Keytruda

[woco]

I am appreciative and thankful to be on keytruda/immunotherapy, but, I must say, it does kick my butt for a few days after treatments! But, as always, it could always be worse.  I remain positive, but, darn side effects do get me down.  Hopefully, I will adjust in the coming months.  Ken

[BridgetO]

Hi woco, I know what you mean. Prior to my lung cancer I had an unrelated cancer that was stage 3 and aggressive. I has some really butt-kicking treatment, in my case a great big surgery followed by concurrent chemo and radiation followed by more chemo. Followed by long lasting side effects. But here is the good news: 8 years later I am not only ALIVE, but have No Evidence of Disease. So it was all worth it! Hang in there!

[Robert A.]

Hang in there Woco, my wife is being treated with Keytruda also. So far she has had 2 treatments with a 3rd coming up next Monday. My wife has only experienced 2 days of discomfort after each treatment. The treatments are on Monday's and she is fine until Thursday & Friday, she gets lazy and has a sore back and upper body. Friday she is back to normal. We have been keeping a ledger and writing down any changes and these have been the 2 regular symptoms.

[May2]

On 12/31/2019 at 5:12 AM, Robert A. said:

Hang in there Woco, my wife is being treated with Keytruda also. So far she has had 2 treatments with a 3rd coming up next Monday. My wife has only experienced 2 days of discomfort after each treatment. The treatments are on Monday's and she is fine until Thursday & Friday, she gets lazy and has a sore back and upper body. Friday she is back to normal. We have been keeping a ledger and writing down any changes and these have been the 2 regular symptoms.

Hi Robert, I was wondering if your wife Is taking a combo of keytruda and chemo, or on keytruda only. 
Did she got her scans? 

[Robert A.]

Sorry, haven't been on the forum lately. We just got the news today the the Keytruda started off with shrinkage but this latest scan showed the tumor got larger so she is going to be started on Docetaxel.

[jack14]

Can anyone tell me if Keytruda is "harsh" on the peripheral veins? Like some of the chemo-therapy agents, I understand are.  I have searched quite a bit today and everything that I have been able to find suggests that it isn't. My reason for asling is that I am to begin Keytruda infusions next week. 200 mg infused over 30 minutes every three weeks. I had a 20% on my PDL-1 test and have been waiting on the results of a Foundation 1 Gene Panel, which has come back negative for and targets. 

Anyway, I don't want to have a port put in right now and my veins are good. The main Oncology nurse and my general surgeon who recently removed a lymph node for biopsy have been "pushing" a port, and I have been hesitant.  I was informed  today by a lady in my Oncologists office that "the nurses prefer a port because the meds are so hard on the veins of the arm". This was mentioned to me after I told her that I preferred not getting a port for now,. The surgeons contact person also called today and said the Oncologist had wanted them to set me up for a port. She seemed annoyed when I told her I was not wanting one right now and she responded with, " I will tell the surgeon". smh

[Robert A.]

My wife was given her Keytruda treatment through her vein with no ill effects.

 

[May2]

1 hour ago, jack14 said:

Can anyone tell me if Keytruda is "harsh" on the peripheral veins? Like some of the chemo-therapy agents, I understand are.  I have searched quite a bit today and everything that I have been able to find suggests that it isn't. My reason for asling is that I am to begin Keytruda infusions next week. 200 mg infused over 30 minutes every three weeks. I had a 20% on my PDL-1 test and have been waiting on the results of a Foundation 1 Gene Panel, which has come back negative for and targets. 

Anyway, I don't want to have a port put in right now and my veins are good. The main Oncology nurse and my general surgeon who recently removed a lymph node for biopsy have been "pushing" a port, and I have been hesitant.  I was informed  today by a lady in my Oncologists office that "the nurses prefer a port because the meds are so hard on the veins of the arm". This was mentioned to me after I told her that I preferred not getting a port for now,. The surgeons contact person also called today and said the Oncologist had wanted them to set me up for a port. She seemed annoyed when I told her I was not wanting one right now and she responded with, " I will tell the surgeon". smh

I had Keytruda through my vein in arm. There was no problem at all. 
i think you should do what you are comfortable with. They can always add a port if the need arise. 
 

 

[jack14]

Thanks May2

[jack14]

I was wondering if I should avoid eating a few hours before or after my first infusion tomorrow? Or, is there a particular thing that I could eat that might help prevent nausea or bad side effects or in some way enhance the treatment? How about drinking water or juice or something before and / or after? Or during the treatment even?

I picked up two anti nausea meds that the oncologist's NP for the possibility of nausea. Zofran and Compazine. I suppose that since this stuff effects everyone a bit differently it is a difficult call. I guess I will go in with a few saltines in my pocket and a bottle of water just in case.

[May2]

I had the Keytruda by itself, Not combined with chemo. Keytruda by itself doesn't cause nausea. 

The side effects from Keytruda were more inflammatory symptoms, such as body aches, joints pain, slight sore throat, cough sometimes bloating and low energy.
It varied each time. 

Taking Advil regularly helped.

The symptoms were worst the first week after the infusion. The symptoms ease up after the first week. 

I drank water before and after the infusion to make sure I am hydrated in preparation for the inflammation symptoms. 
It is a good idea to be hydrated 👍🏻

-Maybe avoiding food that might cause bloating/upset stomach would be useful.  
 
They start the infusion after they draw your blood and get the result back from the lab. The infusion only takes 45 mins  

To make things go faster, I went one or two days before my infusion appointment to get my blood drawn, this eliminated the waiting time before the infusion.   

