Safe to wait on Chemotheropy?

Please feel free to read, share your thoughts, your stories and connect with others!
Maelleous
Posts: 127
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Safe to wait on Chemotheropy?

Postby Maelleous » Thu Nov 10, 2016 7:08 am

I had rectal surgery just under two weeks ago at the Cleveland Clinic. They have been really good but unfortunately the oncologist for them does not have any openings until December 12th. I originally did not get an Oncologist because they were optimistic they were going to get it all based on the MRI not showing it past the colon walls. They did end up finding it in 9 of the 38 lymph nodes. They state they believe it was localized but still recommend chemo (though thankfully no radiation).

My question is, should I try and find a local Oncologist to get in sooner, or stick with Cleveland Clinic? I am MUCH more comfortable with them, but also concerned about waiting another month or more to get chemo if any strange cells are floating around in there and many people have told me that chemo is standardized anyway. Also it pushes back when I can get my bag reversed by another month or two which I am not thrilled with.

They state I am recovering fast enough that I should be safe to start in 2-3 weeks. Any advise from others would be appreciated, thank you!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Safe to wait on Chemotheropy?

Postby lpas » Thu Nov 10, 2016 10:06 am

There is research suggesting that chemo is most effective when started within (I believe) 6 weeks of surgery. After that time period, the rate of recurrence starts to slowly increase. Unfortunately I don't have a link to the study but you should be able to Google and bring it up.

With the above in mind, I'd suggest finding a local oncologist so you can get started right away. You can always keep the appointment with Cleveland Clinic to get a second opinion or make the switch after your first treatment. You're correct that first-line CRC treatment is very standardized, but you should definitely talk to your doctor about the pros and cons of 5FU (administered via portable infusion pump) vs Xeloda (pills). They are essentially the same drug in two different forms.

Good luck!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

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

Re: Safe to wait on Chemotheropy?

Postby Lee » Thu Nov 10, 2016 10:56 am

Chemo usually begins 6-8 weeks following surgery. Once you see the Onc they should be able to get you on chemo real soon. If you feel comfortable with them, stick with them.

How far away are you from the clinic? If it's several hours, you might want to consider a local Onc.

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!

User avatar
Green Tea
Posts: 453
Joined: Mon Oct 24, 2016 10:48 am

Re: Safe to wait on Chemotheropy?

Postby Green Tea » Thu Nov 10, 2016 11:19 am

I think it would help if you could create a signature block to give people here the basic information on your situation.
A link to the signature creation page is here

http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

The kinds of things that you might want to put in your signature are listed in this post:

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

Right now, the basics on your situation seem to be:

M 35 yr
DX Rectal Cancer, October 2016
Stage IIIB/ Stage IIIC ?
No neoadjuvant chemo/radiation
Surgery Oct 2016
9/38 lymph nodes involved
Semi clean margins but close (1mm)
Waiting to start chemotherapy


Once you create your signature you should update it each time you have additional, relevant information to add. For example, when you know your exact stage and your exact TNM coding, this should be put in your signature. Also, if you have a copy of the pathology report from your surgery, you could add some of the relevant things found in that report.

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Safe to wait on Chemotheropy?

Postby BeansMama » Thu Nov 10, 2016 11:43 am

If you are 2 weeks out from surgery then Dec 12th still falls within the 6-8 week range that is recommended. Personally I would wait - you will be interacting with your oncologist quite a bit, being comfortable with them is important.

I would also prefer to stay with a major center. My original oncologist was with a smaller group and I recently switched to a major cancer center due to a cross country move. The quality of care I am receiving now is vastly superior to that of the smaller group.

One thing you can do is call and ask if they have a "cancelation list" if they do ask to be put on it. That way if someone cancels their appointment you may get it.

Due to surgical complications I waited longer than the recommended time-frame and did not have new Mets or more spread.

Just my opinion you should be fine waiting. I understand wanting to get treatment going ASAP, but you should take quality of care and the oncologists credentials into account as well, trying to find a new oncologist might take just as much time.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Safe to wait on Chemotheropy?

