Things people say or don't say but it's okay

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mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Things people say or don't say but it's okay

Postby mpbser » Wed Jun 28, 2017 1:19 pm

Bev,

The MSKCC nomogram webpage doesn't say that it is NOT valid for those of with mCRC, so how did you come up with this? In fact, the selection criteria for the STAGE field are : T1, T2, T3, T4. I'd really like to know where you got that info. Thanks.

Christine
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Things people say or don't say but it's okay

Postby mpbser » Wed Jun 28, 2017 1:20 pm

kellwin,

Please reread my post and see what I wrote. Your message IS an attack. In fact, it's a straw man attack.

Christine
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Things people say or don't say but it's okay

Postby ams5796 » Wed Jun 28, 2017 1:24 pm

Some of us have been around here for many years. I was diagnosed more than ten years ago and I have seen many people come and (unfortunately) go from this site. Most of them (including me) have not had unhealthy lifestyles before diagnosis. It's a bit insulting to have a relatively new caregiver come on here and tell us that we caused our cancer. There are many factors that cause cancer.

Your post would be in the category of things not say to folks with cancer.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

BIG ROB 69
Posts: 63
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Things people say or don't say but it's okay

Postby BIG ROB 69 » Wed Jun 28, 2017 1:34 pm

Not to mention that we're just talking about cancer here. What about the shitload of other diseases we have, or all the environmental factors we face on a daily. If you have to change your clothes, change ALL your clothes. You can change 99% of your life, but if you shower in the same place...
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Things people say or don't say but it's okay

Postby mpbser » Wed Jun 28, 2017 1:40 pm

Ann,

I didn't say that and like Kellywin, you are making a straw man argument.

"I don't think that there is any question that my husband's lifestyle caused his cancer. Even he recognizes this. The most important thing is that he knows it wouldn't hurt to try." -- was speaking for myself and husband.

As far as anyone else goes, what I said was:

Bowel cancer is probably one of the cancers where lifestyle habits have the highest impact on risk. (ME: no duh) Therefore, lifestyle habits have the highest impact on cure. In other words, when it is estimated that 47% of colorectal cancers could be prevented by appropriate lifestyles, it stands to reason that CRC could be reversed by extremely healthy lifestyles.

Sarah, I don't know why I missed your comment until now. Glad you found the post helpful!

- Christine
Last edited by mpbser on Wed Jun 28, 2017 2:40 pm, edited 1 time in total.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

inorganic8
Posts: 50
Joined: Mon Feb 27, 2017 6:13 pm

Re: Things people say or don't say but it's okay

Postby inorganic8 » Wed Jun 28, 2017 1:42 pm

I do not read mpbser's statements as blaming any of us for our cancer. I see someone doing everything in her power to get a handle on a difficult situation and try to affect the outcome. I am doing the exact same thing. I've spent weeks researching HIPEC, folfirinox, avastin, and all sorts of other conventional medicine and now consider myself as having a doctorate in Google (I don't). I want to improve my husband's chances of survival. I'm a smart woman and I have a couple of degrees, so I should be able to right? Also my preferred route is about as Western as Western medicine gets. For those who choose other routes, I will respectfully agree to disagree.

I have zero credentials in psychology or sociology, but there is one thing I've observed about human nature. I'm going to refer to a situation that is not completely analogous, but that I think will make my point. Do you remember a few decades ago when young Elizabeth Smart was kidnapped? There were a whole lot of people looking for every possible thing to criticize her parents. (I have no opinion on which, if any, of these criticisms was fair.) What I do think, is that none of the critics were scrutinizing the Smarts because they were mean and wanted the Smarts to feel even worse than they already did. I think every one of those criticisms came from a deep-rooted fear that this could happen to their child. If they avoided everything wrong that these "bad" parents did, their children would be safe. We all know that this story ends with Ms. Smart becoming an amazing young woman.

I hear that some of you are hurt by that first post. Those are your feelings and it is not my intent to invalidate them. I can't read mpbser's mind and I certainly have no business putting words in her mouth. I just don't read it as someone criticizing the rest of us for choosing the wrong treatment. I don't read it as her blaming any of us for your cancer, or my husband's cancer. I read that post as coming from someone looking for something/anything she can do to affect the outcome, that being a healthy and long-lived spouse.

I'm extending an olive branch to everyone. I hope we can all understand each other better.

Warmest regards to all,
Kim
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly
June 12, 2019 At Peace

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Things people say or don't say but it's okay

Postby mpbser » Wed Jun 28, 2017 1:44 pm

BigRob 69,

Yes, completely understood, especially for those unable to relocate. I moved out of the NYC area after 9-11 for environmental reasons. Doing so saved my life.

- Christine
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

DanInMN
Posts: 87
Joined: Mon Apr 02, 2012 11:18 pm

Re: Things people say or don't say but it's okay

Postby DanInMN » Wed Jun 28, 2017 1:59 pm

mpbser wrote:In other words, when it is estimated that 47% of colorectal cancers could be prevented by appropriate lifestyles, it stands to reason that CRC could be reversed by extremely healthy lifestyles.


