Keytruda : My pet scans in January and... - Lung Cancer Support

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Keytruda

debi_babtkis profile image
6 Replies

My pet scans in January and May showed two new tumors, after being in remission since last July. I'll be starting Keytruda next week. Has anyone here had it and what can you tell me about your specific side effects?

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debi_babtkis
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Patti72 profile image
Patti72

So sorry to hear this. I rebuke the evil monster who rears his head again! Satan begone! Lord hear our prayer😔

Ruthie1950 profile image
Ruthie1950

I am so sorry for your news. I have not used Keytruda but in talking with my chemo doctor, he highly recommends it. Read up on the side effects so that you will be informed and prepared to face the coming months.

God bless you.

ThePurplePlace profile image
ThePurplePlace

Keytruda is one of the (3) FDA approved "Immunotherapy" drugs and I know of many LC patient's who had been or are on this or one of the others including myself. I was on Opdivo, which is very much like Keytruda (except that you do not need a high PDL1 Expression to use it). The both work very much in the same way - and they are many people who have very good results, however, like all meds, they can work differently for each of us and some people also have more side effects. I am very lucky that Opdivo has worked very well for me and I am currently NED and I have now been battling Stage IV NSCLC for just over two years! I had been chemo (Carbo and Pemetrexed) prior to Opdivo and had done well on that for some time, I had also been NED while on chemo, but then had progression, so they then did radiation and put me on Immunotherapy. My tumor is not operable due to it's being too close to the Pulmonary Artery and my PDL1 was not known, (was not a standard test then I was diagnosed in March of 2015) - so that's another reason my Oncologist picked Opdivo (versus Keytruda for me).

Some patients find it easier to tolerate (side effect wise) than Chemo, but we all different and Immunotherpay also has it's own unique side effects, some of which can be quite serious - again, like all medications. When you start treatment, you'll be provided with a long checklist of things to be watchful for while on Keytruda and what or when you need to report to your Oncology team. The most common side effect is fatigue and and overall flu like kind of feeling (achy) etc. I did had a lot of fatigue, also nausea (but way less than on Chem), and that overall "flu" kind of feeling. I did great for the firs 5-6 infusions and then the side effects set in. I also developed "low grade" Pneumonitis, which is another side effect of Immunotherpay meds and they had to stop my treatment, thankfully it never became severe or required me to need Steroids. However, I did get it three times, and have now been "off" treatment for many months, but am doing well and had been stable for a long time. I have CT Scans and labs every 90 days.

Here is a link to Merck's website - keytruda.com/non-small-cell... (they are the manufacturers) and you'll find lots of info there. Keytruda is also the ONLY one of the three that is now FDA approved as a first line treatment for some patient's with a high PDL1 Expression. Merck has recently starting airing a TV commercial about Keytruda, so more and more people are now hearing about it.

I hope you'll do well with it and not have any issues with side effects. Good Luck!!

debi_babtkis profile image
debi_babtkis

Thank you for the information and for sharing your story. I'm glad that you are doing well.

I will update once I start the Keytruda and let everyone know how it's going.

🙏🙏🙏

ThePurplePlace profile image
ThePurplePlace in reply todebi_babtkis

I hope you'll do very well! Take care and best wishes...

kate93105 profile image
kate93105

Dear debi_babtkis,

Good morning. How are you today? I have been on Keytruda since November 2016. A little history - In 2013 I had a double mastectomy due to breast cancer DCIS. No further treatment was needed. I had a breast reconstruction about 1 and 1/2 years ago. In 2014 I was very sick with symptoms of the flu or pneumonia. I went to Urgent Care and was given a chest x-ray. The doctor there saw nodes on both lungs. I was referred to oncology for further testing.

After CT Scan and MRI it was discovered that I had one nodule in my left lung and two in my right lung. The left lung was inoperable due to it being behind a artery. I started chemotherapy and also had radiation to my brain. My experience with chemo was not very good. Lots of nausea, bowel problems, lethargy, sleepiness (all day)...on and on! I lost my hair twice. I am lucky that it has grown back in.

After my third recurrence of small cell lung cancer, I was given the opportunity to be put on Keytruda. Merck, the maker of Keytruda, even called and told me they wanted to put me on it. My symptoms so far are sleepiness, dizziness, and itching (not severe) mostly around my eyelids, ears, scalp, and a slight rash in the very beginning. I don't use anything for the itchiness since it is very light. I may be given a break in treatment this July if I continue to do so well.

You might want to go to the Merck website and read up on Keytruda. There is much information about what to expect from your treatment. It's a great site and easy to use and read. I wish you the best with your treatment. May you be blessed and may your prayers be heard. Love and Hugs -

Kathie

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