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Golfman

small cell lung cancer and moved to brain as well

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I'm 75 and very active, mostly favoring golf while in Michigan from April-October. Experienced shortness of breath a few weeks ago, and after weeks of tests was diagnosed with small cell lung cancer in my right lung and a small (1/4") spot in my brain. Doctor detailed an extensive chemo plan and a radiation plan. The questions I have are numerous, but my main question is: Is all this treatment worth it? As my disease progresses toward my death, will these treatment plans prove to worth the efffort/expense?  It seems like my remaining days will be spent tethered to a medical office of some sort. Are there others out there, sort of near my advanced age group, who are/have faced similar circumstances?

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Golfman,

Welcome!

You are asking really tough questions.  First consider small cell lung cancer treatment has dramatically improved very recently. The two means that should interest you are precision radiation (you'll likely have a form called SBRT to deal with the brain met) and immunotherapy.  Here is information about precision radiation treatment for all types of lung cancer (including small cell).  Here is a very recent advance on adding the immunotherapy drug atezolizumab to the standard chemotherapy regime for small cell. So, for the first time in perhaps 3 decades, effective treatments are in play for small cell lung cancer.  Note also, precision radiation can also be used in place of surgery to address the tumor in your right lung. Be sure to ask your doctor about adding immunotherapy to your conventional chemo and addressing both the lung tumor and brain met with precision radiation.

We have small cell survivors on this forum who've been successfully treated.  I wouldn't know their ages.  I can't begin to answer if treatment is worth it for you. It was and has been for me.

Stay the course.

Tom

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So sorry to hear of your diagnosis and am sure you are struggling for answers to many questions.  My wife, now deceased, was diagnosed with small cell in June, 2017 and passed away 11 months later.  Starting out we knew the survival rates, once the cancer had spread, were really poor but we opted for the standard chemo therapy knowing that this was not a permanent solution but hoping some new effective treatment would emerge and potentially be effective for her.  She tolerated the standard chemo very well and did not cause suffering and she showed good improvement for three months and at the end of the six month treatment plan we were informed that the chemo treatments were no longer working (we knew that there was no permanent benefit from the chemo) and opted for an immunology drug called opdivo which she tolerated well but proved ineffective.  At that point she chose to discontinue treatment and go into hospice and she did not suffer.

 No one can tell you what to do.  I can say that I am sure her life was extended for several months, that she was able to enjoy family and friends up until her last week of life and the treatments were very tolerable.  I can also say that I know the chemo treatments are usually effective for longer period than what my wife experienced and pray there is now some better treatment available for you.

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My husband was diagnosed with sclc in February of 2018 (almost a year ago).  He had a couple of pretty large tumors in his right lung (inoperable) and lymph node involvement as well. He began chemo treatments a week after diagnosis and they used carboplatin and etoposide. He had 4 cycles that were 3 days each. Starting with his second cycle he also began radiation on his tumors. 30 treatments, 2 a day for15 straight days. Then had 10 low dose brain radiation treatments (PCI).  It all lasted from February to July of 2018. You are correct about the tethering statement as we have practically lived at the cancer center.  The cancer has now metastasized to his liver and he has undergone two more cycles of chemo now along with one of the new immunotherapy drugs, TECENTRIQ. He had 6 liver tumors which 4 are gone now and the remaining 2 are 50% smaller.  He has had TECENTRIQ 3 times and is tolerating it fairly well. They have now found a spot on his rib bone so have stopped chemo but are continuing Tesentriq and adding a drug called zometa for bone strength.  He will get scans every 2 months now instead of every 3 like he had in the beginning. The decision is ultimately yours and your family’s, of course, but we both would recommend you do treatments.  Our family has had the blessing of him still being with us for almost a year now, when it appeared to be a very grim situation in the beginning as I’m sure it is for you right now. It has been VERY hard on him (and me too) but would we take the same course again, knowing and going through what we have?  He and I both say yes!!!  I will tell you the honest truth.  He was hospitalized 3 times, low sodium, needing blood transfusions, and got sepsis on top of all that!  He’s always been a very strong man.  A brick mason.  A weaker person may not have been able to endure all that he’s had to endure and I really believe strength is important for these types of treatments. But, for any side effect, they usually have something that will help too though. It’s a very hard road to go down but I would recommend that you do it. Any extra time you get is a blessing and every day they are finding new immunotherapy drugs to help sclc.  Despite the extremely rough journey there is always hope. Everyone responds differently too so you could have an easier time of it than my husband has. Take care and the very best of luck to you. If you are near an MD Anderson facility, my husband and I would strongly recommend them too. I hope sharing his story has helped you.  Keep us updated.  

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Thank you, Pam and Ron. I'm very fortunate that people like you and others have taken the time to provide such invaluable insight. This really helps us with our decision, and even more importantly, reaffirms that there are such incredible people like you in this great country. I was given my diagnosis on Feb 14, and have to admit that everything the Oncologist said after her "2-4 months without treatment or 12 months with treatment" went over my head. I was numb. Luckily, my wife was there to keep me focused.  She tells me they will be including immunotherapy along with my chemo. We are scheduled to meet with a radiation oncologist on 2/18, and will proceed with treatment. My wife and I will now begin the long road living with this diagnosis. I will keep you posted on our journey. There are no MD Anderson facilities nearby, but we will be using Northwestern Medical, which is highly recommended.

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Thanks to advice from Tom, Ron and Pam, we are going forward with treatment. Thank you! We met with our Radiation Oncologist and plotted my treatment. Essentially, Etoposide and Carbolatin, in the same cycle as Pam mentioned, plus Atezolizumab (Tecentriq) as Tom and Ron mentioned.  We are awaiting approval from Medicare and our insurance company and will begin the process as soon as we get it. This Dr has given us some hope that I can at least survive the summer, and maybe even next summer too. Only God knows for sure, but I'm not gonna quit. Interesting point is  that this Dr has been working on a technique for brain radiation that minimizes the potential for memory loss. He's been speaking on the technique across the country. Got to admit, I get lost in all this stuff so when I understand better, I'll post it for all. So we've got some hope for a bit of normalcy. We can't thank you people for your encouragement! 

P.S. I think i should have posted all of this under the sclc forum

 

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Hi Golfman. 🏌️ 

You’re post is so inspiring!  Keep your faith & confidence as you move forward.  This group is great for being the safety net when you have an off day.  

My Dad has an anoxic brain injury almost 4 years ago which resulted in some memory loss. He wasn’t too worried about it.  He writes important things on a daily planner & has no problem keeping track of the golf tournaments (his criteria of very important).   Your medical team sounds awesome & prepared to provide you with high quality care.  

As we say in my adopted home state of KS- Carry On!  In NJ- Born to Run.  You’re off & running now.  

Hugs & prayers. 

Michelle

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Start round 1 of my chemo in an hour or so, beginning the healing process. Like most folks, I'm apprehensive, worried, scared, etc.  I know God's in charge here, I'm just following along. Just hope I'm strong enough to do so. I'll post more later. Peace to all.

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