My Lung Cancer Timeline

12/23/2011 - my nurse practitioner calls to inform me my chest x-ray following annual physical revealed a 9 mm vague nodular density in left upper lobe

12/28/2011 - CT scan further identifies the ‘nodular density’ as posterolaterally and an 8mm spiculated nodule

01/09/2012 - PET scan confirmes 8 mm spiculated nodule as “suspicious” with SUV < 2 plus reveals a right-sided subcarinal adenopathy of 13 mm and SUV >4

***** everything prior to CT guided needle biopsy I concealed from everyone

02/06/2012 – outpatient procedure: CT guided needle biopsy of spiculated nodule 
   … hospitalized the following day with pneumothorax (less than 10% chance)

02/09/2012 – notified specimen well differentiated adenocarcinoma, CK7 and TTF positive CK20 negative, diagnosis malignant favor lung primary

03/01/2012 – outpatient procedure:  EBUS (Endobronchial Ultrasound) biopsy of right side subcarinal adenopathy. 
     ... procedure aborted as I flatlined for 20 seconds (less than 3% chance). Admitted overnight for total cardiac work up - heart was fine. No explanation found. Vasovagal response suspected.
    
03/14/2012 – VATS with left upper lobe wedge resection, mini-thoracotomy with mediastinal lymph node dissection. No surgical complications. Discharged after 3 days in hospital. 
     ... lung tissue surrounding tumor and lymph nodes removed tested negative for carcinoma. 
     ... No chemo nor radiation suggested.

***** everything between CT guided needle biopsy and successful surgery was concealed from everyone except our adult daughter

03/17/2012 – third morning following surgery released home to recover from surgery for 6 weeks

04/20/2012 – post surgery follow up x-ray & appointment ... healing progressing fine

07/18/2012 – four (4) month follow up CT scan & appointment - NED (No Evidence of Disease) / NEAD (No Evidence of Active Disease)

11/08/2012 - four (4) month follow up CT scan & appointment = inconclusive due to respiratory inflammation from chest cold  ... new CT scan schedule in 8 weeks ... it never happened because thoracic surgeon did not pick up phone for peer to peer conversation with insurance company


03/14/2013 - 12 month follow up CT scan = "concerning" but inconclusive due to “air space concerning for pneumonia” on a 10 day course of an antibiotic Levofloxacin (Levaquin) to deal with the pneumonia, take a week for lung to ‘chill out’ and then a PET Scan on April 10. 


increasingly frustrated with my chances of outliving lung cancer with 'counrty mouse medicine' I reached out to 'city mouse medicine' 

... 04/08/2013 - shipped duplicates of my lung cancer records to MedStar Franklin Square Lung Cancer: Thoracic Cancer Center in Baltimore, MD for April 22 meeting with  Dr. William Krimsky, Director of their Center for Interventional Pulmonology for a second opinion. 


    04/10/2013 - PET/CT scan = liberally paraphrased 1) 'Bob’ (see naming of lymp nodes) continues to misbehave larger and brighter than PET/SC of 14 months ago, "consistent with metastatic disease”. 2) “minimal pneumonitis since prior PET scan though increased in size since 3/15/2013 CT” 3)  “misc lung junk too small to accurately characterize and long term follow up recommended”

  04/22/2013 consultation with Dr. William Krimsky, Director of Interventional Pulmonology at MedStar Franklin Square Lung Cancer: Thoracic Cancer Center in Baltimore



  04/26/2013 - outpatient procedure:  EBUS (Endobronchial Ultrasound) biopsy of right side subcarinal adenopathy by Dr. Krimsky at MedStar Franklin Square Hospital. Baltimore, MD

 04/29/2013 - "probable Stage 3 or 4" pending further pathology studies including comparison to tumor pathology from 3/14/2012

     
     05/07/2013 - biopsy tissue in route to genetic testing


     05/08/2013 - episode of syncope at counter of Dr. Krimsky's office Franklin Square Medical Center, led to ER visit and CT Scan of Head "suspicious for neoplastic process" followed by Brain MRI "compatible with metastasis" 

 05/13/2013 - met with Stephen Milito, MD Medical Director of Oakwood Cancer Center and radiation oncologist plus his staff including nurses and radiation therapists for treatment planning.

