RANDOM QUESTIONS

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Eleda
Posts: 153
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

RANDOM QUESTIONS

Postby Eleda » Wed Aug 15, 2018 6:01 pm

HI GUYS ¡!!!!!!!!!!!!
I've lots of random stuff I need help with but don't want
too keep jumping on people's threads or starting a new one for each question, so I thought I'd do this instead

Can someone tell me the actual % of effectiveness of oxi???? ( Too may conflicting reports)

I had a major leek in the hospital ( thank god) waiting to get chemo!!!!! what seemed to resemble pancake batter lol !!!!( A lot) I'm 3 months post op!!! Is this likely to happen again or is it even normal?????

Is there a correlation to BRAF without MMR ???

Thanks Adele :D
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: RANDOM QUESTIONS

Postby Caat55 » Wed Aug 15, 2018 10:01 pm

I can't speak to stats on chemo, my decision is even if it only made a small difference wouldn't it be worth it?

As to the leak, I had a few initially and then again another a few month later. It took me completely by surprise, felt the urge to go and sure enough a small amount but something for sure.

Susan
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

Eleda
Posts: 153
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: RANDOM QUESTIONS

Postby Eleda » Wed Aug 15, 2018 10:45 pm

My oncologist didn't want to try oxaliplatin again for obvious reasons, but I begged him to try again Susan so we will again on next infusion,, Extra steroid before during and after infusion and at a lowered amount (80%)
He says not to worry if I can't tolerate it because the 5fu is the most important and the oxaliplatin only adds 5/8% on top( still want it tho) many conflicting studies and reports on this info :x

As for the leek ( caught by totally suprise :shock: :shock: )
Has it happened u since?? Ur last major one??? I returned to adult depends again for fear I'd be caught out somewhere and would die of embarrassment

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: RANDOM QUESTIONS

Postby Caat55 » Wed Aug 15, 2018 10:55 pm

Adele,

I felt the urge to go and fortunately made it to the bathroom. It happened one other time about 3 weeks later and I felt it and got to toilet. But not again so I 'd guess at least two months now maybe longer. It seems it was just at the beginning of chemo. Extremely odd.
Susan
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

rp1954
Posts: 1365
Joined: Mon Jun 13, 2011 1:13 am

Re: RANDOM QUESTIONS

Postby rp1954 » Thu Aug 16, 2018 5:56 am

Researching, I found that Matsumoto's 2002 survival stats for daily, oral chemo (straight 5FU!) with cimetidine based on CA199 targeting were better than the oxi- added stats, but perhaps less favorable than without it, if CA199 values were low. Matsumoto's markers were from tumor tissues' pathology stains which have advantages over blood markers alone. Nevertheless I decided we could use blood markers to improve the odds (I also knew that "something(s)" caused a lot of tumor necroses before surgery). I decided that if pre-surgical CA199 was in the 20s-30s, I'd plan her cimetidine for a year while waiting for tissue stain work to become available for us. Even after surgery, a serum CA199 value helps the odds of correct targeting, by avoiding ultralow CA199 with cimetidine, for 8-10% of CRC patients.

We decided to seriously consider PSK for peak CEA over 3, and low dose aspirin 80-160 mg/day for the very common PIK3CA mutation (we didn't test it).
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Eleda
Posts: 153
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: RANDOM QUESTIONS

Postby Eleda » Thu Aug 16, 2018 7:45 am

RP1954
I started 800 mg of cimetdine a week prior to surgery,,, (couldn't do the MCP :mrgreen:)
:roll: :roll: I'm retrying oxi again on Tuesday so fingers crossed no major reactions,,,

My CEA is not a really good indicator as it was 4.4 prior to DX and 3 after surgery and now 4 again after round 3 of chemo
I don't have pre chrmoradiation ca19/9 but at present it is 9
But because my CEA is not a good indicator for me
I wonder does the same apply with ca19/9?????
My staining has come back MMR in tact but because of age further genetic will need to b done but for the moment they are concerned with get chemo on point,,,,

There so much confusing information on MSS and conflicting reports in relation to prognosis,,,

I've started the high iorn diet along with the Manuka honey and .Astragalus , So hopefully that will get me a bit of kudos with white blood count on wed

Susan thanks I'm hoping it won't happen again this far out because it's totally out of the blue and I was lucky I was n a hospital at the time
Otherwise I'd have died of embarrassment,,,,,

Thanks for Ur replies,, I appreciate it
ADELE
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

rp1954
Posts: 1365
Joined: Mon Jun 13, 2011 1:13 am

Re: RANDOM QUESTIONS

Postby rp1954 » Thu Aug 16, 2018 1:30 pm

The CEA-PSK correlation is from a paper as treatment predictive biomarker, entirely different from detection of CRC. The paper simply showed which people did best with PSK.

