Lung Cancer

bullrider
bullrider Member Posts: 3
I was diagnosed with lung cancer...non-small cell adenocarcinoma...in January 2012. It took from Thanksgiving until then for my doctors to come up with the diagnosis. My symptom was blockage of the esophagus. The GI people didn't react very quickly. I have a g-tube which was initialy used for feeding. One of my tumors was pressing against the esophagus. I had 38 radiation sessions and 7 chemo sessions. My last radiation treatment was on April 12th.This shrunk the tumor blocking the esophagus so I am able to eat by mouth once again. I still have the feeding tube though I haven't used it in quite awhile. It's back already.
Last week I found a small swollen node on the side of my neck. It was biopsied and found to be consistent with my previous cancer. Obviously it wasn't there before. I'm scheduled for a brain MRI tomorrow and a full body scan on Monday. I'll start an aggressive chemo treatment soon. I had carcoplatinum ? before now a stronger version this time. Twenty-one day cycle. Lots of antinausea meds so I guess I'm not going to feel too good.

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  • sleepless in jersey
    sleepless in jersey Member Posts: 185
    bullrider
    I am so sorry your going through all this. Were you tested for your mutation when your surgery was done to send out your tissue? Like ALK, K-RAS & EGRF?
    Have you gone for a 2nd opinion? When we told Mom's onc we were going for a 2nd opinion she was all on board and was all for it.
    Have you had MRI/ ct scans back in Nov. or Jan. and just comparing?

    Wishing you Luck for good MRI tomorrow and scan on Monday!

    God Bless
    Sleepless

    My Mom who’s 62 now. Has been DX 1/3/11 NSCLC (Adeno) Triple mutation neg. 10 days of WBR and brain surgery 1/11, started Carboplatin/Alimta/Zameta and B12, showed 1 tumor growing switched TX to Taxotere/Zameta 5/11 too many side effects, tumors have grown, port put in 8/11, thoracenteses x2 neg.- CA, pleurodesis on both lungs 8/11 & 10/11. Gemzar 8/11 growth and too many side effects.11/16/11 started Navelbine. 5//12 scans showed some growth to chest wall, switch to Topotecan. 7/12 progression with several brain mets, poss leptomeningeal disease (declined lumbar puncture). Tarceva 7/12
  • bullrider
    bullrider Member Posts: 3

    bullrider
    I am so sorry your going through all this. Were you tested for your mutation when your surgery was done to send out your tissue? Like ALK, K-RAS & EGRF?
    Have you gone for a 2nd opinion? When we told Mom's onc we were going for a 2nd opinion she was all on board and was all for it.
    Have you had MRI/ ct scans back in Nov. or Jan. and just comparing?

    Wishing you Luck for good MRI tomorrow and scan on Monday!

    God Bless
    Sleepless

    My Mom who’s 62 now. Has been DX 1/3/11 NSCLC (Adeno) Triple mutation neg. 10 days of WBR and brain surgery 1/11, started Carboplatin/Alimta/Zameta and B12, showed 1 tumor growing switched TX to Taxotere/Zameta 5/11 too many side effects, tumors have grown, port put in 8/11, thoracenteses x2 neg.- CA, pleurodesis on both lungs 8/11 & 10/11. Gemzar 8/11 growth and too many side effects.11/16/11 started Navelbine. 5//12 scans showed some growth to chest wall, switch to Topotecan. 7/12 progression with several brain mets, poss leptomeningeal disease (declined lumbar puncture). Tarceva 7/12

    lung cancer and lymphoma
    Obviously you're way ahead of me in your knowledge concerning this situation. I'll have to find out about the mutation...don't know anything about it at this point. I'll try to find out this week.
    I didn't have any previous MRIs but did have a CAT scan back in December.
  • Dawn50
    Dawn50 Member Posts: 122
    Hang on tight Cowboy
    Gonna be a heck of a ride! Husband had 39 radiation treatments, carboplatin/paclitaxel until spread, then Alimta until spread, and is currently on Gemzar which has been able to hold it at bay so far. He is currently on his third cycle of it. He too has adenocarcinoma and it is in the mediastinal nodes and was pushing against his esophagus and right brachial branch. The radiation shrunk it but didn't kill it so he still has active cancer at the original site. It has spread to the opposite lung, more lymph nodes, etc. When people ask him if he's done with chemo he always says nope will be on it for the rest of my life which is true. He got check for mutations and found it wasn't that kind so no magic cures for him. He will have a PET scan next month to see if the Gemzar continues to work. He has continued to work through it all and I think it gives him a reason to keep going.

