Should I take Nivolumab for stage 2B nodular melanoma at age 75?

Posted by matt75 @matt75, 4 days ago

My pet scan was clear and had an excision and lymph node removal and was clear there. My oncologist wants to have me to take a 17-course treatment of immunotherapy drug Nivolumab. I worry about the side effects and wonder if at 75 years old just monitoring it with scans and skin examinations would be enough. Meeting with my doctor next week to discuss. Does anyone have any thoughts or experience with this drug?

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Profile picture for joetex @joetex

@grammato3 I am going to do that this week. My sons are both out of state but we stay in contact weekly and one was on the phone while I talked with the oncologist. My arm tumor has a high risk of recurring melanoma but there isn’t anything to watch to measure success. Also the oncologist said there is no evidence yet of increased survival rate from immunotherapy, just reduced chance of recurrence. Patients with recurrence are moved up to other therapies. I hope at least quality of life would be better by having a longer time before more therapy is needed.

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@joetex: I'm glad to hear you were able to have your sons listen in to your appointment with the oncologist. I'm curious as to the type of melanoma you have, if you're open to sharing, and the rationale your provider has for stating that there is no evidence of increased survival from immunotherapy.

As far as I have learned, researched and been informed by health care experts, the survival rates as a result of immunotherapy have yielded such excellent results to the extent - even amongst the otherwise healthy older population (those without significant comorbidities or illnesses) while that melanoma had previously been considered a terminal condition it has now become in many cases a highly treatable condition and often curable chronic condition. This may be something worth clarifying at your next visit. Additionally, the most common way to measure response is through Imaging and Response Tracking that typically involves labs and imaging such as CT, MRI and PET scans. Again, this is something to be discussed further with your oncologist along with the afore mentioned risks vs benefits of immunotherapy.

Perhaps it would help to write down these questions to discuss with your sons and care team. When will you be meeting with them next?

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Profile picture for Susan, Volunteer Mentor @grammato3

@joetex: I'm glad to hear you were able to have your sons listen in to your appointment with the oncologist. I'm curious as to the type of melanoma you have, if you're open to sharing, and the rationale your provider has for stating that there is no evidence of increased survival from immunotherapy.

As far as I have learned, researched and been informed by health care experts, the survival rates as a result of immunotherapy have yielded such excellent results to the extent - even amongst the otherwise healthy older population (those without significant comorbidities or illnesses) while that melanoma had previously been considered a terminal condition it has now become in many cases a highly treatable condition and often curable chronic condition. This may be something worth clarifying at your next visit. Additionally, the most common way to measure response is through Imaging and Response Tracking that typically involves labs and imaging such as CT, MRI and PET scans. Again, this is something to be discussed further with your oncologist along with the afore mentioned risks vs benefits of immunotherapy.

Perhaps it would help to write down these questions to discuss with your sons and care team. When will you be meeting with them next?

Jump to this post

@grammato3 My tumor is graded IIb or IIc. There was a difference in two pathology reports and my oncologist is going with IIb for now. They did not find a sentinel lymph node after two attempts with injecting tracer. The reason for his saying there is no evidence of higher survival rates is that he is referring to no clinical data or trials with just immunotherapy vs. no treatment for this stage of melanoma. One reason is that using the new drugs is fairly recent so there’s not much long term data. You are right about longer lifespans and even cure but that is not for just immunotherapy alone, it seems. The patients who have recurrence or advanced stage cancer would have additional treatments like T-cell therapy, surgery, radiation etc. depending where the cancer was. Since I’m NED after they removed the tumor my only treatment option right now is immunotherapy and there’s no data showing that by itself that would give me longer life. It would give me more time before recurrence if I had recurrence at all, but if I chose no treatment to start with then I could still get the advanced treatments if it recurred. I was surprised with this and it really makes me think about risks and benefits of starting immunotherapy now. My oncologist is chairman of the Melanoma center at MDAnderson, one of the top cancer centers in the world so I assume he knows his stuff. He has already laid out the details for follow up blood tests, scans, etc for either choosing treatment or not.

