› Forums › General Melanoma Community › Keytruda side effects?
- This topic has 10 replies, 10 voices, and was last updated 7 years ago by
Nal64.
- Post
-
- March 27, 2017 at 7:00 am
Diagnosed with IIIc Melanoma in November of 2015.
Following several surgeries, the first treatment plan was Yervoy. This wound up being scrapped as the first infusion came with a little bonus – an eight week bout of colitis that would knock my socks off multiple times each day.
Plan B was T-vec. Received injections for three months with minimal side effects. However, my first set of full scans showed that this treatment wasn't really accomplishing much – other than pissing the cancer off as it continued to grow and spread.
Third time's the charm. I'm now approaching my sixth month of Keytruda infusions. After the third month scans, I'm miraculously NED. However, I'm not sure if it's a blessing or a curse. There are a few of the regularly associated side-effects (fatigue, joint pain, headaches, muscle aches, feeling cold) but those are gladly acceptable considering I'm alive and kicking.
Here's the problem: I've developed periodic crushing chest pain. The frequency (several days in a row to once or twice a week), intensity (from 2-12 on a scale of 1-10), and duration (30 minutes to 24 hours) is always random. When these episodes hit, I am powerless and completely shut down (in addition to being paralyzed by pain and anxiety). I've had every cardiac and gastric test imaginable and check out fine. The doctors can't really tell me what's going on. I'm not sure if this is the Keytruda, a combinaton of the three types of treatments I've had, or something else alltogether. It concerns me, because what should be the excitement of being declared NED is completely overshadowed by these episodes. February and March have been extremely rough, and I often find myself wondering if I should be rooting for the cancer (or even speeding up the process myself) because there's no way I want to continue this. Not just from a selfish standpoint either – it pains me to see what this is doing to my family and relatives. Just curious if anyone has had a similar experience?
- Replies
-
-
- March 27, 2017 at 6:10 pm
I don't have anything to offer, just want to say I'm so sorry for all you are going through. It has to be so frustrating that they can't seem to find the cause and give you some relief! My husband was on Keytruda for about 4 months and had the typical side effects: diarrhea, rash & vitiligo. He never complained of chest pain.
Hoping and praying you get some relief soon.
-
- March 27, 2017 at 6:53 pm
That sounds excruciating! I was on Keytruda for 20 months… after failing 4 rounds of Ipi the year prior. Developed some heart rate issues, but nothing that felt like crushing pain or heart attack style! I'd be terrified too! Docs had me checked by a cardiologist… scans, holtor monitor, blah blah blah, but never did figure out the cause. I've got a known left bundle branch block… we discovered that the first ever EKG for surgery. All of my medical team seems to think that is something I have likely had all of my life, as it was recorded prior to ANY cancer treatments began. But the heart making sudden jumps (40-50 bpm higher than they should be) began after the Yervoy. I wonder if there is some kind of tie there. I didn't have the immune "over response" that you got, so I question if perhaps your heart took a bigger strike. It's just odd that "they" (your docs in your case, and mine with me)… can't find anything on typical testing. I'm thankful that I'm not in crushing pain with it. I can totally understand why you are knocking on every possible door to find an answer! Best wishes for you to get the issue resolved.
-
- March 27, 2017 at 7:02 pm
Shot in the dark. You mention joint pain. I recognize that there isn't a joint in the middle of your chest, but I will say that when I attempted to taper down to a low level of prednisone (for PD-1 induced arthritis)–everything hurt, including my chest. If there are no other solutions, should you and your onc consider a course of prednisone, e.g., 20 mg/day, to see if this helps with the chest pain?
-
- March 28, 2017 at 1:44 am
I took nivo for 2 1/2 years and experienced nothing like what you are describing. However, it is known that anti-PD1 can cause myocarditis and pericarditis, as well as conduction abnormalities. Your episodes sound like angina that could be, possibly, related to that. While you say that you have had "every cardiac and gastric test" in the book…if I were you I would seek a cardiologist well versed in side effects that immunotherapy can cause. Of course, it could be something unrelated altogether. However, I want you to celebrate being NED for years to come and it sounds like these episodes need to be evaluated until an answer and relief is found!
If you need info to speak with your docs about….I have been posting all data/reports of odd but important immunotherapy side effects for some time. Here is the latest installment with links to prior posts:
There are many strange things included. However, you will find many heart related issues noted. Hope this helps. I wish you well. Celeste
-
- March 28, 2017 at 11:46 am
Hi there coach, I would have another go at my medical team or maybe a heart specialist. If you look back at the post Celeste gave you, they talk about myocarditis!!! A quick google later, https://en.wikipedia.org/wiki/Myocarditis , in the side effects section it talks about chest pain and how long it can last. Best Wishes!!! Ed
-
- April 4, 2017 at 5:36 am
I have been on Keytruda for almost a year and have had horrible chest pains. Before treatment I have experienced costochondritis, which is an inflammation from your ribs to your breastbone. It is horribly painful, I'm not sure if this is what is causing your pain, but mine has flared up with Keytruda infusions.
-
- April 18, 2017 at 5:43 pm
My husband (stage IV since 2014) also had heart pain after receiving ipi followed by a year of keytruda. His heart would start beating erratically, eventually fall into v-tach and would then stabilize itself with a few normal beats before doing it all over again. He was hospitalized twice for it. The first time they performed an MRI of the heart ( we had to fight to get this done ) and did not see any tumors around or on his heart. They did a cardiac ablation on a spot they felt showed some unusual activity. This surgery didn't help but the flecinide he was prescribed did. Several docs were consulted to determine if this was caused by the keytruda. He had had a rash, headache and extremely low cortisol levels before these episodes but they all ruled out Keytruda as the source. My belief is that they all connect somehow. His immune system was definitely attacking his adrenal glands and pituitary and from what I have read both of these organs help your heart regulate itself. Low dose replacement steroids have also been added to his regimen and help immensely. I should also mention that he is a normal weight and works out about 5 hrs/week. He had no previous heart conditions. Best wishes on getting your pain under control
- You must be logged in to reply to this topic.