Stage 4 Cancer

[rrrksr6kid]

I haven't been on this site for awhile, here is the latest, I've moved from a stage3B to stage 4, I started Keytruda infusion about 7 weeks ago (every 3 weeks) From everything I've read this is the latest and newest treatment and not suppose to make you feel bad, well I have felt very weak and tired to the point of having to use a cane and wondering if it's even working, it feels like the after effects of chemo which I had in 2015, I'm going to call my oncologist and see if this is normal when doing Keytruda. My daughter has done a lot of research about this drug and said she saw an article that said when you really felt this bad, that means the drug is working and a war was going on in my body with my emune system fighting the cancer cells. Any information you can give me wil be greatly appreciated, right now I feel like I'm dieing a little bit more every day I wake up, Please kelp me

[SusieJo1948]

i,m so sorry your going thru this i don,t know much about keytruda. i did 6 months of chemo had stage 3 three in lypmhnodes. i was on carpltin,taxetere and abraxzane. i know whwt i,ve heard from others. i am a 5 and a half lung cancer survivior. some of the others can explain it. sorry i wished i could have helped. i,m here if you need to talk and so are the others. Hang in there you,ve come to the right place. i wish you all the luck in the world. love susiejo

[rrrksr6kid in reply to SusieJo1948]

Thank you for taking the time to respond to my post, congratulations on your 5 and 1/2 yr anniversary.

[FtB_Peggy]

Please don't wait, but call your oncologist right away so they can assess what is going on. They would not want you to wait to call. Thank you for updating us, please take care of yourself.

[rrrksr6kid in reply to FtB_Peggy]

I called my Dr. yesterday and told him( didn't get to speak to the dr him self but his nurse what was going on and she said this was normal. he said he may bring me in for some blood work and check my hemoglobin but so far haven't heard anything, I'm seriously thinking of getting a second opinion, he seems to leave everything up to the nurses, I have a nurse advocate,I think I will call her and see what she thinks, Thank you for your reply

[Denzie Moderator Volunteer]

Peggy is right. Call your oncologist first thing in am. It can cause damage to your organs. A friend of mine was not able to tolerate it. It damaged her pancreas and her thyroid, she also developed rheumatoid arthritis as a result.

This may be fixed by something as simple as adjusting a dosage but it can also be life threatening. Keytruda was fast tracked for approval because it worked so well for so many. As a result they have not identified all possible side effects.

[rrrksr6kid in reply to Denzie]

I'm beginning to second think this Keytruda, what if it's not working and my cancer is growing, I still have 2 more treatments to do before they can do a CT Scan, and I don't think I should be feeling this weak and tired all the time, Thank you so much for your reply Denzie

[Memaw0100]

I had traditional chemo,but my best friend's husband started Keytruda a few months ago. She said his chief complaint was weakness and loss of appetite. He even fell and broke his shoulder, but since his scans show shrinking tumors, they are sticking it out. Good luck and God bless!

[thila]

Hi rrrksr6kid, I don't have experience with Keytruda, but I did go through a period when I was so tired that it took me forever to drag myself out of bed or to do anything. Turned out my hematocrit (blood) was low and had low potassium. On top of that, I was having a lot of diarrhea at the time due to the drug I was taking (Afatinib). The clinic scheduled me for a blood transfusion. I felt better soon after. Your tiredness may just be side effect of the drug you're on, but I agree with others here that you should get your labwork done as soon as possible so that you can get treated if it can be easily fixed by something as simple as a blood transfusion or getting supplements. Don't be shy about bugging the doctor about this. I have been known to just show up to the clinic before when I was feeling awful (I was in the building anyway seeing a different doctor at the time), and a nurse practitioner saw me. Seriously, if you showed up, it would take the doctor 2 seconds to order your bloodwork done. You might feel weird about doing that, but when you feel this bad, don't feel shy about it!

[FtB_Peggy]

If you are considering getting a second opinion (never a bad idea) please see: freetobreathe.org/lung-canc... and scroll down to "Getting a Second Opinion"

[bobby7mc]

My wife was diagnosed with stage 4 nsclc in January . She told me that it felt like things on the inside of her were moving around. She was in a lot of pain. I have nothing but good things to say about Keytruda. tumor on her kidney is not detectable, tumor on adrenal gland, also non detectable.. great results after 4 months. Thank You Jesus

She is in pain. has lot of nausea but, we were told that she would not be here this summer .. we needed a miracle .. Thank You Jesus

[ThePurplePlace]

I found Immunotherapy (Opdivo) to be very fatiguing and learned that is one of the most common side effects and one that most patient's complain about. It really wiped me out and I felt like I needed to sleep more than ever. I know for many they consider it much easier than chemo, but that was not the case for me, while on Opdivo. I had fatigue, nausea and often felt like I had the Flu without a fever. Later I had GI issues and terrible belly cramps at times. I also become hypothyroid while on Opdivo and no take a low dose thyroid med.

Please ask if your team is now doing routine Thyroid testing, as this too is a very common and well known side effect and thyroid issues can also add to fatigue. There are MANY potential side effects and it's very important to report them all. Muscle and Joint pain are also one of the known side effects, and I experienced that as well. These drugs are still considered very new and we are still learning about all the side effects that they may cause. I was given a long checklist of all the potential side effects and told to report any of them and when to "call" versus talk to them at my next infusion. I kept the checklist in my fridge and also went to the website for more information. Keytruda also has a website for patients too.

On the Upside, Opdivo worked amazingly well for me and I've now been "Stable" and off treatment for 22 months and counting, it'll be two years in August. I feel it saved my life and was well worth it. I am Stage IV NSCLC and had significant progression after chemo, which is why I moved on to Opdivo in December of 2015. I was on it for 9 months - through Augusts 2016 and as I said, had great results. It was never easy, but now I'm so glad I tried it and that I had such amazing results.

Good LUCK!

Lisa

[Hidden]

I too am so sorry for your pain and suffering. I will send up a prayer for you and your daughter. I'm glad your daughter is doing research. It helped me a lot to learn about my diagnosis and medications. I have stage 4 non small cell Metastatic lung cancer. I encourage you to keep fighting.

I wish you Peace, total and complete healing in the mighty name of Jesus!

May God Bless you and yours!

Beverly

[rrrksr6kid]

Thank you for your prayers