Immunotherapy: Keytruda (pembrolizumab)

Posted by ina3 @ina3, Oct 30, 2018

Hi,

My name is Ina and i am writing on behalf of my dad who was diagnosed with lung cancer- adenocarcinoma 3 months ago.

I live in Washington DC and my dad lives in country Georgia.

Since I joined this forum, I learnt so many things, reading some of the stories gave me hope and I hope that I will be able share the story about my dad with positive results soon.

Since I cannot bring my dad here in the USA, I am trying to get a second opinion on the treatment that he was given. I would appreciate very much if you give me some information and advice.

After the genetics test we were told that
ROS-1, ALK were negatives but PDL1 expression is positive and MSI-is High. These results means that they can not use targeted therapy but they can use immunotherapy with chemotherapy;
Doctors advised Pembrolizumab(keytruda) 200mg+ karboplatin+ pemetrexet /ever 3 weeeks
And with pemetrexet, we mus take folic acid vitamin and B12

The treatment will be repeated every 3 weeeks and untıl 6 th cycle.

I am interested in side effect too. For how long the side effects last usually? I worry that with both Chemo and Immunotherapy every 3 weeks he wont get a break practically and the side effect being severe.

Thank you again.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@ehb999

Did you have Chemo as well?

Jump to this post

Yes, my treatment is Carboplatin and Alimta plus the Keytruda! Just had a scan today and we will find out the results tomorrow when I have my next treatment. I hope your dad is feeling good.

REPLY
@schmeeckle64

Hi! I am also on the same treatment. The first round I was nauseated and had the dry heaves. I talked to my oncologist and he put me on a drug clled Varubi for the nausea. It was a miracle drug. The second treatment was super smooth other than being a little tired. I hope this information helps!
Take Care!

Christie

Jump to this post

Did you have Chemo as well?

REPLY

Hi! I am also on the same treatment. The first round I was nauseated and had the dry heaves. I talked to my oncologist and he put me on a drug clled Varubi for the nausea. It was a miracle drug. The second treatment was super smooth other than being a little tired. I hope this information helps!
Take Care!

Christie

REPLY
@freda73

They are starting my husband on keytruda immunotherapy this week but he had kidney and 2 lymph nodes removed pet scan was clear but they are asking him to do immunotherapy every 21 days for a year. Is that necessary even if there is no visible cancer cells?? I just think it’s excessive for not having any visible cancer . Thanks

Jump to this post

how is you husband doing?

REPLY
@schmeeckle64

I am on Keytruda since January 2019. My last scan showed the cancer on my liver and lymph nodes is gone and the cancer in my lung is shrinking. I pray and pray that I don't have to ever do chemo. It's hard to stay positive but it truly helps.

Jump to this post

what side effects have you experienced?

REPLY
@2onlow8

@richcolleen I am in same situation as you, just had my 3rd infusion of Keytruda added to my 10th Alimta (Chemo) treatment. Trying to keep cancer from growing, and it has slowed progression, and I should find out if it’s all stopping growth in a few days. I too am now out of commission 7 days out of each 21-day cycle. Have you discussed with your oncologist what the next step would be when current treatments stop working?

Jump to this post

They are starting my husband on keytruda immunotherapy this week but he had kidney and 2 lymph nodes removed pet scan was clear but they are asking him to do immunotherapy every 21 days for a year. Is that necessary even if there is no visible cancer cells?? I just think it’s excessive for not having any visible cancer . Thanks

REPLY
@cindylb

Hello - I haven't been on the site for a while because caretaking for my husband has been very busy and challenging. I would like some feedback on Keytruda side effects if there's anyone here who can share.

My husband was diagnosed almost four years ago with a "Cancer of Unknown Primary" that they have now opted to call Lung Cancer. The cancer is behaving much like lung and the main tumor first appeared in his lung and lymph node central in his chest. Multiple biopsies were inconclusive as to type so we've had to proceed with 'possible lung'. The cancer remained stable for three years and then spread to his hip and spine and grew around his bronchi, cutting off his ability to breath easily (he also has COPD). We used marijuana up to this June and it was holding things at bay or they simply weren't growing. In June we did five rounds of radiation to the center of his chest (it worked with few side effects). We followed with chemo and immunotherapy (Keytruda). The chemo was pretty brutal for him with multiple expected and some unexpected side effects (nausea, diarrhea, fatigue, etc). The uncommon side effects were blood in the urine and fainting. When we switched to maintenance therapy with Alimpta and Keytruda my husband actually got sicker, with more side effects. We have stopped treatment until March when we'll repeat a PET scan. We've had to stop because our last PET showed the cancer has now spread to his adrenal glands, a new tumor has appeared in his lung and an additional lymph node is now showing cancer. So, all in all, it worked for about 3 months and then stopped working and he's been quite ill for the past 11 weeks.
Here is my question - My husband has developed a heart problem which is being tested with a 30 day heart monitor. Oddly, I was the one who questioned his heart function (not supportive care, not oncology, etc). He had a pulse of 180 for two days and now has either Afib or Tachycardia or??? He had no serious heart problems previously. My research shows that Immunotherapy (specifically Keytruda) can put some people at risk for serious heart disease. I'm wondering how to broach the subject with oncology, as they are acting like it's no big deal.
After all we've been through with the doctors being unable to diagnose or treat the cancer and now putting him on a cancer treatment that isn't working and really had no upside and now we are fighting a heart problem...........what to do? Has anyone else experienced heart issues on immunotherapy and does anyone know a good resource to see if the heart condition might improve once the immuno has left his system or if this is now another permenant problem

After weeks of my reaching out to doctors about his not feeling well, it was me who called and got cardiology involved and it only took 12 hours for the cardiologist to realize my husband had a serious heart issue. I'm lost all faith in doctors but since I'm not one (only play one on TV), I need them and I'm not sure how to proceed.
Sorry this is so long. I appreciate anyone who gets to the end of it (ha ha) and has any advice or information that might help me navigate this latest debacle.

