Hi, i am trying to find out if the dosage of Keytruda is 200 mg for everyone or after the regression patients can take half dose (100mg) . Keytruda web site also says that take it up to 24 months without disease progression. Does it mean that if there is no progression for 2 years, stop taking it?
Any advice related to keytruda maintenance plan would be great.
Insurance does not cover the expenses on Keytruda in Georgia and its getting harder for my dad.
Thanks
I too am about to start Keytruda next week. While the dosage is 200 mg, in case of complete or near complete response one can discontinue and still be in remission. There are studies where people had no option but to stop treatment due to side effects and still the disease did not come back. Also, in many places they stop treatment after 5 or 6 doses (after good response) as the cost is too high. Ideally one should take it for upto 2 years, according to the company website but because of side effects and cost, most are not able to.
The go2 Foundation (sponsors this website) has a live program tonight called the Lung Cancer Living Room. You can participate on line and get your question answered by an oncologist. Tonight the program is about immunotherapy.
Facebook Live – Watch online via Facebook Live tune in at 5:30 pm PT and ask questions online.
2. Youtube Live broadcast – YouTube
My wife was on Keytruda for 10 months. Side effects were minimal. She went on maintenance after 5 months, results had been fantastic. Tumors had been reduced by 60% , two tumors were undetectable (still not detectable) .. After 6 months of maintenance Dr. took her off Keytruda. said it was no longer working.. She had some personal issues with one of our children, She could not sleep , was very emotional, it had devastated her. She does not want to discuss it with anyone, but I believe if she would discuss this with her Dr. , he would reconsider the Keytruda.. Really at a loss here.. From my point of reference the Keytruda was great. I would tell anyone that the Keytruda was wonderful...
I believe keytruda sets something off in our immune system and so it keeps working long after the treatment ends. When you say maintenance do you mean a reduced dosage?
I hope your wife feels better in all ways.
They were only treating her with Keytruda.. The Altima was no longer used .. only the Keytruda ... That is what I was calling Maintenance .. .. She is being treated with Taxol now .. We will have a Scan late Oct . She gets Taxol once a week for three weeks then skips a week .. It has been hard on her.. She is one in a million .. She will force herself to do things that I wish she would leave alone (mowing and laborious yard work) .. She gets mad if I tell her to go inside and please let me do this ,,
It is essential to her well being and overall health that she be encouraged to do that yard work. I’ve had stage 4 cancer over 8 years and I’ve been doing that kind of work around the house for most of that time.
We will often work till we are worn out even knowing that it will take us 1-3 days in bed to recover. It’s important to our self esteem that we contribute. Contributing helps overcome depression. We don’t go through hard treatments like chemo and radiation to sit in front of the tv waiting to die. We do it because we want to live.
Participating in normal activities adds value to our lives. So much of our autonomy and control over our lives has been taken away and this is her way of taking some control back.
You are a wonderful man and caregiver for wanting to protect her this way. I understand, I acted much the same when my mom was diagnosed with lung cancer. Now that I’m the patient I understand what that meant to her. Give your wife the gift of life. Help her make it possible to be a partner in every sense of the word.
HI Ina3,
Just wanted to share my thoughts and experiences with Immunotherapy treatment.
This is the most current Prescribing Data that Merck has established for KETRUDA. (This is as of April 2019 and it has changed over time since the drug was first FDA approved).
KEYTRUDA - Recommended Dosage for NSCLC
The recommended dose of KEYTRUDA is 200 mg, administered as an intravenous infusion over
30 minutes every 3 weeks until disease progression, unacceptable toxicity, or up to 24 months in patients without disease progression.
Source: merck.com/product/usa/pi_ci...
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As for the long term use, there are patients who have been on Keytruda for longer that 2 years. The two year dosing guidelines is something this is relatively new. I was on "Opdivo" (Nivolumab) another Immunotherapy drug, much like Keytruda and I know some folks who started in Clinical Trials and they are still on it today (some for almost 4 years). When we first started these drugs there was no "end" date known, we expected to be on as long as it continued to work, and did not cause any adverse side effects.
The immunotherapy drugs are still considered "new" and the Oncology world is are still learning from those who were in the clinical trials and those who started on these treatments, shortly after Immunotherapy was FDA in 2015. We are still learning more and more every day and I think it's still going to take many more years before we know just exactly what is the best time frame to stay on Immunotherapy treatment.
It will ultimatley be up to your Oncologist to determine just how long you stay on and that will also greatly depend on your response to the treatment and any potential side effects. Many now feel that two years seems to be appropriate, especially for those who reach NED (No Evidence of Disease) or even Stable illness. This too greatly depends on how you react to the treatment.
