St Michael Posted October 6, 2016 Posted October 6, 2016 Hello everyone. I am brand new to the forum and this is my first post. About four to five weeks ago my mother, age 62, was diagnosed with Stage 3a Adeno-squamous carcinoma - NSCLC. She has never smoked, but was occasionally around second hand smoke during her life. She is currently being seen at the Dana Farber Cancer Institute - Women and Brigham's Hospital in Boston, MA. Her tumor is approx. 3 cm x 3.5 cm in her left, upper lung area. Two lymph nodes (upon mediastinascopy) were shown to be infected at this point. PET scan shows no current metastasis (very thankful) to other organs. The Thoracic surgeon (Dr. Colson) and Oncologist (Dr. Jacobson) have said that her tumor is currently too close to a main vein near her heart for surgery. They have prescribed her a chemotherapy doublet consisting of Cisplatin and Pemetrexed, which she starts tomorrow, in attempt to reduce the tumor and pull it away from the vein to make resection possible. Radiation was not recommended as part of her neoadjuvant therapy at this point because the doctors feel that it may "melt" the tumor onto the vein of concern. I was looking to see if any of you here have experiences with these two doctors or Dana Farber, this type of lung cancer or this chemotherapy doublet - specifically if it is successful in shrinking tumors. I am trying to be optimistic, but realistic about the situation. I have read that resection is the best chance at long term survival. Any feedback would be greatly appreciated. Thank you all and god bless. Quote
Tom Galli Posted October 6, 2016 Posted October 6, 2016 St Michael, Welcome here. We don't endorse physicians or treatment facilities in this forum but you can Google the Dana Farber Cancer Institute and easily find useful information to validate its reputation. I'm not a doctor but a lung cancer survivor who experienced a reduction in tumor size and numbers from chemotherapy alone - twice. My second line therapy, the drugs Taxol and Carboplatin, was administered after tumors appeared in my left lung after my right was removed. After 6 infusions administered over the course of 18 weeks, the 3 recurrent tumors in my left lung were declared NED (no evidence of disease) by both CT and PET scans. Unfortunately, a year later, one tumor returned to my left lung and I again had 6 infusions of the same drugs. Again, the tumor was deemed NED, but it returned again and I had stereotactic radiation (CyberKnife) to finally eliminate the tumor. So, if your objective is to shrink the tumor to allow surgery, then your mother is on the right treatment path. From what I read, Cisplatin and Pemetrexed are the standard of care for treatment of NSCLC when surgery is not possible. So be optimistic; this combination of drugs can be very effective. Surgery is indeed the best way to deal with lung cancer but it is not the only way. There are emerging therapies called targeted treatment and immunotherapy that are very effective treatment methods. Here is some information about them. https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy and https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy My nearly 13 years of surviving lung cancer taught me that the primary effect of chemotherapy is to extend life. No one knows how long, but no one really knows how long one will live. I've learned a better approach is to enjoy the life I have and the extension I'm granted rather than fret over how much time I have left. This is so important because it took me a while to realize this prospective and I wasted a lot of life fretting and worrying. Be optimistic but help your mother enjoy her life every day. And, spend time enjoying her company. Stay the course. Tom BridgetO 1 Quote
St Michael Posted October 6, 2016 Author Posted October 6, 2016 Hi Tom. Thank you for your response and the information. You certainly have been through a lot and your story is quite inspirational. From what I read, adeno-squamous lung carcinoma is listed to be rare and aggressive. I have not found anything to explain what vulnerabilities (if any) the tumor has in respect to chemo. Some of the clinical studies on neo vs. adjuvant chemo are confusing, but I am happy she is beginning her chemo and her fight. I pray that she can survive 13 years. I have heard many positive things about the nanoparticle generator and the potential it has with respect to cancer treatment. Have you heard of this? Quote
Tom Galli Posted October 7, 2016 Posted October 7, 2016 St. Michael, You are right, adeno-squamous lung carcinoma is rare and I am not able to find much in the literature about response to chemo. Is that because it is a very rare form of the disease or is it because few have undergone treatment? I don't know. I have first hand experience with nanoparticle research and note the literature on nanoparticle use as delivery mechanisms for therapy into cancer cells but the complexity of the literature is way beyond my engineering-based nanoparticle knowledge base. Your questions about vulnerabilities of adeno-squamous lung cancer to chemo are best addressed to your mother's treatment team. Let us know how she progresses with the chemotherapy. Stay the course. Tom Quote
St Michael Posted November 15, 2016 Author Posted November 15, 2016 Hi tom. I hope all is well with you and the family. Just a quick update - My mother just received a CT scan after completing her second round of platinum doublet chemo. The side effects have been rough for her. Very thankfully her lung tumor reduced by about a third, now making surgery possible for her. The thoracic surgeon and oncologist want to give her one or two more chemo sessions to try and reduce the tumor further to ensure clean margins are achieved with the surgery. They plan on giving her chemo and radiation after the surgery as well. Since she has the EGFR mutation, They mentioned immunotherapy as a second or third line treatment in case of a recurrence. Still a long road ahead, but we are steady as she goes. God bless. Quote
