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jmn
Posts: 12
Joined: Sat Aug 11, 2018 8:20 pm

New to the forum ...

Postby jmn » Sat Aug 11, 2018 10:53 pm

Glad to be here! I came across this forum last month shortly after being diagnosed with colon cancer. What a welcoming and supportive community for folks who have been thrust into the scary and confusing world of cancer. The information and resources this forum provides, along with personal stories of struggle, courage, and inspiration, have been such a blessing to me that I felt compelled to join and contribute to the conversations. See my signature for a quick synopsis of my journey to date.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, T4aN0M0
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (Capecitabine) monotherapy

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: New to the forum ...

Postby Caat55 » Sun Aug 12, 2018 12:03 am

Welcome to the club no one ever wanted to be part of but is grateful to learn from other members.
S
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
CT NED 9/2018

Champ
Posts: 3
Joined: Sat May 19, 2018 11:58 am

Re: New to the forum ...

Postby Champ » Sun Aug 12, 2018 7:20 pm

How are you coming with the recovery from anemia? I have a similar Dx as yours, it has taken me 3 months after surgery for hemoglobin to recover.
56 yrs old male
4/17/18 slightly anemic dr says hemoglobin 10.2
5/16/18 colonoscopy
5/31/18 Surgery Right Hemi 12” of colon taken resection
T3n0m0 stage 2a
Observation

Lee
Posts: 5723
Joined: Sun Apr 16, 2006 4:09 pm

Re: New to the forum ...

Postby Lee » Mon Aug 13, 2018 5:09 pm

Welcome, sorry for the reason you are here. Yes these forum is wonderful with a lot of knowledgeable people. And lots of support.

Make yourself at home,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

WarriorSpouse
Posts: 148
Joined: Tue Aug 16, 2016 9:02 pm

Re: New to the forum ...

Postby WarriorSpouse » Mon Aug 13, 2018 5:44 pm

I am sorry that your diagnosis brought you here, but YES, this is a decent place to gain knowledge, witness support, and help you understand that you are not alone on this journey.

My favorite on this blog is the search bar on the upper left of your screen. Search key words and you can lean much from the many who participate here, both past ad current.

Thank You Colon Club for making and maintaining this forum!
Welcome.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

jmn
Posts: 12
Joined: Sat Aug 11, 2018 8:20 pm

Re: New to the forum ...

Postby jmn » Mon Aug 13, 2018 8:56 pm

Champ wrote:How are you coming with the recovery from anemia? I have a similar Dx as yours, it has taken me 3 months after surgery for hemoglobin to recover.

Glad to report that I’ve fully recovered from my anemia. Diagnosed with severe iron deficiency anemia on 5-11-18, my hemoglobin level was dangerously low at 4.5 g/dl — the normal range is 13.5 to 17.5 g/dl for men. I was immediately admitted to the hospital, where I received blood transfusions and iron intravenously. My blood level was 7.7 g/dl when I was discharged a few days later. My doctor prescribed iron tablets, which caused my blood level to increase steadily over the next two months to 13.0 g/dl on 7-17-18. It was 13.7 g/dl last Wednesday, 8-8-18.

Although my anemia adversely affected my preexisting heart problems and rendered me fatigued, short of breath, and struggling to carry out routine tasks, it nonetheless started my doctors on an earnest search for the cause of my very low red blood count. After a battery of tests, including a colonoscopy which revealed a “large fungating mass in the cecum,” I was subsequently diagnosed with Stage IIA colon cancer.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, T4aN0M0
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (Capecitabine) monotherapy

User avatar
bitchslapped
Posts: 1502
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: New to the forum ...

Postby bitchslapped » Tue Aug 14, 2018 10:11 pm

Welcome to Colon Talk. Very glad to hear that this forum has been a help to you already! BTW, kudos to you for filling out a signature. :)

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Beckster
Posts: 283
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New to the forum ...

Postby Beckster » Wed Aug 15, 2018 9:46 am

Welcome to the forum... a place where no one really wants to be, but worth it. I too am a Stage IIA right sided colon cancer with 0/24 nodes. However, according to the pathology report, I have a Grade 3 tumor with LVI. I took Xeloda (pill form of 5/FU) for 6 months. It will be 2 years in November...so far, so good! Mine was found during a routine screening...not anemic and perfect blood work....go figure :shock:

If you have any questions or need to share experiences, I am just a message away!

Beckster
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

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: New to the forum ...

Postby O Stoma Mia » Wed Aug 15, 2018 1:38 pm

DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Stage IIA, T3N0M0
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
0/24 lymph nodes; no high-risk factors
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: no chemotherapy; observation/surveillance


Welcome to the Forum, and thanks very much for creating a signature.

If you are in fact Stage II-A with no high-risk factors, then you are in very good shape to make it through to total remission.

What I wanted to say, though, is that the risk factors that the doctors are looking at are only a subset of all the relevant risk factors. Your doctors are only looking at the clinical and pathologic risk factors from the lab tests, scans, and pathology reports. There are other risk factors that could be considered, including environmental, genetic, behavioral and life-style factors. All of these together form your expanded risk-factor profile.

