Hi everyone, my name is Corey, I'm 31, and have recently found a recurrence of melanoma after almost 10 years NED. In 2008, I had a WLE of a mole removed from my left calf, as well as SLN (which tested positive) and 20 lymph nodes (not positive). I was stage IIIA at this point, and completed the year long course of Interferon. (1st month via port 5 days a week, then 11 months of 3 shots per week, self administered)
Last week I saw my oncologist after finding a pea sized lump under my knee on the same leg. It is painful to push on, but hasn't caused other issues. After a PET/CT scan, my worst fears were confirmed. However, I'm extremely thankful that it doesn't appear to have spread anywhere else. Now I've been "promoted" to stage IIIC.
I have a surgery next week to remove the tumor and surrounding tissue. Then we will find out more about which treatments are available/recommended.
I was doing ok after the initial diagnosis, but have now been diving deeper into survival statistics and have basically been in tears all day. (40% 5 year survival rate, and 25% 10 year.) I have a 5 year old son, a 1 year old daughter, and an incredible husband. I am just crushed right now. The past 10 years have been incredibly hard in many ways due to our difficult start in marriage dealing with my cancer (we had been married exactly a year on my first surgery).
I'm just wondering if there's anyone who's had a similar diagnosis, particularly with a late recurrence, and what treatments you chose to do. What side effects did you experience? How long was the treatment plan? I am a very healthy eater, I exercise 5 days a week, have a very positive outlook and support system. I am hoping and praying all of that works in my favor.
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coreyanneluck
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My heart goes out to you and I fully understand your pain and fears . There are effective treatments for melanoma now that were not available ten years ago and many more in clinical trials . I am
hoping and praying that these treatments will be game changers . Statistics are scary and I just avoid them as they increase my anxiety . Your positive outlook , your support system and your little ones are all important aspects of recovery . Best to you !
I am currently undergoing treatment for a recurrence after 3 years cancer free. I currently have tumors in my right axillary lymph nodes and my liver. I have been undergoing the Yurvoy & Opdivo combination immune therapy. It has been a lot easier than interferon , I completed that entire corse the first time. I'm unsure about how effective it has been we are going to determine that through scans on Tuesday.
I experienced Similar but less severe side-effects to interferon. For a while my liver enzymes went through the roof but they did return to Normal.
Glad to hear your side effects have been manageable! I’m definitely worried about what treatment plan I’ll be on, and how I’ll manage it all with staying home with my 2 young kids.
Best wishes for your recovery. The statistics are based on past history and there have been many improvements in treatment since your initial issue. My son is listed as Stage IIIB and is being treated with Opdivo for the past 2 months. The plan is to continue treatment for 12 months. So far the combination of treatment and a ketogenic diet has worked with no reoccurance or significant side effects. I hope that you would see similar results.
I agree about the statistics, they are based on old data because the new treatments haven’t been around long enough but they are proving to be very effective! My husband had to remind me of this over and over last year when I was diagnosed (a year ago yesterday) but the treatment (Opdivo/yervoy) worked incredibly well and I was declared NED 6 months later. Best of luck to you. I assume you have already started treatment and I hope it is going smoothly.
Yes, I have completed one round of either Optivo or Optivo/Yervoy combo (in a trial). How did you handle the treatment? My joints have been pretty sore, but other than that it’s been ok.
Yours was the first post to come up when I logged onto this site, and we have some similarities. The first thing I want to say is that statistics and survival rates are just that--basic data. I find I can't look at all that because of my diagnosis so I am not going to say much about that. I have to have more hope. My story is that in September 2008 I was diagnosed with a Stage 3B melanoma in my left groin that had a metastasis to my sentinel node. Additional lymph node removal came back clear and negative for further cancer. In 2009 I did a year of Interferon A--one month IV, then 11 months every three days self administered. It about killed me. I had every horrible side effect, and three hospitalizations due to complications. I have had two other Stage 1 melanomas removed over the years as well. That brings me to two weeks ago--I have now been diagnosed with recurrent advanced melanoma in my lymph system. It is basically spread through all my lymph nodes from my left leg, through the pelvis, abdomen, chest, and up into my left armpit. They call this a distant lymph node recurrence, and it is ten years after my initial Stage 3. At this point there is no new mole or lesion to remove, it seems to have all recurred in my lymph system. I have a two year old son, and it is unknown if the hormones involved in my pregnancy could have re-started any growth. I am having genetic testing done, but the course of treatment based on my diagnosis--which is now considered Stage 4 advanced recurrent melanoma, is Keytruda. I am waiting on BCBS to approve the start of my treatments as I speak. I have heard Keytruda is the magic bullet against melanoma and I know of other patients who are having clear PET scans one year into treatment. My current treatment plan is two years of Keytruda every three weeks, per port infusions.
