Wife Update - Bad news and Good news - 1257366

Thanks for the reply Dr. West. Unfortunately, this cancer is such an individual specific disease that it is very difficult to choose the next step. In reading the Radiologist’s report again, apparently with the fluid being in the same spot they had trouble determining whether the primary mass was growing. When would it be safe to do another scan since the fluid has been drained? Would a low dose CT scan provide any useful information?
Thank you for the links Janine, since I am on GRACE every day I do remember reading them before but the links were a good reminder of some of our options. Yes, she is feeling much better with the fluid drained and can now walk up a flight of stairs without being out of breath. Still a little cough though.

Wife 64 never smoker 12/11-DX NSCLC Aden, small left pleural eff
12/9/11-CT scans-3cm mass left lung,”innumerable nodules in both lungs under 5mm”
12/20/11-PET scan 3cm lower left lung mass, mets both lungs, extensive osseous mets
12/14/11-biopsy-neg for EFGR,ALK,ROS1,KRAS,BRAF mutations
12/21-Begin Alimta(pemetrexed) 3 wk intervals
2/12-MRI brain,2 lessions 2.5mm&2.0mm,does not appear to be brain mets
3/12-7/12- 4 chest x-rays,left lung mass sig reduced,”tiny nodules both lungs”,no pl eff
12/11-8/12-blood serum markers CEA 403.7 to 7.1
12/11-10/24/12 - 14 sessions of Alimta in 3/4 wk intervals
10/24/12-4/3/13 – Chemo Break
1/7/13 – CT scan stable – No progression, 5mm loculated effusion upper left lung
2/18/13 – 4/1/13 – Increase in CEA 7.1 to 35.0, other blood numbers normal
4/3/13 – 5/29/13 – 3 more sessions of Alimta (17 Total)
4/9/13 – MRI Brain – No mets
6/12/13 – CT scan – Large pleural effusion at site (lower left lung) of primary tumor, all other mets stable/regressed
6/14/13 – Thoracentesis - drained 600ml of fluid

Thank Janine that a big help. We just have to wait until next week when her doctor is back from vacation to get the OK
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That picture was taken in January on her break from chemo - she doesn't look like she has had 14 Alimta infussions - thanks for the comment.

Thanks Dr. West. We will definitely have another scan before making a treatment decision.

Wife 64 never smoker 12/11-DX NSCLC Aden, small left pleural eff
12/9/11-CT scans-3cm mass left lung,”innumerable nodules in both lungs under 5mm”
12/20/11-PET scan 3cm lower left lung mass, mets both lungs, extensive osseous mets
12/14/11-biopsy-neg for EFGR,ALK,ROS1,KRAS,BRAF mutations
12/21-Begin Alimta(pemetrexed) 3 wk intervals
2/12-MRI brain,2 lessions 2.5mm&2.0mm,does not appear to be brain mets
3/12-7/12- 4 chest x-rays,left lung mass sig reduced,”tiny nodules both lungs”,no pl eff
12/11-8/12-blood serum markers CEA 403.7 to 8.9,CA-19 5210 to 32
12/11-10/24/12 - 14 sessions of Alimta in 3 wk intervals
10/24/12-4/3/13 – Chemo Break
1/7/13 – CT scan stable – No progression, 5mm loculated effusion upper left lung
2/18/13 – 4/1/13 – Increase in CEA 7.1 to 35.0, other blood numbers normal
4/3/13 – 5/29/13 – 3 more sessions of Alimta (17 Total)
4/9/13 – MRI Brain – No mets
6/12/13 – CT scan – Large pleural effusion at site (lower left lung) of primary tumor, all other mets stable/regressed
6/14/13 – Thoracentesis - drained 600ml of fluid

Just a quick update on my wife’s status. She had another CT scan last Friday with limited results due to the scan being done without contrast. It was late Friday evening and we could not get in contact with our Onc in order to change the scan instructions. Anyway, the scan showed everything stable with just a small left effusion (about the same as the x-ray after the Thoracentesis). Doctor’s appointment yesterday with his recommendation to change chemo drugs from Alimta to a carbo doublet. Due to what I believed was not enough information to make a change, I asked that she continue with at least one more Alimta infusion and then scan again. She received her 18th infusion yesterday. 700mg vs. the previous 800mg since at 5’5” and 120 lbs. she had not been tolerating the higher last three doses very well. Another scan and doctor’s appointment in three weeks.

