LOVEMAMA Posted July 19, 2018 Share Posted July 19, 2018 Hello everyone, I am new here. Hope we could help each other. In early March 2018, my mother was diagnosed with lung cancer adenocarcinoma Stage 4, multiple nodules in the lungs and liver metastasis. On April 24, we did the first chemotherapy with the drugs pemetrexed and carboplatin, after two treatments, lung nodules and liver metastasis the lesions were significantly reduced, the primary original lesions were reduced by 50% and then two other chemotherapy sessions were performed. The protocol was the same as before and the BONE CT scan showed that there were multiple bone turnovers in the whole body, no mutation in the detection (ALL negetive for target treatmet) and the IMMUNE PD1 Keytruda TMB response rate was 10%. The doctor will use the PD1 Keytruda for the second line treatment for my mother, start from next Friday 27/07/2018. The chemo works very well for my mother, but the bone is progress. I dont know what is the next step... I love my mother so much and this is like earthquake for me and the family. Hope she could feel better. Thank you everyone... Link to comment Share on other sites More sharing options...
Steff Posted July 19, 2018 Share Posted July 19, 2018 Hi there, My mom, too, has adenocarcinoma, advanced stage. Her original diagnosis was 3A in 2015. She had a lobectomy then follow up chemo and radiation. Lung cancer did what it does and it came back within 1 year. Now, my mom has been on Keytruda for nearly a year. Her NSCLC recurrence showed up in a mass on the back of her trachea. It's been a tough year, I'm not going to lie. But the easiest part of it all has been Keytruda. She began the treatment with Keytruda + chemo combo that is standard of care now. The chemo was really tough on her, but when she started receiving Keytruda only, things got so much better. After nearly a year, the only issue she is having that can be directly contributed to Keytruda is very itchy skin on her arms. We are working on getting that under control. Cancer-wise, all looks good. My mom is not the only success story for Keytruda. Immunotherapy is very common place now and tons of late stage lung cancer patients are benefiting from Keytruda even if they have a low expression of PD-L1 cells (my mom is over 90%). When my mom was first diagnosed with her recurrence, I looked EVERYWHERE for hope. It was hard to find. That is until I found Lungevity and these forums. We are here for you, we are here for your mom. My main takeaway from conversing with the members of this group is that there is hope, lung cancer is not only survivable, but you can LIVE with it. I recommend checking out the immunotherapy information on Lungevity's website to read up on the drug, it's common side effects, and other pertinent info. You can also enroll in weekly emails from the makers of Keytruda that sometimes have helpful tips and they have a nurses line too (I've never used it, but it's available). I like your reference to lung cancer being an earthquake...it does shake all involved and there are aftershocks for forever. Not knowing next steps at this point is pretty normal and being nervous about that is okay. Once the routine of Keytruda is established and you see that she is handling the drug well, things seem to calm down so you can ready yourself for the next battle. Hopefully Keytruda will be the thing that knocks your mom's lung cancer is back. Take care, Steff Link to comment Share on other sites More sharing options...
LOVEMAMA Posted July 19, 2018 Author Share Posted July 19, 2018 29 minutes ago, Steff said: When my mom was first diagnosed with her recurrence, I looked EVERYWHERE for hope. It was hard to find. That is until I found Lungevity and these forums. We are here for you, we are here for your mom. My main takeaway from conversing with the members of this group is that there is hope, lung cancer is not only survivable, but you can LIVE with it. I recommend checking out the immunotherapy information on Lungevity's website to read up on the drug, it's common side effects, and other pertinent info. You can also enroll in weekly emails from the makers of Keytruda that sometimes have helpful tips and they have a nurses line too (I've never used it, but it's available). I like your reference to lung cancer being an earthquake...it does shake all involved and there are aftershocks for forever. Not knowing next steps at this point is pretty normal and being nervous about that is okay. Once the routine of Keytruda is established and you see that she is handling the drug well, things seem to calm down so you can ready yourself for the next battle. Hopefully Keytruda will be the thing that knocks your mom's lung cancer is back. Thank you so much Steff, as you said, the cancer does shake all involved and there are aftershocks for forever. I love my mother and I am the only child (son) of the family. I will be the one who take care of her and let her feel happy everyday. And as you mentioned, we are together, there is hope... Hope your mother feels better about the arm... she is so lucky to have such a great daughter like you! BTW I saw the photo of you and your mother after the concert! She looks great and so happy! I can tell you that I cry when I saw that photo because I am so happy for you and your mother and I saw HOPE for my mother and our family too! Take care Seff and thank you again for your comment... Link to comment Share on other sites More sharing options...
