Ms Fredericks Posted March 24, 2020 Share Posted March 24, 2020 Hi Community, Unfortunately after weeks of waiting we have finally found out that my mom (63 non smoker) has extensive stage IV lung cancer that spread to many bones and the abdomen. They said there is no time to waste and are starting Chemo and immunotherapy tomorrow. She can barely walk at this point though. I’m terrified that she won’t be able to handle the treatment. Are there any caregivers or survivors of extensive stage IV that can help give us more hope. I don’t want to put weeks or months to how long she has. I am her rock and am pushing positivity left and right, but I’m scared and losing hope the more I read. I’m too afraid to even ask “how long” to our Doctor who I trust deeply. Needing help, both of us. Please. Thank you for the support. ❤️ Link to comment Share on other sites More sharing options...
Tom Galli Posted March 25, 2020 Share Posted March 25, 2020 Welcome here. A point of clarification about the nature of your mom's disease. You use the term extensive stage IV lung cancer. Extensive stage is normally associated with a type of lung cancer called Small Cell Lung Cancer (SCLC). Does your mom have small cell? Alternatively, she may have Stage IV non small cell lung cancer (NSCLC). The distinction between types of lung cancer is important. Can you tell us if your mom has any underlying health problems besides lung cancer? Can you also tell us the names of the chemotherapy drugs and immunotherapy drug? I note your mom is starting combination chemotherapy tomorrow. That is conventional chemotherapy (perhaps pemetrexed and carboplatin) given concurrently with immunotherapy. Combination chemotherapy is now a national standard of care for first line (first treatment) therapy. So is there is more than hope that this therapy can stop the progression and arrest her disease. There are people alive who can attest to it. Clarify your mom's type of lung cancer and tell us of the drugs she is receiving, and folks here will share their experience with this new and effective combination chemotherapy. Stay the course. Tom Link to comment Share on other sites More sharing options...
Ms Fredericks Posted March 25, 2020 Author Share Posted March 25, 2020 Hi Tom, Sorry for the lack in information. I truly wrote my post in a tear filled haze prepared to go for a brain MRI and trying to find hope. She has NSCLC Stage 4 or in her diagnosis Metastatic Adenocarcinoma of the right lung. She is starting Keytruda, and Carboplatin + Paclitaxel tomorrow, and they want her to do 1 day of treatment every 3 weeks for 4 sessions as of now. She is on medication for high blood pressure but has no other underlying health conditions, although her weakness from the cancer has her unable to walk far or do anything but switch from bed rest to “couch rest”. Thanks for telling me the important info to get out there. Please if anyone has any insight and hope, I am grateful. We need hope in these tough times more than ever. Link to comment Share on other sites More sharing options...
Tom Galli Posted March 25, 2020 Share Posted March 25, 2020 Ms Fredericks, Ok, stage IV adenocarcinoma with combination chemotherapy of paclitaxel and carboplatin with Keytruda. I think you find folks here who can tell of this treatment experience. Here is some information that may be helpful for her infusion. Stay the course. Tom Link to comment Share on other sites More sharing options...
Steff Posted March 25, 2020 Share Posted March 25, 2020 Ms. Fredricks- Is there hope? YES My mom had a very similar treatment - Keytruda + Chemo, but her chemo drugs were carbo and alimta. When my mom received this treatment, it was for a non-small cell adenocarcinoma diagnosis recurrence. Her original diagnosis was stage 3a. Her original diagnosis resulted in a lobectomy with follow up chemo and radiation. The follow up treatment obviously did not work as her cancer was back in less than a year and her new treatment plan was put into play. Rest assured, your mom is receiving the gold standard of care for her diagnosis. This standard of care has evolved quite a bit in the past few years and has resulted in late stage lung cancer patients living longer and/or having no evidence of disease. My personal opinion is that your mom is in good hands with immunotherapy. You mentioned that she is scheduled to receive 4 treatments. What will happen after that is they will do another scan to see if the cancer has responded to the treatment. They then will decide to continue with the same treatment or change it - they could choose to continue Keytruda + chemo, or Keytruda alone, or something completely different if the cancer doesn't respond. My mom did a total of 6 infusions with Keytruda + chemo (her original plan was 8 infusions of the combo, but her cancer responded really well) and then she went on to Keytruda alone for about 1 year. My mom has had no evidence of disease well before her treatment was done. Many, many people have great results with immunotherapy. My mom was 63 when she was diagnosed the 2nd time. She has many underlying health issues, including rheumatoid arthritis and diabetes. She wasn't in the greatest of health. Her docs were worried how her body would respond to the immunotherapy because of her autoimmune disorders. She did relatively well with her treatments, but ultimately had to stop due to severe side effects. Again, she had had no evidence of disease for quite awhile before this, so stopping treatment was not a hard choice for us. Her side effects declined and she is mostly back to normal. Most people respond fine to immunotherapy. Your mom's high blood pressure meds may need to be adjusted through this process and she may need to take meds for thyroid issues (that's a pretty common side effect, but is manageable with meds). The chemo has it's own side effects, but with meds to help, the side effects are mostly manageable. It's no walk in the park, but atleast the chemo is likely to be temporary. I could go on and on, but you can check out my mom's journey here. and here. Do know that my mom lives a full life and does the things she wants. She's ornery as ever and happy! Hope this helps a bit. Take Care, Steff Link to comment Share on other sites More sharing options...
Ms Fredericks Posted March 25, 2020 Author Share Posted March 25, 2020 Steff, Thank you SO much for the information regarding your moms journey. I am beside my mom while she’s sleeping through her first infusion now and your story and connection brought tears of hope through this crazy and scary time. I am so happy your mom has someone like you and that she is living the life she wants! Wishing you and your friends and family the best. Kindly, Mallory Link to comment Share on other sites More sharing options...
Steff Posted March 25, 2020 Share Posted March 25, 2020 Thanks Mallory! Give your mom a big hug from me and tell her she is in good hands with her treatment plan. There is HOPE. It may be hard to see through the darkness that you are in right now (believe me, I've been there), but HOPE is on the horizon. I am glad she has you for support and to be her advocate. You are in a good place for accurate information and we are here to support YOU! Link to comment Share on other sites More sharing options...
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