Tom Galli

June,
What a terrible journey you are on!  I only had some drugs in 2010 (colon cancer), my lung cancer treatment (up to now) was only surgical.  I know there are others taking similar drugs as you and I look forward to their experiences here as perhaps they may help you to find some symptom relief as well as knowledge to help you get through this.  My prayers for you are to receive the benefit of the drugs with few or no side-effects.  I realize that is a big ask with some of these treatments and I also realize that everyone reacts to them differently.  I have taken Tramadol for kidney stones and I agree that it only does "take the edge off".  I understand that the normal pain protocol is the lowest dose that achieves a reasonable pain reduction, but if you need something more in order to rest (a pretty important component of your recovery) then please speak up and let the doctors know that.  Please continue to keep us updated.  I'm hoping to see a future post where you are doing better on all fronts.

Lou

Hello everyone! Sorry I’ve been away so long. I hope everyone enjoyed their holidays and hope you are all doing as well as possible in your cancer journeys.
The last time I posted I believe I was quite excited over the discovery of my ROS1 mutation. I was so happy to have targeted therapy options! It sounded so much easier than chemo. Just take some pills every day, they said. It will be great, they said! Little did I know I was just in for a different sort of roller coaster ride. Everyone is unique, and unfortunately my body does not seem to like these ROS1 drugs at all!
The first drug recommended to me was Entrectinib. I started taking it in early October. On my first attempt I ended up in the emergency room with a severe allergic reaction in the form of a nasty, rapidly spreading rash with fever, etc. Had to come off the drug & take steroids to resolve the rash & recover. After that we tried the drug again at one/third of the regular dose, which is the normal protocol. Within a week I had to be admitted to the hospital with a DILI - Drug Induced Liver Injury. My Alanine Aminotranferase enzymes were 2,500! (Normal is 52). I Was in hospital 3 days before my numbers started to come back down. Now that drug is off the table and no longer an option for me.
Luckily by mid-December my liver had healed itself & was completely back to normal. During all this waiting I had some minor progression though, which is always worrying. I have since received approval to try a new TKI designed for ROS1 patients called Repotrectinib. It was just recently approved by the FDA and is supposed to be not quite as harsh as the first drug I took.
This is day 18 for me on the newer drug. So far my liver is tolerating this one (major relief!) but it has been a rough ride. I am in so much pain! First week was ok, but 2nd week brought extreme fatigue, fevers, & terrible pains in my hands, feet, ankles, knees, etc. The pain is worse at night - almost unbearable at times. We’ve already cut my dosage in half but no relief yet. Most people say the pain & other side effects of Repotrectinib ease up in a few weeks as your body gets used to the drug. I sure hope that is true! Since they are so worried about my liver sensitivity, I have to be very careful about using painkillers. We don’t want to do anything to aggravate the liver again. I feel like I’m in some sort of nightmare. I can’t let this drug fail or the cancer will keep progressing! I’m just slowly eking through each day, trying to get through the pain & fevers. Hoping that one day I’ll wake up & things will be better. Next appointment is this Thursday. I wonder what they will recommend. I have a Cymbalta prescription but have been afraid to try it due to the harsh liver warnings it contains. I’ve started taking a Tramadol to get through the night but it just takes the edge off & doesn’t really stop the pain. This seems like nerve pain so I suspect the Cymbalta might work better. Has anyone here used that? Just trying to stay strong and tough it out in hopes that I can eventually tolerate this drug. And praying that the drug puts a stop to my cancer growth! My ROS1 group has countless stories of folks who have taken this drug for months and even years with good results & no ill effects. My dream is to be one of them some day!
Take care all! - June

