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February 20, 2015 at 1:49 pm #22377
I had my first infusion of Keytruda / pembro yesterday. I didn’t see much on the forum on infusion-related side effects, so I thought I would post my experience. The infusion itself was fine–30 minutes from the time the bag starts flowing (versus 90 minutes for ipi). Shortly after the infusion, I began to feel tired. (I would get this same effect from ipi.) I napped for about an hour and then awoke with nausea, stomach churning and chills. Shortly thereafter, I had a bout of diarrhea that had me concerned enough to contact my onc’s office. (I had colitis while on ipi.) I took one Lomotil and my stomach settled down within a few hours (~8 hours after the infusion). This morning I’m feeling fine. I have some residual tiredness, but it seems that my GI issues have settled down (hopefully not jinxing myself). Apparently infusion-related side effects are more common with Keytruda than ipi. Hope this proves useful.February 21, 2015 at 6:44 pm #66438Catherine PooleKeymaster Thanks for sharing Mat! I am sure others will find this helpful. Keep us informed of how this goes for you!February 26, 2015 at 8:13 pm #66439hass71Participant Hello
my wife had her second infusion of keytruda yesterday, her first one didn’t have any side effects but now she’s having pain in the abdominal region where most of the tumors are and some fatigue, it’s been a year now since diagnosis and we hope to have positive response. But we had good blood results after first infusion where LDH decreased to 2600 after being 5000 which is probably a good sign.
Good luckFebruary 26, 2015 at 11:15 pm #66440JonathanParticipant
You’re doing the right thing in being careful about the Pembro side-effects. It’s a truly revolutionary drug (as with other immunotherapies) but we and the oncologists are still learning about how it works and the best methods of administration. It ain’t chemo (and that’s a great thing!). But no one knows if there is an optimal dose or length of treatment time. I just had lunch on Tuesday with a patient who was stage 4, with a 15 cm. liver tumor plus many other small ones in his lungs, who started anti-PD1 on a phase 1 clinical trial 7 years ago at only 1mg/kg every 3 weeks for 2 years, and has been NED for the past 5 years, coming in for check-ups now every 6 months…
Ive been on Pembro since last May (10 months) and had no side-effects at all for months (well, minor dry/itchy skin and newly straight hair…). Perhaps a little tired at about day 5 after each infusion, but hardly noticeable – and a great response – after being on death’s door with major abdominal surgery last June, I now have only one small measurable tumor now that continues to shrink, now at 2.5 cm. even though I’m now off Pembro (more on that in a minute).
However, beginning in November, my labs started showing elevated liver enzymes (not LDH, but AST and ALT – now both about 4 times normal). Still feeling great, though (trip to the Yucatan in January, snowmobiling 2 weeks ago in this nutty winter, etc). So my oncologist has now withheld the Pembro for the last 2 scheduled infusion days, and my enzyme levels have leveled off and are dropping a little (not much, though).
So my treatment question becomes navigating between the two dangers (like Scylla and Charybdis) of possible recrudescent melanoma and liver failure (that can also be fatal, and apparently some early cases in anti-PD! trials went unnoticed until it was too late -sort of like colitis). Should they treat with a short course of steroids to help heal the liver inflammation? Simply delay further drug treatments and wait for subsidence of the inflammation? Continue Pembro? Anyway,to help decide the course of action, I’m getting a PET scan to see how active any remaining tumors are (if any) and may get a liver biopsy to see what’s really going on there. This is when it’s good to have confidence in your oncologist (which I do – the whole team is really great). Good medicine still requires good judgement.
So, stay vigilant, but very confident of your treatment choice. Just a little more info on what I was told about elevated ALT and ASTs – although liver inflammation is reported officially at only 2% or thereabouts in anti-PD1 cases, elevated liver enzyme levels are probably much higher, around 15%, with transient cases, or those not clearly linked to the drug. So it’s more common than one might think. Celeste tells me that the elevated levels can also be caused by older treatments only now having an effect (and I’ve had a bunch, including 3 rounds of Ipi and one ADC chemo!), so it’s all sort of figure-it-out-time.
Jonathan.February 27, 2015 at 3:14 pm #66441
Jonathan, thanks so much for your post–which, as usual, is full of great advice and hope. My GI issues lasted for ~24-48 hours after my first Keytruda infusion. My tiredness (moderate) probably lasted for a day beyond that. I feel fine this week (worked full time, etc.). My pre-infusion labs looked great, including LDH of 196 (even though I had just progressed). Like you and others, I have a lot (possibly everything) riding on Keytruda, so I continue to hope for the best.February 28, 2015 at 7:39 pm #66442buffcodyParticipant Hi Jonathan,
Looking at the possibility of surgery in the abdominal region myself but finding doctors so far reluctant to operate on that area, I was wondering, as I read your post, where your metastasis was located and what type of operation was done. My lesion seems to be just outside the duodenum but not in the pancreas, though it might have some duodenum involvement. I will be receiving my first course of radiation on it (two weeks-5 radiations) next week. I explored your posts from 2014 around the time of your operation but did not find any details. I expect you were too involved and stressed with operation and aftermath to have been able to post regularly at that time. I might have missed one from earlier that year though, explaining your situation. I’m glad you have been doing so much better from your latest treatments.
