Claudia

That is such awesome news Claudia! So happy for you.

Wow, this is a happy ending times one billion. Congrats!

Hi Everyone!
I'm sorry it's been a long time since I posted an update to my stage IV NSCLC story but here it is. After being told that I was non-surgical  because of being stage IV I am here to tell you that my oncologist and I have decided that the end of November will be my last treatment. After 3 1/2 years of chemo, Keytruda, SBRT radiation and finally a left upper lobectomy and 2 years of clean scans and more Keytruda I am being set free. November 4 will be 2 years that I am NED. I can't believe it. Stage IV and now NED for 2 years. I feel like the luckiest person on the planet. It just goes to show that treatments are getting better and patients are living longer. Never give up. NEVER. 
Thanks for all the support through this insane journey. I love you all.
Claudia

Hi Everyone!
I'm sorry it's been a long time since I posted an update to my stage IV NSCLC story but here it is. After being told that I was non-surgical  because of being stage IV I am here to tell you that my oncologist and I have decided that the end of November will be my last treatment. After 3 1/2 years of chemo, Keytruda, SBRT radiation and finally a left upper lobectomy and 2 years of clean scans and more Keytruda I am being set free. November 4 will be 2 years that I am NED. I can't believe it. Stage IV and now NED for 2 years. I feel like the luckiest person on the planet. It just goes to show that treatments are getting better and patients are living longer. Never give up. NEVER. 
Thanks for all the support through this insane journey. I love you all.
Claudia

Hi Everyone!
I'm sorry it's been a long time since I posted an update to my stage IV NSCLC story but here it is. After being told that I was non-surgical  because of being stage IV I am here to tell you that my oncologist and I have decided that the end of November will be my last treatment. After 3 1/2 years of chemo, Keytruda, SBRT radiation and finally a left upper lobectomy and 2 years of clean scans and more Keytruda I am being set free. November 4 will be 2 years that I am NED. I can't believe it. Stage IV and now NED for 2 years. I feel like the luckiest person on the planet. It just goes to show that treatments are getting better and patients are living longer. Never give up. NEVER. 
Thanks for all the support through this insane journey. I love you all.
Claudia

Hi Everyone!
I'm sorry it's been a long time since I posted an update to my stage IV NSCLC story but here it is. After being told that I was non-surgical  because of being stage IV I am here to tell you that my oncologist and I have decided that the end of November will be my last treatment. After 3 1/2 years of chemo, Keytruda, SBRT radiation and finally a left upper lobectomy and 2 years of clean scans and more Keytruda I am being set free. November 4 will be 2 years that I am NED. I can't believe it. Stage IV and now NED for 2 years. I feel like the luckiest person on the planet. It just goes to show that treatments are getting better and patients are living longer. Never give up. NEVER. 
Thanks for all the support through this insane journey. I love you all.
Claudia

Hi Everyone!
I'm sorry it's been a long time since I posted an update to my stage IV NSCLC story but here it is. After being told that I was non-surgical  because of being stage IV I am here to tell you that my oncologist and I have decided that the end of November will be my last treatment. After 3 1/2 years of chemo, Keytruda, SBRT radiation and finally a left upper lobectomy and 2 years of clean scans and more Keytruda I am being set free. November 4 will be 2 years that I am NED. I can't believe it. Stage IV and now NED for 2 years. I feel like the luckiest person on the planet. It just goes to show that treatments are getting better and patients are living longer. Never give up. NEVER. 
Thanks for all the support through this insane journey. I love you all.
Claudia

Welcome Mary Kate!
Like you, I had a recurrence after a difficult surgical journey. Unlike you, my lung cancer is squamous cell and there are no targeted therapies for that strain of lung cancer. I've known a lot of folks who've had great results with Tagrisso and really hope you become one of these folks.
Stay the course.
Tom

See, by the time you actually get your infusion, it will be anticlimactic, lol. You won't even be worried, you'll just be relieved to get started.
Any word yet from your neurosurgeon re the port?
 

Hey Ale, I have been following your thread and I know of your issues. Whereas, I'm sure you feel this has all hit you from straight out of the blue, you have to know too that you have some advantages in beating this thing flat out. You're young and you have a wellspring of energy that most of us can barely remember. That and I would trade my 64 yr. old immune system with yours in a heartbeat!! And one last thing...you will probably live long enough to see not just treatments for but actual cures for cancer.
As for now though, I too am in the midst of a four course chemotherapy treatment plan of Carboplatin/Alimta. My first infusion was on 4/5 and some of the side effects from day two through day seven after infusion were kind of rough. The nausea was manageable only with anti-nausea meds (Zofran) on three of those evenings, but you want to watch taking those meds as they will definitely give you constipation. I found that if you keep your eating to small amounts, eat only bland foods, and liberally eat crackers (saltines, graham, animal, etc.) when you start to get even just a little queasy, there's a lot less chance of getting sick. The other problem I had during this period was pretty hard core fatigue. Now there is really literally nothing you can do about that except just give your body a rest and just plain relax. Have faith that your body will come back...from day seven to day eight was like night and day in my energy levels. My energy came back just like that; it was amazing. But know that even after the worst of the side effects are over, that does not mean they are all over. The remaining two weeks before the next infusion consists of other side effects that are not as prominent, but can even be possibly more deadly. I've had somewhat of a bloody nose lately and I'm told that there is a much greater chance of infection of any open wounds that may occur during this period.
The above just shows that while chemotherapy is no walk in the park, it is survivable. You'll do fine and with your above stated advantages, probably better than me... Stay positive and in the fight!!

NED is wonderful News. I'm so happy for you. Peace, light and great scans to everyone, Claudia
 

Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...
Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  
My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.
I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  

Katum31,
Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
Take care,
Steff