So far, there is no talk of end of life or palliative care which gives me a lot of hope and as I said, I can't look at the statistics for survival. All I know is that even three years earlier my diagnosis may have been a death sentence, but with Keytruda I actually may have a chance to see my son grow up.
What I am working on now is further imagining studies and also a second opinion at Northwestern Medicine in IL. It seems these "late recurrences" are becoming more and more common with melanoma and I am interested to see what everyone else has to say.
Hopefully we can connect more and I hope your surgeries go well. It was a HUGE blow to me when surgery became a non-option....that has always been the treatment in the past. Remove it, get rid of it, feel like it's really gone (though clearly mine never was).
Oh goodness. Yes we do have some similarities, thank you for sharing your story. I’m so sorry you’ve had this recurrence as well, and with children I feel like the impact is so much more real and terrifying. How did you discover it had returned?
My surgery went well, I had the bean sized mass removed from my calf. And no ther sign of disease at this point (pending MRI- which is my biggest worry at the moment). I decided to do a double blind clinical trial at the Arizona Cancer Center with the options being either Nivo/Optivo or Optivo. I thought about pursuing other opinions, but honestly this seems like our best bet, since we have 2 kids and in the depths of a house remodel. Traveling every 2 weeks for a year on top of everything seems like a nightmare.
I’m also doing a lot of research on diet, juicing, and other supplements that have been shown to have some positive impact. I figure it can’t hurt, and if it helps then I’ll really do anything to make sure this doesn’t progress/reoccur. I hate this stupid disease and will do everything in my power to fight it.
How are you doing emotionally? Do you feel supported? I find my days are so up and down that it leaves me exhausted. People cry with me and for me and at me, and I end up comforting THEM. It’s such a bizarre road we walk. The blesssings in it for me are seeing how much our community has risen up to support my family and I. There’s been a ton of silver linings in this for us, and I pray it has been the same for you!
Thank you again for connecting, I’m happy to have at least one person to relate with haha!
I am glad you replied as well--I put a post out looking for people who have started or are doing Keytruda, and I've had no luck so far. That is the only therapy that they want me to start right now--my oncologist wants to see how my recurrence does just on the Keytruda before adding in any other therapies or considering a clinical trial. Which, I am taking to be a hopeful sign. I actually have to go have a brain MRI scan in the next few weeks (I can't remember if I said that before) and I really hope your scan comes back completely clear. When I look at my PET scan online it is the scariest thing I have ever seen. So much dark lymph node involvement, as well as a small possible tumor behind my scapula and to have none of them be surgical to just CUT OUT is very hard for me. However, everyone tells me that the Keytruda kills them from inside. I am still going to seek a second opinion, but I think I want to get the treatments started first.
I would LOVE to know what you have found about diet/supplements/etc. I thought about trying to see a nutritionist or something. Of course, that is just another set of things in an endless loop of "to be done" now. But I could DEFINITELY stand to be healthier. I have been stress eating non stop since I found out my diagnosis, which is terrible. Part of it is that I am on steroids for my back pain from the enlarged nodes pressing on my spine and nerves.
I would have to say discovering this recurrence has been an emotional rollercoaster. The first week, only three weeks ago, was shock and tears. I seriously COULD NOT believe this could be back. TEN YEARS??? How is that even possible??? But then I began to realize how lucky I was. My only symptom, the ONLY thing that even got me an MRI in the first place, was lower back pain. No fatigue, no weight loss, no nothing else to indicate cancer. And the MRI was looking for a bulging disc! It was purely coincidental that the very large, numerous lymph nodes were noted. And then, I was able to get a PET scan within a day of that MRI which was also lucky--as that showed how far advanced the melanoma is in my lymph system. But for all those nodes to be so close to my spine, just behind my lungs, all the way up into my chest and through my pelvis and to have NO OTHER major organs involved (save the brain, which we are testing yet)....I can't help but feel that is giving me a chance. My oncologist was shocked I was still walking upright with how the lymph system is affected in my lower back. So I am taking what I can out of that as hope to FIGHT this with all I have. I could have messed around with chiropractors or physical therapy for months just thinking I had back pain, but didn't. My initial diagnosis of this melanoma was similar--my melanomas have never been "Typical" in the ABC's. My Stage 3B ten years ago looked like a keratosis--they only biopsied it because I was so young (26 years old) and it came back melanoma. My other two Stage 1 melanomas look just like most people's regular moles--they aren't dark, scary, or weird. Maybe a little irregular border, and reddish but nothing to show "MELANOMA". Which is why I have basically EVERY mole removed on me. If one pops up, we take it off. So I am pretty well covered with scars, but so it goes as a survivor.
But I worry that once treatment starts, my outlook may falter which is why I really wanted support.