What I would suggest is that you have a look at additional colorectal cancer risk factors to see if, in fact, you have no high risk factors -- including any of the ones in the "other" category mentioned above.

One way to do this is to look at the list of 13 colorectal cancer risk factors published by Mayo Clinic (click on the link below and scroll down to the bottom to the Risk Factor section)

https://www.mayoclinic.org/diseases-conditions/colon-cancer/symptoms-causes/syc-20353669

If you don't have any of these 13 risk factors, then you can feel fairly confident that you do not in fact have any high-risk factors in your profile. If you have any of these other risk factors, however, and if any of them are changeable, then you could consider making changes to your lifestyle so as to lower your overall risk level in the months ahead.

jmn
Posts: 12
Joined: Sat Aug 11, 2018 8:20 pm

Re: New to the forum ...

Postby jmn » Wed Aug 15, 2018 8:02 pm

O Stoma Mia wrote:
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Stage IIA, T3N0M0
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
0/24 lymph nodes; no high-risk factors
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: no chemotherapy; observation/surveillance


Welcome to the Forum, and thanks very much for creating a signature.

If you are in fact Stage II-A with no high-risk factors, then you are in very good shape to make it through to total remission.

What I wanted to say, though, is that the risk factors that the doctors are looking at are only a subset of all the relevant risk factors. Your doctors are only looking at the clinical and pathologic risk factors from the lab tests, scans, and pathology reports. There are other risk factors that could be considered, including environmental, genetic, behavioral and life-style factors. All of these together form your expanded risk-factor profile.

What I would suggest is that you have a look at additional colorectal cancer risk factors to see if, in fact, you have no high risk factors -- including any of the ones in the "other" category mentioned above.

One way to do this is to look at the list of 13 colorectal cancer risk factors published by Mayo Clinic (click on the link below and scroll down to the bottom to the Risk Factor section)

https://www.mayoclinic.org/diseases-conditions/colon-cancer/symptoms-causes/syc-20353669

If you don't have any of these 13 risk factors, then you can feel fairly confident that you do not in fact have any high-risk factors in your profile. If you have any of these other risk factors, however, and if any of them are changeable, then you could consider making changes to your lifestyle so as to lower your overall risk level in the months ahead.

Thank you, O Stoma Mia, for welcoming me to the forum and for suggesting that I look at the list of 13 colon cancer risk factors published by the Mayo Clinic. Although I'm currently making lifestyle changes around diet, exercise, and weight to lower my overall risk of recurrence, there are three risk factors that I cannot change: I'm over 50, African American, and diabetic. I'll discuss my expanded risk-factor profile with my doctors to determine whether to proceed with close observation, as recommended, or consider other treatment options at this time.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, T4aN0M0
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (Capecitabine) monotherapy

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Metronomic Chemotherapy

Postby O Stoma Mia » Thu Aug 16, 2018 3:53 am

Thank you for your reply.

It's good that you will try to see your doctor about the expanded risk-factor issues. If the conversation shifts to the possibility of doing some kind of chemo instead of your current "no chemotherapy" regimen, then you should be prepared to discuss the area of "metronomic chemotherapy", which is a very low-dose, maintenance type of chemo that doesn't have the bad side effects of the normal first-line chemo regimens. There are a number of people on this forum who have used this approach in the past.

Here is an overview article on metronomic chemotherapy:

Metronomic Chemotherapy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4156829/

Here is an example of metronomic chemotherapy in conjunction with celecoxib (XCEL or ADAPT)
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58498&p=460472&p=460472#p460472

You can also read about this by looking at a number of past posts by rp1954 on this topic:

rp1954 posts on low-dose metronomic maintenance therapy

shatley01
Posts: 1
Joined: Sun Aug 19, 2018 9:40 am

Re: New to the forum ...

Postby shatley01 » Sun Aug 19, 2018 10:45 am

I am also new to the forum but unfortunately not new to colon cancer. My husband, diagnosed with stage 3C at 45 (NO family history), has been fighting his battle for 4 years now. I wish I could have found you all 4 years ago when I felt all alone, scared and uneducated about colon cancer. I hope this forum and it's members can help shed light on some of the things we struggle with. Thank you for the add.



Husband diagnosed at 45
Stage 3C (almost enough in lympnodes to be stage 4)
11/14 emergency surgery to remove 18" colon & football size cancer tumor
12/14 received port
1/15 started 12 rounds of chemo (Xolada,Folfox, Oxi), completed 11 rounds
Currently discussing colostomy reversal

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: New to the forum ...

Postby O Stoma Mia » Sun Aug 19, 2018 1:10 pm

Hi Shatley01 -

Welcome to the forum, and feel free to post messages about any of your concerns. To post a new message on your own topic, use the NewTopic link below:

Create a New Topic
https://coloncancersupport.colonclub.com/posting.php?mode=post&f=1

I notice that you have typed a signature inside the text of your first post. That's good, but it would be even better if you could put the same info in a signature block. In that way your signature will automatically appear at the bottom of each post you submit without having to type it again and again each time you post a message.

