Symptom alleviation with Keytruda - quality of life

[DrBee]

Hi friends, 

I've shared, I think, that DH''s main symptoms are fatigue and [even moreso] cough (brought on by movement, change of position, eating, and talking). Since getting bad the last 6 weeks, they have had a serious impact on quality of life, because he doesn't want to go out in a lot of public places (restaurants etc) with the cough, and our favorite thing to do together - going for walks and bikerides together looking for birds and other animals - has been seriously curtailed. He doesn't want to move much because of the cough -and, of course, the less he moves, the more his overall cardio fitness is being impacted. (Of course good old LC is to blame in part as well.)

He is 49, was just dx'd Stage IV. Mass in UR lobe is appr. 9cm x 4 x 5; also has lymph node involvement on both sides of lung as well as one superclavicular and a few axillary. No other organ system involvement at this point. 

The doc has said he has no activity restrictions, except as tolerated, just not to overexert. Yesterday we went for a 3m walk and he was totally wiped afterward. 

All of which is a very wordy way of asking: When on keytruda, to what extent, and how soon , did you see symptom alleviation? Also, I've been trying to find information on the proportion of folks that respond to Keytruda (his PDL1 score is 99%). So far the google hasn't helped me out there much, yet! I should have just asked here, first!

[Johnny5]

DrBee yeah, I have experienced "googled crosseyed hysteria!"

We were at the Pulminologist's couple of days ago, this was the take away. A good example of the myriad of circumstances is Grandma's goulash recipe even Mamas recipe isn't exactly the same. So multiply that by a fixed number of oncologists each having multiple "recipes". That is the only limit to the variables available.

2016 Seventy yo smoker history of reoccurring pneumonia presented spiculated mass stage 1 NSCLC lower right lung size of a grape. CyberKnife treatments.  Followups every 3 mos showed improvement. With NED, the first 6 month CT scheduled at which the original had returned and a new one in the upper left, biospy,fudical, for 2nd Cyberknife to be followed by chemo and/or radiaton. Pet scans shows the original scar tissue. Cough yet lungs are clear, no lymphatic involvement to explain new issue. Fatgue but no bone involvement.

For all the info I have gathered there is no similar case. I have contacted a realtor, as Keytruda is not covered by insurance.

While Lungevity is a valuable resource, for me I have to reserve my strength and sanity for the unknown of tomorrow.  

 

[DrBee]

Thank you Johnny5. Would love to hear others' experiences too!

[bes]

Hi DrBee

my husband is 79 years old diagnosed end of September 2017 with squamous cell lung cancer one spiculated nodule and mass (5.2cm) in lower right lung no where else in body. He had 10 rounds of radiation last November and started Keytruda in January did ok but starting in March had infection and was put on prednisone but CT scan in March showed the tumor had shrunk to less than 11mm.  He caught an infection in April and has been on prednisone off and on until just 2wks ago. He had CT scan last Monday the tumor had doubled in size but everything else was stable.  The Dr. tells us he doesn't know if it's the prednisone interacting with the Keytruda or the Keytruda is not working he suggested to stay the course another CT scan in September if it has grown then we will be talking quality of life decision as the Dr. doesn't think my husband could do chemo.  My husband also has a cough and this is the 10th treatment he has had the last two have been rough on him the fatigue is terrible gets up in the morning for an hour and back to bed and his pain has returned at a level 4.  I hope this info helps

[DrBee]

9 hours ago, bes said:

Hi DrBee

my husband is 79 years old diagnosed end of September 2017 with squamous cell lung cancer one spiculated nodule and mass (5.2cm) in lower right lung no where else in body. He had 10 rounds of radiation last November and started Keytruda in January did ok but starting in March had infection and was put on prednisone but CT scan in March showed the tumor had shrunk to less than 11mm.  He caught an infection in April and has been on prednisone off and on until just 2wks ago. He had CT scan last Monday the tumor had doubled in size but everything else was stable.  The Dr. tells us he doesn't know if it's the prednisone interacting with the Keytruda or the Keytruda is not working he suggested to stay the course another CT scan in September if it has grown then we will be talking quality of life decision as the Dr. doesn't think my husband could do chemo.  My husband also has a cough and this is the 10th treatment he has had the last two have been rough on him the fatigue is terrible gets up in the morning for an hour and back to bed and his pain has returned at a level 4.  I hope this info helps

Bes, thank you so much!  So, sounds like very mixed results for you? I'm so sorry to hear it! Did he feel better once on the Keytruda than he did before?

