PCI after sclc remission,,,,,,,is it really safe??

[laban]

My husband has sclc and has been in treatment all summer. He was diagnosed 4/06 and had Carboplatin/Etoposide for 6 cycles along with 35 radiation treatments to his chest for 3 masses. He has permanent damage to his esophagus from the radiation burn. He has had to have his esophagus dilated 7 times to "remodel" it so that he can eat normally. He just had his scans and looks pretty good, I think. He is supposed to start PCI possibly next week. It's hard to find any up to date information on this treatment and would love to know someone who has been through it. My husband is just now starting to feel good. Will he be down again from the PCI? Thanks to anyone and everyone. lban

[ztweb]

Laban,

First let me say, welcome to the boards. I am so glad you found us. I am so sorry you had to, but glad you did, nonetheless.

Congrats on the excellent response for your husband. Cancer is so hard, but when we have hope, we are so much stronger. I was told that PCI was only given to those who had the possibility of a cure...thus my dad had the PCI. We were told that statistically, when you look at those who survive SCLC five years and longer, almost 100% of those indivduals have had PCI.

This was a very hard decision for our family. We went into the cancer journey together, thus we made the decisions together. My dad had decided that he didn't want to die with a tumor in his head, and although that was a possibility even with PCI, the chances go down significantly. He wanted to always know he had done whatever he could.

Dad had his this summer, so we have yet to see any side affects. He did re-lose his hair, and it hasn't come back, and he was EXTREMELY tired, and I would almost venture to say as much as with chemo. Granted, there were a ton of different circumstances...I guess the most important point is that he was tired. He was not nauseus, or sick to his stomach.

Your husband will get strapped to a table, and be fitted for a mask he will wear each and every treatment. Treatments are quick and he can drive afterwards. Dad had a tan head, and red ears.

This is about all the information I can give you. Our doc told us that every person who has PCI has some form of dimensia at some point in their life. She said it could range from, "Where did I put my keys?" to "I don't know if I took my meds, or did I brush my teeth yet?" She said that because everyone who gets PCI also gets older, they don't know how much beyond typical aging is happening in this regard. When I asked her if he would always know me, she laughed and said, oh of course.

God's blessings to you. Please keep us posted.

Jen

[laban]

Thank you ztweb for sharing your dad's story. Our Dr just gave us the "excellent response" treatment diagnosis and my husband still doesn't believe the cancer is actually gone. We will see the Radiation Oncologist on Thursday and I guess ask more questions then. I too am most thankful that God is watching over him and healing him from this awful disease and treatment. I'll stay in touch as we go.

[MEA]

Laban,

My husband was dx with sclc/nsclc on October 14, 2005. He also had Carboplatin/Etoposide & radiation treatments to his chest. He has been in remission since January 2006 and is doing well. Brain scan so far has not shown any brain mets.

Since my husband is an engineer, we are holding off on the the PCI. He also had a slight stroke in January and I think any additional forgetfulness would be hard for him to handle. For now, we are just monitoring and "being crazy nervous" during scan time.

Mary

Mary

[Connie B]

Lets look at this the other way. What are his chances withOUT the PCI? I know several members who have done PCI and not a ONE of them is sorry they did it. And they are all long term survivors.

God bless and Good Luck,

Connie

[dchurchi]

Iaban,

any time you are dealing with the brain it is scary.

My husband was DX Jan 2005 with SCLC. Alan had brain

Mets so PCI was never and option. Alan has done very

very well. His radiation treatments to his brain tumor were very successful.

Had we been given the option for PCI, I believe we would have had the treatments.

Good luck to you and your family.

[Cindy RN]

I choose not to have the PCI done.

I talked with the Dr and a few who had had it done. I decided not to. If I had mets to the brain THEN I would of course have it done

Everybody must make their own decision.

Cindy

[laban]

Thanks everyone.........Bill started his radiation today and it seems it will be a piece of cake compared to the chemo/radiation he had in the beginning. By the way, he is NED at this time. YEAH!!!!!!!!!!! Praise the Lord

[Don]

From all the different repiles, then one thing is for sure, no one knows. There is the old way and then there is the new way. Am sure it is a gamble whichever way you go. The oldest way was to just due the whole brain radiation (WBR) and then they decided alittle less was better (PCI). Then there was gamma knife and am sure there is another one by now.

