutHead wrote:Sorry, everyone...I am new to this so will surely make mistakes. Earlier I wrote the oncologist suggested FOLFOX for intravenous infusion. I was wrong. It’s actually an infusion of Oxaliplatin alone over the course of 12 cycles (6 months) and not the other two drugs that make up FOLFOX. The XELODA regimine remains the same. Sorry for the error and any confusion I amy have caused.

DH


Why Xeloda ? What's the difference? I really think that would work for me. I meet tomorrow with the onc. Let's see what they suggest. Seems like FOLFOX is standard treatment for stage 3.



I think that we discussed this in a previous conversation. Folfox and Xelox are the treatment for stage III and some stage II colon cancers. I had Xelox for stage IIA because I wanted to take the pill form of 5/FU instead of the infusion. Whatever one you choose, you will not loose your hair and should be able to return to work on a modified schedule.

Folfox- Oxaliplatin and IV 5/FU every other week. 12 cycles total 6 months
Xelox or CapeOx- Oxaliplatin and pill form of 5/FU every 3 weeks for a total of 8 cycles over 6 months.


Yes I had to read over our emails. I've been in a fog since this threw me for a loop. Going to meet an onc tomorrow at 10am. Hoping for no more surprises. I hate them so much!
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Oct 05, 2017 5:39 pm

Aqx99 wrote:
teacher2017 wrote:
DonutHead wrote:Sorry, everyone...I am new to this so will surely make mistakes. Earlier I wrote the oncologist suggested FOLFOX for intravenous infusion. I was wrong. It’s actually an infusion of Oxaliplatin alone over the course of 12 cycles (6 months) and not the other two drugs that make up FOLFOX. The XELODA regimine remains the same. Sorry for the error and any confusion I amy have caused.

DH


Why Xeloda ? What's the difference? I really think that would work for me. I meet tomorrow with the onc. Let's see what they suggest. Seems like FOLFOX is standard treatment for stage 3.


According to the NCCN guidelines booklet that I posted here before, either treatment can be used for stage 3. I think doctors take into account the lifestyle of the patient, as well as other factors when deciding which treatment to recommend. I am on CapeOx (capecitabine is the generic of Xeloda) because I am still working full-time through my treatment. It is much easier for me to get an infusion once every 3 weeks and take pills for 2 weeks, than have to get infusions every 2 weeks and be hooked up to a pump for 2 days after. My oncologist actually suggested switching me over to FOLFOX after I started getting hand-foot symptoms during my second cycle. Instead we lowered the dose of capecitabine to see if that would help. I have not had any issues since the dose was lowered.


Hoping I can follow suit. I will ask tomorrow at my appt. thank you for all your information.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

DonutHead
Posts: 68
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Fri Oct 06, 2017 9:32 am

As i mentioned, i will undoubtedly make mistakes as this is all new to me. here is an update to my treatment. i will undergo a PET scan on monday since the oncologist suggested it was necessary to establish a baseline. i am afraid now the PET scan may reveal more than the original CT scan and that my staging may be wrong. does anyone have any experience with this?

My chemo starts this coming wednesday and i am scared, but not terrified. I will try my veins and see how it goes since i am not afraid of needles and believe i can get through the infusion. so one cycle is Oxaliplatin infusion for 90 mins followed by two weeks of Xeloda taken orally 2x a day. Then a week off to allow my body to come back and repeat. 12 cycles over 6 months, which should be complete in April.

i would love to hear from anyone that has undergone or is going through this regimen on what to expect, look for, any recommendations...it all seems daunting, especially since my world has literally been turned upside down. never imagined this would happen to me. we are going out to stock up on supplies for this ordeal as all of our cothing and household effects are in transit to our next assignment where it will hopefully reamin until i get through this and move on with my life.

i go up and down. one minute i am confident and optimistic, planning and moving forward. the next, i am broken down, feel isolated, and depressed. my family is great! alas they do not fully understand what i am going through and for me to hear from others experiencing the same helps enormously. thank you all for sharing!

DH
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
03/2020: CT - NED (1.1 CEA)
11/2020: CT - NED (1.2 CEA)
Still Here!

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Oct 06, 2017 10:58 am

Ok here's the update from the oncologist- I liked her. She was pushing for a port and treatment very two weeks for six months. She wants it straight into my bloodstream and said pills may not be obsorbed enough since so many lymphs were involved. I think I may break down and get the port. She said that if I just did it every two weeks then I wouldn't need pills at all. So it's folfox. I don't have a choice. It needs to be done. She said without chemo there is a 30% chance of reoccurrence. With chemo it drops to 5% - 10%. I'm not playing games. I'm killing this shit. Period.

