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Hi all,

I've been a member for a few months but haven't done a "full" post about my mom as I felt I would jinx the possibility of good news (desperate times call for desperate measures!)  I want to write this post to share my mom's journey and possibly relieve someone else's anxiety, while gaining hope and info from all of you.  So, here's her story:

Overall health: 63 years old, obese, diabetes controlled with diet, sleep apnea, rheumatoid arthritis

November 2015 - initial lung cancer diagnosis - NSCLC, stage IIIA. She had shortness of breath which lead to the discovery of a few small nodules.

January 2016 - upper right lobe removal - we had to wait so long because my mom has Rheumatoid Arthritis and the meds she was taking at the time had to be out of her system.  Surgeon found a few lymph nodes that were involved as well, unable to remove it all.  She recovered from surgery quite well. She continues to have pain at the incision site, which we are told is normal.  Overall breathing was better than it had been in years (she had a lot of emphysema in the lobe that was removed).

February 2016 - 6 weeks of weekly chemo (can't remember which kind) and daily radiation - lost hair, pretty bad acid reflux which became controlled with meds. Some fatigue.

Scans & more scans - she received the 1 year "all clear" in April 2017.

We thought everything was going well.  My mom's pulmonary specialist left, so she met with a newly established specialist.  He was looking over her old scans because she was having trouble breathing.  He suggested he scope her bronchi and he saw a concerning area he wanted to biopsy.  Long story short, she has cancer on the back of her trachea that is hard to see in chest x-rays and CT's.  We are thankful someone actually saw it, but frustrated it wasn't found sooner.  They are calling it a recurrence, but several doctors aren't convinced it wasn't there the whole time and just did not respond to treatment.

Possibility of repeat radiation???  This was an important question I wanted answered because I had seen differing answers during my research.  About half of the new mass on her trachea is in the original radiation area.  The radiologist says that he can do radiation again in the same area since enough of it is out of the original radiation zone but the likelihood of having severe side effects is very high. I asked about radiation seeds and internal vs. external beam therapy - he said they can all have the same result of increased side effects.  He is one who believes the mass was there the whole time and did not respond to treatment in the first place. So he suggested radiation as a last resort if other treatments did not work.

July 2017 - trachea stent put in to open airway (mass had airway closed 70%).  Surgery was a breeze, she can breathe well.  Mom was in and out of hospital after surgery with severe mucus build up. Still has mucus build up.

July 2017 - Treatment plan - 8 rounds of Keytruda (she has the PD-L1 mutation), the first 4 with chemo - alimta carboplatin, every 3 weeks.  New treatment info: Adding chemo to the Keytruda at the beginning of treatment is having better results than Keytruda alone. This information was released in June 2017 at a national cancer conference.  It supposedly brings the effectiveness from 30-50% up to a flat 55%.  We will take every small piece of help we can get!!!  CT scan will be after the first 4 treatments to see how things are going.

Keytruda and Rheumatoid Arthritis:  her oncologist is unsure how her RA will react. Her RA has never been under control, so she deals with a lot of pain anyway.  They are assuming she will have major flair ups.  We will deal with those when they happen.  Large doses of steroids and all RA meds can reduce the effectiveness of Keytruda, so we will have to get creative.

July and August 2017- My mom is on her 2nd treatment.  The biggest side effect is total exhaustion.  However, she began her 1st treatment 1 day after spending nearly 3 weeks straight in the hospital.  Her oncologist feels that the extreme fatigue is more likely due to recovering from her stent surgery and all of the hospital visits.  She still has a lot of mucus and her pulmonary specialist is keeping it "sucked out".  She coughs a lot and does not have a voice.  We will learn more as we go but so far she's surviving and we feel things will get better with her breathing and fatigue.

August 4, 2017 (a day we can (mostly) breathe) - PET scan results show that cancer has not spread (cue happy dance!!).

So what now??? We live day by day. I take part in these forums to find support and to give support. After finally receiving the first bit of good news in several months (the cancer had not spread), yesterday was the first day I didn't break down bawling.  We are finding our new "normal". She is being silly and laughing more. And in October, we are going to see Jimmy Buffett for the millionth time!

