Cancer or Chemo? What's your experience?

Okay, my son started on folfiri combined with Avastin (Bevacizumab) and Irinotecan (Camptosar) a year ago.

First he developed a hole in the macula of one eye. This is a known side effect of irinotecan. I was surprised that his oncologist and his chemo nurse seemed to react to his vision concerns as though "this has nothing to do with us, you need to see an eye specialist". AFTER it was confirmed that he had actual damage to the macula of his retina - and he had done his research, they did say, "well, yes this can be a side effect of irinotecan". He stopped taking irinotecan when the eye damage was confirmed - no need to damage the other eye.

Now he has blood pressure spiking episodes. At first they were saying he was having panic attacks when his blood pressure would suddenly spike between 160-180's systolic and 100 diastolic. The oncologist prescribed Xanax. The blood pressure spiking events became more and more frequent. The spikes began happening after the slightest bit of activity - like just getting up to a standing position.

After some close observation, I could see that, yes, there was some panic involved. More apparent was that the blood pressure episodes were causing the panic attacks. I got involved and he now takes a blood pressure med that has helped immensely to make the blood pressure spiking events stay under 170 systolic. But the blood pressure spiking events continue and they affect his daily life.

Finally, after MUCH insistence on his part, his oncologist and chemo nurse let him stop taking Avastin. The blood pressure episodes have continued. Sooo, the same medical staff that said he was having panic attacks NOW tells him that it could take 6-8 weeks for the blood pressure issues caused by Avastin to recede.

Well, its been 8 weeks since he stopped Avastin and he still has the blood pressure episodes and has had to severely limit his movements to stop triggering episodes. He will see a cardiologist in early August - all on our part- no suggestion or referral from his oncologist, a recent EKG done in the ER showed some sort of abnormality and the ER doctor made the referral. We suspect the Avastin has done permanent damage to his cardio system as the Irinotecan did permanent damage to his eye.

Yes, I understand that the oncology world believes that the benefits of Avastin outweigh the side effects. Its a pretty poor quality of life when you have to limit movement to this extreme.

I am a little more than frustrated. He tried taking a total break from chemo to gain some strength for a trip and he didn't gain any strength. His break wasn't long, his oncologist talked him back into restarting chemo after only two weeks. Basically, he missed one chemo cycle.

Please tell me from your experiences, is the daily fatigue from his new heart issues, is it from folfiri or is it from the cancer? HIs cea is low, but it has been rising these past months, its still under 11. HIs lung mets have shown some growth.

We are plenty positive here and enjoying each day as much as is possible. We just need some help sorting out what is what of his symptoms.

Thanks for reading.