Stage 3B NSCLC in partial remission

rpatt
rpatt Member Posts: 23
edited March 2014 in Lung Cancer #1
My husband (43 yrs. old) has been battling stage 3B lung cancer since March 05. First of all, I would like to give hope to those that are reading this by saying, as my husband's case has shown so far, don't listen to statistics because every case is individual. He received an immediate response to the treatment in reduction of tumor size and no new growth over the last 9 months. He now is in partial remission. The last PET scan showed no tumors at all but indicated "hot spots" (I guess this means areas where there could be cancer activity). My question is are there others out there in this situation and what sort of continued treatment has worked for you? His doctor is putting him on Tarceva to see how this works, but is not ruling out some more chemo in the future since he has responded so well. We have been told that surgery is not an option since there was cancer in both sides of the lungs. Any input would be appreciated! Thank you!

Comments

  • iblev
    iblev Member Posts: 13
    Hi rpatt; i was diagnosised in July with 3b adenocarcinoma-non small cell lung cancer with pleural effusion. All my scans have come back clean but i had a thoroscopic in August at that time they placed a pleurx cather in (which was removed today..yeah) At the time of the thoroscopic the thoratic surgeon said he saw lesions on the surface of my lung. Did not give me any hope of more than 30 days to 3 months. Told me to think twice about chemo. Well, did not listen to him and went on chemo. Had 4 rounds of taxo/carboplatin. Handled that very well; then in NOvember i started Tarceva. Huge terrific fatique; but they say that will get better. I was given a short lived stimulant to take (started that today as the fatique was making it difficult to function). They say the Tarceva is effective so i am holding out hope. I had a chest xray today and they noticed that i have some pleural thickening that was not there before. Not sure if that is good or bad. One thing that i struggle so much with is that i never remember what questions to ask until i get home and then they never get answered. I am not slated to see my ongologist until Feb. I liked your message and it gives me hope. The biggest struggle (ok one of the biggest struggles) i face is the not knowing if anything is working. I am not measurable so it is hard to say whether the Tarceva is doing it's job or even if the chemo did it's job. I suppose i will know in Feb when they do the ct scan and see if they can detect the cancer. Can you share your story? What chemo was he on? What does partial remission mean? Thanks for the info...
  • rpatt
    rpatt Member Posts: 23
    iblev said:

    Hi rpatt; i was diagnosised in July with 3b adenocarcinoma-non small cell lung cancer with pleural effusion. All my scans have come back clean but i had a thoroscopic in August at that time they placed a pleurx cather in (which was removed today..yeah) At the time of the thoroscopic the thoratic surgeon said he saw lesions on the surface of my lung. Did not give me any hope of more than 30 days to 3 months. Told me to think twice about chemo. Well, did not listen to him and went on chemo. Had 4 rounds of taxo/carboplatin. Handled that very well; then in NOvember i started Tarceva. Huge terrific fatique; but they say that will get better. I was given a short lived stimulant to take (started that today as the fatique was making it difficult to function). They say the Tarceva is effective so i am holding out hope. I had a chest xray today and they noticed that i have some pleural thickening that was not there before. Not sure if that is good or bad. One thing that i struggle so much with is that i never remember what questions to ask until i get home and then they never get answered. I am not slated to see my ongologist until Feb. I liked your message and it gives me hope. The biggest struggle (ok one of the biggest struggles) i face is the not knowing if anything is working. I am not measurable so it is hard to say whether the Tarceva is doing it's job or even if the chemo did it's job. I suppose i will know in Feb when they do the ct scan and see if they can detect the cancer. Can you share your story? What chemo was he on? What does partial remission mean? Thanks for the info...

    I know what you mean about the unknown, but I try to reframe it to myself and my husband that if we dont's know, it is because things are going well. A doctor once told me it is really easy to tell how long someone has to live when they haven't responded to the treatment, but they can't give you any idea when someone is doing well. Everyone responds so differently to the treatment, so I am happy to hear that you gave it a chance. Maybe see if your doctor and insurance (of course!) would be willing to authorize a PET scan. This measures metabolism in cells, which can show if there is growth going on in those areas, a little more precise than a CT scan. Please see "Mets to the bone" above this message. I resonded to that, 2X in fact ;-) and explained my husbands situation. I apologize in advance for how long winded I am in telling his story, but it still seems like I left stuff out. Let me know if you want any more info! Keep us posted on the Tarceva. My huband just started the same thing.
  • iblev
    iblev Member Posts: 13
    rpatt said:

    I know what you mean about the unknown, but I try to reframe it to myself and my husband that if we dont's know, it is because things are going well. A doctor once told me it is really easy to tell how long someone has to live when they haven't responded to the treatment, but they can't give you any idea when someone is doing well. Everyone responds so differently to the treatment, so I am happy to hear that you gave it a chance. Maybe see if your doctor and insurance (of course!) would be willing to authorize a PET scan. This measures metabolism in cells, which can show if there is growth going on in those areas, a little more precise than a CT scan. Please see "Mets to the bone" above this message. I resonded to that, 2X in fact ;-) and explained my husbands situation. I apologize in advance for how long winded I am in telling his story, but it still seems like I left stuff out. Let me know if you want any more info! Keep us posted on the Tarceva. My huband just started the same thing.

    Thank you rpatt... what an inspiration you and your husband are to me. You are so right in the reframing. I also try to keep remembering that i am still functioning rather well so things must be going well. I have had several pet/ct scans and nothing has ever shown up. I am scheduled for another in Feb. The tarceva is hard for me right now. It makes me so much more tired than the chemo did, so therefore, my mental health suffers from not being able to do as much as i am used to. How is your husband doing. My oncologist tells me that the symptoms take some getting used to but it will get better. The stimulate helps me function in the after noon. I did not get a rash tho. Happy New Year to both you and your husband. He is so young... i am 51 and have been fortunate to see my children grow into wonderful adults, so my prayers are with your family. Agian Happy New Year... 2006 is going to be the year of great things!