Steff Posted July 19, 2018 Share Posted July 19, 2018 Anytime, I can offer some hope when you need, I definitely will. I understand your fear and stress...I am an only child too and my mom is the caregiver for my disabled father. But even through all of this we still make it. You and your mom will too. BTW, the concert photo was taken when my mom was actively on chemo and Keytruda. Her face was round because she was finishing up a stint of steroids, but as you can see, she's happy and loving life. You will get through this. Link to comment Share on other sites More sharing options...
LOVEMAMA Posted July 19, 2018 Author Share Posted July 19, 2018 Thank you Steff. Hope our mother could get through this. LIFE is short but beautiful! Link to comment Share on other sites More sharing options...
Roz Posted July 24, 2018 Share Posted July 24, 2018 Hi, So sorry to hear about your mother's diagnosis. She is lucky to have you there to support her.I found that my daughter was my greatest source of support and she came with to all of my appointments. My son was supportive as well but as he lives out of the state, couldn't come with to appointments. I was diagnosed in Aug. 2017 and had two surgeries, Sept and Oct 17. They call it stage 4 and I did some chemo from Jan thru end of Feb. I have CT scans every three months and there is NED. Continue to believe and know there are lots of us out here that are moving forward with our lives in the face of lung cancer. These forums have such wonderful and supportive people so that if you have any questions, don't be afraid to ask. Sending you and your mom tons of positive energy!! Ro Link to comment Share on other sites More sharing options...
LOVEMAMA Posted July 24, 2018 Author Share Posted July 24, 2018 58 minutes ago, Roz said: Hi, So sorry to hear about your mother's diagnosis. She is lucky to have you there to support her.I found that my daughter was my greatest source of support and she came with to all of my appointments. My son was supportive as well but as he lives out of the state, couldn't come with to appointments. I was diagnosed in Aug. 2017 and had two surgeries, Sept and Oct 17. They call it stage 4 and I did some chemo from Jan thru end of Feb. I have CT scans every three months and there is NED. Continue to believe and know there are lots of us out here that are moving forward with our lives in the face of lung cancer. These forums have such wonderful and supportive people so that if you have any questions, don't be afraid to ask. Sending you and your mom tons of positive energy!! Ro Thank you so much Roz, we will go to see he Dr tomorrow for the blood test and will start the IMMUNE PD1 Keytruda on Friday. Hope we all get good response Link to comment Share on other sites More sharing options...
Mally Posted July 25, 2018 Share Posted July 25, 2018 Hi Lovemuma. Sorry to hear about your mum and we all know about the earthquake feeling but we also know how things can settle down once we get treatment started...I had surgery Jan last year and was stage 3A and followed up with 4 rounds of chemo which worked for 6 months and then some lymph nodes were seen to be enlarged in my chest on the next scan and largest measured 26mm so I'm currently on opdivo which is an immunotherepy and today I got the results of my latest scan showing it's only 2mm so I'm hoping next scan that it cant be seen at all so you have a good reason to be hopeful with the new treatments available today ... Link to comment Share on other sites More sharing options...
LOVEMAMA Posted July 25, 2018 Author Share Posted July 25, 2018 2 hours ago, Mally said: Hi Lovemuma. Sorry to hear about your mum and we all know about the earthquake feeling but we also know how things can settle down once we get treatment started...I had surgery Jan last year and was stage 3A and followed up with 4 rounds of chemo which worked for 6 months and then some lymph nodes were seen to be enlarged in my chest on the next scan and largest measured 26mm so I'm currently on opdivo which is an immunotherepy and today I got the results of my latest scan showing it's only 2mm so I'm hoping next scan that it cant be seen at all so you have a good reason to be hopeful with the new treatments available today ... That's great news Mally, so happy for you. Hope Keytuda could work for my mother too. We will go to see the doctor tomorrow for the 2nd CT scan report after the 4th chemo. Friday we will start to use the Keytuda immunotherepy.. Link to comment Share on other sites More sharing options...
