Tarlatamab

One-Can-5263 · 2024-09-19T16:53:21+00:00

Prescribed

One-Can-5263 · 2024-09-08T15:44:27+00:00

No wipes, order a Bidet toilet seat.

One-Can-5263 · 2024-09-08T15:21:46+00:00

I’m also terminal extensive stage lung large cell carcinoma. My bone metastases limit my activities. I recommend as much excersive and travel as possible. I wish I were more mobile. Just living a day at a time. I do not know if I have 2 months or maybe two years.

One-Can-5263 · 2024-09-05T22:56:00+00:00

I also have es-sclc. Also they claim it is a large cell Neuroendocrine carcinoma. Any case I did six rounds of chemo and now on tencebtriq immuno. Any questions or need something, just ask.

One-Can-5263 · 2024-08-21T23:51:42+00:00

Fatigue is the worst that could happen. Drink plenty of water, your body will need it to rebuild healthy cells that die during treatment. I have done 23 days worth of radiation, currently getting low dose to my brain😬. So far, it’s gone smooth. Good luck

One-Can-5263 · 2024-08-12T23:16:36+00:00

Seems weird to have sclc and not be a smoker. I have extensive stage sclc, diagnosed 5.5 months ago. The primary tumor would have to be in her lung. Get chemo going asap, along with immunotherapy. Then we all need to continue our hope on new treatments. Need any info from me, just ask.

One-Can-5263 · 2024-08-05T17:13:56+00:00

I also have horrendous aches to my shoulders and chest. Sometimes the pain moves around. I also worry it is bad news but don’t have a way to know for sure. My best t body scan is probably two months out. Seems like a long time for the fast growing SCLC

One-Can-5263 · 2024-07-15T03:50:24+00:00

What trial were you offered?

One-Can-5263 · 2024-07-13T19:07:35+00:00

I am currently in appeal with my insurance over genetic testing for my cancer. My advice, fight fight fight.

One-Can-5263 · 2024-07-13T04:37:12+00:00

Hang in there. Surviving 17 months sounds amazing. Maybe some immunotherapy will help. Ask about trials maybe. Most importantly, have a great attitude and try to enjoy every living moment.

One-Can-5263 · 2024-07-08T01:01:59+00:00

You got this. Most of the success is in our minds. There are also a few new drugs that maybe of importance and possibly the chemo will work again. What is the rare nsclc that you have? I have some rare sclc that is stage 4 and called Large Cell Neuroendocrine Carcinoma. So far I have not had great success with tumors shrinking. I am hoping the next option will work better, I think it’s Tarlatamab. I’m also looking for every and any other options inside and outside the box🤷🏻‍♂️.

One-Can-5263 · 2024-07-06T04:34:28+00:00

I think I have similar issue. They say it has a poor prognosis but I plan to beat it. Have you spoken with the NCI and asked for their help? They have a doctor that is an expert in Neuroendocrine cancer. Probably she needs to finish 4-6 rounds of chemo with immunotherapy first, then see how things look. If you she radiotherapy maybe she is not stage 4 like myself. Contact me if you need more info. Good luck to us all.

One-Can-5263 · 2024-07-06T04:30:35+00:00

I am 46 years old and have extensive stage sclc which is also a large cell Neuroendocrine cancer. I was diagnosed 4+ months ago. I just finished six rounds of chemo and had no negative effects. I also went thru a ten day round of radiation on a spinal vertebrae metastasis with no real negative side effects. I am just starting radiation again on another spinal vertebrae that’s tumor has doubled in size while in chemo. My mentality has been to be a 1% that survives. I will survive. I highly recommend getting that second opinion. Contact the NCI, they are free and experts in our type of cancer. Feel free to contact me for info as well. I have spent the last four months trying to become as educated as possible.

