Good Bro Posted July 1, 2021 Share Posted July 1, 2021 First time posting... My brother, who is in his late 40's, was diagnosed with mNSCLC about a month ago. Unfortunately, he didn't have any of the bio markers evident from his biopsy. Even though it has spread to his brain, the docs have decided to start the chemo/immuno treatments (Triplet, I believe) before doing any radiation for the brain tumors. They are hoping the chemo may eliminate the numerous very small brain lesions so that they can treat the couple larger ones with targeted radiation and not have to conduct a WBRT. Can't believe he has to deal with this late-stage cancer after being a survivor of Hogkins Lymphoma about 25 years ago. Praying that this Triplet concoction performs well for him and he will eventually be able to hear the doctors report... NED!!! Link to comment Share on other sites More sharing options...
Tom Galli Posted July 1, 2021 Share Posted July 1, 2021 Welcome here Good Bro and encourage your brother to joins us, or at least read the vast amount of information on this forum for hope and insight. A triplet or combination chemotherapy with immunotherapy can be very effective in stopping progression and even reducing tumor size or eliminating them. So thankfully, there are folks here who have benefited from that therapy and can chime in. Precision radiation to zap large tumors is pretty common in our disease and thankfully it is a very, very effective treatment method. I know folks who've had WBRT and it eliminated the very small tumors without adverse neurological problems. Of course, I know those who've had the treatment without benefit and with problems. So, we are all hoping the triplet deals with the many little nodules so the bigger ones can be zapped! In the meantime, pass this to your brother. I share it with the newly diagnosed as survival tips and tricks. Stay the course. Tom Link to comment Share on other sites More sharing options...
Good Bro Posted July 2, 2021 Author Share Posted July 2, 2021 Thank you Tom. Yes, I have shared this forum with him, his wife, and our parents. The real-life accounts shared on here really boosted the family's hope for him and really got him in the offensive attack mindset instead of just the defensive side. The only thing I don't understand in his treatment plan with holding off on the brain radiation is that most of what I read states that most chemo drugs don't make it past the blood-brain barrier and therefore don't do much for brain mets. Also, how quickly do the brain mets grow? Basically, it is going to be 6+ weeks before they even retake more scans to see if the chemo did do anything for the brain mets. If they find that it hasn't done anything for those mets, then it will be 8+ weeks from brain met diagnosis to the first radiation treatment to address them. Just seems long. I know this stuff takes time but we all know that it (time) is the one thing that patients with this nasty disease might not have on their side. Link to comment Share on other sites More sharing options...
Tom Galli Posted July 2, 2021 Share Posted July 2, 2021 Good Bro, You haven't mentioned the names of his triplet drugs. Some are formulated to negotiate the blood-brain barrier, and I can't imagine a medical oncologist designing a first line treatment that did not pass the blood-brain barrier for your brother. Let us know the names of his chemo drugs and we can do some research. How fast do tumors grow? That is impossible to answer. The variables are the type of lung cancer, each individuals physiology, the response to chemo to name a few. For example, I was diagnosed with squamous cell non small cell lung cancer with a tumor sized at 7 cm by 2.5 cm completely filling my right lung's main stem bronchus. A month prior, I had an x-ray that showed nothing of interest. Squamous cell is supposed to be slow growing, and a tumor that large would have normally shown on an x-ray. But, I view your brother's treatment plan as a good one. It has a high probability of success in reducing the size or eliminating tumors in the brain setting up the surgical-like precision radiation to zap those that remain. And, it avoids the potential neurological side effects of WBRT. Moreover, if needed, WBRT might be able to be administered after precision radiation. So, in terms of killing cancer, I think your brother's doctor has the right approach. Waiting is lung cancer's special kind of hell. We wait for scans, then treatment, then repeat scans. We wait for results after scans. We often experience depression. I call this Scanziety, and wrote a book about it. Watch for signs of depression; men often hide it. I did and had a very dark hole to climb out of. Stay the course. Tom Link to comment Share on other sites More sharing options...
Good Bro Posted July 6, 2021 Author Share Posted July 6, 2021 Thx Tom. He has a lot of close family helping him out and constantly doing things to keep him out of that dark area. He seems really positive most of the time but as you mentioned, men often hide or even disguise it sometimes. My brother and I are really close and I would hope that I would be able to recognize it. As for his drug combo, I'm not 100% certain (as he isn't either, at least when he talks about it). I know the Keytruda is one and I believe that Cisplatin may have been another. I will see if I can get all the info from him. He had the 18-24hr crash which started 2 days after his treatment. Feels better now though and he said that something feels different in his chest. Can't say it feels "better" but definitely different. He's not sure if that's good or not. My wife's cousin lost her battle with SCLC only 5 months after diagnosis. She was in her mid-50's. This was just a few years back and so my family (including my brother) remember this vividly and it may be driving more sadness than hope is his situation. We know though that SCLC is worse than NSCLC, even in the later stages. These forums though really show how there isn't just hope but how the odds actually seem to be turning in favor of the patient to become a really long term survivor. Wondering from this group though how realistic the newer Brain Mets GPA Index used to generate a general prognosis is? Supposedly, this indexing takes into account the presence of bio markers (at least the EGFR & ALK ones) and the success of the approved treatments for them. Link to comment Share on other sites More sharing options...
