Free to Breathe

FDA approval for Investigational drug Small Cell Lung Cancer

Hello all,

FDA approved APG-1252 as a investigational drug for treatment for small cell on or about Jan 5 2017.

Also PEN-221-001 Somatostatin Reeptor 2 Clinical Trials.gov

Expresses Advance Cancers including Neuroendocrine and Small Cell Lung Cancers

I hope this continues because folks with small cell really need to have new therapies in place. When I here the Gold Treatment is the only treatment gives me pause, hoping for advances in the 2017 that will give all of us suffering from these cancers hope....Kym

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This means that the drug company now can set up clinical trials of this drug in the U.S. Good news for SCLC patients where more options are very much needed.

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Kym-

What hospital are you getting treatment at?

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Fox Chase in Phila pa

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I am geting treatment through Dana-Farber in Boston and having chemo and the trial or placebeo drug through New England Cancer Insitute in Scarborugh Maine. This is a study of 400 folks from all over. In order to be in my study you can not have been treated by chemo first. It is a first line treatment, however you still get the chemo as planned.

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Hi kym-

That's interesting! I don't live far from Scarborough. I line near Augusta Maine. My dad also goes to Dana farber in Boston. What a coincidence. Does it make you weary that you don't know if you're getting the medication or placebo?

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In a way it does, but I am still getting the same 30-year-old standard of care for small cell lung cancer with the hopes I may be the lucky one that will get the drug and not the placebo. My Doctor at Dana-Farber stated if I wanted my treatment closer to home I could do that. I am happy that I did, I do not think I would of be chosen for the trial at Dana-Farber. Reason being more folks in line and I asked my oncologist there and he said no. I think being the head of oncology his mind was so set he could not imagine anything other line of treatment. So I consider lucky with my choice. I have a caring and younger oncologist who is more open and listens.

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Hi Kym-

Out of curiosity, who was your Oncologist at Dana Farber in Boston?

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Dr Michael Rabin

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Dana Farber in Boston-having my treatments at New England Cancer Insitute in Scarborough Maine. Also, I was able to get into a first line treatment with them. My oncologist in Boston told me there was none available. Felt like he threw in the towel on me.

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what is the gold treatment? Kym

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The treatment is the same two chemo's first line that they have been doing for over 30 years. To me not enough is done for SCLC, one it being the one that is tied to smoking, 2) the amount of souls who get this has gone down over the years, hence quitting smoking. 3) Even when one quits they can still come down with SCLC. 4)

I do believe we who have this disease have mutations and there is a genetic component and chromosome defect . We deserve a chance to live longer and since there is a mandate out there since 2014 to do just this, then we should all be tested period.

I am a firm believer that everyone's cancer is genetically different and reacts differently to treatment that the other person. This is only my believe but if you look at the science it does point to this.

So Tuesday when I start my second round of chemo and meet with my oncologist I am going with scientific papers in hand and a demand that he work with me and ordered the mutation and genetic testing that I sign up for at Dana-Farber.

I am not a lost cause and I may die someday but it does not have to be from SCLC. I do not want to be a statistic the is the norm. I want to be the one who breaks the norm.

Sorry for the rant-

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You go. I agree we must stand strong as all cancers need treated. I too am not a lost cause. Thank you

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Hi , I am 4 years since treatment ended ,still here and still clear , leftover side effects , but worth it, 2 different chemos and radiation at the same time, It was a trial, that I didnt join because they wanted to do radiation twice a day , I declined, I was told no surgery on SCLC. Did have PCI (radiation) of the brain 10 days,But now I use that as an excuse for forgetting, rather than admit old age lol

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Were you extensive SCLC when diagnosed? What type of chemo's did they use both times.? Congratulations for the fours years. I love hearing this news.

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I was limited,2 chemos cistoplastin and something else,and radiation at the same time brain radiation after treatment over,10apointments for that

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I love hearing survivor stories like this. My dad is being treated for small cell lung cancer.. it's been such an emotional road. He starts radiation next week which includes the brain. What other side effects did you experience from the radiation?

I admire your strength to move forward!

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Mostly neuropathy, shortness of breath ,and the worst hairdo in the world

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My Mother had ten rounds to the whole brain. Very tired, strange taste in her mouth. Her hair didn't fall out for about 13 days, well about three days after radiation was complete. Then CHEMO!!!!! OH my God, I've seen it, I've heard it..... That almost killed her and she mentioned not being able to keep going. But she knew there was also a plan following her so kept on. Pospone a week a few times for blood transfusions but she handled that like a TRUE CHAMPION!!!!!!!!! She has a great team of doctors that are finding this very intense cocktail is have miraculous results on the SCLC...... And with this particular form of cancer. Okay thanks for letting me tell my story

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❤️😀This is absolutely beautiful!!!!!!!!!

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I am in AU, my husband has SCLC, dx a year ago. He's doing now the 2nd chemo cycle. He had a dreadful BMS clinical trial, but was useless as it was a phase 1, with the sole purpose to check the safety dosage. Now they have moved to phase 2 and that means that everyone gets nivolumab too, but they excluded my husband because they not allow to crossover from one phase to the other. They forgot to mention that when he signed up for it! ye, they are a shitload of b'tards IMO. Criminals!

Nivolumab is approved for NSCLC, though privately you can buy it for SCLC as well, but for a little fortune. You wonder if they are really there to help you or what!?

Ironically the very 1st report my husband had said it's NSCLC , the 2nd test came back with SCLC. Never had a biopsy and was not tested the 3rd time.

it would be soooo simple, need an onco, who'd go with the 1st report, and he would get that nivolumab without a hitch. simple. But this is f'ing AU, where oncos who lie to your face and sides with the drug companies to make a hell of a lot of money for them so they would obviously benefit too, but this very simple thing they wouldn't do. But I'm still looking, you never know.

The top guys in the health care system and the drug companies are basically a bunch of criminals, you need to be really smart to fight them. But never say never.

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I am sorry to hear this,I had 2 chemos and radiation at same time,if he has small cell this is what he should have It was a clinical 3 but even though I had it I would not be in the trial

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Thanks for sharing that . I'm a 6yr Small cell survivor. Yes we need more research. Now that they are removing and studying tumor from us more therapies will be found. It used to be a death sentence with limited treatment

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Congrats 6 years and I hope many many more

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