I plan to update this post periodically with information that I think is important to share for those looking for information and when I need some advice or a bit of support.  I appreciate each and every one of you for your kind words to all that reach out and for fighting to live so we all can have a little more hope at the end of the day.

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Yay!!  So happy to hear Mom is doing well!

And I'm a HUGE believer in the power of live music.  I will be seeing Green Day later this month for about the tenth time (and the third time THIS YEAR).  I hear you Parrot Heads are a wild bunch. :)

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Well Steff, great news and I'm so happy to hear your mother is doing well.

Trachea stents and mucus build up is a real problem.  I had four placed and removed at various times in my treatment history.  I used Mucinex and although it is supposed to be for lung congestion, it worked well to break up the mucus that the stent captured.  Of course, I had a Combivent inhaler and that also helped.

Have fun at the Buffett concert!

Stay the course.

Tom

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Thanks for your reply, Tom. She had an appointment yesterday with her pulmonary specialist and he would like to remove her stent once the mass is reduced.  I'm glad to hear of someone who had stents put in several times and removed as her doc made it sound like it was no big deal.  She's also using a nebulizer with albuterol that helps keep the mucus thin so she can cough it up. And Muxinex has become her best friend!  

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Tom,

I mentioned to my mom about your multiple stent placements and removals and it made her feel better about having it removed (we assumed it would stay unless it gave her troubles). She was wondering if you had to stay in the hospital after you had yours removed???

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Steff,

Three removals were day surgery: morning procedure, afternoon discharge. There were complications on the last removal that earned me an overnight stay. I think the complication  was a reaction to anesthesia. 

I hope your mom is feeling better.

Stay the course. 

Tom

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Update & Question:

My mom has not been breathing well - fluid in her lung and now fluid where her right upper lobe used to be.  She attempted to have the fluid removed today, but the doctor was only able to remove a small amount.  Apparently she was told that she would need to have surgery to remove the rest because of tissue in the area.  Does anyone have any experience with this??

She also reports that she had fever chills last night - something she has not experienced with treatment previously.  She is nearly 3 weeks out of her last chemo/Keytruda treatment and will have her next one in a few days.  She drank some warm water and it helped make the chills subside. She has no fever today.  We will obviously tell her oncologist when we see her in a few days, but I am wondering if this is something more major that we should report sooner?  Should side effects pop up this far out from treatment that have never occurred before?  Questions I will definitely ask her doc, but just thought I would put them out there in case anyone had some insight.  

Thanks! 

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Steff,

I've had both fluid in my lung (pneumonia) and fluid in the empty thoracic cavity.  I was told the latter is normal.  When an organ is removed, the body produces fluid to fill the void.  Thus, the right side of my chest is an open cavity filled with fluid.  Fluid in the lung is not normal.  I've never had fluid removed by surgery.  When I had sutures break on my bronchus stump, a chest tube was installed to drain fluid filling the empty cavity but that was a temporary situation.  

Ask your mom if she's had night sweats or fever chills.  Night sweats occur when one has difficulty breathing.  They can resemble fever chills because one is cold when waking up with a wet body.  Has your mom had a sleep study.  Her cancer treatment and undiagnosed sleep apnea could be combining to cause respirations problems when sleeping.  If it happens again, you'll know it is night sweats and she'll need to see a doctor quickly.

Stay the course.

Tom

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Update: 9/7/17

My mom was taken to the ER on August 23rd with shortness of breath. She ended up having pneumonia, pleural effusion that was infected, and c-diff (a bacteria in her colon resulting in horrible diarrhea).  The pleural effusion was so badly infected that the body had began to wall it in, creating several "sacks" of infection that could not be easily drained.  Luckily, a radiologist was able to successfully insert a chest tube to begin training the fluid.  They then injected a medicine that breaks down blood clots that helped to break down the walls of the "sacks".  After 3 days of drainage, her lung began to inflate itself and her breathing got better.  They drained over 2 liters of fluid - no wonder she couldn't breath!  She was in the hospital for nearly 2 weeks, but is feeling great now.  These infections have been brewing for awhile now, which may explain why she felt so crappy during her first 2 chemo/keytruda treatments.

