Hopeful, confused and sometimes pissed off

[Niess]

🤗☺️ A hug and a hello to everyone. I'm new here. Been battling for almost a year now, stage IV with masses from my neck to the back of my knees. Biologic med, Tecentriq, every four weeks has shrunk or eliminated my tumors. Only activity left is still a prominent spot in lower left lung and minimal activity at shoulder, L2 and knee. 

I have so many questions and although my oncologist is a really great and kind man, he simply doesn't have answers with this being a newer treatment option.

Most stories I've read online show people having little or no side effects. I'm wondering why I'm going through all kinds of crappy side effects. The doc responds that the side effects are the lesser of two evils but I'd like to find a doable way of living in spite of the side effects.

Thanks for reading, I wish you well!🌻👾🌻

[BridgetO]

Hi Niess and welcome. I'm glad you found us. I'ts great that the Tecentiq is working for you and sorry you're having side effects.  I see you'v posted on the Immunotherapy forum also and  I hope some members can share their experience with Tecentriq. 

Bridget O

[Niess]

Thank you Bridget. I'm hoping for input.

Have a wonderful night.

[LouT]

Hello Niess,

I'm sorry you have to be here, but glad you found the forum.  My journey with LC was resolved with surgery so I cannot give you any useful input on chemo, but we have some great folks on here who do have pretty deep experience and I'm sure they'll be responding pretty soon.  For my part I just wanted to say hi and let you know you're now part of my prayer list.  You're already one strong woman to be battling for the past year and I hope you'll stick around and continue to share as you work on your recovery.

Lou

[Niess]

Thanks, I hope things for you after surgery have been going well.

I'm grateful I found this group and grateful for the prayer list.

[LouT]

Niess, 

I'm really blessed, I workout six days a week do 5 miles each day, weights and am now adding Yoga to the routine.  Like Curt, I've recovered almost all of my prior function and am now on a schedule of 6-month scans to monitor for any recurrence.  There can be life after this disease so hang in there and we'll be here for you.

Lou

[Niess]

Thanks Lou. 

The doc mentioned immuno may be a maintenance thing. I'm hoping to not have have treatment for several years.. I was accepting of passing and of fighting but that here's you life back.....kinda with ongoing inability to do things is a strange deal. I am accustomed to being active and a doer. Gotta admit, it's way way way better than chemo was.

[DFK]

Hi Niess,

I have Stage 3b Non Small Cell LC. I am 67 years old. I sailed thru chemo and radiation. Usual side effects but very manageable. I was fortunate that I was able to continue with my physical activities of babysitting the grandkids, meeting up with friends for lunches and hikes, and playing music with my seniors group as well as the usual household responsibilities. I think I pushed myself because normality was my denial of reality.

Of course, I got a huge dose of reality when my chemo and radiation was over, then it hit me, the fatigue and weakness, and like your heading says so eloquently, plain ole shi##y. I would get so short of breath just taking a few stairs....I was aghast. With the ending of my chemo and radiation, I started Durvalumab immunotherapy, intravenous every two weeks for one year. My last dosing will be this January 2020. 

So I had to figure out, was my fatigue and weakness post chemo and radiation or the beginning side effects from immunotherapy. I immediately requested a Cardiology consult, another Pulmonology consult and tracked my tolerance doing normal chores and any activity that seemed to crush me. If I could handle 10 minutes of activity  one day and 11 the next day, I considered it progress and used that as encouragement that I was making progress. That kept me motivated to keep trying to get back to my prior functional and active level. I plugged away everyday pushing myself. If I didn't push myself, I just plain got depressed and sad and entirely overwhelmed.

Bottom line, I will never be the same active person I was before my diagnosis. Chest x-rays have confirmed some scarring post radiation and most likely fibrosis. I just don't oxygenate well. My heart is in good shape but I still get a very high heart rate, in the 140’s with exertion and exercise.

I started an exercise program, primarily bike riding. I started out slow (Yes, all of 10 minutes) and increased my riding as I got stronger. 10 months into immunotherapy and 11 months post chemo and radiation, I can meet all my daily responsibilities, lead a very active social life and ride my bike everyday or every other day for at least an hour. I do have to push myself because of my continued fatigue and generalized muscle weakness and poor oxygenation. I rely on Motrin and Tylenol almost everyday to contend with muscle aches and pains. And if I am having a very bad day, I have my “as needed” chill pills to take the edge off of my pity party for one so I can dig myself out of sadness. My arsenal includes drugs, tenacity, addressing and reporting symptoms as soon as they rear their ugly heads so I can continue to be active, and engage as fully as I can. This roller coaster ride ain't no picnic for sure but it's the ride I'm on and I'm trying my best and isn't that all that we can ask of ourselves? 

