The Colon Club

The doctors till aren't sure for sure it was the chemo, but on December 30th I had sudden cardiac arrest. I had my pump taken off and complained of heartburn/chest pain. They sent me for an EKG and Echo and let me go home (they never should have) Thank GOD that my wife was sitting next to me when I collapsed. She did CPR and I was on ice for 3 days. I am typing this from the hospital. I am/was fairly fit, but did have a very low heart rate they never could find problem with, done several stress tests etc. (40s during day, high 30s at night)

I'm waiting to hear back from the Cardio doc here today hopefully. What a crazy, lucky, but horrible ride this has been. The ONLY positive from this is that my constant bowel movement issue I posted about (I Have a temp loop ileo) has calmed down finally.

I'm extremely nervous about continuing on Chemo now even though I know my odds are very bad if I don't. I am considering staying in the hospital during treatments for the worst days. I am likely getting a defibrillator or LifeVest as well, so that will at least manage some of the risk.

Thought I would share my story. I've also heard promising things about the immunotherpies recently approved... anyone have any opinions on that?

Hi Maelleous,
Sorry to hear about your cardiac arrest. How awful, first you find out you have cancer, and then the treatment may have given you heart problems.

On a hunch, I decided to try searching if cardiac problems could be related to the oxaliplatin in FOLFOX. After a quick search, I came across this link, http://www.ehealthme.com/ds/oxaliplatin/cardiotoxicity/. Seems like there could be a correlation.

So maybe there are other treatment options for you that would exclude oxaliplatin, like Xeloda alone, or FOLFIRI, Irinotecan with fluorouracil (5FU).
I'll bet your oncologist will have ideas also.

Hope you start feeling better soon,
peanut

Maelleous wrote:
I'm extremely nervous about continuing on Chemo now even though I know my odds are very bad if I don't. I am considering staying in the hospital during treatments for the worst days. I am likely getting a defibrillator or LifeVest as well, so that will at least manage some of the risk.

I am not surprised! This sounds like a situation where swing-bed care will be a good solution.

Maellous, so sorry.

You might want to be sure your doctors test you (or find out if they tested prior to chemo) for DPD (dihydropyrimidine dehydrogenase) deficiency. That is an enzyme responsible for the metabolism of 80%-90% of the administered dose of 5-fluorouracil (5-FU); if there is a problem with it, there is increased risk of toxicity when receiving 5-fluorouracil and capecitabine chemotherapy. 5-FU is the backbone of the combination: Folfox = 5FU + oxaliplatin. I remember you had a difficult-to-manage diarrhea, which is (in that grade) a telling sign of that deficiency. The test is not invasive and might give you and your doctors some answers. As peanut said, it might be also the oxaliplatin in Folfox.
I'm glad you're considering immunotherapy --it's false that you need to be stage IV of had run out of standard of care to try it; and not all it's "experimental", with the possibility of terrible, unknown side effects. You need to get well informed, that's true. Try to find out if your tumour is MSS (microsattelite stable) or MSI ((microsattelite instable). That is crucial information, these days, because determine treatment.

I hope you feel better soon!

Hi, I did not have a cardiac arrest but did have a cardic symptons on Xeloda and 5-FU. 5-FU has known cardiotoxicity for 1% of the population. I am in that unlucky 1 %. Instead of 5FU I was put on IROX: ironitecan and oxaliplatin with avastin which I did respond to. I would not take 5-FU again. If you search the forum there are others with 5FU cardiotoxicity.


52 yrs old
3/ 2015 Colonscopy rectal Tumor found
4/2015 6 wks radiation
4/2015 xeloda failed cardiac symptoms
4/2015 IV 5FU failed cardiac symptoms
8/2015 APR post surgery CEA 8.7
9/2015 PET scan multipe mets to liver and lung
9/2015 lung biopsy lung met
9/2015 bolus 5FU failed cardiac symptoms
11/2015 - 4/2016 IROX
4/2016 NED on scans CEA 2.6
12/2016 CT liver met, CEA 10

During my second treatment after liver/colon resection (my 7th overall treatment) I started to feel what I can only describe as "weird" and a heavy metallic taste in my mouth. I asked my sister to get the nurse who was 10 steps away and I was in cardiac arrest by the time they returned 20 seconds later. I was told later I had no pulse during the episode and I was shocked and had two shots epinephrine. When I became concious 45 minutes later I was shaking uncontrollably from the epi and I was transported via ambulance to the cardiac unit at Columbia Presbyterian. I remained there for 2 days with heart monitors attached but had no subsequent episodes and all tests after came back negative for heart issues or any damage from that event.

My doctor withheld the Oxali and folic acid for all my remaining treatments. I finished my treatments of 5fu and FUDR via my hepatic arterial infusion pump.

