Is there hope for small cell lung cancer patients?

Posted by ohiogal8860 @ohiogal8860, Oct 28 8:30pm

Hello, I’m new to the group and my husband was just diagnosed with localized small cell lung cancer in his right lower lobe. He is waiting the final pathology report and as of right now does not want to do chemo. He is 73 yrs old
and had a collapsed left lung in 2019 and the doc who did his biopsy said that surgery is probably not an option because of his left lung is in bad shape from COPD.
Is there anyone out there that has dealt with or dealing with SCLC and what I should expect?
Thank you for reading.

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hi @ohiogal8860 - I have non small cell lung cancer, but I wanted to respond to you. I'm sorry that you and your husband are facing such a difficult diagnosis. Have you received the results from his PET/MRI scans yet? Usually recommended treatment for SCLC is some combination of chemotherapy and radiation, which sounds in line with what you also heard from your husband's surgeon. You have probably read that the survival rates aren't good for SCLC - that's because even though it responds to chemo, it keeps reoccurring. I would ask his oncologist the hard questions about how extensive is the disease now and what treatment options are available to try and what the pros/cons of those include. And don't be afraid to seek a second opinion as quickly as possible. For me, it's been important to balance hope for my future with realistic plans to make sure my family will be ok. I have a will, power of attorney (for financial matters) and healthcare power of attorney set up. You might also want to talk with an attorney to get those documents in place for your husband (they're good for everyone to have.) Most importantly, I hope you both have lots of support! Let us know what you learn from the pathology report. Hugs!

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Hi @mamajite,
my husband’s pathology report came back as surgeon thought, SCLC with one lymph node involvement on the 21st. I have no idea, what genetic results came back, if any. We now head to see the oncologist for the first time on the 3rd. Why is it so important to get a second opinion? We already have all our finances in joint and survivorship accounts and TOD (transfer on death) to avoid probate. Yes, that is important. I can’t imagine how scared he is, if I am feeling this way. He isn’t saying much.
Thank you so much for sharing and I hope your journey through this is full of many days of healing and strength.

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hi @ohiogal8860 - I imagine that the oncologist will have more information and a treatment plan in mind when you meet. for me, I have a rare genetic lung cancer and I wanted to be seen at a more research focused NIH Cancer Center. (they are also the places that have the best access to clinical trials.) both oncologists I met with proposed the same treatment plan, so that also gave me some reassurance that I was making the right treatment choice. you can use this link to see what is closest to you.
https://www.cancer.gov/research/infrastructure/cancer-centers/find
thanks for your kind words - let us know how things go at the appointment 🙏🏻

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Hi@ohiogal8860,
I am a 85 year old male and I was diagnosed with SCLC/high-grade neuroendocrine tumor in the upper right lung. The mass measured 10x10x6.7 cm. There was also indication of malignancy in the lower left and lower right nodules. After an initial consultation with a medical oncology doctor the prognosis was not very good and was told that I must begin treatment immediately if I was to survive for more that few months at best. Surgery was not an option due to my age and the size and location of the tumor. However I did not have any other health issues and was in good physical condition. I began chemotherapy on May 24, 2024 on a 21 day cycle. I was given Carboplatin and Atezolizumab by infusion with Etoposide orally. I completed four cycles with these drugs. While I was receiving the treatments my oncology doctor recommended clinical trial drug that he had been researching and I was lucky to be accepted as one of six participants in Phase One of a clinical trial of Quaratusugene Ozeplasmid and Atezolizumab Maintenance therapy in patients with extensive stage SCLC. I began treatments on a 21 day cycle Sept. 9, 2024. I have now completed 20 treatment cycles with CT scans after every second session. The tumor has been reduced to 6.6 x 2.6 cm after chemo and the first two sessions with the trial drug. All of the CT scans now show no increase in the size of the mass and the lower left and lower right nodules remain resolved/non-measurable. I am the only patient still receiving the lower phase one dosage and the sponsor is continuing to pay for the trial drug. My insurance covers the immunotherapy drug and the administration of it. I experienced some side effects from the chemo and the first few sessions of the trial drug such as high fever, chills, increased pulse rate for the first 24 to 48 hours after treatment. Now I do not have those side effects but continue to tire very easily and do not feel so great for two weeks after treatment.
I know that all cases are different but I hope your husband will find some relief and hope for a maintenance program for him. The American Lung Cancer Associaiton as well as Mayo has listings of clinical trials.

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Hello @ohiogal8860, Cancer is way too common, and I'm sorry to hear that you and he are having to face this. He's fortunate to have you by his side.
I have to admit, I have been known to push back against treatments at first, especially when I'm feeling fine. I need time to process the gravity of the situation, and I need time to understand what's involved with the treatment options. In each case I have come to agree to a treatment that works for me. I think my husband has learned to watch this process play out, but I'm sure it's stressful for him too.
The questions you have about prognosis are best answered by his doctor. The final pathology from his biopsy will help to understand how aggressive the cancer might be.
Ask your husband to try to go into the appointment with an open mind. After he has time to digest what's in front of him, with treatment or without, get him talking about his concerns.
Is he experiencing any symptoms? Was the cancer found through lung screening?

