Treatment Crossroads

[Dyan721]

Hello,

I am finally posting after reading posts here for awhile. This is a fantastic site! In March I was diagnosed with NSCLC in my left lung with involvement in mediastinum and left axillary nodes. I have a HER2 3+ mutation (very rare I am told), moderately + for estrogen and PDL 10-20 %. I went through 6 rounds of Carboplatin &Alimta starting in May with good results (lung tumor shrunk & nodes resolved). I then was eligible to have SBRT on the lung (September) and am still awaiting scans. I also take a bunch of supplements through a naturopathic doctor. Recently I can feel the axillary node getting more prominent and my oncologist agrees. He gave me several options (Opdivo, Keytruda, afatinib, neratinib, durvalamab).

Does anyone have any experience with these especially the last 3? Am told that you stay on Opdivo or Keytruda forever?Feeling overwhelmed with this decision. I want quality of life and longevity. All help is appreciated!

[Steff]

Hi there!

I'm glad you are sharing your journey and questions with the group!  I wanted to chime in about Keytruda (even though it wasn't one that you were asking about the most). My mom has completed her 4th Keytruda/Chemo combo (carbo & Alimta) for a recurrence of lung cancer. She has a high expression of PD-L1 . She is really worn out, we are assuming it's mainly from chemo and the fact that she has been battling other non-treatment related health issues.  As far as Keytruda side effects, she has skin pigmentation changes - her moles are darker and she has what looks like a rash on her upper thighs, but it is just changing skin pigmentation.  As far as being on Keytruda forever, I only have 1 other personal reference.  My aunt has been on Keytruda for nearly 2 years for a recurrence of melanoma.  Although the type of cancer is different, the treatment is the same as well as the side effects.  She is very fair skinned and has had some skin pigmentation changes. She also has less energy, but she is a 3rd grade teacher in her 60's and can still chase them around her classroom.  Her doctors have told her that she may take a treatment break if her cancer is still in check when she hits the 2 year point.   As far as both she and my mom have been told, someone can continue to take Keytruda as long as it continues to work and the side effects are manageable/non-existent.

Hope this gives you a little info you are looking for!

[Tom Galli]

Dyan,

Welcome here.  

The medications you cited are all immunotherapy types and my chemotherapy took place from 2004 though 2007, well before immunotherapy drugs were introduced.  So I don't have any actual experience.  One caution however.  Ensure you report all supplements you are taking to your oncologist before you start immunotherapy treatment.  These are all new treatment drugs and there could be an interaction to the immunotherapy drug and supplement.

I had a form of SBRT that fried my tumor in 2007.  I'm hoping your post SBRT treatment scan shows a similar result.

Stay the course.

Tom 

[Dyan721]

Thank you Steff and Tom for your replies. I appreciate your helpful comments.

[Dyan721]

Ct scan update showed 2 mm of shrinkage on the primary tumor in the lung but 2 new small nodules (one on the left, one on the right). Also axillary nodes were slightly larger. Is it typical for new areas to emerge in the lungs? One of my Drs. thinks they are cancer while the other oncologist thinks they may be non cancerous nodules and related to the radiation. I️ am going to get a 3rd opinion and ask the radiation Dr. now. Iwill be finishing up Alimta and possibly starting Keytruda after that. Hoping to shrink the cancer again!