Lung Cancer Support
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My dad got IMRT today!!!!!!

Thanks to SO many wonderful people who helped fight Florida Blue, my dad received a phone call today while we were on our way for his first standard radiation appt and they overturned the 5 denials!!!!! This would NOT have happened without those who fought for my dad and LCSM AND Denzie!!!!!! To all those who don’t know me or my dad, and fought for him anyways, I cannot thank you enough! Words will never be adequate to express our gratitude and to those who have written and helped me along the way with questions. My dad was in tears after the phone call and I have been in tears off and on. This IMRT means so much to my dad and us and honestly, today meant so much to my dad. I don’t see him cry much and he’s always so strong, but after that phone call today I have seen him cry more in one day than I have in years. His appointment was quickly cancelled at 11:30 am and rescheduled at 2:30 today for IMRT. Thank you to those for fighting to give my dad the best chance at living. And, Denzie, you were the catalyst to all of this. Thank you from the bottom of my heart!! 🧡 Everyone deserves the best chance they can get at FIGHTING and I pray this never happens to one more person!!!! No one should EVER be denied treatment they need!!!! I hope someone takes notice of this and changes are made for all those who will come after my dad in the future!!!!!!

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WOOHOO! That is wonderful news and we are ALL so happy for you and your Dad! Kudos to Denzie for sharing the details of who we needed to contact.

People matter!! We need to continue to let the insurance companies now that we expect to be treated fairly and get whatever treatment is most appropriate!!

I'm so HAPPY for you both, this news made my day!

Congratulations and best wishes,

Lisa

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Thank YOU, Lisa, for everything!!!!! It wouldn’t have happened without you all!!! This is an important issue - one that will not stop with my dad but I pray it will be one that will be fought with everything to show insurance companies this is NOT acceptable!!!!!!!!! I will continue to do my best to raise awareness and advocate for everyone. This just isn’t acceptable!!!

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So happy for you guys. Couldn't have heard better news today!!

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Thank you!! I about fell over when they called 25 min before his standard radiation appt and overturned it!!! It is the best news!!

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Lisa. I'm so happy for you and your dad. We all love you and your dad.please let us know how things are going I'm here if you want too talk about any thing I'm a good listener. Love Susie

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Thank YOU for all your help!!! You all are amazing!! You are very loved here as well!! Keep fighting - everyone deserves the best!!

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I'm so happy for you and your dad. I'm glad I could help. This morning I did a post and went public with it. Love Susie

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Hooray! I’m so thrilled for your dad and your family! As soon as I saw this I started to cry happy tears! I can’t wait to tell my family. We were all fighting for your dad!

Thank you Denzie for getting all of the information needed so that we could make our voices heard and advocate for one of our own!

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Thank YOU and your family SO very much!!! I’m so happy you responded and let me know!!! I don’t know everyone who fought for my dad, but I know it was a LOT of you, so I’m so happy I get to thank you personally!! I have tears again!!! What an emotional day today has been!!! Please know you made a huge difference and I am forever grateful!!! And for someone you all do not even know makes this even more emotional for me - I will continue to always do the same for all of you, no matter what and where I can. I won’t ever forget this.

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Lisa the 200 shares you had got it started. We just came in with the final punch. Every single tweet, post, email and prayer mattered. Every single one. It was an honor to help. No one fights this alone.

I’m buying a lottery ticket.

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Every. Single. One. Mattered!!!!! You are so correct!! Please share my gratitude and thank you’s to anyone you talk to, that I missed!!! I wish I could thank everyone personally but I know more people were involved than I will ever know. To those who prayed, to those who tweeted, fb’d, emailed!!! To everyone who has offered support and help to me on here with my many questions! Every single one!!! And yes, buy a lottery ticket!!! 🧡

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I’ve already tweeted my thanks to FL Blue and sent a brief thank you to the CEO. I feel like we won the lottery already. I really thought we had a better chance of winning the lottery than changing minds. So very happy for your family.

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I have thanked Florida Blue as well! And I was thinking the same thing earlier - we already did win the lottery! I honestly didn’t think today would happen either so that’s why I’m just so in awe over this still! I started this fight about 3 weeks ago and it took everyone together to make it happen! It was all worth it!

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That is awesome!!

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So happy for you and your Dad!!! And thanks to Florida Blue for doing the right thing (with a little help). We are strong when we stick together! Kudos Denzie!!! We need to get you a super hero’s cape!

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I agree. She is a super hero. She has given me valuable information in the past.

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What wonderful news! Praise God and all the great people on here who helped your dad. I bet his appetite will pick up after he gets the treatment he needs! Your post really made my day. Sending love to your dad and you.