DH- my emotions are everywhere too. I am going to meet with a social worker soon. I need to get my head together. We will be chemo buddies. Text me anytime.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

Brearmstrong
Posts: 112
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: NEW-Need some positivity here.

Postby Brearmstrong » Fri Oct 06, 2017 12:43 pm

teacher2017

Please don't be afraid of the port. It is really very easy and while sounds horrifying, it's so doable! Believe me, you are way way stronger than you think you are. It's painless going in and just a little sore for a couple of days. When they access it, I put on numbing cream an hour before and I never have felt a THING!!! It's super easy... the thought of wearing a pump with this thing still hooked up to my chest sounded like a horror movie but again, I never felt a thing and besides not getting the plastic tube caught on a kitchen cabinet knob, it was fine. I say this because I read many people on here trying to suffer through arm injections because the port terrifies them and they invented them for a reason, because it's easier, safer and less painful in the long run. I wish you all the best!!! I just finished 12 rounds of folfox and never thought I'd see the end of them but I made it and so will you!
50 F diag 1/17
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Nov 17 PET p aortic nodes Stage IV
Folfori w/avastin
May 18 surgery on nodes xeloda 2yr
Aug 18-May 20 NED
July 20 hysterectomy
July 21 vats right lung
Clinical trial- failed liver Mets biopsy shows now poorly differentiated carcinoma.
HAI pump at MSK may 2022
Nov met to pancreas- causing pain
Radiation ablation to pancreas Dec 22
New lung Mets watch and wait

DonutHead
Posts: 68
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Fri Oct 06, 2017 2:13 pm

Fantastic news! You will do well, no doubt....you must! With your insight and that from others, I think I will get the port afterall. I see the benefits and want to avoid any pains or complications of IV applications. That's why i came on here, to learn from the experts....so thankyou! Let's do this!

DH
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
03/2020: CT - NED (1.1 CEA)
11/2020: CT - NED (1.2 CEA)
Still Here!

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

Re: NEW-Need some positivity here.

Postby susie0915 » Fri Oct 06, 2017 2:32 pm

I did the oxi and xeloda without a port. I know I mentioned it earlier, but I only had 6 rounds. I also had a pet scan after radiation/chemo but before surgery.
The CT scan had already showed no mets, but did pick up tumor in rectum. The pet scan showed no evidence of disease especially in distal rectal area, but like I said that was after radiation/chemo.

I was scheduled to get a port, but ended up in hospital with bowel blockage 4 weeks after surgery. After being in hospital for 3 1/2 weeks and having a second surgery to remove scar tissue, I just didn't want another procedure, so opted to try without port. There were a couple times it took a couple pokes to get the vein. So Idk in hindsight a port may have been easier. IDK how I would have done with 12 rounds. Make sure you are very hydrated and the nurses always warmed my arm before administering the IV. You can always get a port if it gets difficult. That was my feeling. You will be having blood draws every week as well. Good Luck. I'm sure both of you will do well. Be sure to talk to oncologist about any side effects you feel. Adjustments in dosage levels can be given as well as other remedies.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Fri Oct 06, 2017 2:34 pm

DonutHead wrote:Fantastic news! You will do well, no doubt....you must! With your insight and that from others, I think I will get the port afterall. I see the benefits and want to avoid any pains or complications of IV applications. That's why i came on here, to learn from the experts....so thankyou! Let's do this!

DH

I think with 12 rounds, it will probably be easier and better with a port. My veins were sore after I finished for a few weeks also. Good Luck on Wed
I'm sure you will do fine. Stay positive.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: NEW-Need some positivity here.

Postby dianetavegia » Fri Oct 06, 2017 2:41 pm

HI Teacher, YES............. you will have a resection. Make sure the surgeon removes 15 or more lymph nodes. A CT scan cannot show microscopic spread to the nodes. You'll have chemo, too. They'll install a little round disc in your shoulder area above your breast and chemo will go in there. That way you won't ruin veins and you'll only feel a cool rush when they flush it and sometimes a taste for just a split second.

You CAN do this. My Stage III dx was Jan. 2009. I had a spread to my liver, 1.5 cm, in Feb. 2012 and I've been cancer free since. No chemo after the liver resection.

