The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Melanoma treatments and quality of life

Forums General Melanoma Community Melanoma treatments and quality of life

  • Post
    Finem Respice
      I have been looking at many online articles (medical/research) about melanoma treatments prior to my first (!) appointment with an oncologist tomorrow.
      I am already well aware of the primary targeted and immuno-therapy treatments, and have read several books about the treatment of melanoma and cancer in general.
      But actually reading the abstracts of some of these papers shows a much darker side to the question of efficacy and side-effects.Below are two.

      They are destroying your immune system. Check out for side-effects for Keytruda, Yervoy, Opdivo, and *all* of them. Look not just at the first list of serious, common side-effects, but look at the section called “For Healthcare Professionals”. This shows how many serious side-effects require management with other drugs, which have their own side-effects.

      Am I wrong in thinking that doing this to patients is crazy? Are people so desperate to live at *any* cost that they allow this to be done to them? I care way more about quality of life than quantity.

      Is there anyone else here who has felt this way?

      Immune checkpoint inhibitors have emerged as a mainstay of melanoma therapy and are playing an increasingly important role in the treatment of other tumor types. The clinical benefit afforded by these treatments can be accompanied by a unique spectrum of adverse events, called immune-related adverse events (irAEs), which reflect the drug’s immune-based mechanism of action. IrAEs typically originate in the skin, gastrointestinal tract, liver, and endocrine system, although other organ systems may also be affected. This article provides an overview of irAEs associated with anti-programmed death-1 (anti-PD-1) antibodies (nivolumab and pembrolizumab) as monotherapy or in combination with anti-cytotoxic T-lymphocyte antigen-4 inhibition (ipilimumab), followed by a discussion of irAEs of special clinical interest based on the potential for morbidity, frequent steroid use, and inpatient admission. We review clinical trial data and provide recommendations on how to manage irAEs associated with anti-PD-1 agents based on clinical experience and established management guidelines. We further illustrate the practical considerations of managing irAEs by presenting three cases of immune-related toxicity in melanoma patients treated with nivolumab or pembrolizumab. A better understanding of the identification and management of irAEs will help inform health care providers about the risks associated with anti-PD-1 treatment, to ensure the safe and appropriate use of these important new treatments.

      Background: Treatment with immune checkpoint inhibitors (ICIs) has been linked to granulomatous and sarcoid-like lesions (GSLs) affecting different organs. This study sought to evaluate GSL incidence in patients with high-risk melanoma treated with cytotoxic T-lymphocyte antigen 4 (CTLA4) or programmed cell death 1 (PD1) blockade adjuvant therapy in two clinical trials: ECOG-ACRIN E1609 and SWOG S1404. Descriptions and GSL severity ratings were recorded.

      Methods: Data were collected from ECOG-ACRIN E1609 and SWOG S1404. Descriptive statistics along with GSL severity grades were reported. Additionally, a literature review for such cases was summarized.

      Results: A total of 11 GSL cases were reported among 2878 patients treated with either ICI or with High-Dose Interferon Alfa-2b (HDI) in ECOG-ACRIN E1609 and SWOG S1404 trials. Cases were numerically more commonly reported with ipi10, followed by pembrolizumab, ipi3, and HDI, respectively. Most of the cases were grade III. Further, organs involved included lung, mediastinal lymph nodes, skin and subcutaneous tissue, and eye. Furthermore, a summary of 62 reports in the literature was described.

      Conclusions: GSLs following anti-CTLA4 and anti-PD1 antibody therapy in patients with melanoma were reported unusually. Reported cases ranged in grade from I to III and appeared manageable. Careful attention to these events and their reporting will be essential to better guide practice and management guidelines.

    Viewing 6 reply threads
    • Replies
          Hi Mitchell,
          Not entirely sure of your exact point. The last article stated that the side effect in question was very rare and usually fairly easily managed. The first is from 2016 and we’ve learned a great deal more about immunotherapy – how to use it, how to recognize and manage side effects, and how to monitor patients much better since then. Immunotherapy was first FDA approved for melanoma in 2011. We’ve come a long way baby!!!

          Still, I do have (and have written a great deal about it on my blog) some concern/issues/twisted laughter about those who have not experienced said side effects stating ever so casually, that they are “easily managed”.

