Not allowed to do chemo / nervous

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Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Not allowed to do chemo / nervous

Postby Maelleous » Mon Jan 16, 2017 5:24 pm

I posted here last week. I had Cardiac Arrest on Dec 30th and it was speculated based on all available evidence it was from the chemo. The oncologist and cardiologists I have met with all believe it was from the chemo and the 5FU to be specific. They state that it would be too dangerous for me to get on any kind of chemo going forward (This is both my local cardiologist, and local Oncologist, plus the cleveland Clinic's same people). They are exploring possibly doing radiation to increase the odds of no reoccurrence but not sure if I can do that since I Have a j-pouch and ostomy currently and it causes lots of issues.

Really scared that I am basically throwing the dice and hoping for the best with no chemo... I am meeting with a cardio-oncologist but assuming he is going to say the same thing.

The positives the CC Onc stated was I had a non aggressive tumor type and there is no reason to believe they didn't get it all. He didn't like the amount of lymph nodes but believe it was localized. Told me to eat healthy, exercise and they will scan more frequently. I can't look at immunotherapies etc since I technically am NED right now.
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

stu
Posts: 1396
Joined: Sat Aug 17, 2013 5:46 pm

Re: Not allowed to do chemo / nervous

Postby stu » Tue Jan 17, 2017 11:35 am

Hi,
That is a really hard situation when one medicine has contraindications.
However you are going to be scanned more frequently so they can intervene quickly . To put that into context my mum has only used surgery since 2010 for a stage 4 diagnosis. She only ever has had 12 cycles of chemo and keeps very well .
The immunotherapy also looks promising. Hopefully you will need none of this and can focus on the diet and exercise.
I wish you the very best.
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 .

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Not allowed to do chemo / nervous

Postby Maia » Wed Jan 18, 2017 8:55 am

Maelleous wrote:The oncologist and cardiologists I have met with all believe it was from the chemo and the 5FU to be specific.


So, it was DPD deficiency, as suspected.

I can't look at immunotherapies etc since I technically am NED right now.

That's not accurate --tell your doctors there are immunotherapy trials specifically for those NED at a high risk of recurrence. I'm going to bump a thread for you, about it.

CoyoteVB
Posts: 5
Joined: Tue Nov 15, 2016 11:38 pm

Re: Not allowed to do chemo / nervous

Postby CoyoteVB » Wed Jan 18, 2017 11:04 pm

I will be following any updates you post. I also had cardio issues with Xeloda. I was lucky I did not go into cardiac arrest but I failed a stress test that resulted in a trip to the ER and an angiogram. My oncologist said she would need find an alternative to 5FU. I am scheduled for surgery in a few weeks and hoping to start clean-up chemo afterwards.
Brian 54
7/20/16 Positive FIT
9/27/16 Colonoscopy- dx rectal cancer 5cm, 15cm from AV
10/24/16 EUS T3n2mx
11/7/16 PET scan SUV 16.5. t3n2m0 Staged IIIb
11/14/16 tx neoadjuvant chemo/rad for 28 days, Xeloda

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Not allowed to do chemo / nervous

Postby Maelleous » Fri Jan 20, 2017 5:45 am

Coyote, what chemo did you get put on? I am starting to think I need to look somewhere other than Cleveland Clinic as they don't seem to be giving me any options, they said all chemo' have some from of FU in them, which I found a little hard to believe.
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

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

Re: Not allowed to do chemo / nervous

Postby BeansMama » Fri Jan 20, 2017 6:17 am

I believe there are posters on here that have done chemo without the 5-fu, there should be options for you. Seeking a second opinion may not be a bad thing.

Also you do not necessarily need to be in a clinical trial to get immunotherapy. I'm not, my oncologist got approval from my insurance company to give it to me on off label use. If your insurance won't cover it sometimes the drug company will. Just a thought to consider or possibly try.

I will wait for others to chime in that have experience with the chemo subject.

Keeping you in my prayers, I hope they find a solution for you.
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

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Not allowed to do chemo / nervous

Postby Maelleous » Fri Jan 20, 2017 8:10 am

Thanks Beans.

I have done a bunch of research on statistics for surgery with chemo and without and I am surprised that the odds of reoccurrence/survival isn't as huge of a difference as I would have expected so that eased my mind a little bit. Yes I would still rather do it and have the peace of mind I did everything possible. I'm scheduling a second opinion with Moffett to see what they say. The oncologist at Cleaveland Clinic told me there were no immonotherapies for NED patients... def need a second opinion.
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

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Not allowed to do chemo / nervous

Postby Maia » Fri Jan 20, 2017 8:33 am

Maellous, do you know your Micro.Satellite status --if you're stable (MSS) or in-stable (MSI)? That is very important, for treatment.

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Not allowed to do chemo / nervous

Postby Maelleous » Mon Jan 23, 2017 12:44 pm

I finally got some information on this, saw the cardio-oncologist today and they are near certain my cardiac arrest was from the 5-FU in chemo.

Rectal adenocarcinoma, stage IIIc,pT 3, pN2 B, p.M0. Microsatellite stable, K‐ras, NRAS, BRAF testing shows no mutation.

