› Forums › General Melanoma Community › Lymph node enlargement after 9 treatments of Opdivo
- This topic has 17 replies, 5 voices, and was last updated 3 years, 2 months ago by
soonerjenn14.
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- January 19, 2021 at 4:21 pm
Hello all,I am a long-time lurker, first time posting in this forum. I was diagnosed in April 2020 with stage 4 metastatic melanoma and began treatment with Opdivo the same month. I had a great response – lymph nodes continually shrinking, original mole reduced to nearly nothing. Note – the mets that appeared on my original PET scan (bones and liver) have not been confirmed by any of the scans since then, although there is one questionable spot on my liver that has been yet to be identified for sure (MRI could not capture a clear picture of it, but it was noted it could be a hemangioma and it has not changed in size). My CT scans in November showed continued shrinkage, but then on New Year’s Day, I felt the lymph node and it seemed enlarged again. I messaged my oncologist and he said he would check it at my next appointment (January 8th). He agreed it felt different, and we talked about some possibilities, one being weight loss that could make it appear to be larger. We did a CT scan last week and I got the results today – sure enough, it is enlarged again. I have to go next week for a full set of CT scans and then meet with him to discuss options, one of which could be adding Yervoy to my current Opdivo. I wanted to see if anyone else has experienced this and what the outcome was? How much worse is Opdivo+Yervoy treatment versus Opdivo alone? I am severely disappointed, as it seemed I was really kicking this with just the Opdivo. Any advice, experiences, etc. would be greatly appreciated! Thank you in advance.
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- January 19, 2021 at 11:06 pm
<p style=”text-align: left;”>Hi Soonerjen14, I have a different yet similar starting point to you but mine was 2014/15! Mole removed then lymph nodes enlarged a year later! PET scan showed spread to spleen and possibly liver😳🥺. So long story short, only the obvious nodes were removed so I could start treatment quickly!👍 Unfortunately in the UK immunotherapy was not freely available so I started on Targeted Therapy, Debraf/mek within months I had NED not officially of course but it all looked great! Things are not quite so good now but still way better than it could have been! Have you had any discussion re Targeted Therapy?</p>-
- January 21, 2021 at 10:59 am
Hi Rosiepup, thank you for sharing your story with me! I have yet to have surgery to remove the mole or any lymph nodes. After my initial PET scan they immediately started me on Opdivo (nivo) and I had been doing great until this recent change. We have not discussed anything further than the possibility of adding Yervoy (ipi) to my Opdivo…I have an appointment with my oncologist next week after we do some more scans to see what else might be going on. Best of luck to you in your journey!! -
- January 21, 2021 at 1:26 pm
Hi soonerjenn14,I was diagnosed in February 2020, also stage 4 with disease in my lymph nodes. I was started on ipi/nivo, had the 4 courses and also seemed to have a great initial response, though I stopped responding over the summer. I’m BRAF +, so I started Braftovi/Mektovi first week of September, while continuing on nivo.
At the beginning, my side effects from ipi/nivo were very minimal. Mostly fatigue, and some fevers.
Is there a reason why they decided on nivo monotherapy at the outset, instead of the ipi/nivo, especially with expected mets in your liver and bones? Were they worried about side effects? If it were me, I would absolutely add the ipi as soon as they want to give it to you. Ipi can be described as the wild card, but the majority of side effects, if you have them, can be managed with steroids.
Have you had BRAF testing? Still plenty of options on the table!
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- January 22, 2021 at 9:40 am
Hi TimCT,According to the dermapathology report I read that was sent to my oncologist from the dermatologist, it says “melanoma positive for BRAF V600E mutation by VE1 immunostain”, so I guess I am? We decided to start on nivo only instead of the ipi/nivo combo to see how I would do, and I was responding great. In fact, at my CT scans in November my lymph node had shrunk by half and they decided to put me in a lower risk category, meaning I would only see my oncologist every other month and scans 3-4 months while continuing nivo every 4 weeks. I wasn’t due for more scans until February until I felt the node get larger, and when I went in January they decided to scan it and see. The node has doubled again since November and they also found a “groundglass opacity” on the lower right lobe of my lung (just found this out yesterday). I haven’t talked to my oncologist yet (see him next Tuesday) but the nurse said it could be due to an infectious or inflammatory process. Of course, I had to research it myself and it could also mean cancer which is why I assume they are discussing putting me on the ipi/nivo now.
