Finding hope in my mom's cancer journey

[Steff]

Thank you Tom, I needed to hear that today.

[LaurenH]

Hi, Steff,

I'm glad that your mom had a nice holiday and that she enjoyed her spa day! Self-care is so important and so often neglected because of competing priorities. And I'm especially glad that she has a great med team! Most of all (and I'm sure your mom and I will agree on this one), I'm glad that she has you for a daughter and CG!

With gratitude,

Lauren
--

[Steff]

December 2017 update

December brought many happy memories for my family and I.  Now that I am a homeowner of a home with plenty of room, I got to host my first holiday.  My parents and aunt and uncle came to stay for Christmas - we had a wonderful time and my mom was so very happy and was feeling pretty darn good!  We also had a fun-filled New Years eve party as well, as you can see!

So here's the cancer update: My mom's pulmonary doc did a biopsy in early December of the area that showed "thickening" in her previous CT in November.  He biopsied 5 different areas and took a good look around her throat/trachea.  He said everything looked good - he sees scarring (likely) from past radiation treatments and inflammation in the area where her mass is (on the back of her trachea).  He said that the "thickening" could very well be just scarring and inflammation, but wanted to see what the biopsies revealed before he got too hopeful.  We were happy to hear that the biopsies all came back negative for cancer!! Her doc is cautiously optimistic as there still could be cancer cells in the areas that he did not biopsy, but she will be watched very closely and they will be able to catch any progression that may be occurring there. So, we are taking this as great news!  Her 8th infusion was just before Christmas and was Keytruda only (she's had 6 doses of carbo/alimta & Keytruda and 2 doses of Keytruda only).  Her original treatment plan was for 8 doses, so we anticipate we will hear what next steps are when we meet with her oncologist next week.

Keytruda side effects: still has skin pigmentation changes on thighs and chest.  Itchy skin is helped with oatmeal based creams (Aveeno) and I got her a sponge to use while showering instead of a harsh loofah - we will see if that helps as well.  The skin started to peel on the palms of her hands, which may or may not be a side effect.  She was given prescription cream and it is pretty much gone.  All side effects are very manageable and don't cause much problems.

As for her chemo brain - that's another story! She's managing okay and keeps up with the coping skills that she used the last time she had chemo - automatic bill pay, reminders on her smart phone, and just overall acceptance that she is forgetful and gets confused easily.  

But she is here and living her life!  We just saw that the (remainder of) the Eagles will be coming to Spokane in May, so we are already planning for our next concert!!

 

 

[Tom Galli]

Steff,

Simply wonderful news about your mom.  I hope the New Year brings continuing good reports of progression free and NED findings for your mother.

Stay the course.

Tom

[Steff]

January Update: New Year, New Mom

My mom is still going strong with Keytruda.  No new scans yet to see whether or not the "thickening" in the area of her cancer has shrunk or disappeared, but that's the least of our worries.  So far, all month my mom has been feeling great!! She returned to water aerobics for the first time since June and all of her exercising partners were so happy to see her.  She also got to re-enroll in pulmonary rehab exercise at the hospital.  Her oxygen levels are better than they have been in probably 10 years!! (even after having her right upper lobe removed 2 years ago!)  Her first go around at exercise she was able to do 15 minutes on a stair stepper, 15 minutes on an arm machine (like a bicycle for your arms) and 10 minutes on the recumbent bike and her O2 levels never dipped below 94!  I am so proud of her and most importantly, she is proud of herself!! And we are looking forward to having lots of fun this year (last year was a big downer) - we already have plans for 2 concerts - Rod Stewart & Elton John.  I mentioned the Eagles concert in my last post, but all of the reasonably priced seats were sold out during presales   I'm sure there will some other concerts pop up as summer gets closer.

As far as the cancer stuff: Keytruda side effects continue to be minimal - itchy skin and skin pigment changes.  She also continues to have puffy eyes that is being treated as infection.  This has been going on since Thanksgiving.  Although it has gotten much better, it's still hanging on.  I'm not sure if that is Keytruda related or not.  

That's all for now! I hope you all have a great February!!

Hugs,

Steff

[BridgetO]

Woo Hoo! This is great news!

[LaurenH]

This is great, Steff! I'm very happy for you and your mom. I'm glad that the pulmonary rehab has been helpful and that she's able to be more active again.

Looking forward to hearing about the Elton concert!

