bjacksontex

Eric, 7 years! That's so great. May you have a great time celebrating. You deserve this!

I'm so happy for you Sherie. Good to hear from you. Last Wednesday was my one year cancer surgery anniversary. Also got my CT scan. Haven't gotten the results. Hopefully today & hopefully still clear.
Wow! You didn't lose your hair? That's awesome. Please stay in touch. There is a Walk on Nov. 12th I think that's here in Arlington for lung cancer fund raiser. I'm going. Hope you can too!
Barb

I knew I was high risk. Insurance pays 100% of a low dose CT SCAN to find any lung cancer. We all must be proactive. I mean that! I made an appt with my Primary care doc. As soon as she walked in the room, I told her to write the order. I had a "feeling."
A month later they were cutting out, via the Da Vinci, my stage 1a right lower lobe cancer. I don't believe, nor did my surgeon, in a wedge resection. Get it out of me!!!

Now been over a year with clean scans. I'm told I'm cured. My node was 1.5 cm. They took the right lower lobe.

Michelle, please feel free to call me. I had a right lower lobectomy. It was by the robotic Da Vinci. I have been blessed all the way around. A year later & now my 2nd clean scan. But my phone number is 817-874-9033.
I would love to talk with you. We are all different.
I'm Barb in Arlington, Tx.

Hello I am new to this site. Last year I was told I had lung cancer with a pet scan and catscan.when it was time to talk to surgeon he said it was not cancer it was inflammation we will watch it. I left bewildered but happy.  Each last 2 scans showed no change so I walked around sured that I had no cancer. I just had my third scan and I got the horrible call that it got bigger.the surgeon will call to see you. My world has turned upside down. The first time I told people and they kind of avoided me plus i lost a job. Now I just started a new jib can't say anything and don't want to tell anybody either.I feel all alone on this journey. My anxiety is so high and my depression feels hopeless scared sad .I don't know what kind of questions I should have for doctors or what to expect. Nscl stage one. With slight emphemsena (sp?) That's why I came on this site

I knew I was high risk. Insurance pays 100% of a low dose CT SCAN to find any lung cancer. We all must be proactive. I mean that! I made an appt with my Primary care doc. As soon as she walked in the room, I told her to write the order. I had a "feeling."
A month later they were cutting out, via the Da Vinci, my stage 1a right lower lobe cancer. I don't believe, nor did my surgeon, in a wedge resection. Get it out of me!!!

Now been over a year with clean scans. I'm told I'm cured. My node was 1.5 cm. They took the right lower lobe.

If you scroll all the way to the top, it's on the right side of the page!

To answer your burning question-- my tumor was in the upper right corner of my right upper lobe.  That is where the radiation was given. 
It was not aimed at my heart at all.  That lobe of lung was removed and no other lobe of lung was damaged.  I have never been diagnosed
with fibrosis or COPD .    For me it is nearly 19 years ago since I was  diagnosed !!!!!  
Best wishes for you, Donna G

Hi, all ... and particularly, Barb! I'm still here and doing great. Hope you are, too. So sorry it's taken me so long to get back to everyone but time definitely slips away before/during/after treatment. Not to mention the rest of LIFE that's happening at the same time!!!
So ... concurrent chemoradiation went incredibly well. Had Carboplatin and Alimta w/IMRT radiation. My last chemo infusion was December 2, 2015 and final radiation was November 6, 2015. Remarkably, I had almost no side effects from either. I did not lose my hair but experienced "thinning" ... though no one except me noticed it. Polite? I think so!  I saw a dermatologist who recommended a multivitamin and 5000 mcg of Biotin daily plus switching to Head & Shoulders shampoo!? I'm holding steady and have never had to wear the wig I went out and bought when my cancer team GUARANTEED that I'd be losing my hair 2 weeks after the first chemo infusion. So much for that. The other side effect I experienced was tingling/numbness in my feet (mainly toes) and fingers (peripheral neuropathy). It started 3 days after first chemo and I still have it ... mainly in my feet. The good news is that it's just numbness and no pain. I can definitely live with that!
Have had 2 CT/PET scans since treatment ended. The first showed definite improvement and the second showed even more. The best part of the second scan was the Radiologist's comment: "Excellent response to treatment." I haven't had any additional treatment and my next scans are scheduled for mid-November. Fingers crossed!!!
Hope this positive news helps anyone who has recently been diagnosed or who is going through treatment right now. Again, I was diagnosed with inoperable NSCLC Stage 3A and I'm still alive and kicking. I thought doctors were making up the "positive attitude" angle but trust me ... they weren't. Take each day as it comes ... the medical advancements in treating lung cancer are huge!!
- Sherie

