Update on husband’s Extensive Stage SCLC and treatment
My husband was diagnosed with SCLC back in October, 25. It was originally in his right lower lung lobe a couple nodes and had Mets to liver, and three vertebrae in spine. No brain Mets on 2 previous MRI’s.He had 4 cycles etoposide plus carboplatin, and immunotherapy atezolizumab. Had CT which showed favorable shrinkage of lung tumor, not seen in nodes, minute mm left in liver and nothing showing on vertebrae. Then prophylactic brain radiation was given x 10 doses. There is what is called Hypocampus sparing brain irradiation, which ar the memory centers of the brain and we agreed only to have it done, if they could do this. His radiologist said they could and so went forward with it. His side effects were tiredness, hair loss and yes..short term memory loss. ( another discussion altogether!) He then continued with only the atezolizumab immunotherapy every 28 days. He was given 2 treatments and on April 27th, given a repeat CT of chest, abdomen and pelvis. New scan showed the immunotherapy did not work and original primary tumor was back, along with another behind 2 affected lymph nodes. It also showed some pleural effusion ( fluid in space between lung and pleural membrane). With collapse of right lung. He ended up in hospital with severe shortness of breath and home pulse ox of only 73%. He was in 2 days and placed on home oxygen 1-3 lpm. Now they are doing more radiation to his right lung mass, to try to clear his right bronchial airway so his breathing is better. Ordered to get 4 doses, which started today. The scariest part of all this is what is coming next. On Tuesday, he is supposed to report to the oncology department of the Taussig Cleveland Clinic Cancer center for an infusion of a new immunotherapy drug…Imdelltra ( Tarltamab) to be infused 1x/week x 4 weeks. The first two doses REQUIRE an overnight stay so he can be monitored for Cytokines Storm or ICANS ( neurotoxicity syndrome). These can both be life-threatening if they occur. If he tolerates it well, dose 3 and 4 can be given on outpatient and will get infused every 2 weeks thereafter. My husband’s overall health has declined some. He lost about 17 lbs since this started, mostly muscle mass and his COPD seems exacerbated. His appetite is just average to minimal. I think food puts pressure on his diaphragm, making it more difficult to breathe, so he avoids it, Most days he is pretty tired, has energy to walk around a store for 45 minutes but usually comes home and naps for short periods. He says he is not ready to “give up.” Wants to try this. I have my reservations but I don’t want to discourage him or put negative thoughts or fear into him. I did tell him at anytime, if he has side effects, he can stop.
Im sorry this is so long but just wanted to give an up day and put it out there for anyone else who may be dealing with this.
God bless you all and May he give you strength for your journey to fight this disease!
Donna
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@ohiogal8860 thanks for sharing an update of how your husband is doing. I wanted to compliment you on how you are both giving support and respecting your husband's agency in choosing what treatment he wants to try (even when it's scary). that's a tricky balance and I think your husband is very blessed to have you. please keep us updated on how things go with tartltamab. wishing him a positive response with no side effects and sending you both hugs.
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2 ReactionsDonna,
I am so sorry you and your husband are going through this ordeal! That's very hard. My husband had stage 4 lung cancer. He reacted badly to immunotherapy and chemotherapy. In fact, he almost died from both of them. After that experience he stopped all treatments. We just ate healthy and prayed a lot. God was there for us because my husband lived 14 years with lung cancer. He died in 2024. Sometimes your body has just had enough of medications and needs a rest for a while.
It helps to read the side effects of any medication or treatment before your husband gets it. Then you have an idea of what to expect and if you want to try it. You can get that information on the Mayo Clinic website.
I'll say a prayer for both you and your husband.
I wish you the best.
PML
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5 Reactions@pml
Thank you for your prayers. That is awesome, the Lord gave your husband extra 14 years! What a gift.
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2 Reactions@mamajite,
Thank you for the well wishes!
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2 ReactionsI’m sorry you and your husband are on this journey. My husband was diagnosed with SCLC in July 25. Went through the same chemo and immuno as your husband. Immuno after chemo did not work and the cancer spread to his liver, spine and sacrum.
He started the Tarlatamab treatment you described in early April. His first treatment he did experience the CRS reaction and they gave him steroids and a medication to relieve the symptoms. We were in the hospital for 4 days instead of 1. The second treatment wasn’t quite so bad and he was in the hospital for 2 days. The next 3 treatments have been outpatient without any CRS symptoms so we stayed near the hospital for 24 hours and then were able to go home.
He is extremely fatigued for several days after treatment, is congested and has no appetite.
However, based on recent CT, MRI and labs he seems to be having a good response to the drug. No further spread and some of the METS have decreased slightly.
Like your husband mine wants to keep fighting. Some days I wonder if it’s the right choice, but as long as he’s willing to keep going I’ll keep supporting him.
I’ll keep you in my thoughts as you continue your journey. Hoping for very positive results for him with the TARLA treatments.
Margaret
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4 ReactionsDonna, @ohiogal8860, Thanks for sharing this update. Hoping things go well for you both this week. We'll all be thinking of you. Hugs.
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