› Forums › General Melanoma Community › Seriously Confused Need some assistance and optimism
- This topic has 16 replies, 7 voices, and was last updated 2 years, 10 months ago by
Bubbles.
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- May 27, 2021 at 4:42 pm
Just 3 months ago, I had my quarterly scans completed. Results were as follows:5 nodes in my Neck are clear, Brain is clear, 3 inch Liver tumor is completely clear ( Prays GOD ) but the nodes in my lungs have grown too 6MM and we’re active on a PET. The doctor was highly surprised but confused about my lungs.
The oncologist was thinking and hoping the growth of the lung nodules is due to inflammation.
So I got my last scans a week ago, and 3 of the nodules had grown again to 9MM and 1 to 15 MM. I had a lung biopsy and it was positive.
I haven’t seen the oncologist yet just the PA. He explained they were looking at a trial with IL2 and Opdivo. He also mentioned, since I had dropped weight, he said I probably had between 3 and 6 months left of life.
I have had almost every side effect there is. Colitis, arthritis, dermatitis, severe fatigue blah blah blah. All my blood work has been normal the entire time.
My question is , is this it? I am not a V600. I am a incomplete quadriplegic as most of the know.
please give me your thoughts and recommendations. Im a little down right now.
Angel Hugs and Kisses to all warriors,
Trent
my question
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- May 27, 2021 at 7:05 pm
Hi Trent, the IL2 could be the NKTR-214 version from Nektar pharmaceuticals which has been in development for the last few years and trials are being run at MD Anderson. Data looks pretty good, also something to bring up as an option down the road could be Lag-3 +Nivo which is close to approval and has been tested and worked in patient’s who had progressed on immunotherapy in the past and could be given off label once approved. MD Anderson also has a TIL’s program worth asking about, with LN-144 being considered by FDA for approval and it showed really good #’s in patient population who had progressed on immunotherapy in the past. As far as any one talking about expiration dates, mine was around x-mas 2013!!!-
- May 27, 2021 at 8:00 pm
EdThe lead oncologist at MDA just cAlled. 6 PM. He met with the entire oncology team to include De James Allison. They have decided to place me on Phase 2 of (Dragonfly) or IL12 plus NIVO or KEYTRUDA. I have had great and complete responses with both IPI and NIVO. He explained that in theory. The IL12 should help. He explained the low burden in my lungs is a bonus. So off to study exactly what I’m going in to.
thank you for responding.
Trent
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- May 27, 2021 at 11:51 pm
Hi TrentAm sorry for the bad news but I think your PA misspoke – your scans had shown improvement but some problems in your lungs. So I dont understand the PA’s statement. (And the doctors are saying you did respond to immunotherapy) I agree with all of Ed’s suggestions.
Am glad that you are seeing the experts and they have treatments lined up and called you quickly. I hope you will explain them to us (what is dragonfly??) and how they go for you. Maybe IL12 (whatever this is) will help the immunotherapy.
Good luck Mark
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- May 28, 2021 at 9:59 am
So sorry that you are facing this, Trent. So very glad that MDA is working to get you started on an effective treatment ASAP. Looks like this is the trial that you will be starting = https://clinicaltrials.gov/ct2/show/NCT03991130?term=il-2&recrs=ab&cond=Melanoma+Stage&draw=2&rank=1Your docs may have explained it already, but IL-2 is a bitch! Glad you will be admitted in a place familiar with administering it. Still, as tough as it may be, I know you can do this!!! IL-2 on its own has been known to have positive results that are durable (long lasting) in treating melanoma. A dear one on this forum took it back in the dark ages of melanoma and did very well. It should give a real boost to the anti-PD-1 that you will have administered alongside.
Ed’s mention of the anti-LAG-3 combo is a good one to keep in your back pocket as well. Hopefully, you are embarking on the last treatment you will need!!! Yell if you need to. Hang in there. Wishing you my very best. Celeste
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- May 28, 2021 at 10:13 am
IL-12 from Dragonfly therapeutics sold to Bristol Mayer Squib for 475 million. Hope is this modified IL-12 will help turn cold tumors to hot tumors by helping get TIL’s into tumor. Here are a couple of links. https://news.bms.com/news/corporate-financial/2020/Dragonfly-Therapeutics-and-Bristol-Myers-Squibb-Announce-Exclusive-Global-License-for-Dragonflys-IL-12-Investigational-Immunotherapy-Program/default.aspx. https://www.biopharmadive.com/news/bristol-myers-dragonfly-cancer-immunotherapy/583629/-
- May 28, 2021 at 10:24 am
Here is the clinical trial details, looks like injectable IL-12 plus IV nivo. https://clinicaltrials.gov/ct2/show/NCT04423029 -
- May 29, 2021 at 3:43 am
Ed, you state that the hope is to turn a cold tumor into a hot one.
Of course I hope this therapy works but to have a tumor grow from 6 mm to 1.5 mm in a matter of weeks does not in any way signify a “cold tumor”. Sorry to burst your bubble as your reasoning is faulty.
