New to the foum

[St Michael]

Hello everyone. I am brand new to the forum and this is my first post.

About four to five weeks ago my mother, age 62, was diagnosed with Stage 3a Adeno-squamous carcinoma - NSCLC. She has never smoked, but was occasionally around second hand smoke during her life. She is currently being seen at the Dana Farber Cancer Institute - Women and Brigham's Hospital in Boston, MA. Her tumor is approx. 3 cm x 3.5 cm in her left, upper lung area. Two lymph nodes (upon mediastinascopy) were shown to be infected at this point. PET scan shows no current metastasis (very thankful) to other organs. The Thoracic surgeon (Dr. Colson) and Oncologist (Dr. Jacobson) have said that her tumor is currently too close to a main vein near her heart for surgery. They have prescribed her a chemotherapy doublet consisting of Cisplatin and Pemetrexed, which she starts tomorrow, in attempt to reduce the tumor and pull it away from the vein to make resection possible. Radiation was not recommended as part of her neoadjuvant therapy at this point because the doctors feel that it may "melt" the tumor onto the vein of concern.

I was looking to see if any of you here have experiences with these two doctors or Dana Farber, this type of lung cancer or this chemotherapy doublet - specifically if it is successful in shrinking tumors. I am trying to be optimistic, but realistic about the situation. I have read that resection is the best chance at long term survival. Any feedback would be greatly appreciated.Thank you all and god bless.

 

[Susan Cornett]

Good morning.  I'm sorry that your mother is going through this (and you as well) but glad you found this site.  It has been a lifeline for me and where I find the most hope.  I had a mass in my upper left lung and had a lobectomy in February of this year.  At that time, I was diagnosed as Stage IIIa adenocarcinoma.  Within four weeks of surgery, I started the cisplatin/pemetrexed chemo and had four rounds of it.  The chemo affects everyone differently but my side effects were manageable.  I had nausea, neuropathy and fatigue.  I also developed ringing in the ears and I find that to be the most troubling effect that just won't go away.  I did not lose my hair (a frequent concern of cancer patients).  I will you keep you all in my prayers as your mom starts down this path.  Keep us posted on her progress.

 

[St Michael]

Thank you for your response and I hope you are recovering well. Do you have another CT or PET scan scheduled in the near future? Hopefully you are NED.

This is all certainly overwhelming at first. I am hoping that this doublet reduces her tumor enough for surgery. From what I read, her tumor is rare and is listed to be aggressive. Some of the studies on Neo vs. aduvant chemo are confusing and I am not sure which gives better survival odds. I am glad that she is beginning her treatment and her fight.

God bless.

[Susan Cornett]

Good morning.  Yes, I am currently NED!  I had a scan at the end of August and will do another scan in November.  For better or worse, I had the surgery first and that is how I was diagnosed.  My cancer had spread to 7 of 10 lymph nodes but the surgeon was able to get clear margins.  We subsequently found that it had spread to my thyroid (prior to chemo) which is incredibly rare.  I think my fabulous oncologist doesn't know what to think because I'm skewing stats and my cancer isn't following the "norm".  I'm fortunate to have a great oncologist who has also done research on lung cancer.  Don't even get him started on the "pretty cancers" that get all of the attention and a disproportionate amount of funding.  Just know that we are all here to be a sounding board, share experiences or otherwise assist you.  Had I not read Tom Galli's story and his book, I wouldn't have the outlook I have today.  Keep the faith.

[Tom Galli]

Thank you Susan.  I am humbled.

St. Michael,

I've responded to you on another part of our forum but I want to highlight a very important point Susan raises - the faith she has in her oncologist.  Cancer treatment for most is an EBGO (everybody gets one) affair in that most of us get what is termed a standard of care.  Present with Stage X, Type Y lung cancer and you get Drug A and B.  But, as standard of care treatment fails to arrest or, more importantly, if there is a recurrence, the EBGO approach is no longer as important a factor.  The art of oncology - what to do next - starts to become more important than the how of oncology - the science of oncology.  So the intuition of the oncologist, my view, becomes very important criteria.

I can tell you my oncologist has a high degree of medical intuition and so does Susan's.  I wouldn't know if your mother's oncologist has that characteristic.  But, here are some clues to watch for to discern the intuitive nature of your mother's oncologist.

• Does the oncologist openly discuss a range of possible treatments and outcomes during the consultation?
• Does the oncologist invite discussion of the aforementioned?
• Is the oncologist forward thinking?  By that I mean he might say "this is working now but if it stops working, we could try this".  Or, "the chemo is having an effect but we might add this drug...."

