New to the group

[OBXGigi]

I was diagnosed with stage IV NSCLC in April after having a cough that wouldn't go away and being put on antibiotics and steroids for bronchitis.  My doctor was avoiding an x-ray with the start of Covid-19 but after two rounds of antibiotics I asked for the x-ray thinking it was pneumonia.  The x-ray showed my lungs were full of miliary nodules and at first they thought it was likelya bacterial infection. A CT scan showed there was a tumor in my lower left lobe.  A bronchoscopy revealed the tumor had spread metastasized to both lungs with the tiny nodules throughout both.  The lymph nodes near the main tumor were also affected.  My biomarker is Her-2 which is only found in about 2% of lung cancers.   I am a non smoker and am 61 years old.  I had walking pneumonia two years ago.  I had no cough or signs of being sick and had a lot of chest pain.  During the visit they did a CT scan and I was diagnosed with pleurisy and walking pneumonia.  After my cancer diagnosis we requested the CT scans from that diagnosis and the scans and chest X-ray show the tumor and the radiologist missed it.  It was stage I then.  So disappointing to discover it had been there and missed.  After my diagnosis in April I went to Duke for a consultation about a targeted pill therapy they have as a study.  It was intense and the physician said most people drop out from the severe side affects.  I stuck with the traditional treatment knowing if I complete the standard of care I can qualify for the Inhertu trial. I initially had four rounds of carboplatin, Alimta and Keytruta then scans and had a good response with the main tumor shrinking by 50%.  The radiologist noted the miliary nodules were smaller in size(they are too small to measure) and there was more white space on the scan.  So far it hasn't moved outside my lungs.  With the favorable response I am now on what they call maintenance therapy with the Alimta and Keytruta.  I have continued to have fatigue even after the Carboplatin stopped but my doctor told me at my last visit to try Ginseng capsules and I have seen a huge difference.  Haven't even needed a nap which is amazing.  I have my 8th round this Wednesday and look forward to my next scan.  My husband is a radiation oncologist so I feel lucky to have someone with all his knowledge help me through this.  He is part of the same cancer institute where I receive my care.  He is a wonderful nurse as well as doctor and has taken the best care of me.  I feel so fortunate that he can answer questions for me but he hasn't actually had the disease so I look forward to learning from others like me.  I have only recently found this group but have connected to others since my diagnosis that have been through chemotherapy for all their tips and suggestions.  I have done every proactive thing to help with side affects I could find.  Overall I feel really good.  I still cough as my body tries to clear what is in my lungs.  My doctor had read about Neuraptine helping with the cough and I tried it back in May.  It worked great for me initially and the cough was completely gone.  In the past few weeks it seems to have come back even with the medicine.  

[LouT]

OBXGigi,

Hello and welcome to our forum.  You sure have gone through a lot in a short time with this disease.  I want to welcome you to the group and let you know that you'll soon be hearing from others regarding their experiences with all sorts of chemotherapy.  We also have a forum called Chemotherapy that can be found here and you should check it out for some information and to hear of others' experiences.   In my case my LC was handled with surgery w/o chemo needed at this time.  Please ask any questions you may have and we'll be happy to help you out.

Lou

[BridgetO]

Hi and welcome.  I'm sorry to hear about your diagnosis and glad to hear your treatment is working well. There are a couple of other people on these forums with HER 2. I hope you'll hear from them. 

Bridget O

[GaryG]

Hi OBXGigi: Welcome to our group and thank you for sharing your story.  It is great to hear that your cancer is shrinking and that you are feeling good. We have few patients on the triplet (Carbo, Alitma, Keytruda) but you are far ahead of most of us in seniority when  treatment wise. We try very hard to help one another and to assemble as much knowledge as possible about the triplet.  Please do not hesitate to visit and visit often. We are glad you joined and hope to share our experiences for the good of all. 

GaryG 

[Judy M2]

Hi OBXGigi, so sorry you've had to join us but you've come to the right place.

I was diagnosed with NSCLC last October after a few months of mis-diagnosis. However, while going through my medical records after diagnosis, I realized that a chest CT scan from January 2019 showed a mass in my left lung that was missed by my primary care physician. I could be upset at those 10 wasted months but I've had to let it go and just deal with reality. 

It sounds like you've made good progress in your treatments and you are so fortunate your husband is in the field. Here's hoping your next scan shows continued improvement! 

[OBXGigi]

Thank you all for the warm welcome.  

 

[GaryG]

OBXGigi: If all possible, please post the results of your up coming scans. I hope and pray they show good progress.