I also know some people who have had their dosage and/or the infusion schedule adjusted over time and that too has been determined by their responses. ALL the patient's who had their doses lowered or moved out to monthly etc., had that done to help deal with the side effects. and ALL were seeing good results.
I can tell you that I had a truly wonderful and remarkable response to "Opdivo" after only 9 months of treatment. It worked amazingly well for me and I started seeing positive changes on my very first Scan. But, I also had a variety of side effects and ultimately after my third bout of Pneumonitis (a known side effect), my Onc decided to stop it permanently. By that time, I was Stable (I am now in Remission) and have been OFF it, (and all treatment) since August 2016 (three full years with no treatment). I have Stage IV NSCLC (diagnosed) in March 2015.
I also have other NSCLC friends who were on Keytruda (or Opdivo) and started around the same time as me, (mid - late 2015). One women is still on it (four years and is still in a Clinical Trial), she is thinking about stopping now due to recurrent side effects, but she's scared to stop because she has been on it so long. She also has not reached NED, so I understand her concern and up until recently has only had very minimal side effects. ALL the others that I know, were taken OFF because of side effects and were by then Stable or NED. We are all doing well and have been "off treatment" for 1-3 years. Many are still having (or are still in treatment) for side effects that arose during their treatment. ONLY the patients who had progression have moved on to another type of treatment.
It really is a question that is very difficult or pretty much impossible to answer before you start treatment. Length of treatment can also vary by Oncologist, some are allowing patients to stay on "longer" than two years, especially those who are NED. Personally, I don't think I would want to stay ANY longer than two years because of the potential side effects, especially knowing that in some cases, side effects start AFTER a patient has ended treatment and some do not resolve when treatment has stopped.
I wish you the very best and hope you will have excellent results! I will also continue to follow patients on Immunotherpay to see how they do and always hope for the best possible results. I consider the Opdivo to be a life saver and feel 100% confident that it saved my life and I would not be here now, if I had not tried that treatment. I am also a member of the Lung Cancer Registry and hope that the data we input to the Registy will help others down the road. For more info on the Registry, please go here -- lungcancerregistry.org/
Take care and be well,
Lisa
Lisa,
Thank you very much for such an extensive information. My dad has been on it almost a year and no side effect at all. We mostly try to reduce it due to expensive treatment. Last two scans showed the regression. He is going to do another one end of the month. He usually goes to Turkey for scans and his doctor is there too. While they do a good job in providing the treatment, they don't provide detailed information on the status. All what they say “tumor regressed” and no new metastasis. Trying to understand when you say “being Stable or NED”, what does stable mean? No tumor at all and being like that for a longer time? Or multiple positive scans with regression. He has brain mets also and thats what I worry about even though it has been regressed too. I did not know that you can get side effects after ending the treatment. Doctor never mentioned about the OPdivo, is it for PDL1 as well?
Stable means that the cancer is not changed and that there are no new growth or tumors they can find on scans. NED means no evidence of disease, in other words when they do a Scan they don't see any signs of cancer.
I'm not sure if you're aware but Merck, the manufacturer of keytruda does offer financial assistance programs, at least here in the US for those who have difficulty in paying for the medication. You can go to the Keytruda website and apply for these online to see if your Dad may be eligible. To be honest I'm not sure how all of this would work outside of the US. They may have something similar in Turkey.
As I mentioned Opdivo is very much like Keytruda the major difference is that it's used as a second-line treatment after someone has already been on chemo or targeted therapy and then had some type of progression. It's another checkpoint inhibitor but a high PDL1 status is not required to use it, as it is with Keytruda. it's also not FDA-approved as a first-line treatment.
if you go to each of the manufacturer's websites you can find a wealth of information about all the potential side effects as well as data on long-term side effects and the potential for developing them even after treatment has been stopped. I was provided all this information before I was put on Opdivo and giving several booklets and data sheets from Bristol-Myers that told me all this information.
Both manufacturers also have patient assistance where they can set you up with a nurse type person to speak to while you were on treatment and those you can find on the companies websites.
It sounds like your Dad is stable but typically as I said they would not stop his treatment unless he was having side effects and if he's not I don't expect that they would want to stop him until he says no sign of Cancer and even then they still like to go for the two full years.
You can certainly talk to his Oncologist about lowering his dose potentially and also changing the dosing schedule, I'm not sure how that would work especially for a patient who is not having any side effects. I'm guessing that his doctors would not want to necessarily do that if he is doing well with the treatment.
I'm not sure how his insurance works or why it's not covering most of his treatment. I guess the only thing you could do is talk to Merck and see if he might be eligible for one of their assistance programs.
if you go to the Keytruda website I'm sure you'll find a lot more information that may be able to answer more of your questions.
Best wishes
Lisa
Keytruda and the side effects
Keytruda Joint Pain 
7 days after chemo treatment 