That is what his notes read. Please let me know what you think.
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

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Not allowed to do chemo / nervous

Postby Maia » Mon Jan 23, 2017 3:01 pm

As your onc said, you're not at the *higher* risk of recurrence (re:"the CC Onc stated was I had a non aggressive tumor type and there is no reason to believe they didn't get it all. He didn't like the amount of lymph nodes but believe it was localized. Told me to eat healthy, exercise and they will scan more frequently). But you are at risk of recurrence. I'm not one who likes chemotherapy but this is from this past weekend, at ASCO GI 2017 Prevalence and survival benefit of adjuvant chemotherapy in stage III colon cancer patients: Comparison of overall and age-stratified results by multivariable modeling and propensity score methodology in a population-based cohort: http://meetinglibrary.asco.org/content/174566-195
However, IF you would feel better doing some adjuvant treatment, the alternatives might be:
1. the NCCC guidelines call for a *reduction* of the 5-FU (the intravenous one, or the oral capecitabine); it could be a big reduction. Still, it's risky if you really have a DPD deficiency.
If your onc is a creative one, irinotecan + cetuximab (Erbitux) can be used, or irinotecan + bevazizumab (Avastin) (oxaliplatin requires 5-Fu to work, irinotecan, not so much). You have a good old discussion here, from people who were in your situation (but dealing with stage IV): viewtopic.php?t=33179

2. Look for a trial for Stage III patients, or NED patients, immunotherapy. There is that trial I mentioned for NED in other thread (https://clinicaltrials.gov/ct2/show/NCT02960594) and also a trial for Stage III patients at Duke, with a vaccine, to prevent recurrence: https://clinicaltrials.gov/ct2/show/NCT01890213 Four immunizations. It lists as inclusion criteria that the patients have to had chemo first but I would call anyway, to explain your situation --that criteria might be more flexible than what we imagine. Might be other trials out there, those are the two I can think of immediately : )

And if you op for following your onc advise, there are many off-labels and supplements that might help you, to prevent recurrence. You need to take a decision.

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Not allowed to do chemo / nervous

Postby Maelleous » Tue Jan 24, 2017 8:39 am

Thank you very much for the advice and input Maria. It has been extremely helpful, I emailed both places, not sure if I can qualify for either but will keep pushing forward.
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

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Not allowed to do chemo / nervous

Postby Maia » Tue Jan 24, 2017 8:51 am

Hang in there! Even if for any reason you follow 'just' your onc advice, just don't disappear and you will find here many ways to try and keep the cancer stem cells out of sight --with supplements, off-label meds, mainly things that you even could also run with your doctors, to see if they are right for you. : )

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Not allowed to do chemo / nervous

Postby Maelleous » Wed Jan 25, 2017 10:05 am

Thanks Maria. I spoke to several doctors about clinical trials, the ones I emailed forwarded my email to a few other people that have some. The only thing I would have to pay for is the flight. I am still waiting (should be a week or two) before I am able to get into Moffitt which is only 3 hours away for me, so want to see what they have before I fly to North Carolina or Michigan for a vaccine trial. I like the idea of vaccines but want to make sure I pick the right one.

They are still considering doing some kind of chemo but Cleveland Clinic won't start it until I am able to get an Electrical Path done on my heart. The earliest I could get an appt to have that done was March 1st which is so far away, they have me on a waiting list so hopefully that will be sooner, but nervous about how much time is elapsing between treatments. Been eating health and juicing and all the things you can do, but just worried, trying not to think about it too much and hoping for the best. Thank you for all of your advice.
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

wandalein
Posts: 93
Joined: Thu Nov 07, 2013 6:24 pm
Facebook Username: Wanda Leinweber

Re: Not allowed to do chemo / nervous

Postby wandalein » Wed Jan 25, 2017 5:56 pm

I still pop in once in awhile, this is timely. My husband was dx with rectal cancer March 2012 (T4, N1, M0) and had just the surgery and then in June, 2014 it was found in his liver (due to the size, one being 10cm and the number of tumours 4 we feel it was there from the beginning) He also only had surgery and declined chemo again. He has never had any type of chemotherapy whatsoever as his own choice. He has been NED since the liver surgery and we approaching 5 years since his initial surgery. He has bathroom issues but he is alive and well. To see him you would never know. I feel that if we can get to the 5th year since the liver surgery we are home free. 2 years to go.
Wife of Chris
March 2012 Stage 3 rectal cancer
May 2014 spread to liver
JUNE 2014 Liver resection 80% including gallbladder
June 2014 PET, CT, MRI
Oct. 2014 NED
Apr. 2015 NED
Jan. 2017 - still NED

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

Re: Not allowed to do chemo / nervous

Postby lpas » Thu Jan 26, 2017 12:36 pm

Very scary, Maelleous--so glad to hear you're OK.

If interested, I have a few names of good oncologic naturopaths that I'd be happy to pass along. The folks I've been working with are very data-driven and I have a lot of confidence in their expertise. The key on the naturopathic side, is to make your body as inhospitable as possible to cancer by controlling inflammation and growth factors (copper and iron are two good examples), strengthening your immune system, etc. There are actually some supplements that can be very helpful, but it's best to work with a professional who can order/monitor blood work and make sure you're achieving the intended effects. Feel free to PM me if interested.
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


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