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Durvalumab


Robert Macaulay

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  • 2 weeks later...

To all who have completed Durva-did you have a PET scan after?  Supposed to get one tomorrow and of course the insurance company is denying it saying I was already diagnosed with LC.  I read them the riot act on the phone and now docs office is getting involved. Other than a PET, I don’t see how they can see if the treatment worked, if there is no metastasis since the last PET a year ago, if there is scar tissue and it is dead. I’m so sick of people who are not doctors telling me what I need or don’t need and I told them that. 

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Hi Barb,

Insurance companies stink! I'm on Medicare, so maybe there's a difference, I was diagnosed in March of 2019 started treatment in May. I had 2 PET scans in 2019 both were covered 100% also MRIs and I think, 4 CT scans, I also qualify for extra help because I'm low income. With that being said, I worked in the insurance authorization department awhile ago, I would tell people to just keep calling back until they get a rep who knows what to do to get an approval. Hopefully your Oncologist can get an approval for you using a diagnosis code like a suspicious symptoms that require further testing, such as a PET scan 🤗 I'm praying for you, hopefully this gets sorted out quickly. There's nothing like not knowing if the torture we've gone through has been worth it right? Stay strong 💪 there my fellow Durva friend 💜

Take care, Roseann

PS bagged #22 YAY

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Roseann-you are almost there. I’m still waiting for phone calls from the docs office-I blew up their phone before because they also dropped the ball on this one-didn’t communicate so the peer to peer didn’t really happen like I was told They cancelled my PET for tomorrow and changed to a CT next week. Hopefully whoever screwed up can fix it and get the PET rescheduled. I have spoken to the insurance company twice, the onc office 3 times, had a conference call with the insurance and the stupid company that precertifies for them, and my insurance company caseworker 4 times who is also leaving msgs to everyone. Hopefully this squeaky wheel will get some grease. 

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Hi Barb..

I have never gotten a Pet scan and when my last Durva. treatment was cancelled because of Covid in March so was my CT to see if  I was still NED. Today I finally got a CT and a port flush. My thinking was (is) if no one says I have cancer then I don't.

Roseann ..Good to hear your almost in the Done with Durva club 

Summer is here, so I'm moving all of my bad habits outside.

 

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Hi Barb

Yeah, I really think we know where you’re coming from, seeing is believing in this group.  Sounds like you’re doing all the right things.  If you have to go to the mattresses, call your State AG or Senator.   That’s a headache the insurance company doesn’t want especially about a vendor.   Keep making noise! 
 

Michelle

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I got a surprise phone call today from my onc nurse today. The results from yesterdays CT is NED. I was NED during my year of Durva. It managed to keep my cancer away ... good news for all patients. 

 What do you call seagulls that live near the bay?

Bagels.

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Great news Barb. Sitting in chair for # 10 today. Lesion shrunk +\- 50% ,mediastinal nodes reported smaller , mild radiation scarring . Physically doing reasonably well. Looking forward to daughters wedding next month. Bonus as at diagnosis October 2019 that was not a “given”. 
 

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That’s awesome Barb! I just had my first CT through treatment on Tuesday, and will get my results next week! 
 

Grahame, nice to hear you’re seeing results too! I’m doing my treatments every 4 weeks, I go for number 5 next week, which I guess technically would be #10 given I have a double dose. Good luck to you!   

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Grahame-yay!  I’m sure you will be smiling from ear to ear for your daughter’s wedding!  Congratulations and keep fighting 

 

Lindsay-good luck on the scan. Let us know!  

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Barb     Great news! When I got my news last week I treated myself to a piece of chocolate cheese cake... give your self a treat for the year you invested in Durva.

Grahame  ..  enjoy the wedding and the cake that goes with it . That's really fast good news on you progress.

Lindsay ...Hope you get great CT result .. #10 already ..your on your way

thanks everyone for the good wishes ..I hope you all enjoy the season

Q:  What do you get when you combine an elephant with a fish?

A: Swimming trunks!

Q:  Why don’t oysters share their pearls?

A: Because they’re shellfish!

