Lung Cancer Radiation - PCI

lindac
lindac Member Posts: 7
edited March 2014 in Lung Cancer #1
Hi,
I have localised small cell lung ca which was diagnosed mid August. I am currently in the 3rd cycle of 5 cycles of chemo. After this I will be given 15 sessions of radiation to the lung and PCI (prophylactic cranial irradition). Because small cell ca spreads very quickly and the first site is often the head PCI is given to hopefully zap any microscopic cells that may be present. I am very nervous about this treatment because of possible side affects like intellectual impairment and memory loss. I would be interested if anyone else has had this treatment and what side effects if any they have experienced.
THanks

Comments

  • loulou
    loulou Member Posts: 65 Member
    #2
    I was wondering if you are dianosed with non small cell lung, or small cell lung cancer? I had non small lung cancer in my right upper lung, it spread to lymph nodes, and two tumors in my brain. They also wanted to do a full head radiation. I didn't feel comfortable with the sounds of that either ( side effects). I was told about a procedure called stereo tat tic radio surgery. Which is a localized high beam of radiation directly on the tumor. High cure rate, like 80%. I think you need to do what you feel comfortable with. What does your gut tell you? loulou
  • lindac
    lindac Member Posts: 7
    #3
    loulou said:

    I was wondering if you are dianosed with non small cell lung, or small cell lung cancer? I had non small lung cancer in my right upper lung, it spread to lymph nodes, and two tumors in my brain. They also wanted to do a full head radiation. I didn't feel comfortable with the sounds of that either ( side effects). I was told about a procedure called stereo tat tic radio surgery. Which is a localized high beam of radiation directly on the tumor. High cure rate, like 80%. I think you need to do what you feel comfortable with. What does your gut tell you? loulou

    Hi Loulou,
    Thanks for your reply. I have small cell cancer. At present there are no secondaries so there is no tumour in my head. They do a full head radiation as a precaution in case there are any microscopic cells in there. I will probably go ahead with it as the consequences of not having it mean a greater likelyhood of a spread to the brain. I have to finish chemo first so the radiation will not be till next year. Another thing I'm a bit iffy about is the face mask that they have to do which is actually screwed down onto the table so that you don't move !! I think think either plaster of paris or a lightweight plastic is used.
    Regards,
    Linda
  • rhondantx
    rhondantx Member Posts: 1
    #4
    loulou said:

    I was wondering if you are dianosed with non small cell lung, or small cell lung cancer? I had non small lung cancer in my right upper lung, it spread to lymph nodes, and two tumors in my brain. They also wanted to do a full head radiation. I didn't feel comfortable with the sounds of that either ( side effects). I was told about a procedure called stereo tat tic radio surgery. Which is a localized high beam of radiation directly on the tumor. High cure rate, like 80%. I think you need to do what you feel comfortable with. What does your gut tell you? loulou

    Lou Lou,
    Did you have the gamma knife procedure?
  • loulou
    loulou Member Posts: 65 Member
    #5
    rhondantx said:

    Lou Lou,
    Did you have the gamma knife procedure?

    Hi rhondantz, this is loulou. Yes, I did have stereotactic radio surgery, and so far I have had great results. loulou
  • loulou
    loulou Member Posts: 65 Member
    #6
    rhondantx said:

    Lou Lou,
    Did you have the gamma knife procedure?

    Hi rhondantz, louloul here. I'm sorry it has taken me so long to get back to you. I had stereotactic radiosurgery done. I think, not 100% sure, it is the same thing. If not there very close. I had very good luck with this procedure. There is a good web site at John Hopkins brain therepy radiosurgery. Very interesting information on these types of procedures. Hope to hear from soon. loulou
  • linda10
    linda10 Member Posts: 2
    #7
    HI, just got done with the cranial radiation. Would love to talk to anyone with small cell lung cancer. I am really frightened. Linda10
  • linda10
    linda10 Member Posts: 2
    #8
    lindac said:

    Hi Loulou,
    Thanks for your reply. I have small cell cancer. At present there are no secondaries so there is no tumour in my head. They do a full head radiation as a precaution in case there are any microscopic cells in there. I will probably go ahead with it as the consequences of not having it mean a greater likelyhood of a spread to the brain. I have to finish chemo first so the radiation will not be till next year. Another thing I'm a bit iffy about is the face mask that they have to do which is actually screwed down onto the table so that you don't move !! I think think either plaster of paris or a lightweight plastic is used.
    Regards,
    Linda

    The material they used on me was some sort of netting molded to your face and head to keep it still while they treated you. They put this mask on (very tight) and clamp you mask to the table and give you your treatment.
    Linda10
  • bunny46
    bunny46 Member Posts: 3
    #9
    linda10 said:

