LizG

Hi everyone, Since I last was active in the forum my mom (Stage IV Adenocarcinoma, diagnosed 9/14) has had a severe decline in her mobility and regularly needs to use a wheelchair. She has been experiencing a host of digestive side effects from her pain medication which have left her pretty frequently unable to eat. The weakness this causes is the main contribution to her overall mobility problems. Mom is no longer able to navigate the stairs safely, so to take her to appointments and treatment we have to carry her down the stairs to the driveway to get her to the car. I am trying to find a way to have a wheelchair ramp installed at the house so that she can come in and out safely, especially as winter fast approaches. Right now the lowest quote is $4000... and can't be covered by insurance. Does anyone have a recommendation of where to find resources to help with the cost?

My mom is also taking Opdivo, she had her second round today. She is also experiencing the baseline lack of appetite, fatigue, weakness, and also really severe constipation. Has anyone else had to deal with bowel issues while in treatment?

Hi everyone, My mom is in treatment for Stage IV NSCLC. She originally received Pemetrexed and Avastin but she became neutropenic and was put on chemo vacation for a bit. While she was on break from treatment her kidneys weren't functioning well and her blood pressure was very (uncharacteristically) high. We went to a kidney specialist who could see that the chemo had caused high blood pressure which in turn damaged her kidneys, and she was prescribed BP medication which was working well. Her BP normalized and her kidneys improved, as did her overall health. Due to its negative effect on the kidneys, her kidney specialist and oncologist decided to drop the Pemetrexed and continue her chemotherapy with Avastin only, since she previously tolerated it well and has had 2 scans showing no new cancer and shrinking in all her other tumors (yay). She is now two rounds deep into her Avastin-only treatment and has begun experiencing severe headaches. Her blood pressure had elevated and the doctors increased her BP medication in response, but her typical pain regimen has been ineffective. She uses a Fentanyl patch for day-to-day pain management due to bone mets and Oxycodone and Tylenol for breakthrough pain. She is having no success controlling the headache with the Oxy/Tylenol. It doesn't appear that the headaches are being caused by BP because that is now under control, and her recent MRI has been clear of any new growth or swelling in her brain. Can Avastin be causing her headaches? If anyone else has experienced this, have you found treatment that helps? She had headaches like this before when she first started chemo and we were unsuccessful in finding a solution... the headaches eventually improved before the doctors could determine the cause. Any help is very appreciated! Liz

Hi orange_krush, My mom was diagnosed 6 months ago with NSCLC which also metastasized to her bones, leaving her with small fractures in her hip. I live 4 hours away from her so I understand how you feel. I have learned to go with my gut. My initial reaction was that I needed to move home and be with my mom to help manage her care, but ultimately I haven't done that yet. I try to visit as much as I can and do the same- lend an ear and give love and support. For me the hardest part is wanting to be able to make things better but knowing there's not much I can do. I've always been really close with my mom and we used to talk everyday, but now that she's sick and tired from chemo she isn't up for calls a lot. I have been added as someone who the doctors can share information with and since I'm not home to help physically I try to keep up with the doctors when I can and research the medicines she is on to help her know what to expect from the side effects and look for things that will help with nausea and pain. That helps me feel a little more in control and helpful, and it's also helped me to learn more about her disease and the expectations. I'm really sorry you are going through the same thing I am but I hope it helps to know you aren't alone. I'm thinking of you. Liz

Thanks so much Katie, this is very helpful!

Hi everyone, I am hoping for some advice/insights on good ways to talk to potential employers about FMLA as a caregiver. I have been working as a contracting consultant since before my mom became ill but today found out that my current contract will be terminated at the end of the month (not unusual for my line of work but not awesome timing). I will be looking for new employment at the end of the month. My current employer was understanding and flexible with time as I travel to help my mom once a month, and I was able to work odd hours on days I accompanied her to chemo or dr appointments and on days when extra help around the house was needed. I am worried about finding a job now where I can continue to be able to be with my mom like that. Do you have advice on whether I should broach this topic during interviews (like at what point) and what is the best way to approach it? I'm not really educated in FMLA and since I often contract that's not really an option in some jobs. Any help would be greatly appreciated! Liz

Thanks Katie! The Foundation One test is different because it's not specific to lung cancer and its results can be useful if standard treatment protocols are unsuccessful. It was recommended by our friend because of an acute but widely varied history of cancer in the family. Both of my mom's parents died from different forms of cancer and many of her cousins, aunts, and uncles were also afflicted.

Merry Christmas, Donna. I hope it was a peaceful day

Hi everyone, I posted this in 'Ask the Experts' but want to repost here in case anyone else has experience or advice! Thank you and I hope I'm not spamming or violating rules. Merry Christmas! My mom is currently receiving Chemotherapy every 21 days (Pematrexed/Avastin/Carboplatin). She is 16 days out from her last treatment and has noticed red dots on her legs. From what I've researched it looks like she's exhibiting symptoms of anemia. She has also been very tired which has been normal at this point after treatment, but now I'm concerned that it is connected. How normal is anemia while a patient is in chemo and is it ok to wait for her bloodwork planned on Monday (4 days from now) to talk to the doctor or should we be on high alert?

A person close to my immediate family is a Chemotherapy Nurse and works with some of the leading oncologists in the area where my mother is receiving treatments for Stage VI NSCLC (Adenocarcinoma). She has been a proponent of having my mom undergo Foundation One genetic testing to see if it will provide any insights to her cancer and help determine better treatment protocols. This test is expensive (around $5000) and rarely covered by health insurance, including my mom's plan, without petitioning. The doctors have said that this test should wait until they determine the success of the chemo and see whether more exploration is necessary, but by no means require it. Has anyone here had experience with Foundation One testing? I am trying to weigh its merits and learn more about the information it provides and whether it is worth the cost in helping my mom's cancer at this stage.

Thanks for the responses! We did have the test run for EGFR mutation and that was negative. There's another genetic test that can be run but it's really expensive and not covered by insurance and at this point the doctors have recommended revisiting that test if chemo is not effective. My mom was originally in a clinical trial but was unable to tolerate one of the meds which I've since researched a lot about and found that it's commonly very reactive and can lead to cardiac arrest. Luckily we didn't experience that, but it did cause my mom a great deal of pain and was scary to see. She's currently on a standard protocol chemo regimen and I am looking into other options as well should this not be effective. I will be checking out other threads and posting as I can, thank you all for sharing your stories! It's really nice to not be alone Liz

Hello, I am Liz and I've recently been approved to participate in Lungevity forums. I am 28 years old and my mom was recently diagnosed with stage 4 NSCLC. She is currently in chemotherapy and has also had radiation and another non-surgical procedure to help with some of her mets. I come from a large family and have several younger siblings, including two teenagers who live at home with my parents. This has been a rough few months for all of us. I am a part-time caretaker and full time cheerleader for my mom. I travel from where I live to stay with her 1-2 weeks each month. I am very much in need of people to talk to and share experiences with. I want to learn as much as I can about treatments and palliative care that can help my mom have the best quality of life possible, and I also need some help myself. I find it difficult to talk to my siblings or dad openly about my feelings and fears and hope that I can make some friends and find support here. I also want to learn how to be a better caretaker and an ally for my mom. I'm happy to become part your community and look forward to learning and growing with you all, and becoming a better advocate for lung cancer patients and a friend. Liz