    Hang in there!
  • sleepless in jersey
    sleepless in jersey Member Posts: 185
    Dawn50 said:

    Hang on tight Cowboy
    Gonna be a heck of a ride! Husband had 39 radiation treatments, carboplatin/paclitaxel until spread, then Alimta until spread, and is currently on Gemzar which has been able to hold it at bay so far. He is currently on his third cycle of it. He too has adenocarcinoma and it is in the mediastinal nodes and was pushing against his esophagus and right brachial branch. The radiation shrunk it but didn't kill it so he still has active cancer at the original site. It has spread to the opposite lung, more lymph nodes, etc. When people ask him if he's done with chemo he always says nope will be on it for the rest of my life which is true. He got check for mutations and found it wasn't that kind so no magic cures for him. He will have a PET scan next month to see if the Gemzar continues to work. He has continued to work through it all and I think it gives him a reason to keep going.

    Hang in there!

    Dawn50
    Dawn I noticed that your husband was neg. for the triple mutations have you had him tested in Boston with Dr. Shaw who tests for a lot more mutations than just the 3 we do here?
    I don't know if you had noticed CRIAGINPA he is new to site and had gone there and he has a new mutation that they found. You will see under somebodies forum is "mutation" he responded in.
    I wanted to get Mom there, however when she had poss. lepto with the head MRI she was turned down unless she was driven to find out the mutation, but was not going to be treated.

    God Bless
    Sleepless


    My Mom who’s 62 now. Has been DX 1/3/11 NSCLC (Adeno) Triple mutation neg. 10 days of WBR and brain surgery 1/11, started Carboplatin/Alimta/Zameta and B12, showed 1 tumor growing switched TX to Taxotere/Zameta 5/11 too many side effects, tumors have grown, port put in 8/11, thoracenteses x2 neg.- CA, pleurodesis on both lungs 8/11 & 10/11. Gemzar 8/11 growth and too many side effects.11/16/11 started Navelbine. 5//12 scans showed some growth to chest wall, switch to Topotecan. 7/12 progression with several brain mets, poss leptomeningeal disease (declined lumbar puncture). Tarceva 7/12
  • bullrider
    bullrider Member Posts: 3

    bullrider
    I am so sorry your going through all this. Were you tested for your mutation when your surgery was done to send out your tissue? Like ALK, K-RAS & EGRF?
    Have you gone for a 2nd opinion? When we told Mom's onc we were going for a 2nd opinion she was all on board and was all for it.
    Have you had MRI/ ct scans back in Nov. or Jan. and just comparing?

    Wishing you Luck for good MRI tomorrow and scan on Monday!

    God Bless
    Sleepless

    My Mom who’s 62 now. Has been DX 1/3/11 NSCLC (Adeno) Triple mutation neg. 10 days of WBR and brain surgery 1/11, started Carboplatin/Alimta/Zameta and B12, showed 1 tumor growing switched TX to Taxotere/Zameta 5/11 too many side effects, tumors have grown, port put in 8/11, thoracenteses x2 neg.- CA, pleurodesis on both lungs 8/11 & 10/11. Gemzar 8/11 growth and too many side effects.11/16/11 started Navelbine. 5//12 scans showed some growth to chest wall, switch to Topotecan. 7/12 progression with several brain mets, poss leptomeningeal disease (declined lumbar puncture). Tarceva 7/12

    Hi sleeplesss
    I've been out of commission for a bit. My biopsy showed that my mutation? is CK20, CK7 ?
    I've started the new stronger chemo of Cyclophosphamide etc. I was sicker than a pooch from this one. I'm on a twenty one day cycle for how long I don't know. Anyone else know this stuff?