NEW-Need some positivity here.

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LeonW
Posts: 343
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: NEW-Need some positivity here.

Postby LeonW » Sun Sep 17, 2017 8:27 pm

teacher2017 wrote:So depressed tonight. The waiting for surgery is horrific. I need to stop feeling so hopeless. Your stories help. But I still read all the terrible endings. I feel just lost...

    Hi Teacher, sorry to see you in distress. We've all been there. The uncertainty of the first weeks are especially difficult and on top of that you're thrown into a situation that you're unfamiliar with, need to rely on docs that you've never seen before and have to deal with a frightful totally new jargon. And all of this while a cancer has been growing inside secretly.

    I found this loss of control horrific, but it was comforting to see how much effort was being mobilized to help. My Dx came just before Xmas / had to wait until early Jan before things started to move. That Xmas and the change-of-year festivities probably were the most difficult. I clearly remember the many hours spent on Google then, and how confronting the terrible statistics were that one finds there. The best advice then was to stay off google and to find a doctor I would trust and to rely on his/her advice; don't think that in a few hours with Mr. Google, one can develop an insight that even the least resembles that of your docs who spent a dozen years at university and with colleagues, and can draw from experience. They have seen it all and know you and your details.

    Like you, I had a mass in the upper left side-transverse. Mine was in the bend near the spleen. That was 5 yrs ago. Today I'm happy they found it and were able to take it all out. As you can see from my signature, it were not easy times. But once treatment got going, things started to find their place. I had the luck to find an onc who was totally open in explaining it all and who had no problems in fully answering all my questions. She also guided the half year of chemo after the colon job. Found a similar (brilliant) onc liver surgeon, when transferred to a different hospital for the liver resection.

    I wish that you find similar support. And that you find peace to leave treatment details to your docs such that you can focus on the things that *you* can control. That you find pleasure again in all the little and big things that are worth celebrating. And that you *do* celebrate each and every victory or milestone.

    Oh, and remember that you need strength these days. Do ask your PCP for a Rx when you need something to sleep.

    Best wishes, and let us know how things proceed.

    Leon
    Dec 2012 - Colon Cancer MM 65yrs, 2 unresect liver mets, CEA 41.8
    Jan 2013 - colectomy @ spleen 2/26 nodes (IVa T3N1bM1a) MSI-low
    Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
    Sept - 2x failed Portal Vein embolization
    Oct 2013 - R liver resect 28 hosp days (liver failure, delirium, emboli, encephalopathy) pCR- cancer gone
    2014/15 - recovery/benign polyp
    Apr 2016 - new town, new life
    clean CTs and (1.3-1.4) CEAs: 4x2014, 7x2015-2018; 2 benign polyps June 2018
    June 12, 2018: 5-yr survivor

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    susie0915
    Posts: 773
    Joined: Wed Aug 02, 2017 8:17 am
    Facebook Username: Susan DeGrazia Hostetter
    Location: Michigan

    Re: NEW-Need some positivity here.

    Postby susie0915 » Sun Sep 17, 2017 8:30 pm

    Wow. I wish I would've had an oncology counselor. That would've been so helpful. Please call tomorrow and see if your cancer center has one. I still can have down days thinking about that year of treatments and all I went through. It has been helpful here even tho I joined well after treatments. I wish I would've joined much earlier.
    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: 145
    Joined: Sat Sep 09, 2017 1:18 pm
    Facebook Username: Lydia Clark

    Re: NEW-Need some positivity here.

    Postby teacher2017 » Mon Sep 18, 2017 7:03 pm

    Ok I fixed my signature not that I know what any of it means. Thank you all for your help.
    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

    JJH
    Posts: 167
    Joined: Mon Apr 24, 2017 7:26 am
    Location: Europe

    Re: NEW-Need some positivity here.

    Postby JJH » Mon Sep 18, 2017 7:51 pm

    Good luck on your resection this Friday. Be sure to let us know how it goes and what your post-surgery pathology report says.

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    Shana
    Posts: 371
    Joined: Sun Jul 30, 2017 9:45 pm
    Location: Sonoma, CA

    Re: NEW-Need some positivity here.

    Postby Shana » Tue Sep 19, 2017 6:21 pm

    teacher2017 wrote:Ok I fixed my signature not that I know what any of it means. Thank you all for your help.