Hi Bart,
           Like you I was dxd as Stage 2 lung cancer (NSCLC),that was in Oct 2008.My treatment plan was for what is called Neo Adjuvant Chemotherapy 4 cycles after two I was given a CT to discover the effect on my tumour which was in the airway of my upper right lung.Well,my feedback from my oncologist was that he had never seen such shrinkage in a tumour before after only two cycles,which meant I was a prime candidate for surgery which would follow in January 2009.I did have the further two cycles of chemo at my surgeons insistance.My chemo was a cocktail of Cistplatin and Vinorebine.Prior to my receiving the chemo Iworried about its possible side effects,nausea,hair falling out etc,I need'nt have worried I sailed through the lot without any discomfort at all,oh,except a wee bout of constipation,which i could have avoide if I heeded my docs warnings about drinking plenty of fluids during chemo administration.Surgery followed in January,well I am a Scot,but certainly not a Braveheart,I did worry that the surgery would be extremely painful,leave me a breathless invalid,it might not work and my cancer would return soon after.Well again nothing close to my fears became a reality,I sailed through the surgery,with little discomfort,breatthless invalid? no way,OK I will never be able to climb Mt Everest,but I can get around fine.Climbing hills and stairs,I just have to take it easy.I had 6 monthly check ups for 5 years,my last one a couple of years ago my Doc tells me all my tests have come back clear.He then adds,you know Eric,we do have success with lung cancer and are certainly one,I would go as far to say with confidence,you are Cured,no go away,I dont expect to see you again,we shook hands and parted friends.
     I and now just short of 8 years a survivor,I wish you every success  Bart that I have experienced.

All of my scans in recent years have been without contrast-try not to worry too much about it-with scans to compare, I think that those reading them are better able to see new issues.
 
good luck to you,
 
Cindy
 
 

It was so great to meet you in person! I only wish we would have all taken a photo together! Hopefully we will see you at the National HOPE Summit in DC! 
 
Best,
Cindy

Barb,
 
I've had many with and without contrast.  I don't think it is unusual.  Contrasts helps in soft tissue examination but this CT will be a scan "A" compared to scan "B" and I'm not sure contrast is that helpful in those circumstances.
 
Good questions to ask however.
 
Stay the course.
 
Tom

I had a right lower lobectomy about 4 months ago. Get into your surgeon immediately. That's not normal. Is it hot to touch? I'm no doctor, but you really need to contact his office
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Antony,
 
Donna survived; so did I.
 
Knowledge is power.  Here is a resource that will acquaint you with your wife's disease: http://www.lungevity.org/about-lung-cancer/lung-cancer-101
 
One suggestion at this stage.  Treating cancer with chemo requires a lot of IV insertions.  My veins rebelled.  Ask your wife's oncologist about arranging to have a port installed.  That will make chemo so much easier.
 
Beware of hydrocodone's effect on slowing the digestive process.  Ask your doctor if it is OK to start a laxative treatment.  Depending on the chemo formulation administered, you may need to change the laxative formulation.  Again, this is a point for discussion at a consultation.  The planned radiation treatment should reduce her pain.
 
Scheduling will soon become a management challenge.  Get organized now.  If you have a smartphone, start using the calendar function to set appointments and use the alert function to give you reminders of those appointments.  Use the calendar also to track the onset of side-effects.  If you don't have smartphones, use a monthly printed calendar in a 3 right binder.  Also, the smartphone notes capability is a very good place to record all your wife's medications (name, strength, dose).  Everyone will ask you for this information and I just open my note and hand it to the nurse.
 
Another challenge will be the avalanche of bills and statements.  Start a spreadsheet and organize it with "date of treatment", provider, procedure code, and copay made.  Ask the nurse or doctor the procedure code used for the treatment or consultation.  As statements come in, you'll be able to match them to your record and annotate the invoice number to your spreadsheet with the statement total.  When you get the insurance settlement invoice, add that information to the spreadsheet and record your cost share.  You can really help by getting ahead of this game.
 
You'll have lots of questions.  Ask away.
 
Many here have been exactly where you are.  Many also have been where your wife is.  We are still here.
 
Stay the course.
 
Tom

Hi Ari. Can you give us more details? Are the complications from the surgery or from follow-on treatment? What stage is he? I'm glad you're here. Lots of good folks here who like to help where possible.
Barb

Meloni,
 
OK - you are typed, staged and locked and loaded for treatment.  You've already received some great medical advice - a port installation will make vein access a non problem!
 
For me, radiation was the inverse of March:  it came in like a lamb and left like a lion.  The first 2 1/2 weeks were a snap.  Then skin on my chest started getting red and painful and my throat became dry producing a non-productive, near constant hack.  Stock up on Solarcaine, Halls lemon drops, Chloraseptic, and don't hesitate to ask your radiation oncologist for the "magic mouthwash" elixir they often provide.
 
If your chemo is concurrent with radiation, it may be adjunct therapy.  It will likely be administered once per week and it will be a reduced strength.  Radiation is the killing agent; chemo cleans up the blood stream and attacks cells dislodged during radiation.  So, you may not suffer chemo related side effects at all.  I had taxol carboplatin as my adjunct, once weekly, treatment and had just a twinge of unsettled stomach about 3 days after infusion.  I didn't even lose my hair!
 
