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PCI for my sister--sharing & knowledge appreciated


dani hobbs

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Hi, I've been watching this board for 2 months, every since my sister was dx'd with sclc, extensive stage, mets. to liver. She is about to begin her third round of chemo (carboplatin & etoposide). So far, she is feeling good--her main side effects have been extreme fatigue, mouth sores & stomach upset. Her oncologist said that he believes she's doing well enough to have PCI soon. I've researched PCI and at first it seemed like the best thing to do but I would like to get feedback from people who have experienced it. Specifically my sister wanted to know about side effects, how people feel during and after the treatment, the average number of treatments, and most importantly, how often are the treatments---weekly, daily or what? She & her husband were just about to retire & want to travel, if she possibly can. She wonders if she wants to be tied down to a treatment that she is unsure of--especially if there are any cognitive & motor defects. She's wondering if it's worth it. I'm her main line to info. on the Internet, as it's just too overwhelming for her husband & children to research. Any information would be very much appreciated.

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dani hobbs, I had PCI and am glad I did. I had 15 rounds, one round per day. It was a piece of cake as far as the actual treatments. I did experience a little brain swelling the first day which gave me one heck of a headache but the Radiation Onc. prescribed some medicine that stopped the headaches. I will not lie to you, the fatigue I experienced was pretty bad, worse than with the chemo but like I said, I think it was definitely worth it. Other than the fatigue I have not noticed any other side effects. Sometimes I forget things like what did I come into this room for or my wife will ask me to bring something upstairs and I just completely forget in 5 minutes (No really I do forget, ha,ha) Heck I had those types of lapses prior to Chemo and PCI, I really think I just notice them more now since it is supposed to be a side effect. I am an Underwriter by day which is very detailed oriented and requires intense concentration and I have not noticed any effect on my job.

It is great that your sis is doing so well that she can have PCI. My prayers are with her and you.

David C

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I wanted to drop you a note to give you my experience with pci, so maybe you could ask questions that we didn't ask before this treatment.

My father was diagnosed with sclc in October of 1999 (at age 59). In April of 2000, he went into remission, and he also had pci done. I don't know the dosages or how often he went. He had some short term memory loss, but not too terrible. Since July of 2003, he has went terribly down hill. His neurological capabilities have steadily declined. Currently, he can't walk, and he can barely talk. I think he comprehends what we are saying to him, but he has difficulty replying to us. His quality of life is really low. He lays in bed or we move him to his recliner, but this is all of the movement that he gets. He is unable to help us move him, so we have to do all of the work for him. I have tried to research the long-term effects of pci, but I haven't found anything that goes much past 3.5 years, which is past where we are. He is 63 years old now, and we are fighting hard to keep him home and out of a nursing home.

I feel terrible telling such a sad story, but I can't help but feel as if we might have made a different decision if we would have known then what we know now. I will include your sister in my prayers. Good luck.

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Rikki you said your Dad was in remission, I also have to assume having had PCI that he had small cell lung cancer. Did you know that blood clots are a frequent problem with lung cancer? Has your Dad had a CT to check if he threw a clot and had a stroke? after these symptoms began? Many times people have to be on Levonox shots twice a day if they have problems throwing blood clots ( for some reason coumadin does not help) Many people find out they have lung cancer because they have had a stroke. Donna G

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That is a good point. We thought the same idea, but after numerous tests, the doctors said there has been no stroke. They refer to his condition as gray matter disease. It is supposed to be progressive, and directly related to the pci. Again, I don't know the specifics of his dosage. He is in remission since April 2000.

I know when they diagnosed the cancer in October 1999, they gave him 6 or 7 weeks to live. His doctor's said they would help him fight the cancer if that's what he wanted, but basically, he needed a miracle to beat this cancer.

I just can't help but wonder where his quality of life would be if we didn't have the pci done. It sounds to me, though, that his situation is much different than others. The side effects of our experience are very different from the others that I have been reading.

We just try to keep him comfortable and happy. I am thankful that he is not in severe pain and still can give me a smile when I kiss him hello and goodnight.

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Dear Dani,

I wish to give you what I call a couple of stories of HOPE! I facililate a Lung Cancer Support Group, and I have a few people that have had PCI and are doing VERY VERY WELL! One will be a 5 year survivor in May of this year. She had the SAME kind of SCLC as your sister and it had spread to her liver. She is STILL cancer free and IS retired and runs circles around the younger group. :wink: I have another lady who also had PCI and she is back to teaching school and will be a 4 year survivor of SCLC. I also know a lady that is a 15 year SCLC survivor and she tooo had PCI several years after her dx.is because they didn't offer the PCI when she was dx.d. She too is doing VERY WELL.

So please share these stories of fact and hope with your sister. I have not ever heard anyone say they were sorry they did PCI. They did 15 sessions of radiation treatments a day, Monday thru Friday, 5 minutes a day. Some had a little fatigue, they all had hairloss, and some had short term memory loss but are all back to normal now.

Good Luck to you and your sister. Wish her well, and tell her to NOT give up the fight. THIS CAN BE BEAT!!!

KEEP A POSITIVE ATTITUDE!!!

Hugs,

Connie

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Dani,

Here's a PS to my message.

All the people I shared with you that had PCI had what they call LOW DOSE Radiation Treatments.

That is why they didn't have as many side effects as some that have WBR do. I am NOT RULING OUT SIDE EFFECTS. Just that they didn't have many and they said they would do it all over again.

Hugs,

connie

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