izzyleung Posted March 9, 2012 Share Posted March 9, 2012 Anyone went through PCI experienced any side affect of cognitive function or memory impairment? My dad was recently dx with SCLC and doc recommended PCI as a precaution. But he fears side effects. Can anyone share their experiences? Thanks!!! Quote Link to comment Share on other sites More sharing options...
Joppette Posted March 9, 2012 Share Posted March 9, 2012 Hi there! Well, I googled PCI because I never heard of it and all I couldn't find a reference to this. Maybe if you gave a bit more detail, we might be able to help! Have a good day. MI Judy Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 9, 2012 Share Posted March 9, 2012 Same here, what do the letters stand for? It does sound vaguely familiar. You might want to post it at cancergrace.com that has doctors who respond to your questions. Many of us here are dual members and use the same screen names. Judy in KW Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted March 9, 2012 Share Posted March 9, 2012 PCI is Prophylactic Cranial Irradiation, also often called whole brain radiation. I have not had PCI, but I'm sure someone who can tell you more will be along soon. You might also check at GRACE for more information on it. Sorry to read of your dad's diagnosis, izzyleung. Best wishes for you both. Quote Link to comment Share on other sites More sharing options...
Joppette Posted March 9, 2012 Share Posted March 9, 2012 Ah! Well I do know WBR, or Whole Brain Radiation! My Mom and one of my best friends both had it. Both had marked improvement in their well being, and symptoms from the brain lesions. They did not have any cognitive issues. The only complaint I heard was that it caused minor fatigue, but they both said it was not a big deal. I could see almost immediate improvement in both of them. My friend's left side of her face was paralyzed from the tumor, so one side of her mouth and face drooped and her speech was slurred. By the second treatment, her face returned to normal, and her speech was normal. My Mom was having Grand Mal seizures. They were violent. They subsided after the first treatment. MI Judy Quote Link to comment Share on other sites More sharing options...
laban Posted March 9, 2012 Share Posted March 9, 2012 Bill was diagnosed with Limited SCLC and after his first rounds of chemo and radiation he had the PCI. The most significant thing from this treatment was hair loss. I don't remember any cognitive problems. It is the norm for SCLC and recommended for good reason. Even though he lived only another 16 months after PCI I'm not sure he ever had mets to the brain. Quote Link to comment Share on other sites More sharing options...
izzyleung Posted March 13, 2012 Author Share Posted March 13, 2012 thank you guys!!! My dad's CT scan does not show brain met, but PCI is recommended as a preventive measure which supposedly does increase survival. The doc did say the benefits outweigh the cost. So we will do it and I will pray hard for him to not have any significant side effects. I have a 5 months old baby and my dad loves to teach my baby stuff, he's the greatest grandfather. So i think it would pain him if he can no longer educate my child. Hopefully he will do well with treatment. I will keep you all posted. Sorry to hear about your loss, Laurie. SCLC is a real devil, I pray for all the fighters out there! izzy Quote Link to comment Share on other sites More sharing options...
Petunia Posted March 13, 2012 Share Posted March 13, 2012 Good luck with your dad's PCI. I have learned so much by visiting this site. How long was your dad diagnosed before he went for the PCI. Do you know how they will give him this test? I am also just curious about his diagnosis. How when did he get diagnosed? My mom just got diagnosed two weeks ago and just began her first cycle of chemo. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 13, 2012 Share Posted March 13, 2012 izzy, my first-born grandson lived near me til he was six. He and I (and his grandfather) have a close bond. I can't tell you how much he has factored into my resolve to face this disease head-on. Petunia, glad you found izzy. Sounds like you two can do some early dx info sharing. Judy in KW Quote Link to comment Share on other sites More sharing options...
izzyleung Posted March 18, 2012 Author Share Posted March 18, 2012 *update* the radiation doctor did an MRI of my dad's brain, very dishearteningly it shows 2 spots of 2cm and 1.8cm in his brain that was not seen in the CT scan in october. I was so sad, he (we) never got a break. every time he seems to get better, our hopes went up. but ever since he was dx with small cell (the worst type of LC in my opinion), the news was never good! i just can't believe we are having such streak of baaaad luck! now we don't have a choice but do whole brain radiation, hope that kills all those darn tumors!!! i am so angry that cancer is such a helpless disease! it;s like you have to count your blessings very day and pray it doesnt return and there is nothing you can do about it to make sure it doesn't return! there is nothing i can do. i don't know how much more i can take. but i have to continue to hope that the WBR will kill the cells and give him more time. precious time...it pains too much to see him wither away day by day...i wish i can give him some of my life... is anyone here with brain mets can share some of their experiences?? any survivor after that? what can we do differently to increase his odd of survival? Thanks for listening and sharing. Izzy Quote Link to comment Share on other sites More sharing options...
Petunia Posted March 19, 2012 Share Posted March 19, 2012 I am so sorry to hear about your news. I will pray that wbr will help him (and you). I am sorry I don't know much about it because I am learning also. It is weird how this disease turns your life into letters: sclc, wbc, pci, mri, wbr.. and we just want to say f.u. Spend this time with your dad and your baby and treasure every moment. I know it is hard to be positive at a time like this, but positive thoughts will do so much. I just talked to a friend of mine whose friend was diagnosed with ex scls and was told 3 months and she went through radiation (she had mets to her brain), chemo, and other tests, and was going on vacation the following year. It is hard to see your loved one be in pain. I wish we could take away even a sliver of their pain. Hang in there, think of positive times and positive outcomes and stay strong for your dad, you, and your baby. I will be waiting to hear how everything is going. Quote Link to comment Share on other sites More sharing options...
Janet B Posted March 22, 2012 Share Posted March 22, 2012 Izzy, I don't have SCLC so I can only offer you what I know from my NSCLC perspective. I was diagnosed over 5 years ago with mets to the pons area of my brain. They were treated with stereotactic radiation. Then last April several new mets showed up on my brain. I had Gamma Knife surgery on them. Here I am , more than 5 years from diagnosis, and I spent the day, shopping, chatting with my kids, and decorating for Easter. In other words, living. I wish the same for your Dad. Always have hope. And remember, no matter how hard, to try to find joy in each day! Praying for you and your dad Janet Quote Link to comment Share on other sites More sharing options...
izzyleung Posted March 26, 2012 Author Share Posted March 26, 2012 Thank you, Janet. Your story is encouraging! Hope to see you on this forum for MANY MANY MORE YEARS TO COME! Quote Link to comment Share on other sites More sharing options...
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