FrankFebruary 28, 2015 at 8:28 pm #66443JupkeParticipant
Hi to all,
There might another cause for these side effects.
Browsing trough my personal logbook when recieving the last dose of Ipilimumab I discovered an anthistamica was administered just before the first dose of Ipi.
This surpressor of infusion related side effects is wellknown for nausea, lassitude and fevers/chills. Had to experience all three of these adverse effects myself.
The last three infusions only Ipilimumab was administered without any side effects.
BenMarch 1, 2015 at 3:06 am #66444JonathanParticipant
Thanks for the good wishes. I’ve been very fortunate lately, and I hope the same will be true for you as well. I haven’t gone over your old posts, so i’ll just do what you asked and outline my abdominal surgery situation last June.
Although they couldn’t tell how many tumors I had in my small intestine from the scans, they were extensive, and I was suffering intermittent total blockages, where I couldn’t digest anything (i.e., projectile vomiting after attempting to eat or drink). So I became hospitalized for what amounted to 2 months while they hoped the intususseptions and blockages would resolve, as they had before (I’d had noticeable intususseptions over the prior 2 years, associated with tumors). This also meant having the infamous naso-gastric tube as well as a gastric tube inserted to keep my stomach and intestines empty, with no food or drink (nothing by mouth). IV fluids and nutrients only (TPN every night for 10 hours). I had started the anti-P1 a month prior as well. They finally decided to do surgery after the blockages became persistent, but didn’t think it would be terribly extensive. This turned out not to be the case – I was very bloated and had retained a great deal of fluid (about 10-15 pounds worth – felt like I was 10 months pregnant), and apparently when they made the initial incision, my intestines sort of popped out on top of my abdomen from the internal pressure – an 8 hour operation, where they removed 3 separate sections where the tumors were most heavily involved in blockages and intususseptions – a total of 90 centimeters (about a yard), from the duodenum as well as lower down, as far as the ilium and junction with the colon (they also did an ileostomy – not anticipated). So I was extremely unhappy and in a lot of pain when I woke up, and the recovery was slow, especially since I’d been hospitalized so long – very weak. I went home after 2 more weeks, and it took 2-3 months to get rid of the gastric tube, the urinary catheter, and also the major post-op medications (including opium) that were supposed to bring my daily output down.
So it was really a major struggle, I was on death’s door, but I’m now remarkably recovered and feeling better than I have in years. The anti-PD1 has clearly taken care of all the remaining tumors in my intestines and elsewhere (at least it looks that way from the CT scans – I had a PET done yesterday to see if there is any remaining tumor activity anywhere, so I’ll get that result soon -from the CT I do have one noticeable remaining tumor in my armpit that has shrunken to 2 cms, and also in September had 2 small brain mets zapped with gamma knife, but those apparently had been around since the preceding January and had likely been slowed down in their growth by the anti-PD1. I am now no longer anemic at all – my hemoglobin is around 14, so the bleeding tumors are clearly gone – I’d been having about 1 transfusion every week during the preceding year. I’m now snowmobiling and working out regularly, enjoying life – unbelievable. I do have short gut syndrome now as a result of all the lost and ineffective intestine, so I have to make sure to drink a lot of fluids and eat more (I eat about twice as much as I used to in order to maintain my weight – a major new pleasure – gigantic breakfasts in particular, with whatever – bacon, sausage, fried eggs, waffles, pancakes, etc.-have to keep the protein and calories coming since not all gets absorbed!).
I don’t recall the particulars of your situation, except you are a lot younger than me ((‘m turning 75 in August) and are a big swimmer, all to the good. Major abdominal surgery is serious stuff, so do discuss all the likely outcomes in detail and how your post-op recovery will be handled in the hospital and at home. I had excellent care from my wife especially, and also was seen by a visiting nurse and PT guy, all covered by insurance. I have to say I’m now extremely pleased with my situation. The surgeon was reluctant to do the surgery because of the extent of the disease and the assumption that it would come back, but my oncologist urged the decision to go ahead because he was confident I would be responding to the anti-PD1 – I’d had a good response to Ipi for 2 years, which he took as a positive indicator (that’s not how I read the literature, but I certainly am responding nicely).
If you have any other questions, get my email or phone number from Catherine – this is more detail than is probably appropriate for the forum anyway. You can always get a second opinion from the folks at Smilow, not far from New York. I owe my life to them, and they’re simply great.
All the best,
JonathanMarch 14, 2015 at 7:55 pm #66445
Jonathan, thanks for the explanation. As follow-up to my original post– hopefully I’m not jinxing myself, but I seem to be tolerating my second infusion much better. No GI issues, just a little tiredness. My onc’s office told me that this is common–infusion related issues improving at or after the second infusion.
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