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Starting Keytruda Next Friday

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hello, 

following two cycles of cisplatin/ alimta we have just returned from the doctor and after reviewing a chest X-ray, he has recommended that we stop the chemotherapy in favour of starting Keyturda treatments next week. 

my dad is stage IV NSCLC with a PDL-1 greater than 50%.

The chest x-ray showed that his lung is collapsed, likely due to the tumour growing in size and obstructing the vessels. 

I am eager to hear from other people who have been given this treatment and what your experience was. 

Dad did not tolerate the chemo well, mostly extreme fatigue, not regaining energy until about 18 days. 

Surgery and Radiation are not options for him, really hoping that this therapy works for him. 

best wishes, 

Stephanie

 

 

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Hi Stephanie.  My Mom had almost the EXACT same story (surgery and radiation not options), except that they halted the cisplatin/alimta after only 1 treatment.  The chemo treatment was not working (new cancer areas appeared) and she became so weak and anemic that a transfusion was necessary. And, while her lung did not collapse, her chest cavity lymph nodes are swollen with cancer causing her much distress. She started Keytruda a few weeks back and is scheduled to have her  2nd treatment this coming Friday.  Her doc explained that the way this works, her cancer may actually appear to worsen on the next CT scan (after her 3rd treatment) before it gets better.  And, even though she continues to lose weight and feel fatigued ,  I am seeing ever-so-subtle signs of improvement ... such as the gagging cough... which previously caused her difficulty when eating/speaking... now occurs much less frequently.  I hope and pray that she is able to tolerate and continue on with Keytruda.  One good thing is that with the Keytruda, infusion sessions (from door-to-door) take only about one hour.  Also, Mom did not experience and "crash" afterwards. and side effects seem minimal so far compared to the chemo combo.  I've been doing as much research on Keytruda as possible and like me, please feel encouraged that your dad qualifies for the treatment and hopeful that he will see improvement.  I'm anxious to to hear an update from you on your dad.  Prayers for you and dad!!  Karen

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Stephanie,

My mom just finished her 6th Keytruda and chemo infusion for a lung cancer recurrence. Combining Keytruda and chemo was a newer recommendation as of this past spring - it supposedly helps the Keytruda to get a head start in getting to work. But Keytruda alone is very effective, especially if your dad has a high percentage of PD-L1 cells. 

As for side effects, my mom's mainly had side effects related to chemo. But as of the 4th dose of Keytruda, she began to have skin pigment changes in her thighs and chest - no big deal.  Who knows how much fatigue is related to Keytruda versus chemo. I can tell you that my aunt has been on Keytruda for nearly 2 years for lymphoma. She teaches the 3rd grade and is on her mid-60's...she reports some fatigue and skin pigment changes and a rash, but she still has plenty of energy to chase around kids all day.

Most importantly, my mom's treatment is working...she had a CT at the 4th infusion and her tumor had shrunken enough that they were able to remove her trachea stent (the cancer is on the back of her trachea). She was also just told that they will do a CT at the end of the month and if everything looks like they anticipate it will, she will get to stop chemo and just continue with Keytruda.

So, there is hope. There are so many new treatment options than there was just 2 years ago when my mom was 1st diagnosed. You can follow updates on my mom's journey - the post is called "Finding hope in my Mom's Cancer Journey" in the NSCLC forum.

Take Care,

Steff

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Stephanie, 

I just started Keytruda myself.  They are going to do 6 cycles to start and go from there. 

Tomorrow will be my 3rd dose, as stated in previous posts on this thread it is quick usually only about an hour for me.  The side effects have been minimal, energy is up and down but that is expected on this journey.  So far no pigment changes but do have a slight rash which is annoying at most. 

Best wishes and sincerely hope that everything continues on the positive side for you

David

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Hi Stephanie:

  My Mom started Keytruda over 3 months ago. Her treatment is every 3 weeks. Just finished the 4th treatment and we got good news and bad news. Her liver cancer--for which Keytruda has not been approved for has gone from 3.5 inches to 2.5 inches. Sadly her lung cancer has grown 3 millimeters. While not large still not what we thought the scan results would show.

Her doctor couldn't believe it especially since she scored about 71 on the PLD-1 test. The Dr feels that Moms system is just slow so we are doing two more treatments than another scan.

I have heard Keytruda is a great medicine because it helps your body kill the cancer instead of killing your body with chemo. The only side issues she has had is being a bit tired after the treatment and itchy skin.

Best of Luck and looking forward to hearing great news.

Sha

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I am currently trying to decide if I want to continue on the Keytruda.  I have had 4 treatments and so far only growth, I have now significantly lost the ability to speak in more than a whisper due to cancer pressing on a nerve in my chest.   My oncologist has informed me that my options for chemotherapy have pretty much run out due to during this 2-year fight we have gone through the majority of what is available.  I have had Optivo which worked wonderfully for a short while, on this journey I have never felt so good but then it turned and started attacking my lungs, liver, and kidneys.  I went from feeling 110% to the ICU in the stretch of 1 night.  After several weeks I was lucky that they were able to stop it.  The docs really cannot explain how they did it either.  

If anything, on this journey, fight, battle, whatever you want to call it try the meds.  They can help and have bought me precious time that I would have never had to begin with.  Hug your family, dog, best friend, make sure to smile, be good, and remember the little stuff doesn't matter it is about the journey, not the beginning or the end of it.

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David,

I do not want to try to sway you one way or the other regarding the continuance of Keytruda, but I just wanted to let you know that it is very common during the first few doses of Keytruda to see swelling and what looks like growth of the cancer.  My mom is currently experiencing this, although is not having the symptoms of swelling/growth that you are.  Her CT showed a "thickening" around the area of her tumor - on the backside of her trachea.  Her pulmonologist scoped her trachea and took 5 biopsies.  He reported seeing swelling and scar tissue, not much else.  The biopsies all came back negative for cancer.  So at this point, we are assuming a couple of things - 1) This may be just swelling due to the immune system "attacking" the area, 2) this could also be a mass of T-cells bunched up and "attacking" the tumor, 3) There may be cancer cells in the area and the biopsies did not get them.  My mom has finished her 8th Keytruda treatment (6 with Keytruda + Chemo, 2 Keytruda only), the CT with the "thickening" was after her 6th treatment.  90% of her cells have the PD-L1 mutation.

Whatever you decide, I wish you the best.  It looks like you've been on quite a journey.

Take Care, 

Steff

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My Mom had her right lung removed last Sept 2016 and we thought all was well. Her cancer came back not only in the lung cavity but in the liver. She started  Keytruda in July 2017. We did about 3 months of treatment -every 3 weeks. First scan looked great for the liver cancer went down by 1 inch but the lung cancer went up by 5 mm's.

Fast forward another 3 months of treatment and another scan.....her liver cancer has grown and her lung cancer/tumors have grown at an outstanding fast rate. She has 3 fractured ribs and a fractured vertibrate in her back.

So per her Dr it is not working and Mom refuses chemo.

She has months maybe 6 months....

I pray it works for you. But don't wait tell your Dr to do the scan at the 3 month part as our Dr did. if keytruda doesn't work get your options quick!

This is a miracle drug but I guess just not for my Mom. Her Dr was so disappointed because it should have worked for my Mom.

blessings

SG

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