Your CEA still has potential for detection but will be somewhat increasingly distorted by chemo and months after; CA199 is even more distorted by 6 months of heavy cyclical chemo (but not my wife's immunochemo).

For peak (pre-op/pre-rad) CA199 less than 2, the papers say cimetidine is clearly useless against CRC and contra-indicated for 8-10% of CRC patients. Ditto after treatments - simply wrong biology. One could probably make a similar derivative argument for ultra low, under 1 or 2, peak CEA patients, related to CSLEX1.
Matsumoto et al (2002) suggests that cimetidine is useful for 65% of CRC patients on average (Japanese, using oral, daily 5FU for 1 year ca 1990). They showed how to quantitatively succeed for specific CRC patient biology, with added cimetidine, with tissue staining by CA199 and CSLEX1.
The stage 2-3 population with peak (pre-op/pre-rad) CA199 over 18 (about 50%), and especially higher, correlate statistically with Matsumoto's CA199 tissue stained beneficiaries. The pre-treatment in-betweeners are more speculative, presumably statistically grading with CA199 level on average. Without pre-treatment test or tissue, treatment destroys a lot of the information for now, but you are not in the flat contra-indicated group. Abdominal surgery by itself, reduced my wife's tested CA199 levels by 7 units, into the 20s, where she still had a nodal met cluster.

We try little nudges with whatever marker correlated information we can find, or just do the empirical trian. Vitamin D3, aspirin, PSK. I am not aware of a marker for astralagus extract, but it has some good recommendations over a lot of "stuff".
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

MissMolly
Posts: 556
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: RANDOM QUESTIONS

Postby MissMolly » Thu Aug 16, 2018 8:17 pm

Adele:
To answer your querie about the unexpected and unsettling discharge of “pancake batter” consistency from your backend, a few things to know:

A. Anyone with a temporary intestinal diversion, such as a loop ileostomy, will experience intermittent discharge from his/her anus on one or more occasions. Physicians rarely discuss the phenomenon with patients, leaving to a state of bewilderment when tacky and foul smelling material is first passed.

The segment of large intestine distal/away from your loop ileostomy stoma is resting and “off-line” as you are healing from the resection surgery. Digested food material is not flowing down and through the diverted segment of intestine. However, the tissues that line thr interior surface of diverted segment of is still very much alive and doing what these tissues normally do - secreting mucus and sterous secretions, bacterial remnants, and sloughing off of cellular debris. The diverted segment of intestine has no idea that it is no longer connected to the upper intestinal tract. To the diverted segment of intestine, it is business as usual.

The secreted mucus, serous fluids, cellular debris has to go somewhere. As material accumulates in the resting segment of intestine, the expansion will signal to the rectal musculature and sphincters to contract - just as would be the case with a normal bowel movement.

The end result is the passing of often days/weeks old mucus et al via the anus, a “mucus poop.” The color can be anywhere from tan to orange-ish to gray (depending on metabolic byproducts) and is often tacky, sticky, and putrid/foul in odor.

When it first occurs, most people are caught in in expecting. And, rightfully, worried/concerned. Few physicians or ancillary healthcare providers provide information of “mucus poops” beforehand.

So, to your question: “Will this happen again?”

Most likely, yes. You will likely pass additional unmentionable stuff out of your backend.

The good news is that the amount/volume will likely be less and it will be less odoriferous.

How to manage mucus poops . . .

Sitting quietly, without straining, can help pass accumulated material in the lower diverted intestine. Sitting on the toilet relays automatic neuromessaging to the defecation centers, eliciting the coordinated muscle contractions and sphincter opening to expel needed material.