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- May 29, 2021 at 10:30 am
Dear Melmel, the following two video’s explain ‘hot’ vs “cold” tumors. First one features Dr. Weber back in 2016 when the topic first started to be talked about and at the 3:00 min mark he explains the concept and what drugs are being studied at that time to try and turn a cold tumor ( which means non responding ) into a hot tumor ( which means responding mainly because T-cell are present) . Second video is more recent and features Dr. Postow being interview by Dr. Love on “Researcch to practice” and if you go to 3:20 min mark Dr. Postow explain the concept of hot vs cold again. I hope this will help you to understand the concept and then see how Lag-3 research is part of this and Lag-3 is being used to block Lag-3 on T-cells to allow T-cells to do their thing and kill tumors with the help of pd-1 inhibition as well. https://www.youtube.com/watch?v=J4QdRyaM9YE https://researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=3m10s -
- May 29, 2021 at 10:54 am
Exactly, Edster. Hot vs cold is not about tumor growth. It is the tumor’s ability to elicit an immunologic response – or not! This has everything to do with antigen presentation. Great links that explain. I think you’ve got a good chance of success with your planned therapy, Trent. Lots of top melanoma docs have been doing work with IL-12 (now that Ed set me down the right path!! HA!!). Dr. Daud has worked with it in the form of an intralesional. It is much less of a beast than old school IL-2 and holds a lot of promise. Yours, c -
- May 29, 2021 at 9:12 pm
I have read about cold and hot tumors and it also depends on the amount of mutations present in a melanoma tumor. Apparently, with low number of mutations the tumor is less likely to respond. As with anything cancer related, as cells rapidly divide, they may possess more mutations and on their own they can respond to therapy which they failed to respond initially.Thank you for the links.
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- May 30, 2021 at 3:30 pm
Dr. Allison who won the Nobel prize for discovery of CTLA-4 drug ipi(yervoy) explains mutational burden in different cancers and why immunotherapy drugs work in highly mutated cancers like melanoma and lung cancer and not in other cancers with low mutational loads. 27:00min mark in following video. https://www.youtube.com/watch?v=yax499WfPTg
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- May 28, 2021 at 8:23 pm
I appreciate everyone’s input. My confusion is I had 2. Complete responses and now I have a total tumor burden of the size of your index finger nail. I thought the oncologist would of put me on a clinical trial at a phase 2 level that had anywhere from a 10 to 40% success rate. Here is a copy of the trial phase 1,also here is the schedule I will be on.
htttps://clinicaltrials.gov/ct2/show/NCT04423029In addition, please find below a sample schedule of visits required for the trial. This list is not comprehensive and final, but just for learning purposes. Starting Cycle 5, visits are just once per month. The CTRC is the outpatient research clinic.Screening6/15/2021TuesdayBiopsy, Main lab, Diagnostic EKG, CTRC lab, CT Scan/MRI, Clinic Follow UpC1D-16/21/2021MondayInpatient AdmissionC1D16/22/2021TuesdayIn patient AdmissionC1D26/23/2021WednesdayInpatient Admission dischargeC1D36/24/2021ThursdayMain lab, CTRC Coordination visit (6 hours), Clinic Follow upC1D56/25/2021FridayMain Lab, CTRC lab (30 mins), Clinic Follow upC1D86/29/2021TuesdayMain Lab, CTRC coordination (1 hour), Clinic Follow upC1D157/6/2021TuesdayMain Lab, CTRC lab (30 min), Clinic Follow up, BiopsyC2D17/20/2021TuesdayMain Lab, Clinic Follow Up, CTRC (6 hours)C2D37/22/2021ThursdayMain Lab, CTRC Lab (30 mins), Clinic Follow UpC2D87/27/2021TuesdayMain Lab, CTRC lab (30 mins), Clinic Follow UpC3D18/17/2021TuesdayDiagnostic Imaging, Main Lab, Clinic Follow up, CTRC (4 hours), BiopsyC3D38/19/2021ThursdayMain Lab, CTRC Lab (30 mins), Clinic Follow UpC4D19/14/2021TuesdayMain Lab, Clinic Follow up, CTRC (4 hours)C4D39/16/2021ThursdayMain Lab, CTRC Lab (30 mins), Physician Follow UpC4D59/18/2021FridayCTRC Lab (30 mins)C4D89/21/2021TuesdayCTRC Lab (30 mins)C4D159/28/2021TuesdayCTRC Lab (30 mins)input for questions to my oncologist would be greatly appreciated
Angel Hugs and Love
Trent
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- May 29, 2021 at 1:49 am
Hi Trent,I can’t offer you any good insight on your therapy plan, but I’m praying for you and sending good thoughts your way! Hang in there.
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- May 31, 2021 at 9:16 am
Leaving the science to my betters, I offer this observation. PA’s can be great in providing needed candor that the Onc may withhold. But there is a reason for being highly circumspect in estimating remaining life.My PA once made an offhand life expectancy comment. I could tell she wanted to take it back immediately and it has already been proven wrong – although it was not necessarily unrealistic when made. Ironically, I think she was trying to be helpful as she knows the doc is not overly forthcoming.
Hoping the same for you. I’d let go of that remark, it’s not a qualified medical opinion. The step below “medical opinion” is what? Shooting the shit?
I always wondered when someone will say “put your affairs in order”. I’m not sure that really happens much, nor should it. We know where we stand as well as we need to.
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- May 31, 2021 at 10:05 am
Well put, Three Fitty!!! I have been told that I have 6 months or less to live on more than one occasion!!! Yet – here I am! I have been told TWICE – that I will die due to one cause or another, given we all do, delivered with a rather strange shrug – most recently only a week ago!!!!!! Did the general oncologist (on the first occasion) or esteemed researcher (on the most recent) think I was unaware of this fact? Did they think this factoid was germane to the discussion of my next best treatment options? Were they both complete and total assholes who didn’t (couldn’t??? wouldn’t???) want to answer my questions? Can’t say. But, I think assholery played a large role. So – yeah. Shelf life is hard to predict. As are the reasons folks bandy the time line about.Take good care all. And today? Today I will enjoy to the greatest extent I can and wish the same for all of you! love, les
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