Ray’s Blog

The good news is that my oncologist knows what happened to me. The bad news is what it is. It’s what we had suspected, a rare adverse reaction to 5-FU called cardiotoxicity. Although that’s somewhat misleading. Cardiotoxicity actually means heart muscle damage which we don’t believe has occurred in my case but is possible. In fact, you can drop dead from cardiac arrest when given 5-FU. Now we know I am at risk, meaning I can have an adverse reaction again, if I follow the standard chemotherapy treatment, in any form including a heart attack. My dilemma is that I need the chemo to have the best chance for surviving cancer but the treatment could kill me. So we will have to make a choice - risk now for increased survival later or play it safe now and risk having cancer later (later meaning within the next five years).

In order to make the most informed decision possible, I need to know what if anything I’ve already done to my heart and what could the effects be if I continue with 5-FU. I’ve already heard and read about monitoring heart activity before during and after chemo because the risks are well-known for many chemo drugs including 5-FU. I’m not sure why I wasn’t put through any testing or even warned that this could happen. The incidence is about 1% which is a small percentage but large considering the absolute numbers of chemo patients. Even so, very little is known because of the lack of standard diagnostics and no major studies have been done, only case studies of individuals and data collection of adverse reactions after the fact. What all this boils down to is that there is no clear path of action. If I continue, it will be trial and error and I will need to be hospitalized as a precaution for observation.

I’m going to look into seeing a cardiologist tomorrow morning as I have a feeling any findings there will help in my decision to continue chemo or not. Again, I’ve lost a lot of time here not having a definite diagnosis for a week but if the chemo has to be postponed so I can make the right decision so be it. I knew chemotherapy wasn’t going to be easy, I just didn’t know it was going to be this hard.

Related posts:

1. Moving Right Along
2. Another Chemo Setback Part II
3. Feeling Good
4. First Complete Chemo
5. Big trip to NYC