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Melanoma (internal): What questions should we ask the oncologist?
Melanoma & Skin Cancer | Last Active: Jan 10 8:20pm | Replies (23)Comment receiving replies
@grammato3
I just found this site and I have hopes of finding some answers of my own.
I have been on keytruda since April 2021. I believe I have had 77 infusions. I had stage 3 Melanoma on my upper arm around 2014-15. I had surgery and lymph nodes removed and was told no more cancer.
In 2021 it metastasized to my lung and was inoperable.
I started keytruda in April. Since I have asthma I had to stop my every 8 week injection fasenra because keytruda doesn't mix well with it.
I am presently in remission but am told I have to stay on the treatment for life. I dont mind that except for 2 things.
1. I have zero energy. Some days my legs don't want to move.
2. As long as I am sitting I feel healthy and don't look sick. When I get up and walk 10 ft or more I suddenly can't breath. (Not like asthma either). Gasping and wondering if I am taking my last breath. The more I move around it gets worse. I get to my nebulizer and do a breathing treatment until I feel myself calm down. The treatment only lasts until I get up and move around so in actuality it only rescues me.
Mentally it is wearing me down. My oncologist, pulmonary doctor, heart doctor don't seem concerned.
My vitals at the doctor's are always normal because I am sitting waiting for them to come in.
When I am like this at home my oxygen level is 84, 85, 86 with heart rate anywhere from 105 to 120.
After I sit it goes up to 95,96,97.
I dont know what else to do to help my quality of life. I can't go anywhere because of it so I stay home.
Keytruda is a miracle drug and it saved my life. Between covid and keytruda though it has damaged my heart too.
I have talked to many patients on keytruda at the cancer center and none of them have these symptoms.
I would love to hear from anyone on keytruda. Thank you for hanging with me.
Replies to "@grammato3 I just found this site and I have hopes of finding some answers of my..."
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@songinmyheart54: welcome to Mayo Clinic Connect. Since I wrote that post in November of 2024, I have become actively involved in this forum becoming one of the mentors who assists with fielding questions such as yours. Additionally, as a patient I had a successful initial course of Keytruda as my solitary metastatic lung nodule resolved within the first three months of treatment. Due to other issues, which I’ll detail in a later post, I’ve since had to discontinue immunotherapy earlier than anticipated.
Keytruda affects people differently and it can cause a variety of adverse reactions. I’m not certain I understand your treatment plan correctly as I’m unfamiliar with remaining on Keytruda beyond two years. If you are staying on it indefinitely, have you discussed the rationale for this? Do any of the providers oversee your home monitoring results?
As you noted, vital signs such as heart and respiratory rate as well as oxygen saturation change with activity. If you’re noticing a decline in your breathing, additional testing could be performed to assess this.
It sounds like you’ve attempted to discuss these concerns with the providers with whom you’ve been treating. Can you tell me if they’ve tried or suggested any interventions to assess the changes as you’ve described? For example, have you had pulmonary function tests or cardiopulmonary exercise testing?