The saga continues. As background, we have been trying to get into either an anti PD-1 or PDL-1 trial at JH since we met with Dr. Brahmer last August – Our Onc has been keeping her updated since then. For the past couple of months my wife has become symptomatic with persistent dry cough, SOB, recurrent (2) pleural effusions & extreme fatigue. Since recent CT scans have been inconclusive on primary tumor progression, Dr B at JH suggested that we do a VATS procedure in part to see if she was now progressing and thus eligible for one of the trials. VATS performed 7/17/13 with pathology report received today. Have not discussed with our Onc since he is out of town until next week but from reading the report I am really puzzled. 500ml of fluid drained – benign but with acute and chronic inflammation. Pleurodesis performed. Left decortication & pleural biopsy – neg. for malignancy. Left wedge resection – no invasive cancer noted but extensive pleural thickening with areas of atelectasis. Additional left lung decortications – Neg. for malignancy but chronic inflammation. Pleural peel – fibrous with inflammatory cells – neg for malignancy. Primary mass could not be identified. I think this would be a good report if she not displaying multiple symptoms? Although probably not good for getting acceptance into the clinical trials.

Wife 64 never smoker 12/11-DX NSCLC Aden, small left pleural eff
12/9/11-CT scans-3cm mass left lung,”innumerable nodules in both lungs under 5mm”
12/20/11-PET scan 3cm lower left lung mass, mets both lungs, extensive osseous mets
12/14/11-biopsy-Adno confirmed -neg for EFGR,ALK,ROS1,KRAS,BRAF mutations
12/21-Begin Alimta(pemetrexed) 3 wk intervals
4/9/13 – MRI Brain – No mets
6/12/13 – CT scan – Large pleural effusion at site (lower left lung) of primary tumor, all other mets stable/regressed - 6/14/13 – Thoracentesis - drained 600ml of fluid - 6/28/13 CT scan stable w/sm effusion - 7/1/13 Alimta infusion (18th)
7/17/13 – VA

As a follow up to yesterday’s post, has anyone had Alimta (pemetrexed) completely kill malignant primary lung tumors as well as other malignant nodules in the same lung? I guess the pleural effusions could have been caused by “chronic inflammation” and the persistent cough and SOB by the pleural effusions. The extreme fatigue could be attributed to the inflammation but what is causing the inflammation? Could it be the 18 infusions of Alimta? Has anyone have experience with something similar?

Wife 64 never smoker 12/11-DX NSCLC Aden, small left pleural eff
12/9/11-CT scans-3cm mass left lung,”innumerable nodules in both lungs under 5mm”
12/20/11-PET scan 3cm lower left lung mass, mets both lungs, extensive osseous mets
12/14/11-biopsy-neg for EFGR,ALK,ROS1,KRAS,BRAF mutations
12/21-Begin Alimta(pemetrexed) 3 wk intervals
2/12-MRI brain,2 lessions 2.5mm&2.0mm,does not appear to be brain mets
3/12-7/12- 4 chest x-rays,left lung mass sig reduced,”tiny nodules both lungs”,no pl eff
12/11-8/12-blood serum markers CEA 403.7 to 8.9,CA-19 5210 to 32
12/11-10/24/12 - 14 sessions of Alimta in 3 wk intervals
10/24/12-4/3/13 – Chemo Break
1/7/13 – CT scan stable – No progression, 5mm loculated effusion upper left lung
2/18/13 – 4/1/13 – Increase in CEA 7.1 to 35.0, other blood numbers normal
4/3/13 – 5/29/13 – 3 more sessions of Alimta (17 Total)
4/9/13 – MRI Brain – No mets
6/12/13 – CT scan – Large pleural effusion at site (lower left lung) of primary tumor, all other mets stable/regressed - 6/14/13 – Thoracentesis - drained 600ml of fluid - 6/28/13 CT scan stable w/sm effusion - 7/1/13 18th Alimta infusion (18th)
7/17/13 – VATS procedure – drained 500ml fluid, pleurodesis, biopsy/wedge resection left lung – all fluid & tissue benign

Thanks for the reply Dr. West. No, I would not want you (or anyone else) to speculate on this specific case. I was just wondering if anyone else had a similar experience with pemetrexed or any other chemo drug for that matter. Specifically regarding inflammation caused by a drug that resulted in a pleural effusion. Thanks again.

Dr. West thanks for the information. My wife was released from the hospital today and I had the opportunity to talk to her Thoracic surgeon at some length. He could only speculate regarding the origin of the inflammation but he did say that it was fairly common when malignant cells are/were present as well as several other lung related diseases. He also said that he “biopsied a lot of tissue from my wife’s left lung and more that he normally would” since we required tissue for multiple testing. He indicated that he biopsied any tissue that looked suspicious for cancer cells. Of course he obviously couldn’t visually detect microscopic malignant tissue but he is a very experienced, highly regarded Thoracic surgeon. We will schedule a meeting with her Oncologist next week. No need to reply but since this is appearing to be a very unusual case, I thought I would keep you updated.

Another quick update as we met both with her Oncologist & Thoracic Surgeon today. X-ray this morning indicated that the left lung has fully expanded and the pleurodesis is appearing to be successful. Healing is progressing but she still is experiencing a good deal of pain. Her Onc stated that her situation is shaping up to be a very unique case since the biopsies, wedge resection and fluid were all benign as well as her two scans in June showed nodules in both lungs either shrinking or had disappeared. As we expected, he cautioned that most likely there are microscopic cancer cells still floating around in the lungs as well as possible other parts of the body. She will restart chemo again in the next 2 to 3 weeks depending upon the healing progress. He recommended switching from Alimta to Gemzar due to possible toxicity build up with Alimta. With that as the back drop, can she ever be declared NED with the original diagnosis of stage IV adeno?