 

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My short lived victory-just received the printed report from the CT last week. Doc was asking me about my rib issue that showed healing on previous report and mentioned again on this one. Have come to the conclusion that I probably broke it coughing when I had pleurisy. That was the 2nd rib. Now it states I have developed sclerosis of the third rib and could represent sequela prior trauma and attention on follow up exam is recommended. So of course I look up all this and find it could be a metastasis?  I can’t wait until November and emailed the radiation oncologist to look at it. Of course I will call the oncologist tomorrow but she really wasn’t too concerned. anybody ever see this wording on a report?  

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Hi Barb,

I hope this didn’t interrupt your weekend.  I stopped looking things up from the CT report about 6-8 months ago.  I go by the rule if the onc isn’t worried than I won’t worry.  Easier said than done.  For about a year the onc disagreed with the radiologist over a need for radiation, onc was right.  He had more experience with my “rare” cancer.   
I had cancer on my spine and similar words appear in my CT scan which doc attributes to a combination of genetics and age.  Here’s to growing old. 
Keep us posted! 
Michelle

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Hi Michelle!  Hope you’re doing well. I just got off the phone with the radiation oncologist. He said it could very well be radiation damage as that is the rib area it was aimed through. Says it reads like it’s old stuff and he looked at the pics and doesn’t see any concerns as far as tumor. I have a call into the onc just to clarify our conversation Thursday when I thought she was talking about the original broken rib. It didn’t ruin my weekend, it just upset me that I didn’t understand what the oncologist was referring to. Also that if the insurance would have approved a PET I probably would have had a more detailed report. Just waiting for the onc to call back. 
how are you feeling? Doing? 

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Hey Barb,

Well that is good news.  It’s never a real victory lap for us as there always seems to be something. 
Generally, I’m doing fine.  Scans are scheduled for August 5th, until then it’s business as usual.  I’m recovering from an overuse knee injury (thank you COVID Stay at Home Order), age and inhibitors don’t mix.    My last set of labs turned up a little bit of anemia.  Not sure if it’s a long term side effect of the targeted therapy or the massive Advil to treat the knee???  Hoping it resolves with the iron supplements (another pill!!). 
 

Today the dreaded disability insurance paperwork arrived.  I knew it would be coming as I’m coming up on two years this September.  There’s a medical records request and functional assessment due in 60 days.  I despise insurance companies.  I would expect having a Stage IV diagnosis should be hassle free but who knows.  
 

I’m really grateful that I’m doing very well.  Can’t wait to get through this pandemic and back to leisure travel! 
Michelle

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Michelle-sound like you are doing well. Paperwork stinks on every level and is ridiculous. Don’t even get me started about insurance. Speaking of trips, I was supposed to go to NJ next month for Music Fest in PA -of course that’s cancelled. Still might go somewhere within driving distance but gotta wait and see. 

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Just had #23 today, getting there! TSH levels are climbing, Onc going to do a more in depth work up, Ugh! Always something huh 😃

Michelle,

SSDI is a long drawn out process, good news is it's retroactive, I really don't understand the hold up Stage 4 should be automatic. My original diagnosis of Epilepy is on the list of automatic qualifications, but it still took me 3 yrs to get approved! But I still had to get an attorney, then I had to agree to only 1-1/2 yr of retro pay go figure on that one too. He of course got his 1/3. My approval was very quick when he got involved! Also before my cancer diagnosis, when we are on SSDI we are able to work and make up to $1,280. p/mo I went over a few months by approx $50. and $80, and a few small amounts, due to my commissions, I had to pay back my full months benefits! Just a heads up if you decide to get a PT job out of sheer boredom. Needless to say, after my cancer diagnosis, I was reinstated to my full benefit rate. Cancer is also an automatic qualification, I think these people reviewing SSDI claims are clueless, sometimes I think they feel like they are doing the government some sort of services by denying claims when actually, it is money we and our employers have paid into the system burns my butt!  

Barb,

Like Michelle said, I too, only listen to my Oncologist when it comes to my cancer, she says I'm ok, so I must be right? 

Everyone enjoy your week, New England is being a little touchy right now, doesn't know if it wants to be sunny, rainy or what 😃

Take care,

Roseann

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Roseann-Yay you’re almost there!!  I sort of have this problem of reading my scan reports. Usually I get them before I see the doc, not this time so I went in blind and uninformed and unprepared . I should stop reading them because More than once what I googled really wasn’t the complete picture. I’m sure everyone is just as tired as I dealing with this. I wish I could just turn off the lc thoughts for a year!!!   Hope all is well for everyone here. Have a good week!

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