Postby jhocno197 » Thu Nov 10, 2016 12:45 pm

I thought it was that chemo was most effective starting within 12 weeks of surgery?

Regardless, 6-8 weeks is a standard wait time.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Safe to wait on Chemotheropy?

Postby lpas » Thu Nov 10, 2016 12:57 pm

Hi all,

FYI, I found a link to the piece I'd recalled reading. According to this particular study (others may certainly vary) it sounds like 4 weeks post-surgery is optimal if your body is sufficiently recovered to handle it. The quote that concerned me was this:
...among patients fit enough to start chemotherapy four weeks after surgery, treatments delayed until eight weeks showed a 12% higher five-year mortality, or 25% higher mortality when treatment started at 12 weeks.


While I absolutely agree that it's important to be comfortable with your oncologist, a 12% higher mortality rate is not insignificant to me. FYI, here's the link:

http://fightcolorectalcancer.org/research-treatment/chemo_delay_after_surgery_reduces_survival_rates/
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

User avatar
Green Tea
Posts: 453
Joined: Mon Oct 24, 2016 10:48 am

Re: Safe to wait on Chemotheropy?

Postby Green Tea » Thu Nov 10, 2016 1:44 pm

Maelleous wrote:I had rectal surgery just under two weeks ago at the Cleveland Clinic.... Any advise from others would be appreciated, thank you!

I would say that you should spend whatever time you have right now learning as much as you can about your diagnosis, especially whatever can be gleaned from the biopsies and pathology report and the radiologist's report of the MRI scans. All of this information should be evaluated as input to the decision as to what type of intervention you should have next.

In my case (which was a bit different from yours, but similar enough, in any event) my surgeon insisted that, after surgery, I first have 5 weeks of adjuvant chemo/radiation before going on to the standard adjuvant chemo protocol. (It was my surgeon, not the oncologist, who insisted on this). He did this because of what he saw when he did the operation. He said that the tissues surrounding the area where the tumor was located didn't look exactly normal and that he thought it would be better to add radiation to the protocol just in case this area and the surrounding areas were on the verge of becoming cancerous. You might keep this in mind when you meet with the oncologist. In other words, ask why you are not being considered for post-surgery adjuvant chemo/radiation. And when they finally tell you what regimen you will be on, ask them to explain why that one is the best one for you.

The danger, in my opinion, is that you might be routinely set up for what they call the "standard of care" for your particular stage. Keep in mind that you are 35 years old and the "standard of care" for rectal cancer therapy is designed for a population of patients averaging around 70 years of age, and you are an outlier with respect to that population. What you might need is a sort of customized therapy routine. For example, you might want to select a routine that does not involve the noxious oxaliplatin component, since that will likely give you some level of peripheral neuropathy for the rest of your life -- and presumably you have many good years still to go.

It's good that you are being treated at Cleveland Clinic, because it is among the top 10 cancer centers in the country. In fact, according to the latest report from U.S. News and World Report, it ranks 8th nationwide. I would stay with them for the duration of chemotherapy, if I were you.

User avatar
chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Safe to wait on Chemotheropy?

Postby chrissyrice » Thu Nov 10, 2016 7:25 pm

You are ok to wait till then ...

Stick with the best!
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

Maelleous
Posts: 127
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Safe to wait on Chemotheropy?

Postby Maelleous » Sun Nov 20, 2016 6:29 am

Thanks for the advice all. I talked to my surgeon and he referred me to an Oncologist local to me because he said it would be better if I did not wait. I also live 2 hours away from Cleveland Clinic (I'm in Florida, so this is their Weston hospital). I really liked the Oncologist, she seemed very thorough, however they did prescribe me the "standard" of care. Folfox: Fluorouracil, Leucovorin, and Oxaliplatin. I am supposed to start on November 30th if I can get the port installed before then. I have a consultation with a local surgeon on Monday (first one I could find that had an opening). With Thanksgiving I have a feeling it might get pushed back a week. I'm also having those constant bowel movement issues that are not getting any better I posted about in another thread, going to see if I can get in Cleveland Clinic again so that might push things back a bit. I don't want to wait past the 6 weeks if I can avoid it. (Nov 30th would be 5 weeks).