          AND YET…..

          Having been diagnosed with Stage III melanoma (cutaneous melanoma lesion on right upper back with positive nodes to my right axilla) in 2003 when there was absolutely no effective treatments available at the age of 39 and a 10 and 12 year old – treated with surgery to lesion and lymphadenectomy to the axilla – to developing another cutaneous lesion to left forearm in 2007 – STILL no effective treatment – so rinse and repeat – another local excision and complete lymphadenectomy to the left axilla. Back in the day, we called that ‘cherry picking’. Cutting things out as they appear. However, there IS a limit to what you can cut out. AND the ramifications of that little process is far from side effect free. I LIVE with significant nerve damage to my right side and breast. Move forward to 2010 – happy to still be around with a senior in high school and new college kid – a routine chest X-ray (we didn’t have very consistent or clear ways to follow-up melanoma patients back then) showed “something” in my lung. As an asthmatic, it was determined that it HAD to be related to that, so – we watched and waited. Six months. As it never got worse, but never got better, I finally had a bronch and biopsy. Yep. Melanoma. Follow-up scans = brain tumor too. STILL – NO FDA approved effective treatments available though ipi was in trials. So in April of 2010 I had my brain zapped and the right upper lobe of my lung removed. Side effects of that little tadah were less than fun. My husband searched madly for treatment. Nothing. I didn’t qualify for ipi trials as they required “measurable disease” that I had just gone to a great deal of trouble to get rid of. October comes and something feels really weird in the back of my throat – yep. Melanoma again. Surgery – again. Clearly, I am in a rapid spiral toward melanoma everywhere. After amazing luck (based on extreme searching and dedication) my husband stumbles upon a trial run by renowned melanoma Big Dog Jeffery Weber (now at NYU) that was using Nivolumab (Opdivo) in TWO arms. One in Stage IV folks with active disease. One with Stage IV (and a couple Stage III peeps) who had had their disease removed and zapped much as I had. We met with him. I asked why I should be his rattie and not wait for ipi as it was supposed to be approved in March of the coming year. He frankly said I could. But, he wasn’t sure I would make it and further, he could not yet prove it, but he believed that the side effect profile for anti-PD-1 would be less severe. (He was right.)

          I decided to go for it. We didn’t know if we would sprout three heads, die, or go through a lot of trouble with no positive effect on our melanoma. Luckily, I and my fellow ratties did very well!!! I began a 2 1/2 year trial (we now know you don’t need to take immunotherapy for that long) in December of 2010. I took my last dose in June of 2013. It was not easy. I had rashes, fatigue, wheezing (mild pneumonitis), joint pain, and extreme mouth ulcers (a fairly rare occurrence). BUT – I continued to run, hike and garden – spend quality time with my family and continue 12 hour shifts as a pediatric NP. Fast forward to today – side effect did not end the minute treatment did, but they gradually receded – for the most part. However, I am still here. I have been NED for melanoma since 2010. I remain active and ALIVE. I continue to LIVE, run, garden, work, play – all the things! I am blessed to care for a wonderful grandbaby – something at many times, I never dared to dream I would be around to see.

          So – immunotherapy saved my life. Was it easy? NOPE. Worth it. Every bit. You might want to check for posts by Edwin on this forum – riddled with melanoma at a much older point in his life that I was who was treated with immunotherapy and continues to kick butt today!

          A bit of history of Opdivo and how it felt to be Patient #9 – if you are interested: Love Potion #9

          Results of my trial – reported/published out in 2014 – if interested: Results on 33 Ratties

          My thoughts on the publication – also 2014 – How very strange

          My most recent update – Across 13 Aprils

          Probably more than you ever wanted to know. Is melanoma easy? Nope. Are the treatments a walk in the park? Absolutely not. Have they saved lives? Have docs learned to recognize and intervene to better deal with side effects than back in the melanoma dark ages? Would I do it again? Yes, Yes and YES!!!!! Still, what you choose to do is extremely personal and YOUR choice. Hope this helps. I wish you my best. Celeste

