Small Cell Lung Cancer: Let's connect

I don’t talk about this a lot, because it isn’t my story to tell, but my brother has small cell lung cancer. He was diagnosed with extensive small cell lung cancer 14 months ago with a primary tumor the size of a mans fist in his his lung and multiple small tumors in the lungs, and liver. He took 4 rounds of chemo with immunotherapy, and has continued with immunotherapy. Tecentric is the immunotherapy drug, every tumor has shrunk to undetectable except the big one which is now very small. We are moving him to an apartment down the street next week and he is selling his house to a friend. The original time frame for him was expected that he could live maybe 8 months but now the doctor says he could live years but no guarantees. We are now getting excited to do things together and squeeze every drop out of life for whatever time he has. I don’t know if this success helps anyone here, but I can hope it does.

Chris- What wonderful news! You both must be very excited!

We are, thank you. I know a little about immunotherapies, and monoclonal antibodies but until I saw this one in real time, I couldn’t truly grasp the impact it can have on the lives of patients and families. I know they aren’t perfect but no surgery, no radiation, and so far, so good. Our wonderful oncologist says he has a patient who has been on it since clinical trials and still going strong at more than three years. That truly is hope for patients who have previously not had much to hope for.

Hello all- There is a webinar for Individualized Treatment for Small Cell Lung Cancer sponsored by the Educated Patient through Cure Media group. If you are interested here is the registration form.

If you go will you let me know how you like it and if it cleared anything up for you?

Thank you for posting this, I am sending this link to my brother. I will let you know if he attends, or better yet maybe he will join connect FINALLY, and tell you himself. You do so much for this community, thank you!

Chris- Good morning and thank you. Small cell lung cancer is difficult to treat because it's so aggressive. I'd love for your brother to join this group and to meet him. How is he doing? How long has he had cancer?

I've had non-small cell lung cancer for 23+ years. We all seem to have battles to fight. But fight, we do!

That is so true, everyone has a battle they fight. My brother was diagnosed about a year ago, just after we lost my cousin to lung cancer. It was a very hard time for our close knit family. He just keeps keeping on. He just sold his house and moved into an apt. Just down the road so I can help him more. He gets his tecentriq today. Are you still on some form of treatment? Is it managed kind of like when it comes up? Or steadily and constantly?

I am helping a friend who has recently been diagnosed with small cell lung cancer, stage 4, and it has spread to other areas. She is receiving chemotherapy (carboplatin and etoposide) and immunotherapy (atezolizumab). After she received her first round, she developed significant hand tremors (impacts her daily life and sleep). Is this a known side effect of any of these drugs?

She has never experienced these tremors before starting the treatments. Are there any potential treatments that we might discuss with her doctors, just to relieve or reduce her symptoms?

There is chatter on the internet about a linkage, but I don't trust that info necessarily. Any help would be appreciated.

Kelly

Hi Kelly, you’re really a wonderful friend to have your friend’s back during her cancer treatment. As you can see it’s not an easy journey and she needs all the support she can get. She’s on some powerful medications to help her fight this cancer and I’m so sorry she’s having side effects of tremors. I was on a medication that had a similar affect and it was annoying and unnerving at times. However I had the advantage of knowing which drug it was and that this was an expected side effect which would go away once off.
For your friend, this has to be particularly stressful as she doesn’t need anymore uncertainty added to her already full plate. I’m looking at the 3 meds she’s on and I’m wondering it it’s the Atezolizumab, that is creating the issue. I found this informational article about the side effects of this drug.
https://www.mayoclinic.org/drugs-supplements/atezolizumab-intravenous-route/side-effects/drg-20311657

Searching the internet isn’t always the most trustworthy source, for sure. Your friend’s symptoms are significant and if she’s worried, she really should be letting her doctor know. Has your friend spoken to her cancer team about this?

Thank you Amanda - The answer from the medical team is non-committal. I appreciate you sharing your experience. Knowing which drug caused the problem and that you recovered after treatment is helpful. You might be right about the Atezolizumab given the LONG list of side effects. Thank you for your input.