Cara,
I am sorry. I guess I am fortunate enough to survive so long that I've outlived the Google site that held the summation of my treatment history. Here it is, in brief.
Diagnosed February 4, 2024, stage IIIB, non-small cell, squamous cell, lung cancer. First-line treatment: 30 sessions of fractional general radiation to the large tumor (about 4" long and 3/4" in diameter) completely filling the main stem bronchus of my right lung. Adjuvant weekly taxol and carboplation, 6 infusions in total. Result: no evidence of disease (NED) scan after treatment. The objective of first-line was to shrink the tumor allowing the surgeon to remove my right lung. We decided we'd proceed with surgery. Second-line treatment: Open thoracotomy resection of my right lung. A week after surgery, I developed a fistula leak in the sutures of the bronchus stump. This required two follow-up surgeries to repair the fistula and 3 stent insertions. Time-wise, almost a year's worth of surgery and recovery. The first CT scan after surgical recovery showed 3 tumors in my left lung. Third-line treatment: 6 cycles of taxol and carboplatin chemotherapy with an infusion every 3 weeks. The 3-month post-treatment scan showed NED but the 6-month scan showed two of the tumors returning. Fourth-line treatment: 6 cycles of taxol and carboplatin adding the targeted therapy drug Tarceva. Tarceva is now given as a targeted therapy for certain forms of adenocarcinoma. At the time I was given this drug, doctors didn't realize the limitations of the drug. All that was known was the drug worked for a small population of lung cancer patients. Again, I had a NED scan after treatment but my 6-month scan showed a single tumor recurrence. Fifth-line treatment: A CyberKnife precision radiation (SBRT) treatment for the persistent tumor in my right lung. 3 months after this treatment, I had a NED scan (June 2007) and I've been NED ever since. Sorry about using the term tumors to describe your husband's situation. The size you report puts them clearly in the nodule classification.
Stay the course.
Tom

Cara,
I am sorry. I guess I am fortunate enough to survive so long that I've outlived the Google site that held the summation of my treatment history. Here it is, in brief.
Diagnosed February 4, 2024, stage IIIB, non-small cell, squamous cell, lung cancer. First-line treatment: 30 sessions of fractional general radiation to the large tumor (about 4" long and 3/4" in diameter) completely filling the main stem bronchus of my right lung. Adjuvant weekly taxol and carboplation, 6 infusions in total. Result: no evidence of disease (NED) scan after treatment. The objective of first-line was to shrink the tumor allowing the surgeon to remove my right lung. We decided we'd proceed with surgery. Second-line treatment: Open thoracotomy resection of my right lung. A week after surgery, I developed a fistula leak in the sutures of the bronchus stump. This required two follow-up surgeries to repair the fistula and 3 stent insertions. Time-wise, almost a year's worth of surgery and recovery. The first CT scan after surgical recovery showed 3 tumors in my left lung. Third-line treatment: 6 cycles of taxol and carboplatin chemotherapy with an infusion every 3 weeks. The 3-month post-treatment scan showed NED but the 6-month scan showed two of the tumors returning. Fourth-line treatment: 6 cycles of taxol and carboplatin adding the targeted therapy drug Tarceva. Tarceva is now given as a targeted therapy for certain forms of adenocarcinoma. At the time I was given this drug, doctors didn't realize the limitations of the drug. All that was known was the drug worked for a small population of lung cancer patients. Again, I had a NED scan after treatment but my 6-month scan showed a single tumor recurrence. Fifth-line treatment: A CyberKnife precision radiation (SBRT) treatment for the persistent tumor in my right lung. 3 months after this treatment, I had a NED scan (June 2007) and I've been NED ever since. Sorry about using the term tumors to describe your husband's situation. The size you report puts them clearly in the nodule classification.
Stay the course.
Tom

Cara,
Tom is the "Survivor" who wrote the blog "10 Steps to Surviving Lung Cancer, From a Survivor".  When you review his history you can see why I recommend it to all newcomers to our forum.  His original diagnosis was 20 years ago, his treatments were so varied, he suffered numerous recurrences, and yet he is still here living life.  Not everybody is a "Tom", but our forums are replete with many survivors, and I look forward to your husband joining that group.
Lou

