keytruda

[sue2428]

HI just wanted to know if any one is on keytruda and what symtons if any they are having, my husband will be starting this treatment on the 28th and i want to be prepared for anything that might rear its ugly head,thanks

[GMC1]

Sue2428

My husband is 3 days out and is doing great. With Opdivo last year he started feeling bad right away. Fingers crossed.

[debi_babtkis in reply to GMC1]

Sue2428

I've had two rounds of Keytruda, June 14th and July 5th. After the first one I felt great for 3 days then got a horrible headache! Itchiness and muscle and joint pain. A few days later my cough got worse and caused a lot of chest pain. It settled down with some cough pills the Dr gave me. Also the fatigue was terrible.

After the 2nd round I've just had more of the same with a few more body aches and pain. No nausea or diarrhea like on chemo! My energy level is about two hours a day. I have to lie down mid afternoon for 2-3 sometimes 4 hours a day and I take pain meds 3 times a day. However my breathing issues have lessened so that's a big plus.

We're all different and our responses will be different too. Good luck and prayers to your husband 🙏

[sue2428 in reply to debi_babtkis]

thanks debi for your reply ,i know every one is different but just wanted to know what to expect if anything,heard that it gives good end results ,we just have to pray it does, hope everything works out well for you x

[debi_babtkis in reply to sue2428]

Thank you Sue and my best to your husband. Hope he is still doing well

You'll both be in my prayers

Debi

[Hidden in reply to debi_babtkis]

I agree with that, different people react differently to the same treatments, but the bottom line is, does it work? we have to look at the long term effect.

A little pain now is a small sacrifice , for the greater good.

[GMC1]

Interesting to hear about sodium levels. Do you add more salt in your diet?

Last year my husband was in ICU after 2 Opdivo infusions. No one said anything about sodium, but now I wonder!

[ThePurplePlace]

I was on Opdivo (much like Keytruda) and my main complaint was the intense fatigue. It did not start right away, but once it did (around infusion # 6), it was awful. I needed to sleep in every day and also found I needed naps and went to bed early. I also had some nausea and lost my appetite. I often felt like I had the flu, (aches/pains), weak and tired -- but without any fever of cold-like symptoms. I also developed low-grade Pneumonitis (which was asymptomatic and found only on my routine CT Scans). I did have to stop Opdivo three times to allow it to clear and then last August, it came on after my first Infusions, back on treatment, so they stopped it again. Luckily, I have continued to do well and have been "off treatment" and Stable for almost 11 months now. Opdivo worked VERY well for me and was well worth the side effects I experienced. I have Stage IV NSCLC and when I started it I had a aggressive progression, just two months after I had reached NED while on Chemo.

We are ALL different and we all react different to the treatments, so there is no way to know how your Hubby will do? Once he starts Keytruda they will provide him with a long checklist of the potential side effects and if/when he needs to call his Onc. All the Immunotherapy drugs have the same basic side effects. Many people actually find it much easier than Chemo. Again, we are all different.

I'm so thankful that I had such a good response and if/when I should ever have any progression, I do HOPE very much that Immunotherpay will still be an option for me, even if not Opdivo, possibly Keytruda or Tecentriq.

Good Luck,

Lisa

[GMC1]

I have not heard of Tecentriq, is it also an immune drug?

He has gotten through the second week with even more energy than before. Fingers crossed.