Stage 4 Non-smoker & Tagrisso

[Wendy509]

  
My husband has never smoked, healthy, active 54 year old. On April 17,2018 he was having chest pains which I told him it was just a panic attack go to bed your fine! We have 3 kiddos 21, 13, & 12 he had a disagreement with the youngest that got everyone in the house in an uproar and my husband was very upset that’s why I assumed it was a panic attack. He woke up at 6:30am and was still having pain in his chest, more on the left side he kept saying he thinks he broke a rib! So I told him I would take him to the emergency room when I got back from taking the kids to school. Well he didn’t wait for me and drove himself to the hospital, which is 45 minutes from home. He called me around 11am and said they were doing scans on him and he was fine I didn’t need to come to the hospital. Around 1:00pm he called and just blurted out he has lung cancer! I didn’t believe him and we’re both still in shock! I also want to add for 6 months he was having shoulder and arm pain on his right side. The oncologist still thinks it was a work related injury ( he’s a mailman). After all the blood work which all his blood work was fine, had CT scans and MRI’s they confirmed he had a mass in his left lung right near his 3rd rib and confirmed a mass in lower right lung, lower spine a mass and lesions up his spine, pelvic, and tailbone (which may be his lower spine?) basically they said he had lesions all over lungs, ribs, spine, pelvic, and tailbone. He had a fine needle biopsy which they took from his pelvic because it was to dangerous to take a biopsy from the lung the doctor didn’t want to cause a bleed or collapse a lung it was in a complicated place and unable to remove mass with surgery. After waiting 2 weeks our final diagnosis on May 2, 2018 is Adenocarcinoma lung cancer in both lungs stage 4 with bone metastasis to ribs, pelvic, tailbone and spine. The oncologist prescribed Tagrisso 80mg a day, he said target therapy is the best line of treatment at this time. He started that on May 16, 2018 after dealing with the insurance company to get it approved. When I spoke with the oncologist when trying to figure out what was taken so long, he made a comment to the fact that he needs this medicine even if it’s only going to help 8months. I didn’t really understand or question why he said that because when we were in his office he said my husband would be on Tagrisso as long as its working. So I’m not sure if he was just saying that in general or is that how long Tagrisso usually works? Our next appointment is June 1st, and I need help or ideas on how to ask questions, we don’t have a prognosis, or when the next scan is to see if he’s responding to Tagrisso.  Are we suppose to be doing things we always wanted to do or do we have a lifetime? Thanks for listening to me ramble, Wendy

 

[BridgetO]

Hi Wendy and welcome here.  I'm sorry to hear about your husband's diagnosis.  I can imagine what a shock that must have been! Here's a link to a place on the main Lungevity website that suggests  questions to ask your doctors. https://lungevity.org/for-patients-caregivers/asking-right-questions/questions-to-ask-your-healthcare-professionals. Also on that site is a section on targeted therapies  at https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy. Ths has info on EGFR inhibitors (which Tagrisso is) and also questions to ask about targeted therapies.

I think there are some people on these forums  who are taking Tagrisso and I hope some of them will respond to your post. You could also put a post in the NSCLC group and title it "Tagrisso" and specifically ask for anyone taking it to respond.

Hang in there. These forums are a good place to find information and support. We are here for you.

Bridget O

[Tom Galli]

Wendy,

Welcome here.  I don't have a clue why your husband's oncologist would suggest that Tagrisso only works for eight months.  But here, here and here are all first hand accounts of stage IV adenocarcinoma who are having a good response to Tagrisso.  There are more.  I didn't want to fill up the response with links.

But, that said your doctor will be challenged to give you a definite prognosis. In my treatment tenure I had one prognosis and it was about 6-months of remaining life.  Yet, in February, we celebrated 14 years of surviving a late stage lung cancer diagnosis.  I've have been presenting with no evidence of disease (NED) for 11 years but despite that lengthy period, I still have a scheduled oncology consultation twice a year.  That is prudent because lung cancer often returns, even after long periods of time.  So my prognosis is continued uncertainty and I've had to build a life that takes uncertainty and the future into account.

My solution is to live in each day.  The only future event I look forward to is our next scheduled vacation.  We've got two scheduled this year and one in 2019.  What I am doing is living with lung cancer.  Many of us here do so.  Here is a short essay that captures how I cope with living with lung cancer.  Most importantly, If I can live, so can your husband.

Stay the course.

Tom