Starting a trial on Tuesday

While I can't tell you what the effects of the check point inhibitor will be, I can share my experience with Opdivo which I took from Dec 2010 – June 2013.  I too had to travel from my home in Chattanooga, TN for my care, a trial in Tampa, Florida. This was my routine:  Drive 2+hours to Atlanta mid-day on Thursday.  Catch a flight to Tampa.  Get rental car and stay at a good ol La Quinta near the hospital overnight so that we could be in place for their first appointment of Friday morning.  Get labs.  See Doc.  Get infusion.  Make  mad dash in the rental car back to airport.  Flight back to Atlanta.  Drive back the 2+ hours back to my home.  Though most of the time I met my daughter who was a student at Georgia Tech at the time, for dinner, before my return.  My sister or husband did make these trips with me…but I did ALL the driving.  (I like to drive, they don't.  I knew where I was going, they didn't!  HA!!)  Sometimes I would be having joint pain by the time I returned to Atlanta.  I often had a weird taste and, what I'll call it dryness for want of a better descriptor, to my mouth, by the end of the infusion.  Tiredness was kind-of pervasive.  I had a lot of wheezing after my treatments, but as an asthmatic, I was well versed in how to handle that.

If you'd like a very detailed (and boring!!), but accurate because I had the data from my blog postings, account of my side effects and when they occurred relative to my doses, here you go:  

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html  

So, though there was a lot of mess to deal with and days I didn't feel perfect – I managed all treatments as I described, worked full time (missing only 3 days of work), exercised, and LIVED through a 2 1/2 year trial.  Not everyone can do that, but that was my experience and I bet it can be yours as well.

I wish you my best.  Celeste

Hi Jenny, I love cancer research and learning new thing, TIGIT would be one of those new things!!! I came across some articles on the topic and will post the link below. It sounds like it will be similar to another checkpoint inhibitor called Ipi since the drug is binding to the antigens presenting cells. The question I would be asking is how are the other patients on the trial doing and what does the toxicity look like. I agree with Bubbles on side effects with Nivo (Opdivo) are not to bad for most patients, I drive myself for treatments and have been doing so for a few years now. My only concern would be if the drug interaction is similar at all to Ipi+Nivo then driving alone for a long trip might not be smart, since you might have side effects that require an expert in immunotherapy to manage. Having a clear plan with your oncology team is very important especially with a new drug combination. Best Wishes!!!Ed https://www.onclive.com/publications/oncology-live/2017/vol-18-no-03/tigit-emerges-as-new-target-for-immune-checkpoint-blockade-strategies?p=1

Hi Jenny, I love cancer research and learning new thing, TIGIT would be one of those new things!!! I came across some articles on the topic and will post the link below. It sounds like it will be similar to another checkpoint inhibitor called Ipi since the drug is binding to the antigens presenting cells. The question I would be asking is how are the other patients on the trial doing and what does the toxicity look like. I agree with Bubbles on side effects with Nivo (Opdivo) are not to bad for most patients, I drive myself for treatments and have been doing so for a few years now. My only concern would be if the drug interaction is similar at all to Ipi+Nivo then driving alone for a long trip might not be smart, since you might have side effects that require an expert in immunotherapy to manage. Having a clear plan with your oncology team is very important especially with a new drug combination. Best Wishes!!!Ed https://www.onclive.com/publications/oncology-live/2017/vol-18-no-03/tigit-emerges-as-new-target-for-immune-checkpoint-blockade-strategies?p=1

My husband is in a blinded study: bi-weekly nivo and possibly/probably a 1/3 dose ipi every third infusion. No side effects after infusions – he goes to work.

Three months in he developed colitis/diarrhea. He otherwise felt fine, though logistically it was difficult. (Can I get to a bathroom in a 10-second dash?) Lomotil and then prednisone were prescribed, and two infusions delayed. Travel would have been out of the question.

After another couple months it recurred. Lomotil and prednisone were prescribed earlier, one infusion delayed and it resolved quickly. But the guess is that the culprit is ipi.

The only other side effect was just once mid-way between infusions. He became dizzy. The oncologist wondered if it could be dehydration and I drove him to the center. He was given i.v. fluids, was fine and now drinks more water.

Side note on side effects – the medical center (not melanoma center) has a traditional Chinese medicine center, and he began acupuncture sessions. One colitis symptom (blood) stopped after the first or second session, just before going back on prednisone. (We wish he had begun sessions earlier.) NIH has articles about its use for fatigue from treatments and for other conditions, and our insurance covers it. 

And maybe make a reservation at a hotel that allows same-day cancelations? Just the adrenaline spike and first-time process could be draining, let alone a side effect. Driving is relaxing for both my husband and me, and dealing with hotels far more tiring, but that’s personal preference.

Good going on fitting into a study, and let us know how it goes.

Beth

Hey Jenny!

we are in the same boat! In an Uber as I write this. My husband drove the 45 min to the air port, then 2 hr flight, then 40 min Uber to the Hampton. Then 8am infusion for Jake. It’s a trial with a pembro cousin drug and an inhibitor called C-met(I may be forgetting from my brain being fried). Jake has been tired and the pills give him some nausea. He has lost another 6lbs and he has several new tumors we see. It’s been 5 weeks. We meet w the Dr today to look at other options. I hope yours works for you!! We have sure put lots of money into travel! But working on some medical discounts this week. And taking Jake to Hawaii to NOT think about cancer for a week! Good luck❤️

After a Keytruda infusion, a 12 minute walk home was tiring.   After an Opdivo infusion, the 12 minute walk home is easy.  After an immunotherapy infusion I usually took sick leave the rest of the day.  I felt better resting at home, but I probably could have travelled.  I would not have been able to travel far during Yervoy/Opdivo immunotherapy.  This treatment gave me very bad diarrhea. I needed to wear an adult diaper at night and when I was more than 2 minutes from a toilet. I could look at a book, but I could not read.  I did not have the mental ability to drive a car.   Severe adverse effects began soon after my first infusion of Yervoy/Opdivo.   However, this combination immunotherapy saved my life.

Hi Jenny

I was also in a trial with obdivo but only took one treatment before my thyroid said no more. I traveled a long distance (600 miles) and actually drove 80 % of the way home with no issue. I am stage 2B and was told one more treatment would cause irreversable harm to my thryroid so i figured it wasnt worth the risk. Good luck.