          Finem Respice
            @Bubbles, thanks for your thoughtful reply detailing your experiences with cancer therapy. I will be going to my first meeting with my oncologist at Moffitt Cancer Center in Tampa later this morning. I expect that he will do an exam, as well as go over my CT imaging. I fully expect him to give me some prognosis along with a recommended treatment plan.
            I should note that according to my imaging report posted to my patient portal, there was no other evidence of metastasized tumors elsewhere in my body… only the lymph node in my neck. SO, I am hoping that I may only need an excision and some type of (?) treatment to follow up.
                Moffit is where I went for my trial though Dr. Weber is no longer there. Hopefully you will get the answers you need. It sounds as though you are Stage III much like I was when I started my journey in 2003 (though they will give you more detailed and appropriate information I’m sure). Immunotherapy is now approved for folks at that stage. Some folks make it for many years with no recurrence after simple resection. I made it for 4 before a recurrence, a total of 7 before advancing to Stage IV. Some folks never recur. Some recur very rapidly.

                Had I had the opportunity for effective treatment in 2003, I would have been thrilled. I was 39. Had young children, etc. Bottom line – melanoma is a crappy crap shoot. Immunotherapy is an option that has saved lives despite a horrible list of real potential side effects that real live ratties and peeps unfortunately really do experience. (Best you not read the side effect profile of acetaminophen or aspirin – they are BAD!!!!) HOWEVER – deciding what to do for your own care is a personal decision and should be. My final point, is that at Stage III you are not at risk of immediate progression. You could always decide to start immunotherapy and stop should you not like it.

                I will tell you one other fact that could confuse your decision even more – just so you can think about it should it come up (and it should!!!) ~ There are some studies that show systemic treatment with immunotherapy while the positive node/lesion remains in place provides better protection against progression and can make nerve damaging surgery unnecessary or much less invasive as it will shrink the lesion such that surgery is not needed or a much smaller ta dah.

                Hope that all helps and you feel comfortable with whatever you decide to do. c

                Finem Respice
                  @Bubbles (I love your name!)

                  Very good points. I will post again when I have the information from today’s visit.

                  Even this:

                  >>>>Some folks make it for many years with no recurrence after simple resection

                  makes me feel better!


                    Hi Celeste,

                    As always, thank-you for your barrage of amazing facts.
                    I’m particularly interested in this one
                    ‘There are some studies that show systemic treatment with immunotherapy while the positive node/lesion remains in place provides better protection against progression and can make nerve damaging surgery unnecessary.

                    As you know my partner has brain mets.
                    He had 2 malignant groin lymph nodes discovered last year that he had a lymphadenectomy for – however they could only get 1 out. The other 1 was too close to the pelvic wall/nerve bundles so they had to leave it. He has no other body tumours so that’s the one we’re keeping an eye one – it’s shrunk from 3cm to 1cm with 3 cycles of ipi-nivo (yay!). Brain mets have all shrunk >50% with SRS.
                    So it’s nice to know that lymph node could actually be assisting in this positive response as I was a bit upset they couldn’t get them both out initially.

                    Mitch – I wish we had been given the option of immunotherapy when they detected the lymph nodes. In the UK, surgery is still the main therapy for resectable stage III.
                    While waiting for the lymph node op it spread to his brain. There was nothing on his November brain MRI & in February he needed a craniotomy to remove a 3cm cerebellar lesion. It moves so fast & they said was probably in his brain for months but microscopic cells that couldn’t be seen in any scans.
                    I really hope your disease isn’t as aggressive as his! I’d take colitis over brain mets anyday…

                      Thanks for sharing. I will definitely keep posting after I see the surgeon on Tuesday, when I hope to get a date for resection.
                        Hi. Before the February scan, I was wondering if there were any neuro symptoms felt that prompted the scan at 4 – 5 months later? Thank you for sharing.
                      Chris R
                        Finem Respice, best of luck with your consult today. My journey with melanoma began in 2019 with a significant cutaneous lesion on my scalp (9mm thick). Fortunate that it did not spread to any lymph nodes. Fast forward 2022 I went in for my annual PET scan and a 9mm nondual was discovered in my lung and a couple small spots elsewhere. I made it through 3 cycles of Ipi-Nivo before colitis getting to severe. After a break for 2 months I was back on Opdivo for 6 more treatments and declared “in full remission” in March.

