lilitm

Dear community, I hope everyone is hanging in there.

Thank you so much Mary and Positivity for your kind and helpful replies last time. I’m sorry it took me so long to reply – I’m always so overwhelmed! I wanted to update you on what we ended up doing:

– On 6/25/18, my dad entered an immunotherapy trial at the NIH pairing 2 checkpoint inhibitors with ablation.

He has had 2 infusions so far of anti-PD-L1 (durvalumab) and anti-CTLA4 (tremelimumab).

On 8/2/18, he had radiofrequency ablation to 2 small new perihepatic lesions. The hope is that the neoantigens released by the ablation will help the primed immune system recognize the cancer and create an abscopal effect (getting rid of all the cancer!)

He recovered well from the ablation and just a week later was exercising again (he has also gained some of his energy back from not being on chemo since his last folfiri May 8th.)

– On 8/11 (this past Saturday), he woke up with a fever and feeling super fatigued. By evening temp was 100.4 so the on-call NIH doctor told him to go to the ER. They ran labs, ekg, scan – could find no infection or reason for the fever, so they sent him home at 3am.

– on Sunday, he still had the fever and fatigue – and then a rash developed! It was maculopapular, all over his chest and back and his face was red, and then appeared on his legs and arms by the next day. It does not itch. The NIH told him to use a corticosteroid cream.

By today (8/15), temp is normal for the past 15 hours and the rash seems to be slooowly fading a bit.

We did a biopsy and it came back as “Superficial perivascular lymphcytic rash (no vasculitis, no interface dermatitis, and paucity of eosinophils.)”

I assume it’s the classic immunotherapy rash I have read about. But if it was an immune-mediated reaction, would that mean eosinophils should have been found?

I hope it means the immunotherapy is working!

I’m concerned about the low fever for several days and extreme fatigue. (I’m also concerned that a potentially immune-mediated reaction this early could mean more immunotherapy adverse affects later on?)

If anyone has any experience or info to share, would be so grateful. Thank you!
My warmest wishes to all,
Lili

Latest update:

My dad’s itchiness got worse during his skipped cycle so I pressed for more bloodwork and an earlier scan. His billirubin was now rising and thank goodness they did the CT scan sooner because it showed growth and early biliary stricture.

So he was scheduled for his first ERCP. I was scared but the GI seemed very experienced with them and said he does plastic stents first, then potentially metal the next time. My dad underwent the ERCP on June 8th and the doctor said it went smoothly. Even though they discharged my dad right after, I’m scared whether he will recover fully. He has had chemo for the past year so it’s not like he is at his strongest. The day after the procedure (yesterday), he could still barely walk around and felt so tired and nauseous, and sore in the spot of the procedure (they also had to cut the opening of the duct a little to get the plastic stent in, according to the notes). He just stared sadly past us and ate a little soup and bread (he’s supposed to be on a low-fat diet now for this, which I’m concerned about how to keep him from losing more weight.) How long does it take to feel good again after an ERCP like this?

Also I am so scared because the scan results of growth mean that Folfiri wasn’t working (that’s what the local oncologist said, even though my dad had been on a chemo-pause for 4 weeks.) The Miami oncologist also didn’t give us any real treatment suggestions, just mentioned phase 1 trials and the likely-inefficient immunotherapy option and then sent my dad for the procedure.

I asked MSK if our oncologist there can weigh in but they want my dad to travel there in person again. He traveled there for every other scan except this one. I mailed them this scan cd so I wish the oncologist would do a video chat or phone call with us so my poor dad doesn’t have to travel all the way there just to hear the treatment suggestion. If there even is one?! I can’t even imagine what a good option would be – he’s progressed on Gem/Cis, now on Folfiri, and has no targetable mutations or immunotherapy indicators.

He was never tested for pd-L1 so I asked the doctor to sign the form requesting it from Foundation One (we have old tumor tissue that can be mailed to them from my dad’s original gallbladder removal) but the doctor mistakenly said that we already tried that and there wasn’t enough tissue to test for pd-L1. (He is incorrect – when we originally sent for genomic testing, it was with a different doctor who didn’t order pd-L1, which has to be ordered separately. I talked to the pathologist and there is enough tissue to send for this test.) I wrote back explaining but he has not replied.

I don’t know if my dad will be ok to travel to MSK in 1 week. I don’t know if they will have anything good to suggest. I don’t know what to do…

I am even thinking of trying to get my dad to see an alternative oncologist I found, Dr. Mark Rosenberg in Boca Raton? Anyone heard of him or has any experience? Although I’m scared if we can trust any slightly out-of-the-box doctor – what if they are trying to profit off our vulnerability? I’m also scared to trust MSK who doesn’t claim to have anything better than the standard tools, and their toolbox is very tiny for stage 4 biliary cancers. I don’t know…

How can we make the best guess about which treatment (or no treatment?) would give my dad the most time and quality life possible?

Thank you so much. Love to all.

Thanks again everyone ~ I wanted to update you:

My dad was supposed to get Folfiri chemo #7 yesterday, but the night before he said he just doesn’t feel recovered enough to get hammered by another cycle of chemo again. So he got approved to skip this cycle.

I wrote to both MSK and Miami Cancer Institute asking: If the current dose and/or schedule of Folfiri is taking away the majority of his “good week” and his energy to be active, how can we balance quality of life and still not sacrifice effective treatment to prolong his life?

The Miami oncologist replied: “For now I would like to keep the chemo on hold not only because of his symptoms but also because his liver enzymes have been rising and I am assuming it is related to the chemotherapy he is receiving. Before we restart chemo at the same dose or reduced doses I would like to make sure that his liver functions tests are improving or at least stable.”

