Bad Day at Infusion......

Sundanceh said:

Melissa
That's an attention getter, especially for your first time with this chemo. Sounds like you are allergic to the Irinotecan. I never came close to that experience. My worst experience came from doing an Oxy infusion before I had my port in years ago, but nothing comparable to what you went through. I'm sorry and no wonder you were thinking all sorts of bad things.

One thing got my attention though - it looked like things went better when they adjusted the infusion rate downward. When they upped it again, you had the same reaction you did when you started.

If that is the case, your onc could adjust the appointments to reflect the additional time you would need to get infused at a lower rate. This might do the trick. It just take you longer than another person to get the same thing. Infusion rates are lowered all the time and would allow you to be able to at least try this one more time.

I would urge you to discuss this option with your onc and I would like you to at least consider the possibility of trying one more time with your dose lowered. It might make all the difference and allow you to be able to receive it vs not.

I understand your fear. When I first did the Oxy as I was saying. I marched into my doctor's office and told him "I'm done" and I'm ready to "go home" and I don't mean back to the house...we're not doing this anymore. We put my port in and it went better from there. They adjusted my infusions and they took up to 6-hours but at least I got through them.

I'm not going to let you give up just yet - you owe it to yourself to try one more time with the Rx lowered and have your spouse monitor while you sleep. I can't tell you the number of times I've had a nurse bungle something that could have harmed me.

One of the reasons I pay big attention to any machines and their settings - I memorize them so I will know if there is a change. It literally saved my life one night in the hospital but that's another story.

They messed up your appt and left you with a bad taste in your mouth and scared the literal daylights out of you. Hearing your cries, I immediately remembered how I felt during my ordeal, which was nowhere like yours as I said. But what I'm trying to say is I 'get' your fear about what happened - and about trying it again.

It will take guts, courage and fortitude to step and try it again. If you still had a bad reaction, then perhaps this particular chemo is not good for you. But, I want to see you try again and see if it goes any better. Will you at least think about it?

Since Atropine did not work for you either and gave you a bad reaction, perhaps there would be something else they could give you to relax or sleep during the infusion. I tried Atropine a few times, but it just made me groggy and I would 'nap' for a little while, but would be awake alot of the time. Alot of times I just closed my eyes and just thought.

If no other drugs are working, you can see if they can enroll you into a clinical trial. Also, are you a KRAS mutant? Have you been tested for this? If you are 'wild', you would be eligible for either Erbitux or Vecitibx, which could be used.

I think I remember you saying you had progression with 5fu. I wish I could remember if you took Folfox too?

I'm currently writing my chapter on "when is enough" and your post just screamed to me, because it speaks to me about what the feelings are when you feel like you have fired the last bullet in your gun. Your experience is poignant and is at the heart of the matter of some of the things I'm trying to say. So much so, that it hurts, because now, I'm not talking about myself or someone abstract - I'm talking about someone who I care about - and that's you, darlin.'

The Rock is full of $hit as you know and there are times like this when I feel my words just don't mean a thing. With all my heart it saddens me deeply to hear you crying out in pain.

Just please consider trying one more time with the lowered infusion rate and if that goes badly and you have to stop it, well you can't take what's making you sick.

Maybe the Erbitux or Vectibix? That could be the next step. Check into come trials to see if you would qualify for those.

I know you said GAMETIME, but I've always been of the opinion that this is not a game - it's for real and we're playing for keeps here.

Don't give in just yet - there will still be time for that at a later date, ok?

I'd send you over some courage, but you've already got plenty of that:)

Craig:(