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Helpingmom

Keytruda

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My mom was diagnosed with NSCLC and was approved for keytruda. She has a small tumor in her lung and an even smaller, hardly visible one in her liver. Everything else came back clear. The keytruda will be her first treatment. What can we expect from this? Side effects?  I know all cancer is different ,  but I would love to hear from someone who has taken it. Is it  even possible this could shrink her liver tumor so they can operate on her lung or lead to remission? She is obviously stage IV so I know it is very serious and I'm worried about how much time I have left with her.

My other question is, they never told her the size of the spots in her lung and liver. This may be a dumb question, but do the size of these matter at all or give any indication how advanced it is? She doesn't ask any questions during appointments so I'm trying to learn as much as possible. Thank you in advance for any help you can provide . 

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Keytruda Experienced Forum Members - Please sign on and give Helpingmom your experience with Keytruda.

Helpingmom,

To your second questions about tumor size: I'm sure size matters but I recall your mom's were very small (I believe 2 - 4 mm if memory serves).  The Stage IV diagnosis results from having a primary tumor (in her lung) and a distant metastasis in her liver.  I think location trumps size.  But, treatments are changing rapidly.  Just a month or so, a forum member reported her radio oncologist was going to treat small tumors in each lung with SBRT radiation.  She is Stage IV also and normally SBRT is confined to addressing a single tumor.  Be sure to ask your mom's oncologist if this treatment may be available to your mother if Keytruda doesn't have an affect.

Stay the course.

Tom

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Hi, I haven't taken Keytruda but am on opdivo and they are very similar. First off, your mom is stage 4 because it has traveled to another organ and at this time the standards of treatment is no surgery. BUT do not let that get you to far down because immunotherapy can get rid of the cancer or keep her stable for a long time. Everybody experiences different side effects at varying times and severity, no two are really the same. When I first started immunotherapy I had a runny nose and eyes for about 3 hours every morning, after about 6 weeks this went away, then I had knee pain, again this later went away. Now at almost three years of taking immunotherapy I am experiencing fatigue and I am cold all the time. I can't wait for this to subside also. Severe heartburn hit at about a year on the drug so I take over the counter Zantac twice a day. Others have has rash that sometimes itches, diarrhea that required medication to calm down. A few people gave had fevers and flu symptoms after their infusions for about four episodes then it went away. Things to report: ANY shortness of breath, abdominal pain, diarrhea. Good luck to your mom.

 

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Helping mom,

In April I was diagnosed with stage 4 nsclc which had spread to the spine. I have had 2 Keytruda infusions with fairly minor side effects (slight nausea, fatigue, constipation). My third treatment is next Monday, after which I will have an MRI to see if it is working. ?? The radiation treatment for the spine had far worse side effects, esophageal spasms. Scared the daylights out of me! I have high hopes that the Keytruda is working.


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Wow! Thank you Suzanne and Woodburn for your replies also. My mom is such an active, positive person so I was hoping the side effects were manageable. Your posts help me a great deal and give me a little more hope. I will be praying for you both and look forward to your updates on your successful treatment!

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HI there!

I had Keytruda for almost 2 years in another cancer life.  I found the side effects very manageable.  The first few days afterwards I would be tired and have those dreaded "flu like symptoms" achy, and just not right feeling.  But then after a few days I'd be fine again.  I worked throughout my treatment, and traveled sometimes.  I have friends (in my other cancer world) who stopped keytruda because of side effects but then found that it went on working.  

Because keytruda uses your immune system, side effects are different for each person.  So it's difficult to get a what's normal on the drug.  But the key is to be in close contact with your doctor, and don't let anything get out of hand.  If something seems alarming (joint pain, headache, GI issues) give your team a call.  There are ways (usually steroids) that will help.

As I understand it, a low tumor burden is good for keytruda.  It also takes a while to kick in, and your mom may have a psudo-progression where it looks like her tumors are growing,but it's really just your immune system attacking them.  So you'll need to give it time and be patient with the patient.  

Hoping and praying that Keytruda does it's work for your mom!

Shalom,

Julie

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Thanks so much for the information, Julie! Being able to work is very important to my mother, so I'm glad to know that may be possible for her. She also has a short cruise planned for the fall so I am really hoping she can still do that even though I'll worry every second she is gone . 

