Not allowed to do chemo / nervous

[Maelleous]

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.

[stu]

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

[Maia]

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]

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.

[Maelleous]

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.

[BeansMama]

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.

[Maelleous]

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.

[Maia]

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

[Maelleous]

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.

[Maia]

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]

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.

[Maia]

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]

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.

[wandalein]

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.

[lpas]

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.