SCLC brain metastases experience

[Bee_hopeful]

Dear All,

my Dad was diagnosed with stage IV SCLC in november 2020. He had chemotherapie in combination with immunotherapie (Tecentriq) and luckily had a subtotal remission in his PET-CT in march 2021. Until now, he gets Tecentriq every 3 weeks and is doing very well. Today he was diagnosed with 3 brain metastases on his routine MRI scan. He is so scared about what the metastasis and radiation therapy is gonna do to his brain function.

Does anybody has experience with this, which he/she might share? Which sort of radiation therapy is the best? Would gamma knife be an option? Does he has the chance to get rid of the brainmetastases?

Please excuse my english, I‘m writing from Germany.

With all my best wishes for all of you

Bee

[Tom Galli]

Bee,

Welcome here. No problem understanding your English. Your writing is much better than my GI German.

Let me sum up what you've told us. Your dad was diagnosed with SCLC in November 2020. His first line treatment was a combination conventional chemotherapy (common in the US is Cisplatin and Etoposide) and the immunotherapy drug Tecentriq. The addition of immunotherapy is a relatively new treatment modality in the US. Unfortunately, small cell has a disturbing tendency to metastasize to the brain. You mention 3 discrete tumors and this is far better than another common brain metastasis: many very small tumors throughout the brain.

In the US, a form of precision radiation is normally used to deal with "brain mets" as we refer to them. There are many types but all are characterized with radiating a very small precise area of the brain, zapping the tumor, with minimal and perhaps no damage to surrounding brain tissue. Collectively these types are called External Beam Radiation Therapy (EBRT) but there are many forms. Some of these  are SBRT (GamaKnife is a device name that delivers SBRT to the brain; there are other devices.), IMRT, IGRT and others. Here is some material on precision radiation used in treating brain mets.

Your dad does have a very good chance or eliminating these brain mets with the aforementioned radiation therapy. However, with all lung cancer, especially small cell, recurrence is common. I've had 5 in my treatment history so I'm sure there will be continued monitoring in the form of CT scans for the body and MRIs for the brain in his future. I do hope his treatment eliminates his brain mets.

Stay the course.

Tom

[TJM]

Welcome. First off...love your tag name. Follow your own advice and be hopeful.

SCLC (if that is what he has) is a tough one. But treatment options are growing almost daily (it seems). We have a member who is currently involved with a pretty radical trial. Best part is the trials focus is a curative outcome...i.e. killing the cancer for good. She is a rock star and I'm sure you will hear from her.

As for surviving precision radiation..you have heard from another one of our rock stars....Tom G. Tho he didnt mention it specifically on his post, he has many times given credit to his success to precision radiation. To the point that I would almost rather get a brain met as a recurrence versus other likely places.

Keep the hope.

Peace 

Tom

[Bee_hopeful]

Dear Tom and Tom, 

thank you so much for your encouraging and informative responses! I really do hope, that there are only 3 brain mets, the information he got yesterday was a bit confusing. CT scan of the lung and body / ultrasoud will be performed on monday or tuesday, so we do not know yet, if there are other mets. 
He did a lot of research about precision radiation last night and so did I. Our aim is, that he gets this treatment.  
 

About my tag name… My dad is a statistician and he tends to see only the numbers. Median overall survival and so on. So I took the job to tell him, that HE is not the statistic but an individual and that HE can beat the statistic. Hope is the big sister of fear, so I try to be his big sister :).