                        Long term impacts (so far) stem from it inflaming my pituitary gland. As a result I have hypothyroidism and have adrenal insufficiency. The hypothyroidism is managed with a pill early every morning, 1/2 hour before I get up. The adrenal insufficiency is managed with low dose prednisone (in my case) in the morning. I am more fatigued and as an avid cyclist have found I cannot ride at the same pace or for as long of distances as previously. Humbling, but okay. Has my quality of life changed? Somewhat, but not to a degree that regrets me having done the treatment, far from it.

                        I am almost 60. I like to think the treatment has given me the chance to live with cancer vs dying from it.

                          Finem Respice
                            Chris, thanks for sharing your story. What you described sound like your colitis and adrenal issues were caused by the immuno-therapy drugs. Is that true? If so, that is exactly what I do NOT want, at least not at this stage. FWIW I will be posting the results of my consult today with the oncologist here soon.


                          Finem Respice
                            I am replying to my original thread, so that everyone who replied to me can see it.

                            Today I had my first appointment with my oncologist to talk about what they found and what my options are. The good news is that there were no other spots visible on the scans, anywhere on my body besides my neck lymph node.
                            Because of this, I am 99% sure that I will be taking a very conservative treatment, namely removal of this lymph node with continued follow-up at Moffitt. We do not know how long this new surgery will take to set up, but we hope to still be able to go up to Rhode Island, even if only for a couple of months.
                            If it recurs in the future, I will probably take one of the immuno-therapy treatments.
                            Thanks to all for sharing your stories.


                            Finem Respice
                              I am now 2 weeks out from my neck dissection for my stage 3 melanoma. It is healing
                              okay, but it is a pretty big surgery. There will likely be some long-term effects, such
                              as numbness from my ear down through my neck, and even to my shoulder. Of course, if
                              the cancer has been completely removed, these will be small potatoes! But it’s very
                              weird to feel like your ear is made of wood.

                              On other fronts, I have now completed reading Miriam Kalamian’s Keto For Cancer as well as
                              Jane McLelland’s How to Starve Cancer. Both address diet in the context of controlling (I
                              never say “cure”) cancer, although McLelland’s goes much deeper into the weeds of the
                              chemistry/biology of cancer and how she sees various pathways to attack it. I may as
                              well say that the level of complexity and detail (not to mention the hedging with chemotherapy)
                              makes me a little skeptical of her complete program. If my cancer advances to stage 4, I may
                              change my mind. BUT, I do agree with the actual metabolic theory, as propounded by Dr Thomas Seyfried
                              and others.

                              So from my reading, I am basically doing
                              – a strict keto diet
                              – intermittent fasting, usually 2 meals per day between 9am and 4:30pm
                              – general health supplements:
                              Men’s 50+ vitamins
                              Vitamin C

                              – supplements that have widespread evidence and support for cancer:
                              Curcumin,Quercetin,Berberine,Melatonin,Tagamet (cimetidine)

                              I will have my first post-dissection scans in early November. My path forward
                              will obviously depend on what they show.

                                Hi Mitch,

                                I’ve also read a little of How to Starve Cancer and I’m interested to know why you’ve chosen to go for a keto diet when it mentions a few times in the book that keto diets aren’t effective for melanoma as they use fat rather than glucose for fuel.


                                  Finem Respice
                                    One confusing thing is that I asked about what particular “markers” my melanoma has, and they told me it was SOX10 and MELAN-A. NOT BRAF. So I am not really sure what difference that makes.
                                  Finem Respice
                                    @AshyR I literally just finished How To Starve Cancer yesterday, and I am now just aware of what you have pointed out. Up until now, my reading has been more about cancer generally, but now I have to focus on my melanoma, and figure out what I need to do. I had already been doing Keto (albeit not always strictly) so it was not hard to imagine (based on the metabolic theory as developed by Dr Seyfried et al) to using Keto as a strategy to help fight my melanoma. One of my TODO items is to look at going back on a statin (I used to be on Crestor), as a possible cancer-fighting agent.
                                    I won’t deny that this may have thrown a wrench into my plans, but I will be seeing an integrative doctor next week and we will be going over what steps I can take.
                                    Thanks for sharing this.. the article explains it pretty well.
                                Viewing 6 reply threads
                                • You must be logged in to reply to this topic.
                                About the MRF Patient Forum

                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                Popular Topics