Take Care Niess, your journey so far sounds like a really rough one but it also shows how tough you are to have made it this far. Congratulate yourself on your strength and use this forum to ask away for any support you feel you may need guidance in or concerns and questions. This forum has educated me on so many levels and I do feel supported and understood.

With Blessings and Gratitude, DFK

[Rower Michelle]

On 11/23/2019 at 3:27 PM, Niess said:

I have so many questions and although my oncologist is a really great and kind man, he simply doesn't have answers with this being a newer treatment option.

 

Hi Niess,

Welcome to our group.  I think we all understand what you are going through.  I was diagnosed Stage IV too, initially started with chemo and then transitioned to a targeted therapy (pills). When I presented for the education appointment, the nurse practitioner said, "I really don't know what to tell you about your medication, I've never prescribed it before".  Oh uh.  My doctor has three other patients like me, which is considered a "huge" practice.  So I get it.  No one can really answer our questions as these treatments are so new.  Side effects and appropriate management are not well documented, as we represent the first round.  Bottom line: side effects suck.  I have an issue with some social media content when well intended survivors paint an overly rosy picture.  There's nothing rosy about lung cancer as DFK so eloquently puts this, it's sheer determination to live our best lives. 

For me, I located an integrative oncologist, he never heard of my targeted therapy either, however, we came up with a plan to try and knock down the side effects.  Acupuncture, Myofacial Release Message, and Tai Chi have helped along with some targeted supplements and dietary changes.  On the days when the fatigue is rearing it's ugly head I think about Lou walking six miles and Curt power washing his deck.  Exercise, even if it's only for a few minutes helps to take the edge off of the fatigue brain fog.   In this forum, we've got tips, tricks and sheer perseverance.   I'm glad you found us. 

Michelle 

[Niess]

WOW DFK, I loved reading about your journey, your life and very much appreciate your inspiration. Treatment every two weeks and almost about to kiss that good bye, congrats to ya kind lady. I declined the every three weeks and requested once a month as my treatment facility is 75-80 miles away.

Thank you for taking the time to post. You gave me lots of positives to keep in mind and also encouragement to overcome this part too.

I'm our source of income as my husband is disabled but he still managed to hold my hand and love me to pieces through this craziness. I continue to work full time through this doing an office job.

Although my journey began with a completely terrible oncologist, I have found a great oncologist and that was a real game changer. I think the first guy just figured there was no point and I was too far gone at the time of my diagnosis. 

I went from a healthy 5' 110 lb 47 year old gal to a tumor ridden wheelchair bound 96 lb mess in a matter of a couple of months. Unbeknownst to me at the time, the tumors were chewing on my L2 and my hip bones causing excruciating pain, fracture and swelling that made my right leg, hip and foot look like it was from someone that was 6' 250 lbs. I have no idea if all the other tumors did anything but don't think so.

Like I said before, I'm so grateful for so many things including being able to walk on my own and bath myself and continuing to keep my job and keep our home. I didn't ship out to Afghanistan in 90 when I was enlisted so I didn't endure true human evil which coulda happened to a petite blonde enlisted female. I've walked away from several car accidents (no girl driving jokes now, they were almost all rear ender's by uninsured drivers..lol). We have 26 years together, live in the country where we love it and have a loving son, grandson, close friends and big happy fur kids. So thanking God daily has been going on my whole life.

What gets me is learning to live life with cancer not after cancer. Diing is the easy part, living and trying to navigate each day going from the hyper active doer I was to exhausted all the time with pain and whatever weird stuff pops up that day is the part that feels like a tease. Cool cancer is holding steady and ya get to exist and laugh but ya can't do shi_. My brain says go go go and when I try to do that, my body says F you......lmao

I can make fun and joke but I expect and want more rather than trading one yucky situation for another. Does that make sense?

I tried starting chair yoga and my low back swelled, thinking that may be caused by the L2 fracture. I thought maybe I'd try walking but the one chemo drug caused permanent nerve damage to my feet making it feel like the bottoms of my feet are like walking on big bruises. Yep, one minute laughing and the next whining & confused.

I'm totally open to suggestions at this point. I just gotta come up with a physical plan that works with being in the middle of the sticks and doesn't mess with my work schedule cause I gotta get through my work days and keep my job.

Thanks again, for reading and responding. I wish you well. 😉🌻

[Niess]

THANK YOU MICHELLE!! 😁😊😀

I'll try to get up from the computer more often and jump in the hot tub to ease the aches and ouchies so I can walk around more. 