If 50% of amputations can be prevented by avoiding heavy machinery, it stands to reason that limbs can be regrown by extreme distancing. Our super-expensive supplements will help you know when you are close to farm equipment.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Things people say or don't say but it's okay

Postby benben » Wed Jun 28, 2017 2:15 pm

Sorry guys, but healthy lifestyle is not the end all be all that some might presume.
If ever anyone can attest to that it would be myself. That said I did have some years of non-healthy living in my early 20's.
Probably could have done more exercise, drank less booze, ate less fast food, and smoked less cigarettes. (smoked about 2 years)

However by the time I hit 27, I drastically changed my lifestyle. I rarely ate out, ate majority of veg/fruit, worked out 3 days a week, played highly active sports ate very little red meats and drank next to zero alcohol (less than a beer per yer).
The heaviest I ever was in my life was 191 (at 27 years of age) and I stand about 5'10. Up until I was diagnosed 17 years later I have adapted healthy lifestyle, I toned up muscle and lost fat.
My body fat percentage at diagnosis was 16.9%. I was lifting 240 lb bench weighing in at 183lbs 2 days before my diagnosis. 6 months prior I was playing college league basketball with college athletes and
keeping pace with them. A tremendous amount of high intensity running. Nobody ever believed I was a day over 30 that I played with and were completely blown away if I actually told them my age.
A healthy lifestyle will give you a multitude of advantages in life. I fully suggest everyone live as healthy as they can at all times. One thing to note however is that those with higher body fat percentage seem to be less negatively effected by chemo. Unfortunately for me Chemo seems to really destroy my WBC and the cure (Granix shot) comes with extremely severe pain and a destruction of red blood cells and kidney stress. I'm not sure how long I can keep doing chemo without some serious possible damage to my organs/bone marrow etc, but I will continue as long as I can as the statistics suggest its my best possible chance of "Cure". Hoping to make at least 6 sessions, possibly 8 and then most likely reduction to 5FU only... Who knows what the future holds, this path demands flexibility as things change quickly. One thing I'm pretty certain of, that getting cancer is not always a matter of sedentary lifestyles, unhealthy diets, and lack of supplemental nutrition.

Peace to all, our paths are difficult.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Things people say or don't say but it's okay

Postby Bev G » Wed Jun 28, 2017 2:42 pm

mpbser wrote:Bev,

The MSKCC nomogram webpage doesn't say that it is NOT valid for those of with mCRC, so how did you come up with this? In fact, the selection criteria for the STAGE field are : T1, T2, T3, T4. I'd really like to know where you got that info. Thanks.

Christine


Christine, the T analysis does NOT equate with stage. I think there is a sticky that explains the T designations. I just checked the NCI website. They quote 5-year survival for stage IV at 8%. It seems to me, anecdotally, that these numbers are improving a little.

You said:

When we use the prognosis calculator at Memorial Sloan Kettering's website, the predicted rate of disease-free survival at 5 years is 87 or 88% (I can't recall exactly which) and of disease-free survival at 10 years is around 81%. I don't think that makes for a sad situation in the least. Sure, chemo will take its toll and the next year or so will be really rough, but we will get through it.

From the MSKCC website:

Our disease-free probability nomogram is a tool designed to predict the likelihood of remaining free of colon cancer at five years and ten years after undergoing a complete resection (surgical removal of all cancerous tissue). It is appropriate for patients whose colon cancer had shown no evidence of metastasis, or spread beyond the colon, before surgery or at the time of surgery.

I'm sorry the prognosis is so different than what you understood. It's a wicked, wicked disease.
Last edited by Bev G on Wed Jun 28, 2017 3:10 pm, edited 2 times in total.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Things people say or don't say but it's okay

Postby stu » Wed Jun 28, 2017 2:45 pm

Hi Benben,
I think your right about the path being difficult. It certainly helps your general health to be in good shape.
I think we have all made numerous attempts to try and get some control on a situation that feels largely out of control . The more my mum has to endure the more I realise developing strategies to deal with coping with the unknown was more helpful.
Some people made suggestions to my mum from their nursing experience that ended thirty years ago. It created a problem but I had to work round it as it was fixed in her mind . However with time it subsided.
Time changes our knowledge and our approach .
Take care everyone ,
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
Oct 2018. Another clear scan .

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Things people say or don't say but it's okay

Postby bitchslapped » Wed Jun 28, 2017 2:53 pm

It doesn't take long to understand that people find value on this forum, come here for the science-based approach to newest cancer therapies & support thereof. The mpbsers' no exception, regardless of what is touted. All obese individuals do not get cancer. You will not eat yourself out of a cancer dx. Heart disease, diabetes cannot be compared to cancer re: diet & reversal.

Common sense remains that if one wants to feel better, have their body perform what is asked of it other than being a couch potato, help sustain one's overall well being during the rigors of chemo, then a diet of doughnuts won't cut it. No one will argue that healthy eating is certainly the best approach.

It doesn't matter what any of us think. You've asked questions, rec'd answers based on the opinions of others who have been through it. You now know the "flavor" of the forum & have for some time. Graciously accept what is offered based on the tenor of the forum. Stop trying to convince all of use poor, bullying, misinformed misfits, that yours is the path to the cure.

