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Helpingmom

Keytruda

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Hi, Helpingmom,

I will reach out to some of our community members who have taken Keytruda to see if they can provide any insight to your question. I am glad that your mom's latest scans were great!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Helping mom,

I have not heard of these side effects, but anything is possible.  If it continues, I would definitely suggest bringing it up to her oncologist.  Make sure she doesn't have a UTI.  I have a friend who had dementia-like symptoms and was hospitalized.  It turned out to be a really bad UTI causing her confusion.  Once that cleared up, she was back to her regular self.  Also, is her oxygen level okay?  My mom gets "dinghy" when her oxygen level is low.

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I am taking Keytruda every 3 weeks and have had 4 rounds. They will do a scan after the 6th. As this is my last treatment option, (diagnosed 2 years ago, stage 4) I am anxious to know if it will be of benefit. My doctor says if it is not, then he will consider adding Alimta to the mix. Has anyone heard of this combo? I cannot find anything online about it, but as everything in immunotherapy treatment is moving quickly it may not be online yet. Also, I have the headache quite badly, does this diminish in anyones experience. I do realize all patients respond differently.

Thank you for your help.

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Alice,

My mom is taking Keytruda with Chemo (Alimta/Carbo).  A few months ago, a study was released (we heard about it from my mom's doc) that found Keytruda can have better outcomes if it is paired with Chemo for the 1st 8 sessions of treatment.  I am not sure if that is for everyone or just for people with recurrences of lung cancer (that's my mom's case). It's nice that your doc knows of the option and can use it if needed.  My mom is having a scan after her 4th treatment (which was last week). I am assuming the differing timeline is due to the fact that my mom is on chemo + Keytruda.  One thing I have learned along the way is to not be disheartened if your spots/nodes/mass/etc show growth in your first scan - that is a common occurrence but does not mean that your cancer is growing. What we've been told is that the masses basically are inflamed because they are being attacked.  Most people show a decrease in size at their next scan.

As for headaches, my mom has not experienced that. The only side affect that has been directly attributed to Keytruda so far is skin pigment changes (darkened moles & discoloration on her upper thighs).  We are told this will go away, but my aunt has been on Keytruda for 2 years and it has not gone away for her.

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Haven't updated in a long time. Mom is still only taking keytruda. Her cancer was much more advanced than she told everyone which is why she wasn't letting anyone go to appointments or ask any questions. Finally got the truth which was hard, but I feel I needed to know what we were dealing with. Keytruda has been a blessing. Some tumors have shrunk, some stayed the same, but nothing has progressed since she began treatment almost a year ago. She had some thyroid issues which is a side effect of keytruda, but thankfully that was able to be controlled with medication. She often gets dehydrated and has gone to the hospital for fluids on a few occasions. Now they often give her fluids when she goes for treatment and a new medication for nausea, which the doctor said was probably from her liver tumor, has helped immensely with that issue along with her finally following directions to drink lots of water each day. Even with all the good news, she has been really depressed lately. Not sure if that is just from dealing with all of this or a side effect of treatment. I worry about her mental health more than anything right now because I've seen the power of positive thinking when it comes to fighting cancer. 

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Helpingmom,

Happy to hear from you again and even happier to hear that your mom's cancer has not progressed!  I used to think that non-progression wasn't enough, but I am learning to accept that dealing with this chronic disease sometimes means that accepting a status-quo report can be a good thing.  

Depression is a tough one. Although depression isn't listed as a common side effect of Keytruda, it's not surprising to hear if/when someone battling cancer becomes depressed. Keep an eye on her.  My mom decided it was time to try an antidepressant, she started Zoloft 1 month ago.  She also has seen a counselor 3 times.  The counselor really helped, she told her that what she was feeling was normal and it took a big weight off her shoulders.  I anticipate that the Zoloft will help her a bit too.  I'm not a pusher for antidepressants, but if it helps, why not?

On another note, how are you doing with all of this?

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There are times when the process of dealing with doctors, treatment and cancer get under your skin. This morning, on my drive to see my oncologist, I was literally yelling " leave me alone".   I just saw my oncologist who outlined my chemotherapy plan. He is kind and positive. I'm getting my smile back.  You might take your mom outside for a walk or something you think might distract her....help her feel a bit of normal.

 

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Helpingmom,

I didn't have Keytruda but I sure suffered depression during the chemotherapy phase of my treatment saga.  And, for 2 of the 3 years, I didn't tell anyone about my depression.  Soldier syndrome -- real men don't suffer depression, right?  When my GP and I had a frank discussion about it, I was referred to a therapist and prescribed medication.  Both helped, a lot!

If your mom has done a good job camouflaging the scope of her lung cancer, she might be really understating the amount of depression she feels.  I'd be very mindful of her depression, even to the point of arranging a psychologist consultation and taking her to the first session.

I know how hard it is to endure treatment, even Keyturda.  I know the fear and fight this disease causes.  And, I know very well the doom phase of waiting for results from diagnostics.  Life is too short to interrupt opportunities for happiness that depression causes.

Stay the course.

Tom

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Thank you all so much. I check on her daily and try my best to talk about other things as she doesn't want everyone asking her constantly how she feels. I can see how that would drive someone crazy. I am always suggesting she take another trip or get out and do something fun but she rarely wants to go. I just try my best to do what I can and make sure she knows I'm here. She would never seek professional help for the depression. Never. It's pretty much up to me to help her with it.

No one except my husband really knows the effect this has had on me. I try not to discuss it too much as my mom hasn't told everyone yet she is sick and no one else that knows really seems to understand how serious it is and of course I am always hopeful about the situation when we do discuss it. I'm just lucky to have my husband to lean on. 

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Hi, Helpingmom,

Just wanted to check in and see how you're doing. We're thinking of you! Please post an update when you can.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Thanks so much, Lauren. So far so good. My mom goes in for another scan on 5/31. Praying the keytruda is still working. She has very tired days and some nausea but other than that, she feels good most days now and still works full time. So thankful for keytruda! It's been a year and no progression and we have seen reduction in several of her tumors. I am doing my best to be positive  with her and concentrate on my work and my husband and take things one day at a time. :-)

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My mom's scan was amazing! They actually showed her all her scans for the last year so she was able to really see the progress keytruda has made. The spot in her liver is almost gone and can barely be seen. The spot in her lung which had looked as she put it" like a giant hole" is now the size of a pencil eraser smudge. She said it was 1.2cm. On her last scan 4 months ago it was 1.6!  There is also no new activity in the lymph nodes or anywhere else. I'll take that! I honestly don't know how this all works as far as how much more time this will mean for her though, but as there has been no progression, I take it as a win. Prayers as always for all of you!

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What great news! Keytruda does so many amazing things for so many people!  And although we do not know what the future holds, the important thing is that things look great TODAY!  So very happy for you and your family's "win"!  Enjoy the great news and do a little happy dance for her!!

Take care, 

Steff

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That is wonderful news! I'm very happy for you both. Please continue to keep us posted. And let us know how you end up celebrating!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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This has been a great thread for me to read.  I've had 6 treatments with Keytruda+Alimta+Carboplatin, then my insurance company moved me to Keytruda treatments alone. It made me a little nervous, but reading this thread has been inspiring!   I've now had 3 solo Keytruda treatments after the previous 6 cycles of the combo.  My last scan showed some shrinkage, so that's good news!  Especially since my previous x-rays showed the areas getting larger, which my Onc said was typical of Keytruda in the first couple of months.  

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That's great news, Elke! Thank you for sharing and please continue to post updates!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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