totally confused

iblev
iblev Member Posts: 13
edited March 2014 in Lung Cancer #1
i am so confused that i don't even know if i can ask a decent question. But here goes; I was diagnosised with NSC adenocarcinoma (lung primary) as a result of a thoracentisis due to a pleural effusion. I have underwent a number of pet/ct scans; just pet scan; and just ct scans. all of them have not shown any sign of cancer. i also had a plurex cather placed to drain the effusion. that has now been removed. no more effusion. At the same time that the cather was placed i had a VAT completed. The surgeon wrote "tumor caking the entire parietal surface with studding in the visceral pleural surface". I guess my question is this: would that not show up on a scan? the reason i am asking is i just did a medical record review of my file, no one has ever told me and I went from being very hopeful to scared to death. I was first diagnosised on July 15th and they gave me 30 days to 3 mnths.... well, i am well past that now... and my current oncologist has said my short term outlook is better, but not long term. I have not been back to my oncologist since Nov and have a 3 month appt in Feb; so i want as much info as i can get. Another question would be is what does it feel like when the lung begins to be encased in tumor. I always feel like there is a band or tightness in my rib cage area. thanks everyone in advance.

Comments

  • Lyndawithay
    Lyndawithay Member Posts: 14
    #2
    sounds like your case is similar to mine. (See my posting same day titled nsclc with mutation). My doc is waiting for the test on the tumor before telling us about the chemo, but he is planning on something very soon. I don't understand the long wait. We are having a meeting on the 26th of Jan to discuss the treatment plan. I finished my chemo for cll (leukemia) in May 2005 so that may complicate my treatment, but I will let you know what I find out. The NSCLC and CLL are not related and are seperate cancers
  • iblev
    iblev Member Posts: 13
    #3
    Lyndawithay said:

    sounds like your case is similar to mine. (See my posting same day titled nsclc with mutation). My doc is waiting for the test on the tumor before telling us about the chemo, but he is planning on something very soon. I don't understand the long wait. We are having a meeting on the 26th of Jan to discuss the treatment plan. I finished my chemo for cll (leukemia) in May 2005 so that may complicate my treatment, but I will let you know what I find out. The NSCLC and CLL are not related and are seperate cancers

    Thanks for the reply. I read your post. That is so interesting. I recieved taxol/carbo for four rounds and am currently on Tarceva.I wonder what the mutation is that your doctor is talking about? Also no one has ever mentioned having my blood tested as you are having done. Please let me know what you find out. I feel like i am playing doctor for myself and i find that it is very frustrating. Thanks agian
  • Lyndawithay
    Lyndawithay Member Posts: 14
    #4
    iblev said:

    Thanks for the reply. I read your post. That is so interesting. I recieved taxol/carbo for four rounds and am currently on Tarceva.I wonder what the mutation is that your doctor is talking about? Also no one has ever mentioned having my blood tested as you are having done. Please let me know what you find out. I feel like i am playing doctor for myself and i find that it is very frustrating. Thanks agian

    Some insight into your question about a lung being encased by tumor can be found by doing a search for "malignant pleural effusion". You should find info about the treatment of the effusion.
  • rpatt
    rpatt Member Posts: 23
    #5
    iblev said:

    Thanks for the reply. I read your post. That is so interesting. I recieved taxol/carbo for four rounds and am currently on Tarceva.I wonder what the mutation is that your doctor is talking about? Also no one has ever mentioned having my blood tested as you are having done. Please let me know what you find out. I feel like i am playing doctor for myself and i find that it is very frustrating. Thanks agian

    iblev,
    I was wondering if your fatigue has cleared up at all since starting the Tarceva. My husband seems to be experiencing the same side-effect, along with the rash. Let me know if you can!
  • iblev
    iblev Member Posts: 13
    #6
    rpatt said:

    iblev,
    I was wondering if your fatigue has cleared up at all since starting the Tarceva. My husband seems to be experiencing the same side-effect, along with the rash. Let me know if you can!

    Hi rpatt: In answer to your question, i was put on ritalin for the fatique a few weeks ago. Apparently it gives you a false sense of energy for approximently four hours. This helped so much it was great. Just recently i have been able to back off using it. Dr. said that my body will slowly rid it self of the side affects. Dr. said i would prolly get the rash too, but i did not. the bad news for me and the good news for your husband is that i did some research and it appears that there is some indication that if you get the rash it means that it is working. I was also told by the dr if i did get the rash it would also go away. It does take some time tho since i have been on the tarceva two months. I say your other post where you said that your husband was having trouble with his breathing. I was told agian my the doctor that if i experienced diffuculty with my breathing to let him know immediately. So i hope you did check with your dr. if you did, can i ask what he thought? sometimes i struggle a bit but not sure if is just fatique or what. I am working too much right now and need to slow down, but my job just doesn't allow me to do that at this point. Hope all is going well. I am having a scan done on 2/10 to see if the tarceva is working... i am sooooo anxious! Lets keep each other informed .. this is a relatively new drug...maybe our answer!
  • indianterry
    indianterry Member Posts: 1
    #7
    iblev said:

    Thanks for the reply. I read your post. That is so interesting. I recieved taxol/carbo for four rounds and am currently on Tarceva.I wonder what the mutation is that your doctor is talking about? Also no one has ever mentioned having my blood tested as you are having done. Please let me know what you find out. I feel like i am playing doctor for myself and i find that it is very frustrating. Thanks agian

    hey sorry reply so late. i am confused also cancer is confusing finished my chemo now, it may be back pray for me ok?
  • Lyndawithay
    Lyndawithay Member Posts: 14
    #8
    iblev said:

    Thanks for the reply. I read your post. That is so interesting. I recieved taxol/carbo for four rounds and am currently on Tarceva.I wonder what the mutation is that your doctor is talking about? Also no one has ever mentioned having my blood tested as you are having done. Please let me know what you find out. I feel like i am playing doctor for myself and i find that it is very frustrating. Thanks agian

    They were looking for a mutation of the EGFR (growth factor receptor). The test was negative, so Tarceva won't work. I will start on Paclitaxel(Taxol), Carboplatin, & Bevacizumab (Avastin). This treatment is new (may2005) for advanced NSCLC.

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