Here's a link to a fairly extensive discussion regarding small-cell:
https://connect.mayoclinic.org/discussion/wifes-diagnosis-sclc-chemo-next-week-what-should-i-do/

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Profile picture for edwardf1939 @edwardf1939

Hi@ohiogal8860,
I am a 85 year old male and I was diagnosed with SCLC/high-grade neuroendocrine tumor in the upper right lung. The mass measured 10x10x6.7 cm. There was also indication of malignancy in the lower left and lower right nodules. After an initial consultation with a medical oncology doctor the prognosis was not very good and was told that I must begin treatment immediately if I was to survive for more that few months at best. Surgery was not an option due to my age and the size and location of the tumor. However I did not have any other health issues and was in good physical condition. I began chemotherapy on May 24, 2024 on a 21 day cycle. I was given Carboplatin and Atezolizumab by infusion with Etoposide orally. I completed four cycles with these drugs. While I was receiving the treatments my oncology doctor recommended clinical trial drug that he had been researching and I was lucky to be accepted as one of six participants in Phase One of a clinical trial of Quaratusugene Ozeplasmid and Atezolizumab Maintenance therapy in patients with extensive stage SCLC. I began treatments on a 21 day cycle Sept. 9, 2024. I have now completed 20 treatment cycles with CT scans after every second session. The tumor has been reduced to 6.6 x 2.6 cm after chemo and the first two sessions with the trial drug. All of the CT scans now show no increase in the size of the mass and the lower left and lower right nodules remain resolved/non-measurable. I am the only patient still receiving the lower phase one dosage and the sponsor is continuing to pay for the trial drug. My insurance covers the immunotherapy drug and the administration of it. I experienced some side effects from the chemo and the first few sessions of the trial drug such as high fever, chills, increased pulse rate for the first 24 to 48 hours after treatment. Now I do not have those side effects but continue to tire very easily and do not feel so great for two weeks after treatment.
I know that all cases are different but I hope your husband will find some relief and hope for a maintenance program for him. The American Lung Cancer Associaiton as well as Mayo has listings of clinical trials.

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@edwardf1939
Thank you so much for coming in and sharing your experience with SCLC and all that has helped you. My husband won’t quit smoking, although he has cut way back to about 5/day. He had quit for 3 yrs. and then started again and now this. I will write down your drugs for the trial you are in and talk to his oncologist tomorrow when we go and talk with him, I am very hopeful reading your testimony on how your turmors shrunk and very happy you are hanging in there. May God bless you as you continue to heal and find restored health.

REPLY
Profile picture for Lisa, Volunteer Mentor @lls8000

Hello @ohiogal8860, Cancer is way too common, and I'm sorry to hear that you and he are having to face this. He's fortunate to have you by his side.
I have to admit, I have been known to push back against treatments at first, especially when I'm feeling fine. I need time to process the gravity of the situation, and I need time to understand what's involved with the treatment options. In each case I have come to agree to a treatment that works for me. I think my husband has learned to watch this process play out, but I'm sure it's stressful for him too.
The questions you have about prognosis are best answered by his doctor. The final pathology from his biopsy will help to understand how aggressive the cancer might be.
Ask your husband to try to go into the appointment with an open mind. After he has time to digest what's in front of him, with treatment or without, get him talking about his concerns.
Is he experiencing any symptoms? Was the cancer found through lung screening?

Here's a link to a fairly extensive discussion regarding small-cell:
https://connect.mayoclinic.org/discussion/wifes-diagnosis-sclc-chemo-next-week-what-should-i-do/

Jump to this post

@lls8000, Thank you for the encouragement and for sharing the link to more discussions. I’m still learning how to navigate this site and appreciate that this group was formed for support for us that need it.

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Profile picture for Lisa, Volunteer Mentor @lls8000

Hello @ohiogal8860, Cancer is way too common, and I'm sorry to hear that you and he are having to face this. He's fortunate to have you by his side.
I have to admit, I have been known to push back against treatments at first, especially when I'm feeling fine. I need time to process the gravity of the situation, and I need time to understand what's involved with the treatment options. In each case I have come to agree to a treatment that works for me. I think my husband has learned to watch this process play out, but I'm sure it's stressful for him too.
The questions you have about prognosis are best answered by his doctor. The final pathology from his biopsy will help to understand how aggressive the cancer might be.
Ask your husband to try to go into the appointment with an open mind. After he has time to digest what's in front of him, with treatment or without, get him talking about his concerns.
Is he experiencing any symptoms? Was the cancer found through lung screening?

Here's a link to a fairly extensive discussion regarding small-cell:
https://connect.mayoclinic.org/discussion/wifes-diagnosis-sclc-chemo-next-week-what-should-i-do/

Jump to this post

@lls8000, the cancer was accidentally found during a CT of his abdomen he has once a year to check on his Abdominal Aortic Aneurysm graft from 2018. His only symptoms are weight loss without trying and a productive cough that is blood tinged, mainly in morning. No pain. He is keeping an open mind but he’s going to ask me what I think he should do and I don’t want to be the one making that decision. I’ve heard so many stories on how chemo rips the life out of you, killing off good cells, stealing your quality of life, and others who have had positive results. We are believers and want to give God the praise and glory for any healing that comes forth. We are trying to keep our faith but not easy when it seems like the diagnosis of doom.

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Profile picture for ohiogal8860 @ohiogal8860

@edwardf1939
Thank you so much for coming in and sharing your experience with SCLC and all that has helped you. My husband won’t quit smoking, although he has cut way back to about 5/day. He had quit for 3 yrs. and then started again and now this. I will write down your drugs for the trial you are in and talk to his oncologist tomorrow when we go and talk with him, I am very hopeful reading your testimony on how your turmors shrunk and very happy you are hanging in there. May God bless you as you continue to heal and find restored health.

Jump to this post

@ohiogal8860 You are welcome. Lung cancer is a very sneaky cancer. I smoked for more than 2 years but I quit smoking 42 years ago. I have read that some people who have had lung cancer never smoked. My diagnosis was a complete shock since I thought I was immune to lung cancer because I had quit so many years ago. Plus, I had not symptoms except for a feeling of fullness in my chest a few weeks before my diagnosis.

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