They did say at the beginning there could be other options, but since I was doing so well we haven’t really discussed them yet. How are you doing on your new treatment so far? Thanks so much for your response and the information!
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- January 22, 2021 at 11:59 am
Hey soonerjenn14,Positive for the V600E mutation means that you are indeed ‘BRAF positive’ and so you have the option of targeted therapy in your back pocket if you choose to go that route.
Totally understand about not doing ipi the first time around. As Ed noted in his other thread, it has the potential to be very toxic, more so than the nivo. For me, I had to sorta make peace with it in my mind and buckle in for the trip.
While my disease is mostly in my lymph nodes, something inconclusive was found in my lungs and liver as well. In May it was termed on the report as “Scattered lung nodules measuring up to 5 mm in right upper lobe are indeterminant.” The same scans found this in the liver: “No definite evidence of metastatic disease with note only made of a few subcentimeter liver hypodensities which are too small to characterize.”
My scans in November, after I started the Braftovi/Mektovi, found this in my lungs: “There are stable scattered pulmonary nodules measuring up to 4 mm in size. There are no new or enlarging pulmonary nodules.” And this about the liver: “Stable 1 cm hypodensity in the anterior right lobe. A tiny hypodensity more anteriorly/inferiorly in the right lobe is possibly unchanged but not as well appreciated on other exams.”
Treatment has been going great, looking at the results. I started on ipi/nivo and then continued with just nivo, until it became apparent that I was no longer responding. We gave it a couple months of seeming stability before thinking about making a change. Much the same as you though, the canary in the coal mine (palpable lymph nodes) let us know that we needed to make a change. We had been discussing my joining a trial that involved staying on an anti PD-1, I think pembro, and adding intratumoral injections. There were all sorts of Covid related delays with the trial however. On the day I was to show up at the hospital and sign off on my entrance to the trial, my doctor looked at the disease progression around my neck and was visibly freaked out, and didn’t think I had the time to wait and see if I responded to the intratumoral. So I started the targeted therapy the next day, instead. All the while I’ve continued to get nivo. The scans in November said, rather anticlimactically, “Decreased left supraclavicular, axillary, subpectoral lymphadenopathy”. So the side effects seem to be getting more unpleasant, but I can’t argue with the response. My doctor is of the opinion that since the targeted meds have significantly reduced my tumor burden, the nivo has kicked back into gear (or my T cells have) and that is why I’ve started having so many skin related side effects (hair falling out and turning white, vitiligo, overall skin sensitivity) and side effects in general. I have scans again in 2 weeks, so we’ll see how those look.
Let us know how the discussion goes on Tuesday!
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- January 22, 2021 at 1:04 pm
Thanks, Ed, for so much information!! I did forget to mention I was on Xgeva for 4 months due to the supposed bone mets, but we discontinued it after multiple scans showed no evidence of them after the initial PET scan. I already have a pretty good case of vitiligo, rashy and sensitive skin, etc. caused by the nivo. I made notes to talk with my oncologist about the targeted therapy you mentioned, but looking at my appointment schedule for next Tuesday they already have me down for an infusion of ipi in case that is what they decide to do. Any suggestions on how to handle it if that is what we do? Like you, I’ve made my peace with it but knowing what to expect always helps, especially since I have felt fairly “normal” on nivo so far other than the skin issues I mentioned.I really appreciate you sharing your story with me and I’ll follow up here after Tuesday! I hope you have continued success with your targeted therapy! We are all in this together!!
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- January 22, 2021 at 2:06 pm
I meant Tim, so sorry about that! I went back and read what Ed said on the other post and confused myself! -
- January 28, 2021 at 8:51 pm
Tim (tkoss),Oddly enough, this CT scan report did not list the size of this “gg opacity” which I found a bit strange as usually everything is measured. After seeing my oncologist on Tuesday, he is leaving it as undetermined for now and see if the ipi/nivo have any effect on it or if it could be something non-cancer related. I don’t, however, have my hopes up too high for that outcome.
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- January 22, 2021 at 3:36 pm
Absolutely bring up the targeted meds, if only for your own peace of mind that a Plan B is in place. There are some doctors that have been using them as a first line of treatment to reduce tumor burden, before administering ipi and/or nivo/pembro. Good that they have already ordered the ipi if you decide to go that route. The infusion is exactly the same as the nivo, with no expected side effects that day. Keep an eye out afterwards, and when in doubt about how you’re feeling, let your onc team know. Good luck!-
- January 27, 2021 at 7:38 pm
Hi Tim,Thanks again for all your advice. We went ahead with the ipi yesterday, as well as a needle biopsy on my lymph node to see if they can determine why it is enlarged again. I did mention the targeted therapy, but they want to see what the ipi might do, and since I still have two “undetermined spots” (lung and liver) they want to keep the node in place to see what it does with the combo drug. As you said, feeling fine today but we will see what the next days and weeks bring. The pharmacist told me what to watch for so I am prepared. Appreciate all the support!!