    Think positive and stay strong, you're going to get that tumor out and beat this! You've been given so much excellent advice already that I can't add anything more other than stay off Google!

    Looking forward to hearing good news from you after your successful surgery.

    Best of luck,

    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!

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    Shana
    Posts: 371
    Joined: Sun Jul 30, 2017 9:45 pm
    Location: Sonoma, CA

    Re: NEW-Need some positivity here.

    Postby Shana » Tue Sep 19, 2017 6:31 pm

    LeonW wrote:
    Like you, I had a mass in the upper left side-transverse. Mine was in the bend near the spleen. That was 5 yrs ago. Today I'm happy they found it and were able to take it all out. As you can see from my signature, it were not easy times. But once treatment got going, things started to find their place. I had the luck to find an onc who was totally open in explaining it all and who had no problems in fully answering all my questions. She also guided the half year of chemo after the colon job. Found a similar (brilliant) onc liver surgeon, when transferred to a different hospital for the liver resection.

    Best wishes, and let us know how things proceed.

    Leon


    Hi Leon,

    My tumor is also at the splenic juncture and near the pancreas. My oncologist said that removal at this time was not recommended because of multiple liver mets. She said the removal and resection was a complex surgery and that I would still have cancer in my liver. She said we needed to tackle the liver tumors first and if I had one or two left that were smaller and in same lobe they could remove them. The tumor in the colon would be addressed after that. It sounds like you had your colon tumor removed first if I read that right.

    By the way your recovery after what sounded like a horrific ordeal is remarkable!

    Stay well and NED forever!

    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: 145
    Joined: Sat Sep 09, 2017 1:18 pm
    Facebook Username: Lydia Clark

    Re: NEW-Need some positivity here.

    Postby teacher2017 » Thu Sep 21, 2017 6:48 am

    Big mistake telling some people at work. I left and everyone was hugging me like I was going to die. I know they are really wishing me well but it was too much. I had to leave. Last night I barely slept. Horrible morbid thoughts. Today is prep day. I need this resection to be over. My nerves can't take it. How did you deal with the anxiety?
    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

    Aqx99
    Posts: 397
    Joined: Fri Mar 31, 2017 7:28 am
    Facebook Username: aqx99
    Location: Pfafftown, NC

    Re: NEW-Need some positivity here.

    Postby Aqx99 » Thu Sep 21, 2017 7:41 am

    teacher2017 wrote:Big mistake telling some people at work. I left and everyone was hugging me like I was going to die. I know they are really wishing me well but it was too much. I had to leave. Last night I barely slept. Horrible morbid thoughts. Today is prep day. I need this resection to be over. My nerves can't take it. How did you deal with the anxiety?


    Did you check to see if there is an oncology counselor at your cancer center? Mine has helped me immensely.
    Anne, 40
    Stage IIIB Rectal Cancer
    T3N1bM0
    2/21/17 Diagnosis, Age 39
    2/21/17 CEA 0.9 ng/mL
    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 Diagnosed w/ovarian cancer
    9/6/17 CA 125 11.1 U/mL
    11/27/17 CEA 2.6 ng/mL
    12/5/17 CT showed NED
    12/13/17 CEA 2.9 ng/mL
    1/11/18 CA 125 8.6 U/mL
    1/23/18 Reversal
    3/21/18 CT showed enlarged thymus
    4/6/18 PET confirmed NED

    User avatar
    LeonW
    Posts: 343
    Joined: Sun May 03, 2015 4:59 pm
    Location: Amsterdam, Netherlands

    Re: NEW-Need some positivity here.

    Postby LeonW » Thu Sep 21, 2017 8:20 am

    'teacher2017 signature' (Sept 19) wrote:Peritoneum & retro unremarkable
    Ctscan says no spread but who knows!
    Resection this Friday - Sept 22

    Best wishes for tomorrow.
    Greetings L.
    Dec 2012 - Colon Cancer MM 65yrs, 2 unresect liver mets, CEA 41.8
    Jan 2013 - colectomy @ spleen 2/26 nodes (IVa T3N1bM1a) MSI-low
    Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
    Sept - 2x failed Portal Vein embolization
    Oct 2013 - R liver resect 28 hosp days (liver failure, delirium, emboli, encephalopathy) pCR- cancer gone
    2014/15 - recovery/benign polyp
    Apr 2016 - new town, new life
    clean CTs and (1.3-1.4) CEAs: 4x2014, 7x2015-2018; 2 benign polyps June 2018
    June 12, 2018: 5-yr survivor

    Beckster
    Posts: 250
    Joined: Thu Jan 12, 2017 3:01 pm
    Location: New Jersey

    Re: NEW-Need some positivity here.

