Chemo a no-brainer??

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pyh220
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Joined: Thu Sep 11, 2014 2:31 pm

Chemo a no-brainer??

Postby pyh220 » Thu Sep 18, 2014 9:38 am

Hi there - we meet with our oncologist for the first time today. I'm pretty sure we will discuss what chemo treatment plan is needed.

With 19/32 nodes affected at stage 3c, if we did NOT do chemo and tried alternative treatment, specifically, cannibis oil, is it almost a sure thing that the cancer would spread beyond her colon?

My mom is fragile and we've had an unfortunate story of a family friend who passed with ovarian cancer. They blamed the chemotherapy as it caused more complications that resulted in her passing.

Any suggestions, comments would be great. thanks.
57 yr old mom Stage 3c
19/32 lymph nodes
rectal cancer 3.1cm dx 7/1/2014
colon resect and temp bag 8/27/2014
Reversal takedown 5/6/2015
6 mm spot on liver 8/28/2015
5 more spots on liver, multiple mets on lungs and colon resection region 10/23/15

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chrissyrice
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Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Chemo a no-brainer??

Postby chrissyrice » Thu Sep 18, 2014 10:02 am

For this it really is a no-brainer IMO.

I was about the same age and same stage as your mom at time of surgery. Sure, I didn't want to do chemo either and at times thought the chemo would kill me.

BUTT, if you have a good Oncologist and his staff and stay on top of the side effects it really is possible.

Lots of people here even worked during chemo and exercised too. It's all possible and there is hope for a complete remission.

The cannabis oil helps with side effects of chemo... it is not a cure.

Hope all goes well today and they should be doing a test to see what your mom's tolerance for chemo. I forgot the name of it... so perhaps someone else can address this.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

pyh220
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Joined: Thu Sep 11, 2014 2:31 pm

Re: Chemo a no-brainer??

Postby pyh220 » Thu Sep 18, 2014 10:15 am

Thanks Chrissy. Your post is very encouraging for the family.
57 yr old mom Stage 3c
19/32 lymph nodes
rectal cancer 3.1cm dx 7/1/2014
colon resect and temp bag 8/27/2014
Reversal takedown 5/6/2015
6 mm spot on liver 8/28/2015
5 more spots on liver, multiple mets on lungs and colon resection region 10/23/15

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Maia
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Re: Chemo a no-brainer??

Postby Maia » Thu Sep 18, 2014 10:42 am

So, is she NED, at the moment? No visible cancer, in CT/PET scan?
Where are you located?
best to you

pyh220
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Joined: Thu Sep 11, 2014 2:31 pm

Re: Chemo a no-brainer??

Postby pyh220 » Thu Sep 18, 2014 10:45 am

I'm not sure if she is No Evidence of Disease. They removed the tumor, with clear margins (meaning the surgeon did not leave any of the tumor behind) however 19/32 nodes examined were positive, which means the cancer has "left home." Surgeon said we are stage 3.

Not sure if that is NED or not at this point...No PET/CT yet either. I wonder if the onc will order this today...
57 yr old mom Stage 3c
19/32 lymph nodes
rectal cancer 3.1cm dx 7/1/2014
colon resect and temp bag 8/27/2014
Reversal takedown 5/6/2015
6 mm spot on liver 8/28/2015
5 more spots on liver, multiple mets on lungs and colon resection region 10/23/15

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: Chemo a no-brainer??

Postby Maia » Thu Sep 18, 2014 11:19 am

I got your PM :) I've just asked about location because there are some immunotherapy trials (immunotherapy is no chemotherapy) for Stage III, but not in your area, at the moment.
Because of what you said, she's NED at the moment. So the chemotherapy would be adjuvant.
You say that your mom is fragile (and that she may be not well predisposed to chemo, right). The alternative "chemo or not chemo" should be re-think, in her case, then. Even if she's only 57 years old, she can demand to be treated with a less harsh regimen -as if she was elderly.
So, a regimen with only intravenous 5-FU and leucovorin only (without oxaliplatin or irinotecan; that is, no Folfox or Folfiri) would be possible and in the lines of the standard of care. Even better, after year 2000, that regimen (intravenous 5-FU and leucovorin) has been determined to be equivalent, regarding effectiveness, to capecitabine (=Xeloda, which is chemotherapy but in pill form). For her, it may feel like she's not doing chemotherapy. If the side effects are too much, the dose can be lowered.
In fact, she can also op to receive Folfox BUT ask her onc for a reduced dose of the oxaliplatin in the combo (that's the harsher component there). That is, she can have Folfox with the oxali at the 80% of the normal dose, or even %60.
In any of those cases, or other alternatives the oncologist should provide, the doses can be lowered until she feels comfortable with that. (That could be even better, in terms of results, that having chemotherapy at the present MTD (maximum tolerated doses): for a line of research, the idea of 'hit harder' is a bad idea -certain subset of cancer cells become resistant *because* of the too harsh chemotherapy. So who knows.)
And she always can stop, of course.

