8.18.12: Day 1 – Lung cancer diagnosed (Stage 3). Initial Lung Cancer Diagnosed: Cancer was found in my left lung and labeled as NSCLC stage 3A (T2AN2MO-E).
9.18.12: Remove mass from the lung.
11.19.12: Second round of chemo.
9.20.12: Donated hair.
4.5.13: Scan results: Continue chemo with cisplatin.
4.25.13: Finished 30 radio therapies and 28 chemo therapies.
7.5.2013: Day 327 (10m23d) – Found tumor in cerebellum (metastasis)
12.15.16: Day 1586 (4y43d) – Found 2 lesions in left lung & lesions in Frontal Lobe.
Cancer Free (~ 3 years, 3 months, 22 days) 7.11.13 – 11/2016
12.30.16: Day 1601 (4y4m18d) – Starts Afatinib (this lasted 10 month and 10 days before mutation began).
5.21.17: Day 1737 (4y9m3d) Is feeling lethargic, seems sad not about life just about feeling sick all the time. Is taking many medicines to combat side effects of the Afatinib. Latest MRI revealed that radiation had removed one lesion and greatly reduced the other. This was nearly the same result for the lesions in the lung. Not gone, but medicine seems to be shrinking them.
11.9.17: Day 1909 (5y2m22d) Has been feeling tired but seems healthy otherwise. Is driving, not long distance or at night. Her thumbs are starting to hurt just as her toes have since being on afatinib. We went to the doctor for scan results which we had already accessed but wanted clarification. I recorded the conversation with Dr. Ibrahim. Essentially, the cancer has started mutating (probably early stages) but nonetheless it is starting to resist the afatibin targeted therapy. We now need a genetics test to determine the specific mutation. Best scenario it will be mutation T790m so she can start taking tarceva oral chemo. Which would last around 10 – 12 months. Dr. said we are not in a panic mode – although, clearly this is concerning as the cancer is ‘back’ and needs further attention. It also shows us that the cancer is actively trying to become resistant to medicine. New medicine will lower most current systems such as nails, acne, and diarrhea.
11.21.17: Genetics results show one alteration identified as TP53 N239K. The medical oncologist calls this inconclusive and has scheduled a biopsy for Nov 28.
12.19.17: Biopsy Results: Flare of the cancer if suddenly stop the Afatinib. Had one patient that went through 92 chemotherapies. Suggests lung cancer consult. Options should be considered. – This is a bit complicated. We received the results but with three options plus a shift in care management. Ayda will as of today be under the care of a new oncologist who is “world-renowned” in lung cancer research. The biopsy found 11 mutations (EGFR, MET, CDK6, KRAS, MYC, BCL2L2, CCNE1, NFKBIA, NKX2-1, SPTA1 E2188K, TP53 N239K). The tumor mutation burden is 1 Mut/Mb. The three treatment options to consider are:
Chemo: Carboplatin & Pemetrexed (IV every 3 weeks) Afatinib w/Avastin (IV targeted Therapy once every 2-3 weeks/Afatinib daily) Crizotinib (twice daily) Option 1 is most common and researched. Option 2 was recommended by the oncologist. Meet with the specialist in Indianapolis within a week +/- holiday conflicts. Hoping to have Dr. Nasser Hanna take over Ayda’s care at the Simon Cancer Center at IUPUI. Dr. Hanna suggested option 2.
2.27.17: Treatment Discussion: Oncologist in Indy suggested an additional 6 treatments options. He suggested Afatinib w/Avastin every 3 weeks. She will make a decision shortly and begin treatment. I took a picture of the options the doctor wrote on the board showing all treatment options. He confirmed that she had the EGFR, MET, and PDL-1 mutations and explained that there is no reason to explain why non-smokers develop these types of cancers. He was encouraged that Ayda is “young and healthy” and will probably be able to handle any treatment option she tries. Further stating that any option she chose would have good benefits.
1.4.18: Treatment Begins: Ayda began her first round of “chemo” this morning at 10am (Avastin). This will occur every three weeks for an undetermined amount of cycles. Current plan is 2-3 cycles then scans…
1.25.18: Cycle 2: Avastin
2.15.18: Cycle 3: Avastin
3.6.18: CT & MRI
3.8.18: Dr. Ahmed Abdel-Maksoud said nodule in brain, and cancer in bone in brain. Also .5 CM growth in at least 2 of the nodules in the lung. Reading the scans it seems that this information may not be correct. Sent an email to Dr. Lin, Dr. Nasser Hanna, Dr. Lin is talking to Dr. Silvidi’s assistant. Dr. Mak suggested Chemo to start the following Thursday. I think another solution besides chemo could be the solution.
