adv_sports Posted February 28, 2017 Share Posted February 28, 2017 Good day! I am glad to find this forum -- so many inspirational survivors and helpful people! My mum was diagnosed with Stage VI NSCLC in Sep 2014 -- cancer had spread to her liver and bone. She took Tarceva for 9 months and INC280+EGF816 (clinical trial) for 15 months till tumors stopoed responding to oral chemo drug. My mum is 71 years old and recently started to experience numbness in her legs, constipation and nausea/vomitting. She is feeling frustrated with her lost in mobility - unable to lift up her legs and need help/support to walk. My siblings and I are trying our best to make her comfortable. We are meeting her oncologist this Thursday to review her biopsy/molecular test results and discuss her next course of treatment -- likely chemotherapy. We are fearful that chemotherapy may further weaken her... Quote Link to comment Share on other sites More sharing options...
LaurenH Posted February 28, 2017 Share Posted February 28, 2017 Hello, adv_sports! Welcome to LCSC. We are glad that you found us. I am sorry to hear about your mom's current health issues. This is a great site to connect with others who have gone through similar situations. I hope you get some answers from the biopsy/molecular test results on Thursday. If you're comfortable sharing the results, some of our members may be able to offer advice and answer some of your questions. It sounds like your mother is very fortunate to have you and your siblings to take care of her. Please feel free to ask questions and join in any of the conversations on this discussion board. If you need information/resources on a specific topic, please let me know and I'll be happy to help. With gratitude, Lauren -- Digital Community Manger LUNGevity Foundation Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 28, 2017 Share Posted February 28, 2017 adv_sports, Your mother and family are veterans concerning lung cancer based upon your description of your mother's treatment history. Unfortunately, as I am learning myself, age and residual side-effects often complicate the process of diagnosis. I have peripheral neuropathy as a lasting side-effect from chemotherapy and sometimes other problems like a recent bout of pneumonia increase my numbness and ability to walk. So, your mother's doctors will need to sort out her symptoms and the new pathology information to determine a new treatment plan. Chemotherapy is sometimes difficult but advancements in side-effect control and changes in drugs have made it easier to tolerate. Be sure you have someone accompany your mother at the Thursday session to ensure you completely understand her problems and potential treatments. You'll likely have more questions and are most welcome to ask them here. Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted March 1, 2017 Share Posted March 1, 2017 Hello! Do you have access to a palliative care doctor. I hope you know that palliative care is NOT the same as hospice. Palliative care works to help a person deal with pain, debility and other effects of either the illness or the treatment. A person can get palliative care whether or not they are taking treatment aimed at a cure. Your mom sounds like she might be a good candidate for this. It's good she has her children to support her. Best wishes to all of you. Please let us know what you find out. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
adv_sports Posted March 2, 2017 Author Share Posted March 2, 2017 Lauren, I hope to share inspirational stories from here with my mum - so that she will fight on. Tom, we still have so much to learn - how to manage our fear/anxiety when tumor stopped responding to oral chemo drug. We are in for a long roller coaster ride! BridgetO, the oncologist has been prescribing medicine to counter possible side effects. I will check with him on palliative care when we discuss the treatment plan. Update : We met with the oncologist today - we always ensure at least two of us accompany my mum. He said molecular test didn't find mutation - still EGFR. However, he was concerned about the numbness in my mum's legs and ordered an immediate MRI - suspect something pressing on her spine. My mum is currently warded in the hospital. We will discuss the treatment plan after receiving MRI report. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 2, 2017 Share Posted March 2, 2017 adv_sport, It is likely a good thing she is hospitalized and a tumor in or interfering with spinal chord could indeed cause numbness and difficulty walking. Let us know the MRI results and tell your mom thousands of folks are wishing her well. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
adv_sports Posted March 8, 2017 Author Share Posted March 8, 2017 Tom, it warmed my heart when you said " thousands of folks are wishing her well" Thanks! Update : My mum's MRI results showed that the cancer has spread -- there is a small tumor in her brain and many tumors on her spinal cord which is causing the numbness in her legs. Her oncologist proposed to start her on afatinib 40mg to see if the numbness will go away. If not, the next option is radiation therapy. We are bracing ourselves for the worst but my mum is taking the news with positive attitude. After she started taking afatinib, her nausea/vomiting is gone - now she has good appetite (craving for her favorite food). We will meet with her oncologist next Thursday to review her condition -- hope to see some improvement! Wising all a Happy Mid Week! Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 8, 2017 Share Posted March 8, 2017 adv_sports, Afatinib is a new targeted therapy for adenocarcinoma that displays a genetic marker for epidermal growth factor receptor -- EGFR. I has produced remarkable results in a lot of folks. You mom's doctor may further decide to use radiation therapy in addition to Afatinib to relieve the tumor pressure on her spinal chord and address the tumor in her brain. So that treatment may be on the horizon. Glad her appetite has returned. That is always a good sign. Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
adv_sports Posted April 7, 2017 Author Share Posted April 7, 2017 Tom, sad to say, afatinib does not seem to work for my mum Update : After taking 2 weeks of afatinib, the numbness on my mum's legs are not showing any improvement. So she started a 10-day radiation therapy for two weeks to address the tumors on her spinal cord (stopped taking afatinib for the time being). Side effects during radiation therapy were loss of appetite and nauseous. She resumed taking afatinib after completing radiation therapy last Friday. But she started to have diarrhea -- last Sunday for 5 times and last night for 13 times. In her haste to go to the toilet due to diarrhea, she fell from the bed twice *GOSH*. Now my family are very worried about her going to toilet in the night... This morning, we met with her radiation oncologist to review her conditions -- he increased dosage for anti-diarrhea medication to double and 3x a day. Hope she will feel better soon. Anyone can share the side effects of radiation therapy? How long will the side effects last? Next week, we have to discuss with her regular oncologist to decide her next course of treatment... Anyone tried the combination of afatinib with cetuximab? Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted April 7, 2017 Share Posted April 7, 2017 adv_sports, Unfortunately, diarrhea is a common side effect of afatinib but your mother's complexity of numbness in her legs and falling is very sad indeed. If I understand you correctly, she's not taking afatinib while undergoing radiation therapy. Radiation side effects vary from person to person. My radiation was to a large tumor in my chest and I experienced a dry cough and skin burn (sunburn like) but most troubling was fatigue. As my daily doses progressed, I felt less and less energy and did a lot of sleeping. Fortunately, I recovered quickly after the treatment finished and my treatment was successful, it shrank my tumor. Hopefully, the radiation will ease the numbness in your mother's legs. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
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