[Lisa Haines]

Welcome to the Group, nice to meet you, but wish it was not because of cancer!    I hope you'll do with on the Triplet.  I started on Carbo and Alimta and eventually moved on to Immunotherpay (Nivolumab) which was my life saver.  I'm a Stage IV NSCLC patient and very happy to now be stable and off all treatment (Four years and counting).  Wishing you the very best!

Take care and be well,

  Lisa

 

[Lin wilki]

ObGxGigi

Not going to go back to the what if’s. Been there. Since you are HER2 I would dig a little deeper. I was so new to all this and too numb when told no immunotherapy will work and no more radiation since they did so much at the start  Was not aware of differences in HER2. A FB page for HER2 has talked about other drug possibilities. Enhurtu and Pozi  I will ask my oncologist about them - wish we had talked about possibilities before Kadcyla stopped working. My oncologist was not encouraging about options. A trial (which she said is a crap shoot) or Gemzar. She said we’ll talk more after PET and biopsy 

Keep posting. Good people here and good info

[OBXGigi]

Thank you for your help.  My oncologist was looking at Enhurtu and because of my response after four rounds of the six before you could be considered, I was not a candidate.  I see my oncologist today and will ask.  I'm hoping since Enhertu is an approved drug for breast and gastric cancer that it moves out of the trial level pretty quickly.  My oncologist main concern was the lung issues enhertu causes in patients and my lungs already have enough issues.  Thanks for the note. I hadn't heard of Pozi.  

[OBXGigi]

13 hours ago, Lisa Haines said:

Welcome to the Group, nice to meet you, but wish it was not because of cancer!    I hope you'll do with on the Triplet.  I started on Carbo and Alimta and eventually moved on to Immunotherpay (Nivolumab) which was my life saver.  I'm a Stage IV NSCLC patient and very happy to now be stable and off all treatment (Four years and counting).  Wishing you the very best!

Take care and be well,

  Lisa

 

This is so encouraging to read!  How long did you do immunotherapy? I showed improvement after four rounds and they took away the Carboplatin and today is round 8 with immunotherapy and Alimta.  How many rounds of Alimta did you have?  Does the immunotherapy give you side affects?  

[OBXGigi]

On 10/19/2020 at 10:02 AM, Judy M2 said:

Hi OBXGigi, so sorry you've had to join us but you've come to the right place.

I was diagnosed with NSCLC last October after a few months of mis-diagnosis. However, while going through my medical records after diagnosis, I realized that a chest CT scan from January 2019 showed a mass in my left lung that was missed by my primary care physician. I could be upset at those 10 wasted months but I've had to let it go and just deal with reality. 

It sounds like you've made good progress in your treatments and you are so fortunate your husband is in the field. Here's hoping your next scan shows continued improvement! 

Agree but I went from stage one in the scan two years ago to scan four from the miss. They would have been able to remove the lower left lobe.  I now have hundreds of tiny nodules scattered throughout both lungs and lymph nodes involved .  It isn't just wasted time but the mistake will shorten my life considerably. I am just accepting it for what it is and I can't go back but I can advocate it doesn't happen again.   In my case and in yours it is the radiologist that missed it.  All scans are read and reported by radiologist  Mine is visible to every oncology and pulmonary doctor at Duke and Prisma Health.  The radiologist gave the emergency room the diagnosis reading it remotely and it was put in my chart and passed on.  I am filing something against the radiologist so hopefully he does better in the future.  I hope this never happens to anyone else. It has been verified as a medical error on his part.  

[Judy M2]

Your medical error is far worse than mine, so I appreciate the perspective. In my case, the radiologist did report the mass. Whoever looked at the report in my PCP's office somehow missed the remark. (I wasn't under an oncologist's care at the time.) 

I'm so very sorry that this happened to you. 

[OBXGigi]

On 10/21/2020 at 5:15 PM, Judy M2 said:

Your medical error is far worse than mine, so I appreciate the perspective. In my case, the radiologist did report the mass. Whoever looked at the report in my PCP's office somehow missed the remark. (I wasn't under an oncologist's care at the time.) 

I'm so very sorry that this happened to you. 

 

On 10/21/2020 at 5:15 PM, Judy M2 said:

Your medical error is far worse than mine, so I appreciate the perspective. In my case, the radiologist did report the mass. Whoever looked at the report in my PCP's office somehow missed the remark. (I wasn't under an oncologist's care at the time.) 

I'm so very sorry that this happened to you. 

I'm so sorry to hear that happened, that is terrible.