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I had some arthritis in my knees and a finger joint brought on by combo immunotherapy (it started after therapy had ended). I used meloxicam, which brought me some relief. The arthritis resolved on its own after four months. My rheumatologist at JHU told me that about 50/50 of immunotherapy driven cases of arthritis will resolve on their own. Just wanted to share my experience. Unfortunately after the arthritis resolved, my response to immunotherapy ended as well.
- August 24, 2023 at 10:44 pm
- March 21, 2023 at 12:40 pm
I don’t have experience with recurrence after such a long period post successful treatment, however I did have a right lung nodule that took a while to diagnose and treat (about 7 months?). I did end up getting on ipi/nivo, which ended up being successful for that nodule.
I also can’t speak to the decision to remove your lower lobe, which may be recommended if your nodule is large – mine was always less than 2 cm, and grew very slowly, but I’d also talk to your oncologist about further systemic treatment to prevent further progression – maybe more immunotherapy which you had previously had success with. Also, getting a second opinion may be warranted if it seems that there is any question about whether to do surgery vs additional systemic/targeted therapies (immunotherapy, SRS, etc.). Hoping others can chime in to add their thoughts.
- March 20, 2023 at 11:39 am
Last week I had my 6 week follow-up scans and appointments at MSK, and I have good news! There was about 30% shrinkage of the tumors and resolution of the edema in my two brain mets, and 50% shrinkage in my paratracheal lymph node that had been suspicious. On the brain PET there was zero uptake/avidity in the area where I have my tumors – they were completely cold, while the areas around them had normal brain activity. The onc said this was the best result we could hope for, but that more time is needed to assess the results of the TIL treatment.
We are going to hold off on doing anything and reassess at the next 6 weeks scans.
I’ve had a lot of whiplash over the past year, especially after responding to the Ipi/Nivo combo, but then progressing again a few months later. It is hard for my family and I to “celebrate” to much given this, but am really encouraged at this early juncture.
As far as continued side effects from the TIL process, I’m still fatigued by the afternoon, and am completely wiped by bed time. I also still have some vision problems, but they have improved a decent amount since being discharged. My hearing has returned as well, probably 100%. My hair has not yet returned – some facial hair is back, but is completely white. I am still taking the antiviral and bactrim as my lymphocyte subsets are still abnormal, but trending in the right direction. I’ve was also able to stop taking the keppra, which I had been taking since my hemorrhage at the beginning of the chemo.
I’ll post again in 6 weeks, unless something comes up, or if anyone has questions about the process. Thank you all for your support!
I’m sorry to hear you are dealing with this Judi. If it is any consolation, I’ve wanted to lose it in a CVS before! I hope your situation improves quickly, without a lot of side effects, and that things will calm down. As the father of two little ones, I feel that the driving restriction may be worse than the meds….
- February 16, 2023 at 5:24 pm
In your previous message you seemed to be looking for some counsel. I’m not sure I can offer much advice for your situation, as it is very tricky and unique. Maybe a second opinion is in order to kick the tires on your Oncs’ plans going forward? If you are near AU (American University) I can recommend Dr. Brandi Page (radiation oncology) at JH in Bethesda – she has helped talk me through my brain issues many times.
Just to provide an update on my experience with TIL trial….
- February 15, 2023 at 9:48 am
Release from Hospital
I was released from the hospital last Wednesday, which was about 2 days after my blood cell counts normalized (WBCs, platelets and Neutrophils. Hemoglobin and RBC were still a little low) and 3 days after I stopped having headaches. I was in the hospital for 20 days.
I’ve continued to feel more normal over time, particularly with energy and appetite. My hearing and vision have continued to bother me, although I’ve been functional as a NYC transplant. It is more of a nuisance than anything, and they may be improving slowly over time.
I also got my Hickman Catheter removed yesterday. Yay!