Check the NCI page, scroll down to "Chemotherapy regimens after 2000 -Capecitabine) http://www.cancer.gov/cancertopics/pdq/ ... ection_125
You may also find of interest for you the information in this thread (all the pages): viewtopic.php?f=1&t=39924

pyh220
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Joined: Thu Sep 11, 2014 2:31 pm

Re: Chemo a no-brainer??

Postby pyh220 » Thu Sep 18, 2014 11:36 am

Thanks Maia. This is really helpful. I will discuss this with the oncologist today.

Did you go through chemotherapy? What is your dx/current situation?

Thanks,
Peter
57 yr old mom Stage 3c
19/32 lymph nodes
rectal cancer 3.1cm dx 7/1/2014
colon resect and temp bag 8/27/2014
Reversal takedown 5/6/2015
6 mm spot on liver 8/28/2015
5 more spots on liver, multiple mets on lungs and colon resection region 10/23/15

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: Chemo a no-brainer??

Postby Maia » Thu Sep 18, 2014 12:07 pm

Not me, Peter. I'm in this board because of a friend -she had a colon resection in 2006 (Stage I); a liver resection in 2009; a diagnosis of unresectable lung mets in 2012. She always refused harsh chemotherapy so only in 2012 she accepted to have something -and it was Xeloda, chemo in a pill form (in her case, that was only palliative... she already had unresectable metastatic CRC; not your mom's case, remember). She had later a brain met, surgery, and that's why she acepted IV chemotherapy for first time -and it was Folfiri (with irinotecan at only %60). Had that with breaks until it failed and started to get Folfox (with oxaliplatin at %60). New brain mets; she had whole brain radiation; didn't work; she had GammaKnife. Her last brain MRI scan shows that the GammaKnife worked, so brain is stable. And last time they checked the lungs, things were under control too.
All this long story to say that lowered doses of the chemo regimens can be done, and they are effective (remember, in the case of my friend, as palliative, only) to have the work done.
But as I said in my PM... only your mom's onc can really address her situation. Just know, from what you'll hear in this board, that there is more that the alternative 'chemo - no chemo'.

Others who were Stage III will chime in, I'm sure... just keep reading and take it easy --too much information to absorb : )

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mstults
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Re: Chemo a no-brainer??

Postby mstults » Thu Sep 18, 2014 12:31 pm

I'm not stage 3 but would like to chime in. It seems that the correlation between side effects and a fragile patient is weak at best. Some of the strongest people have the worse side effects and vice versa. I feel you and by extension your mother need to approach it with an open mind. Above all make sure you have an oncologist you trust and can talk to. Let him work out the details. That's what he does. Be involved but don't micromanage. Side effects are much easier controlled now than just a few years ago. It seems that fatigue is the hardest to overcome. The question of your topic, whether to do chemo or not really is a no brainier. She is in a position to be completely cured for long term. Many are Ned for a few months or years only to have it return unexpectedly. I would be begging them to hit it with everything possible. I can say that with certainty. Not just an off the cuff stupid remark. I know because that is what I did. Your mom is in a much better condition to be cured. If you search a little here you can find many examples of people in her condition that took maybe some chemo and backed off only to have it return. Play the chemo by ear with the oncologist. My Dr cut the Oxaliplatin to 80% after my 2nd treatment and I took 17 folfox rounds. I have been on various chemos for 2.5 years and have not vomited 1 time. Not to say she won't be deathly sick. I pray she isn't but try to have an open mind. I realize that is a big task. Make sure she gets scans at least every 6 months. I'd press for every 3 months. Let us know how she's doing.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

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John72
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Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Chemo a no-brainer??

Postby John72 » Thu Sep 18, 2014 12:59 pm

Hi, so...I have similar node involvement.

Its possible that surgery got everything...when I had been looking back through old stats years before an effective chemo treatment was developed, I believe that the 5 year survival rate was around 15-25% for stage IIIc rectal cancer. If I remember correctly anyway. Meaning that some people are cured through surgery alone.

In that time, not only has an effective chemo treatment developed, but surgical methods have improved as well.

The thing is...that many nodes involved are a poor prognosticator. And thats because the cancer spreading to so many nodes indicates that the cancer is on the verge of spreading elsewhere. And here is where the adjuvant chemo comes in and really is effective. If those cancer seeds are just floating around...and they haven't yet implanted themselves and multiplied anywhere else...the current chemo treatment for stage IIIc rectal cancer is very effective at killing off those floating cancer cells.

Theres been a few other rectal cancer patients posting here that also have had significant node involvement...myself, and I believe 2 others. All three of us went through similiar chemo treatments. Theres others who were colon cancer patients...who also had significant node involvement..some had recurrences, some did not. I do believe though that many of those with heavy node involvement who had recurrences, chemo kept or continues to keep some of them alive quite a long time, with a reasonable quality of life, many of those going on 7 or 8 years plus.