It is unfortunate that you are facing this in a young marriage. Everyone here is loved by & loves someone. You are no exception. Everyone has a story to tell.

We understand the devastation of a cancer dx.

Just do what you need to do. Not everything needs to be about proving a point.

On this forum we will always send best wishes to cancer patients & their families regardless.
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, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Things people say or don't say but it's okay

Postby Maggie Nell » Wed Jun 28, 2017 3:44 pm

Two things to Google:

(1) Belief Perserverance
(2) Ignaz Philipp Semmelweis
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Things people say or don't say but it's okay

Postby Lee » Wed Jun 28, 2017 4:52 pm

mpbser wrote:
* Bowel cancer is probably one of the cancers where lifestyle habits have the highest impact on risk. (ME: no duh) Therefore, lifestyle habits have the highest impact on cure. In other words, when it is estimated that 47% of colorectal cancers could be prevented by appropriate lifestyles, it stands to reason that CRC could be reversed by extremely healthy lifestyles. Besides, it couldn't hurt to try and if husband is doing chemo, it certainly would help to try to be in the best physical shape possible to counteract the damaging effects of such treatment.
.


I truly wish the above statement was true. BUTT in my family that is just not the case.

My mother was a lot like your DH. 100+ pounds over weight, loved her junk food, did not exercise, smoked till the day she died. At 55, she had a colonoscopy, no cancer, not even one polyp. Was told to come back in 10 year. She died in her mid 60's from cigarette smoking and being overweight. Never got cancer.

Me, I've been a healthy weight most of my life. I am a healthy weigh today, I struggle with my weight today (menopause is a bit**). Butt I am a member of Weight Watchers to keep my weight under control. The only time in my life I have been overweight was following chemo. I was one of those few people who actually gained weight while on chemo. Was under Onc orders not to lose any weight and she was happy when I was gaining weight and I continued to do so for the next few years. I was 3 1/2 year out from diagnoses when I was finally told I could lose weight, butt it had to be slowly. Thus I joined weight watchers. My primary Dr wants me to be healthy weight today because heart disease and diabetes does runs in both sides of my family. Being of healthy weight and life style I have neither today.

I've been a power walker most of my adult life. Only time I did not was when I was raising young kids. I grew up on down hill skies and I have in swam in lakes and oceans most of my life (we had a boat). When I worked in downtown Denver, I was a member of YMCA where they offered exercise classes. I have always been a very active person. Even today I generally do 10,000 to 15,000 steps a day.

I eat healthy, love my veggie, even as a kid, & not trying to pour salt on something I hope is not a open wound, butt I love my broccoli too. Because I am a member of weight watchers today, have been for over 10 years now, most of my food is made from scratch and is deeded very healthy.

Yet, I will never be allowed to go beyond 3 years for colonoscopies? Why, because every time I get scoped, they find more polyps in me. Generally just 1 or 2, butt those polyps that like to produce cancerous cells in about 10-15 years. If it wasn't for those scopes, I would be dealing with another colon cancer about now. SO healthy life style is NOT helping me or curing me from getting another cancer. Only those scopes are preventing me from getting another colon cancer.

My husband, he gets scoped every 10 years, yet he loves his junk food. They have maybe found a totally of a 2-3 polyps in him. My brother has yet to produce even 1 polyp. He too loves his junk food. Yet my SNL gets scoped ever 3 yrs. She's like me, her bodies likes to produce those polyps. She too eats healthy. Again healthy life style is not helping her from getting colon cancer, only getting scoped every 3 years. None of us are overweight, my husband could lose a few pounds, butt no biggies. My SNL is a lot like me, we make our food from scratch, and mostly eat healthy. My DH and DB love there junk food for breakfast and lunch. Forced to eat healthy for dinner.

So your above statement does not apply to my family. And I suspect a lot of other people as well.

And when your DH is going thru chemo, please let the dear man eat what he want. Because while on chemo, junk food just taste better, it does not have such a metallic cardboard taste. And while on chemo, you really want to keep food in stomach.

All the best,

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 - 16 years and counting!

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Things people say or don't say but it's okay

Postby mpbser » Wed Jun 28, 2017 5:00 pm

Now with husband's findings from today's colonoscopy, my opinion of the causative factors behind his CC may be revised. As aforementioned, we are waiting on the Ras results. Now that he has additional polyps and another colon tumor, other genetic testing may be warranted. We will find out in Boston next week.

I appreciate the anecdotal data that contravene (yes, I treat "data" as plural) because it gives solace that so much is up to chance.

Lee: please let the dear man eat what he want. Because while on chemo, junk food just taste better...

I don't think that will be wise given his heart condition. He is on a diet prescribed by his doctors, not just me.

BS: Are you the same person who told my husband to "stop sniveling" and that he had received enough attention from the board already? I ask because your comment has the very same disrespectful tone. Why do you come on someone's thread to be like that? It's just not proper forum etiquette. Same goes for the other smattering of comments saying what I wrote was disgusting, etc., etc...
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED


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