I had an appointment with Dr. Imber, a MSK radiation oncologist yesterday. We discussed the results of a multidisciplinary conference that they had in the morning about my case (i.e. including medical oncology and neurosurgery). He told me that, since I continue to have zero neurological symptoms, that they will redo a brain MRI in a month (with perfusion, to analyze blood flow), but also do a Brain PET (which I didn’t know they could do, but he said they can tamp down the normal Brain SUV uptake, and get a sense for how active the lesion is). He said that this will allow the hemorrhage to calm down and will give all parties a sense of what we are actually dealing with (TIL mediated swelling, and a treatment success story? or an active melanoma that has resisted treatment and still needs radiation or surgery). Part of the reason they are resisting treating sooner is with radiation or surgery they will need to give steroids, which will tamp down any of the TIL that are doing good work.
Additional Details About My Experience and That May be Unique
I didn’t mention this in previous posts, but my negative reaction to IL-2 (including the hearing and vision loss) was partially attributed by the Dr.’s to the lack of NSAIDs that would help with IL-2 symptoms. Because of the bleeding brain met, I did not receive the NSAID (sorry I forget the name) that is normal for a TIL trial because of the blood thinning factor. This drug is standard in TIL trials and helps patients deal with IL-2. Just wanted to outline this, in case my situation seemed particularly dire, because I was not afforded this relief that is otherwise available.
Also, I received multiple MRI’s and CT scans in the hospital, and will get the next scan in a month or so. This is primarily off the schedule of the trial, and do to the irregular brain met. The normal schedule for the trial (and other TIL trials) is to rescan at 6 weeks post TIL infusion in order to assess efficacy.
I think it is about past time for an update –
- February 7, 2023 at 10:22 am
Last detailed update I gave was before the TIL infusion, so we’ll start from there.
Recovery from Hemorrhage and Chemo Leading Up to TIL
The last I posted was during my recovery from the hemorrhage, which coincided with the first dose of chemo. I recovered completely over the subsequent days, which primarily included wordfinding difficulties. The remaining chemo doses went by uneventfully, although I noticed some additional fatigue and appetite loss. My initial post states that I’d receive low dose chemo, but I’d since find out that I was receiving relatively high doses. I did start losing my hair, and ended up shaving it bald on day 2 of IL-2. I received cyclophosphamide for the first 2 days and then fludarabine for five days.
Day 0 TIL
Uneventful day. A tech “defrosts” my four bags of milky yellow TIL cells that are infused over an hour. No side effects detected, except for the smell. I smell kinda like organic matter? Or garlic? My wife will tell you that it followed me around like pig-pen for the rest of the day.
I’ll detail the process for the IL-2 and then the side effects, some of which are just the IL-2, but some may be the TILs interaction with the IL-2.
The protocol is to receive up to 6 doses over three days. So they scheduled the doses for around 9 am and 9 pm. The bags are infused over 15 minutes, but pack a punch. I did 2 the first day, and then the morning dose on days 2 and day 4. Each dose brought chills within 2 hours. They’d layer me up with warm blankets. The first day I didn’t have more than a minor fever, but I felt awful. The second night my blood pressure crashed, which triggered a septic warning. I went in for CTs, and ultrasounds, and didn’t get any sleep. I continued to feel awful. The next day/night I battled fevers and high blood pressure, and didn’t get any sleep. I was told the IL-2 would leave my system quickly, but I continued to have high inflammatory markers, and continued to feel bad for several days after.
Here are a list of the side effects brought on by the IL-2, or the TILs inflammatory response, in addition to the above:
Dermatology – (1) Rash on hands and feet, and overall body redness. This has almost completely resolved. (2) My moles have become inflamed, peeled off, or otherwise been infiltrated with TIL. This is uncanny experience, as I have lots of moles. Some are just disappearing.
Liver – My AST/ALT enzymes were through the roof since a few days after the IL-2. They are rapidly normalizing. I’m taking protectant meds daily.
Vision/Hearing – I noticed a decrease in my vision and hearing post IL-2. I’ve seen the optometrist and ENT who think that these are inflammatory responses that will resolve completely or some degree on their own. I’m still impaired, and it continues to bother me.
Headaches/Neuro – I’ve had daily headaches (but not today). Neuro thinks that it is unrelated to TIL/IL-2 at this point, and may just be a blend of brain met pressure and my own physiology.