Wife 64 never smoker 12/11-DX NSCLC Aden, small left pleural eff
12/9/11-CT scans-3cm mass left lung,”innumerable nodules in both lungs under 5mm”
12/20/11-PET scan 3cm lower left lung mass, mets both lungs, extensive osseous mets
12/14/11-biopsy-neg for EFGR,ALK,ROS1,KRAS,BRAF mutations
12/21-Begin Alimta(pemetrexed) 3 wk intervals
2/12-MRI brain,2 lessions 2.5mm&2.0mm,does not appear to be brain mets
1/7/13 – CT scan stable – No progression, 5mm loculated effusion upper left lung
2/18/13 – 4/1/13 – Increase in CEA 7.1 to 35.0, other blood numbers normal
4/3/13 – 5/29/13 – 3 more sessions of Alimta (17 Total)
4/9/13 – MRI Brain – No mets
6/12/13 – CT scan – Large pleural effusion at site (lower left lung) of primary tumor, all other mets stable/regressed - 6/14/13 – Thoracentesis - drained 600ml of fluid - 6/28/13 CT scan stable w/sm effusion - 7/1/13 18th Alimta infusion (18th)
7/17/13 – VATS procedure – drained 500ml fluid, pleurodesis, biopsy/wedge resection left lung – all fluid & tissue benign

Judy, she has not taken prednisone or antibiotics – only steroids with each Alimta infusion. She is breathing much better since the VATS procedure that included removing the fluid from the pleural effusion. She still has some cough issues but the doctors think that will be resolved with the healing from the VATS. Yes, we are extremely fortunate to have excellent doctors in this part of Virginia. In addition, we are blessed to have access to the wealth of information on this Cancergrace.org site.
Thanks for the input.

Steve

It has been a while since I last posted an update on my wife progress so here is the latest and of course I also have a question. Her scans have shown slight regression in the chest/lungs and abdomen after 4 infusions of Carbo/Alimta. CT scans have generally been stable since November with largest nodule 11mm as noted in a CT scan yesterday. However, in preparation for participation in a local Hoffman-La Roche clinical trial with MPDL3280A, she had a brain scan (MRI) yesterday that came back with one 6.5mm lesion and a “thickening of the left calvaria”. The radiologist noted that this could represent a manifestation of metastatic disease. Her last MRI was in April 2013 that came back everything clear. My question is – can a biopsy be done on the skull cap and if this turns out to be metastatic is WBR the only option? She is asymptomatic so this MRI report is a real shock.

Jim & Dr. West,

Thank you for the reply, it was really helpful. Unfortunately, as expected we were excluded from the trial this morning due to the brain lesion. Active central nervous system metastases was part of the trial's exclusion criteria. Thanks again, Steve

As a follow up since being excluded from the MPDL3280A trial March, we decided to have SRS to the 6.5 mm lesion in the brain and wait (without any chemo) to be reconsidered for the trial. Unfortunately, the next MRI 5 weeks later showed another brain met (3.0 mm) that, once again, excluded her from the trial. In the mean time she was experiencing progression in the lungs, ribs and clavicle in addition to the brain. Two more infusions of Alimta and scans show her stable but somewhat symptomatic with chronic cough and minor pain in head and left clavicle. Became symptomatic waiting 4 months preparing for the trial.

The good news is that with tissue remaining from the biopsy required for the trial we were able to do “next generation sequencing” for biomarkers. The report indicated that she is HER2/ERBB2 positive. After watching several web casts and doing research on this site it appears that Afatinib (Gilotrif) has potential efficacy for this mutation. Are there any other agents (TKI inhibitors) that might be used? This appears to not be a common mutation for NSCLC since most information relates to breast cancer.

Dr. West, thanks for the quick response.

Steve

My wife Carol passed away a month ago today (10/16/2015) and I am just now getting enough strength to post. Her lungs became so overwhelmed with innumerable nodules and masses that she could no longer expel enough carbon dioxide to live. This was after 16 days in the hospital with the last two in ICU. As a note she was tested for PDL-1 expression and exhibited 20% expression. This test was done two weeks before she passed and after she had two infusions of Nivolumab in early May 2015.
I would like thank everyone on Cancer Grace for all of the invaluable information and knowledge that was a terrific resource over the almost four years of fighting this horrible disease. Special thank you to Dr. West who created this site as well as the other contributing doctors who routinely donated their valuable time. Also, thanks to Jim and Janine who are really both knowledgeable and compassionate in their responses. In addition, thank you to Webmaster Mark and the other Cancer Grace staff.

Steve (Heartbroken)