Immunotherapy: Keytruda (pembrolizumab)
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.
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
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.
@cindylb- It is so good to hear of a respite for your husband, and that you are doing well.
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.
@cindylb, checking in. How is your husband doing?
Thank you Colleen @colleenyoung for these great resources. This helps a great deal. I wasn't sure if I was on the right track here, guess so.
Hugs
Hi Merry @merpreb Nice to hear from you. I sure hope you DON'T have Covid (like all of this wasn't hard enough, right?) Hugs to you. Hope you got some rest too. I've been so busy I haven't really updated on here. My husband has been in palliative/supportive care for about a year now and it helps a great deal. Somewhere between full chemo and maintenance chemo there was a disconnect. We have an extremely hard working, sharp oncologist who got all of it in place. We also have a wonderful palliative care doctor and weekly nurse visits. I think the breakdown was somewhere with the nurse not getting my screeching over to the doc in supportive care. We're on track now as I went back to our oncologist who got the cardiologist on board and they have confirmed he has Afib now from the treatment. The real bugger on all this...........the Keytruda wasn't actually working turns out, so the chemo and radiation worked but not the Keytruda/Immunotherapy. Very disappointing but also this 'break' to rebuild his health after chemo has turned into all cardiology all the time and now we have that on our plate as well. You know how the brochures on drugs and treatments work.....'rare' side effects, rare only if you don't get them I guess. Thank you for your support. Moral of this story is....not matter what support you have you still have to advocate all the time (I should have screeched sooner and louder), sigh. p.s. Keytruda works so well for so many, this really isn't all that rare but shouldn't discourage others from trying this treatment. It gives many, many patients more quality time.
Hugs
THANK YOU!! We've confirmed that my husband has serious heart problems (as of today) due to immunotherapy. Sigh...........
@cindylb, cancer treatment-induced heart disease does happen. There is a discussion on Mayo Clinic Connect dedicated to it here:
- Cancer Treatment Induced Heart Disease https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/
In fact, many major cancer centers have clinics specifically dealing with cardio-oncology. Mayo cardiologists published this paper on the topic back in 2014
– Evaluation and Management of Patients With Heart Disease and Cancer: Cardio-Oncology https://www.mayoclinicproceedings.org/article/S0025-6196(14)00475-3/pdf
The cancer education team also posted a related blog and video here on Mayo Clinic Connect. See
– Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/
Might there be a Cardio-Oncology clinic at the hospital where your husband is treated?
@cindylb- Cindy, hi. I haven't been feeling well so I took a bit of time to myself. I'm going to get retested tomorrow for covid. So, your husband's doctors have finally have decided on his primary cancer. I know that it's been a long road for you both. You both must be exhausted from it all.
The way that immunotherapy works are to stimulate your immune system in fighting cancer. However, sometimes your own immune system overreacts and fights too hard and causes more problems and side effects. Immunotherapy is a Godsend for many people but for others, it can be pretty rough.
Here are side effects from Keytruda:
https://www.drugs.com/sfx/keytruda-side-effects.html#:~:text=Side%20effects%20requiring%20immediate%20medical%20attention.%201%20Bladder,8%20clay-colored%20stools.%209%20constipation.%2010%20cough.%20
It's a pretty long list and can be very intimidating. And doctors can be too. I would suggest having his Cardiologist contact his Immunologist. They should all be working together for your husband's well being. Do not let them work alone. Your husband needs a team. And perhaps a palliative one now.
Do you think that you can go ahead and begin this process?