She will resume chemo/keytruda this Friday.  I'm hoping that she will be able to bounce back a bit faster after her treatments now that she is breathing better and isn't full of infection.  Yesterday (2 days after being released from the hospital), she attended a doctor's appointment and ran some errands with her sister.  She was out of the house for several hours - this has not happened for at least 2 months, so I am hoping there will be more brighter days for her!!  Please keep her in your thoughts as she still has a long battle ahead of her!

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Steff,

I'm glad the infection is under control.  When I was receiving chemo, I had before and after blood tests to check red and white counts.  Is your mom following this protocol.  If so, I wonder why no one questioned the spike in white blood cells normally associated with infection.  Or perhaps, the chemo tamped down WBC counts.

Anyway, a day on the town with her sister is grand good news and let's hope she continues feeling better.

Stay the course.

Tom

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Tom, 

Right now, she is having blood draws every 3 weeks just prior to her treatment, her last count was near normal. She was getting ready for her next chemo treatment when she went into the hospital.  Her white counts were high at hospital admission, but have continued to reduce since.  So maybe the chemo tamped down the counts or maybe the infection hadn't gotten completely out of hand at the time of her last chemo.  She did have evidence of fluid on her lung at her last chemo but it was not enough to warrant having it removed at that time (she's had a bit of fluid there since her lobectomy in 2015 and has had it sucked out once since the surgery).  Now that I know that a spike in white blood cells are often related to infection, I will keep a better eye on it.

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September 2017 update and info on Keytruda side effect.  WARNING: You may feel a bit of hope/joy after reading this!!!

My mom has had 3 infusions of chemo/Keytruda. Last week, she noticed her large moles getting much darker and what looked like a rash on her thighs  (but no bumps or itching).  After being seen by part of her oncology team, she was told this was skin pigmentation changes due to Keytruda.  It is temporary and nothing to worry about.

On Friday, 9/22/17, my mom's pulmonary specialist (who is amaaazing!) scoped her throat and removed some scar tissue around her stent.  She has continued to have a severe cough and the doc hoped that removing some of the scar tissue might help.  After the procedure, he told us that it appears as though her tracheal stent will be ready to be removed after she has her 1st CT since starting treatment.  Although he couldn't say for sure that the tumor had shrunken, he did say that when he originally placed the stent, it had been flat on the backside where the tumor was - it was shaped like a D because the tumor was pushing on the stent. Now the stent is shaped like and O!!!  We are taking this as great news and that her treatment is helping to shrink the cancer!  

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Steff,

This is wonderful news!  I do hope your mom's stent comes out soon.  I know how difficult it is to have a stent in the trachea, and her quality of life will improve very rapidly once removed.

Let us also hope Keytruda keeps having a positive effect on your mother's tumor.

Stay the course.

Tom

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HI Steff,

. I've been following your mom's story. I'm glad things are looking up for her! She's been through a lot.  And I'm sure you have too.  Best wishes to both of you.

Bridget  O

 

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So glad she's getting out and about, and that the infection's been addressed.  VERY encouraging news--I'm sure it's a relief for both of you.  Keep on keepin' on!

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Steff, thanks for the warning! I did feel hope and joy after reading your post! I'm very happy you have good news to share. Please continue to post updates. We are very grateful for the support you've given so many others in this community.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation
 

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This is what finding hope in my mom's cancer journey looks like...living life to it's fullest and letting our Parrothead feathers show at a pre-concert Jimmy Buffett party (this was also pre-margaritas!!).  I hope this photo can add a smile to your day.  Hugs 

-Steff

Untitled.jpg.864ef76a59c0810ec0028f94cc71c03d.jpg

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October 2017 update: trachea stent removed and 5 chemo+Keytruda treatments complete.

Good morning all, 

I wanted to give a quick update on my mom as lots has happened over the last month.

My mom had her mid-treatment CT on October 4th and it appeared that the cancer on her trachea had shrunken.  So, my mom pleaded with her doc to remove her trachea stent and he did so on October 6th.  She had spent the past 2 months coughing non-stop and was miserable. She had a mild infection where the stent was, which her doc told her was not uncommon and could be the reason for her constant cough - we were really hoping this was true.  She was given antibiotics and steroids and her coughing lessened dramatically.  Her cough is now controlled with a Mucinex regimen and her quality of life has increased dramatically. 