[Steff]

DrBree,

With my mom's recurrence, she had six sessions of Keytruda + Carbo/Alimta triplet.  Then she went to Keytruda only.  She had a bronchial stent for the first 3 months of her treatment, which caused a constant cough.  It became infected and the cough got worse.  As soon as it was removed the cough lessened and then was completely gone.  So, my mom's cough is not the same as your husband's. But what I can say is that within 3 months of the triplet, the mass that was cutting off her airway had shrunken so much that the stent was no longer needed.  Her PD-L1 is in the upper 90's as well.

I don't recall if your husband will have just Keytruda or the triplet?????  The triplet definitely seems to move things along more quickly.  Either way, your husband will likely find some relief.  Since his cough is so extreme, he very well could not see relief for 3 months.  In the big scheme of things, 3 months isn't much.  But when someone is constantly coughing, it seems like forever.  You both need to be patient and let the drugs do their job.  Walking 3 miles and NOT feeling exhausted afterward is probably not in the cards right now and it may never be.  When my mom was coughing nonstop, she was exhausted from not sleeping and not being able to take a deep breath without coughing.  It's exhausting.  So adding a 3 mile walk on top of it would have been way too much for her. 

My mom lost a lot of her stamina through both bouts of LC treatments.  But she became very active in pulmonary rehab offered at our local hospital and was able to build her stamina back up after both treatments.  Now she is having shortness of breath and hasn't been able to attend rehab, but she begins again tomorrow.  She will again build back some stamina and feel better.  See, lung cancer is a vicious cycle.  What may be possible today, may not be possible tomorrow.  For my mom, finding a "new normal" means finding it on a weekly basis.  Being actively involved in LC treatment brings on new things all of the time.  You and your husband may have to find a new favorite thing to do, at least until his cough gets better.  Not being able to do all physical activity that you once were able to do does not mean cancer is winning.  It just means that our bodies need a break to be able to combat the cancer.  Taking a vacation from rigorous or lengthy exercise may allow the body to rejuvenate the energy it needs to fight the cancer and deal with the treatments.

Take care,

Steff

[bes]

DrBee

Yes my husband felt much better on Keytruda within months he went from having to use a wheelchair to using a walker and even sometimes without and he was pain free from February until about 2 weeks ago. His PD-L1 was 50% .  The Dr. is hoping the Keytruda will kick back in and so are we; I'm so hoping that maybe in another week he will be pain free again--that was the sign we had the last time that the tumor might be shrinking.  But today the fatigue came back again and he is back in bed at least he has a good appetite.  

[LOVEMAMA]

Hello Dr Bee,

If your husband's PDL1 score is 99%, it worth to try it....

My mothers score is 10%, we tried it and hope it could work!

She got fever and feels tried.... but we should try it...

[May2]

On 8/4/2018 at 11:59 AM, DrBee said:

Hi friends, 

I've shared, I think, that DH''s main symptoms are fatigue and [even moreso] cough (brought on by movement, change of position, eating, and talking). Since getting bad the last 6 weeks, they have had a serious impact on quality of life, because he doesn't want to go out in a lot of public places (restaurants etc) with the cough, and our favorite thing to do together - going for walks and bikerides together looking for birds and other animals - has been seriously curtailed. He doesn't want to move much because of the cough -and, of course, the less he moves, the more his overall cardio fitness is being impacted. (Of course good old LC is to blame in part as well.)

He is 49, was just dx'd Stage IV. Mass in UR lobe is appr. 9cm x 4 x 5; also has lymph node involvement on both sides of lung as well as one superclavicular and a few axillary. No other organ system involvement at this point. 

The doc has said he has no activity restrictions, except as tolerated, just not to overexert. Yesterday we went for a 3m walk and he was totally wiped afterward. 

All of which is a very wordy way of asking: When on keytruda, to what extent, and how soon , did you see symptom alleviation? Also, I've been trying to find information on the proportion of folks that respond to Keytruda (his PDL1 score is 99%). So far the google hasn't helped me out there much, yet! I should have just asked here, first!

Hi DrBee, 

I hope all is well. Would love to hear about how your husband is doing. 

Is he still on Keytruda, has he found a way to manage the symptoms? 

-I Was recently diagnosed, I am currently on Keytruda, got 3 treatments, getting scans next week-

It defenitly makes me very tired, and compromises my ability to workout, and do normal daily chores, I find myself having to worry about how many times I have to go up the stairs to my room everyday  ☹️.  

Hope all is well for you and your husband