Christine808 Posted November 21, 2015 Share Posted November 21, 2015 I'm Christine this is the beginning of our journey with Dad, who called me distraught after being seen for what he assumed was bronchitis. He was informed by the on call Doctor that he had lung cancer and had a six month prognosis. I was heartbroken for him and infuriated with the unprofessional and callousness of this statement for a few reasons. Firstly there was no biopsy this information was based on evaluations of X-ray images and a CT scan. Secondly, I have a very close friend that is battling NSCLC Stage IV. She is responding to treatment and I have informed myself about this disease. My sister traveled to help dad get more information and get the kind of referrals to begin conversations about treatment options. His care has been excellent so far and we are very optimistic. Here is my summary of the last two weeks. It was a great visit, ten days of loving, laughing and caring for each other, days of gratitude. I wasn't prepared to hear the raspy breathing that the fluid is causing for dad. I am thankful for his doctors and remain hopeful for him getting more quality time. It's difficult being so far away, Dad lives in Idaho and I am in Hawaii. I am already thinking of when I can go see him again. He had a biopsy, finally, yesterday, soon we will know his mutation. He is meeting with his oncologist and also with a redial oncologist. The cancer has indeed metastasized to his brain and they are recommending aggressive radiation therapy, ten days consecutively and begin chemotherapy infusions as well. We are asking if he can receive immunotherapy as well. It's going to be a very long year. We are keeping a binder of all his doctor reports and summaries up-dating as needed. Also compiling best practices for mitigating the side effects of any treatments. Included are meal plans shopping lists. balms, tips to help keep him as comfortable as possible. If any of you have recommendations for a wedge that he can use for sleeping comfort I'd appreciate that. Aloha, Chrisitne Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 22, 2015 Share Posted November 22, 2015 Christine, Great to hear about his treatment. Is the radio oncologist suggesting radiation to brain and lung mets? A wedge pillow was something I found very helpful. Try and get a "memory foam" type pillow. I'd have him audition one or several at a local mattress store, then note the name and model and contemplate purchasing online at what may be a good discount. He really needs to try before you buy because the angle varies from brand-to-brand and the angle is critical to comfort. Amazon has many wedge pillows. Search "bed wedge" but purchase after audition. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
CindyA Posted November 24, 2015 Share Posted November 24, 2015 Hi Christine, Someone asked about wedge pillows awhile back and I thought I would post that link here so you can see what some of posted. http://forums.lungevity.org/index.php?/topic/43182-pillows-for-easier-breathing-at-night/?hl=wedge Best, Cindy Quote Link to comment Share on other sites More sharing options...
andylewis Posted November 26, 2015 Share Posted November 26, 2015 My sister uses wedge pillow, Gravity can work against you when you lie on your back in the supine position. It may collapse your upper airway or lungs as the weight of your neck and abdomen shift. This may lead to interruption in breathing during sleep called apnea. This really helpful. Quote Link to comment Share on other sites More sharing options...
Christine808 Posted November 26, 2015 Author Share Posted November 26, 2015 Thanks for the suggestions. Dad's referrals to his new care team closer to home is going very well. He is ver happy with his new Doctors. He is ready to begin radiation therapy next week, following with Chemo therapy. Happy Thanksgiving, there is so much to be thankful for this community, research, hope and grace. Aloha, Chrisitne Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 27, 2015 Share Posted November 27, 2015 Christine, Good news! Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Christine808 Posted November 27, 2015 Author Share Posted November 27, 2015 Tom, Yes, the radio oncologist recommending that the sites in his lung, brain, and bone be radiated. He got the tattoos Wednesday and will begin therapy on Monday. I relayed your recommendations for, test driving the wedge pillow. He had started shopping on Amazon, so he was very thankful for this good advice. The best part of our conversation yesterday, was heading how positive he is about the pl.an for treatment, that his team believes that his cancer it treatable and he will have more quality time. With that said he told me of his plans for the future which include getting his Idaho camping permit, because there are trips he wants to take and things he wants to see. I'm so grateful for this. Aloha, Christine Cheryncp123 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 28, 2015 Share Posted November 28, 2015 Christine, Wonderful news! Have him plan a hike to Atlanta, Idaho and pan for gold! I did that in my younger years and even found some gold. Found more trout in the rivers. Hope he is a fly-fisherman; the fishing in Idaho is superb! If he's getting a permit he is likely heading to the Sawtooth Forrest Wilderness area. I'd be doing some online searching and find him links about panning for gold and wildlife in the Sawtooth. That would amp his interest level for the vacation and give him something productive to do while he's in treatment. Stay the course. Tom Christine808 and CindyA 2 Quote Link to comment Share on other sites More sharing options...