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- January 28, 2021 at 11:02 am
Sounds good, fingers crossed that the ipi gives it the kick in the right direction it needs!-
- January 28, 2021 at 9:06 pm
Tim CT,Thank you! I am feeling fine so far, I’ve been feeling a little groggy in the mornings and my appetite is not where it usually is (I don’t miss meals unless something is very wrong). I was reading back through this conversation and have to comment on CT scan results – “too small to characterize” “not as well appreciated” “needs attention on follow up” “MRI needed for closer look”…I am relatively new to the big C scene but aren’t these infuriating??? Cause for laughter, but here’s a funny – I got my biopsy results today, which were just as bad, and my oncologist is Greek so I sent it to my nurse navigator “I can’t make heads or tails of this, it’s all Greek to me. Can Dr. M translate it??” NOTE – I absolutely adore my oncologist and this was just a tiny inside joke, honestly. He’s the best out there and I trust him implicitly, but we all need a little humor once in a while. He will crack up too when I tell him!!
Hope you are well and please keep me posted on your next scan results! We are all in this together! Jenn
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- January 29, 2021 at 8:51 am
I am sure I drive my onc nuts, cause i read the path reports before i see him. I read , or deciphered that I had melanoma 2 weeks before the doc’s appt confirming it. Such is the perils of the Patient Portal.as i said at the other thread, my brother got all the attention cause of his weight loss. I gained 5 lbs on nivo. I felt a little better on seeing my onc who has gained 15, from Covid restricitons. My slogan on 3c melanoma with nivo: “no symptoms, no side effects, no sympathy.” Believe me i was ready to wrench every ounce of sympathy and pathos out of being afflicted with the Big C. Instead like one R. Dangerfield, i got no respect.
i am about 8mm away from the combo treatment so keep me updated on its side effects.
and yes, the language and answers from the docs can be inscrutable. For instance we use the term NED, no evidence of disease, a MPIP term, but is not a term of art or science anywhere else. Melanoma it seems has its own language.
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- January 30, 2021 at 11:40 am
Luckily, most of the time I get a note from the nurse navigator before they release my scan results to me so I know what to expect, or they are same day as appointments with my oncologist and we discuss. I still pester the heck out of her on the portal, but they are paid well to endure our questions!!I haven’t have any weight gain on nivo so far, but it also coincided with starting work from home due to COVID so I have been able to exercise more and actually lost about 25 lbs. You’re right; not a lot of sympathy for us that don’t “look sick” for sure, such as it is. I haven’t had any real side effects so far from the combo, but it’s only been a few days. The only thing I’ve noticed is I don’t feel hungry much, but I still eat because I like food. I’m just waiting for it to kick in; the pharmacist told me what to expect and said most don’t make it through the full regimen of 4 doses due to the side effects. I mean to try my best to make it all the way through; I am ready to kick this cancer to the curb so whatever it takes! I’ll keep you posted.
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- January 30, 2021 at 12:36 pm
Something worth reading is the stats from the trial that I was part of called checkmate 067. It has data on melanoma patients out 5 years on and off treatment. The “Discussion section” 5th paragraph talks about patients who had to stop which is around 59% in the Ipi+nivo group because of side effects ( IRAE’s) do as well as those who complete the 4 doses, so I wouldn’t worry if you have to stop since the majority of patients have had to in the past and they do just as well. A plus side to that is you don’t have to keep going for treatments any more but have the benefit of good outcomes. Figure 3 shows what happens to patient over time and the Ipi+nivo group tend not to need future treatments which is a bonus. On another positive option side of things the TIL’s Iovance trial LN-144 is at the FDA for approval and in their data it seems that those melanoma patients that don’t do well on ipi+ nivo or nivo alone seem to be the group that is benefitting the most from their TIL’s program, so option down the road look promising!!! https://www.nejm.org/doi/full/10.1056/NEJMoa1910836 -
- February 2, 2021 at 4:43 pm
Thank you, Ed, for so much information!! This is really helpful and, as you said, options look promising! Best wishes!!
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