NEW-Need some positivity here.

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

Re: NEW-Need some positivity here.

Postby Shana » Mon Oct 09, 2017 4:43 pm

Teacher,

I can only say that positive thoughts are healthier than negative ones. Having said that I totally get where you are coming from because I still have this friggin tumor intact in my decending colon. I also know that based on the first 6 months of 2017 I am lucky to be alive so I have no choice but to stay optimistic. I weathered some really bad infections, colitis and a blockage which nearly killed me. I realize that there are no guarantees but like Susie and many others have told you there are so many survivors whose CRC involvement included nodes and more.

I wish you strength, hope and faith for what lies ahead... YOU CAN DO THIS! Yes, you are stronger than you imagine and I honestly say this from my own experience. You have much to live for and you will make it through the ugly side of chemo to find the rainbow and the pot of NED gold.

Hugs to you from one of your fellow warriors!

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!

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

Re: NEW-Need some positivity here.

Postby DonutHead » Mon Oct 09, 2017 5:52 pm

Stop reading negative stuff...if you want it, the internet will not disappoint. You have to think about you as you are different than everyone else. If they did not find anything on your scans in terms of metastasis it’s likely there is nothing there. i am with you on getting the treatment right away, the sooner the better! I just had a PET scan to compliment the earlier CT scan (which did not show any metastasis) and am hoping for the same result. i am confident it will be fine.

Tomorrow morning i have my port placed, then it’s oxaliplatain round one on wednesday morning with my start of two weeks of Xeloda twice a day orally.

Teacher...it’s out of our hands at this point, what is done is done. this is our fight now to get better! and - you will. there are things we cannot control in this fight, but you can try and stop worrying about the things past and look forward to the future and getting better. life is never over until it’s over and we all have more living to do. i guess try not to get stuck, it’s the most difficult thing to do, but you must try and move forward...

we did not know this was in us and now we do...now we know what we have to do to rid ourselves of this disease and WE WILL!

I just returned from a 4 mile run...it was damn humid and i know it will not always be like that through my treatment, but i am going to try and have as many days like today with that run as i can...keeps me going, clears my head, and reminds me that i am not a quitter, not on myself or my family...

I could get hit by a bus tomorrow...

We are all here for you Teacher and for each other...give yourself the benefit out any doubt and make your own odds, you are NOT a statistic!

DH
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: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 10, 2017 5:14 am

Shana wrote:Teacher,

I can only say that positive thoughts are healthier than negative ones. Having said that I totally get where you are coming from because I still have this friggin tumor intact in my decending colon. I also know that based on the first 6 months of 2017 I am lucky to be alive so I have no choice but to stay optimistic. I weathered some really bad infections, colitis and a blockage which nearly killed me. I realize that there are no guarantees but like Susie and many others have told you there are so many survivors whose CRC involvement included nodes and more.

I wish you strength, hope and faith for what lies ahead... YOU CAN DO THIS! Yes, you are stronger than you imagine and I honestly say this from my own experience. You have much to live for and you will make it through the ugly side of chemo to find the rainbow and the pot of NED gold.

Hugs to you from one of your fellow warriors!

Shana


Thank you! I really need a good kick in the ass from time to time. I have to stay off the fb groups. They are so frightening.
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: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 10, 2017 5:43 am

DonutHead wrote:Stop reading negative stuff...if you want it, the internet will not disappoint. You have to think about you as you are different than everyone else. If they did not find anything on your scans in terms of metastasis it’s likely there is nothing there. i am with you on getting the treatment right away, the sooner the better! I just had a PET scan to compliment the earlier CT scan (which did not show any metastasis) and am hoping for the same result. i am confident it will be fine.

Tomorrow morning i have my port placed, then it’s oxaliplatain round one on wednesday morning with my start of two weeks of Xeloda twice a day orally.

Teacher...it’s out of our hands at this point, what is done is done. this is our fight now to get better! and - you will. there are things we cannot control in this fight, but you can try and stop worrying about the things past and look forward to the future and getting better. life is never over until it’s over and we all have more living to do. i guess try not to get stuck, it’s the most difficult thing to do, but you must try and move forward...

we did not know this was in us and now we do...now we know what we have to do to rid ourselves of this disease and WE WILL!

I just returned from a 4 mile run...it was damn humid and i know it will not always be like that through my treatment, but i am going to try and have as many days like today with that run as i can...keeps me going, clears my head, and reminds me that i am not a quitter, not on myself or my family...

I could get hit by a bus tomorrow...

We are all here for you Teacher and for each other...give yourself the benefit out any doubt and make your own odds, you are NOT a statistic!

