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Laurel

NSCLC IB to IIIa after surgery

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My journey started August 29, 2017 with Hurricane Harvey. We stayed through the hurricane and for five more days before relocating for 8 days to a nearby town. There was debris and mold in the air, the stress of returning to our home through the debris every day or so to check on our home.  Early October, 2017, xrays found walking pneumonia and something in my right upper lobe to be checked further.  Through so much testing, some didn't go well, and a referral to an oncologist, I was told on December 18, 2017 that I had a 2.5 cm tumor, Stage IB....wasn't I lucky to have caught it so early. My oncologist referred me to M D Anderson in Houston, Texas, for surgery. On January 31, I met my surgeon, Dr. David Rice, and scheduled for VATS (Video Assisted Thoracic Surgery).  On March 16, 2017, I had surgery removing my upper right lobe and 13 lymph nodes. The tumor was 3.5 cm, 4 lymph nodes had cancer (2 down my wind pipe, 2 behind breast bone). It was T2, N2, Stage IIIA. Stage IIIA?!!!!  I was in shock. I am 3 weeks past surgery and doing well. Actually, this feels like a respite of healing before being hit with a further treatment plan. This whole journey has been a roller coaster of good news/ bad news. My next appointment at M D Anderson is March 21 when I meet my new oncologist, Dr. Mehmet Altan, get xrays, talk with my surgeon, Dr. Rice, and meet with a nutritionist (my request). I have no idea what will be recommended. I will seek a second opinion from my local oncologist but lean heavily on M D Anderson's recommendations. I have an incredible support system of family and friends who lift me up.

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Laurel,

Welcome here, unfortunately....

Your post did not report a type of lung cancer diagnosed.  I'm sure there was a biopsy performed after surgery.  Knowing your diagnosed type, non-small cell (adenocarcinoma, Squamous cell or large cell) or small cell, would help me prepare you for your March 21st consultation with your oncologist.  So, let me know your type if you are comfortable about revealing it.

MD Anderson is a great cancer center with a world class cancer researchers. So it is a great place to obtain diagnostics and treatment.  However, your surgery is your first line treatment and what may lie ahead is a course of standard chemotherapy or perhaps immunotherapy or targeted therapy, depending on your type of lung cancer.  I'm also a Texan and know many who've received treatment at MD Anderson.  It is a great place for those with unique and unusual treatments, but if your treatment is normal post surgical chemotherapy, a routine treatment after curative surgery, then you may find a local, community based treatment center is a better place to receive these infusions.  MD Anderson is a big place, but I found a small clinical setting where everyone knew me and knew how to find a vein was a plus in my treatment.

Stay the course.

Tom

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Hi, Laurel.  I hope you are not still dealing with the hurricane aftermath.  I have friends in Kingwood and Friendswood who are still putting everything back together.

I'm glad that you are able to access the wonderful care at MD Anderson.  My dad gets some of his treatment there.  I feel about staging like I do about statistics - neither carries much weight with me.  I'm stage IV adenocarcinoma and just hit my two year mark from diagnosis.  I, too, had affected lymph nodes (7/10).  Those little suckers are not our friends when it comes to cancer cells!  But if there is one good thing about having lung cancer today, it's that we have so many more treatment options today than were available 3, 5 or 10 years ago.  

Let us know how we can help you.

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Tom- My diagnosis is non small cell andenocarcinoma Stage IIIA (T2N2).The tumor was found in my upper right lobe, which has been surgically removed. 4 of 13 lymph nodes removed had cancer- 2 down wind pipe, 2 behind breast bone. 

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Tom, 

As far as where I will receive treatment, my oncologist, who used to work at M D Anderson, said- surgery at M D Anderson, chemo and radiation in Corpus Christi. My husband and are prepared to rent an apartment in Houston for specialized treatment. Otherwise, I rather be home in Rockport and drive the 40 minutes to Corpus for treatment. I can better keep my connections with friends and, at times, feel well enough to play mahjongg or line dance. 

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Hi Susan,

Fortunately, we had just a little damage to our condo. Whereas, those around us are still fighting insurance and repairs...or complete rebuilding to get back home. Our sweet coastal town of Rockport continues to slowly rebuild.