If you feel an urge to have a bowel movement, honor your body’s communication and sit on the toilet (gently, quietly, without forceful pushing). Most often, you will pass accumulated material that needs to exit.

You can also use a baby/infant nose baster (used to siphon congested nasal secretions) to irrigate/flush the lowest portion of diverted intestine. Most people do this while standing in the shower. Insert the baby nose baster about 1 inch into the anus, flush with warm water (or warm soapy water or water with a touch of aloe vera juice) with a hypoallergenic soap/glycerin soap by pressing the bulb of the baster, use the suction of the baster to extract retained mucus and water which was introduced. The process sounds intimidating but is quite simple after an initial 1-2 sessions.

This may be more detail than you want or need to know, but I think it is helpful to understand/visualize how amazing the body is in its functioning, adapting, and adjusting.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

NHMike
Posts: 1685
Joined: Fri Jul 21, 2017 3:43 am

Re: RANDOM QUESTIONS

Postby NHMike » Thu Aug 16, 2018 8:45 pm

I found this mildly interesting study result (thought it doesn't specifically answer your question):

Results Among 2636 patients with stage III colon cancer treated with FOLFOX, MMR status was available for 2501. Of these, 252 (10.1%) showed deficient MMR status (dMMR; 134 women, 118 men; median age, 59 years), while 2249 (89.9%) showed proficient MMR status (pMMR; 1020 women, 1229 men; median age, 59 years). The 3-year DFS rates in the dMMR and pMMR groups were 75.6% and 74.4%, respectively. By multivariate analysis, patients with dMMR phenotype had significantly longer DFS than those with pMMR (adjusted hazard ratio, 0.73; 95% CI, 0.54-0.97; P = .03).

https://jamanetwork.com/journals/jamaon ... jw.twitter

This study may be closer to what you're looking for:

To the Editor Based on 2 oxaliplatin-based adjuvant trials, Sinicrope and colleagues1 recently reported an association between survival after recurrence (SAR) and both DNA mismatch repair (MMR) status and BRAF mutation in patients with stage III colon carcinomas (CC). Given that MMR status and BRAF mutation are strongly associated, they analyzed MMR and BRAF as a combined variable. Among dMMR CC, BRAF-mutated tumors had significantly poorer SAR compared with BRAF wild-type tumors (adjusted hazard ratio [HR], 2.70; 95% CI, 1.23-5.93; P = .01). Some caution is warranted when analyzing these results. When using SAR as an end point, patient treatment at recurrence has an effect on survival but these data were not available. Also, patient numbers were relatively small in the different groups resulting in low statistical power: 33 BRAF-mutated dMMR and 40 BRAF wild-type dMMR. Adjusted median SAR were incalculable owing to small sample size and lack of robustness of the model. In addition, results were adjusted on variables collected at CC diagnosis and not at relapse (ie, performance score), which is not relevant.


https://jamanetwork.com/journals/jamaon ... ct/2632108
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

Eleda
Posts: 153
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: RANDOM QUESTIONS

Postby Eleda » Sun Aug 19, 2018 11:11 am

Thanks RP KAREN AND MIKE, sorry I can't individually reply , I'm not that IT savy yet :shock: :shock:

Karen I was dealing with the usual mucus discharge, but unfortunately this was a total shock,,
I've never had a bowel movement urge,
But I will absolutely try the baby mucus trick because I never want to be caught on the hop like that again and don't REALLY want to b waring adults pull ups all the time ( so unsexy lol )

Mike as usual u always come up with the goods, THANKS so much for the link I've go e through it and is somewhat of a better understanding now

RP, because vi have no categoric mutation status I'm working blind but trying to eliminate the most severe by process of illimation ( but still confused) because I hav a poorly differentiated carcinoma but also have MMR intact!!!!!!!!!

I'm all over the liver and ( black pudding,, I'm Irish!! It's basically pigs blood)
Do u take a PSK SUPPLEMENT of eat the source,, I'd appreciate a recommendation

I take NKC ACTAVITORS ( life extension) In the hope my body will cooperate on this occasion
I only want to spend my money on worthy product and medically proven because there's so much tripe out there is no living on the breadline if u were to by all of them

Thanks again guys
Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th


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