05/13/2013 - first of 10 treatments will begin of external beam radiation therapy 

05/29/2013 10th and final brain radiation treatment for brain metastasis .. frankly feeling great! 


06/11/2013 first chemo since DX scheduled - going in with twin guns of Cisplatin and Altima

... chemo fatigue and chemo fog is kicking my ass - I pray it is doing the same to lung cancer

06/29/2013 blood transfusion

07/15/2013 Brain MRI 

07/16/2013 ... oh happy day!!! Brain MRI shows brain metastasis has been arrested!! - next check up on brain in four months ... I hugged my radiation oncologist half a dozen times :) 

07/25/2013 after 6 weeks of chemotherapy two of the three tumors in right lung have shrunk and one has not grown … oh happy day II!!!

07/29/2013 Chemo Round #3 featuring a switch from (Cisplatin+Alimta) to (Carboplatin+Alimta) … 

08/09/2013 blood transfusion #2

08/29/2013 Chemo Round #4 (Carboplatin+Alimta) 

09/09/ 2013 blood transfusion #3

09/24/2013 Chemo Round #5 (Carboplatin+Alimta) 



8 comments:

  1. Patrick - you have great odds in your favour! I had stage 3a Adenocarcinoma of the lungs in late 2004. The first round of chemo didn't work, so I had a lobectomy (not to be confused with a lobotomy!) in late August of 2005, followed by a bit more chemo in December, followed by 35 rounds of radiation in the early spring of 2006. That was my last treatment - 7 years ago. And so far, so good. My last dreaded visit to the oncologist was in August of 2010.

    Don't let the stats get you down. I saw that over 20% live well past 5 years and thought -"hey! that's pretty good!". Also, a friend gave me a medical book which I poured over and, on my own, decided to take a powder called CF IP-6 & Inositol. Other than weekends, when I don't take it, I've been taking it pretty well every evening before my 'wine time' for 7 years. Not long ago, it was brought to light in medical journals that it indeed has proved highly beneficial for certain kinds of cancer,m lung cancer being one of them. Who knows if that's why I'm still kicking about, but I am convinced that this stuff has really kept me in pretty good shape (I haven't had a cold or flu or anything since 2006!)

    My point is, don't let this get you down. You WILL get through it - just go with the flow and know that there really is a light at the end of the tunnel and it's NOT a train!

    Do your homework on this suggestion - it seems to be working for me and it has kept the elephants away too.

    Sue

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    1. Sue, you must be my angel as I am sitting here drowning in rising scanxiety over my PET/CT tomorrow morning. Thank you for reaching out and your suggestions.

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    2. Let me know how it goes, Patrick. I found it's hard to talk to people who haven't been through this, so if you need a sounding board, talk away.

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  2. Dear Patrick,
    I am at the beginning of a journey with possible lung cancer. I am so confused anxious and just feeling like I am losing my mind. I hope your results come back positive (positive in a good way) and thank you for your blog- if you can do as well as you are doing, I think I can keep my mind intact waiting for my pet scan report...a few more hours, days.
    Thanks for hrlping me out.
    Gayle

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    1. scanxiety is the most maddening I found a song written by a thoracic oncologist who leads a pallative care team by day and band member by night I find the words at least honest if not even soothing I posted about it at http://lung-cancer-survivor.blogspot.com/2012/10/is-scanxiety-universal-emotion.html

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  3. Patrick, although tough to absorb knowing you went through it, I like your timeline. My sister received an Adenocarcinoma III B Wet diagnosis June 6th, 2013, out of "nowhere". She had a pulmonary embolism the same day and was very ill for a while. I am trying to document what happened; so far I have used a narrative but it may be too much for people to follow.
    If you have the inclination, please take a look. Most are about June and I expect to fill in what happened in July and August. I posted something new yesterday. Http://www.livingwithcancerblog.wordpress.com
    You are one tough guy. I am adding you to my prayers. Mary

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  4. Hi Patrick,

    Please see below. This patient is from Florida who amazingly is cancer free today. She is a living miracle with complete recovery from NSCLC. If you are interested please email me at anand.katakam@gmail.com. I can also provide you the contact details of the patient who completely recovered from NSCLC ( was given few months to survive in 2007). You have to trust and do this along with your regular treatment. I can be reached at 6102472408.

