Sue BB

My apologies to all you wonderful people. It has taken me some time to find this forum again after struggling with feeling crappy for nearly 6 months. My trip to Mayo was indeed a whirlwind after the discovery of five tumors in my brain, thanks to my lung cancer spreading. In one day I was diagnosed - had a genetic test and discovered the Kras gene was mutated and then I had gamma knife surgery on my tumors. I just got back from Mayo a couple of weeks ago and the tumors are disappearing…. One was nearly an inch or so long. I’m currently taking a targeted drug which had left me helpless with nausea and fatigue. They lowered the dose and I’m tolerating it better. I cannot do what I used to so I am modifying my life every so slowly. Old habits die hard. I was posting my blog on this site, but the whole story is at https://indychildren.blog/blog/

My apologies to all you wonderful people. It has taken me some time to find this forum again after struggling with feeling crappy for nearly 6 months. My trip to Mayo was indeed a whirlwind after the discovery of five tumors in my brain, thanks to my lung cancer spreading. In one day I was diagnosed - had a genetic test and discovered the Kras gene was mutated and then I had gamma knife surgery on my tumors. I just got back from Mayo a couple of weeks ago and the tumors are disappearing…. One was nearly an inch or so long. I’m currently taking a targeted drug which had left me helpless with nausea and fatigue. They lowered the dose and I’m tolerating it better. I cannot do what I used to so I am modifying my life every so slowly. Old habits die hard. I was posting my blog on this site, but here’s my journey all at once. I hope I never have to have gamma knife again…. It was quite the experience.

My apologies to all you wonderful people. It has taken me some time to find this forum again after struggling with feeling crappy for nearly 6 months. My trip to Mayo was indeed a whirlwind after the discovery of five tumors in my brain, thanks to my lung cancer spreading. In one day I was diagnosed - had a genetic test and discovered the Kras gene was mutated and then I had gamma knife surgery on my tumors. I just got back from Mayo a couple of weeks ago and the tumors are disappearing…. One was nearly an inch or so long. I’m currently taking a targeted drug which had left me helpless with nausea and fatigue. They lowered the dose and I’m tolerating it better. I cannot do what I used to so I am modifying my life every so slowly. Old habits die hard. I was posting my blog on this site, but the whole story is at https://indychildren.blog/blog/

My apologies to all you wonderful people. It has taken me some time to find this forum again after struggling with feeling crappy for nearly 6 months. My trip to Mayo was indeed a whirlwind after the discovery of five tumors in my brain, thanks to my lung cancer spreading. In one day I was diagnosed - had a genetic test and discovered the Kras gene was mutated and then I had gamma knife surgery on my tumors. I just got back from Mayo a couple of weeks ago and the tumors are disappearing…. One was nearly an inch or so long. I’m currently taking a targeted drug which had left me helpless with nausea and fatigue. They lowered the dose and I’m tolerating it better. I cannot do what I used to so I am modifying my life every so slowly. Old habits die hard. I was posting my blog on this site, but here’s my journey all at once. I hope I never have to have gamma knife again…. It was quite the experience.

Thank you. I decided to go to Mayo, and wow things have been happening fast, we are leaving today for the first five appointments. I do have radiation schedule here next week, but I will forgo that as I am meeting with a neurosurgeon, oncologist and radiologist plus one more doctor I cannot recall at the moment. I’m terrified at the prospect - my balance is so bad I fell into a wall and stubbed my toe. My husband thought something happened to me the next day as I left a trail of blood from the bathroom to the bed. Kinda funny. The black and blue mark by my left breast not so funny. I could have nailed my port and then ugh. We are going to do some genetic tests, and I heard that the peeps in Mayo may have some new technologies for me. I hope so. I have a pit in my stomach and my children are really worried. Thanks for keeping in touch. I need the connection.