DH


Thank you DH. Love your rationale and pep talks. We got this. We just need to start!
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: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 10, 2017 5:51 am

susie0915 wrote:You definitely will feel more in control when you start treatment. I understand you anger. I still worry. I have a 6 month scan next Monday so anxiety is
setting in. There are so many on this forum with lymph node involvement that are doing very well. I cannot tell you not to worry. Please try to have positive thoughts as difficult as it can be. On a side note, how is your bronchitis? Hope you are feeling better.


Good luck for a clear scan! As for my bronchitis, I'm on antibiotics and don't really cough during the day but at night I'm a coughing mess! I'm hoping these antibiotics work!
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

User avatar
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 » Tue Oct 10, 2017 7:58 am

teacher2017 wrote:
susie0915 wrote:You definitely will feel more in control when you start treatment. I understand you anger. I still worry. I have a 6 month scan next Monday so anxiety is
setting in. There are so many on this forum with lymph node involvement that are doing very well. I cannot tell you not to worry. Please try to have positive thoughts as difficult as it can be. On a side note, how is your bronchitis? Hope you are feeling better.


Good luck for a clear scan! As for my bronchitis, I'm on antibiotics and don't really cough during the day but at night I'm a coughing mess! I'm hoping these antibiotics work!

Thanks. I am feeling positive but there's always that little bit of worry, because you never know. I hope your antibiotics work as well. When are you starting chemo?
Did you talk to your oncologist about the bronchitis and if it should be postponed until you finish antibiotics? Also, how is your surgery recovery going? I hope you are doing well with that as well.
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

teacher2017
Posts: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 10, 2017 8:07 am

susie0915 wrote:
teacher2017 wrote:
susie0915 wrote:You definitely will feel more in control when you start treatment. I understand you anger. I still worry. I have a 6 month scan next Monday so anxiety is
setting in. There are so many on this forum with lymph node involvement that are doing very well. I cannot tell you not to worry. Please try to have positive thoughts as difficult as it can be. On a side note, how is your bronchitis? Hope you are feeling better.


Good luck for a clear scan! As for my bronchitis, I'm on antibiotics and don't really cough during the day but at night I'm a coughing mess! I'm hoping these antibiotics work!

Thanks. I am feeling positive but there's always that little bit of worry, because you never know. I hope your antibiotics work as well. When are you starting chemo?
Did you talk to your oncologist about the bronchitis and if it should be postponed until you finish antibiotics? Also, how is your surgery recovery going? I hope you are doing well with that as well.


Hi-
I'm planning to go back to work on Monday full time. Chemo won't start until the end of the month. The healing from the surgery was uneventful. Healing great, reg bowel movements, zero issues. She doesn't want me to start until this bronchitis is over. I want to get started. The sooner I start, the sooner I finish. I think my immune system is just run down due to the stress I just had. Being home is terrible. My mind goes crazy. I worry about more surprises. Everyone says "you'll be fine" but we all know there are no guarantees. I am trying to psych myself out that this needs to be done to be ok. But it's all so hard. I really appreciate life more after this.
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

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

Re: NEW-Need some positivity here.

Postby DonutHead » Tue Oct 10, 2017 1:02 pm

Received the port this morning. Right side and they have me set up for ready access tomorrow for round 1. I have my Xeloda and oral Ativan and Zofran as well. The port install was uneventful. It was much like the prep for my colonoscopy with the IV and review of what was to be done. Then it was a short walk to the OR and prep on the table, then i was out.

I woke up just like after the colonoscopy and could somewhat feel the catheter in my neck. looking at it you really cannot tell it's there. With the leads attached you can see it if you really look, but i am satisfied with it not getting in the way of anything. although i miss hugging my wife and my boys after being radioactive yesterday and now this!

The doctor told me not to do any lifting over 10 pounds and not exercising for at least 7-10 days. However, once the glue and tape come off i am good to go, weight lifting, running, no real limits other than my own...

Right now it kind of hurts, the anesthesia is wearing off. I have a high threshold for pain so it's kind of like what the incisions felt like from the lap surgery immediately following surgery, but without the need for pain medications. it's a bit like having whiplash on the the righ lower side of my neck and feels like i got hit in the chest hard below the collarbone

i had a broken collarbone from football when i was younger so feels a little like that. it's amazing how those muscles keep your neck stable and help you to turn your head, you never think of it. i have a somewhat bad headache as well, but that is likely from all the stress and tugging, pulling on the skin and muscles from the port install. Took 30 mins.

it's not unbearable, just dull and nagging pain, which should subside in 2-4 days.

Now just waiting on the PET scan results from yesterday with fingers crossed. Whatever the news, will keep pushing forward and get through this.

DH
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

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

Re: NEW-Need some positivity here.