I wonder whether low-dose chemo would be a better option – give him more quality of life and still treat the cancer, especially since he’s inoperable… what’s the point of pounding him down with harsh chemo when it’s not going to lead to a surgery or anything? Are we cutting down his survival time by lowering the dose? Is it better to do no chemo in that case, and just prioritize quality? (Emotionally I can’t even deal with the thought of giving up somehow…) But how much quality could we get if there’s nothing holding the cancer growth at bay? I read that dosages are established by maximum tolerated dose in clinical trials, not minimum effective dose. I tried researching efficacy of low dose chemo and it seems it may be as effective? I’m not sure what to think… as always. Until the past couple cycles, he would recover enough energy by his off-week to exercise pretty much daily. I feel like that has contributed to him doing better than expected…

Love to all

Thank you so much Mary, Billy, and Positivity ~ your responses are deeply appreciated.

His blood tests are every 2 weeks, before chemo. (Folfiri is one week on, one week off.) About a biliary obstruction – as per his last scan a month ago, he didn’t have one. He also doesn’t have a stent. Is there another way to check for this besides a ct scan? Our next scan is in mid-July…

I guess we have to rely on the oncologist to know at what point the results are so concerning as to warrant a change, as Mary said… If only I could trust that they would be quick to respond to a real issue! I worry they are too dismissive and let it get worse before checking on things.

In the meantime, I wonder if these symptoms are important for the big picture:

– My dad has been itchy the past couple days. (His bilirubin is normal and his eyes aren’t yellow or anything…)

– He just started taking Zofran in the evenings when his nausea is at its worst. Until the past few days, he hadn’t taken any nausea meds besides the IV aloxi/steroids he gets during chemo, for the entire time he’s been on chemo (a little over a year now). (He’s allergic to the IV Emend so he was afraid to take the pill form, he is on an SSRI antidepressant so he was afraid to take too much Zofran, and also didn’t want to deal with constipation etc so he was hoping he could keep managing the nausea naturally with ginger and cbd oil, which worked until now.) He took maybe 4 Zofran total in the past few days.

He thinks maybe the Zofran made him itchy, but I’m not sure if that’s a side effect.

– So he didn’t take one last night. And last night for the first time, he was throwing up. Afterwards, he decided to try a Marinol. It might have helped and it gave him some appetite later, but he said he felt a bit woozy. So today he took another Zofran.

Any thoughts or experience with managing nausea? With itchiness but normal billirubin?

Since my dad travels from Miami to Memorial Sloan Kettering every 2.5 months for his scans and for the doctor to call the shots, I was hoping the doctor there could weigh in on his labs. However, they wrote back that since they haven’t seen my dad in person this week, they can’t comment. They told us to ask our local oncologist, but he doesn’t have much experience with biliary cancers. So I think that always leaves me nervous… I wish MSK would be more helpful – I mean, they make me feel that if my dad doesn’t feel well enough to fly to MSK one day, his doctor will just dump him and not care to advise…

Even so, maybe I should ask them the question Mary mentioned – at what point would rising liver enzymes provoke a closer look/change…

I have asked the MSK oncologist “what next” and he said there’s no way to know. I asked the Miami oncologist and he said “maybe a phase-1 trial?” Neither are very reassuring. Without targetable mutations or immunotherapy indicators, I have no idea what a promising next step would be. Any other ideas of the sort of consults to ask for or procedures/therapies to ask about if the next scan shows growth and we have to stop 2nd line chemo Folfiri? Any luck on any other chemo regimens?

Thank you so, so much. My wishes, hopes, and love to all

Thank you so much Molly, it’s so helpful to know the way it works for you with the referral, the timing, and the scans – I hope  our insurance will clear things up so we can plan ahead of time (like you said, last thing any of us needs are more bad surprises.)

Thank you for the reassurance too – I want to turn over every stone for my dad and am so scared that there just aren’t any good stones for us…

Wishing you all my very best, with hopes for health and happiness for all!

Lili

Thank you so much VTKB, it’s so helpful to know how others do these things. I hope you and Kathy are holding strong.

I asked our oncologist’s office at Memorial Sloan Kettering (my dad gets his chemo locally at the Miami Cancer Institute, but goes to Sloan for his scans and the oncologist there makes the calls) – the head nurse said the doctor doesn’t give recommendations for 2nd opinions, that’s on us to figure out. I called insurance and got 2 different answers (one said as long as the facility accepts our insurance, that’s fine – but then someone else said a primary doctor has to ask for prior authorization… I am still unclear when this has to happen, or how an MRI at the 2nd facility would be covered after a recent CT, but we ended up not needing a 2nd opinion at the moment because my dad’s latest scan was unchanged so he will continue with Folfiri for now… I still wish we could see others but if the current chemo is “working” then they can’t predict what they would offer if it stopped (my fear is there is nothing after this 2nd line chemo…)

I don’t know why we’ve never been presented to a tumor board – perhaps because my dad is inoperable sadly. He has peritoneal carcinomatosis. I’ve asked about hipec but he also has some minimal liver mets (around/outside the liver and a bit near the portal vein) so the Sloan oncologist answers any of my questions about trying to adopt approaches from other cancers (like colon cancer where they do hipec even when there are a few liver mets), or do locoregional procedures in combination with systemic therapy with this answer: “No. There’s no data of benefit. He has systemic disease so we need systemic treatment.”

I don’t know what to think – whether any other reputable place would think outside the box either. But there aren’t enough tools in the standard box, we’re already on 2nd line chemo… what to do when it’s a rare cancer, and you have no targetable mutations or immunotherapy indicators? So hard…

Sending all my best wishes