Newly diagnosed and on Oral Chemo treatment

[Ronu]

Hi 

My husband is diagnosed with non small cell (NSC) Adenocarcinoma with EGFR mutant exon 18 and exon 21 lung being the primary, metastases to bilateral lung, bone, brain and right choroid in August 2019. It all started in Jan 2019, where he started noticing blurriness in his right eye and when they found lesion in the eye. It was thought to be TB in the eye and was treated for 3 months. Then when there was no improvements, further research was done.

He went through the lung biopsy and MRI of whole body. Before the mutation match, he went through radiation therapy for his spine T7. After the genetic match, he's on Tagrisso for 8 weeks now and 'NO' other treatments. His current painful side effect is rib where the vertebral column starts and is consistent from past 4 days now. Other side effects being, dryness in skin.

His first scan was a month after he started oral chemo and lesions have reduced by 50% and his vision is better now.

I'm here to know if someone else on the same treatment/ facing similar side effects and how you have been managing them?

Thanks

[MBinOregon]

Hi Ronu,

Sorry to hear your husband's diagnosis.  So a couple of FYI (if you know/get familiar with some terms, it'll be easier to navigate, not only this site, but the cancer journey itself) - NSCLC = non small cell lung cancer.  Tagrisso is the targeted therapy for EGFR folks.

My mutation is not EFGR, but if you go to the sub forum for EFGR within this site (here), you'll see lots of discussions on Tagrisso.  Whether you post there or here, we'll find it, but might be helpful read on that thread.  I'm sure EFGR folks will chime in soon 😉

MB

[Tom Galli]

Ronu,

I'm so very sorry to learn of your diagnosis.  Welcome here!

You mentioned his course of Tagrisso for 8 weeks and a first scan a month after Tagrisso start. Normally there is a mid-treatment scan; when is that scheduled? I hope the rib pain is not a new met. If the scan shows a met in the rib as a new metastatic lesion. SBRT would reduce the pain. Alternatively, has he been coughing? Excessive coughing sometimes causes broken ribs. I'd report the rib pain to his physician.

Can anyone on Tagrisso report on results and side effects management?

You asked about my treatment story. See the footnote at the bottom of this thread and you can read the book or abbreviated version.

Stay the course.

Tom

[Ronu]

Thanks for the responses.

His next scan is in mid december. His cough has reduced a lot almost not coughing at all. He has ECG and other lab work next week. Could ribs pain be anything related to heart? Any other Tagrisso users have experienced it?

Talked to nurse, still waiting for the response.

[Rower Michelle]

Hi Ronu,

I have a different mutation but also take an oral drug that is similar to Tagrisso.  These inhibitors do have all sorts of odd side effects that impact every one differently. 
I had both rib & spine pain shortly after starting my therapy, end result was a broken rib from the coughing spasms & the back pain was part of the healing process. These drugs treat bone metastasis very well and then the muscles need to heal as well.  Takes a while to get through it. For me it was about 4 months to be pain free. I get weekly acupuncture, myofacial release message and receive an off label medication, Low Dose Naltrexone to reduce inflammation. 
 

Another resource you might be interested in is Facebook, there’s a big EGFR community on line. Plenty of Tagrisso users around the world. 
 

You’re doing the right thing by reporting this to the nurse.  They really do need to know about any symptoms so that they can be managed.  
 

Welcome to our group!

Michelle

[Ronu]

Thanks Michelle! This helps. Nurse suggested over the counter anti acidity medicine like tums/Zantac. He is having it for 2 days now but not helped much.

Can you please suggest where I can get  Low Dose Naltrexone?

 Thanks