Writing about intuitive clues is hard but I can give you an analogy that might help you understand my point.  There are two kinds of weather forecasters on TV.  Those that may have some meteorology training but who are mostly broadcasters.  Then there are those who have a PhD in meteorology.  Their explanation of the same storm forecast is vastly different. The broadcaster tells you the facts; the PhD explains the storm, its causes, its effects, and the uncertainty about future-storm behavior.  You get the feeling the PhD meteorologist is inside the storm.  You want that same feeling after your oncology consultation.

Stay the course.

Tom

[St Michael]

Thank you both for your support and insight.

I just spoke with my mother after she received her first chemo treatment in Boston. Its obviously very early, but so far she is only reporting some dry-mouth for side effects. For us, Dana Farber seems to be the most highly recognized and dedicated cancer facility in the Northeast area where we live, so we are placing our trust in them. I am impressed with their reputation and their multi-team approach to her situation. My mother seems very confident with them. I do get nervous because I know even at some of the most cutting edge facilities, modern medicine can only go so far for some.

SKMCORNETT - Congratulations! I hope my mother can follow in your path after her induction chemo. It was quite alarming to learn during my research that lung cancer is one of the most serious/deadly cancers, however funding tends to go to other cancer research. Perhaps its the misperception that only smokers get lung cancer and are responsible for their situations?

TOM - Her Oncologist was very positive and confident that her chemo doublet will reduce her tumor and allow resection in the next month. This was important to hear because I heard surgery is best for long term survival probability. If he is correct about this, he will have earned multiple points from me. The oncologist did discuss the 50% possibility of recurrence. He suggested that chemo and surgery should be a first line treatment followed by second line treatments of radiation and targeted therapies ect. Hopefully, if a recurrence does occur, it will be a few years down the line where some of these targeted therapies/immunotherapies are perfected.

She is having her tumor genetically profiled for mutations in preparation for future treatments. I hope she won't need them.

I wish you both a safe weekend.

God bless.

 

[St Michael]

Hello everyone.

I hope you are all well and happily preparing for Halloween.

Just a short update, my mother met with the oncologist to receive her second round of chemo last Friday. They will give her a CT scan in about 3 weeks to see if the chemo is effective in shrinking her tumor at all (fingers crossed). They did mention that her lung tumor has the EFGR mutation. The oncologist mentioned to her that the EFGR mutation is unique to her tumor and that she may be a candidate for immunotherapies (Opdivo) further down the line. The oncologist mentioned to her that the EFGR mutation is found only in her lung tumor and is not naturally forming elsewhere in her body/bloodstream. I was not with her during this meeting/treatment and was confused by that statement.

Can anyone offer an explanation about the EFGR mutation being unique to her tumor and not her body and what this means? Would this typically make an immunotherapy more effective (some of my research seems to show that it would be). Thank you all for your insight.

Have a good night. God Bless.

[Tom Galli]

St. Michael,

I can't begin to offer an explanation about EGFR mutation being unique to only the tumor and not other places in the body.  Does your mother's practice have a patient portal?  If so, you might generate an email question on this issue and submit it to her doctor through the practice portal.

Stay the course.

Tom

[Mally]

Ive read some posts where people say Unfortunately i dont have any mutations .....what is a mutation and why is it good to have that ?

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[Tom Galli]

Mally,

What is a mutation?  Good question and this is a good summary of tumor mutations and newly emerged targeted therapies.  

There are three subtypes of non small cell lung cancer: Adenocarcinoma, Squamous Cell and Large Cell.  Here is a good summary of the three types.

Research has discovered that some flavors of Adenocarcinoma display genetic mutations.  Some of these mutations can be targeted with specialized treatments often called inhibitors.  A summary description of inhibitors is here but this research is revealing new genetic mutations and avenues of attack rapidly.

My lung cancer was Squamous cell and this form does not display the tumor mutations present in Adenocarcinoma.  But, there is a new treatment means called immunotherapy that is shown to be effective against some squamous cell presentations.  Here is some summary information on immunotherapy.  All this gets pretty complicated.

Were you told the type of non small cell lung cancer you were diagnosed with?

Stay the course.

Tom

[Mally]

Mine is adenocarcinoma tom

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[Mally]

Sorry just realized i had already asked about mutations and that you gave an answer

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[Mally]

Well my letter said negative to mutations so thats not in my favour as i hoped

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