3.12.18: Dr. Nasser wrote back, “I’m concerned too.” I don’t like this response, but it is what it is. I guess that just means he agrees with Dr. Maksoud, but I think it is a bit of lazy and uncaring feedback. Essentially they want to start chemo now because it’s faster than it would have been (maybe) for starting Crizotinib which would have been a targeted therapy. Although, Dr. Hanna did state about 4 months ago that any of the 6 options was good. I personally feel she could do something else but how does anyone know that isn’t fully invested in her life? Dr. Lin helped her make an appointment with Dr. Watson at IUPUI. He specializes in radiation. Hoping he will confirm if the brain scans is indeed in the bone and how much more radiation she could handle either now or in the future. What happens when pemetrexed and carboplatin stop working?
3.14.18: Dr Watson-appears to be in the bone. Will present at meeting to determine next steps. Scans showed half of cerebellum with cancer/infection. Possible steps inlcude biopsy, neurosurgery, 15 to 25 radiotherapy treatments.
3.15.18: Chemo #1: Carboplatin & Pemetrexed (IV every 3 weeks)
5.11.18: Scans: CT & MRI
5.16.18: Scan results: 25% reduction of nodules in the lung and “decrease” in the brain. Oncologist felt positive and “prays” for continued good results. Plan includes completing 2 more cycles (5 & 6) followed by another set of CT and MRI scans. If the results remain good, she will take a break from the carboplatin and only continue the pemetrexed to “give her body a break.”
Scans: CT Abdomen/Pelvis & MRI Brain/Head
Results: Brain, negative for new lesions, stable. Possible infection in lung. Previous findings remain stable. Continue chemo, begin antibiotics for possible lung infection.
8.8.18: Check-up: Set schedule for CT to confirm if previous scan was lung infection. Continue with chemo.
8.20.2018: CT Results & Consultation with new Oncologist: I am happy with my new oncologist. All oncologists at IU work in panels to discuss each patient’s treatment, progress and so forth. The oncologist explained that the scans were stable. After 8 treatment cycles with carboplatin and pemetrexed the doctor said it was time to switch to maintenance therapy. This will continue until the cancer grows past 5mm. The idea is to keep the cancer stable as stage 4 cancer will no longer disappear. Scan intervals will decrease to every three months rather than every 3 cycles unless symptoms are presented. My maintenance therapy will be pemetrexed everything 3 weeks via IV.
Possible future plans include immunotherapy or carboplatin but will depend on genetics / biopsy testing at that time.
My doctor wants to keep me active (enjoying life, family, shopping, movies, driving, and so forth).
I like that this particular doctor spent a lot of time with me and was very realistic in his expectations.
9.30.18: In Maintenance: Pemetrexed every three weeks until further notice.
8.29, 9.20, 10.10, 10.31
11.14.18: CT & MRI
11.21.18: Met with Dr. Salhab (oncologist) to go over the exams. The chest CT and the brain MRI show that the cancer is progressing in both areas and that the current chemo treatment is no longer effective. The brain has 2 new 5mm and 2mm lesions. The lung shows growth in several present lesions but no new lesions are seen. The doctor (in consultation with an oncology board and several personal colleagues) wants me to try a targeted chemotherapy named crizotinib. There is a 20% chance of this working. The team and personal colleagues of Dr. Salhab were unable to find a suitable trial after searching nationwide. Will scan abdominal area within a couple of weeks. Will receive an MRI in 3 months for a better understanding of the new lesion in the brain.
11.30.18: CT abdomen & bloodwork for genetics testing
12.1.18: Tried the crizotinib and the side effects were difficult to manage. My doctor in consultation with other oncologists found new research in which they believe that immunotherapy could be beneficial for my type of mutation (previously thought not to be effective for my mutation). I will be receiving pembrolizumab every 3 weeks via IV. Also see the article “2018 Nobel Prize in Medicine Awarded to 2 Cancer Immunotherapy Researchers.”
12.12.18: First treatment of immunotherapy begins (pembrolizumab). Continues every 3 weeks until further notice.
Treatments: 12.12.18, 1.2.19, 1.23.19, 2.13.19 (4 treatments until it was determined not to be effective).
12.19.18: Radiation treatment to the brain.
~ 2.1.19: back pain symptoms
2.20.19: MRI: Head and Spine
2.25.19: (6 years, 6 months, 7 days = 2382 days) Unplanned meeting with Dr. Lin (Radiation Oncologist)…
Dr. Lin discussed the findings of the 12 new and enlarged small (5-10mm) brain metastases. Will discuss treatment plan with Dr. Salhab. Is considering whole brain radiation therapy (WBRT) as stereotactic radiosurgery (SRS) is not an option.
