Joan Fong

First post: 11/14/2013 Latest post: 3/17/2017
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After I came back from a trip on October 3rd, 2013, I found it extremely painful to walk.  I didn't know it at the time, but the pain was due to a bone tumor that had caused a hairline hip fracture.  The pain was further magnified by an unrelated cough that I had developed.  When I initially went to the doctor, I was given medication for the cough and pain.  The x-rays did not indicate anything broken or arthritis.  In my mind, that was good news.  Later, the cough stopped, but not the hip pain.  Walking continued to be extremely difficult.  I saw the orthopedic doctor.  When the cortizone shot did not alleviate the pain, I went in for the MRI on Monday, 10/21.  The MRI revealed a disturbing picture with the bones.  On Wednesday, 10/23, I had a CT scan to find the primary source of the problem.  The next day, Thursday, 10/24, my doctor confirmed that there was a growth in my lung.  So the journey began.

On Tuesday 10/29, I had a PET scan and Wednesday 10/30, I had a bone biopsy.  Those test confirmed that I had Stage 4 lung cancer, as it had spread to the bone and to the lymph nodes.  I met with the oncologist on Monday, 11/4.  This is when I found out about the hairline fracture to my hip that was caused by the bone tumor.  Radiation therapy would be given to shrink or eradicate that bone tumor so that the regular bone could regenerate, allowing me to walk normally later.  In the meantime, I need to limit usage of my left leg to avoid further fracturing.  So, wheelchair, crutches and walker for a while.  Ten days of radiation therapy from 11/6 - 11/19 (tel:11/6 - 11/19).  So far, so good.  

We are awaiting the results of the genetic testing.  If I have this genetic mutation that is found with Asian women who never smoked with lung cancer, I can be treated with a drug, Tarceva, instead of chemo, as the first line of defense.  I'm praying that I have this mutation because the drug is less harsh to the body and it can provide a longer life expectancy.  

This has been a very hard diagnosis to swallow.  I am grateful for my family and friends who have been so supportive with love and encouragement.  God has been with me each step of the way to provide me with strength to carry on.  I am not fearful because I am assured of my eternal destiny.  I am so grateful for Ron, who has cared for me so well.  I am so blessed!  I hope to make the most of my time to enjoy my friends and to celebrate life!   /s/ Joan Fong November 2013

***** UPDATED 01/04/2017 *****

56 yo Asian Never Smoker dx 10/2013 with Stage IV NSCLC EGFR exon 19 with mets in lung, hip, pelvis and spine


- Plan A - palliatively fix the hip with 10 rounds of radiation Nov 2013 and let the hip naturally mend so I can walk again Jan 2014
- Plan B - 1st line of therapy Nov 2013-Sept 2014 - targeted therapy using daily oral pill 1st Gen TKI inhibitor Tarceva (erlotinib). Joan is EGFR exon 19 del positive. * Progression June 2014
              MILESTONE  ***  8 MONTH SURVIVAL JUNE 2014!!!!   
                      SAW YOUNGEST GRADUATE HIGH SCHOOL AND MIDDLE GRADUATE WEST POINT!  
                     MEDIAN SURVIVAL ANTICIPATED 8 MONTHS.  BEAT THE MEDIAN

- Plan C - 2nd line of therapy Sept 2014- Jan 2015- clinical trial of INC280 &Tarceva * INC 280 is for cMET overexpression. * Progression Jan 2015
               MILESTONE **** 12 MONTH SURVIVAL NOV 2014!!!!  MADE 30 YEARS MARRIAGE!