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I forgot to add that it was really helpful having my son on the phone and the doctor was very good with it too. Like you mentioned I will be talking with them both about this. I was hoping for a definite reason to start treatment immediately but it isn’t that clear cut unfortunately. And with the chance of serious side effects I have to have a plan for care if needed.

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Profile picture for joetex @joetex

@grammato3 I am going to do that this week. My sons are both out of state but we stay in contact weekly and one was on the phone while I talked with the oncologist. My arm tumor has a high risk of recurring melanoma but there isn’t anything to watch to measure success. Also the oncologist said there is no evidence yet of increased survival rate from immunotherapy, just reduced chance of recurrence. Patients with recurrence are moved up to other therapies. I hope at least quality of life would be better by having a longer time before more therapy is needed.

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@joetex : My oncologist wrote up a memo of what we discussed when we first met with him on the courses of treatments depending on what was discovered in tests and scans. In this memo he stated "For patients with stage IIB melanoma, the odds of cure without any additional postoperative treatment are approximately 70%. We improve the odds of cure with immunotherapy after surgery (excision) to approximately 85%." I'll follow up with this with him on Wednesday as well as side effects.

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Profile picture for matt75 @matt75

@joetex : My oncologist wrote up a memo of what we discussed when we first met with him on the courses of treatments depending on what was discovered in tests and scans. In this memo he stated "For patients with stage IIB melanoma, the odds of cure without any additional postoperative treatment are approximately 70%. We improve the odds of cure with immunotherapy after surgery (excision) to approximately 85%." I'll follow up with this with him on Wednesday as well as side effects.

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@matt75 Thanks for the information. It’s confusing to see the different predictions of recurrence. My oncologist gave me a lower chance of recurrence-free time. They use a prediction tool from the Australia Melanoma Society that refines the risk by adding age, tumor thickness, mitotic rate and other factors. Australia has more melanoma cases than any other country in the world so they have analyzed a lot of data. That predicted a higher chance of recurrence for me. I like your numbers! I’m interested in what you decide. Thanks.

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Profile picture for Susan, Volunteer Mentor @grammato3

@joetex: I'm glad to hear you were able to have your sons listen in to your appointment with the oncologist. I'm curious as to the type of melanoma you have, if you're open to sharing, and the rationale your provider has for stating that there is no evidence of increased survival from immunotherapy.

As far as I have learned, researched and been informed by health care experts, the survival rates as a result of immunotherapy have yielded such excellent results to the extent - even amongst the otherwise healthy older population (those without significant comorbidities or illnesses) while that melanoma had previously been considered a terminal condition it has now become in many cases a highly treatable condition and often curable chronic condition. This may be something worth clarifying at your next visit. Additionally, the most common way to measure response is through Imaging and Response Tracking that typically involves labs and imaging such as CT, MRI and PET scans. Again, this is something to be discussed further with your oncologist along with the afore mentioned risks vs benefits of immunotherapy.

Perhaps it would help to write down these questions to discuss with your sons and care team. When will you be meeting with them next?

Jump to this post

@grammato3 This is from Cancers journal 2023 and supports what my oncologist told me. The article was for IIb-IV .
“Adjuvant therapy options tested over the past three decades include high-dose interferon-α, immune checkpoint inhibitors (pembrolizumab, nivolumab), targeted therapy (dabrafenib-trametinib for BRAF mutant melanoma), radiotherapy and chemotherapy. Most of these therapies have been demonstrated to enhance relapse-free survival (RFS) but with limited to no impact on overall survival (OS), as reported in randomized trials.”