Tom Galli Posted November 15, 2016 Posted November 15, 2016 St. Michael, This is very good news indeed! I'd say it is celebration time because victories against our beast are few and far between. The plan was shrink and the plan was achieved. Further pre-surgical chemo should be more tolerable because we have a surgical solution on the table. So more than hope is working as a treatment measure. Post surgical chemo is normal (if there is such a thing in lung cancer). It is "normally" given at reduced strength (again normal applies) and fewer courses than standard of care chemo. Post surgical radiation is something I've not heard about except for stereotactic radiation. Here is a good summary about radiation treatments common to lung cancer. I don't know how the EGFR mutation plays in adeno-squamous NSCLC. But, your mom is attended by pros and I'm sure they know. So, you are right about the long road ahead but it is straight and with fewer U-turns now that we know that chemo is having the desired effect. Stay the course. Tom Quote
St Michael Posted November 30, 2016 Author Posted November 30, 2016 Hi tom. Thank you for the response. I hope all is well. Mom has now been scheduled for lobectomy surgery in two weeks for her 3a lung cancer. Her oncologist and thoracic surgeon met and decided that three neoadjuvant chemotherpy sessions were enough and that her tumor/lymph nodes were not likely going to reduce any further. She has two lymph nodes effected, one near her heart. This is melancholy news because she is very nervous for surgery and I and our family are nervous for her. I reassure her by telling her that surgery has a survival benefit. I have also read that tumor/lymph node reduction via neoadjuvant chemo prior to surgery is a good prognostic sign. In your research have you read anything similar? Thank you and God bless. Quote
Meloni Posted November 30, 2016 Posted November 30, 2016 St. Michael, I had a lobectomy (right middle lobe) in May this year, plus removal of some lymph nodes, after radiation and chemo. I was SUPER nervous, but my surgeon and his team were amazing and did a great job. It takes a good amount of time to recover, but your mom will probably have good pain medicine afterwards that will help. Did they give her the little breathing tube to practice with yet? That's REALLY important to keep up with, even if she feels silly. Make sure she practices beforehand, and DEFINITELY make sure she practices regularly afterward. I've heard good things about Dana-Farber. I'd definitely be checking it out if I were closer. Meloni Quote
Tom Galli Posted November 30, 2016 Posted November 30, 2016 St. Michael, How can one not be nervous about surgery? I had four thoracic surgeries in the span of 10 months and you'd think one would get comfortable with the routine. Well I didn't! Surgery is serious and worthy of worry but the payback in terms of survival is high. So even though it took four surgeries to solve my problem, I'd still choose the surgery path if I had to do it again. The device Meloni is talking about is called a spirometer and her idea of getting your mother accustomed to "keeping the ball up" before surgery is a very good idea. Ask your mother's surgeon's practice nurse for a spirometer and set her to practice. She'll get lots of post surgical "coaching" from the respiratory technicians and if she knows the drill before surgery, she'll know what to expect after. Yes, reduction in size and number of tumors from treatment prior to surgery is a good sign. I have to believe the surgical plan is to snip those affected lymph nodes during her lobectomy. Stay the course. Tom Quote
St Michael Posted December 13, 2016 Author Posted December 13, 2016 Hello all. My mom is having her lobectomy today along with the surgical removal of her two known positive lymph nodes. Her PET scan yesterday showed an additional reduction in tumor size and her lymph nodes slightly decreasing in activity on her PET. I am grateful to hear this and hopefully it is a indicator future positive results. Hopefully that's all she has as far as lymph node involvement and there are no surprises. Unfortunately the VATS surgery plan went out the window. She is having the older thoractomy surgery because her thoracic surgeon wanted to be overly cautious during the surgery because of the tumors location near her heart. She, I and my whole family are extremely nervous. Please keep us in your prayers. God bless. Quote
Tom Galli Posted December 14, 2016 Posted December 14, 2016 St. Michael, I had one of those "older thoracotomy surgeries." I was up walking laps the day after surgery and discharged 4 days later. So here is what to anticipate. She'll likely have a chest tube. No, removal of the tube doesn't hurt all that much. She'll have some pain but likely she'll have a morphine device she can use every 15 minutes if need be. Encourage her to use it. She'll need pain meds for a couple of days. Here is what you need to know to help her translate to home. If she doesn't have an adjustable bed, she may need overside pillows to allow her to rest upright in her bed at home. Buy a number of these at a local mattress store and help her settle into a comfortable sleeping position. Pillow arranging will take some time so you may be purchasing more. Your mom may need to learn alternate ways of getting out of bed. Before my surgery, I'd hoist my self out of bed by pushing down on my elbows. That didn't work after surgery and I needed to learn how to roll out of bed on the side opposite my incision scars. You need to help her learn this skill. I would advise against flying for about 3 to 6 months. My doctor forgot to tell me about aircraft cabin pressure and painful chest incisions. Some people experience pain for a number of years when flying on an airliner. You'll have many more questions and ask away. Hoping for good results. Stay the course. Tom Quote
