Started immunotherapy maintenance: What side effects can I expect?

I have infusions in my arm every three weeks so I'm usually over the sensation of being the human pin cushion when it's time for another.

I've taken to wearing cancer themed shirts to treatments: "Straight Outta Chemo", "Cancer Destruction In Progress" and a couple of old tee shirts I had from the band My Chemical Romance. I get looks from the other patients and smiles and laughs from the nurses.

My touchy-feely is manifested itself in this new found empathy for other patients and the need -- as @dutchw said - to spread the word about the new face of cancer treatment as a result of immunotherapy and targeted therapy.

@ta52- Spreading the word is what gives hope to everyone who has cancer. That's what this site is all about. Hope that we have survived and can help others. Nothing can be more potent.

I think that people are afraid of immunotherapy because it's hard to understand and because it hasn't been around long enough, like chemo. Even the word chemo sounds familiar.

One of the best explanations of immunotherapy I've heard so far is that it is doing a CTRL-ALT-DELETE on your body's immune system and rebooting it to do what it should have been doing on its own: killing abnormal/cancer cells. And, with the potential of far fewer side effects than chemo.

Yes, I plan on telling him when we return home in April. We are currently in Arizona at our winter home with another Dr. I don’t feel comfortable talking with. I’ve noticed Mayo Clinic adheres to the Keytruda/Altima cocktail regardless of how the patient tolerates the side effects. Can a patient refuse the Altima and just take the Keytruda while being treated at Mayo?

@ta52- Haha. Immunotherapy can either depress or activate your own immune system to fight your cancer. I'm not sure if that definition is totally accurate. I've never had it. But some day I probably will.

@tats Feel positive and enjoy any and all gains you make against cancer and try not to have survivors guilt.....because as long as there are people who ARE getting better, there's always hope for even the sickest now and in the future. After all, I'm a breast cancer survivor (so far) and if I hadn't lived there would be no one to care for my husband now. What we need is more survivors.....we can't let cancer win this thing. You are a kind person. Hugs and good luck.

My Mayo/Alimta experience has been different. They have always said "since you are tolerating the treatment so well" leaving me with the impression that if I wasn't they would be ready with an alternative. I do know the folic acid, B-12 and steroid supplements are for the side effects of Alimta and you have to be pretty disciplined with those.

That is a great question and one we were exploring for my husband but alas, the Alimpta (Chemo) and Keytruda (immunotherapy) didn't work over the 12 weeks and now we're on the path to discover which thing caused his Atrial Fibrilation of the heart (chemo? radiation? Keytruda?). It's an important question because his options are now just radiation and chemo (no immunotherapy), as it didn't work. Immunotherapy ramps up your own immune system to kill the cancer cells and it's a blessing to so many. In my husband's case, they really aren't sure and have never been sure what type of cancer he has. No biopsy showed the cancer type conclusively so they had to 'guess' it was lung finally when it spread to his bones. It might not react to the Keytruda because he didn't have much PDL1 in the biopsy tissue, which is what Keytruda needs to work. Instead of killing cancer, I guess the Keytruda got bored and decided to attack his heart.....which immunotherapy can do - attack your own organs, although that is rare. Hugs to all and glad to hear this protocol is working for some...that's good news. We're still on the path to figuring out what might help my husband.
Hugs

You’re absolutely right, laughter is a wonderful medicine!!! A friend of ours made me a dumb looking head band out of styrofoam and string with my name and date of birth on it. I wore it into the infusion room and just pointed at my forehead, whole room cracked up...