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Durvalumab


Robert Macaulay

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Good morning! 

I wanted to share my CT results with you guys. This was my first scan since starting treatment in April (I'm getting treatment monthly, so this was #4 for me, which I guess would be #8 if I was going biweekly) and my tumor is down to 1.3 cm. 

I started at 5 cm back in December 2019 when they found it,  chemo and radiation took it down to 3.8 cm, and now I'm down even more. I'm so happy with these results! 

I had hypothyroidism before starting any of this journey and my levels were jumping all over the place, but seem to be leveling out now which is good. No other side effects to really report aside from a sour stomach in the mornings which my onc is not too concerned with. Treatment #5 is on Thursday, then more waiting!

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Hey all! I hope everyone is doing well. 
 

I had a question about side effects, wondering if anyone experienced these. I find about a week or so after treatment I get light headed often and have to remember to ground myself before standing up too quickly. Anyone else? I’ve also noticed that I bruise super easily now. None of them hurt, but my legs look like I’m a 4 year old who’s been climbing trees and running around all day! 

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  • 3 weeks later...

I see a lot of new names here and not many of the old "Durva Club" members which I hope is a good sign that Durvalumab worked for many. I did do a member update elsewhere in the Lungevity forums, but I wanted to post here as well as I spent so much time here over the past 2 years and met so many great people here. I still stop by here from time to time to check on you all. I would name names, but I don't want to leave anyone out because so many have been an inspiration and provided support, even during those "dark times". You know who you are!

My Update:

Diagnosed NSCLC 3a in May of 2018 with initial treatment being Concurrent Chemo/Radiation which was then followed by Immunotherapy. After 18 Durvalumab Infusions my CTs indicated probable recurrent cancer in main tumor and possible additional lymph node involvement/progression. Due to indicated likely progression, the Immunotherapy infusions were stopped. From subsequent NGS Testing (Tempus) of a biopsy tissue sample I discovered that I was PDL-1 Negative and EML4-ALK Positive. In October 2019 I started Targeted Therapy with Alectinib. Having had several CT's Biopsies, and PET Scans since, each indicating less indication of progression, the findings of my latest CT last week now read:  

No convincing signs of recurrent or metastatic disease in the chest. Postradiation fibrosis of the right upper lobe as described previously noted surrounding groundglass changes and nodularity of the right upper lobe has resolved and was probably related to postradiation pneumonitis. Mild scarring noted in the lingula, otherwise the lungs are well aerated. No new mass, consolidation, pleural effusion or new worrisome nodularity.

A great 64th birthday present!

Hope all are well.

RonH

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Oh my gosh, what an awesome "alert" I received this morning.....way to go Ron, congratulations. I do remember how devastating it was for you to get yanked from Durvalumab and the rigors you went thru to be in the Alk+ targeted therapy club. Awesome to get an update, and a miraculously beautiful update at that. I have been MIA from Lungevity, living life full and robustly well (my doctors words, not mine) and like everyone else, having my medical dance card emptied and fairly blank in this Covid environment. This month marks my 2 year anniversary since diagnosis of NSCLC Stg 3b and I'm 7 months out from completing my year of Durvalumab. Last Cat Scan in May, NED. And though I have been gifted with NED throughout my journey, like the ghosts of Christmas past and Christmas future, the memory of what was, and the haunting of what could be, is never far, always present as a reminder of my membership in the club no one wants to be a member of. I have learned to live with these hauntings, as a gift, to enjoy every blessed moment, to the best of my ability. Wishing everyone another step towards health, love and happiness.

Blessings, DFK

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Thanks for sharing. Inspiring and aspirational story. Stage 3b and halfway through 26 projected Durvulamab course. Last scan 3 months ago and another planned but not yet scheduled . 50% shrinkage of Primary lung and nodes not remarkable upon it seems 

blessed that side effects been minimal though recent weeks mildly intrusive muscle and small joint pains . 12 months since unexpected diagnosis and excited to have beaten the 8 month survival odds to be able to walk my daughter down isle on 22ndAugust. It seemed such a far away goal at diagnosis and yet here we are with a positive future based on all your reported successes

 

kia kaha from New Zealand .Remain strong , positive and eyes on the future possibilities 

 

Grahame 

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Good to hear from you too Opal and congrats on your 2+ years from diagnosis....and to see Bridget and Grahame posting, it's like old times again. I so remember being lost in an ocean of questions and fear when I happened upon Lungevity. We were the pioneers, embarking on this very new immunotherapy drug. We learned along with our physicians and us Durva's picked each other up when we needed picking up and carried others when we could. We weathered the calm seas as well as the oceans squalls. That's one thing I remember so vividly, that time marches onward no matter what the day presented, and that one month easily turned into three and five and eight and then the twelve months were over. For those still on the Durvalumab train, know that there were others before you that had the same questions, and fears and annoying and sometimes debilitating symptoms. But also know that we are your inspiration for a life beyond Lung Cancer......

 

Hello to Tomm, I still love your one liners, I bow down to you OH MASTER OF GIGGLES, to Tom Galli for his eternal and non ending support, Do you ever sleep? and Rower Michelle for her spunk and humor and "let's get it done" Jersey girl attitude, I want you in my corner!!!!, Happy Birthday Ron, and like Opal said, many, many, mucho more to come, Roseann, you go girl, good to see you're still slugging away, admirable fortitude, I'm impressed....and Barb1260, My doc said the same thing when I was done, "Get out of here and go live your life". How blessed we are to be able to do that.....strong words that meant the world to me. Opal, your gentle and Gaman spirit comes thru loud and clear in your postings. You are loved.