                     MORE THAN 50% DON'T SURVIVE 12 MONTHS.  BEAT THE AVERAGE

- Plan D - 3rd line of therapy Jan 2015-August 2015 - targeted chemo * Carboplatin/ Avastin/ Alimta 6 rounds, then maintenance Avastin/Alimta * Progression August 2015

- Plan E - 4th line of therapy August 2015 - June 2016 - 2nd generation TKI inhibitor Afatinib daily oral pill and every two week chemo infusion of Cetuximab * Progression Feb 2016 * - Liquid biopsy finds T790M, which is actionable mutation
              MILESTONE  **** 24 MONTH SURVIVAL NOV 2015!!!!
              MORE THAN 75% DON'T SURVIVE 24 MONTHS.  BEAT THE AVERAGE


- Plan F - Cyberknife new growth in the T8 spine March 2016 
- Plan G - Cyberknife new lesions in the liver (3) and the T8 spine March-April 2016 * Gold seed fiduciaries implanted into liver

- Plan H - Whole brain radiation therapy May 2016 * ten rounds of treatment *  Trial required MRI discovers 13 brain mets not known before.  Asymptomatic

- Plan I - 5th line therapy - * June 2016 to September 2016 *  Phase 1 clinical trial AZD9291 osimertinib (Tagrisso) and necitumumab (Portrazza)  Stable to slightly smaller at the end of cycle 2 (six weeks of treatment)  end of cycle 4 (12 weeks), lung still stable, but growth detected in liver.  PET confirms cancer activity in the liver and also in the sacrum as well as in the lung

Plan J - 6th line of therapy September 2016 * searching * October 13, 2016 started new clinical trial testing Onalespib (AT13387 an Heat Shock Protein 90 inhibitor) with erlobtinib (Tarceva).  CT shows Right Upper Lung  primary is almost as large as when first diagnosed having grown 50% in six weeks.  CT Scan at the end of eight weeks shows RUL primary stable, but progression in the liver. PET shows heightened activity in the bones.

When Plan J fails, as all targeted therapies eventually do, the next line of attacks are either standard of care Docetaxel with Cyramza (Ramucirumab)  or a clinical trial using an immunotherapy in combination with something else.  A PDL1 immunotherapy alone is not very good against EGFR patients.

             MILESTONE **** 36 MONTH SURVIVAL NOV 2016!!!!
             MORE THAN 90% DON'T SURVIVE 36 MONTHS.  BEAT THE AVERAGE.  THE 5-year SURVIVAL STATS ARE LESS THAN 5%


Progression December 2016 * Back MRI 12/8/16 shows Cancer growth in T5-T11 with fears of spinal cord compression T7-T9

Plan K * Ten rounds of external beam radiation to the T4-T12 (30Gy) December 2016

Plan L *  Paclitaxel (Taxol ®) and carboplatin (also known as Taxol/Carbo) starting after Christmas 2016

Plan M in search of an immunotherapy trial combo with something else.

***** UPDATED 12/23/16 *****

11/13 - 9/14 Tarceva * Progression found in June
9/14-1/15 Clinical trial NCT01911507 INC280 and Tarceva * Progression found in January
1/15-8/15 Carboplatin with Alimta/Avastin (6 cycles and then 4 cycles maintenance)  * Progression found in August
8/15-4/16 Afatinib* Progression found in Feb.  * Liquid biopsy finds T790M
3/16- SBRT Cyberknife metastatisis in T8 spine
4/16 - SBRT Cyberknife 3 met spots in liver 
5/16 - Whole Brain Radiation 13 mets in brain * discovered by trial baseline tests * asymptomatic 
6/16 - 9/16 * Clinical trial NCT02496663 Osimertinib and  Necitumumab * progression found in liver and heightened activity in the sacrum and reduced activity in the RUL.   Liquid biopsy findings were T790M suppressed by Osimertinib,  but new PIK3CA mutation discovered.
10/16 * 12/16 Clinical trial NCT02535338 Onalespib (AT13387 an Heat Shock Protein 90 inhibitor) with Erlobtinib (Tarceva) * progression found in liver and heightened activity in the bones.  Stable in RUL. * Spinal MRI reveals T5-T11 active with T7-T9 spinal cord compression concerns
12/16 * External Beam Radiation of T5-T11 * 30Gy
12/16 * Paclitaxel (Taxol ®) and carboplatin  start 12/30/16
12/16 * in search of immunotherapy trial combo

   

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