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Robert  A.

Pet scan & pathology results back

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My wife had her PET scan this morning and the Oncologist gave us the results 2 hrs. after. The Dr. also had the biopsy results. The Dr. said was was non small cell and gave us a stage 3 b. The mass is too large for surgery right now so she is going to give my wife 4 rounds of chemo along with immunotherapy . She said after that they will see if radiation or surgery or pill therapy would be next. The Dr was very confident she could help us especially since my wife never smoked (whatever that means) but she's very confident and so are we. We feel a lot more at ease now that a diagnosis has been given along with a course of action. The chemo starts next week.

 

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Hi Robert,

This is a good outcome, Stage 3B is fairly rare as most lung cancers are diagnosed at Stage IV.  The key here is treatment is administered with curative intent. Because it’s rare, the treatment plan can be pretty complex so when the biomarker tests come in you may very well want to get a second opinion to ensure your wife’s treatment plan is well positioned for the long term. 
 

The never smoker comment means your oncologist has a hunch about the possibility of a biomarker.  Approximately 60% of newly diagnosed lung cancers occur in never smokers.  For some unknown reason the never smokers are more likely to have a genetic driver, oncogene, biomarker, driver mutation (all means the same thing Ugh!) which responds to pills called targeted therapy.  There are 9 biomarkers that have targeted therapy, the most “common” are called EGFR, ALK, ROS1 or KRAS as a few examples. 
 

The only real question I would ask about in this scenario is the rationale for immunotherapy.  I would really push on this as it’s being discovered immunotherapy (IO) does not work if there is a biomarker present and in fact may be harmful.  If you wife has ALK then immunotherapy will be of zero help, probably the same for EGFR and ROS1.  
 

The chemo isn’t a piece of cake however the medical team will do everything to make this manageable, your wife will need to over communicate   during treatment there’s no need to power through, there’s so much that can be done to address chemo side effects.

Keep us posted as you can so we can jump in to help.  All of this is really good news.

Michelle

 

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Hi Robert,

Ditto to what Michelle said + I wonder since the biopsy is done, why aren't they waiting for the gene testing to be done first?  I waited 2 weeks for the result to come back, but was assured NSCLC doesn't grow fast - my 3rd med onc actually told me my cancer started probably 5-7 years prior to the diagnosis (I'm also NSCLC 3B with ROS1 mutation).

Especially for those us with any genetic mutation, I was told that chemo is far, far less effective than targeted therapy AND (more importantly) depending on your insurance, if they start you with chemo first, you may have to fight the insurance company to switch that over to targeted therapy.  Something to think about.

Let us know if we can help you.

MB

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I may have misunderstood the Dr's. treatment plan, I know she ordered the bio marker testing and maybe she is starting with chemo 4 rounds then adding immunotherapy. The chemo starts next week I will ask her to clarify then.

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Hi Robert,

I think you understood the proposed treatment plan correctly as the typical standard of care calls for a chemo/immunotherapy combo.  
 

What MB and I are saying is Stage 3B is not typical and the biomarker result is very critical to a successful outcome.  On YouTube, the GO2FOUNDATION has a two hour program called the Lung Cancer Living Room.  The October video features one of the best oncologists in the world, David Ganderra MD.  The essence of Dr G’s talk is about precision medicine.  He is dismayed about the number of patients who received chemo prior to biomarker results.   
 

If your wife has a biomarker then the treatment plan becomes more complex as oncologists sub-specialize in these “mutant” cancers  

I have the ALK mutation with a team of three doctors to provide oversight to my care plan.

We’re not trying to alarm you but arm you with the best information, with an 87% increase in mutant non smoking lung cancers it’s the patients who can be more more on top of the innovation. The science is moving so fast oncologists can not keep up which is great news for us. 
 
Your wife will be well again soon. 

Keep us posted! 
Michelle

 

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I pray you respond well to this treatment.  I was also Stage 3B .  The tumor shrunk with 2 chemos and radiation..  I was able to have a lobectomy .  

Then as was planned I had more chemo after I finished treatlment in the spring of 1998 and have been cancer free since then.

Keep us posted.

Donna G

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7 hours ago, Donna G said:


I pray you respond well to this treatment.  I was also Stage 3B .  The tumor shrunk with 2 chemos and radiation..  I was able to have a lobectomy .  

Then as was planned I had more chemo after I finished treatlment in the spring of 1998 and have been cancer free since then.

Keep us posted.

Donna G

Thanks Donna, I am so glad to see you responded so well to your course of treatment. It gives us hope that others have gone down this journey with good results.

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