New to this site

[RosieSD]

Hi, I’m Rosie. I just got diagnosed with stage 3 NSCLC. I’m a mom to a 4 year old girl, and work as a substitute teacher here in San Diego, California. I went through diagnostic tests and scans and was surprised at the results since I was a non-smoker and lived mostly a healthy lifestyle. I have a few small tumors on my lower right lung, and two enlarged lymph nodes  on my right collarbone.
 

My oncologist gave me options for treatment, namely chemo, chemo-immuno combo and firstline immunotherapy. I chose to do immunotherapy, a combination of Opdivo & yervoy.   I received my second dose of Opdivo yesterday, and had a bad reaction early into the infusion. I started to feel a sharp pain in my lower back. The nurse paused the infusion, adjusted my position and restarted the drip. A minute passed then I felt the pain start again, so I was given a steroid drip to ease the pain. We continued to finish the Opdivo treatment.  I was told that I would need an IV of benadryl before my next infusion to take care of any side effects.

There are times I get depressed and worried that I wouldn’t be around to care for my daughter or watch her grow. Then there are times I would think about her, and I would feel a sense of resolve that I can endure the treatments, and that there’s hope at the end of all of this. I learned to treasure every moment I have with my girl. Now I’m holding on to hope that I’m on my way to being fully healed. 

[Justin1970]

Hi Rosie 

Welcome to the forum so sorry your going through this, it really is a very hard time, I had a few problems during the treatments but eventually everything settled down and you will start to feel better, goodluck with everything, and keep holding on to your hope, 

All the best 

Take care Justin x 

[Laurel77]

Hi Rosie!

I am also stage 3 NSCLC with nodes near the collarbone. Our cancers are almost identical! However, I am still waiting for treatment after being diagnosed on July 26th. Chemo and radiation start next week.

After the initial horror of my diagnosis, the fear and anger have diminished, although I still have a relapse now and then. I now have a great hope of being cured of this hideous disease. Treatment today is FAR better than before. My doctors tell me that in the past 5 years, cancer treatment has advanced more than it has in the past 50 years. Uplifting news, eh?

I have a friend with breast cancer who went through the exact scenario you describe.  She also said that a benadryl IV was recommended, although she was already taking Claritin for her allergies, and with these two drugs combined they completely eradicated any back pain. Who knew?!

Peace and love to you. We WILL get through this.

 

 

 

[LouT]

Rosie,

Welcome to our forums and sorry that you need to be here.  A lung cancer diagnosis is certainly one of the hardest things we ever go through in our lives so we understand your feelings.  My treatment was surgical so I can't share my experience with any chemo or immunotherapy, but others here can and surely will.  In the meantime I can point you to some information that will be helpful to you on this journey. 

First, a blog titled; "10 Steps to Surviving Lung Cancer; From a Survivor".  It contains excellent information, written by an 18-year survivor of Stage 3 and Stage 4 lung cancer.  It can be found here.

Second, is a forum on "Immunotherapy" where you may find useful information on the treatment.  That is on this page.

Stay strong and please understand that Lung Cancer is no longer the automatic death sentence that it once was.

Lou

[Chuck K]

Hi Rosie

I think of love ones and friends that didn't have the opportunity of these new treatments. I am so lucky my cancer was found by a new hire physical when I changed jobs. I was stage 4 now no cancer is lighting up on pet scan. So hold your daughter close and know that you will beat this. Hope is real

Chuck

[Judy M2]

Hi Rosie, I am in San Diego too! I was also diagnosed at Stage 3 (3b to be precise), in October 2019. Who is your oncologist? I go to cCare in 4S Ranch and San Marcos, and my wonderful oncologist is Dr. Steven Eisenberg. 

You don't say whether your biomarker testing revealed any genetic testing. I have an EGFR mutation that has caused my lung cancer. I've been through chemo and radiation and then started on a targeted therapy pill in March 2020. I have No Evidence of Disease and am coming up on my 3rd cancerversary. 

When I went through chemo, part of the infusion process was a nice dose of IV Benadryl. I got nice naps out of that, and it was the best part of chemo day. 

Research is giving us lots of options and hope these days for living with lung cancer. Hang on to that hope and learn as much as you can about our disease. 

[LilyMir]

Hi Rosie, sorry you have to join our group but a warm welcome to you. I am sure you will find this forum extremely helpful and full of great people. I too was stunned with a lung cancer diagnosis this year as I had no risk factors. I also have a 6 year old and worry about him every single moment. The shock will slowly decrease and you will soon start focusing on your treatment and healing. Take it one step at a  time, this is how I manage my fears and worries but it is very hard, I know.

Please ask for biomarker testing if they have not done that for your already. Did they do a biopsy and molecular tests on that?

I have the EGFR exon 19 mutation, which is targetable with a very new drug. 

Wishing you all the best, stay hopeful!

[Susan Cornett]

Hi Rosie - 

I'm sorry about your diagnosis but glad you are here. This forum was the first place I turned after I was diagnosed. So much has changed over the last few years - so many new treatment options now. I was diagnosed with stage iv in February 2016 and had 2 recurrences. Treatment was rough but it worked. I've been cancer-free for 4 years now. I don't have kids so I can't truthfully say that I understand what you are feeling, but I am only child of an only child. My first thought in all of this was wondering who would take care of my parents. I cried, cursed, and had a few breakdowns along the way but I also leaned on others. That's why we're here for you - we've walked your path. Ask us anything. We're here for you.

[Karen_L]

Hi Rosie! Welcome to one of the best lung cancer forums on the web. I, too, had no risk factors, never smoked, etc. Who knows what happened. What matters is today.

You'll find that there's a lot to learn on this little lung cancer road we're on and that learning becomes easier as you grow more accustomed to having a lung cancer diagnosis. I know I was in shock for a long time. Learning helped me feel like I had at least a little grasp on what was happening. 

I want to join my voice to the queries about biomarker testing. The immunotherapies you're being treated with are specifically for patients who are "positive for PD-L1, but do not have an abnormal EGFR or ALK gene." Do you know what your biomarkers are? You might find this information about biomarkers useful.

[Rosie77]

Thank you everyone for your warm welcome and support. I’m encouraged by your journeys and outcomes, and  I could really feel a sense of community.
 

Regarding my biomarkers, I asked my oncologist about any mutation seen from my tumor tissue biopsy. He just let me know I had stage 3 squamous cell nsclc, which presented no mutations. He informed me I didn’t qualify for the targeted treatments for Egfr, alk mutations.  

He was baffled at the type of my cancer since it’s usually the type attributed to smokers. I was puzzled myself, and wondered if I had any prolonged exposure to cancer-causing       materials like radon. I’m trying to focus now on my treatments, my third infusion of Opdivo and yervoy is scheduled for September 29. I’ll be having my blood work done 2 days prior. Hopefully, with the Benadryl drip I wouldn’t have the side effect of sharp back pain that I felt on my last infusion. Thank you once again, I’ll continue to give updates.

Stay positive… Rosie

[JuneK]

Hi Rosie,

I just wanted to check in and see if you have been able to continue with the Opdivo & Yervoy treatments? I hope and pray treatments are going well and will bring you some positive results. I have my 6th Opdivo treatment this Thursday. I don't dread it as much now that we have dropped the chemo, but there is always some anxiety about the possible pain reaction and the worries as to how long the treatments can be tolerated.

Please give us an update when you have the time.

Sending love & prayers - June