Hugs to all

Jump to this post

Cindy, My husband has NSCLC and the AFIB was one of his earliest symptoms, other than the horrible cough. He had the 30 day monitor and an Echocardiogram. The results showed AFIB but an otherwise healthy heart. In his case the Tumor was pressing on the artery to the heart and his airway, the compressed artery was causing the AFIB. Not saying your husband has the same situation but it is a possibility. My husband has finished radiation, almost finished with Chemo and will follow up with Immunotherapy. I know it’s a scary time for all of us and I wish you both better days.

REPLY
@cindylb

Colleen - so good to hear from you and thank you for checking in with me. First, I hope you're doing well. The past year has been so hard for everyone. Do send me an update.
My husband is on a 'cancer holiday' - kind of a misnomer isn't it? Ha ha. We have stopped treatment until his next PET scan in early March and then we'll reevaluate. The full chemo, radiation and immunotherapy treatment worked well enough to push back the spread of the cancer to his bones and center lymph node and chest, which was making it hard for him to breath. The maintenance treatment of light chemo and immunotherapy (Keytruda) did not work and the cancer spread again. The Keytruda was a bit of a gamble because they still don't really understand his cancer or the type of cancer. I suppose chemo works on most any kind of cancer - the type they used treats many cancers, so............. The immunotherapy did however give him Atrial Fibrillation of the heart. It took 9 weeks to determine that he had the heart condition but the meds are keeping it under control. I guess that's the unfortunate trade off. My husband is a tolerant and tough guy and he bears it all well. I on the other hand have turned into a shrew, ha ha. We're going into year five of his cancer with no more answers than we had and no more hope and I'm tired of doctors (and I'm pretty sure they're tired of me). My health has been better this past year since I had the sepsis, so I'm grateful to be well enough to care for him, his Mom and my Mom. I'm pretty sure I'll be getting my honorary "Google Doctor on TV" award soon! Still trying to get the Covid Vaccine. It's a slow, frustrating roll out here in Colorado (perhaps other places too). Hopefully in the next couple of months. That will take a load off my mind. I worry every time I leave the house to run errands or go to doctor visits I'll get the stupid virus and kill everyone I know, sigh. I know there are lots of people out there who feel the same. Good news though...my daughter is engaged to a wonderful guy and provided the virus behaves, she'll get married in August........Hugs and thanks again for keeping in touch with me. The Mayo site is still so helpful for me, as it it for so many.

Jump to this post

@cindylb- It is so good to hear of a respite for your husband, and that you are doing well.

REPLY
@colleenyoung

@cindylb, checking in. How is your husband doing?

Jump to this post

Colleen - so good to hear from you and thank you for checking in with me. First, I hope you're doing well. The past year has been so hard for everyone. Do send me an update.
My husband is on a 'cancer holiday' - kind of a misnomer isn't it? Ha ha. We have stopped treatment until his next PET scan in early March and then we'll reevaluate. The full chemo, radiation and immunotherapy treatment worked well enough to push back the spread of the cancer to his bones and center lymph node and chest, which was making it hard for him to breath. The maintenance treatment of light chemo and immunotherapy (Keytruda) did not work and the cancer spread again. The Keytruda was a bit of a gamble because they still don't really understand his cancer or the type of cancer. I suppose chemo works on most any kind of cancer - the type they used treats many cancers, so............. The immunotherapy did however give him Atrial Fibrillation of the heart. It took 9 weeks to determine that he had the heart condition but the meds are keeping it under control. I guess that's the unfortunate trade off. My husband is a tolerant and tough guy and he bears it all well. I on the other hand have turned into a shrew, ha ha. We're going into year five of his cancer with no more answers than we had and no more hope and I'm tired of doctors (and I'm pretty sure they're tired of me). My health has been better this past year since I had the sepsis, so I'm grateful to be well enough to care for him, his Mom and my Mom. I'm pretty sure I'll be getting my honorary "Google Doctor on TV" award soon! Still trying to get the Covid Vaccine. It's a slow, frustrating roll out here in Colorado (perhaps other places too). Hopefully in the next couple of months. That will take a load off my mind. I worry every time I leave the house to run errands or go to doctor visits I'll get the stupid virus and kill everyone I know, sigh. I know there are lots of people out there who feel the same. Good news though...my daughter is engaged to a wonderful guy and provided the virus behaves, she'll get married in August........Hugs and thanks again for keeping in touch with me. The Mayo site is still so helpful for me, as it it for so many.

REPLY
@cindylb

THANK YOU!! We've confirmed that my husband has serious heart problems (as of today) due to immunotherapy. Sigh...........

Jump to this post

@cindylb, checking in. How is your husband doing?

REPLY
Please sign in or register to post a reply.