My oncologist didn't really give me a choice, and I don't think at stage 3c there really is much of a choice. I don't think its guaranteed to spread if she doesn't undergo chemotherapy, but the risks of not doing so, IMO, far outweigh the risk of undergoing chemo.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: Chemo a no-brainer??

Postby canadiandaughter » Thu Sep 18, 2014 8:01 pm

My dad just had his 3rd round of chemo. Only side effects so far have been diarrhea and he is getting tired. More tired with this last shot, although he has not been a good patient as far as taking it easy, so maybe his body will dictate that for him now. He still eats normal and has not lost weight at all. Like others mentioned, everyone is different. His doctor has him on quite the regiment of anti nausea meds that he takes for 3 days with chemo and has a pill to take if he needs it but has really not needed much. He is also diabetic, which has been a bit of a struggle but seems to be settling now. Best wishes to your mom with whatever course of action they take!!
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

pyh220
Posts: 19
Joined: Thu Sep 11, 2014 2:31 pm

Re: Chemo a no-brainer??

Postby pyh220 » Fri Sep 19, 2014 9:06 am

Thank you for all your replies. We met with our oncologist yesterday who suggested 5FU port and Oxy for 6 months. With surgery alone, she said 60-70% chance that the cancer would return. She said if we do chemotherapy, the 50-70% drops by 15%. We have decided to do the chemo.

After researching forums, I prefer Xeloda for my mom (I know there is increased hand/foot side effect) to minimize the hospital visits and the port/pump. If Xeloda doesn't work out, then we can go to the port.

One of our concerns is that the surgeon wants to do the temp ileostomy reversal after chemo. My mother was NOT having that. Can anyone chime in as to the pros/cons of doing the reversal before chemo? We understand obviously that chemo will be delayed by 2-3 weeks and that the resection needs to be fully healed, but if all is healed, why not do it before chemo? Is it not as easy as we think?

Again, appreciate all your comments and tips.

Peter
57 yr old mom Stage 3c
19/32 lymph nodes
rectal cancer 3.1cm dx 7/1/2014
colon resect and temp bag 8/27/2014
Reversal takedown 5/6/2015
6 mm spot on liver 8/28/2015
5 more spots on liver, multiple mets on lungs and colon resection region 10/23/15

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raym
Posts: 1263
Joined: Sat Apr 16, 2011 11:08 am
Location: South Central PA

Re: Chemo a no-brainer??

Postby raym » Fri Sep 19, 2014 9:25 am

If getting Oxaliplatin I would highly recommend a port. I've never had Oxaliplatin via IV but based on the experience of others, it can be painful and cause localized damage to the veins. Port placement is a pretty easy procedure. You can then discuss if you go 5FU or Xeloda. Xeloda was convenient, but rigid dosing schedule (about 20 min after a mean) must be followed. Some have had difficulties getting Xeloda approved per insurance so make sure that is worked out. The manufacturer of Xeloda (Genetech?) does offer a prescription discount card.
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Chemo a no-brainer??

Postby skypup » Fri Sep 19, 2014 9:30 am

Chemo leads to all sorts of GI problems, diarrhea most often. I didn't have an ostomy, but can only imagine it would have been easier than the long nights running to the bathroom. Btw, 5-FU was easier for me than Xeloda. With the pump I felt bad for 4 or 5 days while on FOLFOX; with Xeloda I felt crappy all the time. Just my experience...

pyh220
Posts: 19
Joined: Thu Sep 11, 2014 2:31 pm

Re: Chemo a no-brainer??

Postby pyh220 » Mon Sep 22, 2014 1:06 pm

Hey guys, so mom will undergo 6 months of 5FU + Oxy. Oxy every 3 weeks.

Interesting part:

My onco said we would do the 5FU port/pump + Oxy for 6 months. She did not bring up Xeloda as an option. I had to bring it up. I wonder if this reinforces the idea that there is no monetary benefit to the hospital/onco if Xeloda is the route selected?? The onco did say that there are more side effects with Xeloda pill, but the efficacy of Xeloda vs. the 5FU pump were the same.

We are going to go with Xeloda, so we can go to the hospital every 3 weeks instead of every 2 weeks. Also we don't have to have a port. The only concerns I have are the increased side effects risk as well as the pain associated with doing an IV for Oxy every 3 weeks instead of doing it through the port.

Any comments, tips, suggestions would be greatly appreciated!
57 yr old mom Stage 3c
19/32 lymph nodes
rectal cancer 3.1cm dx 7/1/2014
colon resect and temp bag 8/27/2014
Reversal takedown 5/6/2015
6 mm spot on liver 8/28/2015
5 more spots on liver, multiple mets on lungs and colon resection region 10/23/15


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