Good Bro Posted July 6, 2021 Author Share Posted July 6, 2021 Sorry, I believe it is the Carboplatin. I wrote Cis instead of Carbo. Thinking the 3rd drug is the Altima but need to confirm that one. Link to comment Share on other sites More sharing options...
Tom Galli Posted July 6, 2021 Share Posted July 6, 2021 Good Bro, Wow--Brain Mets GPA Index! That represents some deep research into our disease and while the research is good, we sometimes lose sight of what prognosis predictions are--predictions garnered from statistical projections. I wouldn't know what the index takes into account but regardless, human to human variation represents so much uncertainty that I put little faith into prognosis or survival projections. Why? Read this and listen to the linked scholarly essay of Stephen J. Gould about statistically-based survival projections. If his drugs are Carboplatin and Altima, then his immunotherapy drug should be Keytruda and if so, this can be very effective in knocking down lung tumors. On the topic of biomarkers, consider they point to Targeted Therapy treatment, but your brother is having Immunotherapy so the presence of Targeted Therapy markers (ALK, EGFR and so on) really don't enter the picture in your brother's treatment regime. And you are right, for NSCLC patients, the odds are turning given new Immunotherapy, Targeted Therapy and precision radiation. Small cell lung cancer, however, remains a very tough nut. Tell your brother to... Stay the course. Tom Link to comment Share on other sites More sharing options...
Good Bro Posted July 9, 2021 Author Share Posted July 9, 2021 I did confirm that his treatment drugs are the Carboplatin, Altima, Keytruda triplet. I do understand that Targeted Therapy is not part of the treatment regime. Really can't be since no biomarkers were detected. Had biomarkers been detected, they likely would have used Targeted drugs as the first line treatment (their words). I did find out that his PD-L1 expressions was "negative (1-49%)" and his type is nonsquamous. His next (2nd) treatment is the 22nd. Then they will take new scans sometime after that. His cough, fatigue, and shortness of breath, along with a little chest pain, are his main symptoms and as sounds quite common, he has his good days and bad days. Overall though, the symptoms seem to be slowly worsening. Link to comment Share on other sites More sharing options...
Tom Galli Posted July 9, 2021 Share Posted July 9, 2021 Good Bro, It is not uncommon for symptoms (cough, fatigue, SOB) to worsen after starting first line chemo. And he will, unfortunately, have good and bad days. But his system is under assault from very powerful drugs that can kill cancer but also can cause some pretty adverse reactions. For example, his bone marrow is likely going into overdrive to produce red and white blood cells that chemo, unfortunately, is assaulting. A scan after second treatment is fantastic. Most of us get scans after the midpoint of our treatment so for a 6-cycle course of treatment, we'd have a scan after the 3rd cycle. Stay the course. Tom Link to comment Share on other sites More sharing options...
Good Bro Posted July 27, 2021 Author Share Posted July 27, 2021 My bro received his second round of the triplet infusion last week with nearly no noticeable side effects this time. The doc did prescribe some steroids for him to take for a few days post treatment. Seems to have worked quite well. He mentioned to me that he thinks he is actually noticing that the treatments may be working. The nagging headaches are subsiding (hopefully that means the brain mets are shrinking), he isn't getting quite as fatigued, and the cough and pains are noticeably better (not gone but better). Doesn't seem to be any increase in his lung capacity yet though. Still gets out of breath quickly. His next CT and MRI scans will be in 3 weeks with another treatment scheduled a couple days after the rescans. Really hoping to see some reduction in the number of brain mets present so that he may be able to get some targeted radiation instead of WBRT. He really wants to get back to driving but the docs won't let him with the presence of the brain mets. Link to comment Share on other sites More sharing options...
Tom Galli Posted July 27, 2021 Share Posted July 27, 2021 Good Bro, Your brother is experiencing many of the symptoms associated with the Triplet. We also hope the drugs dramatically reduce the number of brain mets thus allowing targeted radiation. And, driving with brain mets is not a good idea. Stay the course. Tom Link to comment Share on other sites More sharing options...
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