You give me hope and direction- not to rely on staging. There are treatments that can help. Thank you so much.

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tWelcome, Laurel. 

Tom and Susan have given you some great info. Both of them are big sources of inspiration for not only surviving late stage lung cancer but living well and supporting others with the diagnosis. The only thing I have to add is to ask whether you have had biomarker testing of your tumor (AKA molecular testing or tumor genetics). This is important in determining what kid of treatment will be most effective.

Bridget O

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Laurel,

OK - adenocarcinoma.  So, the first question I'd ask the medical oncologist is to ensure the biopsy is tested for biomarkers.  Hopefully, you'll never need to understand biomarkers but they indicate suitability for new targeted therapy that only attacks adenocarcinoma tumors.

The next question is if the doctor believes your next treatment should be adjuvant chemotherapy.  Sometimes we lung cancer patients call this "dust-up chemo."  Its purpose is to kill stray cancer cells after surgery that may be floating around in the blood or lymphatic systems.  For most, this is a less concentrated type of chemotherapy and there a number of drugs that successfully counter adenocarcinoma.  But, you'll likely get a pairing of two drugs, called combination chemotherapy, administered in four infusion sessions.  Some I know who've had adjuvant treatment didn't even lose their hair.

But, with 4 of 13 tested lymph nodes reflecting disease, there is a chance your oncologist would want you to receive a full strength chemo paring for six to eight infusion sessions.  I can't tell you which of these two post surgical chemo routines is best.  That is a question you should pose to your medical oncologist.

Wow -- Rockport -- the hurricane was scary. I can recall seeing the devastation on TV and you are indeed lucky with minimal damage.  As far as where to have the post surgical chemo, I'd do it as close to home as possible.  I wouldn't go to the trouble or expense of securing lodging at MD Anderson because the post surgical chemo at MD Anderson won't be any different than that administered at Corpus.  I hope this helps.  More questions?  Fire away.

Stay the course.

Tom

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Hi Susan,

Fortunately, we had just a little damage to our condo. Whereas, those around us are still fighting insurance and repairs...or complete rebuilding to get back home. Our sweet coastal town of Rockport continues to slowly rebuild.

You give me hope and direction- not to rely on staging. There are treatments that can help. Thank you so much.

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BridgetO and Tom,

My sister would be thrilled you mentioned biomarkers. She had breast cancer in the late 1990s. Then, she worked with a volunteer cancer advocate group in the San Francisco area in California. She became affiliated with Stanford University and their cancer program. When she heard I had lung cancer, she began educating me on biomarkers and targeted treatment. She also encouraged me to add a meeting with a nutritionist for my March 21 meetings.....which I did.

Thank you both.

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Tom,

Thank you. I have added your questions to my questions for the oncologist at M D Anderson. I was pretty sure the next step would be chemo. The extent of the chemo will depend on how much cancer and where it may still be. Yes, my local oncologist agrees that chemotherapy can be done locally.

I have a question about radiation....which I would guess would follow chemo...although they could combine chemo and radiation. M D Anderson has Proton therapy which is said to target cancer only and not go through the body. Should having radiation at M D Anderson decide toward staying in Houston for treatment?

Thank you Tom.

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Tom,

I was doing fine managing pain. I am taking 2 extra strength tylenol every six hours and I am down to 1 gabapentin at night which I was stopping today. Then, I got a pain in upper right back and on my right side. Warm shower, tylenol and pain cream didn't relieve it. I broke down and took my first tramadol. I have asthma and did not trust tramadol, but it relieved my pain. I don't know where this pain came from. It surprised me.

I would like to get to taking extea strength tylenol and pain cream as needed. This is a backwards step. It has been 3 weeks since my VATS. Is using a heating pad now  ok? At the hospital, I was told warm not hot showers as my incisions were glued not stitched.

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Laurel,

To your two questions, radiation and pain, here is what I suggest.

Radiation comes in many flavors.  For simplicity, I'll cite two groupings:  conventional and precision, although the conventional these days is pretty precise.  Here is more complete information (select the text - What are the different types of external beam radiation therapies (EBRT).

