Rosie77

Hi June! 
 
I’m Rosie, diagnosed with stage 3 squamous cell NSCLC. My oncologist suggested Opdivo and Yervoy for my specific cancer because the cells that make up my tumors are similar to the ones found in melanoma patients. 
 
Similar to your situation, I had my second infusion of Opdivo on Sept. 8th.  Five minutes into the treatment, I also felt the sharp pain on my lower back. I had to request to pause the infusion. The nurse said this was unusual, she said maybe I just needed to adjust my position. She put a pillow behind me and continued my treatment. A few minutes in, and the pain returned, it made me curl on my seat. The doctor on the floor ordered a dose of steroid iv which helped. I decided to finish the treatment. 
 
I did some research and found out this was a common side effect from immunotherapy, particularly Opdivo. I found this on the Mayo Clinic site when I looked up Nivolumab (Opdivo) and back pain was first on the list of common side effects. 
 
For my next infusion on Sept. 29, my oncologist prescribed an IV of Benadryl before my treatment to prevent this. He did not want to give me steroids because it would affect the effectiveness of the immunotherapy.
I hope your next infusion goes well, maybe they’ll give you the same pre-treatment to reduce any side effects. Hopefully our Opdivo treatments work well to rid us of this cancer, that the pain we felt was just a bump on the road to our healing/recovery.

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

Hi June! 
 
I’m Rosie, diagnosed with stage 3 squamous cell NSCLC. My oncologist suggested Opdivo and Yervoy for my specific cancer because the cells that make up my tumors are similar to the ones found in melanoma patients. 
 
Similar to your situation, I had my second infusion of Opdivo on Sept. 8th.  Five minutes into the treatment, I also felt the sharp pain on my lower back. I had to request to pause the infusion. The nurse said this was unusual, she said maybe I just needed to adjust my position. She put a pillow behind me and continued my treatment. A few minutes in, and the pain returned, it made me curl on my seat. The doctor on the floor ordered a dose of steroid iv which helped. I decided to finish the treatment. 
 
I did some research and found out this was a common side effect from immunotherapy, particularly Opdivo. I found this on the Mayo Clinic site when I looked up Nivolumab (Opdivo) and back pain was first on the list of common side effects. 
 
For my next infusion on Sept. 29, my oncologist prescribed an IV of Benadryl before my treatment to prevent this. He did not want to give me steroids because it would affect the effectiveness of the immunotherapy.
I hope your next infusion goes well, maybe they’ll give you the same pre-treatment to reduce any side effects. Hopefully our Opdivo treatments work well to rid us of this cancer, that the pain we felt was just a bump on the road to our healing/recovery.

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

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

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

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

Hi June! 
 
I’m Rosie, diagnosed with stage 3 squamous cell NSCLC. My oncologist suggested Opdivo and Yervoy for my specific cancer because the cells that make up my tumors are similar to the ones found in melanoma patients. 
 
Similar to your situation, I had my second infusion of Opdivo on Sept. 8th.  Five minutes into the treatment, I also felt the sharp pain on my lower back. I had to request to pause the infusion. The nurse said this was unusual, she said maybe I just needed to adjust my position. She put a pillow behind me and continued my treatment. A few minutes in, and the pain returned, it made me curl on my seat. The doctor on the floor ordered a dose of steroid iv which helped. I decided to finish the treatment. 
 
I did some research and found out this was a common side effect from immunotherapy, particularly Opdivo. I found this on the Mayo Clinic site when I looked up Nivolumab (Opdivo) and back pain was first on the list of common side effects. 
 
For my next infusion on Sept. 29, my oncologist prescribed an IV of Benadryl before my treatment to prevent this. He did not want to give me steroids because it would affect the effectiveness of the immunotherapy.
I hope your next infusion goes well, maybe they’ll give you the same pre-treatment to reduce any side effects. Hopefully our Opdivo treatments work well to rid us of this cancer, that the pain we felt was just a bump on the road to our healing/recovery.

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

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.

I had my 2nd chemo treatment yesterday. It didn't go quite as well as the first but thankfully everything turned out OK.
About 10 minutes into the Opdivo I started having severe lower back pain. It went from nothing to very bad in about 20 seconds! They stopped the drip immediately, then gave me an injection of Benadryl and a big dose of more steroids of some kind, I forget the name. The pain stopped almost immediately. They called the oncologist to see if treatment should continue (he's usually there but just had a baby so had a fill-in today & she wanted to check with him). He wanted to try again ("challenge it" is how they put it) and I was glad of that. I didn't want to have to give up on this drug so soon! So they waited another 30 minutes and started the infusion again with a reduced drip rate. Everyone held their breath to see if the pain returned, but it did not and I did fine. Everything went smoothly after that. What a relief! They said from now on they would start with the Benadryl & use the slower drip rate. It still worries me a bit because the hope was to be on the immunotherapy (Opdivo) for a long time. I wonder if since I already had an issue are there more likely to be problems in the future? Has anyone else has had an experience with this? 
I've also noticed most people on here talk about Keytruda or Imfizi when given immunotherapy. Makes me wonder why they are using a different one for me. Future questions for the oncologist I guess. I do remember him talking about some recent study when we first went over my treatment plan.
Best to all,
June
 
 

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.

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!

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. 

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

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

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.
 
 
 

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