- April 21, 2022 at 6:34 pm
I was diagnosed with Stage IIIC melanoma almost exactly 5 years ago, just before my 41st birthday.
After two surgeries (WLE/SLNB + CLND), I started a IPI/Nivo combo trial but only made it through 4 infusions (1 combo + 3 nivo only) before being removed from the trail due to cardiac inflammation. The cardiac inflammation subsided after a few weeks of steroids but the doctors decided to let me recover a few more months before restarting treatments.
I was off the immunotherapy entirely for the next 4-5 months. During this down period, my TSH levels spiked to just over 44 uIU/mL (about 10x normal). I now take 112mcg of levothyroxine daily to maintain proper Thyroid levels.
Once my thyroid was figured out, I then started and successfully completed a 13-months regiment of pembro (Keytruda) on the usual schedule (once every 3 weeks) without complications. My final dose was in February of 2019, just shy of 2 years from the original diagnosis date.
Throughout this time I’ve religiously gotten skin checks, PET/CT scans, and MRIs every 6-months. Since all of these tests had come back clean thus far and I had passed the 5 year mark, my doctor and I agreed to scale the scans back to every 12-months. I’m not due for my next set of scans until September.
I’ve recently had a lymph node turn hard and tender near my original surgical site (left axial). It’s not unusual for my lymph nodes to swell when I’m sick but I’ve never had one turn hard and tender, particularly in this location (near left nipple) when I’m not even slightly sick.
I’m scheduled to visit my doctor next week. He’s going to do a quick examination. Assuming he detects what I am feeling, which is about the size and hardness of a peanut (without the shell), the plan is to do a needle biopsy and send it off to pathology.
Needless to say, my mind is racing.
I used to participate in the forums fairly regularly to educate myself and help others. Eventually I decided that it was not a good coping strategy for me and that it was best to take a break from it all.
I’ve been re-familiarizing myself with the latest research reports but it’s going to take time to catch up on everything that’s happened over the past few years. I was hoping others might be able to speed this along. 🙂
Assuming the test comes back positive for melanoma, it appears my best option is to enters another combo trial, see how the tumor responds over ~6 weeks of treatments, then have surgery to remove the affected lymph nodes, and continue on with immunotherapy until the trial ends (assuming no side effects) to prevent further recurrence.
1> Does anyone know what trials are out there for this type of recurrence? I’ve asked my doctor as well but I’m still waiting to hear back. Also, based on my last experience, there are doctors who will only point you to their active trails and NOT all the trials available to patients.
2> Are there any new immunotherapy combo options available for my type of case? Given my past complications with Ipi/Nivo, there is zero chance they’ll put me in a blind study with that combo as one of the available options.
3> Assuming standard immunotherapy is my only option, what is the data on the effectiveness of repeating another round of pembro (keytruda)? And what is the current recommended dosing schedule and duration these days?
Thanks in advance for the help!! It is greatly appreciated.
- April 22, 2022 at 7:51 am
Since nodes that have cancer are rarely tender, I am going to hold out hope that you are not dealing with melanoma or anything too difficult!!! Still – to answer at least some of your questions:
1. Your best bet for looking at clinical trial options is to go to: ClinicalTrials.gov There you can narrow your search by cancer and stage. Once looking at the trials – you can click on them to see the meds used. Scroll through and you can find inclusion and exclusion criteria. Further down you can find all the sites that are participating in the trial. I recommend if you are remotely interested in the trial – call. You never know what you will learn until you do.
2. Sadly, not much has changed since 2011 in melanoma care when the first targeted and immunotherapies were FDA approved. Although I am in the process of updating it – I put this Primer up in 2017 and it hasn’t really needed an update til now….
3. The one main update addresses another of your questions – see this link – FDA approves Relatlimab plus Nivolumab (Opdivo) for advanced melanoma patients – the down and dirty on Opdualag!!!!
Again, still hoping none of this is needed. However, hope it helps if you do.
- April 22, 2022 at 7:52 am
Sorry to hear about the lump. The needle biopsy will be the next step. I’ve been reading about the new approval for Opdualag (https://www.cancernetwork.com/view/fda-approves-nivolumab-relatlimab-combo-for-unresectable-or-metastatic-melanoma) although the drug’s clinical trial enrolled only previously untreated melanoma patients. My doctor said it would be a possibility if I should need it but I haven’t read where it could be offered to someone who has had the ipi combo before.
Hope you get the answers you need quickly!
Hi AZ-I’m in a similar boat-recurrence after five years with hard/tender lump near original site (parotid gland). Just a heads up-two needle and one core biopsy showed this as a benign adenoma yet my oncologist at U of Colorado said…”hmmm, I don’t buy this with some activity showing in the PET scan…” bless her skeptical heart because after sending the tissue to molecular pathology the markers showed that yes it is a recurrence. So I’d recommend that even if your tissue sample comes back looking benign have your doctors get it to a molecular pathology lab for testing. I’ve been on Taf/Mek for five years (reduced dosage) with very manageable side effects (mostly fatigue) and I’ll be sad to need to switch to a new treatment but such is life with unresectable melanoma…little booger new tumor happily living in a nest of facial nerves…Best of luck and keep us posted!
- August 29, 2022 at 12:07 pm
Thanks JT and sorry to hear about your situation. I’m glad your doctor was diligent.
- September 6, 2022 at 10:50 pm
In my case, melanoma was detected during the biopsy. I just completed surgery after electing to wait a couple months to treat with TVEC and Pembro (see my most recent post).
As far as I know, I’m back to being NED again but still have another year+ of Pembro to go. Only time will tell.
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