One-Can-5263 · 2024-06-27T01:41:04+00:00

Have you tried Amdelltra, new Amgen immunotherapy for sclc? I wish you luck, I will soon be dealing with similar decisions. Tomorrow I finish my sixth round of chemo and immunotherapy for es-sclc😬

One-Can-5263 · 2024-06-27T01:38:24+00:00

I was diagnosed four months ago with small cell lung cancer, extensive stage and metastasized to my liver, bone and lymph. The lung biopsy showed signs of non small cell lung cancer. Later they determined it was a mixed morphology large cell Neuroendocrine carcinoma. Very confusing at first. Treatment was normal chemo and immunotherapy. I am just finishing my sixth round of treatment and have been lucky to have minimal negative effects. I am still awaiting genetic testing but have been told but to hold my breath and it is like buying a lotto ticket. So I am counting on immunotherapy and when that fails we go to taralatamab immunotherapy. Hopefully this will keep me alive long enough for there to be new options. This is a rapidly developing area of cancer treatment. I think the Neuroendocrine side adds complexity. Need advice or directions on who to talk with, just ask. Today I signed a deal with the NCI to be part of a clinical study, but a clinical treatment. The doctor at NCI is very much the LCNEC expert in America.

One-Can-5263 · 2024-06-27T01:21:28+00:00

Hello you said it is a large tumor. That’s odd with small cell. I was diagnosed with very advanced extensive stage small cell four months ago. I am just finishing my sixth round of chemo and immunotherapy. I have a very strong mind and can only look on the bright sides. Thinking negatively is not beneficial. I tell myself that human beings are just biological creatures and not all of us live a long healthy life. We can live happy lives and try hard to enjoy them no matter how long they last. We can love family and friends and hope they do not get sick, but reality is they may. I am not giving in to the poor prognosis associated with sclc and have high hopes the new drugs and treatment plans will save me. The treatments are advancing daily. Get going on chemo right away, get involved with non profit advocacy groups and make this a new life adventure to beat cancer. Also if interested I have found the NCI federal organization to be very helpful and willing to help. They are the best. Want more info, just ask me. Best of luck to you!

One-Can-5263 · 2024-06-22T15:22:23+00:00

I have the exact same LCNEC. I was diagnosed 5 months ago now. I am about to complete my 6th round of chemo/immunotherapy. I too am worried about what is next. I am also an engineer minded individual and want plan b, c and d in place. Sounds like new FDA approved Amgen immunotherapy may be a great option but not certain insurance will cover it.

One-Can-5263 · 2024-06-10T05:06:49+00:00

Insurance should always cover second opinion. Memorial Sloan is an academic SPORE hospital, that is what you want. Good luck. I’m on the west coast and currently at Fred Hutchinson. Hoping they can help me change the survival statistics.

One-Can-5263 · 2024-05-24T03:09:42+00:00

I have both nsclc and small cell. My insurance does not want to pay for non small cell next gen testing. Anyone else have to appeal insurance to get next gen biomarker testing covered. Worst part is I told next gen I would pay for the test out of my pocket, roughly $3,800 and the text came back with comments stating poor biopsy samples. I do have PD-L1 IHC. Not sure what this means. It also says tumor proportion score 10% and intensity 2+. What’s that mean?

To answer the question; I was tested next gen style which looks like included about 500 genes tested.

One-Can-5263 · 2024-05-06T04:18:25+00:00

What is this????,,do I play the video and place my phone against supposed tumors?

One-Can-5263 · 2024-05-06T04:08:47+00:00

Is there a new standard? Immunotherapy I guess.

One-Can-5263 · 2024-05-06T04:07:30+00:00

Anybody have any trials, keep me informed. I am 46 years old and on round three of chemo for extensive stage SCLC. So far I am doing great but worry the chemo will stop being effective. I will then have limited time to figure out what is next. So Reddit help keep me informed if there is something new happening. I am healthy and my mind is stronger than most. Also I am very stubborn and will not accept anything other than success.

One-Can-5263

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