Thanks again and with best wishes

Bee
 

 

[TJM]

Excellent response to a statistician! He understands, I'm guessing, and will follow the path. Wishing you the best

Peace

Tom

[Shauna Blackburn]

Hi everyone, (long post warning - need to get it out)

Just joined tonight thanks to a story we saw on Ninja Warrior with a contestant that had a Dad with cancer and they started Living Wide. I went to their website and Lungevity was listed and here I am  I am in a place where my mind will not shut off and I am feeling a breakdown coming, I just do not know when. I feel a bit selfish as I am not the patient, my Mom is. I am researching any and everything to find resources for her. In April of this year she started having issues with balance, headaches and then started not being able to keep food down. She kept fighting us to go to the Dr and saying it was the stomach flu and would pass. Finally, we convinced her to go to the ER. The Dr was saying it was because her BP was high and something else and I was not having it. I looked him in the eye, held my Mom's hand and told him that this has been going on for a month and now she is starting to slur her words. She needs at least a CT of her head because something is wrong and it is not her BP or the flu and to please help her! The results were what we feared and the scan came back with spots in her brain. 

Fast forward 48 hrs and their was an MRI, PET scan, SO many Dr's coming in and out of her hospital room. Result, small cell lung cancer with 8-9 spots mets to her cerebellum. Discharged from hospital on a Saturday and started EBRT on Monday for 10 tx. 8 days later she started chemo and she has just completed her first round of chemo last week - carboplatin, etoposide atexolizumab (immunitherapy) and cosela (bone marrow protection). She has 3 days in a row of treatment and then 21 days off. She is scheduled for 4 rounds. She is already having issues with a low white cell count and has a history of low hemoglobin even before this all started. She is fighting so hard!

We love both her radiation and medical oncologists and trust their treatments. We have been told that with small cell they can extend life by months but not years. I am struggling with trying to figure out how many "months" we have left with Mom, what to do in the right way and the best way to make sure she is happy, what to do to help my Dad (they have been together for 54 years and he just does not know what to do right now), not sure what questions I should be asking, etc., etc. 

Any help and/or suggestions that any of you might have to share would be so greatly appreciated! I just want to make whatever I can be better for her and for my Dad. 

[LouT]

Hi Shauna,

Welcome to our forums and I'm sorry you need to be here.  Your story is a good example of needing to be an advocate when you are involved in medical situations.  SCLC is especially problematic as it can become resistant to treatments over time so approaches are different from other forms of lung cancer.  I'm not equipped to answer your question on "how many months..." and I doubt anyone here can.  But our folks will share their personal journeys with lung cancer to provide information and support for you and your mom.  I see that you posted this in the SCLC Forum and I do want to share some other information with you though.

1. There is a section of our site called, "The Patient Journey" and it is broken down into steps such as "Diagnostics and Treatment" among others and it can be found here.
2. We also have a page titled, "Treatment Options for SCLC" and that is on this page.

Hopefully these pages will provide some additional information for you and in the meantime my prayers are with you and your mom for the best outcome possible.

Lou

[Pstar]

Hi Shauna,

Sorry to learn of your Mom’s diagnosis. I was diagnosed with limited stage Sclc in November 2021. I had 4 rounds of carboplatin/etoposide and concurrent radiation of 30 daily treatments. I have had clear brain mri’s and am currently in a clinical study of mri alone vs pci with mri’s. I am currently stable with my cancer. As Lou said, no one can predict “how long” we have as each patient responds differently to treatment. I am praying that the treatments work for your Mom and arrest the progression of disease and give her many more months. Stay strong.

Pam

[Tom Galli]

Shauna,

I'll add my welcome to Lou and Shauna's. 

I've been on this forum for 7 years and on a prior lung cancer forum for 5 years and almost everyone asks how much time one has left. Of course, I've never had an answer. No one knows. 

I suggest embracing a different point of view: what does one what to do with the time left? Now that is a question that is answerable. No one knows how much time we have in life. We have no recollection of birth and we cannot communicate after death, and these are life's two unquestioned realities. But in the middle between these two poles is life and living, and in this middle ground we have choices. If your Mom chose treatment, then she is choosing living. Help her live and enjoy each moment of life's remaining balance. 

Stay the course.