With gratitude,

Lauren
--
Digital Community Manager

[Steff]

March 2018 update, Spring Edition

My mom just received her 12th Keytruda infusion.  Over the past 3 weeks, her breathing has become more labored.  One second she was fine, the next she was "huffing and puffing", as she calls it.  She was on her way into her pulmonary rehab exercise when it hit her.  We assumed it was because it was pretty cold out - about 20 degrees.  Everyone in the group seemed to be struggling.  But the shortness of breath persisted so she saw her pulmonologist.  Her CT showed what could be inflammation, fluid, or scarring on her upper left lobe, the radiologist report states that cancer is unlikely.  The oncologist is thinking it may be pneumonitis.  Since immunotherapy and steroids do not play well together in the long term, my mom was prescribed a short burst of prednisone - 6 days total - 40mg x 2 days, 30 mg x 2 days, and 20 mg X 2 days.  We will see if that takes care of what we think to be inflammation (keeping my fingers crossed).  My mom's response to taking prednisone: "Ohh good, I will now be able to get the upstairs bedrooms cleaned".  Leave it to my mom to spend her "prednisone high" cleaning house!

The most exciting news is that the "thickening" around the area of her cancer has decreased since her last CT 3 months ago!!  

Side effects from Keytruda: no flaky skin, but very itchy skin, especially in and around her arm pits.  She is using Aveeno lotion and body wash. Will consider a cortisone cream or a powder if the itching persists after prednisone. 

Finally, we are both looking forward to attending the Hope Summit! That is all she can talk about!  

[Tom Galli]

Steff,

'Roid rage!  Yes, I remember that endless energy and bottomless pit appetite condition.

Great news about the reduction in thickening (swelling?) around her tumor site.  Perhaps the Keytruda is cleaning up after the job.

Really looking forward to meeting you both at the Hope Summit!

Stay the course.

Tom 

[LaurenH]

Thanks for posting an update, Steff! Can't wait to see all of you at HOPE Summit!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[LexieCat]

Great news!  Will be fun seeing so many of you in DC!

[BridgetO]

Good news for Spring! Give mom a congratulatory hug for me. I feel like I know her by now.

Bridget O

[wwroam]

Hello Steff

This has been one of the few threads I've read all the way through.

A little off topic question. As a 7 year T2 diabetic, how much prednisone did they feed your mother. At least it wasn't dexamethasone. Did it affect her bg levels. Was her diabetic medication adjusted for the steroids ?

Regards

Wayne

[Steff]

Wayne,

My mom has taken a lot of prednisone in the last few years and is currently taking 50mg tablets for possible pneumonitis. It has never seemed to affect her diabetes. In fact she had a blood draw today and her blood sugar was 126, with taking 1 glipizide pill daily. The only time her meds were increased was during chemo. She hadn't been taking Glipizide prior to chemo but slowly tapered up to an entire pill during treatment. She hasn't been able to taper off yet.

Hope this answers your questions and I hope this thread has helped in some way.

Take care,

Steff

[Steff]

April 2018 update, Spring edition

It seems that in my life, Spring always brings new activities and work.  And unfortunately, this is true for my mom too - work to breathe when moving around.  Her shortness of breath while moving has persisted.  She is fine when she it resting, but her O2 levels drop to mid-eighties when she is moving.  The "stuff" that showed up on her most recent CT on her upper, left lobe has turned out to be pneumonitis, stage 2 with some bacterial infection.  She initially received two 6-day short bursts of steroids to see if it would clear up, but it didn't.  So she is now on steroids for the foreseeable future, 10 days of antibiotics, and her Keytruda treatment has been paused.  

With this set back, I am really looking for ways to keep the hope up.  The roller coaster of lung cancer has really gotten to me recently, mainly due to the unknown.  How long will she have to be off of Keytruda?  Is the pneumonitis truly due to Keytruda and if so, when will it return again? While she is off of Keytruda, will the cancer spread?  The unknown drives me crazy.  Keytruda seems to be working - her most recent scope of her trachea and left lung showed that her trachea is round and her doc doesn't see any cancer.  Wait, what did I just say? -there is no evidence of cancer where the mass was.  Did I just find my own hope and need to get off of the pity pot?

[Judy M.]

Your mom and I are in the same boat. My oxygen is also falling into the 80's when I walk around. Has been doing so for about 4 days now in spite of constantly using my inhaler. Have to see my Pulmonologist in the morning. Expect her to say I'll have to do a course of steroids. And since I just had my scans and they showed my disease is stable I'm concerned about  what this will do to my treatment. 

