Should I take Nivolumab for stage 2B nodular melanoma at age 75?
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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I am interested in what you find out. I was recently diagnosed as stage IIc and am 84. I see my oncologist today and believe he will want me to take Keytruda infusions, similar to your possible treatment. I’m worried about side effects. I will be watching this post for information. Good luck.
@matt75: As one who was also diagnosed with metasatic melanoma (albeit not nodular, mine was confined to a nodule in the lung) two years ago after I'd retired, I welcome you to Mayo Clinic Connect. It is definitely an overwhelming diagnosis and the treatment options do sound daunting but it does help to understand what the rationale is behind these interventions. I personally found it helped to be armed with knowledge from reliable sites, such as AIM at Melanoma Foundation: https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii/ and Melanoma Research Alliance: https://www.curemelanoma.org/about-melanoma/types/nodular-melanoma.
While age is certainly taken into consideration when planning interventions, it is of prime importance to weigh the type of melanoma in terms of how far advanced it is (for example, the stage), how aggressive a cancer it is, the person's overall health condition and co-morbidities (other illnesses such as heart or renal disease) they may have that might impact treatment). As @joetex mentioned, there can be related side effects to proposed infusions. Not everyone experiences these adverse effects but it is important to be aware of the potential and report any symptoms as soon as noticed.
It helps to be armed with knowledge so you can have an informed discussion with your provider and arrive at a decision that is best for you. Personally, I am grateful for immunotherapy, even though I had to discontinue it earlier than anticipated, as it resolved my metastasis placing me in a category of current no evidence of active disease, requring ongoing imaging at routine intervals. Each of us facing this disease can weigh the risk vs benefit.
Does this information assist with your decision making?
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1 ReactionI met with my oncologist yesterday at MDAnderson, a major cancer center, and he explained the trade offs with immunotherapy infusions. They see side effects in about half of their patients, fatigue, rash, fever. About 10% experience life threatening or fatal side effects. The problem is there is no way to predict how an individual will react and no way to know when it could occur during the treatment period (12 months). That 10% frightens me since I’m 84 and live alone. I’m going to be making my decision in the next few weeks.
@joetex: your oncologist brought up some very important points to consider. I myself have encountered side effects that did result in having to suspend immunotherapy. However, it is worth noting that within 3 months of Keytruda my lung nodule was completely resolved. I do have to continue with regular imaging to monitor for recurrence.
The stage and extent of melanoma may also impact your decision making. Aside from your oncologist, have you discussed how you would like to proceed with your family or those close to you?
@joetex, I'm meeting with my oncologist on Wednesday. The drug Nivolumab he is recommending has the same possible side effects as Keytruda though I'm not sure what the percentages are to having a side effect. Something I will be discussing in length with him. After reading everything about the drug and the stage of my melanoma, I'm most likely going to elect to take it. Did your doctor say that if you experienced side effects even the fatigue, rash, and fever and wanted to suspend it that the side effects would go away? I fear too, that if my cancer would reoccur it could involve even worse treatments. Hopefully you have friends or family close by that be of help to you. I'll let you know what my doctor says. Take care.
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1 Reaction@matt75
I am a 63 year old married guy. I have a history of melanoma, similar to your history. Clear margins, sentinel node biopsy to confirm no spread, and that ended that instance of treatment. This was 10-15 years ago, before immunotherapy came about.
I recently completed Opdivo/Nivolumab and Radiation for Merkel Cell Carcinoma (very aggressive/very rare skin cancer), stage 3 metastasis into the collar bone-area and axilla lymph nodes. I recognized the lump on the arm in October, and biopsy/follow up testing in January and it had already gone to stage 3. The "uncomfortable" side effects were very minimal; an occasional blast of diarrhea. I have also experienced some recent hearing loss (a very rare side effect, but also part of getting older. I had pre-cancer hearing aid use....) which we are currently treating with steroids to see if I can get some back.
I am scheduled for 3rd PET CT as we continue to confirm no longer present.
Having clear margins, staging confirmed by PET, etc, would certainly be a part of of my decision cycle, as would the effectiveness of immunotherapy as an adjuvant treatment.
If I were to have a recurrence of the metastatic Merkel, I would not hesitate to repeat the use of the nivolumab. In my instance, it was very effective with minimal/manageable side effects. Besides a couple extra rolls of TP, I had to get new hearing aids.
Hang in there.... a scary time, but folks are here to listen and support!
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1 Reaction@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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2 Reactions@matt75 The AIM site has a lot on side effects and they say some chronic conditions that develop do no go away after treatment. Bugger! I would copy a nice diagram they have that shows this but I don’t think it’s allowed.
@matt75: I'd like to share this with you as it provides a guide to many of the potential side effects one may encounnter with the various types of immunotherapies of which nivolumab (brand name Opdivo) is included: https://www.aimatmelanoma.org/melanoma-learning-center/side-effect-management-guides/
For me, familiarizing myself with these helped me report any symptoms early to obtain treatment as they can rapidly escalate. You bring up a good point about suspending immunotherapy should any of these occur. This is generally a case specific determination based on the extent of symptoms and the results of any rendered treatment. You recommendation to discuss with the provider and seeking input from loved ones does help in the decision making process. '
Can you let me know how your appointment goes on Wednesday?
@samueljknapp: I see you've had your share of medical interventions over the years. Thank you for sharing and for your encouragement even with some of the issues you continue to encounter and manage.
I found it interesting that when I started receiving Keytruda that the infusion staff assured me how well tolerated the treatment was. It did come as a bit of shock to me - as someone who had previously been healthy - when I did start to experience rather significant side effects that had me sidelined throughout much of the fall and winter. As you said, it is a scary time but it does help to have the support of those of us here, doesn't it?
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