› Forums › Cutaneous Melanoma Community › Recurrence — wait-and-see or Opdivo?
- This topic has 15 replies, 10 voices, and was last updated 7 years ago by
MovingOn.
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- May 22, 2018 at 6:45 pm
Hi – I’ve been browsing this board for a while, so it’s probably time to come forward and say hello!
Pardon me if my lingo is not quite proper… I was diagnosed with stage IIIc metastatic melanoma (T3cN1aMx) in February 2014 at age 38. The tumor on my back was removed, and later, so was a huge patch of skin. I underwent a sentinel lymph node biopsy under my right arm, which wound up being positive for melanoma. I soon had the remaining lymph nodes in the area removed — 2 out of 12 of which contained melanoma.
At that time, they also discovered a few cancer cells in the tissue surrounding the lymph nodes, so I had a few weeks of radiation which extended from the site of the initial tumor, under my right arm, and partly across my chest.
My first post-surgery/post-radiation CT scan that October showed no evidence of disease (yayyyyyyyyy!), and that happy trend continued for four years, until two months ago.
After a routine CT scan in March 2018 (at age 42) showed a large abnormality under my LEFT arm – a needle biopsy revealed it was a melanoma recurrence. I went back into surgery last month to remove it, as well as the other lymph nodes in the area, none of which contained melanoma.
My surgical oncologist recently offered Opdivo as a treatment option – though he said that, personally, if he was in my situation, he would play a “wait-and-see” approach instead. Of course I’m not a medical professional, but my thinking is that if I have rogue cancer cells in this one lymph node that suddenly multiply after four years of NED, it seems likely that I probably have other other melanoma cells hanging out somewhere in my body.
Have you been in a similar situation? What did/would you do if you were in my shoes? Thanks in advance for any support or advice you may have.
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- May 22, 2018 at 7:05 pm
Hi Patrick,
I was diagnosed with stage 3a in 2014, did interferon for a year, NED until 7/2017 with in transit reoccurence, just did surgery and watch and see until 12/2017 but another in transit popped up. Had surgery to remove it and started Keytruda in 1/2018, CT scan in 3/2018 showed liver lesions and 1 lesion in my lung. Stopped Keytruda and tried taf/mek for a few weeks, but could not tolerate the side effects. Now I have another in transit again as of last week. Dr appt this Thursday to see what is next. That is my situation, hopefully yours will be NED from here on out. I probably would have done Keytruda after the first in transit if it was offered, but it was not at that time. I think adjuvant Opdivo or Keytruda is having some impressive results from what I have read, but others here are much more knowledgable and will give you some great advise. Best wishes to you for continued good health.
Vince
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- May 22, 2018 at 7:51 pm
Not really in your shoes exactly. 3B last year. "Best results with lower tumor burden" is a phrase that burned into my brain. When is that? Probably as early as possible. Release the pac-men before there are too many pre-tumor ghosts to eat.
After a year of Opdivo treatment my thoughts are basically 1) very glad I did it, 2) hope it works, 3) if it doesn't work, I will be far better off for knowing that I am a "non-responder". Being a PD-1 non-responder is not the end of the road upon re-occurance.
Remember adverse selection on side-effect reports. I wouldn't ordinarily come here to report to tell you I had virtually none. So if you had no side effects, WITF would you not take the meds?
I loved my surgical onc. But he was not up to date on melanoma treatment based on the standards of knowledge in this layperson's forum. Perhaps yours has a more POV to share. Get treatment seems like the rebuttable presumption, this is not a jump ball question (w/ watch/wait) anymore.
Just my opinion.
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- May 22, 2018 at 9:24 pm
Hi Patrick, the data has been coming in fast and furious in the adjuvant setting with many new options opening up that are showing great # when it comes to recurrence free survival. You have Nivo, Pembro and targeted therapies as well as combination Ipi+Nivo in trial and may be soon available as well. Watching and waiting has become a thing of the past with these great options. Here are a couple of link of articles talking about adjuvant treatments. Best Wishes!!!Ed https://www.onclive.com/publications/oncology-live/2018/vol-19-no-3/focus-moves-to-earlier-settings-in-melanoma?p=1 https://www.onclive.com/publications/oncology-live/2017/vol-18-no-20/new-adjuvant-therapy-era-builds-in-melanoma
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- May 22, 2018 at 9:26 pm
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- May 22, 2018 at 9:51 pm
Sounds all to familiar. I had a primary removed that was .9 with no lymph node biopsy. 14 years later (This March) I end up with a swollen lymph node. The biopsy on the lymph tested positive for melanoma (3c). Had all of my axillary nodes removed and 5 of those tested positive. Nothing was ulcerated and they referred to this as regional. In my discussion with my onco, watch and wait was never discussed. In fact we went right to the discussion on treatments available today that 14 years ago would not have been available. His recommendation was Opdivo for one year. These little cancer buggers can float around along time (even 14 years). I'm not a medical professional but I think I would go for the Opdivo. If your medically NED, now would be a great time to do "mop up". Oh, and if I was 42, I'd say lets wrap this up and get on with life.
