My mother was diagnosed with Stage 4 NSCLC a month ago.
We finally got biomarker testing back indicating she is EGFR+ which makes her eligible for targeted therapy and doesn't need chemo. YAY. Great news, she just has to take a pill a day. At the same time, she's become unable to swallow (both liquids and solids). We found out both vocal cords have become paralyzed, and her airway is at risk of closing. She's been hospitalized. The doctors are unsure what is causing this since they don't normally see this with lung cancer patients. We were told she probably can't start targeted therapy since she can't swallow the pill.
It feels like life's playing a cruel joke on us. Giving us a slight glimpse of hope, only to immediately take it away and put her in a much worse position.
I'm struggling so much. I feel like every bad news is like a wave that knocks me off my feet. Just as I deal with that and try to remain strong for my mother, another wave comes and knocks me back down. I'm exhausted and just want her to get better, but I know that's all minuscule compared to what she must be feeling. Seeing her in pain hurts so much.
I wish our doctors made it all easier, instead of feeling like another source of stress. Our doctor initially dismissed my mom's symptoms and accused us of being alarmist before she was hospitalized.
Sorry for the long rant, I'm sure this group has their share of worries. Somehow, I feel like talking about this to people who understand makes it all feel a bit more normal.
@ellep I'm so very sorry for what you are going through with your mom. I'm no doctor thats forsure, but I have been reading on line that airway blockages is a thing with some lung cancer patients. It can be treated with various things like a stent in the airway passage, or radiation or other treatmens depending on the blockage.. and the vocal coards can be affected if cancer gets into the laryngeal nerve. I would try to get a second opinion. Are there more tests getting done? Someone who can dig farther into this to find out the extent of the blockage and what treatment needs to get done asap. The cancer information line should be able to answer more questions about this situation as they have much more knowledge than I do. 1888 939 3333. I know that when my fiance was going through radiation treatment, it was the effects of tbe radiation that shrunk his passageway so small that he could no longer eat or swallow water. He was treated with a stent. The vocal cords were also treated by a specialist at st. Mikes hospital. There are things that can be done . I pray you get to tbe bottom of why this is happening and a solution is found soon. Keep pressing the health care team to be proactive about this. They need to figure it out, or consult with their team to find an acceptable solution. I know it's hard to see someone you love in pain. My heart goes out to you. I hope others on here may have suggestions too or similar experiences with this they can talk to you about, and what solution they came up with to deal with this. We will do our upmost to help you.
@ellep Hello….I am sorry, to hear of the diagnosis, and difficulties, your mom is facing.
Good news/Bad news……here is “another way” to look at things…..
PIVOT !! Truly, each and every day….be ready to PIVOT!! (change direction)….it is not that “bad” news follows the good news…..it IS that we must “change the direction”…..I would always TRY to focus LIGHTLY on the “news”…..grasp it; hold on to it; but “know”, that the “wind, may change things, a tad !”
Also; “expect” the “unexpected”….this way, the “bad” news, is really par for the course…..overall……some days are good; some less than that.
Of course it is hard, to see your mom…..it is challenging on the entire family……As was mentioned earlier….please reach out to her medical team; perhaps a second opinion; advocate for her ease to swallow; can any meds be given to her in an IV form? (What about eating/drinking? how is she doing?)
Just be “being there”, with her……is wonderful, giving and loving…
We are all here, to support you both.
@ellep cancer is such a roller coaster ride and none of it is fun! My mom had some voice issues with her lung cancer. She ended up getting injections into one chord to help it work properly. When I did some googling, I learned there is a nerve around the lungs that can impact the vocal chords. I’m not a doctor though! I hope your mom’s team can figure out a solution quickly.
I don’t know that there’s an easier way for you to navigate through this. You are there, trying to help your mom, and that’s all you can do. Support her as best you can and love her up. And take a bit of time for you, a walk or some time to just breathe.
Please rant away here, never feel guilty or think that your issues aren’t worthy. They are!
hugs from Sask,
I gave myself an hour or so to cry, and another few hours to process, and the next day, I was back on the case while still at the conference, making phone calls to the new and old members of his medical team to try and get the logistics in order for when he started back into treatment two days after my return home.
Do allow yourself the opportunity to process all of this information the best you can. That’s important. Then ask about options for your mom. My dad was also NSCLC, and treatments are constantly evolving - targeted therapy wasn’t an option for him 4 years ago.