And to the newcomers that I haven't met, you're in great hands. Carry on

Blessings, DFK

*Gaman (Japanese)-"enduring the seemingly unbearable with patience and dignity". The term is generally translated as "perseverance", "patience", or tolerance.

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Congrats to all of you guys. I love reading all these positive stories!! It really gives me hope! 
Tomorrow is treatment day for me, I’ve lost count/it’s too much to do the math on what treatment I’m on with the switch to monthly! Lol 

I think this is treatment 5 of my double dose?! 
 

either way doing well, no real side effects aside from a sour stomach in the morning. 🙈

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  • 3 weeks later...
14 hours ago, Rower Michelle said:

Hi Durva Club Members! 
 

If you have a minute please send a warm welcome over in the Intro Section to Jim (JMP from California).  Another Durva for your family here.   Hope you all are hanging in.  Thanks! 
Michelle

Thanks Michelle! I was wondering if I ever really posted anything. How do you post anyway? The only way I can find is to quote.

I am so glad I found this form. After reading a lot of messages I went back over and looked at my various reports. I had 6 weeks of chemo and radiation. Both the radiation and medical oncologist told me that because I was so healthy they were going to hi my hard, and I guess they did. I went from being very active, with a goal of walking 10,000 steps a day, to the point of being barely able to walk into the last radiation appointment. Good news though, scan showed a 55% reduction in tumor. After a 4 week rest, I was still hardly Ble to function I had my first round of Ianfinzi, and for the  next 10 days had absolutely no energy. Last Friday was the worse, not only could I only move from chair to bed, but for the first time I became very emotional. Then, Friday night I did sleep 11 hours and woke up a totally new person with what see.ed like unboundless energy. I am an ious to take my labs tomorrow to see if anything has changed. On Tuesday I will get round #2. I am scheduled for every 2 weeks now, but oncologist says may go to e ergy 4 weeks.

Thanks to everyone's post that I have read. They have really helped me to understand my lung cancer and what to expect.

Cheers, Jim

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Down below where it says "quote" there is a box that says "reply to this topic." That's where you would type your post. You don't have to quote to reply. 

Also, up top, there is a big orange box that says "reply to this topic," so you can do it from there, and next to that box is a link to "start a new topic," which allows you to start a brand new thread on a topic of your choosing.

You'll get the hang of it. :) 

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Hey guys. Took a break from all things cancer since my last CT in July. Between Covid, working at home the last 6 months and just cancer life it’s mentally exhausting. Anyway I hope all are doing well and LexieCat I’m sorry you’re back in treatment. Can someone tell me how you Appeal a test denial?  What is included and can the social worker/cancer liaison help with it?  The insurance company Approval place asked me if I had every written note and test result to send in with the appeal? Was this a scare tactic? Almost 2 years of medical records!  That seems ridiculous. 
 

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Hey Michelle. The PET scan of course. Said not medically necessary because I’m not in treatment but without it can’t tell if main tumor is dead. Docs office did a peer to peer and was still denied.  I guess they would rather wait until I get to stage 4 then pay hundreds of thousands for the next round of treatment. 
How are you doing?  Still in the targeted therapy?  

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Barb, 

All is going well here. All those years I worked for the insurance companies, we had a saying, "working there we'd step over a dollar to pick up a dime".  The PET scan denial is another illustrative example of simple stupidity in the name of "cost savings."  A couple of thoughts: 

1. What type of contract does your employer have with the insurance company?  At risk (health insurance is responsible for paying the claims in exchange for a per member per month set fee) or self insured, otherwise known as an Administrative Services Organization (the employer pays a smaller fee to the insurance company to administer the benefit on their behalf and the employer pays all claims).   

2. If ASO, then you can go directly to HR and ask for an exception (I know you've been down the HR route before.  HR can intervene on your behalf without having to necessarily jump through the appeal hoops.  As you say, it's pay now or pay  more later.... 

3. If At Risk, then find out what the credentials of the insurance company "peer reviewer" was.  You will need to file an appeal.  It should be a board certified oncologist. (not an internal medicine doc with a sub-specialty in oncology).  When my biomarker tests were denied, my employer (ASO) was not happy about the reviewer who was only boarded in Internal Medicine. 

4.  There are two appeals processes, a member appeal (which comes first) and a provider appeal (which the provider executes after the member appeals process has been exhausted. 

5. Ask to file the member appeal, but you are not responsible for gathering medical records. The insurance company is responsible for obtaining the records.  Sounds like the clerk involved here is being really lazy.  If the insurance company is really pushy, then have your doctor write a letter explaining why the PET is medically necessary.  Send a copy of that to HR. 

6. For At Risk contracts, the State Department of Insurance has oversight, when you file an appeal with the insurance company, also file a complaint to the DOI, include any correspondence you've received from the insurance company. 

7. Depending on how much energy you want to put into this, you might want to contact your Congressional Representatives.   (Start with the Federal and then your local ones). 

 

Unfortunately, the squeaky wheel gets the grease.  Sometimes if a member was deemed to be "too noisy" we were told to just pay the claims because of the administrative costs of responding to a barrage of complaints.  Just keep pestering the insurance company for next steps until they've all been exhausted.  If something doesn't make sense ask to speak to a Director or VP (not a low level clerk). 

Keep fighting..... 

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Thanks Michelle. You are a fountain of knowledge. I’ve been wrestling with this in my mind for 2 months and I’m pretty pissed. There’s also an approval company that works for the insurance company to get precertification. What a dang racket they have. 

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