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- May 23, 2018 at 12:55 am
Have you seen those memes….Don't be like_______________, be like____________!? Well, there you go. In 2003 at age 39…melanoma to right back…positive node to right axillae….Stage 3B. No options other than interferon…which is no option. 2007, second melanoma primary to left arm, all nodes negative this time. Still no treatment…because there was none. 2010 lung and brain mets. Surgery to lung. Radiation to brain. Lucky to get in nivolumab (Opdivo….called MDX1106 back in the day) trial for 2 1/2 years. Last dose in June of 2013. Still NED (no evidence of disease). So….
Don't be like Celeste without treatment and disease progression! BE like Celeste once Opdivo was an option…and stay NED!!! This primer might help you become acquainted with treatment options and the vernacular:
I wish you my best. Celeste
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- May 23, 2018 at 1:33 am
YES! What she said (above)! You have the option of Opdivo, and I would take it if I were you! I thank God every day that I have that option. Almost anything beats waiting….
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- May 23, 2018 at 1:29 am
I am also stage 3C after surgeries and radiation. After 10 doses of Nivo I developed AE's only a fraction of patients deal with including myocarditis, type 1 diabetes, and colitis. To me it is a small price to pay for being NED and I would not hesitate to take it again. The chance of recurrence is a much greater risk than life altering AE's.
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- May 23, 2018 at 12:20 pm
My 17 year old son was just fully diagnosed at Stage 3a…he will be starting Opdivo next week. Wait and watch is just not an option we are willing to take. Our surgical oncologist and the medical oncologist both told me of it were their child they would do the medication….and as a nurse I definitely agree!!!! So many people have positive results from the Opdivo, the benefits of the medication outweigh the risks at this point. All it takes is one melanoma cell to get away and hide somewhere else in your body only to pop back up somewhere else in a worse case scenario…..once the treatment was approved it was an easy decision for us to make. So Opdivo here we come!!!! Good luck!!!!!
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- May 24, 2018 at 9:57 am
Hi Patrick,
I have Stage 4 Met/Mel with a current re-occurance, surgically removed, after 3 1/2 years of remission. My doc ordered genetic testing from ,"Caris Life Sciences, " covered by insurance, to see which drugs might best work for me. Much to my surprise I had 0% of PD-L1… which in my understanding means that for me, Opdivo and Keytruda would not work as I do not posess the mutation that it uses. t Wishing you all the best. Ann
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- May 24, 2018 at 11:56 am
Hi Patrick and Anna,
You can both see that I posted some information about PD-L1 tumor testing and anti-PD-1 response to Anna's post above. I have been studying melanoma data for many years and I am not sure that we should put all our decision making eggs in the "Caris Life Science" basket. Validity and specificity of some of these types of tests remain questionable. Not absolutely certain that is a problem with this particular company…but it is certainly something to consider. Additionally, melanoma sucks great big hairy wizard balls. Some of the many reasons that make that statement true are these: Melanoma can don its own invisibility cloak when it comes to hiding from our own immune system. Melanoma can mutate within the one human….with tumors testing one way at one point and differently at another. Melanoma has MANY molecular pathway…not just a couple…and we don't fully understand the ones we know about and probably are unaware of many others. Additionally, while (assuming that the test is 100% accurate and reliable) the presence of PD-L1 on the tumor seems to really affect response to anti-PD-1 in urothelial (bladder/renal) cancers, for instance, that is not necessarily the case in melanoma…as you can see by the article I posted above. Hope this helps. Yours, celeste
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- May 24, 2018 at 1:35 pm
Hi Annalive, you might want to take a look at Onclive presentation from last June that discuss the topic of biomarkers and tests run on patients to inform treatment options for melanoma. The advice that you are giving is not accurate based on current medical research on the topic. Here are two presentation by Melanoma expert panels on the topic of biomarkers. The second link is on topic for the first couple of minutes then it goes into other ideas. https://www.youtube.com/watch?v=HvB8cZj_qeI https://www.youtube.com/watch?v=KhV1Zyi6r8E
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- May 24, 2018 at 3:28 pm
One more item if you are interested Annalive, is a recent oncology forum on biomarker, neoantigens and future treatments by PeerView Live presentation. If you go to the link below, it is for Dr. Omid Hamid's twitter and then on May 7th he posted a presentation from peerview. It is super interesting with biomarker at the start and very good at the 17:00 min mark to the end of first presentation. Dr. Omid Hamid presents at one hour 35min mark and is up to date and his presentation that I would assume he will present again at ASCO in June. It is clear from the biomarker presentation the that more research is needed and we are far from being able to call winners and loser's from using Pd-L1 staining. Best wishes!!!Ed https://twitter.com/OmidHamidMD
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- May 24, 2018 at 3:30 pm
One more thing, you have to sign up but they don't send you shit, it takes about one minute, I used medical professional and clicked 0 in the how many people are viewing the presentation section. Peerview is for Oncologist and medical professional to stay up to date on current research.
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- May 24, 2018 at 6:18 pm
In addition to getting on immunotherapy, please consider seeing a different oncologist. What your oncologist said about preferring to watch-and-wait does not sound like a melanoma specialist. Another thing to consider is that even though your current oncologist can get you immunotherapy medications, their inexperience with patients on immunotherapy will put you at risk if side effects occur because the on oncologist won’t know the real world early signs of side effects. Lastly, I’ve heard that insurance will only cover adjuvant immunotherapy if it is started within 3 months of surgical resection, so watch your timeline. All the best and hoping for recurrence-free survival for you.
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