Yep, I was in shock as well. I wish there was more education some how for us to at least understand that reoccurrence was still possible this far out. I know you have to be your own advocate, but I felt so blindsighted, as I’m sure you did as well. I didn’t even make the connection when I found the lump, even though it was on my same leg and only about 12 inches away from the original site.
I’ve done a lot of research about people curing their melanoma with nutritional. Some are very extreme (the Gerson diet) which I’m not sure is even realistic for a mom to attempt! But I purchased a juicer and have been doing their recommended juices daily for about a week. I still haven’t gotten a clear answer from my doctors if this is ok to do during treatment. I also read a lot about the benefits of vitamin D for further prevention. There were some big studies about patients with low vitamin d levels were more likely to have recurrence. A friend of mine who has stage 4 colon cancer (35 y/o female) has been taking 10000 iu, so I’ve started that as well. Neither one of these things can hurt (from what I’ve gathered), and I want to make sure I do everything in my power to make this go away permanently.
But I totally get the stress eating! My husband and I have done this a lot as well. Might not be the healthiest thing, but I do think it’s part of releasing at least a little bit of stress, and I’m not overly worried about it! This is the craziest process anyone has to go through. I have been having such a hard time with trying to make every day and moment perfect for my kids, husband, and friends in case I’m not here for as long as I’ve hoped. Which is impossible, of course, and I’m putting so much unnecessary pressure on myself. I cry off and on most days, and wish I could make all of this go away.
It sounds like your doctors know exactly what to recommend, and I sincerely hope Keytruda can be your miracle drug. I’ll be praying for you! I’m so sorry you have to go through this again as well.
That is SO Interesting about Vitamin D deficiency linked to recurrence. I have not read about that but I am going to. I actually was diagnosed with severe vitamin D deficiency with my pregnancy, and that is when I started taking it OTC but that was only two years ago. Who knows how long and low it got before then, and no one ever mentioned it. I mean, as a multiple melanoma survivor I avoid the sun like the plague--which makes it hard to be a mom sometimes because I limit our sun exposure so much in summer. I will definitely be talking to my oncologist now about possibly adding in IV Vitamin D. Thank you for sharing that.
What juices are you doing? Is there a certain mix of things they recommend? I could see doing juices. I am pretty open to eating whatever as long as it looks palatable (lol). I don't know that I am ready to try a full out diet but I will look into the one you mentioned.
I am just frustrated waiting for my insurance to approve the start of my treatment. I know that they have to do what they need to, and these are beyond expensive treatments but sometimes I feel like I am just sitting here with Stage 4 melanoma, feeling pretty ok and working and stuff and not doing anything. My insurance has to approve or deny by next Friday, March 2nd. If they deny, my oncologist has all the protocols in place to get it looked at but that will just be more delay. Keytruda is FDA approved and with my diagnosis it should just go through, it's just the waiting.
While I am waiting, though, and feeling pretty ok I am also doing what you are--trying to enjoy my family time, do things to remember. That's been my life, actually, since last year when I lost my 18 year old stepson to a drunk driver. So we have had grief in my life since last January and it was certainly a feeling of "piling on" when I got my diagnosis this month. But I have to believe my stepson is up in Heaven fighting for me, the same as we have been for him every day since that terrible crash.
I don't know if it's something you'd be interested in, but perhaps we could exchange emails? I find it easier to converse that way and I'd like to keep touch as we both go through this.
Oh gosh, that’s so hard. I’m so sorry about your loss. The reality of our mortality really causes us to live fully- and I really wish it didn’t have to come to that!!!
The waiting must be awful. I actually haven’t heard from my insurance 🤔 maybe I need to look into that! That’s a whole separate topic that brings major frustration - stupid health insurance/system, and the cost of everything ON TOP OF fighting for your life.
How crazy you already had low Vit D! I’ve been horrible at taking vitamins, and sometimes even being good about sun exposure. I’m realizing my upbringing was so complacent when it came to overall health (my parents both smoked and drank a TON) that many typical healthy habits weren’t ingrained in me. I can’t even recall a time when my mom put sunscreen on me! And here were are. I have to face all of this. It’s so hard not to blame.
Annnnyway, yes, emails would probably be better! Mine is coreyanne22@gmail.com.
I do have a similar experience. I was diagnosed with stage 4 after being 'cancer free' for 5 years. The melanoma had moved to my lungs. After 1 treatment of Keytruda the tumors were so small they could barely detect them. Side effects are extremely minimal and with recent studies it looks like I can stop treatment at the two year mark!
Hi, Keytruda works miracles. My melanoma moved to my lungs after 5 years of original diagnosis. First treatment of keytruda the tumors were no longer detectable. Side effects are minimal, nothing compared to interferon or what you see with chemo. Read up on the new survival rates using keytruda. Best of luck!
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