Appetite – I didn’t have an appetite for several days post IL-2. I’ve just recovered my appetite over the past few days. Savory things taste very salty to me.
Malaise – I felt like crap for at least five days after IL-2
My immune system has recovered sufficiently over the past few days to be discharged, hopefully tomorrow. Key things they look for are Neutrophil values, white blood cells, and platelets, all which have normalized.
I had an MRI last night to investigate my headaches, which revealed further blood and edema in my brain met. This may be a promising sign, per the Neuro, and I have no clinical deficits. However it was scary to read, as it is now 3+ cm, with the intralesional hemorrhage. We are waiting for an opinion from neurosurgery, the trial onc, radiation onc etc.
Let me know it you have any questions about the details.
I’ve been warned several times, however, that everyone responds differently to the IL-2. Some people have a better response than me, and some people end up in the ICU. I think that you’ll need to prepare yourself for some curveballs.
I’ve had two of these done on the same nodule. The first came back as nondiagnostic, and then the second came back positive. I was counseled of the risk of not having a diagnosis, and I think that risk grows if the nodule is in a hard to get to place.
- January 26, 2023 at 11:55 am
As for the procedure, I’m assuming you’ll be having a CT guided bronchoscopy under general anesthesia. Each time I woke up feeling completely fine. They wheeled my into a CT chamber, which im sure you are familiar with. The. They tell you to remain still while they make some markings. Them they wheel you up to the bronch room, and lights out!
Hope that helps
Celeste – I’ve been warned about IL-2, but have been told that some react strongly to it and some brush it off. There is no rhyme or reason. Thanks for all you do.
- January 23, 2023 at 9:49 pm
Ed – Yes Dr. Betof told me about this. That is why she is willing to skip a dose or pull the plug on IL-2 if I have a strong reaction. Thanks for pulling the data to support that assertion!
Mark – Yes Dr. Lipson has been my hero (him and is NP Megan). I’m also from DC and visit him at Sibley on Thursdays!
Hey all, thanks for your encouragement!
- January 23, 2023 at 9:34 pm
Well things got off too a rocky start. The first dose of chemo (cyclophosphamide) took a toll. That plus not stress dosing my hydrocortisone (adrenal-insufficient) led to the brain met bleeding. My wife was my champion while I was in the throes of headaches, nausea, lethargy and utter brain fog on Friday and into Saturday morning. I am to be tapered on dexamethasone through wednesday and then a stress dose of twice my daily replacement dose of hydro until i’m out of the danger zone.
I’m still recovering from the brain fog and am searching for words. But each day brings improvement. The headache, nausea, and nausea are long gone thanks to some dex and sodium.
I haven’t missed dose of chemo, am still scheduled to get the TIL Friday after consultation with the trial onc, neurosurgery, neurology, endocrinology….the list is too long. I’ve received excellent care, but nothing replaces a good advocate.
Scooby- I’m sorry you are having to deal with this. Arthritis is terrible. Just wanted to see if you’d gotten the ok from your Onc before going on the methotrexate. I’m guessing mine wouldn’t like it if I had gone on an immunomodulator. But mine was not a severe case. I’m sure debilitating cases and/or cases that may result in lasting damage, methotrexate may be reasonable option.
- August 26, 2023 at 5:16 pm
- March 20, 2023 at 11:16 am
I’m glad to hear that you are doing better, and that you haven’t had any new neuro issues since cutting down the dex. I was on keppra for a while. I think it did contribute to some fatigue and irritability, and I was probably on a smaller dose than you. Looking forward to hearing some good news on your next MRI, and that you’ll be able to reduce the drugs even further. Here’s to some nice spring weather so that the public transportation is easier to manage over the next several months!
Rich – good luck to you and your wife while navigating all of this. I know the amount of uncertainty leading up to a trial acceptance can be very stressful.
- March 1, 2023 at 11:40 am
It is exciting that she is being considered for this TIL trial at UPMC. I visited Dr. Davar there last spring to discuss trials at the time, and had a really good experience with them. They were not offering TIL at the time, but it seems that a lot has opened up since then.
Let me know if you have any follow-up questions about my TIL experience.