All you guys have given me an unrealized and much needed boost. Hot damn and thank you.

Wishing ya well.

 

[Steff]

Hi Niess,

I am happy to hear that you are getting a "much needed boost" from our responses to you.  These forums provide the same boost for me, as a caregiver.  I see many of the same frustrations and concerns that you have, with my mom.  Although there is a significant age difference, the two of you are similar in several ways, especially when it comes to getting pissed off about side effects from treatment.  And although my mom's treatment journey is different and her side effects are different, the frustration is the same.  Her biggest issue is getting out of breath with any type of exertion - even just walking to the bathroom.  She has always walked quickly and has always been a go-getter.  That has had to change and she hates it.  She hates having to slow down and hates how cleaning the house or mowing the lawn takes her 2 days instead of 2 hours.  And like you say, it is better than the alternative, but it still sucks.  

I am sorry you are having to endure these side effects and sorry you have the added stress of keeping a job to keep your family afloat.  My mom was lucky in that she didn't have to worry about working (she was retired) or mounting medical bills (she has yet to see a bill from 4 years of cancer treatment - good insurances are a life saver).  She just had to care for herself and my dad (he is disabled).  We didn't think about the struggles of young people having to deal with work, kids, and mounting medical bills until we got to know the lung cancer population more.  That added stress is enough to drive someone crazy.  But here you are, LIVING your life despite lung cancer and the side effects that follow.  I am happy you are here with us and hope that you continue to get what you need from this group.

Take Care,

Steff

P.S. - I know you said you didn't want any female driver jokes, but how about blonde driver jokes?? I only bring this up because my first car had a license plate frame that said: Caution, blonde behind the wheel (I was bleach blonde for most of my teens and early 20's).  

[Niess]

THANK YOU Steff and Michelle!! 😁😊😀

Everyone here has been such a huge help. I don't feel quite so nuts anymore....tee hee hee

And Ms. Steff, I'm a natural blonde or at least I was, we'll see when my hair comes back what I'll be in the future. Bring it on with the jokes cause I love to laugh. 😀

I'll try to get up from the computer more often and jump in the hot tub to ease the aches and ouchies so I can walk around more. 

All you guys have given me an unrealized and much needed boost. Hot damn and thank you.

Wishing ya well.

 

[DFK]

Niess said, “What gets me is learning to live life with cancer not after cancer.”

Truer words were never spoken. Do you realize that those few simple words are probably the key to any sort of "normalcy" we all can expect to have. Learning and adapting to WHAT IS and not WHAT WAS. 

I have to giggle at times at my naivety when first diagnosed. My Oncologist "threatened" me with a gastric feeding tube if I lost 10% of my body weight. Me being the anal OCD person that I am, I calculated that I could lose up to 13 lbs over the course of treatment. I am 5’7” and I used my 130lbs as a baseline weight. The challenge was on and I figured I had a tough road ahead of me but they did not know who they were dealing with. 

Side note: I elected to receive all of my treatment and follow up care in another "bigger" city. My husband and I would fly out Monday morning and return home Friday afternoon. We live in a very rural provincial setting, options and choices were limited, resources poor. 

So anyhoo, to continue with my saga, I am now in this big city with tons of food options. And I totally go for it. Bring on the pork chops with gravy and rice, followed by a coke float with a double scoop of ice cream and a pie to top it all off. I was eating like that 3x/day. I took nausea pills like it was candy, dovetailing Decadron when needed and followed all the recommendations for esophageal hygiene. Prior to all this bingeing, you'd be lucky if I could finish half of my meal. I mean, I was the skinny girl who hardly ate and I was admired for my flexibility doing and sometimes teaching yoga and tai chi classes. I was the health food plant based fanatic.....well not anymore! My missive worked. I did not lose an ounce during treatment and my oncologist couldn’t believe I could still swallow without difficulty. I would almost cry to my Radiologist that I never have eaten so unhealthy. She told me to get over it, do what you gotta do, and I was blessed to be doing so great. 

Now dear Niess, I am a 154lbs and for the first time in my life I have belly fat. Appears that my stomach stretched and I have developed a late in life love for high caloric carb laden junk foods!!!! And though I complain day in and day out about being so uncomfortable and "heavy", my friends still want to b*tch slap me because I still can pull off a pretty svelte look. My oncologist rolls his eyes when I complain about my weight gain....is it the immunotherapy I ask? My friends answer, "Duh, it's your piggish diet my love".

