Starting Keytruda

Sorry you are facing this, Cyn, however – YOU CAN DO IT!!!!!!!!!!!!! The response rates and side effects for Keytruda and Opdivo are basically the same, so if you see info regarding one, you can pretty much extrapolate to the other. I took Opdivo for 2 1/2 years – 2010 – 2013 – for Stage IV melanoma (brain and lung mets) and remain NED for melanoma ever since. Clearly, I did not have to do this in the midst of a pandemic, but most cancer care centers have good plans to manage/limit exposure – including mine where I still go for follow-up. Wear a mask!!!!

As far as life in general – keep on keeping on as best you can. Side effects vary a great deal from person to person, so clearly that makes a difference as to how you manage things. Most common side effects include fatigue, rashes, joint pain, dry mouth. More complicated side effects can occur – like colitis (irritation in the colon) and pneumonitis (inflammation of the lungs that often includes cough and wheeze). Damage to endocrine glands can occur as well. We have learned a great deal about immunotherapy since my time taking it – including how to best manage side effects. Most can be dealt with fairly well and the most important point to all of this is – call your doctor if you are dealing with any problematic symptoms.

I ran and worked and took care of kids throughout my entire treatment process, missing only 3 days of work during that time. However, your mileage may vary!!! So, do the best you can. Understand, that my “runs” were often laughably slow. My joints ached and I wheezed every step of the way! BUT!! I did it! So – my best advice: Be YOU!!! Do what you do! As best you can. In the midst of this crazy pandemic. Resting when you need. Rally when possible. LIVE!!! (Check Edwin’s posts here for REAL inspo! He is about 15 years my senior and can probably run circles around me while dealing with bone mets – now resolved – on the ipi/nivo combo!!!) I wish you my best. Celeste

3c here. opvido 240mg 2x a month, 12 months. 7 months in. 64yoa.

as i tell everyone , no symptoms, no Side effect. Infusions are a breeze. I only do and actual infusion for 30 minutes. the rest is prep, usually about 1 hour all told. First there is blood work, 5 minutes. and then you will likely meet with doc every so often.. So usually your in and out in about 2 hours.

no discomfort whatsoever, minimal inconvenience..

I would take single drug immunotherapy any day over double drug simply due to the severity of the side effects. Having said that, I am on Opdivo and it is by no means a walk in the park. I have severe headaches, fatigue, joint, muscle and bone pain, neuropathy, vitiligo, flushing and other issues. They are not present continuously and are manageable, especially if you take extra medication to deal with these. I was diagnosed at 55 and will be 57 soon. BRAF status is important to see if you are a candidate for target therapy, however it is not a walk in the park either, although it is a great option to have just in case. My intention is not to sound pessimistic but to be realistic.
I did have two combo infusions prior to continuing on Opdivo, so my side effects may be more pronounced than if I was on a single drug immunotherapy.
Regardless, although you may have good days and bad days, it is manageable and possible, especially with the help of great family and friends which is something you already have.
Basically, I go in to have a blood draw, see my oncologist 30 mins later and then proceed to my infusion. I am on biweekly infusions. The entire thing takes 3 to 3.5 hrs and the infusion is open 8 a.m. till 7 p.m. Mon -Fri and also on Sat 8-4. You may decide to do the bloodwork the day prior. Either way, I found everything very accomodating and easy to set up. Soon, you will develop your own routine and what best works for you.
Best of luck and wishing you much success with your treatment.
Melanie

What I found helpful Was to know the side effects of the drugs, both common side effects and rare ones. Also I found it helpful that side effects can come and go, may require treatment or not, may require a break in treatment or not, etc. Try not to think oh no, I’ve got dreaded shrinks or whatever else you are experiencing. Just tell your doctor, see if there is a Treatment or it effects your use of the drugs.

I have a general sense of fatigue a lot. I am often helped by a nap. I took a break between combo 2 and 3 because I spiked high fevers and was hospitalized for a week. But after the fevers were managed they ended. I had another crainiotomy for the brain met. And then I immediately went back to combo 3 and 4. And then opidivo only. Yes it scary to be packed in ice in a hospital for a week. But I got over it and I resumed treatment. I eventually developed some mild diarrhea at about six. In this but it is manageable, nothing as terrible as other people have, and I can still have treatment.

Just take it one day at a time…