NEW-Need some positivity here.

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teacher2017
Posts: 121
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Nov 03, 2017 6:18 pm

Hi all-
Just had my port put in and it was rather uneventful. Yes it's sore and black and blue but it wasn't nearly the drama I made it out to be in my head. The nurses and the dr were very nice and funny too. Totally changed my mood. The music in the OR was very helpful too. I think the dr actually sang. It was amusing to say the least.
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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susie0915
Posts: 441
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 03, 2017 7:16 pm

Good. Any positive experience helps in dealing with all you are going through. One step closer to being done with treatment. Have a good night.
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: 180
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Fri Nov 03, 2017 8:08 pm

The unknown is ALWAYS the scariest. Once you get past that, you got it made! :)

Next hurdle is the first chemo session. You got this!!!!
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

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Shana
Posts: 135
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Fri Nov 03, 2017 11:41 pm

Hi teacher,

I'm glad to hear the port placement went smoothly, they played music during my procedure too and I think one of the male nurses sang. It was actually very nice and made it seem very routine like a visit to the dentist (with better drugs!) I had no pain during procedure and like you said it was pretty easy.

I was supposed to see a oncology counselor a few weeks ago but had to cancel due to the fires. I have found myself less focused on my cancer worries and more focused on the members of my community who were affected by the fire. I had felt somewhat without direction so I was drawn to volunteering and comforting others. I still think about the battle being fought inside my body, I'm sure I always will no matter what my status is but it's been a welcome break to focus on something else besides cancer.

I want to learn more about meditation and relaxation techniques to keep my stress level low. I hope we all learn what works best in coping with this disease. attitude and spirit matter. You're going to do great teacher, you have come so far since you first came to the forum, you're much stronger and in control. Like Robin said, you've got this, Susie is the spirit of positivity and Anne is right about counseling and availing yourself of any support out there.

Have a wonderful weekend everyone!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

teacher2017
Posts: 121
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Nov 04, 2017 6:24 am

Thank you all for all your words of wisdom and honesty. The port is a bit painful this morning- in fact it could be just as annoying as the resection. I took two extra strength tylenol and it took away the constant ache. The needle in the vein isn't what hurts- it's the port button itself. I feel like a cyborg. Something out of Dr. Who. I told the surgeon that I don't want to see him until he removes it. And he said he would gladly do it and he will do a dance for me in the OR afterwards. Why can't all surgeons be human like this?! Have a good weekend, folks.
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: 248
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sat Nov 04, 2017 7:52 am

teacher2017 wrote:Thank you all for all your words of wisdom and honesty. The port is a bit painful this morning- in fact it could be just as annoying as the resection. I took two extra strength tylenol and it took away the constant ache. The needle in the vein isn't what hurts- it's the port button itself. I feel like a cyborg. Something out of Dr. Who. I told the surgeon that I don't want to see him until he removes it. And he said he would gladly do it and he will do a dance for me in the OR afterwards. Why can't all surgeons be human like this?! Have a good weekend, folks.


My port hurt for about a week, getting better each day. Then for a few more weeks it felt heavy inside my chest. As the tissue healed around it, I eventually got to the point that I almost forget it is there. Don't forget to use your lidocaine cream on infusion days!
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

Robino1
Posts: 180
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Sat Nov 04, 2017 8:15 am

It takes a while to get used to it. There will be some pain for about a week. It is still an incision from a surgical procedure.

I was so afraid of it hurting for a month after. Only giving sideways hugs, patting it clean in the shower, gently patting it dry, gently putting lotion on. Now it's no big deal. I actually am friends with it now. It's saving my life and it is my badge of courage.

Lidocaine is a LIFESAVER.
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

teacher2017
Posts: 121
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Nov 04, 2017 8:47 am

Aqx99 wrote:
teacher2017 wrote:Thank you all for all your words of wisdom and honesty. The port is a bit painful this morning- in fact it could be just as annoying as the resection. I took two extra strength tylenol and it took away the constant ache. The needle in the vein isn't what hurts- it's the port button itself. I feel like a cyborg. Something out of Dr. Who. I told the surgeon that I don't want to see him until he removes it. And he said he would gladly do it and he will do a dance for me in the OR afterwards. Why can't all surgeons be human like this?! Have a good weekend, folks.