The instructions for doing this are in the link below. You have to first open the Edit Signature page and then type all of your information there, and then click on the Submit button.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

jmn
Posts: 12
Joined: Sat Aug 11, 2018 8:20 pm

Re: New to the forum ... UPDATED

Postby jmn » Sun Sep 30, 2018 12:09 am

O Stoma Mia wrote:Thank you for your reply.

It's good that you will try to see your doctor about the expanded risk-factor issues. If the conversation shifts to the possibility of doing some kind of chemo instead of your current "no chemotherapy" regimen, then you should be prepared to discuss the area of "metronomic chemotherapy", which is a very low-dose, maintenance type of chemo that doesn't have the bad side effects of the normal first-line chemo regimens. There are a number of people on this forum who have used this approach in the past.

Here is an overview article on metronomic chemotherapy:

Metronomic Chemotherapy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4156829/

Here is an example of metronomic chemotherapy in conjunction with celecoxib (XCEL or ADAPT)
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58498&p=460472&p=460472#p460472

You can also read about this by looking at a number of past posts by rp1954 on this topic:

rp1954 posts on low-dose metronomic maintenance therapy


Since my last post, I talked further with my oncologist about treatment options. He nixed the idea of initiating adjuvant therapy, including low-dose metronomic chemotherapy. While acknowledging some risk factors over which I have no control—e.g., over 50, African American, diabetes, and right-sided tumor—he reminded me that the standard of care for Stage IIA colon cancer without high-risk prognostic features is surgical resection followed by surveillance. His recommendations for follow-up care aligns with current clinical practice guidelines.

I’ll visit with Dr. Leonard Saltz at MSKCC on October 11, 2018. He is willing to review my case and provide a second opinion, but he made it clear from the outset that he would not support the use of low-dose metronomic chemotherapy as a treatment option for me. I’m moving forward with my appointment with him because I want to gain greater clarity about my risk of recurrence; consider what steps can be taken to prevent the cancer from coming back given my individual profile; and have a frank discussion of the risks and benefits, the pros and cons of receiving adjuvant therapy or not. In the end, it’s all about doing my due diligence—to gain greater peace of mind and assist me in making informed decisions about my health and well-being.

Does anyone have suggestions for me as I prepare for my appointment with Dr. Saltz? Are there any Stage IIA folks on this forum who received low-dose metronomic chemotherapy after surgical resection? What treatment, if any, did you receive or are you receiving?
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, T4aN0M0
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (Capecitabine) monotherapy

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Stage IIA - New to the forum ... UPDATED

Postby O Stoma Mia » Sun Sep 30, 2018 4:08 am

jmn wrote:...Does anyone have suggestions for me as I prepare for my appointment with Dr. Saltz? Are there any Stage IIA folks on this forum who received low-dose metronomic chemotherapy after surgical resection? What treatment, if any, did you receive or are you receiving?

Thanks for posting an update well in advance of your appointment. This will give time for some Stage IIA folks to see your post and to reply if they have any comments to offer.

My main comment would be for you to address the issue of your MSI-status (if you know what it is). If you are Stage IIA and possibly considering chemo, then it is important to know whether you are MSI-H or MSS. About 16% of all CRC patients are MSI-H, and for patients in this category research has shown that first-line chemotherapy involving 5FU is not so useful, and may even be damaging. So this issue might come up in your meeting.

The MSI-H vs MSS distinction for Stage IIA patients is discussed in the NCCN guidelines below:
NCCN Guidelines on Colon Cancer - (see p. 42 for Stage IIA recommendations)
https://www.nccn.org/patients/guidelines/colon/files/assets/common/downloads/files/colon.pdf

There is also the Oncotype-DX test that Stage IIA patients sometimes use to get an idea of their risk of recurrence. This topic, too, might come up in your meeting.
Oncotype-DX test for colon cancer
http://www.genomichealth.com/en-US/oncotype_iq_products/oncotype_dx/oncotype_dx_colon_cancer

If you are going to consider any kind of chemotherapy, then you should understand that chemo has both short- and long-term effects. The diagram in the article below gives an idea of some of the side effects to expect.
The Effects of Chemotherapy on Your Body
https://www.healthline.com/health/cancer/effects-on-body#1

There is also the issue of left-side tumors vs. right-side colon tumors, and since you had a right-side tumor the doctor might have some comments to say about this.

There are a number of members of this board who were diagnosed as Stage IIA. Some of them opted for "no chemo" and haven't been heard from since. Others had one or more high risk factors and opted, instead, to go for adjuvant chemo. One in the latter category is member, Beckster, who was diagnosed Stage IIA about two years ago, and whose signature tells the story.

There are others in the same category. Basically, you have to go through and assess all of your risk factors and then make your own decision after discussing the available options with your doctor.


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