Tom

 

[Shauna Blackburn]

12 hours ago, LouT said:

Hi Shauna,

Welcome to our forums and I'm sorry you need to be here.  Your story is a good example of needing to be an advocate when you are involved in medical situations.  SCLC is especially problematic as it can become resistant to treatments over time so approaches are different from other forms of lung cancer.  I'm not equipped to answer your question on "how many months..." and I doubt anyone here can.  But our folks will share their personal journeys with lung cancer to provide information and support for you and your mom.  I see that you posted this in the SCLC Forum and I do want to share some other information with you though.

1. There is a section of our site called, "The Patient Journey" and it is broken down into steps such as "Diagnostics and Treatment" among others and it can be found here.
2. We also have a page titled, "Treatment Options for SCLC" and that is on this page.

Hopefully these pages will provide some additional information for you and in the meantime my prayers are with you and your mom for the best outcome possible.

Lou

Thank you so very much Lou. I feel like I have found the community here we needed and will be able to fight an informed fight now that we are part of Lungevity.

[Shauna Blackburn]

8 hours ago, Pstar said:

Hi Shauna,

Sorry to learn of your Mom’s diagnosis. I was diagnosed with limited stage Sclc in November 2021. I had 4 rounds of carboplatin/etoposide and concurrent radiation of 30 daily treatments. I have had clear brain mri’s and am currently in a clinical study of mri alone vs pci with mri’s. I am currently stable with my cancer. As Lou said, no one can predict “how long” we have as each patient responds differently to treatment. I am praying that the treatments work for your Mom and arrest the progression of disease and give her many more months. Stay strong.

Pam

Thank you so much Pam. The radiation helped a lot with symptoms due to reducing the swelling in her brain. 1st follow up MRI is at the end of July. Hoping for some positive news!

[Shauna Blackburn]

4 hours ago, Tom Galli said:

Shauna,

I'll add my welcome to Lou and Shauna's. 

I've been on this forum for 7 years and on a prior lung cancer forum for 5 years and almost everyone asks how much time one has left. Of course, I've never had an answer. No one knows. 

I suggest embracing a different point of view: what does one what to do with the time left? Now that is a question that is answerable. No one knows how much time we have in life. We have no recollection of birth and we cannot communicate after death, and these are life's two unquestioned realities. But in the middle between these two poles is life and living, and in this middle ground we have choices. If your Mom chose treatment, then she is choosing living. Help her live and enjoy each moment of life's remaining balance. 

Stay the course.

Tom

 

Thank you so much Tom. My sister and I talk to her everyday and our kids text or call throughout the week. We check how she is feeling, then move onto our "normal" conversations like we always had. I find that those normal conversations are harder to have and I don't know how to fix that. We have to limit any visiting right now because her white cell count is low, but thankful for technology and video calling so we can "see" her. Hoping for some better days ahead 🙏 ❤️

[BridgetO]

Hi Shauna,  I'm sorry to hear about your mom's diagnosis. You've gotten some good input from other forum members. There's just one thing I wanted to add. There's a medication called Neulasta that is given by injection after each infusion of chemotherapy infusion to help keep white blood cells up. Neopogen is another form of it and I think there are now some generic or biosimilar forms also. I wonder if your mother is getting anything like this?

[Shauna Blackburn]

Hi Bridget, so so sorry that i am just now seeing your response. I will ask her oncologist about this med. 

Mom had a great response to treatment and was walking without walker, doing laundry and decorating for Christmas up until 2 weeks ago. Now off balance and nauseous again. Follow up from MRI today and the spots in brain have doubled to approximately 20 and are in different areas of brain. They are hesitant to do more radiation and her oncologist is looking for meds that would cross the blood brain barrier for treatment. I have seen a new med Zepzelca (?) mentioned in new research for SCLC and will ask about it. I hate that i can't fix this. My Mom is only 72 and my Dad is lost. They have been married for 51 years. I am just heartbroken at thinking what is ahead of us in the next few months.