NEW-Need some positivity here.

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

Re: NEW-Need some positivity here.

Postby DonutHead » Sun Feb 18, 2018 10:54 am

I had to stop the Oxaliplatin after the 3rd round. My doctor suggested 3 out of 8 was better than none (obviously), but that the addition of Ox is only recent to the protocol and improved outcomes by 3-4% overall. so in my case, he was concerned more over the long term side effects of continuing Ox rather than stopping it altogether.

In the Scot trials, it was shown than recieving half of the protocol or in my case 4 out of the standard 8 cycles had little to no effect on the outcomes or the numbers in the study were realtively the same.

i am on round 7 now of just the xeloda at 4000mg per day. one more to go! I think the chemo has killed me to the core as the side effects are more prominent and lasting. i have some hair thinning/loss, peeling skin above my finger nails, red hot sunburn feeling feet, cracks in the skin around my toes, the palms of my hands look red and waxy, finger tips - especially the pads of my thumbs are numb, my digestive tract is out of whack, nightmares and insomnia...that’s about it. all manageable given the alternative.
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
- CT - No Mets - Very 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 of 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

teacher2017
Posts: 188
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Mon Feb 19, 2018 9:22 am

Atoq wrote:You are really close to the end of the mop up chemo! I hope the next rounds are not so hard and you will be NED for ever!

If the oncologist says 6 is like 12, are you not tempted to stop now that you are over 6?

All the best

Claudia



Since there were 12/17 LNs involved- the oxi was lowered but not completely eliminated. It will eventually be eliminated because she said it was rare to go all 12. Anyway the closer to spring I come, the closer to the end I am. I just really want clear scans and this port out. My best advice to anyone going through this is to make plans. Plans to vacation, dinner, whatever. Plans help. A great distraction. One more step to new normal.
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 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

teacher2017
Posts: 188
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Apr 25, 2018 4:24 pm

Just wanted to post an update. I AM FINISHED WITH CHEMO! I could scream it all over the place. I know this can come back and this may be the first of many but I feel free. I am tired and beaten up but I am still here. Breathing. I’m determined to enjoy this for even a bit of time. Colonoscopy on May 30 and then a scan in July. Then port removal if all goes well. Thank you all for helping get through this part. Your support was so important.
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 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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susie0915
Posts: 840
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Wed Apr 25, 2018 4:48 pm

So glad you are done. Everyday you will feel better. It takes time.
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

Beckster
Posts: 269
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Wed Apr 25, 2018 4:48 pm

teacher2017 wrote:Just wanted to post an update. I AM FINISHED WITH CHEMO! I could scream it all over the place. I know this can come back and this may be the first of many but I feel free. I am tired and beaten up but I am still here. Breathing. I’m determined to enjoy this for even a bit of time. Colonoscopy on May 30 and then a scan in July. Then port removal if all goes well. Thank you all for helping get through this part. Your support was so important.


Yay!!!! Its time to party!!!! :lol: :lol: :lol:
57/Female
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 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 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
Clear Colonoscopy 10/17 :D

margiej
Posts: 38
Joined: Sat Apr 14, 2018 8:46 am

Re: NEW-Need some positivity here.

Postby margiej » Wed Apr 25, 2018 6:20 pm

Beckster wrote:
teacher2017 wrote:Just wanted to post an update. I AM FINISHED WITH CHEMO! I could scream it all over the place. I know this can come back and this may be the first of many but I feel free. I am tired and beaten up but I am still here. Breathing. I’m determined to enjoy this for even a bit of time. Colonoscopy on May 30 and then a scan in July. Then port removal if all goes well. Thank you all for helping get through this part. Your support was so important.


We all share your joy! You can focus on enjoying spring.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
NED

jep
Posts: 70
Joined: Sun Jun 11, 2017 7:45 pm

Re: NEW-Need some positivity here.

Postby jep » Wed Apr 25, 2018 7:47 pm

Congrats teacher2017! I've been wondering how you've been. Great work finishing up those 12 rounds! Good luck with that follow up scope....my husband goes for his in May as well....summer's almost here!!
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: NEW-Need some positivity here.

Postby Caat55 » Wed Apr 25, 2018 10:01 pm

So happy for you. Can't wait to be on your side of treatment. :D
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

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Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Thu Apr 26, 2018 11:53 am

Awesome news! So happy that everything is going well and you can enjoy your summer!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

crikklekay
Posts: 49
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: NEW-Need some positivity here.

Postby crikklekay » Fri Apr 27, 2018 9:34 am

Congratulations! I'll admit, when I started reading this thread I didn't realize how old it was until I got to the bottom and saw it had 27 pages! Reading your entry reminded me a lot of when my husband was diagnosed, except he did get his surgery done withint 48 hours because the tumor had blocked his colon completely and he was very ill. Hearing that cancer dianosis made me feel like our life as we knew it was over, that I had to face a reality without my best friend in the near future. Reading entries like yours and others that have gone through this gauntlet before us and have come out the other side have helped immensely. So I wish you the best of luck and a long future ahead of you as NED!
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

teacher2017
Posts: 188
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu May 17, 2018 6:56 pm

I have to say that not a day goes by that I don’t worry about the future. But I feel like I just beat a giant. Could I be crazy and actually have it returning? Sure but today I feel normal and did normal mom-like things. I have a colonoscopy in May and a scan in July. I don’t know where my pathology report is and I don’t want to find it. I feel fine with neuropathy in fingers and toes but I’m alive. I’ll take it. I pray for all of you and hope that we will come back 30 years from now and chat. If others can survive, why can’t we? I’m convinced that I’ll die from stress and not cc. Or I’ll have survived all this and get killed by a bus. I now know why we don’t see a lot of survivors on these boards, we all just want to move on. Keep us posted of all your successes. We need them.
Last edited by teacher2017 on Fri May 18, 2018 7:50 pm, edited 1 time in total.
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 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Thu May 17, 2018 8:02 pm

Amen to all of that!

Glad to know that you are doing so well and continue to stay NED!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

teacher2017
Posts: 188
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed May 30, 2018 9:21 pm

Feeling relieved! Colonoscopy was clear. Thanks to my tumor they couldn’t see the rest of my colon during the first one. All clear! GI dr said the surgeon did a nice neat resection and he said I didn’t need another colonoscopy for 3-5 years. How can it be? I refuse to wait that long. Too nervous! Blood work with cea level in Friday then a scan to be scheduled. I’d be in a much better place if it weren’t for those damn LNs involved! Thought I’d share my good news! Hoping this feeling stays awhile. It’s been a terrible ride and I want to get 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 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

SteveNZ
Posts: 140
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: NEW-Need some positivity here.

Postby SteveNZ » Wed May 30, 2018 9:49 pm

Hi,
So glad you are coming out the other side of it all.
Really do have a wonderful time ahead..........
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

Soccermom2boys
Posts: 189
Joined: Tue Nov 10, 2015 10:29 pm

Re: NEW-Need some positivity here.

Postby Soccermom2boys » Wed May 30, 2018 9:56 pm

teacher2017 wrote: It’s been a terrible ride and I want to get off.


Isn’t that the truth?! :lol: Definitely enjoy the good news, it was hard earned! I feel your concern with the lymph nodes, but many on here have had LN involvement and are NED many years out, so why can’t we be as well, right?!

From one teacher to another—good luck finishing up your school year and thoroughly enjoy your summer break, I know I will be!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox


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