Use your smartphone calendar to track the onset of problems.  Also, some smartphones have notes apps that are really convenient for posting a "how I'm feeling today" daily journal.  You can use that journal when you have consultations with the radio oncologist or medical oncologist to discuss the onset and severity of side effects.  Timing is important because once you know how the chemo drugs are affecting you, the effect will be repetitive and taking mitigating medication just before onset of the problem is really helpful. Also use the note function to record all the medications and prescriptions (type, strength, dose) you are taking.  Even now, at my doctor visits, I just open up the note app and hand it to the nurse.  Your prescription status will become complicated. 
 
Now that you are in treatment, you'll need to have a "cancer calendar" (paper or digital) and a "cancer notebook" (paper or digital).  I use my smartphone for both but in the early days, I walked around with a paper calendar and notebook in a 3 right binder.  Your calendar will quickly become complicated so schedule management is essential.
 
Be prepared to be "knocked off your feet" the last several weeks of radiation.  I was so weak, I could hardly make it from the car to the clinic.  That was radiation's lion's roar for me.  I needed someone to drive me everywhere during the last 3 weeks of radiation and was pretty much confined to bed from an absolute lack of energy.
 
Eat a lot.  My appetite disappeared during the last 3 or so weeks of radiation and food I enjoyed developed unappetizing taste.  Tart foods like dill pickles, cranberry juice, grapefruit, key lime pie, and lemon-lime gummy bears became my late stage radiation diet.  This is the wrong time to go on a diet because you'll likely lose weight and your body will need energy in the form of calories to replace cells disturbed by treatment.  
 
Stay the course.
 
Tom 

Thank you Mary, Barb, and all!
 
My husband and I met with the oncologist on Friday, as planned. In a nutshell, the brain MRI came back clean (nuttin' going on upstairs, <snicker>). The cancer has been staged as IIIA. Doc says treatment will be with the goal of remission and cure, and we are going to start with chemo and rad therapy, done concurrently. Tomorrow I meet with the rad doctor for the consult (6 weeks of therapy, but she'll give me the rundown); Tues my chemo port will be installed, and Friday I meet with the ARNP for an education in chemo. Treatment for both will start the week after (March 7).

Thanks Katie B, CindyA, Nicole for a great Summit. It was my first and I met a lot of great folks! Tom Galli, it was also a pleasure to meet you and hear your survivor story. To anyone who gets a chance for either the regional or national Summit, go! It was a full day with excellent speakers. Food was really good too!
Barb
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Rhonda, I had a bunch of people praying for me. In fact, it was kinda a miracle it was found so early stage. I'll be praying for you tomorrow. Careful. Don't text on heavy duty pain pills. I did and I'm still blushing from embarrassment.
Hugs, Barb Jackson

Thank you Barb and Tom!
 
My MRI was on Tuesday. Like the CAT scan, PET scan, and bronchoscopy, it was my first of that type of procedure. Very noisy, and I felt like Hannibal Lector when the placed the hood device over my head and face.
 
My next appointment with the oncologist is tomorrow, and it's been a test of patience, wondering what's going on in my body, and how my life will be changing.
 
Tom, you have mentioned genetics in some of your posts. Do you have some keywords that might help narrow my research regarding that? The doctors have asked about my family history, and it was tough to immediately answer because the father who raised me, passed from lung cancer at 48, but he was not my biological father. All of my siblings (1/2 siblings, genetically speaking), are cancer-free, but I am also the oldest. My biological father, whom I have only recently reconnected with, has disclosed that he has COPD (industrial exposure), his father passed from lung cancer, his paternal grandfather passed from a type of cancer, and my father's sister passed from lung cancer last year. I have no idea if that's relevant, but thought I could add it to the info if it would be helpful. 
 
Thank you for your help, and also about the notebook Barb!

Hi Barb,
Yes, this being Thu I just don't think I will make the summit Sat will be 11 days post op and although I am recovering, it is slow going. I am still just working on my building up my walking inside for now, trying to get more stamina for a real walk outside. Don't think I'm even ready for a walk around the W...... store yet. I'm disappointed I won't make the summit this year, I do want to say I am so thankful I found this site and for all your support and encouragement. It was all of you that saw me through my fears, calmed me when I needed it and answered all my way too many questions.
I know my journey with LC is not over and will always be in the background of my future but just knowing that I now have what I consider to be my extended family with my Lungevity friends will make the journey so much easier.
Have a wonderful time at the summit and consider yourself hugged Barb since I won't be there to give you one in person.
Blessings,
Rhonda

One other thing....always take your 3 ring binder with all your appointments and pages for questions...and map of facility. And blank pages to journal. To cuss & scream!
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You know my old remedy fro when your missing someone really bad and want to talk???? LOL... take a drink or something you can enjoy outside or if it is too cold and go near a window... open the blinds if your indoors and look up and have a long talk with the one your missing ..... and not too yourself if you don't want to....have a long talk and say everything on your mind.. this is lots more fun when it is warm outdoors and relaxing but it helps if you can not get outside... in time you will get a sign or a response from then...then every time you se or smell or hear that sign your knowing they are there answering you...

One other thing....always take your 3 ring binder with all your appointments and pages for questions...and map of facility. And blank pages to journal. To cuss & scream!
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