My doctor told me later incidents of allergic reactions to Oxali do happen (although rate) and it's likely from sensitization to the platinum after a number of treatments. I worried for a long time that I wasn't getting the full treatment I needed but my doctor assured me that the first treatments of Oxali were the most important.

Best wishes,
Amy

This is a previous thread from April 17 2014, about this issue.

viewtopic.php?f=1&t=46322&p=338374#p338374

Thank you for the responses. My cardiologist is still searching for answers and I am switching chemo doctors as she has been very unhelpful since this has happened. Going to visit some of the bigger centers, Moffett, Florida Cancer Institute, and go back to Cleveland clinic and get an opinion from all of them, then have my local onc follow the plan I think is best. Still a little nervous that my cardio doc says absolutely no chemo until we figure this out, so only 3 treatments in, it could be several weeks before I restart. Hopefully when they removed the tumor with clean margins and took so many lymph nodes (38) that they got it all.

I can't imagine it is anything other than the chemo being young and healthy (minus the cancer of course.) Once I have more info I will post more, as I know this stuff is beneficial to others who may have issues.

How scary you had a cardiac arrest!*hugs* I'm so glad you're ok and hope your cardiologist will be able to find out what caused it! It sounds like a good idea to have you monitored while doing chemo.*hugs*

How scary! I am glad you are ok. I did not have cardiac arrest but did end up in the hospital for a few days after my second infusion of Folfox with pericarditis. I was having severe chest pains and told the infusion nurse at disconnect. She contacted my onc and then told me to head straight to the ER.

After that I did have some chest pain with subsequent infusions once the treatment for the pericarditis was completed.

I then went on folfiri with no problems. Once the folfiri failed and they put me on folfirinox the chest pains returned after a few infusions. By that time we knew that chemo treatment failed too so bringing it up to my oncologist was a moot point as I was switched to immunotherapy.

I will add you to my prayer list, praying you do not have this issue again.

So sorry you had to go through that! Your wife is certainly your guardian angel - how awesome that she had the skills to save your life. I don't have anything concrete to add, just wanted to send hugs and prayers for figuring out a better game plan. Best of luck, Laurie

Maelleous wrote:Thank you for the responses. My cardiologist is still searching for answers and I am switching chemo doctors as she has been very unhelpful since this has happened. Going to visit some of the bigger centers, Moffett, Florida Cancer Institute, and go back to Cleveland clinic and get an opinion from all of them, then have my local onc follow the plan I think is best. Still a little nervous that my cardio doc says absolutely no chemo until we figure this out, so only 3 treatments in, it could be several weeks before I restart. Hopefully when they removed the tumor with clean margins and took so many lymph nodes (38) that they got it all.

I can't imagine it is anything other than the chemo being young and healthy (minus the cancer of course.) Once I have more info I will post more, as I know this stuff is beneficial to others who may have issues.

Sorry you went through all of that and I'm glad you are doing better!

Just wanted to chime in here real quick as your situation sounds a little similar to mine and maybe hearing my story might help with yours?

For my first chemo treatment I had the pump going for FOLFOX and after the first 48 hours I went back to get disconnected and I was about to have a heart attack. My cancer center called 911 and I was checked into the hospital. They disconncted me and gave me nitroglycerin pills to open up the arteries in my heart and that immediately started to help with the heart-attack like chest pain and other symptoms I was having. I had CT scans of my chest and they could not find anything wrong and no damage to my heart. I started following up with a cardiologist after that just to monitor things and everything was always fine.

For round 2 my Oncologist lowered my dosages of OXI and the 5FU on the pump. I still had the same symptoms, but not as bad as to send me to the ER again. I did have memory black outs, chest pain, no appetite, etc and had to take the nitroglycerin pills a couple of times that they had prescribed to me at that point due to the severe chest pain and abnormal beating of my heart. It was all very scary to go through, and aside from the physical pain it was hurtful to hear other Dr's (especially the ER Dr!) tell me that I was just having "anxiety attacks" due to having cancer and beginning chemo, etc. Uh, no...this definitely was not anxiety attacks and I wasn't faking the pain. I hate it when Dr's just write you off and assume that you are an idiot or something.

Anyway, for round 3 my Oncologist switched me to XELODA (pill form of FOLFOX, but OXI was still administered via pump). The XELODA was a world of difference and I was able to get through 8 rounds of chemo with it. It wasn't perfect, but i didn't have to use the nitroglycerin pills as often as the chest pain/heart rate was more manageable and I didn't have memory black outs anymore.

We are still not sure what my reaction was all about (I have no other medical issues aside from cancer), but we are thinking that it could be some type of DPD deficiency or that I may have inherited a heart defect from my family (nitral-valve prolapse) that we are just not aware of yet...who knows.

I wish you the best in your journey and always advocate for yourself! Don't let anyone make you doubt your symptoms when you are describing them to make them sound not as bad!