    Best
    Anand
    Please see the testimony of Amba -stage 4, 5 times metastated with 12 stents in arteries due to radiation,
    on www.pyptusa.org or click on http://www.pyptusa.org/pagesdir/testimonials.html tiem 4,5. Also read attached.
    If you are interested in doing Pranayam (breathing exercises) to get well please let me know. Thousands of patients with cancer benefited from this.

    4) "I had Bronchial Asthma since 1975, and was hospitalized many times. I had allergies from 1980s when I had to take subcutaneous shots for allergy. I had blood pressure since 1997. In 1999 my asthma was debilitating and I got disability from my work. In 2001 October due to stomach problem I had upper GI done which revealed a stage 3 malignancy in my lower left lung which was removed by surgery in Dec. 2001 but affected one of the lymph nodes. It followed by a chemotherapy but it meta-stated to the bronchial tube, then to the spine, to right pelvis to left pelvis. Except in the left pelvis each time at each place radiation treatment was given followed by chemotherapy. The 40 radiation treatments in bronchial tube created para-cardiac fluid around my heart and shrunk my arteries as a consequence first time I have received 2 stents in 2004. A biopsy of spine indicated that it spread in the bone -a stage 4 cancer. I had breathing problems and was put on chest vest, bi-Pap machine and Nebulizer. Thus I had 3 times radiations and 4 times chemotherapy and had a total of one dozen (12) stents. In February 2007 I was taken off the simulation table for radiating my left pelvis as it would leave no place in my body to generate bone marrow and I would be needing blood transfusion every month.

    At this stage we retreated for eventuality but fortunately came across Swami Ramdevji’s yog and Pranayam program on Aastha television. I started doing Pranayam in March 2007 and within few days gradually increased it to 2 hours in morning and one hour in the evening daily. My blood pressure went away after 3 months, my asthma and all breathing problems went away in 4 months and I got off the chest Vest and bi-Pap machine. My hemoglobin started increasing and I did not need Procrate shots every month. After 6 months, of the two spots of cancer in my left pelvis, one reduced to half. After a year one spot disappeared and the other reduced to half. Finally, after year and half my PET scan showed no spot at all. Since late 2008 I am cancer free and my arteries are opening up, also.

    During 2002-7, I used to take 14 medicines. With Yog and Pranayam, I now take only 3 medicines. Now I am perfectly healthy doing all my personal and household work. I have to tell all cancer patients that even cancer can be cured, one should not be discouraged and while believing in God one should try Pranayam with courage. Doing breathing exercises daily and watching what we eat can cure all disease. I had asthma, cancer, arthritis and many other problems including spots on retina, humming sound in ears, weakness, etc. Yog and Pranayam has given me a new life."

    Amba Nagda - Mims, FL


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  5. How i survived lungs cancer.
    I was diagnosed of lung cancer in 2011 and the doctor (oncologist), because i was a chronic smoker who started smoking from 16 and told me i had just two years to live that my lungs had been damaged, that even on the best medication i still had two years. I needed help because i was scared to die and i did chemotherapy, radiotherapy and it was unable to treat or help me. I coughed nearly every minute. In my death clock counting just 6 months remaining, if you knew me then i was good as dead because the cancer had eaten me up. My wife was fortunate enough to contact doctor Amber, a herbal doctor who came and treated me in our house using his medicine and that is how i was saved (where western medicine and methods failed), that was the greatest decision my wife had taken aside marrying me. Today i am totally fine without any symptoms of cancer, it was all confirmed by my oncologist that i am clean. Do not die in silence or rely only on western medicine herbal medicine is very effective. You can contact the doctor on (drambermurray@gmail.com) for more information about his treatment.

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