Immunotherapy: Keytruda (pembrolizumab)

Merry, Thanks for posting this information about the new dosage and protocol of Keytruda (pembrolizumab) for all cancer types for which this drug is used, including lung cancer. I moved your post to this discussion where members are talking about this drug.

I too would like to hear from anyone who is getting the new dose of 400 milligrams (mg) every six weeks instead of the current dose of 200 mg every three weeks.

I am not, as of today, a candidate for immune therapy should I need it. I have what is called Multifocal Adenocarcinoma of the lung and for some reason, my type of cancer doesn't respond. I certainly hope that this changes. But I know that many of you take Keytruda. The FDA has approved a higher dose taken less frequently.:https://www.curetoday.com/articles/fda-approves-higher-dose-of-keytruda-across-all-indicated-cancer-types.
Have any of you who are on this medicine been given the new protocol? How are you responding?

Good morning @edb. I have been on Keytruda for just about a year now. The only side effect, which just started about a month ago, is a rash. Pretty much all over my body. Even on my scalp. My pdl-1 levels were very high so we decided just to do the Keytruda and no chemo. Just had a scan a couple weeks ago and there is a very small amount of activity on my right lung, small amount on the lymphe node on my neck. We are going to start radiation on my hip the first part of January since that is where must of the activity is showing up. The best advise I can give you is to stay positive and find strength and comfort in God. He truly works miracles. The very very best to you and your wife. Sending prayers.

I’m having my scan done at Mayo on 27Th of Jan. Will be curious what mine will come up with also. Quit chemo treatment and on immunotherapy only for 4 treatments than scan to see what tumor, nodules and cells are doing. Used to get really sick from the 3 different chemo’s infusions and immunotherapy decided to go for quality rather than quantity.
Where are you having scans done?
Colleen

Hi Merry,

You’re so kind for responding; thank you. I hope you are doing well.

We’re doing good here. At this point we don’t think it’s unreasonable to suspect this has been triggered by a gradually building reaction in her abdomen over time to her Keytruda-alimta therapy, but of course a scan later in January will tell us a lot more. She’s done so well since starting treatment in January 2019 that it’s sort of selfish not to expect at the very least a hiccup or two, if that is all it is. But her appetite is good and she feels normal otherwise, so blessings counted.

Thanks for the additional information. I did read on another forum about a melanoma survivor who experienced multiple swollen lymph nodes from her Opdivo treatments. Several would swell, calm down, and others would pop up elsewhere, etc. So we’ll just cross our fingers and hope it’s treatment-related.

Thanks again.

@lisalucier- Good morning @edb- How are you holding up? Swollen lymph nodes are common with certain cancers and esp. lung cancer. They could indicate trouble or are just reacting to what is going on around them, or an infection I have a couple of swollen nodes. They indicate that they need a look at by a doctor! I have only had chemo and during that time everything seemed to be off, my blood count, my energy, my appetite.
This article might help you understand more:
https://www.curetoday.com/publications/cure/2016/melanoma-2016-2/in-watching-for-the-side-effects-of-immunotherapy-you-are-your-own-first-line-of-defense

Here's more: https://www.keytruda.com/side-effects/
https://www.curetoday.com/publications/cure/2016/melanoma-2016-2/in-watching-for-the-side-effects-of-immunotherapy-you-are-your-own-first-line-of-defense

How are you holding up? There is a lot of good news with her test results!

Hi, @edb - thanks for clarifying her status. @merpreb may also know about this situation with swollen lymph nodes linked to pembrolizumabm (Keytruda) treatment for lung cancer, so I'd like to invite her into this conversation.

Hi Lisa,

Thank you! We received gene test results back in February 2019 after my wife had already started on Keytruda (the Dr didn’t want to stall treatment while awaiting gene test results). Her test showed a 60% expression for PDL1 and a 67% expression for ROS1.

She did very well on Keytruda for the first 13 cycles or so; partial remission with virtually no side effects. The last three cycles she began to experience a very gradual slowing down in her digestive system, despite continuing good results from her scans. After the last cycle she experienced moderate pain in her gut for the first time, sometimes almost immediately after eating. We ordered a scan and in the meantime tried a 24-hour clear liquid/jello fast to try to press reset. This definitely helped and she’s pain-free today and back on a regular diet. Feels fine in fact. Bloodwork as of last Friday is excellent.

All of this is a head-scratcher for her oncologist bc the most recent scan (while she was having the abdominal pain) shows newly swollen lymph nodes in her abdominal area. All of her previous affected areas show mild shrinkage to steady state. She also got an A+ on her last PET scan in October, and she feels much better now than she even did a week ago.

So for now we’re suspending treatment, watching the lymph nodes in the abdomen, and will go back for a visit (and probably another scan) in the mid-January timeframe. We do know we have the unused ROS1 genetic therapy in our back pocket if we need it.

Which is a long way back to my original question: what experiences, if any, have people had with swollen lymph nodes linked to their Keytruda treatment? I know it’s a possible side effect; I was just looking for real-life examples. @richcolleen seems to have had similar symptoms to my wife at about the same stage of the same treatment regimen (!), which was definitely helpful to learn. But I’d love to hear from people with real-life experiences of swollen lymph nodes linked to their Keytruda treatment.

If you’re asking me I do have appointment on the 27Th and 28th for scan and blood work after 4 treatments of the keytruda only at the Mayo in Rochester, MN.

Hi, @edb - glad you connected with @richcolleen. I wanted to let you know I've moved your post here to an existing thread, "Immunotherapy and chemo; Keytruda side effects," so that you can connect with others here also talking about this topic.

Please meet @ina3 @schmeeckle64 @hopeful33250 @2onlow8 @doughy42 and others.

You indicated you'd know more in late Jan/early Feb. Do you have another appointment with the oncologist at that time? Genetic testing results?