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Profile picture for joetex @joetex

@grammato3 My tumor is graded IIb or IIc. There was a difference in two pathology reports and my oncologist is going with IIb for now. They did not find a sentinel lymph node after two attempts with injecting tracer. The reason for his saying there is no evidence of higher survival rates is that he is referring to no clinical data or trials with just immunotherapy vs. no treatment for this stage of melanoma. One reason is that using the new drugs is fairly recent so there’s not much long term data. You are right about longer lifespans and even cure but that is not for just immunotherapy alone, it seems. The patients who have recurrence or advanced stage cancer would have additional treatments like T-cell therapy, surgery, radiation etc. depending where the cancer was. Since I’m NED after they removed the tumor my only treatment option right now is immunotherapy and there’s no data showing that by itself that would give me longer life. It would give me more time before recurrence if I had recurrence at all, but if I chose no treatment to start with then I could still get the advanced treatments if it recurred. I was surprised with this and it really makes me think about risks and benefits of starting immunotherapy now. My oncologist is chairman of the Melanoma center at MDAnderson, one of the top cancer centers in the world so I assume he knows his stuff. He has already laid out the details for follow up blood tests, scans, etc for either choosing treatment or not.

Jump to this post

@joetex: Thank you for providing the circumstances of your treatment to date that definitely does change the role of immunotherapy in consideration of the current status of NED and age. I'd not been aware you have already undergone treatment for your melanoma - and that it was successful; what a relief that must be!

Research has demonstrated that those who have such findings for this type and stage of melanoma generally have a high rate of of 5 year survivorship with standard monitoring. Although immunotherapy may help with reducing the risk of recurrence even more, your oncologist did note that studies to date have not yielded findings in those who underwent adjuvant immunotherapy (after removal) were statistically significant findings in improvement.

As you have pointed out, this is why it is so important to be armed with clear knowledge about the type and extent of one's medical presentation as there are so many different types of melanoma and associated treatment modalities that can be discussed and understood during conversations with the oncology team. Equally as important is to have trust and confidence in your providers, which you have established.

You've done a great job being a health care advocate and express your background well. Can you continue to post updates to inform me as to how your doing?

REPLY
Profile picture for joetex @joetex

@matt75 Thanks for the information. It’s confusing to see the different predictions of recurrence. My oncologist gave me a lower chance of recurrence-free time. They use a prediction tool from the Australia Melanoma Society that refines the risk by adding age, tumor thickness, mitotic rate and other factors. Australia has more melanoma cases than any other country in the world so they have analyzed a lot of data. That predicted a higher chance of recurrence for me. I like your numbers! I’m interested in what you decide. Thanks.

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@joetex and @matt75: You each bring up factors that are used in assessing predications in assessing recurrence rates. There are differing findings across geographical regions due in part to evaluation of sun exposure patterns, regional healthcare guidelines and organizational frameworks in conducting and gathering analytical data.

One thing I've learned as a patient is percentages are just that: an estimate of probability. and obviously not a guarantee. So some of us may respond, some may not. In any case, I like to go with the odds of responding! Hope that works in each of your favors as well.

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Profile picture for Susan, Volunteer Mentor @grammato3

@joetex: Thank you for providing the circumstances of your treatment to date that definitely does change the role of immunotherapy in consideration of the current status of NED and age. I'd not been aware you have already undergone treatment for your melanoma - and that it was successful; what a relief that must be!

Research has demonstrated that those who have such findings for this type and stage of melanoma generally have a high rate of of 5 year survivorship with standard monitoring. Although immunotherapy may help with reducing the risk of recurrence even more, your oncologist did note that studies to date have not yielded findings in those who underwent adjuvant immunotherapy (after removal) were statistically significant findings in improvement.

As you have pointed out, this is why it is so important to be armed with clear knowledge about the type and extent of one's medical presentation as there are so many different types of melanoma and associated treatment modalities that can be discussed and understood during conversations with the oncology team. Equally as important is to have trust and confidence in your providers, which you have established.

You've done a great job being a health care advocate and express your background well. Can you continue to post updates to inform me as to how your doing?

Jump to this post

@grammato3 I will be glad to. There is uncertainty that makes a choice harder so I welcome any help. And I know each person is different also. Thanks.

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