27 years old. Diagnosed with rare form of lung cancer

Great news. The targeted therapies are wonderful. Best wishes.

Igy

Very good news. I can see a recent study recorded a median PFS of almost 3 years. I see that there are suggestions that it would be possible to hop on to another existing available drug once it does not work anymore. That is indeed encouraging. Remember that there are alot of research in the field.

I had an MRI for a leg pain in the early 90s. They saw something in my head, and wanted me to stick around for a follow-up with another doctor.

I left the hospital. Never went back. Moved from that city and state a few months later. Have never gone back, nor gone to a doctor or hospital, or scan place. I told NOBODY this until just now. I'm 25 or so years older, and notice nothing health related out of the ordinary. I figure if I make it another 25 or so, I'm good with whatever. We'll see.

I haven't read through the entire thread but I'm interested to know if your tumor has been tested for PD-L1 expression. Some lung cancers have both ALK and PD-L1 mutations. If so, you may be a candidate for immuno anti-PD-L1 therapy.

Best wishes to you. I'm glad you're finding yourself feeling overall stronger. Keep your appetite up and rest, rest, rest. Let your robust immune system work on that cancer as much as possible. Being young and strong is a huge advantage.

Yes, i am pretty certain they tested for the PDL-1 mutation. I went up to Ohio state to get meet with a Dr. there and he ordered testing for just about everything and I know PDL-1 was discussed.

So I wanted to give an update for anybody that maybe interested, I have been on the targeted treatment for about 3 months and have had zero side effects to date. I am still feeling really well and running has gotten drastically easier, it’s crazy what extra space in your lungs will do. I recently had a CT scan performed and my cancer cells had already been reduced in size by 87% with many of the nodules that we’re seen now gone. I had signed up for CIM prior to my diagnosis and based off the way I was feeling decided to jump in and run it, I ended up running 3:29 after a rough last 5k. I’m still working full time and have not had a need to miss anytime other than a couple hours here and there for dr appointments. My wife is a saint I’m pretty sure has taken incredibly good care of me through all this, much better than I deserve. I appreciate all the support and prayers I’ve received on here!!

I'm so happy to hear this. Many prayers things continue to improve for you! Keep fighting the fight!

Hey good job. Amazing that you could run the marathon that fast. I have been struggling in my running after the radiation therapy ending mid-October (four weeks x 5 days). It seems like I have the most difficulty in the sustained 2-4 minutes at interval pace, but at least I am back to running regularly.

Keep us updated.

Igy

Hey OP, I know a guy who has some lung issue, can’t remember exactly what it is, a genetic disease or rare cancer. Anyways he was diagnosed when he was 18? Or so told he wouldn’t see 25, the guy is in his fifties but only has like 25% lung capacity. Anyways if you guys have the same thing or maybe not, but maybe he can help you in anyway....

Anyways his name is John Bernhard, I know all this cause last year he had a slide show, told his story, and at the end said the meds he now needed to take were beyond what he could afford. I can link you to him if you want.

Ghost of Igloi wrote:

Sprintgeezer wrote:

Here’s a link if you’re interested:

http://www.letsrun.com/forum/flat_read.php?thread=4428533

Read the whole thread past couple of hours. Sobering.

All-time best thread!

How difficult would it be to get this published in book form?

OP: really sorry you have to go through this, and thank you for sharing, sheds light and gives perspective. I wish you the best, stay strong!

OP, great news on how you're feeling right now! That's some great mileage and very impressive marathon time!

Much love and good vibes to you.

Igy best of luck to you as well!! I’ve found long slower runs to be very doable but am just now starting to feel more comfortable with anything quicker.

I have slowed quite a bit from a year ago 22:30 5k to 29:04. A large part of the problem is the weight gain from Prednisone, but I may have had weight loss from the Lymphoma. So definitely some balance to the body needs to be restored and that will take some time. I am running one day of intervals a week and that is starting to show some improvement. I am finding a little more rest between efforts is the order of the day. Keep us posted. I may need some type of targeted therapy if I relapse. Typically about 20% of patients with Follicular Lymphoma Grade 3a relapse within 24 months (POD 24 = Progression of Disease 24 months). Those patients turn to clinicals or CAR-T as the next step, or some variation of the first line treatment.

Igy

notmyrealnamex wrote:

I had an MRI for a leg pain in the early 90s. They saw something in my head, and wanted me to stick around for a follow-up with another doctor.

I left the hospital. Never went back. Moved from that city and state a few months later. Have never gone back, nor gone to a doctor or hospital, or scan place. I told NOBODY this until just now. I'm 25 or so years older, and notice nothing health related out of the ordinary. I figure if I make it another 25 or so, I'm good with whatever. We'll see.

Before my son was born an ultrasound seemed to show a potential problem with his skull development. The Doctor recommended a follow up ultrasound with a specialist. So we did that and he said everything was fine.

A second opinion does not mean they will turn you into a lab experiment you moran.

Very nice to hear that you have achieved a rapid highly significant partial response to treatment.

I read that the FDA has approved Lorbrena as a second line to your current treatment. Research is plentiful.

Stay strong!

sorry i was wrong, he doesnt have cancer, but still he is still crushing it

https://www.thoracic.org/patients/par/par-publications/patient-voices4/resources/PV4-JonBernhard.pdf

anyways he kept it pretty private around town it seems until his lung capacity got worse, really cool guy and listening to his slide show was pretty cool. never realized he was good at cycling, did hard ascents in el cap, etc...all the while was told he would die in a few years

Doctors are not always right. Many people have been told they would die of cancer. Decades later

they are still alive!

Consider this, if you had not went to a doctor would you believe you are dying of cancer?

Pray, eat right, exercise, repeat!!!

I will pray for you too.

Well, his current treatment offers a significant portion of complete response according to a phase III ALEX Trial. 2nd line treatment trials also have s little chunk of complete responses. Previous trials have demonstrated that complete responses are durable. As a partial response have been achieved certainly no oncologist would indicate that there is no hope.

Saw this thread updated when I was busy and meant to come back to tell you how great that news is. So: great news!

Also "they were both pretty decent" is about as high praise as a vegan recipe could ever earn as I see it!