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Posts posted by Steff

  1. 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!

  2. 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.

  3. Hlk,

    I apologize for this untimely post, but wanted to reassure you that through my personal experience in caring for my mom with NSCLC with high PD-L1 expression, your dad's treatment plan is right on with the latest Keytruda research.  At the end of April, findings were released about Keytruda + chemo.  Research has shown that (at least for NSCLC recurrences, it may be different for 1st line treatment) treatment effectiveness is brought to over 50%.  According to my mom's oncologist, Keytruda alone has a 35-50% "success" rate.  My mom is currently receiving Keytruda + 2 types of Chemo for 8 sessions.  She will have a scan after her 4th session to see how things are going - we have heard that it is not uncommon to see tumors grow in the first few sessions  because they are inflamed from being attacked by the immune system.  She will also have a scan after the 8th treatment.  Treatments are 3 weeks apart.  If all goes well with the first 8 treatments, she will just continue with Keytruda after that.  

    After being told that radiation was not an option for her cancer recurrence, we were quite upset.  This new(ish) immunotherapy "stuff" did not match our old school thinking and we were really scared when we were told this was her best treatment option.  We too felt that they were just throwing stuff at us because she was too far gone to do anything else.  But that's absolutely NOT true.  If your dad is being referred for Keytruda, know that it's a good thing.  He is lucky enough to have a "type" of cancer that allows for different types of treatment to be thrown at it.  After being told of my mom's treatment plan, I have done a lot of research into it.  Keytruda is accomplishing amazing things.  Unknowingly, I have a former aunt who has been on Keytruda for 2 years for advanced stage melanoma.  She is to the point where there is no evidence of disease and they are looking at taking a possible treatment break.  She continues to work as a 3rd grade teacher and just got back from a 2 week trip in Europe.  Statistics say that Keytruda is not as effective for melanoma as it is for NSCLC with PD-L1 expression.  

    So, with all of that being said, it sounds like your dad is in the right place for treatment since they are educated on the most recent Keytruda findings.  I would love to hear how your dad does with his treatment, since it sounds like they are in similar spots in their treatment.  I am keeping a string of updates in the immunotherapy section of this forum if you are interested in hearing what is going on with my mom.  Hope all is well and you are taking care of yourself.  Best wishes.

  4. 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.  


  5. 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!  

  6. 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.

  7. What great news!  I am hearing so many wonderful things about immunotherapy!  My mom just started immunotherapy for a recurrence.  We were a bit hesitant at first because it wasn't the normal mode of treatment we were accustomed to.  Now that I've done research into immunotherapy a bit more, I am so hopeful for the future for this option of treatment.  I am very happy to hear that your tumors are stable or gone, with no side effects from treatment! I hope all continues to go well for you, take care!

  8. Helpingmom-

    I don't think that the doctors not recommending anything else for your mom's treatment at this point is necessarily a bad thing.  People have great results with Keytruda alone and if your mom is one of those, it's great for her not have to do chemo.  It is always a possibility to add down the line if the results from Keytruda alone is not what they are wanting.

  9. Helpingmom,

    I was just thinking - Is your mom also doing a chemo "cocktail" with her first 3-4 doses of Keytruda?  According to my mom's oncologist, at a national cancer convention last month, they (I'm assuming the Keytruda people involved with research) announced that mixing Keytruda with Chemo increases the chances of treatment "success" from 30-50% to 55% for people with PD-L1 mutation.  I'm not sure if it's the same for EGFR or ALK mutations.  If you are interested in what chemo "cocktail" my mom is on, let me know - I don't have the information with me at work.

  10. My thoughts are with you and your mom.  I hope her scan shows positive results (no growth or shrinkage).  My mom just had her first round of Keytruda w/Chemo cocktail last Friday.  I hope that you are able to share any updates with us throughout her treatment as I am sure it will benefit many on the forums. As a fellow caregiver, I hope that you are finding ways to care for yourself in the face of all of your stress.  Take Care!


  11. Cindy,

    I am seeing your post for the first time and my response may not be timely, but I have some information on "adult" coloring books. I actually took a class on in at a local Cancer Survivorship Conference I attended with my mom last year.  The person who taught it teaches art therapy and provided a lot of research to back up what she was saying. That being said, either coloring is for you or it's not!  Her message was that coloring can be very relaxing for some.  I personally love "adult" coloring books but never felt relaxed after coloring.  Her explanation was simple - she suggests not coloring the fancy coloring pages that are of traditional things (like animals, flowers, etc) for a few reasons...1) many times the coloring page is too involved and you are unable to complete the picture in the time you have to color, this can cause stress because the picture is unfinished. 2) When we color traditional things (like animals, flowers, etc) we tend to stick with the colors we have pictured that are associated with the thing (coloring an elephant gray, water blue, grass green, etc).  This does not allow our creative juices to fully flow.  So she suggests coloring Mandala shapes (google Mandala coloring pages and a bunch will come up free to print). Mandala shapes are symmetrical, which our brain likes, and can be quite simple.  The instructor's point was that simple Mandala shapes can be colored in as little as 10 minutes and there are no "pre-set" beliefs as to how we should color a Mandala; which allows our creative juices to flow.  I bought a small Mandala coloring book and do find that it is much more relaxing than the in-depth, fancy coloring books.  I actually do feel relaxed after coloring the shapes and can do it in about 15 minutes, which is about all of the time I have to relax!  

    Hope this helps a bit, I found the information she gave very interesting.

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