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Steff

Keytruda, 1 year later

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Hi all,

Since my other discussion thread was getting quite long and it's been 1 year since my mom started Keytruda, I decided to start a new thread here, where it might be better seen by those who are looking for information on immunotherapy.  

So, the 1 year update on my mom....she survived and lived to talk about it!!!  She got her CT results yesterday and it was all good news....area around the cancer is stable and may look better (inflammation-wise).  We have not been able to see the mass on the back of her trachea since October (2 months after beginning chemo + Keytruda).  It still could be there, but it is not causing any problems.  I don't know if the term NED will ever be used with her since we cannot get a perfect picture of where the mass was, so we are just using the term "stable".  So, for us, "stable" is great news!!!  There is a "shadow" that is showing up in her left lung that appeared out of nowhere.  Her pulmonologist thinks it is most likely some inflammation or infection - he will keep an eye on it, but is not alarmed by it.

Her shortness of breath still persists, she has 1 more heart test to do to see if that is the problem.  If it is not, we are to the point where we will likely accept shortness of breath as a new normal for her.  Luckily, her pulmonologist does not believe that Keytruda is the culprit, so we plan to stay on it as long as possible.

Keytruda side effects: severe itchy skin - it drives her crazy especially at night.  She currently takes Benedryl at night if itching is out of control and she has also found an Aveeno excema cream that relieves itching for a bit.  Although the itching is bothersome for her, she would rather deal with it than cancer.  Other side effect, but it is controlled by meds is her thyroid.  She had a slow thyroid to begin with. It got slower, she just increased her meds and it is now controlled - no big deal.  Docs keep an eye on it and increase/decrease thyroid med dose when needed.

This time last year, I felt hopeless.  My mom's lung cancer recurrence was a punch in the gut.  I was heart broken when we were told that due to the location of the mass, it could not be surgically removed, nor was it recommended for the first treatment attempt to use radiation (some of the mass was in the original radiation field from her previous bout of lung cancer).  So came the recommendation of Keytruda + Alimta/Carbo.  I was unhappy and scared of this new "immunotherapy stuff".  But this"immunotherapy stuff" is the best thing that has happened for my mom's lung cancer.  If you are a newcomer to lung cancer and/or immunotherapy, do know there is hope.  My mom has more hope now of surviving cancer than when she was originally diagnosed in 2015.  And it is all due to continued lung cancer research and development of new treatment options.  

My main take away from this last year is: 1) My mom is tough as nails, 2) Even in the darkness of a lung cancer diagnosis, there is hope.

Take care,

Steff

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This is wonderful, Steff! We're very happy for you and your mom! Thank you for sharing your experiences with this community.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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November 2018 update on my mom

Well, my mom was recently released from the hospital. She spent 5 days. 

For over 10 weeks, my mom has had what she thought was only to be C-Diff.  For those who are unfamiliar with C-Diff, it is a bacteria in the intestine that causes severe diarrhea. In my mom's case, it is uncontrollable.  Those who have been on antibiotics are more susceptible to it and it's very contagious.  This is her 2nd time having it and this time is much worse.  She attempted antibiotics, but nothing would help.  She then had a "fecal transplant" (don't ask!).  We assumed that did not work either because she continued with the uncontrollable diarrhea and then moved on to vomiting.  The vomiting put her over the edge and she was admitted to the hospital. 

I promise this update will become cancer relevant very soon!

A colonoscopy later, we found that the fecal transplant did work, she no longer had C-diff.  But her colon, intestines, and stomach are very inflamed.  All other tests from the colonoscopy are negative.  The severe inflammation is a side effect of immunotherapy.  Apparently my mom's body has had enough of having an over active immune system.  She also has inflammation-type stuff going on in her lungs.  So, she is on a treatment break (maybe forever?????) and is on prednisone to help reduce the inflammation.  Her itchy skin that she has had as a side effect for some time has turned into bumps and is more itchy.  I imagine that is another issue from Keytruda as well.  I won't be surprised if other issues arise as well, but at least we will know the likely cause.

So, if you are on immunotherapy and have persistent diarrhea, make sure to get it checked out.  It may not be a simple side effect of your treatment and could be the sign of something more extreme going on.  

My mom is a very tough lady, but this past year has been really hard for her - the hardest since she was diagnosed 3 years ago.  And every time I bring her home from the hospital, she is a bit weaker and more fearful of what is next - we all are.  Despite all of this though, she still is trying her best to be able to attend her first Christmas craft bazaar in Leavenworth, WA next weekend.  She has been attending a few farmer's markets here locally, selling her handmade goods to raise money for the LUNGevity Foundation and has been planning her "table" for a few months now.  God willing, she will be there.  If not, I will fly solo, doing my best to represent a woman stronger than most.  

Take care,

Steff

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Hi Steff,  I'm glad to hear that they finally got to the bottom (no pun intended) of Deb's digestive problem. I had uncontrollable diarrhea at times when I was on chemo and radiation and it is no fun at all! Say hi to her for me.

Bridget

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Steff,

Give my best to your Mom. I do hope she is well enough to man the table at Leavenworth’s craft Christmas bazaar. 

