Melanoma (internal): What questions should we ask the oncologist?

Hello! It was my daughter who was diagnosed with 2 metastatic melanoma tumors back in July; a 5 cm in her left lung and a 7 cm in her left femur. Thankfully she lives near enough to John Hopkins in Baltimore that she can drive there and is being treated there. She’s had 4 immunotherapy treatments and her lung tumor has shrunk to half its original size and her tumor i. Her femur is gone. A combination of radiation and immunotherapy dissolved/destroyed it. We are overjoyed. I don’t know what Keytruda is. But find a fascility that will do immunotherapy which was developed specifically for Melanoma cancer and is the most effective against melanoma. Immunotherapy works!

@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.

@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?

@grammato3
Thank you so much for your response.
No I have not had this testing. Each doctor was blaming on the other. Heart doctor said it was pulmonary and pulmonary said it was oncology, for example.
I see my pulmonary doctor this month and I will ask about this.

@songinmyheart54: That sounds frustrating. It's commendable you're being a health advocate for yourself. Perhaps it would help to write down your primary concerns before your pulmonology appointment along with a symptom log of what and when issues ocuur - such as what activities you're doing or when your oxygen saturation declines or causes you to become out of breath, along with what helps/worsens and if you have an accompanying print-out of these results. You can prepare a list of questions such as can they please advise how to best coordinate care so an explanation might be determined for your reported occurences as you feel it's affecting your quality of life.

Your question list can be geared accordingly to the treating provider. For example, when you see the cardiologist, keep a list of those activities you're doing when you feel your heart rate increases significantly. You may inquire of your oncologist the reason for keeping you on Keytruda indefinitely and provide the symptoms you've been experiencing along with results of any testing you may have had and updated lab reports from the other providers. Be sure all the medical providers with whom you are treating have a full list of the medications you're taking on a daily and and as needed basis. Also, be prepared to take notes on what the providers tell you at the office visits as it can be overwhelming at times and some important information may be forgotten or overlooked. Inquire if there is a patient portal or print out summary of the visit you can access for future reference. This can be very helpful when dealing with multiple providers and/or when multiple conditions are being treated.

Can you circle back after your pulmonololgy visit to let me know if this information was useful, or how the visit goes?

My original question was on behalf of my daughter. She is the one who had 3 internal melanoma tumors each 6 to 7 cm in size. They are all gone now, the one in the femur was destroyed by radiation. The tumor in her abdomen was removed surgically / this is how her melanoma was discovered. What her doctor thought was a benign cyst turned out to be a melanoma tumor. The immunotherapy was intended to target the tumor in her left lung and it worked. That tumor is now a carcass without metabolic activity. Unfortunately fluid collected in the pleura of her lungs when she went off of immunotherapy but steroids appear to have successfully stopped that bothersome problem.

@marywc: thank you for providing this positive update! I’ve no doubt it was very challenging while your daughter was undergoing treatment faced with those side effects along with you helping out with the children AND having procedures of your own.

Much appreciation for opening up this thread. As you can see, it’s generated continued interest since you first posted.

Most importantly, how are you managing now? Any words of advice to share to others going through or supporting others in treatment?

@grammato3 Immunotherapy works! My daughter has been treated by oncologists at John Hopkins.

I am so sorry that this has happened to your daughter. To me it is a circumstance created by our truly horrible medical system. When diagnosed with stage 1 malignant melanoma in 2019, I was in a tailspin: cardiac issues and diabetes are what historically take my people down, not cancer.
My doctor told me in a cautioning voice that in years past, a patient like myself would receive an annual PET for just the reasons you indicate. Insurers, however, decided it was too costly (TO THEIR BOTTOM LINE) to continue this preventative diagnostic measure.

I have had many biopsies, squamous and basal cells treated, more spots frozen than I could count in the intervening years since 2019 and see the dermatologist every quarter. As a patient waiting for the other shoe to drop, I never ignore anything unusual in or on my body. I've had toenails removed at my doctor's advice because spots appeared on my nail bed under the nails. When digestive issues present, I'm quick to see my primary doctor who is sympathetic and proactive, repeatedly calling malignant melanoma 'the great imposter' due to its ability to mask as an ailment other than cancer.

Today, as a 75 yo woman experiencing the slings and arrows of aging, my doctor visits are ever-increasing, leaving me wondering if my insurers are in fact contributing to their bottom line by refusing to allow the former standard of care for patients with known malignant melanoma. Is my new right leg pain arthritis or bone cancer? Are my GI distresses routine or colon cancer? In addition, there's the constant worry of what may be brewing in my body that hasn't yet manifested in any detectable way. Once malignant melanoma is diagnosed, at any stage, it's a waiting game. Not a good one.

I'm fortunate - and grateful - to have Medicare and a good supplemental plan but not all people are in my situation. And yet, even with the insurers I have, current standard of care has denied me and many, many others access to best medical practices.

@bluelizard: You bring up an important point - as we age, it can be especially helpful to stay engaged in our health care, so small concerns don’t turn into bigger ones. Most people with access to insurance should have the benefit of this ability for medical visits and/or medically necessary interventions.

I can well understand the concerns following the diagnosis of skin cancer, as I personally have had all three: several basal cell (I will be undergoing treatment for yet another this coming Tuesday), squamous cell and malignant melanoma that has metastasized. It can be very frightening indeed. You have been wise to report and follow up with with your medical provider when you notice something amiss. According to both the National Comprehensive Cancer Network (NCCN) and the American Academy of Dermatology, for Stage 1 melanoma frequent full skin exams and lymph node checks, typically every 3-12 months for the first 5 years, focusing on self-exams and physical checks for recurrence or new primaries, with routine imaging generally not recommended unless symptoms arise, stressing patient education and personalized risk assessment is the recommendation.

Being mindful of our health means taking symptoms seriously while also trusting evidence-based medical guidance and being an active participant in your care. It can be troubling after any diagnosis of cancer to fear an untoward symptom as alarming but helps to keep in mind that while health concerns are valid, they’re best addressed through informed medical care rather than fear or worst-case assumptions. Does that sound like a reasonable approach to your own healthcare that you've largely been following?