I was very lucky that my rad onc wanted me to talk with a nerosurgeon before making a decision. The nuero doc said that today gamma knife should be used when possible since it would kill the tumor and do little damage to the brain. At least less damage than WBR or PCI. Gamma knife can be used on 8 tumors at a time and can be used again if needed. He indicated that he would save the WBR as a last attack if gamma knife could not be used or had failed. I chose gamma knife and brain MRI's clear since Sep 03. The study of long term effects of PCI or WBR still are not known completely since the majority of lung cancer patients dont make it pass 2 years. But, because of better treatments survivors are living longer now than ever before. Great news. The large amounts of steriods ate the ball joints of my hips so bad that now I have had total hip replacement on both sides. Again, was a long term effect that they didnt know. Doesnt happen to everyone but does some. Same as WBR, PCI, or gamma knife. To date I have not had WBR or PCI.

I say find out all you can and before you make your mind and have a back up plan for when something dosent work.

Have faith in whatever you do and just keep going.

God Bless

Don

[Alynn]

Sorry for my ignorance but what is PCI?

[laban]

Alynn, don't feel bad. I'm still trying to understand all the initials that I see on these boards.

PCI is Prophylactic Cranial Irradiation. This simply means that Bill will have radiation to his whole brain in case any microscopic cancer cells may have traveled up to his brain, even though none show up on the MRI.

His Dr has said that the only side effects he will have is fatigue and hair loss. The Dr also said that there is only a 1% chance of brain damage w/short term memory loss.

We understand that the radiation is half the rads and half the time that his chest radiation was. He had pretty severe side effects from the chest radiation, but is recovering pretty well. I'm just praying he doesn't have any long term side effects that show up later.

Stay with these boards.......these people are wonderful and so helpful.

Laurie

[twodogs]

laban

Hello, I hope things are going well for you folks. My first reaction to your posts was with the esophageal stricture issue. I know full well what that trip is all about. I'm over three years from the radiation treatment and still have occasional episodes of extreme difficulty swallowing and uncontrolled gagging. These days I hardly have any pain from it at all as long as I chew my food well and take itty, bitty, baby bites. Ice cream and custard are good. Other stuff, not so good.

To your question of PCI, we faced the same dilemma. I like to gamble and love Reno and such, so I went with the odds. The way they were explained to me it was obvious that PCI increased the odds of survival so that was my choice. Of course there is always the concern with loss of brain function but then again, it's a matter of choice. The PCI was accomplished in December of 2003 and I finished up just before Christmas.

First of all I lost my hair. I was bald by the time the treatment was over. Then, toward the end of February, it started coming back and by summer I had a full head of dark hair. That was kind of strange because I'd gone in with snow white hair that hadn't been dark since my early forties.

Mentally, I have noticed a reduction in the accuracy and speed of my memory. I think I still have excellent memory regarding most of my life but the recent memory gives me some problems. And I occasionally stumble for the right words. Instant recall has pretty much evaporated. I don't know if this is worse than it would have been normally or not. I still do as well or better than some friends who haven't had any illness or treatment when it comes to recalling names and events from the past.

Fatigue is an ongoing problem as is Shortness Of Breath. You'll get to know this as SOB, and it is. I don't know if it has anything at all to do with PCI as everyone seems to be affected to a certain degree. Different folks have different reactions and recovery times. I have also had blood count problems and receive an Epogen injection every three weeks for that.

I do a quick radio spot twice a week and occasionally write community interest articles for the local newspaper to help keep me alert. Thankfully, I have my computer with its built in dictionary and spell checking to help me through those tasks. I still try to hunt on occasion and would probably fish too except we sold our boat.

Overall, I think I'm satisfied with my choice to go ahead with PCI and can only wonder how things would have gone with out it.

I'm sure you'll do what's right for you.

Good Luck and Best Wishes to You Both.

[laban]

Thank you twodogs.........we appreciate any information we can get on this. Today will be Bill's 5th day of PCI and he feels fine, although he's not expecting much of anything until maybe into the end of the second week. The Dr did say that the rads given would not be as strong as compared to his initial chest radiation so with that he's plugging along. It's good to hear you stay active as I think that is so important to one's overall health.