Judy

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Thank you, Judy! I told my dad yesterday about your husband visualizing Pac-Man during his radiation and told him to do the same thing. I just reminded him again today. Right before he goes in I say “Remember Pac-Man!” ☺️ God bless you!

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And God bless you and your dad!

Judy

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This is wonderful news and it just proves that if we stand together anything is possible. Congrats and good luck and health to your dad 😊😊😊

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Thank you!! Yes, there is power in numbers and many strong people!! All my best to you!!!

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Keep us posted on his progress. I think we’ve all adopted him as a second father lol.

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Aww, thank you! He would love to adopt you all as well! 🧡 He started coughing up blood today for the first time EVER. They think it’s a response to the IMRT. I pray that’s all that it is.

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Totally normal from any type of radiation. I started coughing up aliens and some were the size of grapes and full of blood. You don’t realize how painful coughing up blood can be till it happens. It’s very irritating to the throat and esophagus. Hopefully they are giving him the magic mouthwash to help with that. I’m glad he’s doing ok and things are getting better. Please keep us all posted. Be well! Xoxo

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Thank you for putting our mind at ease!! No, he doesn’t have magic mouthwash and I mentioned that yesterday to them so that’s next. The on call radiation oncologist last night told us the clots etc are bits of tumor and cancer cells dying and coming up and out - I have tried to verify this online but I see mixed info. Do you feel that is what you were coughing up during radiation - dying tumor and cancer cells? Not fun to go through but sounds very positive if that’s actually what it is coming up and he’s responding well to it! He’s on the lovenox blood thinner too.

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I have a picture I could send you that would make you gag...yes, it’s definitely dead tissue and tumor coming up. It’s a good sign. The blood thinner will help him to pass the dead tissues. They come out everywhere. Even in urine so tell him not to be surprised if that happens. Blood is very irritating...probably because of the iron...and it can hurt coming up and out. Get the magic mouthwash. It tastes terrible but works wonders. Xoxo

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Ohh thanks for the heads up! I let him know! Oddly, he didn’t get the “things that may happen” pamphlet until after the blood started, which would have been helpful before! They called in the magic mouthwash yesterday - insurance didn’t approve it. 🙄 We will pay out of pocket for that one so he can have it. Hope you have a great weekend. 🤗

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Awesome news!

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When I heard the news, it made my day. I hope your dad starts to feel better very soon.

Peg is right, Denzie needs a superhero cape.

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Thank you! And I agree! You all are an amazing, strong group here. All my best to you and may you continue to heal!!

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So very happy that this happened for your dad. Hats off to Denzie and everyone who spoke up!

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Great news. We cancer patients have got to stick together. Denzie, maybe you started a new movement.

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Praise the Lord! God is so good!!

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Yes, He is!!

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HOORAY!! That is such great news!! Please keep us updated on how your dad is doing. So glad that the insurance company gave up fighting - sometimes you just have to keep pushing despite their rejections, and get others involved! Praying all goes well now that your dad is getting the proper treatment,

Lauri-Anne

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Thank you, I will! I check in daily anyways to see how you all are doing and read the posts so I will be here. There is strength in numbers and fighting for a cause. And you all are some of the strongest fighters out there! Thank you for your prayers! God bless you, Lauri-Anne!

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Such wonderful news and very happy for you and your dad. I pray for the best for you both.

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Thank you! All my best and many blessings to you!

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Sooooo, happy for your dad, mom and yourself. These folks are wonderful and moved a big mountain. Will be looking forward to hear how things are going.

Gloria

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Yes, Gloria, there is strength in numbers! How is your husband doing? You both stay in my prayers.

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Lisa,

Thanks for sharing houghts and prayers. Ed just completed his 5 monthly treatment of Opdivo this week and so far so good. He was tired

on the second day but really not bad. He has started Respiratory Therapy and will have about 25 sessions. He is hoping to get his balance back and not use Walker. Also learn to stand straight and breathe deep and correct. He is a mouth breather, normally. I have chosen to wait in the reception area and let the therapist work with him alone. I think it makes him more responsible. He is working hard. He wants to fish again.

I heard from a nurse that once a patient is stable for 2 years they discontinue the Opdivo. I thought that was interesting. Plus, I asked about giving Opdivo and Keytruda. I think he thought I meant at the same time and said the dosage and timing is different. He did not say anything about once you have been treated with one you couldn't try the other if the first wasn't working.

Looking forward to hearing your dad's progress is going well.

