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What questions should I ask the oncologist about low oxygen levels?
My 88 year old mom was diagnosed 20 months ago with stage IV Adenocarcinoma. There were a couple small spots on one lung and a pleural effusion. No other spread. She has been doing ok except for her appetite and she has lost 60 pounds. Apparently she was not a candidate for chemo, only Keytruda immunotherapy every 3 weeks. Wednesday she had her infusion, took a nap, and woke up gasping for air. She went to the ER, labs were good, they did a thoracentesis and sent her home. Before being sent home her oxygen sat level was 86. She has not needed home oxygen, so the ER ordered it to be delivered on Thursday. We were surprised that they sent her home with low oxygen and did not give us a home oxygen tank for Wednesday night.
Since Wednesday night her oxygen has been fluctuating. Since we received the home oxygen, while sitting, with the machine at 2.5, her oxygen reads between 89 and 93. When she gets up, it quickly drops to the mid to low 80s. We’ve been advised to turn the machine up to 3 or 4 when she gets up. No one has told us that this is her new normal, they just tell us if it stays in the 80s to go the ER.
Does anyone have experience with this? Does this signal the end is near or warrant further testing? I’m have posted here before that Mom likes to present a pretty picture when talking with doctors. She had a phone appointment with her primary care doctor yesterday, told her that while sitting her oxygen is 91, that she feels good. When she gets off the phone she is anxious, checking her levels constantly, panics when she gets up and has to gasp for air. It is very frustrating to say the least. As her caregiver I don’t know how to help. She gets angry if I ask the doctors questions. I just am at a loss in trying to help her.
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@environmom, I'm so sorry to hear about your struggles with your mother. My wife and I debate about which role is harder: having Stage IV lung cancer (me) or living with someone who has Stage IV lung cancer (her). Being the caregiver is definitely a challenging role.
I'm always advocating for going with an older person when they go to the doctor. I did it with my parents and insisted my brothers did the same when I was out of town. Let her doctor(s) know about her anger issue and ask that they interact with her before turning to you and asking if you have any questions. That way, it's not you that's initiating the exchange. Let your mother know how hard this is for you and that you just want to be sure she's getting the best treatment.
I'm not that kind of doctor, so I can't address your medical questions. That's for the professionals to decide. When was her last CT or PET scan? Blood test? Is she being tested regularly? Lastly, have you gotten a second opinion? Even if you like her current doctor, he or she will fully support getting a second opinion.
I wish the best for you and your mom. There is a lot of support in this group, so keep letting us know how things are going.
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2 Reactions@environmom, What a tough position to be in. There is a Mayo Connect Caregivers group too, I'm not sure if you've found that: https://connect.mayoclinic.org/group/caregivers/.
Has her oncologist provided any input on the weight loss? Is that possibly related to the Keytruda, and not a cancer recurrence? Does she still get periodic scans?
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3 ReactionsSorry about your mother. It is hard when people who need help object to help.
I am 82 and have falling oxygen levels with exertion. I am on 2L continuous flow oxygen for exercise and for night sleep. I need to stay in the "safe" zone (90+ minimum). I don't need oxygen when sitting (I am at 95-98). I have lung cancer, pulmonary fibrosis and pulmonary hypertension....all considered possible causes. for my SOB.
I have learned that one needs the right Specialist with the right focus to get the right answer. I don't believe the Oncologist can answer your questions on oxygen needs ...as my Oncologist said to me, she is not a Pulmonologist. You don't mention a Pulmonologist and they can run and interpret the usual pulmonary function tests (which are not invasive), also you may need a Cardiologist
When was her last CT? Is she retaining water? There are so many things that could cause this. She should probably have an appointment with her pulmonologist. It could also be heart or vascular related.
Yes, she will be mad but remind her. You do it out of love.
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1 ReactionThank you. She doesn’t have a pulmonologist or cardiologist. Her last scan was about a month ago. Oncologist doesn’t say much, mostly, “the tumor is growing slowly”. Nothing about what to expect. *Update- she is now on hospice.
Thank you, she does not have a pulmonologist or cardiologist. Last scan was about a month ago. It showed moderate growth in the right lung - left lung is clear. She is now on hospice.
Our expo with my mom's hospice team was excellent. They let us know what to expect every step of the way.
I send prayers that her landing is a gentle one.
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2 ReactionsThank you for your kind words.
Thank you. Oncologist gives very basic info - there is a small increase… that’s about it. She does get scans every 3 months. Oncologist only does phone appointments so we have never seen any images. No info on weight loss - he hasn’t even mentioned it. The nurses who give her her infusions are the only ones who mention her weight and blood pressure. It’s very frustrating, but after spending 2 days in the ER because she was anxious and couldn’t get a good breath, the Pallitive care team spoke with her about hospice. They explained much more about her condition and she signed up. She was very appreciative that they spoke with her about her condition. I am glad we are done with that oncologist.
@environmom, I'm glad to hear that you and your mother have received more information about what to expect given her condition. This is never an easy decision to make, but it's good that she could be a part of that process. I hope you are able to have some peaceful days with her. Hugs.
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