I guess after this long and somewhat light look at life in the Cancer lane, there are moments that are so absurd that you can't but help reflect on how in the world did we get from point A to point B......by just putting one foot in front of the other, or in your case, one poor bruised and sore foot in front of the other. Your decline from diagnosis feels so painful and debilitating but you also state that you can now attend to your basic needs and what the heck woman, you're holding down a job to keep your financial life from collapsing. Girl, I give you so much credit. At this point, you should have a whole cheering section in your corner.....carry on, do what YOU can do, congratulate yourself each and every day for the fight and spunk that you obviously have in you. Those boxing gloves aren't ready to come off yet. 

Take Care, DFK

 

[Niess]

Hi ya lady. You're too funny and your story sounds familiar.

We are in the sticks 75 miles North of Sacramento, where we chose treatment for the same reason as you did.

Wow, I wouldn't wanna give up my sleep number for M-F treatment outta town. Our 100 lb and our 85 lb puppies wouldn't like us being gone either. That's another reason I opted for once a month treatment rather than every three weeks like doc wanted.

I am 5' even and always weighted around the 110 range and was a strict vegan since 2009. Bring on treatment and I dropped to 95 lbs. Doctor said eat everything and anything ya want. Do whatever ya want and enjoy as much as you can. So I did. AND boy howdy did I go for it.😜😁

It was a green light for me to eat everything and I did. Now I'm suffering from a tummy that rolls over (which I've never experienced before) and am up to 126.

Now I'm like, I really like food and have developed the bad habit of late night eating before bed that I gotta stop but so enjoy....lol

Gosh, thank you. Sitting here typing this, sharing it with my husband and laughing is such a blessing and so uplifting. You Rock sister, diggin it for sure.

Wishing ya well 🌻👾🌻

 

[DFK]

Niess....laughter in your heart is a magnet for gratitude, blessings and a big fat belly laugh.....and that ain't no jive since we both got dem dere belly fat now! 

Hugs, DFK

[Lin wilki]

WELCOME Neiss!  So happy to meet someone who can laugh and share at the absurdity that is now our life!   After diagnosis (stage 4 adenocarcinoma - both lungs) I went straight into a clinical trial   Stereotactic radiation, then immunotherapy.  I thought I couldn't be luckier -  no chemo!   6 months in - I have so many side effects.  Rash which I have meds to keep at bay - terrible cough, shortness of breath,dry mouth, constipation., terrrible muscle pain - shoulders and back primarily.  Fatigue level is also fairly high.  So tomorrow I have an appointment with the PALLIATIVE CARE department.  Hopefully they will have some suggestions for me.  If there is something useful (other than high doses of ibuprofen everyday) I'll pass it along.

I remain optimistic in my treatment, but sometimes it's just hard to accept this new, less active life!  So, keep on posting and everyone here can lift you up!  We are all in this together

 

 

 

[Niess]

Hi there Lin. Damn, dodged one bullet only get stuck in a pile of shi_. I'm so sorry about your side effects.

Hey, I got yucky skin stuff where my skin itches with slight rash on my face and head and my skin bleeds quickly when I scratch.. Gotta share.....classic coconut oil is such a God send for all kinds of skin crap. I had severe burnt skin on 90% of my bod as a reaction to chemo and we tried so many things but the coconut oil was so nice to my body. It's cheap and in solid form is less mess and it melts in your hands and has a cooling and soothing effect.

I also, recently, started trying CBD and THC MINTS. The ones with 1 to 1 or 2 CBD to 1 THC. Calmed the head/scalp sweating side effects and is helping with night time pain as I'm trying to not use too much of the pain meds. By the way the magic mouth wash they typically prescribe is so totally and completely nasty. Like you wanna vomit gross. I took what like help I could get with Act Dry Mouth mouth wash.

Keep posting updates please, I hope the palliative care helps ya. 

Sure wishing ya well and praying things get to a manageable absurdity rather than the shi_ show you're having now. I'll hold yer hand in the virtual sense. 😉☺🌻

[LouT]

Niess,

I told you there were some super folks on this forum, didn't I?  Stick around and we'll all go through this with you.

Lou

[LUNGevityKristin]

It looks like you have already received a very warm welcome!  I just wanted to suggest Ina, a personal intelligent nutrition assistant that might be able to suggest some things to help you feel a little better. It's a free service available through texting and you can get recommendations for foods to help reduce your specific side effects.  Here is more information if you are interested: https://lungevity.org/for-patients-caregivers/support-services/meet-ina-your-personal-intelligent-nutrition-assistant

Glad you are here and being lifted up by this great group!

[Niess]

Thank you Kristin, much appreciated. This group is certainly a bunch of amazingly awesome people.

And to Lou.....

Yep, Lou, you were right on the nose. If I could tap that comment "like/heart" emoji repeatedly, I certainly would do just that.

Wish'n ya well