2.27.19: Start whole brain radiation therapy (WBRT) for 10 treatments. Ends on 3.12.19. Shaved head.
2.28.19: CT Chest & Abdomen
3.2.19: CT Lung/Abdomen Impressions: “Interval progression of pulmonary and left parahilar lymph node metastatic disease. No evidence of metastatic disease to the abdomen or pelvis” For example, there is a left apical 4.2 x 3 cm mass which previously measured 3.2 x 2.1 cm.
3.6.19: Dr. Salhab explained that managing the brain was priority at this moment. He stopped immunotherapy as it is not working. Ordered a genomics biopsy for the left lung. Based on results will proceed with a treatment plan. Possible Scenarios: If T790M is present or cancer has changed to small cell this would open up more options. If cancer has not changed, then options may be limited to restart of targeted therapy: crizotinib.
3.7.19: Short conversation with Dr. Lin (Radiation Oncologist) after 7th WBRT treatment: Next MRI in 2 months unless symptoms. Continue steroids to help with symptoms for undetermined amount of time. This was after learning that Dr. Salhab (Oncologist) had stopped immunotherapy. Lung treatment is on hold until results of the genomics biopsy.
3.11.19: Genomics biopsy procedure
4.1.19: Dr. Salhab is currently on vacation. Results and next treatment options will not be presented until April 10, 2019. The lung has not been treated since 2.13.19.
4.18.19: The lung biopsy indicated the same type of mutation, EGFR and does not include T790M. A genetics board met and approved Osimertinib, a targeted chemotherapy to be taken at double the standard dose starting on April 19th. An EKG, heart scan, and chest scan were also ordered.
Dr. Salhab noted that this phase of treatment is called “symptom management and hospice care.”
4.19.19: Ayda had pain in her left side. Went to the ER. Diagnosis: 1. Increased size of the left apical and pleural based masses in the left hemithorax compatible with tumor progression. 2. New, small left pleural effusion and left pleural thickening suspicious for malignant pleural involvement. 3. New 10 mm soft tissue nodule in the right upper anterior chest wall, likely malignant.
4.24.19: Ayda had pain in her left side. Went to the ER. Received dilaudid for pain, toradol for inflammation and zofran for nausea.
Met with Dr. Tilman in place of Dr. Lin (Radiation Oncology) to discuss radiation options. Will discuss details on 4/26 during simulation.
4.26.19: Radiation simulation.
4.28.19: ER visit. Unable to keep anything down. Gave IV fluids and anti-nausea medicine.
4.29.19: Emergency visit to the cancer center. Two bags of saline IV fluids and 8mg of steroids.
Reduce Osermitinib from 160mg to 80mg. Rotate anti-nausea medicine.
Heart scan was canceled.
5.2.19: Consultation with Dr Salhab. Discussed recent ER visits and current symptoms of extreme exhaustion and nausea. Recent blood results indicated issues with the kidney probably a result of chemo and lack of fluids. Ordered IV fluids w/dexamethasone (8mg) for today and twice next week. Will see Dr Salhab again next week to see if symptoms alleviate.
5.6.19: IV Fluids with 8mg of dexamethasone.
5.7.19: Begin radiation to the left upper lung. Will receive 15 treatments.
5.8.19: Heart scan. Consultation with Primary Oncologist. IV Fluids.
Across clinical trials, cardiomyopathy (defined as cardiac failure, pulmonary edema, ejection fraction decreased or stress cardiomyopathy) occurred in 1.4% (n=11) of TAGRISSO treated patients (n=813); 0.2% (n=2) were fatal. In Study 1 and Study 2, Left Ventricular Ejection Fraction (LVEF) decline >10% and a drop to <50% occurred in 2.4% (9/375) of patients who had baseline and at least one follow up LVEF assessment. Assess LVEF by echocardiogram or multigated acquisition (MUGA) scan before initiation of TAGRISSO and then at 3 month intervals while on treatment. Withhold treatment with TAGRISSO if ejection fraction decreases by 10% from pretreatment values and is less than 50%. For symptomatic congestive heart failure or persistent, asymptomatic LV dysfunction that does not resolve within 4 weeks, permanently discontinue TAGRISSO.
5.23.19: Brain MRI: “Redemonstrated numerous (at least 12) intracranial metastases, all of which are either decreased in size or unchanged in size from prior.” 11 metastases decreased in size 1 was unchanged. Previous MRI metastases ranged in size from 4mm to 11mm. This MRI metastases ranged in size from 4mm to 8mm.
5.28.19: Genetics Testing: Ayda tested positive for non-working copy of TP53 p.N239K which also indicated that cancer is hereditary. This gene mutation was previously seen beginning in 2016.