Christine808 Posted December 4, 2015 Author Share Posted December 4, 2015 Dad is finishing up week one radio therapy we hear from him each day and he is feeling a bit fatigued, and some throat dryness. He has support of great friends that are driving him to appointments. This is such a gift to all of us as he is not supposed to drive. Having him live in a rural area was a concern. Our fears have been lifted. Aloha and Thanks for listening, Christine Quote Link to comment Share on other sites More sharing options...
Christine808 Posted December 19, 2015 Author Share Posted December 19, 2015 Aloha, Dad's mutation was identified and as he is EFGR+ he began Terceva two days ago. His spirits remain high and we are learning to cope with this new normal. Hope the Holidays are good to all! -Christine Cheryncp123 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted December 22, 2015 Share Posted December 22, 2015 Christine, Glad the mutation was identified. I took Tarceva before they had genetic marker testing. For about 15 to 20-percent of those on Tarceva, outcomes were fantastic. But for the remainder, including me, it didn't work. But now they know why and it is the EFGR mutation that Tarceva targets. So this could be wonderful news! Here's to hoping he has a wonderful outcome during a joyous part of the year! Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Christine808 Posted January 6, 2016 Author Share Posted January 6, 2016 We have had a few bumps in the road since dad started the Tarceva. He was treated at the E.R. for dehydration on Dec. 27. I have traveled to Idaho again to care for him. He is not receiving the kind of care that is needed and this is mostly due to the fact that my Stepmother has Alzheimer’s. This has been a concern from the beginning, what occurred was my worst fear and yet, I wanted to respect the boundaries of their relationship and independence and monitor the situation. When I arrived he was in poor condition being weakened from the radiation and some side affects of Tarceva. He was not wanting to eat and not being offered nutritionally sound foods. I have been here a week now and he has made great strides. I implemented a meal plan that accounts for his poor appetite getting him better food more frequently is helping immensely. I have taken him to the Cancer Center twice now and the team there is amazing. I hold such gratitude for their compassion and care. My sister will relieve me and then my stepsister will arrive to get more direct care for her mother. We continue to keep our hopes high and work well together. Our family is incredibly blessed! I have a few little battles with Dad and his big man ego. 1) He refused to utilize a riding cart when going to the market. However, yesterday he was so courageous and put his pride aside and got on with what needed to be done. He owned that cart! 2) Purchased a Wedge pillow to assist with better sleep and he won’t use that, yet. Suggestions? 3) He finally agreed to get a mentor and that is huge I just hope he utilized the wealth of knowledge. 4) He wants to “come-out” on social media and told me he doesn’t know how. Suggestions? Thanks all and many blessing to you! Cheryncp123 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted January 6, 2016 Share Posted January 6, 2016 Christine, Keep suggesting. I've found that a woman's repetition is far more powerful than a man's ego. Persist but avoid insisting. He'll eventually see the light. As to #4, I don't have a clue. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
lsaut Posted January 7, 2016 Share Posted January 7, 2016 Christine - it sounds like your dad is very fortunate to have you visiting. Keep the pillow near by and maybe he'll eventually give in - just like with the market? For social media - how about a poster with a brief overview of whatever he is comfortable disclosing. This page has some great ideas... I love the ones about taking it one day at a time. All my best, Lianne Cheryncp123 1 Quote Link to comment Share on other sites More sharing options...
Christine808 Posted January 23, 2016 Author Share Posted January 23, 2016 An up-date is in order. We have decided over some long and heartfelt conversations that at this time it is best that I go to care for my father in Idaho long term. It is evident that he needs more direct care and ongoing support, this no longer feasible with intermittent stays with inconsistency in providers. We have all rallied to do this in the best way we could at the time. This means I will live at Dad’s place and my own family will have to carry on without me. I have an incredibly wonderful husband and two teenage daughters. This will be a great test for all of us, yet we agree that it is necessary. We are all willing to do what is necessary even if it’s not our first choice option. Along this uncertain path we will keep close, open communication and re-evaluate as needed. Dad has suffered a couple of setbacks with the Tarceva; GI distress and nausea, primarily. At his last doctor visit he had lost another ten pounds and was ordered to cease Tarvceva for a two-week period. His oncologist hopes to achieve restoration of his appetite and relief of the GI issues while re-gaining some weight. When he is seen again they will evaluate if he will go back onto Tarceva. He did get the bed elevated to an incline, Yay! I found a great resource for revealing cancer on social media. My great dear friend sent this along, http://www.fredhutch.org/en/news/center-news/2016/01/coming-out-with-cancer-disclosing-diagnosis.html I’m immensely grateful for my family and the closeness we share for their unwavering support and for the community here; your expertise and empathy are a great comfort. Cheryncp123 1 Quote Link to comment Share on other sites More sharing options...
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