Introduction and gratitude - looking for keytruda users

[Spagano5]

Hi all and thank you in advance for the information and support. My 74 year old mother was diagnosed in June 2016 with stage 4 NSCLC. (Adeno-C, no mutations) upper left lobe tumor with a small lesion in the brain.

Because the objective of care was palliative she did not take platinum based chemo and instead went on Alimta (only). She had targeted radiation to the brain (cyberknife) 

Oct scans were stable, additional scans in December showed progression. Lungs and now liver.

She just started keytruda this week. Her pDL =80%

She's quite frail and sleeping a ton.  I would be interested in hearing from others on Keytruda. I have done all the research and hear promising things but fear her cancer has spread too much/too far.  Just looking for any hope or inspiration here.  

 

Thank you all so much

stephanie

 

[Jg_miller]

I was diagnosed with stage 4 non small cell lung cancer 1/13/16. I had 10 sessions of radiation for cancer in my hips and 6 sessions of taxol/carbo. The hips are healing and the pain is minimal. CT scan showed the tumor on my lung and the tumor on my sternum had both shrunk. My oncologist was very happy with the progress.

I started Opdivo in June. All scans have showed no new growth and no new cancer. The side effects are minimal. Overall muscle aches at times and some fatigue, but I can live with these effects.

After my last treatment of the platinum base chemo, I developed peripheral neuropathy in my feet and taking gabapentin for that side effect.

Jennifer

[LaurenH]

Hi, Stephanie,

Welcome to LCSC. My name is Lauren and I am the Digital Community Manager for LUNGevity. I'm glad that you've joined this community and hope that you can make many meaningful connections with other caregivers and survivors. I'll encourage our members who have experience with Keytruda to respond to your post. In the meantime, please feel free to explore the discussion boards and blogs. Everyone LCSC member's story is different, but this is a great place to find inspiration and hope! 

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Woodburn9]

Hi, I'm am not on Keytruda but am on Opdivo. There are very similar, they attack the same part of the cancer. With your mother having a high level of PD-1 expression she has a very good chance of this Keytruda doing her some good. Watch her for shortness of breath ( inflammation of the lung lining) upper abdomen pain ( inflammation of the liver) severe diarrhea ( inflammation of the bowel) and report ANY symptoms she has to her doctor. Remember that where ever there is life there is hope. When I started on immunotherapy I had tumors in my right lung, chest, abdomen, right and left adrenals, by my spine, muscle of my butt, and in my breast. I now have 1 tumor in my right lung that has not grown in a year and a half and no other tumors. So she is not to far gone. Best wishes to you and her, keep us posted.

[Tylalla]

Hi Stephanie

I have just started on Keytruda. So far my only side effect has been fatigue. I nap pretty much every day. I have stage 4 NSCLC with mets to my kidney, pelvis, spine, some lymph nodes and 2 nodules in my lung. I was tested and I have a high PDL-1 expression so I'm hopeful the Keytruda will work great. Best wishes to your mom!

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[Spagano5]

Hi Stephanie

I have just started on Keytruda. So far my only side effect has been fatigue. I nap pretty much every day. I have stage 4 NSCLC with mets to my kidney, pelvis, spine, some lymph nodes and 2 nodules in my lung. I was tested and I have a high PDL-1 expression so I'm hopeful the Keytruda will work great. Best wishes to your mom!

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Thank you and I wish you the very very best. My mom is sleeping pretty much all day long. We had to increase her morphine to 180mg per day recently. So unclear if this is related to meds, the disease or the keytruda. Likely a combination. She's also sweating a lot. I just hope we can get in three infusions to see if it's actually working. Sending you my best energy.


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[Spagano5]

Hi, I'm am not on Keytruda but am on Opdivo. There are very similar, they attack the same part of the cancer. With your mother having a high level of PD-1 expression she has a very good chance of this Keytruda doing her some good. Watch her for shortness of breath ( inflammation of the lung lining) upper abdomen pain ( inflammation of the liver) severe diarrhea ( inflammation of the bowel) and report ANY symptoms she has to her doctor. Remember that where ever there is life there is hope. When I started on immunotherapy I had tumors in my right lung, chest, abdomen, right and left adrenals, by my spine, muscle of my butt, and in my breast. I now have 1 tumor in my right lung that has not grown in a year and a half and no other tumors. So she is not to far gone. Best wishes to you and her, keep us posted.

Your story offers inspiration! Did you have any mutations? Thank you


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[Spagano5]

I was diagnosed with stage 4 non small cell lung cancer 1/13/16. I had 10 sessions of radiation for cancer in my hips and 6 sessions of taxol/carbo. The hips are healing and the pain is minimal. CT scan showed the tumor on my lung and the tumor on my sternum had both shrunk. My oncologist was very happy with the progress.

I started Opdivo in June. All scans have showed no new growth and no new cancer. The side effects are minimal. Overall muscle aches at times and some fatigue, but I can live with these effects.

After my last treatment of the platinum base chemo, I developed peripheral neuropathy in my feet and taking gabapentin for that side effect.

Jennifer

Jennifer thank you for taking the time to reply and share your story! Such great results. I hope it continues to keep progression at bay and that you can do all the things you enjoy. Very best to you
Stephanie


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[Woodburn9]

Hi, I have no treatable mutations. 

Your mothers sweating may be due to the morphine. Alot of pain meds can cause sweating.

[Spagano5]

She was majorly dehydrated and had high levels of calcium - ONC thinks these were making her feel so bad/confused. Got fluids and zometa today. Hoping it will help


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[Here for Dad]

Hi Stephanie, 

My father (67) was diagnosed end of October 2016 with stage IV NSCLC, mets to the brain. 

he underwent targeted radiation for the brain in Nov. (went for a scan in Jan, and no new spots!)

he started cisplatin/ alimta early january and following a recent X-ray and visit to the doctor it was determined that the cancer had progressed (based the lung having collapsed) so the decision to move on to Keytruda (he has a PDL-1 expression of greater than 50%). 

He will start the Keytruda infusions next Friday and we're hopeful that he'll be responsive to it. 

I look forward to hearing how your mother does on the Keytruda. 

Best wishes, 

Stephanie