    Postby Beckster » Thu Sep 21, 2017 9:41 am

    teacher2017 wrote:Ok I fixed my signature not that I know what any of it means. Thank you all for your help.




    SENDING POSITIVE VIBES FOR TOMORROW!!!! :) :) :) :) :) :)
    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
    lymph nodes: 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, 6/18/17 CT Scan NED :D
    CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/17-3.1, 6/17-3.0
    Clear Colonoscopy 10/17 :D

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    susie0915
    Posts: 773
    Joined: Wed Aug 02, 2017 8:17 am
    Facebook Username: Susan DeGrazia Hostetter
    Location: Michigan

    Re: NEW-Need some positivity here.

    Postby susie0915 » Thu Sep 21, 2017 11:49 am

    I'm also sending positive vibes for tomorrow. You are going to do fine. I remember I was fine until I was taken to the operating room and was being prepped. I remember I broke out into tears and one of the nurses began singing to me. It was so calming. It was the first thing I remembered when I woke up. Please try to think positive thoughts. All your pre-op tests point to a good outcome. I'll be praying for you.
    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: 145
    Joined: Sat Sep 09, 2017 1:18 pm
    Facebook Username: Lydia Clark

    Re: NEW-Need some positivity here.

    Postby teacher2017 » Thu Sep 21, 2017 2:49 pm

    Read a horrific stat on one of these threads. Is it true that there is a 99% of colon cancer returning in 5 yrs?! Omg.
    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

    Andrea1976
    Posts: 380
    Joined: Sun Jan 03, 2016 10:32 am

    Re: NEW-Need some positivity here.

    Postby Andrea1976 » Thu Sep 21, 2017 3:46 pm

    That's NOT truth. From the info you have shared. You might still be stage 1 and completely cured by surgery alone. It seems that it might had been a polyp gone cancerous. 95% stage 1 is cured by surgery. Even stage 3 about 50% is cured by surgery alone if I remember correctly.
    Stage I
    pedunculate polyp in descending colon
    moderately diff adenocarcinoma 0.6 cm
    Tumor confined to the head of the polyp
    Stalk margin 2 cm negative for dysplasia and malignancy
    Polyp removed during colonoscopy 1/15/16
    No lymphovascular involved
    No surgery
    CEA after polyp removal 0.3
    Genetic testing negative for colon and breast cancer
    39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

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    susie0915
    Posts: 773
    Joined: Wed Aug 02, 2017 8:17 am
    Facebook Username: Susan DeGrazia Hostetter
    Location: Michigan

    Re: NEW-Need some positivity here.

    Postby susie0915 » Thu Sep 21, 2017 3:58 pm

    My doctor told my I had a 10% chance of recurrence if I didn't do chemo after chemo/radiation then surgery. I chose to do the chemo after. There was some minimal residual cancer where the original tumor was located, and she said "if you do have a recurrence and didn't do chemo, I wouldn't want you to wonder what if?" So I chose to do the 6 rounds of Xelox. She couldn't be sure that no cancer cells go into the blood stream even though no metastasis or lymph node involvement. Also, before starting treatment the radiation oncologist told me they were curing me. So I don't know where you read that stat, just looking at this board you can see there are so many that have been ned for quite some time. My oncologist also told me most recurrences happen within two years of diagnosis.

    Please try not to worry so much, stay positive and concentrate on getting well from you surgery tomorrow. Like I said all your pre op tests are very positive for being cured. Hugs
    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

    stu
    Posts: 700
    Joined: Sat Aug 17, 2013 5:46 pm

    Re: NEW-Need some positivity here.

    Postby stu » Fri Sep 22, 2017 2:14 am

    All the best for today . Before you know it you will be well on the road to recovery .
    Take care,
    Stu
    supporter to my mum who lives a great life despite a difficult diagnosis
    stage4 2009 significant spread to liver
    2010 colon /liver resection
    chemo following recurrence
    73% of liver removed
    enjoying life treatment free
    2016 lung resection
    Oct 2017 nice clear scan . Two lung nodules disappeared


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