Gloria

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Very happy to hear he is doing well on Opdivo! So the longest one stays on Opdivo is 2 years? That is interesting as I thought you stayed on it indefinitely as some have been on Keytruda longer.

Thank you for asking your oncologist about Keytruda and Opdivo. I hope my dad’s oncologist is willing to change his mind on it otherwise we might have to go for another opinion later on.

I will be interested to know how your husband does with respiratory therapy. It is on my list for my dad as I think it might help his SOB and rebuilding his lungs a bit etc. He gets winded walking short distances and the sitting more than walking has de-conditioned his lungs. I just don’t know when he should undergo it - after radiation - during his next chemo treatment or after or what. I got my dad an appt today with a nutritionist and a speech therapist to help with his gagging. Prayers for your husband to regain his balance and be back to fishing soon!

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It was 2 years after he is stable that they would hold off the Opdivo. There is a lot I don't know about all of it. I learn as we go and instinctively make the decision then. I think if your dad can walk some everyday, he should. With a cane or Walker. You are correct about the muscles and then he will have to learn to walk again. It doesn't take long to lose the muscles. If your insurance allows, a physical therapist might come in to show him some exercises he can do from bed. In fact, I bet you can find them on line. Leg exercises I mean. After being in bed for a few weeks, Ed had to learn to walk again, but they started him on basic leg exercises first.

About the lung expansion, I am sure folks on here know what it is called but Ed has a plastic thing he blows into to expand his lungs. The only name I see on it is "airflow". He just blows into it as frequently as he remembers or I remind him. I am sure any surgical or medical supply store has them. Can't help with gagging but someone on here might be able to help.

I don't know what others will suggest, nor do I know what all types of Respiratory Therapies do. There are no breathing machines where he goes but I believe they do have them and Ed might need to do that next. But, you would need a doctors order and it might be too soon for that. He is probably going to be very tired and needs his strength just now to start healing. Home Health care has helped me a lot a times. They have nurses, physical therapist and occupational therapist to help you. They will come to your home to draw blood for test, they will come and do X-rays if ordered. The nurses make as many trips to your home as needed and are a wonderful go between for you and the doctors. They would probably be help with his gagging and other problems he is experiencing. I have counted on them many times and been grateful for their help. You might ask around for name of a good one in your area. You will have to have a doctor for this I think. Probably his general practioner.

It sounds like those other therapies might be a little too aggressive for him as he has just begun treatment. You might bide your time and see what you can do to get him comfortable right now. Did I read you had tried the CBD oil? Ed uses that every day. For over a year now I mix up an ounce or two of lemon concentrate juice with sweetener and water ( makes about 6-8 oz) to put by the bed for night time cough. It seems this loosens up the mucous as he has COPD.

Everyone says lemon and water are best first thing in the morning.

That is just my thing for him.

Ed has gone from Walker to Cane today. There s always hope. I know you and parents know that. I believe your dad is John. A special love sent his way.........stay determined and positive.

Glora

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I was looking into pulmonary rehab for him, which they said will teach him to breathe through his SOB etc. maybe this is different? I’m not sure but I figured wait to do it after radiation etc. We have to clear up a few other issues first, especially ones I’m concerned about before he starts his second line treatment, which I suspect will be hard on him. And today we found out a lot of his dizziness is orthostatic hypotension.

We were looking into home health help but he wasn’t fond of the idea yet. If he had his way he would pretend this all wasn’t happening. I can recall maybe 2 times in my entire life where he said he was sick, so this is something he is having a hard time with and unfortunately isn’t ready for outside help. Maybe in the future - I can only imagine what a huge help it is!

He has tried CBD oil and Marinol. In the beginning it worked for him and then he seemed to not feel as much from it. I think we need to try other brands. Thank you for the lemon tip! That’s helpful to know. He does have mild COPD.

Going from walker to cane is quite an accomplishment! I can’t wait to read the post from you where you say your husband is back to fishing! There is ALWAYS hope and he will get there! 🧡

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Lisa,

Tell your dad that Ed is 6'3, taught medics in the army at Ft. Sam Houston and was never sick until he quit smoking after 60 yrs. or more.

He was not an easy patient either, nor did he want outside help. He will be the first to tell you how grateful he was to have another medical person to give us an opinion or suggestion. I was also a nurse in the distant past but it helps to have someone come in with fresh eyes, so the help is for you as well as him. It is not the same as Hospice. However, I have been told that Hospice comes in to help everyone who needs a day to day hand, not just terminal patients.

You will no doubt know when to call someone in but it really really helps to know and understand his progress.

Yes, fishing is a big motivation.

Thanks,

Gloria

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