Thank you. I decided to go to Mayo, and wow things have been happening fast, we are leaving today for the first five appointments. I do have radiation schedule here next week, but I will forgo that as I am meeting with a neurosurgeon, oncologist and radiologist plus one more doctor I cannot recall at the moment. I’m terrified at the prospect - my balance is so bad I fell into a wall and stubbed my toe. My husband thought something happened to me the next day as I left a trail of blood from the bathroom to the bed. Kinda funny. The black and blue mark by my left breast not so funny. I could have nailed my port and then ugh. We are going to do some genetic tests, and I heard that the peeps in Mayo may have some new technologies for me. I hope so. I have a pit in my stomach and my children are really worried. Thanks for keeping in touch. I need the connection.

Hi Ellen,
Sorry you need to be here, but glad you found us.  You're in a good place we have people with all stripes of LC (lung cancer) and who were diagnosed at all stages and many are still surviving and living their lives.  First I'd like to share some items for you to begin to your important education as well as tips on how to survive with LC.
The author of this article was diagnosed 19 years ago at Stage 3 and then it went to Stage 4 and he lives today and is one of our senior members.  Please read "10 Tips to Surviving Lung Cancer; From a Survivor" Next, from our "Lung Cancer 101" section is something I wish I knew when I was going through my early part of the journey "What to Ask Your Doctor".  So often, in the beginning, we are emotional we don't yet know enough to ask the questions that should be asked.  This will help you out there. Finally, "Lung Cancer 101" this covers everything from testing, diagnosis, to treatments of all kinds and covers a number of situations that can arise. I realize I'm giving you a lot of information to look at, but in the case of LC "information is truly power" and we need all we can get.  The last thing I'll leave you with is not to consult with "Dr Google" regarding prognosis and outcomes.  Much of the data you'll find is averaged over a number of years and does not reflect all the latest treatments nor does it consider the individuality of your particular case of LC.
Stay strong, know that you are not alone and ask any questions you have.  You'll find that you've come to a wonderful community of people.
Lou

I just had an MRI after experiencing two weeks of increasing vertigo. It shows five tumors in my brain as my lung cancer has metastasized. One is nearly an inch long. How do I deal with that and who do I seek for advice. I will be seeing my oncologist at 8 a.m. tomorrow morning for next steps. I was feeling so good and so hopeful until my last infusion on the 19th of December. 

Well, this week is finally over. Five medical appointments. Bread and popcorn ball orders. Thanksgiving buns and mashed potatoes…. Market on Saturday. Whew. I am leaving for my daughter’s house on Sunday with my granddaughter. I can’t wait to spend some days with their new baby. As far as my scan. “No new or worrisome pulmonary nodules/masses.” is the long story short. There is some cloudiness and ground glass in the right lung. The doc is thinking its scar tissue or side effects of Imfenzi. We are monitoring my oxygen levels and of course I have some eczema on my hands. So I’m trying to keep them lotioned up. It’s not easy when you are baking all day. But thank you all for being here. HAPPY THANKSGIVING, I got more living to do.

For some reason, I am anxious about my upcoming CT scan. More so that the first one three months ago which showed “marked” improvement in my SUV. I’m so praying for more shrinkage, but there’s always that doubt in the back of mind. I just had to get this off my chest so I can enjoy the weekend. I hope anyway. I’ll let you all know what happens. Cause what happens if it comes back so soon after treatment? Thanks for listening.

Well, this week is finally over. Five medical appointments. Bread and popcorn ball orders. Thanksgiving buns and mashed potatoes…. Market on Saturday. Whew. I am leaving for my daughter’s house on Sunday with my granddaughter. I can’t wait to spend some days with their new baby. As far as my scan. “No new or worrisome pulmonary nodules/masses.” is the long story short. There is some cloudiness and ground glass in the right lung. The doc is thinking its scar tissue or side effects of Imfenzi. We are monitoring my oxygen levels and of course I have some eczema on my hands. So I’m trying to keep them lotioned up. It’s not easy when you are baking all day. But thank you all for being here. HAPPY THANKSGIVING, I got more living to do.