Good insight on C-diff. Oddly, we watched a PBS Nova special of fecal transplants. 

Stay the course. 

Tom

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Hi Steff,

Thinking of you and your mom! Here's hoping that the treatment break gives your mom some much needed relief and that she's feeling good enough to go to the craft fair and enjoy the upcoming holidays. I'll be thinking of you guys and hope to come back to a positive update soon!

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Hi, Marcie,

Best to your mom from me, too!  I sure hope she gets some relief soon--sounds like it's been a pretty miserable time.  

What is she crafting for the fair?  

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Thanks ladies.  LexieCat - for this bazaar my mom will have winter hats and scarves, American Girl doll clothes, little girl tutus with matching American Girl doll tutu, and microwave bowl potholders.  We have limited space, so she has had to decrease the kinds of items she is selling and I had to get creative in building displays!  (Yes, that's an upside down tomato cage!)  She is feeling a tiny bit better each day and is feverishly working on getting everything done before Saturday!  When I called her last night, she answered "Debby's Sweat Shop"! It looks like she will be well enough to attend, which makes me so very happy.  I love to see her face when people compliment her on her craftsmanship!

We have a friend who is very involved in fundraising with a local Relay for Life group.  We are teaming up with her booth to have a "fight cancer" area at the bazaar where all funds go directly to LUNGevity and Relay for Life.  I am sure it will be a good time no matter what happens!

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Hi friends,

I have a great update on my mom...get your happy dance shoes on!

After being on a "treatment break" from Keytruda since October, she received her first CT results since the break - NO evidence of active disease!  She will remain on a "treatment break" as long as she continues with no active disease.  Although I was not surprised to hear this, it's always a time to celebrate how far she has come.  It's a positive reminder how celebrating life's day-to-day activities is important.  Unfortunately, dealing with lung cancer and it's side effects are a day-to-day activity, so spending time to celebrate is important to us.

While she does not have evidence of active disease, she does have evidence of scar growth in her trachea (where the tumor was).  The "junk" in her lungs that is being called pneumonitis has gotten much better.  So by the looks of her CT, she should be breathing much better.  With the growing scar in her trachea, it could be closing off enough to cause her shortness of breath, so we will pursue that option at her next pulmonologist appointment in a few weeks.

Here is also an important update on where she is at for side effects from Keytruda and some of what we learned yesterday:

-My mom is still having trouble from the areas that are inflamed in her GI area.  She has weaned herself down to 20 milligrams of prednisone with her doctor's urging.  She attempted 10 milligrams, but was too nauseous.  She continues to wake up at about 2am with severe stomach cramping.  She takes her prednisone and it calms down within an hour.  If the pain continues and she can't wean herself off of the prednisone her doc will take a look to see if anything else is going on.

-Her bad rash is nearly gone (probably due to the help of steroids)

-She began to have trouble with her vision.  We both assumed it was a new side effect from an overactive immune system.  Her oncologist is 99% positive that it is due to the prednisone.  She already had an appointment with her ophthalmologist scheduled, so she will look into this issue a bit more with him.

For those of you reading this and are still reeling from the trauma of a lung cancer diagnosis, I hope you can take the message of HOPE from this post.  While my mom has been put through a lot of the past 3 years, she is winning.  She is still strong, she still smiles everyday, and she is still doing the things she loves.  And we are taking a break from all of the stress in our life and travelling to Idaho to see Elton John on Friday (going to concerts is our thing 😊).  And while I will be bawling because this is supposedly his farewell tour, I will also be celebrating that my mom is here to see it and can cry with me!

Take Care,

Steff

 

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Awesome news, Steff!  Your mom is one tough cookie, that's for sure.  And it's so nice that you guys have so much fun together--and more to look forward to.

You'll LOVE the concert--I went last year and it's terrific.  I saw him a couple of times back in the 70s, and this show is even better.  Enjoy, and give my best to your mom!

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Happy dance! Wonderful news!  My niece got me and some friends in to an Elton John concert two years ago....4th row! I love his music. The concert was too loud to do his music justice.  We didn't care. It was Elton John!

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Thanks friends! We are really looking forward to the concert...we've already seen him 5 or 6 times - traveled to Vegas once to see him and saw him a couple of times during the Face-to-Face tours with Billy Joel.  It's always a fun time and each show is so different.  Laurel - as for the noise, I really think Elton could just play the piano while we sing all of the songs since all of us drown him out anyway! lol

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Steff,

Oh happy day!  I remember talking to your mom during the summit.  I recall she was somber about her disease and possible outcomes but determined, oh so determined.  Lung cancer treatment is a slugfest.  It is endured, not tolerated and your mom has more than endured, she's found little pieces of daily joy despite the drama and chaos of treatment.  I am so happy she is NED.  I'm excited you celebrating by seeing "Rocket Man."  While it may be Elton's last tour, it is not your mom's last concert!

Stay the course.

Tom 

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This is great, Steff! Thank you for sharing the good news! We're very happy for you and your mom. I hope you have a wonderful time at the concert!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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