    HI, just got done with the cranial radiation. Would love to talk to anyone with small cell lung cancer. I am really frightened. Linda10

    Hi Linda, I too have the small cell lung cancer, caught early did lobectomy chemo and radiation to chest. Now they want me to do the prophylactic cranial radiation. I am having a hard time trying to make a decision to do this. How long does it take when they put that mask on your face? I have already been simulated for that and didn't like that at all/ I don't want to go through all these side effects again. Did you get fluid behind your eardrums and lose hair? Tell me all you can. Thank-you Bunny46
  • lindac
    lindac Member Posts: 7
    #10
    bunny46 said:

    Hi Linda, I too have the small cell lung cancer, caught early did lobectomy chemo and radiation to chest. Now they want me to do the prophylactic cranial radiation. I am having a hard time trying to make a decision to do this. How long does it take when they put that mask on your face? I have already been simulated for that and didn't like that at all/ I don't want to go through all these side effects again. Did you get fluid behind your eardrums and lose hair? Tell me all you can. Thank-you Bunny46

    Hi Bunny,
    I haven't had this treatment yet, however my last chemo is due in a weeks time and then I'll have an initial meeting with the radiation oncologist re starting early next year. I have heard all sorts of things so hope that he/she will be able to answer as best they can. Possible effects that worry me are - early dementia (3+ years after treatment), intellectual impairment (dementia ??), memory loss, difficulty in swallowing - these are the ones I know of as well as hair loss. I also hear that the specialists are not too concerned about the early dementia because only a small percentage of SCLC survive at 3-5 years - now that cheers me up no end.
    They do have an orientation of the radiology unit prior to treatment but I have yet to go on it.
    Linda
  • mgjet
    mgjet Member Posts: 1
    #11
    lindac said:

    Hi Loulou,
    Thanks for your reply. I have small cell cancer. At present there are no secondaries so there is no tumour in my head. They do a full head radiation as a precaution in case there are any microscopic cells in there. I will probably go ahead with it as the consequences of not having it mean a greater likelyhood of a spread to the brain. I have to finish chemo first so the radiation will not be till next year. Another thing I'm a bit iffy about is the face mask that they have to do which is actually screwed down onto the table so that you don't move !! I think think either plaster of paris or a lightweight plastic is used.
    Regards,
    Linda

    I am searching for any information about the side effects of cranial radiation.My best friend has small cell lung cancer and has taken 7 weeks of radiation and 6 months of chemo,three days each month. Now that she has finished the round the doctors want to do the cranial radiation as a preventative for 20 treatments.She has heard many conflicting stories about the effects to the brain. Do you have any info I can pass on to her. She is really afraid.Thanks Teresa
  • JamesT
    JamesT Member Posts: 1
    #12
    mgjet said:

    I am searching for any information about the side effects of cranial radiation.My best friend has small cell lung cancer and has taken 7 weeks of radiation and 6 months of chemo,three days each month. Now that she has finished the round the doctors want to do the cranial radiation as a preventative for 20 treatments.She has heard many conflicting stories about the effects to the brain. Do you have any info I can pass on to her. She is really afraid.Thanks Teresa

    Mgjet -How old is your friend? My husband is 63 and is faced with the decision of whether to undergo PCI due to the side effects. He's had a course of similar treatment but with the 25 radiation treatments sandwiched between the chemo sessions - 1 3-day session each month for 2 months prior and the same following the radiation treatments to his chest. Have you had any response to your message of 7/29/03?

    Linda
  • leeday
    leeday Member Posts: 2
    #13
    mgjet said:

    I am searching for any information about the side effects of cranial radiation.My best friend has small cell lung cancer and has taken 7 weeks of radiation and 6 months of chemo,three days each month. Now that she has finished the round the doctors want to do the cranial radiation as a preventative for 20 treatments.She has heard many conflicting stories about the effects to the brain. Do you have any info I can pass on to her. She is really afraid.Thanks Teresa

    My husband has lung cancer, he took Iressa for about 8 months. Apparently it worked for awhile. In April he went to md anderson for second opinion. We were really impressed with them. There was another mass on the other lung, they recommended caroplatin and gemcitabine one week, the next week only gemcitabine,the next week off. This is a round. He had three rounds and the second mass is just a speck if that. The orginal tumor has shrunk a little. His problem now is his counts have been low and he's had platlets a couple of times. And the terrible itching on his neck. He's taking hydroxyzine hcl 50mg for this and it just knocks him out. The doctor now is trying only the gemcitabine for a couple of rounds and take another cat scan.
  • Unknown
    Unknown
    #14
    This comment has been removed by the Moderator

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