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Mom had her first round of keytruda yesterday .  she said she was very tired yesterday and this morning and she felt aches and pains . She seemed much better this afternoon. Praying this works! I'm wondering if the side effects will remain mild or get worse as she has more treatments. I was also wondering how many treatments she will have before they do a scan?

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I can't answer about Keytruda specifically because I never received the drug. It is also an immunotherapy drug and it's side effects may be substantially different from conventional chemotherapy. 

Can someone with Keytruda experience answer if side effects change in nature or intensity as treatment progresses?

Stay the course. 

Tom

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I had about 24 treatments of Keytruda and found that the tiredness and wretched "flu like symptoms" go away after a few days to a week.  The only thing that I found was cumulative was the joint aches and pains and I wish I had gotten on that sooner (hindsight!).  Watch for a GI issues that don't stop, a brain piercing headache, and joint pain.  And of course complain, err, I mean tell :wink: your mom's medical team about everything.

I'm not sure how long they'll wait to scan your mom. but Keytruda often presents a pseudo-progression at first.  So on early scans it looks like the tumors are growing.  This is alarming, but fairly common for Keytruda.  I have no idea if this is medically correct, but I've envisioned my immune system attacking the tumor and surrounding it, thus making it bigger. So I'd guess that they'll wait a little while 4-6 rounds before thinking about scanning. 

Shalom,

Julie

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My mom had her first scan yesterday since starting keytruda treatments. They told her not to expect anything to shrink, but to hope the cancer has not grown since her last scan. Praying so hard right now for her!

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My thoughts are with you and your mom.  I hope her scan shows positive results (no growth or shrinkage).  My mom just had her first round of Keytruda w/Chemo cocktail last Friday.  I hope that you are able to share any updates with us throughout her treatment as I am sure it will benefit many on the forums. As a fellow caregiver, I hope that you are finding ways to care for yourself in the face of all of your stress.  Take Care!

 

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Helpingmom,

I was just thinking - Is your mom also doing a chemo "cocktail" with her first 3-4 doses of Keytruda?  According to my mom's oncologist, at a national cancer convention last month, they (I'm assuming the Keytruda people involved with research) announced that mixing Keytruda with Chemo increases the chances of treatment "success" from 30-50% to 55% for people with PD-L1 mutation.  I'm not sure if it's the same for EGFR or ALK mutations.  If you are interested in what chemo "cocktail" my mom is on, let me know - I don't have the information with me at work.

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Her doctor did not recommend anything else at this point. is that a bad sign? she won't let anyone go with her to appointment's and won't even consider questioning her doctors which is so very frustrating  and I'm left guessing on questions like that 

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Hi everyone, hoping this may add more info for you all. I have stage 4 nsclc adenocarcinoma with mets to bones (spine) diagnosed in March. I started radiation and Keytruda in April so after 3 treatments had a scan. The lung tumor size reduced by 30%. The lesion on my spine is stable. Every 6 weeks I get a shot of xgiva for bones. I feel tired for a week after treatment and at this point the really bad reactions seem to be done.
I thank God every day for this and pray it continues. I also pray that you all have such a good reaction with this treatment. Please keep me updated.
Suzanne


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My dad just started on Keytruda this past Wednesday for his Stage IV NSCLC. (7/19) Other than some pain where he has some tumors that spread to the bone, he feels fine. The pain from his tumors does get worse at night and he gives in to using vicodin then, but he is able to carry on with his day like normal.

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Helpingmom-

I don't think that the doctors not recommending anything else for your mom's treatment at this point is necessarily a bad thing.  People have great results with Keytruda alone and if your mom is one of those, it's great for her not have to do chemo.  It is always a possibility to add down the line if the results from Keytruda alone is not what they are wanting.

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Has anyone heard of or had some confusion after keytruda treatments? she had a treatment on Tuesday. she usually feels really tired and a little nauseated for a few days after. the other day though she seemed very confused. she hadn't eaten all day so I got her dinner and she seemed fine after that. today the same thing but Thursday and Friday she seemed normal. I don't want to freak out if this is common, but I am worried.

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