Judy M

[Tom Galli]

Steff,

I have three recurring episodes that are root causes of shortness of breath.  Normally my O2 sat rate is 93% but during the pollen season (spring & fall), I experience congestion and develop a wheeze and of course find it difficult to breathe. (I've found OTC available Xyzal to be a godsend for sneezing, runny nose, and watery eyes, but it doesn't resolve my chest congestion. Also Paraday [prescription eye drops] are very effective.)  I try and stay indoors during this period but sometimes the outdoors intrudes and I retreat to my rescue inhaler and a very hot shower that produces steam.  The steam seems to ease my swelling, discomfort and difficulty breathing caused by the pollen and eases congestion from illness.  I often use my rescue inhaler just before entering the steam and that produces productive coughing that opens things up. 

I am always at risk of catching the upper respiratory infection flavor of the week (pneumonitis or pneumonia) .  I'm dreading the trip to DC because someone on the airplane will have one and invariably pass it to me.  During the flu season, if I need to fly, I use a surgical mask.  My oncologist's ordered I keep a 14-day supply of Levaquin (levofloxacin) on hand and start taking this medication if I develop a productive cough.  My respiratory infections always seem to start with a sore throat, then an ear ache, then a full on chest cold event.  I start taking Muscinex when I notice a sore throat and sometimes, that minimizes chest congestion involvement.  So, for me, it is a matter of avoiding people during flue season, school-aged children, and recognizing symptoms and starting medication to try and ward off a bad medical event.  When I come down with a bad chest infection, I have almost no energy and am often confined to bed for days at a time.

The last recurring shortness of breath even is exercise induced.  I can walk quite well on level ground, but going up hills and steps just takes the wind out of me.  My GP tells me this is normal for one with 38% of normal lung capacity and it will never improve.

So I think you mom is in the throws of experiencing her new normal post lung cancer.  It took me quite a while to recognize the patterns and causes of my congestive events.  I found the pattern by noting what was troubling me symptomatically on my phone calendar.  I started to see connections to seasonal events (pollen, flu, start of school and etc) and patterns of symptoms and progression.  Early symptom pattern recognitions helps me mitigate a debilitating illness.

Stay the course.

Tom

[Steff]

Tom, 

The times that you have had pneumonitis, about how long did it take for you to recover? I have been thinking that this may be her "new normal", but my mom doesn't want to accept that yet because it came on so suddenly (and honestly, I am good with her not accepting it because that means she is still fighting to get better).  Her pulmonary doc told her to be patient and let the steroids work for at least 10 days, but other than that, we don't have much of an idea of how long it takes folks to recover from pneumonitis.  At rest, her O2 levels are at 97-98 - the best they have been since her lobectomy in 2016. And during her pulmonary rehab, she would only need oxygen while on the elliptical machine (that machine is her nemesis!), all other machines, her O2 level was fine.  But now when she is up and moving (which may just be walking around the house), she dips into the mid-eighties.

I am also concerned for the plane trip as well - do you have any other tips besides a mask? We've not flown since her lobectomy and don't know if it will affect her or not, but she has her portable oxygen just in case.

I am very much looking forward to meeting you in person at the summit. Is your wife able to attend as well?

[Judy M.]

Saw my Pulmonologist this morning so will share what I learned. Was also put on Oxygen and steroids.  But what I learned that was interesting is that inflammation anywhere on your body will cause inflammation in your lungs. She doesn't think the Opdivo caused my lung issues, but rather the infection in my left hip. Hope that's true. Had your mom had or could she have an infection somewhere else. Pulmonologist said because everything flows through your lungs inflammation anywhere will cause inflammation in the lungs.

Judy M

[Steff]

Judy,

I didn't know about inflammation elsewhere causing inflammation in the lungs - that is very good to know.  My mom has lots of inflammation, not only from taking immunotherapy, but she also has Rheumatoid Arthritis.  I've never outright asked any of the docs what they believe caused the pneumonitis, but I know it could be a number of things besides the immunotherapy.  I just think that is the easiest answer for the docs.  There isn't any signs to suggest she has infection anywhere else besides in the area of the pneumonitis, but I will definitely be on the lookout during her next blood test. 

I'm happy to hear that they think that your hip troubles are what is causing your lung troubles and not the Opdivo.  One of my biggest fears is when my mom will have to be taken off of Keytruda for whatever reason (probably some dumb reason like pneumonitis) and we are faced with an alternative treatment.  I know it's probably inevitable, I just want it to be waaaaayy into the future!

Thanks for sharing your info with me, I appreciate it!