I kept my Dec 12th appt with Cleveland Clinic to get a second opinion. Does anyone know if they can change your treatment after you start if CC recommends something different?
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

behconsult
Posts: 264
Joined: Fri Jul 04, 2014 4:53 pm

Re: Safe to wait on Chemotheropy?

Postby behconsult » Tue Nov 22, 2016 6:22 pm

You are correct. The cocktail you are going to get is standard. The second opinion likely will not deviate, but they always good to get if your insurance covers. Peace of mind, or more of it, is priceless. Bob
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

User avatar
mmblz
Posts: 58
Joined: Sat Oct 10, 2015 3:03 pm

Re: Safe to wait on Chemotheropy?

Postby mmblz » Tue Nov 22, 2016 9:02 pm

Glad you are getting started. We read studies basically stating that every day/week counts. I started 3 weeks post surgery. Treatment plan won't really vary from place to place, but where you oncologist will matter more is if you encounter hiccups, e.g low WBC, and how they want to adjust for that.
40yo married 16 years. 4 kids 12, 10, 7, 5
2015-09-21 colonoscopy finds tumor in sigmoid, partial obstruction
2015-09-22 CT no mets, path G2 adenocarcinoma, CEA 1.2
2015-09-29 lap hemicolectomy at MSKCC
2015-10-06 pT3 N1a M0 stage IIIB
2015-10-22 folfox started - 12 rounds, last 4 no oxaliplatin
2016-10-27 clear CT !
2021-03-25 "cured"

Nik Colon

Re: Safe to wait on Chemotheropy?

Postby Nik Colon » Wed Nov 23, 2016 1:12 am

Green Tea wrote:
Maelleous wrote:I had rectal surgery just under two weeks ago at the Cleveland Clinic.... Any advise from others would be appreciated, thank you!


The danger, in my opinion, is that you might be routinely set up for what they call the "standard of care" for your particular stage. Keep in mind that you are 35 years old and the "standard of care" for rectal cancer therapy is designed for a population of patients averaging around 70 years of age, and you are an outlier with respect to that population. What you might need is a sort of customized therapy routine. For example, you might want to select a routine that does not involve the noxious oxaliplatin component, since that will likely give you some level of peripheral neuropathy for the rest of your life -- and presumably you have many good years still to go.

I can't say I agree with you. Pretty much everyone I have seen on here with Stage 3 or 4 cc and rc (even some stage 2) get Oxi, if not, Iri. (At least first line). Suggesting a second opinion is one thing, but to suggest not doing Oxi (if that is what is suggested), or making it sound like everyone gets permanent neuropathy is not correct. Yes, its not fun and people have gotten some degree of neuropathy, but not everyone. Side effects do not effect everyone the same. Ultimately it's up to the patient and their onc to decide what is best. We can give our experiences, but we also need to be careful how we word things and not suggest what chemo they should or should not recieve. As far as age, they are less likely to give harsher/more agressive chemo to older people, not more.

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Safe to wait on Chemotheropy?

Postby AppleTree » Mon Nov 28, 2016 2:08 am

My Onc ordered a blood test before starting post op chemo. My liver stats were through the roof and I ended up staying 8 days in the hospital, liver biopsy and finally 50 mg a day Prednisone. My liver was not intended shape to have chemo, so I missed the window of effectiveness. No post op chemo for me. So, yes, timing is important.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

User avatar
Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: Safe to wait on Chemotheropy?

Postby Marylandmaniac » Mon Nov 28, 2016 10:33 am

I have had 6 rounds of Folfox with very minor side effects. Cold sensitivity was one that would last a week or so and then fade. I am waiting for surgery and it is completely gone. The only thing now is when I wake up my hands feel a little numb but a I shake them out and they are fine. During the day I don't notice anything. Fingers crossed it stays that way.

I am suppose to start my next 6 rounds after surgery and I think they are looking at 6 weeks from surgery. However I may talk to my onc to see if we should start sooner. I had no idea that 4 weeks was optimal.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 7 guests