Postby Shana » Tue Oct 10, 2017 1:45 pm

[quote="teacher2017"]

Thank you! I really need a good kick in the ass from time to time. I have to stay off the fb groups. They are so frightening.

This forum is much more supportive and encouraging than other groups I have visited. Yes there are sad stories of loss but there are so many positive ones and I see more and more of those these days. Let's take heart in those success stories and stay positive!
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: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 10, 2017 2:07 pm

DonutHead wrote:Received the port this morning. Right side and they have me set up for ready access tomorrow for round 1. I have my Xeloda and oral Ativan and Zofran as well. The port install was uneventful. It was much like the prep for my colonoscopy with the IV and review of what was to be done. Then it was a short walk to the OR and prep on the table, then i was out.

I woke up just like after the colonoscopy and could somewhat feel the catheter in my neck. looking at it you really cannot tell it's there. With the leads attached you can see it if you really look, but i am satisfied with it not getting in the way of anything. although i miss hugging my wife and my boys after being radioactive yesterday and now this!

The doctor told me not to do any lifting over 10 pounds and not exercising for at least 7-10 days. However, once the glue and tape come off i am good to go, weight lifting, running, no real limits other than my own...

Right now it kind of hurts, the anesthesia is wearing off. I have a high threshold for pain so it's kind of like what the incisions felt like from the lap surgery immediately following surgery, but without the need for pain medications. it's a bit like having whiplash on the the righ lower side of my neck and feels like i got hit in the chest hard below the collarbone

i had a broken collarbone from football when i was younger so feels a little like that. it's amazing how those muscles keep your neck stable and help you to turn your head, you never think of it. i have a somewhat bad headache as well, but that is likely from all the stress and tugging, pulling on the skin and muscles from the port install. Took 30 mins.

it's not unbearable, just dull and nagging pain, which should subside in 2-4 days.

Now just waiting on the PET scan results from yesterday with fingers crossed. Whatever the news, will keep pushing forward and get through this.

DH


Sounds like you got your armour to do battle. Kick its ass, my friend. Take no prisoners.
I will be you in a week or two.
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

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

Re: NEW-Need some positivity here.

Postby DonutHead » Tue Oct 10, 2017 3:03 pm

The results of my PET scan are in....I am clean! NO metabolic activity, no metastesis, no hot spots, no active anything! Not sure what that means exactly with chemo to start tomorrow, was too busy jumping up and down! Regardless, I have the port and I still want some chemo just to be sure...though I am not sure it will be necessary to go all 12 rounds??? Oh my gosh, i cannot stop pacing now...keep fighting everyone!

DH
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

User avatar
Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Tue Oct 10, 2017 3:05 pm

I am sooooooooo happy for you!!
"*doin' da Snoopy Dance for ya**

Chemo is to hopefully get any that might still be lurking.

Excellent news!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

teacher2017
Posts: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 10, 2017 3:35 pm

DonutHead wrote:The results of my PET scan are in....I am clean! NO metabolic activity, no metastesis, no hot spots, no active anything! Not sure what that means exactly with chemo to start tomorrow, was too busy jumping up and down! Regardless, I have the port and I still want some chemo just to be sure...though I am not sure it will be necessary to go all 12 rounds??? Oh my gosh, i cannot stop pacing now...keep fighting everyone!

DH


Alright! Sounds like the day just got better! Woohoo!!! That's huge! You made my day too!
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

User avatar
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 » Tue Oct 10, 2017 3:49 pm

teacher2017 wrote:
DonutHead wrote:The results of my PET scan are in....I am clean! NO metabolic activity, no metastesis, no hot spots, no active anything! Not sure what that means exactly with chemo to start tomorrow, was too busy jumping up and down! Regardless, I have the port and I still want some chemo just to be sure...though I am not sure it will be necessary to go all 12 rounds??? Oh my gosh, i cannot stop pacing now...keep fighting everyone!

DH


Alright! Sounds like the day just got better! Woohoo!!! That's huge! You made my day too!

Great news.
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

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

Re: NEW-Need some positivity here.

Postby Shana » Wed Oct 11, 2017 1:44 am

teacher2017 wrote:
DonutHead wrote:The results of my PET scan are in....I am clean! NO metabolic activity, no metastesis, no hot spots, no active anything! Not sure what that means exactly with chemo to start tomorrow, was too busy jumping up and down! Regardless, I have the port and I still want some chemo just to be sure...though I am not sure it will be necessary to go all 12 rounds??? Oh my gosh, i cannot stop pacing now...keep fighting everyone!

DH


Alright! Sounds like the day just got better! Woohoo!!! That's huge! You made my day too!



Great awesome news DH! Happy Dance Time!
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!


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