Conventional radiation with chemotherapy is normally given as a first line standard of care when surgery is not possible.  The conventional radiation (standard EBRT or 3D conformal radiation therapy) is given fractionally, in a number of small doses.  Generally, one treatment per day for 30 days is the cycle time.  So, if your doctor feels conventional radiation is appropriate, then you could have it at a local clinic paired with your chemotherapy.  However, normally one does not have conventional radiation after curative surgery.  So the suggestion of conventional radiation, if it were me, would prompt a whole lot of questions about the location of non-resected cancer.

Precision radiation (IMRT, IGRT, SBRT and Proton) is or can be thought of as a substitute for surgery.  The dose is very precise and powerful and it is generally aimed at a a small target (one or several lymph nodes or one or several tumors).  Precision radiation technologies are generally found at sophisticated cancer hospitals or specialized clinics. A typical timeframe for precision radiation is three consecutive days but if your doctor is considering precision radiation, a target needs to be identified and it sounds like the surgeon eliminated the targets.

I'm using a lot of normally, generally and usually qualifiers because thankfully lung cancer treatment is suddenly much more complicated.  Both the medical and radio oncologist have many more tools to apply then when I was diagnosed.  Moreover, everyone is different and everyone's cancer is different so don't consider anything I've said as gospel (OBTW - I'm not a doctor so always value your doctor's opinion over mine).  

My surgery (actually three) was a nightmare and surgeries coupled with 18 infusions of Taxol and Carboplatin have left me with several troubling chronic pain conditions.  My pain however is neuropathic caused by extensive nerve damage and OTC pain remedies do not help.  But I am very wary of opioid pain medication.  Sometimes I need it but I always wait till I go to bed for the pain is most troubling when I try and sleep.  However, I've had great success with lidocaine transdermal pain patches.  They last much longer than topical cream and work particularly well on my incision sites.  I wrote an essay about my pain management that might be helpful.

I'm not sure at the timeframe for suture healing as concerns heating pads or hot showers.  I wouldn't think a heating pad could generate enough heat to disturb "super glued" sutures.  I don't think a hot shower would either but again, I'm not a medical professional.  Are you sleeping elevated at night?  I spent many nights in a recliner before we purchased an electric adjustable bed (heaven) and a high density foam mattress (heaven squared)! Perhaps elevating your incisions when you sleep could control the pain you are experiencing.  

Stay the course.

Tom

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Tom,

Thank you for all the information about radiation treatment and especially the warning about radiation recommended and what they believe is still present in my body.

I read your writings on pain management.  Good grief!  How do you handle all you've gone through and continue to experience? I know I am a "pain wimp", but will look for alternatives to taking Tramadol. It's time to break out the heating pad.

As long as I am on prescribed pain meds, I can not drive, and I am ready for the independence.

I have slept upright since my surgery. I have a big reading pillow, pile up two pillows and if my back is aching, I add a comforter with almost sheep pile quality.

Bless you for providing information, hope, and support.

Hugs,

Laurel

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That is very similar to my story that i was curable with lobectomy but after the surgery they tested some 13 lymphnodes and 7 had cancer in them and sas staged 3A so chemo followed and after 6 months i was all clear but next 6 months lymphnodes were enlarged 2 in chest and 1 i neck and biopsied to show cancer so now im having opdivo immunotherepy treatment every 2 weeks and got fingers and toes crossed that it works and i wish you all the best with your treatment 

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Hi Laurel,

I wonder if your sleeping position  is contributing to  your pain. After my surgery I tried to achieve the recommended 45 degree reclining position by using what you're probably calling a reading pilliow, together with other pillows. I ended up with a stiff and sore neck. Then I got a foam wedge (12 inch high wedge = 45 degrees) and no more sore neck. Just a thought.

Bridget O

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Thankyou Laurel and i hear some people are having wonderful success with opdivo and im hoping im one of them 

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Crummy day....diarhea...nausea...chills....no fever. If I feel bad tomorrow, Monday, I'll arrange to see my primary doctor.

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BridgetO.

I took one tramadol on Friday. It masked the pain.  It is possible it was tramadol although it was 2 days before flu like symptoms. I am not taking it again.

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