My port hurt for about a week, getting better each day. Then for a few more weeks it felt heavy inside my chest. As the tissue healed around it, I eventually got to the point that I almost forget it is there. Don't forget to use your lidocaine cream on infusion days!


Can I use the lidocaine this soon? Even 5 days after the surgery?
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!

Robino1
Posts: 180
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Sat Nov 04, 2017 9:04 am

If you don't have a dressing on it, go for it. I wish I could have that first time. They did my first chemo just 3 days after placement and I still had the dressing so I couldn't even use the lidocaine if I had even had it at that time.

The first time is a bitch since it is still sore after surgery.

Remember to put it on an hour before the scheduled chemo. Use a small square of plastic wrap to cover.
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

teacher2017
Posts: 121
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Nov 04, 2017 9:16 am

Robino1 wrote:If you don't have a dressing on it, go for it. I wish I could have that first time. They did my first chemo just 3 days after placement and I still had the dressing so I couldn't even use the lidocaine if I had even had it at that time.

The first time is a bitch since it is still sore after surgery.

Remember to put it on an hour before the scheduled chemo. Use a small square of plastic wrap to cover.


Does surgical tape count as dressing? Damn. How the hell is it gonna heal if it's being poked every 2 weeks?????
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!

Robino1
Posts: 180
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Sat Nov 04, 2017 10:02 am

Mine had a plastic sheet type thing over it. A tape is easy to remove. It actually heals quite quickly. Mine still looks bruised but I think it is the color of the port that I'm seeing. I've had mine since June.
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
Shana
Posts: 135
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Sat Nov 04, 2017 3:17 pm

Robino1 wrote:It takes a while to get used to it. There will be some pain for about a week. It is still an incision from a surgical procedure.

I was so afraid of it hurting for a month after. Only giving sideways hugs, patting it clean in the shower, gently patting it dry, gently putting lotion on. Now it's no big deal. I actually am friends with it now. It's saving my life and it is my badge of courage.

Lidocaine is a LIFESAVER.


I was very careful with mine too but now I barely give "Violet" a thought except on infusion days. I don't use anything to numb her anymore because I ended up getting an itchy rash which was more annoying than the needle stick but it was nice to have it numbed.
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

Aqx99
Posts: 248
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sat Nov 04, 2017 7:04 pm

teacher2017 wrote:
Aqx99 wrote:
teacher2017 wrote:Thank you all for all your words of wisdom and honesty. The port is a bit painful this morning- in fact it could be just as annoying as the resection. I took two extra strength tylenol and it took away the constant ache. The needle in the vein isn't what hurts- it's the port button itself. I feel like a cyborg. Something out of Dr. Who. I told the surgeon that I don't want to see him until he removes it. And he said he would gladly do it and he will do a dance for me in the OR afterwards. Why can't all surgeons be human like this?! Have a good weekend, folks.


My port hurt for about a week, getting better each day. Then for a few more weeks it felt heavy inside my chest. As the tissue healed around it, I eventually got to the point that I almost forget it is there. Don't forget to use your lidocaine cream on infusion days!


Can I use the lidocaine this soon? Even 5 days after the surgery?


As long as you don't have a bandage on it, sure. It was recommended to me to use Press N Seal to cover the cream. It sticks to the skin really well. I got my port on a Friday and my first infusion the following Monday, so I was unable to use the lidocaine the first time. It didn't hurt that bad, less than being stuck in the arm for a blood draw. I also had heat rash under the bandage, which did not help.
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

teacher2017
Posts: 121
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Nov 08, 2017 8:04 pm

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
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!

Robino1
Posts: 180
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Wed Nov 08, 2017 8:20 pm

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.
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


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