Mally Posted July 26, 2018 Share Posted July 26, 2018 I wish your mum the very best and keep positive that keytruda will do its magic ... Link to comment Share on other sites More sharing options...
LOVEMAMA Posted July 27, 2018 Author Share Posted July 27, 2018 On 7/25/2018 at 9:55 PM, Mally said: I wish your mum the very best and keep positive that keytruda will do its magic ... Thank you very much Mally. Link to comment Share on other sites More sharing options...
LOVEMAMA Posted July 27, 2018 Author Share Posted July 27, 2018 Met Dr yesterday, this is the CT update after 4th chemo: revisualization of a left hilar mass, resulting in significant narrowing of the upper lobe pulmonary artery and its segmental branches, there is also mild narrowing of the main left and the left lower lobe pulmonary arteries, but this is has significantly improved since the CT in April 2018. The mass encases the left main bronchus resulting in very mild narrowing. it also encases the left upper lobe bronchus with its segmental branches, resulting in obstructing of some of the segmental and sub segmental branches, unchanged, there is further volume loss of the left upper lobe since the previous examination, the mass is difficult to measure due to its irregular shape, but may have slightly enlarged since the examination in May. The main left hilar mass seems to have enlarge since the previous examination. Ne pulmonary nodules are seen in the left upper lobe. The rest of the numerous pulmonary nodules have mostly remained stable, although a few has slightly enlarged the interval. Mediastina lymph ns have some remained stable and some enlarged in interval. Metastatic hepatic lesions have some remained stable and some enlarged. Metastatic disease to the bones has progressed in the interval. Pathologic fractures visualized in the left iliac bone and around posterior arch the left 3rd rib. Will start the 1st treatment of the Keytura this afternoon at 3:00PM. I am worried about the bones and Pathologic fractures.... what we could do on that? Link to comment Share on other sites More sharing options...
Judy M. Posted July 27, 2018 Share Posted July 27, 2018 LOVEMAMA I also have bone mets and will share what little I know. Had a procedure called Ablation and Cementoplasty on a met in my hip. Basically, they drilled into the tumor and placed electrodes and used heat to try to destroy the tumor then injected bone cement (a substance even stronger than bone) into my hip to strengthen it. I'm seeing an Orthopedic Surgeon next week to deal with 2 more mets that showed up on most recent scan. These are also in my left leg. So, I'm thinking some sort of surgery will be done to remove those and strengthen my bone. Also, is your mom in pain? My bone mets have caused me a lot of pain, but this isn't always true for everyone. If so, radiation can help with the pain. Just throwing out a few options you might want to check into. Judy M. Link to comment Share on other sites More sharing options...
LOVEMAMA Posted July 27, 2018 Author Share Posted July 27, 2018 32 minutes ago, Judy M. said: LOVEMAMA I also have bone mets and will share what little I know. Had a procedure called Ablation and Cementoplasty on a met in my hip. Basically, they drilled into the tumor and placed electrodes and used heat to try to destroy the tumor then injected bone cement (a substance even stronger than bone) into my hip to strengthen it. I'm seeing an Orthopedic Surgeon next week to deal with 2 more mets that showed up on most recent scan. These are also in my left leg. So, I'm thinking some sort of surgery will be done to remove those and strengthen my bone. Also, is your mom in pain? My bone mets have caused me a lot of pain, but this isn't always true for everyone. If so, radiation can help with the pain. Just throwing out a few options you might want to check into. Judy M. Thank you very much Judy, My mother feels pain on her left back sometimes, (I think it is the the left 3rd rib). Not pain for the rest of the body yet.... The doctor ask the same question about the pain and he said will do the PD1 treatment first to see the response, if the pain raise, he will give some medicine base on it. I am really shocked yesterday when I saw the result of the CT which shown Pathologic fractures visualized in the left iliac bone and around posterior arch the left 3rd rib.... I feels 10 times hurt than my mother to my heart.... feels very bad..... I will go to hospital now with my mother and father to do the first treatment of PD1.... Thanks again Link to comment Share on other sites More sharing options...
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