Sue
Enjoy the time with your family i am looking forward to that myself. Have a great Thanksgiving 
Chuck

Well, this week is finally over. Five medical appointments. Bread and popcorn ball orders. Thanksgiving buns and mashed potatoes…. Market on Saturday. Whew. I am leaving for my daughter’s house on Sunday with my granddaughter. I can’t wait to spend some days with their new baby. As far as my scan. “No new or worrisome pulmonary nodules/masses.” is the long story short. There is some cloudiness and ground glass in the right lung. The doc is thinking its scar tissue or side effects of Imfenzi. We are monitoring my oxygen levels and of course I have some eczema on my hands. So I’m trying to keep them lotioned up. It’s not easy when you are baking all day. But thank you all for being here. HAPPY THANKSGIVING, I got more living to do.

Well, this week is finally over. Five medical appointments. Bread and popcorn ball orders. Thanksgiving buns and mashed potatoes…. Market on Saturday. Whew. I am leaving for my daughter’s house on Sunday with my granddaughter. I can’t wait to spend some days with their new baby. As far as my scan. “No new or worrisome pulmonary nodules/masses.” is the long story short. There is some cloudiness and ground glass in the right lung. The doc is thinking its scar tissue or side effects of Imfenzi. We are monitoring my oxygen levels and of course I have some eczema on my hands. So I’m trying to keep them lotioned up. It’s not easy when you are baking all day. But thank you all for being here. HAPPY THANKSGIVING, I got more living to do.

Hi, Sue.
What happens if it comes back so soon after treatment? You take the next step. And tell us about it!
Karen
 
 

For some reason, I am anxious about my upcoming CT scan. More so that the first one three months ago which showed “marked” improvement in my SUV. I’m so praying for more shrinkage, but there’s always that doubt in the back of mind. I just had to get this off my chest so I can enjoy the weekend. I hope anyway. I’ll let you all know what happens. Cause what happens if it comes back so soon after treatment? Thanks for listening.

Sue,
We call the pre-scan jitters "Scanziety".  It's perfectly normal and we all have a reason to experience it.  I've been "clean" (NED), for 4 years and in the beginning I was always worried about recurrence.  Thank God, that never happened, so instead I worry about my body making a new cancer.  You see I was diagnosed with colon cancer in 2010 and then lung cancer in 2019. I used to live my life waiting for the "other shoe to fall" but after spending time with my Lungevity Family I've come to realize that I just need to live my life and enjoy the time I have regardless of how long it is, so my days are much better than they used to be.  But...even with my healthier attitude on life and cancer I can still get anxious about my scans.  Just know that you have a whole group of folks here that are hoping, and praying for your scans to be the good news you want them to be.  Please keep us updated.
Lou

Strangely enough we are leaving for Cancun on Saturday, Nov. 4 and upon my return my second CT scan since radiation ended in April. I would sure love to meet NED. 

Strangely enough we are leaving for Cancun on Saturday, Nov. 4 and upon my return my second CT scan since radiation ended in April. I would sure love to meet NED. 

Strangely enough we are leaving for Cancun on Saturday, Nov. 4 and upon my return my second CT scan since radiation ended in April. I would sure love to meet NED. 

Thank you so much, I am so grateful to have found this group. No one seems to understand that even if I look okay on the outside, that doesn’t mean I don’t think about what’s going on inside my lungs. I am on ‘Empenzi  and so far, very little side effects. I will take a look at those links - I already feel more hopeful about my situation.

Thank you so much, I am so grateful to have found this group. No one seems to understand that even if I look okay on the outside, that doesn’t mean I don’t think about what’s going on inside my lungs. I am on ‘Empenzi  and so far, very little side effects. I will take a look at those links - I already feel more hopeful about my situation.

Thank you so much, I am so grateful to have found this group. No one seems to understand that even if I look okay on the outside, that doesn’t mean I don’t think about what’s going on inside my lungs. I am on ‘Empenzi  and so far, very little side effects. I will take a look at those links - I already feel more hopeful about my situation.

I was diagnosed with stage 3b lung cancer in late January. I have completed treatment and seem to be responding well to the radiation and chemo. I am doing immunotherapy at the moment and trying to do what I do which is garden, farmers markets, write, take care of grandkids and take line dancing class. After completing treatment I decided it was time to write about my experience at a blog site I started a few years back at www.indychildren.blog. I have researched and written four books on the German Russian food and farms with focus on women. I do not have much of a support group in particular relating to lung cancer. It’s all breast cancer so I decided I could use a few friends.