Kristin BG

Hi all. It's been several months since my one and only post. My husband has been experiencing debilitating tumor pain after he has a chemo infusion. He's on infusion #5 of Folfox, which is the "gold standard" chemo for colon cancer, which is technically what he has. BUT the beast of a tumor currently in his body is in his left lung, so much of the info I seek I find here. Plus, kudos to whoever designed this site! I find it much more user friendly than any of the colon cancer support sites. The original colon cancer was resected 5 years ago and we thought he was home free after years of surveillance. Then he started coughing and we discovered a 8+cm mass in his left lung. No cancer in his colon et al, so that's good. It kinda feels like we don't belong anywhere because the colon cancer sites deal with ostomies and stomas and all sorts of those things, which thankfully he doesn't have to deal with. But the drugs and treatment discussions found here don't apply to what he's doing either... so we are kinda homeless. But I throw this question out to you all in case someone has also had wicked lung tumor pain associated with chemo. My poor husband sits and pants just to manage it. If he stays perfectly still, it is manageable. But the first cough, or if he needs to talk or get up and move... aw nellie. He says it feels like a ripping or an icepick being slipped between his ribs with every inhalation. We conjecture that the chemo is causing the infiltrating roots of the mass to regress, which accounts for the ripping sensation. ???? Anyway - BAD pain. Like oxycodone every 4 hours barely makes it manageable. It lasts for 2 1/2 days after Chemo then it somewhat rapidly decreases. The oncologist can't say much about it. He shrugs his shoulders and puts it in the "big bag of cancer pain." Anyone have a similar experience? If so, how do you manage it? Thanks! KG

Hi all. It's been several months since my one and only post. My husband has been experiencing debilitating tumor pain after he has a chemo infusion. He's on infusion #5 of Folfox, which is the "gold standard" chemo for colon cancer, which is technically what he has. BUT the beast of a tumor currently in his body is in his left lung, so much of the info I seek I find here. Plus, kudos to whoever designed this site! I find it much more user friendly than any of the colon cancer support sites. The original colon cancer was resected 5 years ago and we thought he was home free after years of surveillance. Then he started coughing and we discovered a 8+cm mass in his left lung. No cancer in his colon et al, so that's good. It kinda feels like we don't belong anywhere because the colon cancer sites deal with ostomies and stomas and all sorts of those things, which thankfully he doesn't have to deal with. But the drugs and treatment discussions found here don't apply to what he's doing either... so we are kinda homeless. But I throw this question out to you all in case someone has also had wicked lung tumor pain associated with chemo. My poor husband sits and pants just to manage it. If he stays perfectly still, it is manageable. But the first cough, or if he needs to talk or get up and move... aw nellie. He says it feels like a ripping or an icepick being slipped between his ribs with every inhalation. We conjecture that the chemo is causing the infiltrating roots of the mass to regress, which accounts for the ripping sensation. ???? Anyway - BAD pain. Like oxycodone every 4 hours barely makes it manageable. It lasts for 2 1/2 days after Chemo then it somewhat rapidly decreases. The oncologist can't say much about it. He shrugs his shoulders and puts it in the "big bag of cancer pain." Anyone have a similar experience? If so, how do you manage it? Thanks! KG

Thanks for the encouragement. This whole experience has been so up and down - just riding the waves as best I can. Your words of advice, testimonies of successful treatment, and links to resources is so appreciated and just what I needed. Truly, it lifted my spirits. Thank you. Chemo begins soon, SRS soon after that, kicking cancer’s butt after that. We’ve got a full a schedule. Staying the course! ~K

Well. We got results. This lung cancer is a metastasis of my husband's colon cancer he had 5 years ago. When the lung cancer was found the oncologist told him it was not related to the colon cancer because my husband was just given the 5 year all-clear in late November - just 5 weeks before the troublesome lung CT. Back then the colon cancer was stage 2 and no lymph node involvement. After the resection, the Oncologist told him it was unlikely to recur as they had caught it early and everything pointed to it being "cured." It’s just crazy to me that this has hidden undetected for 5 years. But that explains why the lung mass is SO large. These last 5 years, my husband has been diligently going for his follow up tests and blood draws and there was never any indication that the cancer was making the rounds. Just crazy. It is Stage IV adenocarcinoma metastasized to lung and brain. Yes. It's in his brain. 2 confirmed lesions, 1 suspected. They are small: 9mm and 6mm, one in the left and the other in the right parietal lobe. Gutted. We have chemo planned for the 8cm beast in his left lung, and stereotactic radiation for the brain lesions. Will start those mid to late February. Kind of a long on ramp for the chemo, so radiation might start first. Then probable surgery after the 6 months of chemo (Folfox). They are entering him in to a clinical trial for some sort of immunotherapy. So, we've got a 4 pronged treatment plan. Anyone have miraculous, encouraging stories of brain mets living years and years? Would love to hear them. We are staying the course. Trying to be positive for my guy. ~K

Hi all. Happy to say that my husband was scheduled for all the fact-finding procedures for 1/25: biopsy, MRI, PET. I'm so grateful to get these all done on the same day to shorten the wait time for staging and identifying a treatment plan. It's been the longest 2 weeks of my life; just 6 more days to go. He has an appointment with the pulmonologist tomorrow, and I'm so glad I'm going with him. He and I are coping very differently. I MUST research and learn as much as I can about the disease in all its forms so I can understand when the Drs talk with us. It's not an option for me not to research, and I refuse to let myself be scared by the grim prognoses I run into. It's a double edged sword, to be sure. I'd rather know the facts and wait to fully freak out until the Drs. give staging etc. My husband, however, is profoundly uncurious. It's crazy to me, but we all process differently. I'm hoping the pulmonologist (the appointment was made long before the CT scan) will have more details about the CT and X-rays my husband had. My husband can't remember what the Drs. said at the time and frankly he's not as clued in to the details at this point as I am. His tumor is 8cm and had lymph node involvement. However I'm unclear whether there is mediastinum involvement or not, which could make a big difference in staging - possibly? I'm getting slightly conflicting information on staging parameters. Some seem to indicate automatic stage III because of the size (>7 cm), but others really emphasize mediastinum involvement as the main characteristic of stage III. Regardless, I think the best we can hope for is IIB. I'm not sure if it's all in my head, but could his symptoms already be getting worse in just the 2 weeks since his CT? Not sure if he's sleeping more because of the depression and stress of the waiting or because of disease progression. His cough seems a bit deeper, but the real worry for me is his waning appetite. It's nothing drastic, just noticeably less. While my research has uncovered some scary stats, I've taken heart from you all. Immunotherapy and the new treatments have radically changed the lung cancer landscape, so I'm clinging to hope that whatever it is that's growing inside my husband is very responsive to these new options. Hoping also for clear PET and MRI signs showing NO metastases. These are my prayer petitions. Again, thank you for your knowledgable and compassionate support!~KG

Wow. What a difference a few days can make. Thursday my husband disclosed that laat week he’d finally gone to the Dr about his chronic cough and had been referred for an immediate CT scan after 2 troubling xrays. Friday morning the oncologist called to say the mass in his lung appears to be cancer. Cue the plunge into the research vortex, the anxious waiting for the staging process to be accomplished, and the hard conversations with loved ones where you say, “not looking good” but have no real answers to their question “how scary is this this?” Glad I found this forum! I’ve already read through a couple of very helpful articles and was able to exhale a bit. Thank you for the timely and knowledgable support you provide to patients and caregivers!