SCLC...PCI...Yes or No

Kerstin
Kerstin Member Posts: 9
edited March 2014 in Lung Cancer #1
Hi everybody, I have SCLC, dx back in March 06, have been through Chemo and Radiaton, Bone scan came back negativ, Yeah and now I have to get my CT scan and Brain scan done next week, I pray that are negative too, now comes my question.
Brain Radiation...yes or no, the more I research the more confused I get, severe long term side effects versus a better chance of it not coming back in the brain, is anybody out there that had had it done, please any info will be greatly appreciated.|
Thank you so much, God less you ...Kerstin

Comments

  • kaitek
    kaitek Member Posts: 156 Member
    #2
    I don't have the answers for you as I haven't experienced any of your issues either directly or indirectly. I just want to wish you well.
  • michaelcie
    michaelcie Member Posts: 133
    #3
    Hi Kerstin, I have sclc, am four years out since last february. I chose not to have the Prophylactic Brain Irradiation, and I guess have been graced thus far. I know they say the chances are great about brain cancer for the first two years but I myself did not like the side effects of it , so I would not let my radiologist do it to me , against his wishes.I can only say to you, that you have to make your own choice , and you are the only one that can do that. YOu have to be comfortable about it and your decision and like anything else , it is a gamble . I know I haven't helped you much with your decision but , I just had to let you know the other side of not receiving the rads to the brain. Godbless and in my prayers , Mike
  • Diane411
    Diane411 Member Posts: 13
    #4
    I understand your confusion. Everything I've read about prophylactic therapy sounds like it would be a winner as far as brain mets, but wow, do you really want to radiate your brain? Sounds very scarry.

    My dad has nsclc and is mid-way through his treatments (chemo & rad). During my research on the subject, I've read that even though a brain MRI can come back negative, the cancer cells can still be there just waiting to attack. Your question of yes or no is also one of my questions. I plan to ask this question at our next visit. I'll keep you posted. In the meantime, take care.
  • LVsurvivor
    LVsurvivor Member Posts: 7
    #5
    I had PCI Jan 06 after reading qualified journal articles about PCI research.

    The short term side effects were minimal & long term remain to be seen. I'm 59 and believe it was a good choice for me. Good luck with your decision.

    Dee
  • lban
    lban Member Posts: 13
    #6
    Kerstin, my husband has sclc. He had 35 rads and 6 months of chemo which he just finished. He is due to have 17 days of PCI in about 4 weeks. He sees his Oncologist soon and I guess scans will be ordered. So far we plan to get the PCI. Anyway, I just wanted to tell you that I met a woman at the cancer center who had sclc with very much the same treatment regimen. Her doctor did not suggest PCI. She now (less than one year later) has mets to her brain which was found because of seizures and weakness in her right hand. She has also lost her sight in one eye. Everything I read on the web is old information. I am pretty sure that this PCI treatment plan is a result of people not getting it and thus the cancer going to the brain. The doctors assure us that the only side effect of these 17 treatments will be hair loss and some fatigue. We'll see. I realize this reply is several weeks old so I don't know if you have already had it or not. My thoughts and prayers are with you and all cancer patients. lban
  • Kerstin
    Kerstin Member Posts: 9
    #7
    Hi there, ty so much...I have decided to do the PCI, have had 6 treatments so far, 9 more to go...I believe it is the way to go...like you said better than brain mets...let me know how ur husband is doing...My prayers ....Kerstin
  • lban
    lban Member Posts: 13
    #8
    Kerstin said:

    Hi there, ty so much...I have decided to do the PCI, have had 6 treatments so far, 9 more to go...I believe it is the way to go...like you said better than brain mets...let me know how ur husband is doing...My prayers ....Kerstin

    Hi Kerstin...wondering how you're dealing with PCI. Any side effects, fatigue? Is it what they told you it would be like? Just wondering as I think my husband will be starting the end of the month, depending on what the PET and MRI says. Stay in touch, if you can. email me if you like at lban@bellsouth.net
    Laurie
  • kal60
    kal60 Member Posts: 4
    #9
    Hi Kerstin, I just found this site and your message. Am wondering how you are doing and about your decision about the pci. My sister-in-law is trying to make the same decision now, and as you know, it is agonizing. Sending you good thoughts and prayers.
  • kal60
    kal60 Member Posts: 4
    #10
    lban said:

    Kerstin, my husband has sclc. He had 35 rads and 6 months of chemo which he just finished. He is due to have 17 days of PCI in about 4 weeks. He sees his Oncologist soon and I guess scans will be ordered. So far we plan to get the PCI. Anyway, I just wanted to tell you that I met a woman at the cancer center who had sclc with very much the same treatment regimen. Her doctor did not suggest PCI. She now (less than one year later) has mets to her brain which was found because of seizures and weakness in her right hand. She has also lost her sight in one eye. Everything I read on the web is old information. I am pretty sure that this PCI treatment plan is a result of people not getting it and thus the cancer going to the brain. The doctors assure us that the only side effect of these 17 treatments will be hair loss and some fatigue. We'll see. I realize this reply is several weeks old so I don't know if you have already had it or not. My thoughts and prayers are with you and all cancer patients. lban

    Hello Iban, I just read your message as I am researching pci as my sister-in-law, age 66, is currently trying to make this decision. Her chemo and radiation have just finished, and her docs want her to start pci very soon. She wants to do all she can, but as you well know, is very scared about possible side effects. Wanted to know how your husband is doing. Will be very grateful for any info or insights you can share with us. Thanks for reading. Kathy
  • mr.steadyed
    mr.steadyed Member Posts: 2
    #11
    kal60 said:

    Hi Kerstin, I just found this site and your message. Am wondering how you are doing and about your decision about the pci. My sister-in-law is trying to make the same decision now, and as you know, it is agonizing. Sending you good thoughts and prayers.

    really need to know if someone has any info,my mom has to make a decision soon,has anyone had pci done,any follow up on how it went?? please...thanx ed.
  • upnorthtex
    upnorthtex Member Posts: 4 Member
    #12
    PCI
    My wife had PCI during Dec 06, with little or no side effects. Her last scans (June)Were clean and she still doesn't have any problem other than some short term memory loss, but she is 69. She still square dances several times a week and that requires a lot of memory to do the calls. Has no problems on the floor. We are happy with the results. Art

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