Her 4th chemo + Keytruda treatment went well. Since she was on steroids, she did not have the week-long flu-like symptoms that she normally has had.  Her 5th treatment went well too, but she is back to having flu-like symptoms and she is really down about it. She continues to get random infections and now has an infection in her toenail due to clipping it too short, so she is on antibiotics again.  

Current Keytruda side effects: Skin pigmentation changes has spread to her chest, back and neck - from a distance it looks like she has a nice tan.  Hair thinning, but nothing drastic - this could also be from the chemo.

With November coming up, it helps to remind me how thankful I am for all of you and for all of the advances in LC treatments in the past couple of years. 

Take Care,

Steff

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HI Steff,

I'm glad to hear that your mom is now more comfortable. It has to be weird and unpleasant having a foreign object, even a necessary one, in your trachea! I hope they can get a handle on the infections.

Bridget

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Steff,

Each of my stents caused coughing and congestion that departed soon after each was removed.  So, I'm hoping your mom's symptoms decline quickly given the recent removal.  I've read a lot about Keytruda but don't have any first hand knowledge about the drug, fortunately.  I wish I could blame my hair thinning on chemo!

Stay the course.

Tom

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Hi, Steff,

I'm happy to hear that your mom's cough and QOL are improving! We are thankful for you too!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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@Steff - This is such great information. I'm happy to hear that your Mom's treatment is going well overall and her quality of life has improved. I know this wasn't without bumps in the road but is comforting to hear. My Mom was originally treated with Alimta and Carboplatin (no Keytruda) and responded very well to the treatment. Surprisingly, she did not lose her hair at all (we were all amazed - including her doctors).  Her second line treatment will be Carboplatin again along with Abraxane and Avastin. These treatments are much more frequent so I'm nervous how she will respond. Right now, her oncologist is considering Keytruda as a third line treatment until she sees how she responds to this combination.  Since she's had such a positive response from the chemo before, they are going to try this. Reading you updates is helpful and I'll continue to follow :-)

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November update - Thankful Edition

Hi all,

Here's a quick update on my mom's treatment:

November provided 1 more Keytruda/Chemo infusion (6 in total).  Flu-like symptoms consistently start 2-3 days after treatment and last about 14 days.  She's had it rough, but she's making it.  She is still breathing well without the trachea stent - O2 is in 97-99 range (better than me most days!!).  Her cough is "normal" and maintained by taking Mucinex.

Keytruda side effects: continues to have skin pigment changes on her legs and chest - still no big deal.  Her face has started to itch a bit - along her chin, but she is not showing dry skin yet.  She got some oatmeal-based body lotion (Aveeno) and a face cream suggested by a sales associate at Walgreens.  Thyroid continues to drop so her doc increased her dose of meds.  So far, these are the only noticeable side-effects - very manageable!

On November 29th, she had another CT with contrast (about 7 weeks since last CT).  Her doc was hoping that the scan would show stable or improved results to warrant stopping chemo and just proceeding with Keytruda.  Unfortunately (maybe), her scan showed a "thickening" (whatever that means!) near the site of her mass.  Her doc says it could be a couple of things - scarring from radiation a few years ago, inflammation, or cancer progression.  The doc never used the term pseudo-progression, but I am hoping that is a possibility too.  The oncologist said that my mom's pulmonary doc (who is AMAZING) hadn't had the opportunity to review the scan, but we all anticipate he will likely want to scope her throat to see what really is going on.  So, here we are again in the waiting game, something that I do not handle very well.  The good news is that my mom only had Keytruda (without chemo) this time, since the chemo is either not working or it has worked and there is no need to continue to subject her to the nastiness of chemo.  My mom is feeling great and is happy - something I need to focus on rather than this stupid CT.

And finally (and maybe most importantly), my mom had a wonderful Thanksgiving with her family!  2 days prior, she and I attended a "Beauty for a Day" event held by a local agency - she was able to get a facial, massage, nails painted, and more.  She is still talking about it with her sisters!

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