As for your resection.......... my surgeon took 18 inches of colon. I ate lunch the next day. I spent 42 hours in the hospital and went shopping at Walmart the night I was discharged.

Hang in there! My math teacher husband has almost died 2 times since June with sepsis and 3 years ago he had a petit mal seizure while driving. Only one we know he's ever had. He almost killed both of us that day.

Remember, all you can do is all you can do and all you can do is enough. Don't push yourself. Just focus on getting well and CHECK YOUR VITAMIN D3 LEVEL! (Youtube has videos that will explain how Vit D3 helps).
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Fri Oct 06, 2017 3:53 pm

teacher2017 wrote:Ok here's the update from the oncologist- I liked her. She was pushing for a port and treatment very two weeks for six months. She wants it straight into my bloodstream and said pills may not be obsorbed enough since so many lymphs were involved. I think I may break down and get the port. She said that if I just did it every two weeks then I wouldn't need pills at all. So it's folfox. I don't have a choice. It needs to be done. She said without chemo there is a 30% chance of reoccurrence. With chemo it drops to 5% - 10%. I'm not playing games. I'm killing this shit. Period.

DH- my emotions are everywhere too. I am going to meet with a social worker soon. I need to get my head together. We will be chemo buddies. Text me anytime.



I like the way you are thinking! Get rid of the shit! Liking your onc is half of the battle... I am sure that she is giving you the right advice. Best of luck! You have this!
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Fri Oct 06, 2017 6:16 pm

teacher2017 wrote:Ok here's the update from the oncologist- I liked her. She was pushing for a port and treatment very two weeks for six months. She wants it straight into my bloodstream and said pills may not be obsorbed enough since so many lymphs were involved. I think I may break down and get the port. She said that if I just did it every two weeks then I wouldn't need pills at all. So it's folfox. I don't have a choice. It needs to be done. She said without chemo there is a 30% chance of reoccurrence. With chemo it drops to 5% - 10%. I'm not playing games. I'm killing this shit. Period.

DH- my emotions are everywhere too. I am going to meet with a social worker soon. I need to get my head together. We will be chemo buddies. Text me anytime.


I absolutely recommend getting the port. I'm only going to do a maximum of 6 cycles and got the port. It is so much easier knowing that they will get it the first time, every time. No fishing around to find the vein. You won't even feel the needle going in because they give you lidocaine cream to put on at home before you come it. Also, it is placed where your jugular vein enters the heart, so your heart acts as the pump that sends the chemo out to your body faster than having to return to the heart from your arm first. I got the port on a Friday and they used it the following Monday. I wasn't able to use the lidocaine cream on it because it was still bandaged, but it still hurt less than a regular needle stick in the arm. Ever since I have used the cream and I don't feel anything when they stick the needle in.

I'd be happy to describe my experience getting the port, if you want. Just let me know.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
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 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Oct 06, 2017 6:23 pm

Aqx99 wrote:
teacher2017 wrote:Ok here's the update from the oncologist- I liked her. She was pushing for a port and treatment very two weeks for six months. She wants it straight into my bloodstream and said pills may not be obsorbed enough since so many lymphs were involved. I think I may break down and get the port. She said that if I just did it every two weeks then I wouldn't need pills at all. So it's folfox. I don't have a choice. It needs to be done. She said without chemo there is a 30% chance of reoccurrence. With chemo it drops to 5% - 10%. I'm not playing games. I'm killing this shit. Period.

DH- my emotions are everywhere too. I am going to meet with a social worker soon. I need to get my head together. We will be chemo buddies. Text me anytime.


I absolutely recommend getting the port. I'm only going to do a maximum of 6 cycles and got the port. It is so much easier knowing that they will get it the first time, every time. No fishing around to find the vein. You won't even feel the needle going in because they give you lidocaine cream to put on at home before you come it. Also, it is placed where your jugular vein enters the heart, so your heart acts as the pump that sends the chemo out to your body faster than having to return to the heart from your arm first. I got the port on a Friday and they used it the following Monday. I wasn't able to use the lidocaine cream on it because it was still bandaged, but it still hurt less than a regular needle stick in the arm. Ever since I have used the cream and I don't feel anything when they stick the needle in.

I'd be happy to describe my experience getting the port, if you want. Just let me know.


Yes please tell us. With so many lymph nodes involved, the onc wants it to go into my bloodstream. She said that not absorbing
the chemo pills would not be a good thing.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21


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