St Michael Posted December 14, 2016 Author Posted December 14, 2016 Hi Tom. Thank you for the quicks response(s). Apprently the surgeon started with the operation with the VATS to see how she would fair and felt during the surgery that she could stick with it, so she switched back to the original plan. We were happy to hear that. The surgeon mentioned after that she was able to remove the entire tumor and the two infected lymph nodes along with sampling several other nearby nodes by the tumor. She believed she obtained clean margins, but pathology will give us the final answer on everything. I am looking into the pillow reccomendation. She was in quite a bit of pain, but today was better than yesterday and she will be home for Christmas. I want to make sure she is comfortable (as much as possible). Her team mentioned that chemo and radiation may be in her near future after she recovers in attempt to destroy any micrometastis. What can I expect from her adjuvant therapy? She did respond well to chemo which reduced her tumor and lymph node involvement by 50%. Radiation would be a new addition for her. They mentioned saving precision medecine and immunotherapy as third and fourth line treatments. Your thoughts? God bless Quote
Tom Galli Posted December 14, 2016 Posted December 14, 2016 St Michael, As strange as it may seem, I can't answer your question about adjuvant therapy. I had so many complications from my pneumonectomy that I never received it. After nearly a year's worth of surgery, my first scan showed metastasis to my remaining lung and I started down the path of first, second and third line chemo treatments. But, from what I know, radiation is not normally associated with adjuvant therapy and thus the concern about progression to lymph nodes in the chest. Hopefully, the pathology report will shed some light on further lymph node involvement. Celebrate a successful surgery and a wonderful Christmas. Wish your mother my best Christmas wishes and tell her I am praying for her continued good fortune. Stay the course. Tom Quote
St Michael Posted December 15, 2016 Author Posted December 15, 2016 Thanks Tom. I hope you and everyone else here has a very merry Christmas as well. Will keep you posted on the pathology report. Today was a big improvement for her as far as pain goes. Sounds pretty crazy considering its major surgery. They have her walking around and everything. Something to be very grateful for indeed. God Bless. Tom Galli 1 Quote
St Michael Posted December 19, 2016 Author Posted December 19, 2016 Hi again Tom and everyone else here. Just a small update, mom will be released from the hospital later today. It has been just under a week since her lobectomy. She had a slight heart palpitation that the doctor just recently got under control. They state that it can be a common issue after surgery. The pathology report also can back today. The doctor/oncologist report that they were able to achieve clear margins for her. Although they sampled many lymph nodes, only the two we already knew about contained any known trace of disease. We are very grateful for this news. Thanks Tom and everyone else for their support. God bless and Merry Christmas. Tom Galli and LaurenH 2 Quote
Tom Galli Posted December 19, 2016 Posted December 19, 2016 St. Michael, Now you will enjoy the best Christmas. Mom home and NED - no evidence of disease! Wonderful news! Enjoy and. Stay the course. Tom Quote
LaurenH Posted December 20, 2016 Posted December 20, 2016 That's wonderful news St. Michael! I am very happy for you and your family! Wishing all of you good health, hope, happiness, and healing in the new year! Lauren -- Digital Community Manager LUNGevity Foundation Quote
St Michael Posted December 21, 2016 Author Posted December 21, 2016 Thanks to both of you. Merry Christmas! Quote
St Michael Posted June 17, 2017 Author Posted June 17, 2017 Hi all. I hope everything is going as good as possible for everyone... Just an update....My Mom is still recovering from the radiation to her mediastinum post lobectomy surgery (and about 8 months after induction chemo). It has caused some inflammation to her lungs and she has been prescribed pregnisone (sp?) to combat that issue which has helped some. Prior to her lobectomy in her right lung, two small nodules were detected via CT scan in her left lung. This Was about 8 months ago and those two nodules remain to this day, even after the chemo. They did not illuminate via PET scan. They are too small to biopsy and her doctors are watching them closely, but don't seem too concerned. Does anyone have experience with a situation like this? I don't think they would have done surgery in the first place if there was a concern the cancer has spread to both lungs? Thank you all for any information on this. god bless Quote
Tom Galli Posted June 18, 2017 Posted June 18, 2017 St. Michael, Experience with tiny non metastatic nodules? Well yes, I do. So do many others. I also completely agree on your statement about surgery and concern over possible mets in both lungs. It would not have happened. I hope her scans continue to show NED. Stay the course. Tom LaurenH 1 Quote
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