Sue,
Treatment at Mayo is a good call. Brain mets are complicated and an experienced treatment team is warranted. I am praying for a good outcome.
Stay the course.
Tom

Sally,
Oh my, you've had a hard row to hoe!
When my phlegm turns dark, my medical oncologist tells me to start Levaquin antibiotics and seek a physician appointment pronto. Dark phlegm is an indication of infection and it could be viral or bacterial. The Levaquin addresses the latter. An infection could also explain your passing out. Even a mild infection, given your chemotherapy, will cause extreme weakness.
I'd see your GP and report these symptoms.
Stay the course.
Tom 

Cara,
Your husband has a complicated case.
I've read all your posts and understand the confusion. Basically, the biopsy doesn't confirm the PET SUV. SUV of about 3.5 can be typical of inflammation, but the 6.7 value is well above the inflammation response -- this indicates metastatic activity. Here is something I wrote a while ago explaining PET scans and SUVs.  
We all are afraid of surgery. I had 3 open thoracotomies in my treatment history and yes I've had SBRT. It was my curative therapy and my last of 5 lines of treatment. SBRT can substitute for surgery. In fact, given that your husband has tumors in both of his lungs, SBRT might be the better treatment.
Here are my ideas. Repeat the PET scan and then repeat the needle biopsies. Yes, biopsies are the "gold standard" in identifying lung cancer but sometimes a needle biopsy misses. If you decide to use SBRT, ensure you consult with a medical oncologist to have adjuvant chemotherapy after radiation treatment. Lung cancer in any presentation has a high probability of recurrence and given tumors in both lungs, you want to do everything you can to avoid a recurrence. Chemotherapy is inconvenient but it is minor indeed compared to a recurrence.
Stay the course.
Tom

With a heavy heart, i'm letting the world know that JimsMNL died Dec 3rd.  
Im telling anyone who will read this, FIGHT like hell.
P.S.  F..K cancer...

Sue,
I'm glad that you're getting the help and support you need.  I look forward to hearing that treatments are applied and the situation improves.  Know that you are in our prayers.
Lou

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.

Wow!!! Another Birthday. I turn 65 years old.                          Time to Retire!!!! Not from work as I love working and it keeps me driven daily.  However there are so many other things I want to retire from. I want to retire from any negative people who have difficulties recognizing the real essentials of life and how too acquire them. I want to retire from the negative people who fail to recognize the good in people and can only see others weakness. I want to retire from the people that like to think that they need material things to feel complete and have the inability to understand you can't take materials with you when you go. I want to retire from the list of things I don't want to do and create a new list of things I really would like to do.

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. 

Hi Sue,
I don't know exactly what treatment you've been getting, but a hard reality of our disease is the high recurrence rate.  I have a team that consisted of a pulmonologist (first found my cancer), surgeon (who performed my lobectomy), and an oncologist (who I look to for overall direction and treatment).  Your oncologist can work with you to decide if any additional testing is needed and then the best treatment to pursue.  He may present your case for a peer review or speak with others for additional input, but those are good things to have happen.  I've seen/read from a number of folks on this forum who have had brain mets treated with radiation (e.g., gamma knife) with excellent outcome.  In preparation for your meeting write down any question you may have about any aspect of the upcoming treatment, and bring along someone who can take some notes for you.  I remember going to appointments where I was so upset that I Hardly remembered what the doctor had told me once I left.
My prayer is for you to find another treatment that is effective.  Please update us once you learn more about what will come next.
Lou

