Age 30 (M) Recently Diagnosed, Family History

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Age 30 (M) Recently Diagnosed, Family History

Postby susie0915 » Mon Nov 20, 2017 3:47 pm

Aqx99 wrote:
susie0915 wrote:
NHMike wrote:Thanks for the note on First Bite - first time I've heard of that one.

There are a few on here who have had it. I don't think it's a common side effect. The first time was shocking, after that I was ready for it. It is weird though, you have that pain when you take your first bite of something, then any subsequent bite is fine. Only lasted a day or two.


I have had it, as well. I hate when I forget about it and start to eat and it hits. If I remember, I can be ready for it.

That is so true. There were a couple times I just bit down and wow. If I remembered, would go slowly and rub my jawline. It is a shocker the first time though.
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

heiders33
Posts: 235
Joined: Sat Nov 04, 2017 11:08 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby heiders33 » Mon Nov 20, 2017 5:07 pm

I have first bite pretty bad. It’s been one week since my infusion and it’s only just now starting to go away.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

veckon
Posts: 130
Joined: Thu Jul 27, 2017 7:44 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby veckon » Mon Nov 20, 2017 8:27 pm

I am not sure I experienced the first bite everyone else has since I wouldn’t describe the experience as necessarily painful, but I definitely went through something similar. When I took the first bite of something my tongue would react as if I had eaten something extremely sour and feel really weird for a minute. Then it goes away.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

sealdog
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Facebook Username: nathan.seal.3

Re: Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Tue Nov 28, 2017 8:41 pm

Surgeon rang me last week about my concerns, said he operates at "12 weeks, 16 weeks, 20 weeks etc" and has no concerns for me at 20 weeks, Dec 18th.
Put my mind at ease for a little bit, I guess it's not an exact science and they base there decisions on what's in front of them.
Still hanging for the surgery even though these are my last days feeling "complete" I guess, but the mental limbo is astonishingly hard. Thought I would enjoy it more but I really can't enjoy anything other than progress.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Basil » Tue Nov 28, 2017 9:03 pm

sealdog wrote:Surgeon rang me last week about my concerns, said he operates at "12 weeks, 16 weeks, 20 weeks etc" and has no concerns for me at 20 weeks, Dec 18th.
Put my mind at ease for a little bit, I guess it's not an exact science and they base there decisions on what's in front of them.
Still hanging for the surgery even though these are my last days feeling "complete" I guess, but the mental limbo is astonishingly hard. Thought I would enjoy it more but I really can't enjoy anything other than progress.


I had those same thoughts about my last days of what your brain says is “complete.” Nervous as hell. I had a LAR/TME (which you should be in line for) with a tumor at 7cm.

I recovered great from the LAR, although I got a temp ostomy and lost 90% of my rectum. Reversed that and two months later I’m doing great. No serious complaints and life is normal. Hope you have the same -
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

sealdog
Posts: 19
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Wed Nov 29, 2017 8:52 pm

Basil wrote:I had those same thoughts about my last days of what your brain says is “complete.” Nervous as hell. I had a LAR/TME (which you should be in line for) with a tumor at 7cm.

I recovered great from the LAR, although I got a temp ostomy and lost 90% of my rectum. Reversed that and two months later I’m doing great. No serious complaints and life is normal. Hope you have the same -


Cheers Basil. My tumor is a t3 and at 7-8cms so I'll be heading down the same path, hope to have the same outcome :)
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

sealdog
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Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Fri Dec 15, 2017 1:00 am

Surgery this Monday. Nervous as hell but going to try to enjoy the weekend, fancy dinner Saturday night as it might be my last for a long, long time!
Any tips for an extended Hospital stay? I imagine I'm going to be out of it for days so won't be worried about comforts until maybe the last couple of days.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby NHMike » Fri Dec 15, 2017 5:07 am

sealdog wrote:Surgery this Monday. Nervous as hell but going to try to enjoy the weekend, fancy dinner Saturday night as it might be my last for a long, long time!
Any tips for an extended Hospital stay? I imagine I'm going to be out of it for days so won't be worried about comforts until maybe the last couple of days.


I focused on preparation and process the few days before surgery as the directions are detailed and many and my logistics were complicated.

Have someone bring you your things as they don’t like to hold a lot of things for you and don’t bring heavy things as you may not be able to lift and carry them. There’s a great deal of detail in my long thread going over my prep and what I went through after surgery. I also did a lot of strength training in the weeks before surgery to help speed recovery.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

henry123
Posts: 118
Joined: Sun Oct 08, 2017 3:25 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby henry123 » Fri Dec 15, 2017 5:44 am

Sealdog,

Best of luck for your surgery.

I also have Lynch. Genetics counsellor told me we ( those with Lynch) all probably have a common ancestor somewhere up our family tree.

Have you discussed immunotherapy with your oncologist.

Awareness / acceptance of immunotherapy is still low especially in Onco surgeons.