5.29.19: AST/ALT bloodwork showed high results indicating problems with liver function probably due to daily oral chemo. Will stop taking for a few days until next blood work.
6.2.19: Ayda woke up around 4:30am with pain in her left chest. Called the doctor and told her to take another morphine tablet. Pain subsided enough for her to fall back asleep but keeps her in a very tired state. She has taken 45 mg extended relief morphine tabs in the past 24 hours.
6.8.19: Pain continues to be problematic. Recent CTA chest scan revealed stable nodules (compared 4.19.19 – 48 days), right lung infiltrate (most likely pneumonia).
AST/ALT normal. Heart normal. Right lung free of nodules and masses.
6.17.19: Biopsy to determine right lung treatment. After the procedure the right lung collapsed measuring up to 2.3 cm in thickness. Emergency chest tube and admitted to the hospital.
6.19.19: Released from the hospital.
7.2.19: Lung biopsy results: Streptococcus Mitis & Actinomyces. Referred to a specialist.
7.3.19: Increased pain meds. Felt lump below ribs. Scans next Wednesday.
7.10.19: CT scans.
Visit to the ER for increased pain in chest/back. Found lesion in thoracic spine and broken/fractured bone.
// Last night she seemed to be in a lot of pain. She said this morning that she wanted to take all the pain pills to make the pain stop. Putting cream on her back each night. Sort of helps. It’s sad because I’m not sure what else to do and she isn’t either. When she talks to the doctor about her pain he only responds with directions to increase pain medicine. It is starting to get scary because I do not want to lose my wife. Even though my wife today is different in many ways from 7 years ago, she is still has the same thoughts and feelings about life. Regardless of abilities she is the same.
7.11.19: Woke up with extreme back pain. Admitted to the hospital. Kyphoplasty performed to help reduce pain. Was given hydropmorphone.
// Dr. Salhab pulled me aside and asked me if I was ok with Ayda going into hospice. But during the visit with Ayda he decided to put this on hold.
7.12.19: Kyphoplasty performed on T3 and T4 (spine) resulting in immediate relief from severe pain. Biopsy taken.
7.14.19: Discharged from the hospital.
7.17.19: Met with the oncologist, Dr. Salhab. Next step includes radiation to the spine and larger wall lesions. Discontinue current targeted therapy treament (oral chemo). Will be put on intravenous chemotherapy called docetaxel and avastin after completion of radiation. Concerning the chemotherapy Dr. Salhab explained this would be “very much the last one.” Meaning, the last line of treatment available. Avastin was previously used so it’s possibel that drug might not be used.
Waiting on biopsy results from spine.
7.18.19: Met with Dr. Lin from radiation oncology. Developed up with a plan for treating the cancer in the spine. Should start the week of 7.29.19.
7.31.19: First day of radiation treatment for the spine, followed by 8/2 and 8/5.
8.1.19: Right side lung wall lesion and abdomen wall lesion radiation, followed by 8/2, 8/5, 8/6, 8/7.
8.5.19: Referred to palliative care.
Consultation with Dr. Stewart, general surgeon, concerning removing lesions greater than 3 cm’s:
“Surgery for those might be difficult to heal and that’s why I think radiation would likely be better. Now, I think we could do a biopsy to prove what we suspect those are cancerous lesions. I don’t think that’s necessary because they feel like cancer and you’ve got cancer proven in other places and you’ve already started radiation for those. If we were to remove that area to try for palliation obviously it wouldn’t cure anything then you would have a big wound there that might be difficult to heal it is possible the cancer could grow back into the wound and cause even more trouble. I think you’re in better hands during the radiation. I’m afraid the surgery isn’t going to help you. It just creates a new problem. That’s why it is so hard when you’re trying to live with cancer and trying to make the right decisions. You want to live as long as you can and you want to live as pain free as you can. And if they surgery doesn’t do either one it doesn’t make you live longer and it really doesn’t make you pain free then it really doesn’t help and that’s how I feel about that.”
8.6.19: Met with Dr. Langhofer (palliative care). Explained that Ayda would be on pain medicine for the rest of her life. He will help see that she remains comfortable.
8.8.19: Had extreme pain in right side chest wall lesion. She decided not to go to the ER.
8.9.19: Begin chemo (Docetaxel and Zoledronic Acid). This was the only dose of docetaxel that was administered. She was ordered off chemo a few days later.
Admitted to the hospital for intractable pain. Two MRI’s ordered. Hydromorphone via hand pump given.
8.16.19: First Day of Hospice Care
9.20.19: Ayda took her last breath at 6:11am.