I was able to drive myself with no problems at all. 
It was an easy in and out. 👍🏻

Sorry for the lengthy answer, I hope it helps 

[jack14]

Thank you again May2!  I am only getting the Keytruda by its self as well. 200 mg over half an hour every three weeks I think. I hope your trial goes well.

[jack14]

So, I had my first Keytruda treatment Friday afternoon. It wasn't as bad as I had anticipated. although I would rather have been doing something else.  When I got there I had to get a blood draw for a CBC before they would do it. And like you folks have said, that took about half an hour to get back. After the blood was drawn and sent off to the lab I was led into the treatment room  and given my choice of a half dozen chairs.There were two other patients on drips in the room, spread out from one another with masks on.  I was surprised at how comfortable the chair actually was, and the amenities, a TV, wifi tablets with first run movies and internet access.... There were two nurses in masks in there. A 40 year veteran  nurse started a 20 gauge IV in my right arm and said I really needed to consider getting a port. I told her I preferred holding off and explained why. She said that the radiology team could put one in much quicker and much easier than the surgeon. She said they used a different method and they didn't go in as deeply. One of the patients in the room showed me the one he has had for a couple of years now. He said it was put in. in a few minutes after he was put into a light slumber and without any intubation or deep anesthesia. That would work for me if I decide to get a line I guess. The port is high on the chest and under the skin. Wonder why the differences.

Anyway, I am scheduled to get another infusion in two weeks and after that another one a week later. With the labs before each one. If I am reading the schedule they gave me correctly.  I thought it was supposed to be 200 mg every three weeks? That's what the Merk says too. Anyone know what the regimen for  fourth stage NSCLC is? I am on Keytruda only.

So far, I am not feeling any different. The nurse said that usually comes three days later. Flu symptoms....aches and pains. Oh joy

[Rose Kaiser]

I'm on Keytruda and Alimta and have been having treatments every 3 weeks for almost a year. Since you are only on the Keytruda, the frequency could be different. My first treatment was through my arm and it was very uncomfortable for me. I have small veins so I opted for the port. Everyone is different. You should do what makes you comfortable. Good luck with your treatments!

[May2]

Thank you for sharing 

My treatment was 200mg  every 3 weeks. 

Curious to know why your schedule is different. Ask the ordering doctor 🤔. 

Yes the symptoms are flu like symptoms, and manageable, not bad compare to chemo symptoms. 

Ask if you can get your blood drawn a day or two before to avoid having to wait. 

Good to know that you have the option to get a port easily if the need arises. 

 

[jack14]

Oh yes, I do plan on asking my Oncologist about the dose before I go up there again. In fact,  I saw her in the hallway,  the day I was there and briefly spoke with her. But that was before I saw the scheduled infusions. I mentioned o her since I hadn't spoken with her since the Foundation One Panel of Genes came in, that I was disappointed that it didn't reveal any mutaions and she said that actually it had revealed some. But there weren't any that there was a drug for yet, except one that was in trials. She said that might come in handy down the road if it proves effective.

I can't overstate how much I appreciate you fine folks stepping up to help me. I only hope that I might return the favor in some way. Thank you

jack

[May2]

Anytime. 

Which mutation did she tell you you have? 

 

[May2]

I had a similar experience. 

Please note that If the doctor or hospital don't have the medicine you need they won't tell you to try to find it else where. They will proceed with the exsisting protocol  available to them. 

I think it is a good idea to get the name of the new trial medication, and search if there is an open trial in your area. Or in an area that is not too far from you. 

Also check how long it will be before it is approved by the FDA. 

It is good to trust your doctor, but please do your research as well.

[jack14]

No, she didn't and I didn't ask because I wanted to give her some time to post it on my portal or send me a copy of the results.We didn't have a lot of time to chat. I know that it is also a good idea to try and hold on to some treatments for use later on should you run out too. At least that is what I have been told. I would like to know what the mutations are so that I can keep up with any new drugs that may come along. Anyway, I am going to have a chest CT scan in the afternoon to see if anything has developed. Fingers crossed.

Thanks for the heads up, that makes sense. The economics today, especially in the medical field, makes things possible that were unheard of just a few years ago  . I hope you are well and in good spirits?

peace

 

[May2]

You are right, I guess things take time sometimes. 

Praying and hoping things go well 🙏

Thank you for sharing. Keep us posted. 

 

 

[jack14]

Thanks for the prayers, information, kindness, and support. We are so much stronger together. 

 

[May2]

Hi Jack14, I hope you are doing well in your treatment. 

 

[jack14]

Hi May2

So far so good, fingers crossed. I haven't had any side effects and I am scheduled for my second infusion next Friday, the 29th. I had a port put in last Monday by a Radiologist and that is healing nicely. Anyway, thanks for asking. I hope you are doing well?

[May2]

Glad to hear things are going smoothly. 

I am doing ok, the first week on Retvmo(LOXO) was great, the second week I had very bad side effects, headache,fever, rash, fatigue, joints and body aches (😬they all hit suddenly all at once).
Doctor said that most likely I still have Keytruda in my system. Whatever leftover I still have in my body is interacting with Retvmo. 
He gave me a low dose of prednisone for a week it helped a lot. 

I’ve been off of prednison for a few days, I feel normal so far. Will see how things unfold 🤷🏻‍♀️.  

[jack14]

Glad to hear that you are better May. I had a nightmare, over the weekend with excrutiating pain and tenderness in my lower left abdomen, nausea and loss of appetite. I took some Citrate after calling the nurse and it opened me up and it seems better now. At least I can walk and the nausea is gone. I wonder if this is  a common side effect of Keytruda? I had my first infusion ten days ago.