Maciek,
I'm sorry to hear about your brother, but glad that you found us.  Others will be able to provide more information on targeted therapies than I can as my lung cancer was treated surgically in 2019.  It was stage I and my scans have been NED (No Evidence of Disease) since that time.  I may not have experience with the treatments you describe but I'd like to provide some information you may want to share with your brother.
First is a blog titles "10 Steps To Surviving Lung Cancer, By A Survivor".  This was written by a member who was diagnosed at Stage III, then went to Stage IV and over 18 years later he was declared "Cured".  That article can be found here. Next is a section of our website titled "Lung Cancer 101" and iti contains a wealth of information on causes, diagnosis, and treatments for Lung Cancer.  You can find that section on this page. Finally, as someone who is going to be caring for your brother I thought you might benefit from looking at our "Caregiver Resource Center" which is found at this location.f In closing I can also tell you this...while Lung Cancer is the most deadly of cancers and shows high recurrence there are a number of survivors here who had Stage diagnosis similar to your brother who are still doing well years after diagnosis.  I pray the same for your brother and hope that you'll continue to delve into our website and learn all you can to better support your brother.  It would also be good for him to connect with some of the great survivors here so he can learn that his diagnosis is not the automatic death sentence it was years ago.  Progress is being made at a steady pace and new treatments are available even since my diagnosis four years ago (soon to be five).  
Lou

Hallo my name is Maciek.
I'm from Poland, my brother was diagnosed on September 11th 2023 with IV stage nsclc and few brain metastases. 
After two gamma knife, he started therapy with gavreto (pralsetinib) on 1st of November. He is doing very well, no side effects, no recogniseble signs of progressing cancer - scans are scheduled for mid January. 
I hope to get samo informations and tips from all of you and share our experience. 
I'm the most interested in ways of getting rid of the primary tumor after significant shrinkage caused by TKIs. I hope shrinkage will occur....

I'm glad to hear that there are no signs of malignancy.  Since you have some time before the surgery how do you feel about going to get a second opinion?  Having had cancer-related surgery twice I don't take any surgery lightly and it might be good to have another review of the data and confirm that your surgeon is on the best course for your situation.
Whatever you decide I wish you a great New Year and continued good news from any tests you have.

Lou

Met with the Thoracic surgeon last Friday to discuss the results of my ct scan and biopsy. The ct scan shows no change from the one that was done in October. The biopsy didn’t show any malignancy or infection which is a relief. However, she said that the fact remains that there is something there that isn’t normal. She recommends removing it. She said it’s the only way to be 100% sure of what it is, or isn’t. We discussed waiting until early April and doing another CT scan and if there’s any change then go ahead with the surgery. I feel comfortable with that. She did say if I changed my mind and want to go ahead with the surgery sooner to just call her and she’ll get it scheduled. My husband would like me to have the surgery sooner rather than later but is going along with my decision to wait until April.  So that’s where I’m at for now. 
Hope everyone has a good New Year’s and that 2024 bring good things to all.

Karen,
What a great thing to celebrate.  Enjoy each and every day.  I wish you many, many more of them.
Lou

Wonderful news Karen! Enjoy the rest of the holidays and a great new year.

Karen
What a relief indeed best holiday gift ever. I'm so happy for you.
Chuck

Woo hoo! So glad to hear this!

Had scans on Friday afternoon. The results showed up in my chart a couple of hours later: No nodules, no lymph node issues, stable post treatment scarring in treated area of lung, no recurrence. 
What a relief. This scan was higher on the anxiety scale for me, for whatever reason.
After I read the report, I realized I can be more intentional in how I choose to spend my days. It's so easy to take living for granted....
Oncologist tomorrow, then a respite. 
Karen

I am having a ct scan then lung biopsy on Monday morning. Have come up with a million reasons to put it off but I know it’s the right thing to do so I’ll be at the hospital at 8:15 am Monday morning. I’m nervous about the procedure but I’ll get through it with flying colors I’m sure. Should have the results by the end of next week. Having our family Christmas party at our house on Sunday so the preparations and party will keep my mind occupied which is a good thing.

Good for you for taking care of yourself. Here's hoping things go smoothly for the biopsy and that the waiting is endurable.