PCI question

[Guest randa'sdaughter]

My mother is going into her 3rd week of radiation treatment. (She has 4 more to go.) During our first consultation with her doctor, he mentioned PCI. He said he wouldn't bring it up again until closer to the end of her chest radiation. I asked her oncologist about it and she highly suggested that my mother do it. I have read some info on some of the boards, but wanted to ask firsthand who had had this and what kind of side effects had you had. My grandmother had breast cancer in the late 70's and then had brain mets. She had cobalt treatments at that time. My mother can only remember the effects that had on her and she doesn't want to go through all of that. I've told my mother that they have definitely come a long way with radiation treatments and not to compare herself to what was done 20+ years ago.

What was your experience with PCI? How long did you take it? What kind of effects did you have?

Thanks so much. You guys are so very special!

[Remembering Dave]

Paula,

My husband, Dave, had PCI. He had six chemo treatments 3 weeks apart each, concurrently with chest radiation, I think 30 days of that. After successfully finishing both, a CT scan of his head was ordered to make sure there were no brain mets. There weren't, so he "graduated" to PCI. It seems to us that if you get to PCI you've done pretty well, they do it if the initial treatments appear to be successful. It is done because chemo can't always get through the tiny vessels in the lining of your brain but cancer cells can, so it is to kill any cancer cells that might have sneaked in there.

He had some side effects but nothing awful. After just the first day he had an excruiating headache. Turns out he had brain swelling from just one treatment. The radiologist put him on a steroid, Decadron, to help with the swelling. The headaches did get better. He had lost his hair from chemo and it hadn't had a chance to start growing back so he stayed bald (he had PCI in September and since Christmas he's started getting some peach fuzz).

I will tell you that he had and still has some short term memory loss, gets a little impatient and anxious, tires very easily still. But again, nothing awful, nothing that is stopping his life from going on. And we decided that no matter the side effects, it was worth it to stop any brain mets and LIVE.

Hopefully he'll read this and add his two cents worth or correct any detail I might have gotten wrong.

I'd say if your Mom is doing well and is fairly healthy otherwise I'd encourage it. Things have improved since the 1970's!

God Bless,

Karen C.

[MO_Sugar]

I had Chemo (5 rounds, 3 weeks apart), radiation treatments (31, 5days a week for 6 weeks) and when that was all done I did 15 PCI treatments (5 days a week for 3 weeks). As for side effects of the PCI, I lost my hair, have very short term memory loss (forget what I walked in the other room for), I find myself thinking more about what I am saying (not a bad thing, lol), I still tire very easily and I have a slight vision problem which may or may not get better with time.

All in all I would say GO FOR IT if it is offered. My Dr. told me they only do it for folks who have a "better than average" chance of survival.

God Bless,

MO

[OhioKat]

This might not seem important but you might want to warn her that with the PCI any hair she has left on her head after chemo will likely fall out. I'm not really positive on what other side effects that I had after my PCI last year, because I think I just figured it was just my goofy self or something although I've started to try and pay a bit more attention to anyt neurological signs I might have been overlooking, but so far it hasn't been anything that makes me wish I hadn't had it.

[Rachel]

Paula,

I was dx'd May 24 2003 limited sclc to mediastinum & r lung. Did chemo for 4 rounds cisplatin & etopiside then 15 days of radiation twice a day. I will have CT scan & Brain MRI this Friday. If all is clean I will proceed to PCI. I also have been very confused & apprehensive about this procedure but have decieded to do whatever to be well again. I also turned to this forum board for advice & the comments I received along with other research have helped me to make up my mind. I will be praying for you Mum.

Rachel

[Guest randa'sdaughter]

Thanks so much for your insight. I really appreciate it.

She has had 13 of 38 chest treatments. And her radiologist said he'd discuss PCI with her when they were about halfway or so.

Good luck to you all and God bless.

[Remembering Dave]

Hi Paula. Not sure how much dosage of radiation the cobalt gave your mom but the PCI is a low dosage from what I was told due to it is soley a preventative measure. I guess the dosage would be higher if you had mets to the brain. I had PCI, I did not hesitate to get it. I had a little brain swelling which was controlled immediately by medication. Other than that I have just had some fatigue problems and very minor problems with forgetting small things, like I was reading to my daughter and there was a picture of a butterfly and for the life of me I could not remember what it was, you know it was just at the tip of my tongue but could not get it. I have a pretty analytical day job and it has not effected me there. I would say go for it, it only increases your odds of survival.

David C