Take care,

Steff

[BridgetO]

About flying-- I have flown quite a bit since my lobectomy and haven't had any problems. But, then again, my lung function was execellent before my surgery and I haven't had any real problems with shortness of breath or low O2 sats since I recovered. I do tend to pick up respiratory infections on planes; this has always been an issue for me. One thing I started doing on my las trip, and will do ongoing, is wiping down my armrests and tray table with Purell wipes (got 'em in the airport). If I had a window seat, I'd wipe down the wall, too. The small pack of Purell wipes will go through security in your quart ziplock bag. I've started to do more hand cleaning on the airplane too, either with the wipes or with the tiny bottle of hand sanitizer I always carry. 

Bridget O

[Steff]

Great idea Bridget! I will pick up a small pack of wipes, thanks!

I am hoping she won't have much trouble on the plane as her lung function had been better since her lobectomy - they removed most of her emphysema when they removed the lobe.  But she will have her oxygen just in case.  

[Tom Galli]

Steff,

My bouts with pneumonitis are normally a 3 week affair.  Week one, I cannot get out of bed and my O2 sat rate drops to the low to mid 80s.  Inflammation makes breathing difficult and getting out of bed, very difficult.  By the end of the 2nd week I am generally recovered enough to take meals at the table  O2 sat rate is normally high 80s.  By the third week, I am able to return to most normal activities but I generally wait till my O2 sat rate is in the low - mid 90s.  I've never had supplemental O2 at home.

If pain in the suture area still occurs, it could be magnified by cabin pressure.  I can generally take a 2 hour flight without difficulty.  For longer flights, like my flight to DC, I will take pain meds about an hour before boarding the airplane.  I've never had shortness of breath while flying and I don't fly when I'm ill.  I also get travel insurance for vacation travel where I have a significant investment in pre-paid travel (like a cruise).  I get my travel insurance from Travel Insured International, a Crum & Foster Company.  The one time I had to use it, they paid for all my travel losses that I could document with receipts.  

Yes my wife is coming with me but will tour the sights in DC on Saturday.  Hopefully, we'll find each other at the reception.

Stay the course.

Tom

[Steff]

Summer (scorching) Update 2018

It's been awhile since I've posted an update, mainly because I have been struggling with feeling hopeful.  I am trying not to pin my hope on how well my mom is doing medically, but I am doing a lousy job of it! So, here's what's been going on....

Since February my mom has experienced shortness of breath when exerting herself, enough to require oxygen.  It came on instantly one morning while walking into pulmonary rehab.  Long story short, the shortness of breath has been blamed on many, many things including freezing temperatures, pneumonitis, possible fluid build up, etc.  She was taken off of Keytruda for about 6 weeks and given a hefty dose of steroids to help with what they thought was peneumonitis.  Her breathing did not get better, CT's did not change, so her pulmonologist got her off of steroids so she could continue with Keytruda.  Since nothing was being found, her oncologist wanted to jump to blaming Keytruda and wanted to take her off of the drug.  This was the first time that I really flexed my caregiving muscles and said no. I just had a gut feeling that since the shortness of breath came on immediately, that there was some explanation for it besides Keytruda.  I pushed to get her heart checked out. She had a stress test and other tests.  Another looooong story short, the bottom of her heart is not working properly. It is likely due to plaque build-up. The doc said that this is likely to be the culprit of her shortness of breath because both issues coincide when she is exerting herself.  I am keeping my fingers crossed that this is the problem.  She goes in this Friday to have her heart "cleaned out" and to possibly place a stent or two.  The doc says she may feel immediate relief after the surgery or it may take up to a week.  If she feels no different after 1 week. then it isn't her heart that is causing the shortness of breath.  So, please keep your fingers and toes crossed for my mom!  I NEVER thought I would be hoping for heart issues over other troubles!!! My oh my how lung cancer changes perspective!

Immunotherapy side effects:  She is having AWFUL nonstop itchy skin.  She was prescribed Benedryl at her appointment on Friday, we will see if that helps.

To bring a bit of humor to this - she felt that having to wear oxygen during the Jimmy Buffett concert last month really cramped her style and she wasn't able to properly participate in the "Fins" dance! So, she is really hoping to be off of oxygen by the end of August so she can be more free to dance at the Rod Stewart concert - God only knows what type of dancing she will be doing to "Hot Legs" or "Do You Think I'm Sexy"!!!!

Take Care,

Steff

 

[LexieCat]

Aw, won't it be great if worrying about her dance style is your biggest problem come August?  I hope the surgery relieves the problem.  My dad had a MASSIVE heart attack when he was in his late 60s, had bypass surgery and a pacemaker put in, and his heart was in good shape until he died (of an unrelated cause).  Advances in cardiac care are another area where modern medicine saves and extends lives.

Keep us posted--we will keep our fingers crossed!