Once again , Best wishes..
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear .
NED
Vegan yoga juicing apricot

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ocstacy
Posts: 238
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Re: Age 30 (M) Recently Diagnosed, Family History

Postby ocstacy » Tue Dec 19, 2017 3:15 am

1) Would you go down this path at my age with treatment? It seems old hat, that much better alternatives might exist.

2) Surgeon told mum that her and I are "100% Lynch" based on what he has seen. He was amazing with Mum but I am struggling to accept his treatment plan armed with more information about our situation (Immunotherapy?)


1.) I would def. research through reviews for a great board certified colorectal surgeon. I found my mom's through Yelp.com! USC colorectal surgery center had really good reviews and I interviewed some of the patients to hear their experience and they were all very pleased. We had to drive an hour each way, but it was really worth it. They are the best in the country so that made me feel more comfortable. The orig. surgeon the GI wanted to send us to had HORRIBLE reviews. I even had to switch my mom's insurance around so she would get seen at the best hospitals for her TX and surgery. My mom had her surgery on 10/17/17 and now has a temp ileostomy pouch. I didn't understand it either but now it's all a piece of cake. My mom is used to it and doing much better and had a "NEAR PATH. RESPONSE" (no lymph's effected) they got all the cancer but she will do clean up chemo for the next 6 months to get the microscopic floating watchamacallit's, to prevent any type of spread or new growths.

2.) Prior to my mom getting diagnosed, her Dr. thought she had bone cancer, lupis, etc. She actually had osteoporosis.. I actually diagnosed my mom and sent her to get a colonoscopy stat cause I knew in my heart something was very wrong after she told me what her symptoms were. She was always in pain in her pelvic area.. I am so mad that my father or brother never saw her in so much pain while living with her. You go with your gut feeling but do know to go to an experienced Dr. that specializes in this type of colorectal surgery. (LAP) I would think you would be getting neoadjuvant therapy for 6 weeks, than break, than surgery, than break, than clean up chemo right?
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Reversal 07/2018?
Me: Colonoscopy age 38. 08/17 Benign polp. internal hemmy's post partum

sealdog
Posts: 19
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Mon Dec 25, 2017 8:51 pm

Hey everyone,

Currently recovering from my robotic ular last monday, boy that was tough! While I don't have any reports yet, my surgeons kept saying "it was a great success, we got it all out." One even said "they cut underneath the base of the tumor stem cell", which i assume means clear margins.
They were overtly happy, i was on another planet with the morphine ha. Fingers crossed for the report.

Dealing with the pain and temp ostomy at moment but I'm moving more everyday and have great support. I'm really happy I waited for the robot I could only imagine the pain of open surgery.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby NHMike » Mon Dec 25, 2017 9:06 pm

sealdog wrote:Hey everyone,

Currently recovering from my robotic ular last monday, boy that was tough! While I don't have any reports yet, my surgeons kept saying "it was a great success, we got it all out." One even said "they cut underneath the base of the tumor stem cell", which i assume means clear margins.
They were overtly happy, i was on another planet with the morphine ha. Fingers crossed for the report.

Dealing with the pain and temp ostomy at moment but I'm moving more everyday and have great support. I'm really happy I waited for the robot I could only imagine the pain of open surgery.


Glad you’re doing well and I hope you have a rapid recovery.

Definitely makes you feel better when your team is happy too.

I had open surgery and didn’t have much pain but the physical restrictions have been a nuisance. Also, you will get better at the Ostomy stuff though I think that the overall process of product and usage discovery is quite challenging.

I asked why my surgeon chose open surgery and she told me that it was due to a small pelvis and she did tell me beforehand.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Aqx99
Posts: 400
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Aqx99 » Tue Dec 26, 2017 6:35 am

sealdog wrote:Hey everyone,

Currently recovering from my robotic ular last monday, boy that was tough! While I don't have any reports yet, my surgeons kept saying "it was a great success, we got it all out." One even said "they cut underneath the base of the tumor stem cell", which i assume means clear margins.
They were overtly happy, i was on another planet with the morphine ha. Fingers crossed for the report.

Dealing with the pain and temp ostomy at moment but I'm moving more everyday and have great support. I'm really happy I waited for the robot I could only imagine the pain of open surgery.


Glad to hear you are doing well. You will get used to your temporary ileostomy. Getting a pouching system that works for you is key. Make sure you work with an ostomy nurse to find the best products for you. I've had mine for 6 months and I have times when I almost forget I have it.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, 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 Diagnosed 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
9/18 Bilateral Prophylactic Mastectomy

sealdog
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Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Tue Jan 09, 2018 4:02 am

Just a quick one, got my pathology results today. I had a complete pathological response to neoadjuvant therapy.
No cancer traceable in the 15 lymph nodes and tissue removed. They believe its reasonable to think I was closer to stage 2 than 3. Chemo may not be necessary and reversal of stoma soon.

Today was a good day. It's been so long without hearing good news. I wish you all the same feeling.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

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Atoq
Posts: 264
Joined: Wed Oct 25, 2017 9:31 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Atoq » Tue Jan 09, 2018 7:37 am

Such good news! I am really happy for you! :D

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery


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