Sillycat1957

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!   

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

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. 

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

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

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?  

Tommy,
Yay you 🤗
Have a great 4th and wonderful summer! Bagels, ha! Your too much!
Take care,
Roseann

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. 

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.
 
 

Hi Tomm. I think I’m just nervous about not knowing for sure if there’s any other problems anywhere else since the last PET a year ago. 

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

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

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

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. 

Hey Lindsay,
Good news on going forward with #4! I Just had #21 on Monday. I'm getting there! Still every 2 weeks, I wouldn't want it any other way, thank you LOL!
I, myself noticed side effects almost right away. By my 2nd treatment I started getting all outta whack. I was getting shortness of breath, severe muscle aches, tingling in both my hands and feet, wicked back pain, headaches, stupid crying all the time. I was just a hot mess! My Oncologist had me skip treatment #3 and most of those issues resolved, so we knew it was from the Durvalumab. She put me on a low dose of Prednisone 5mgs, I wanted to stop treatment all together, because I was pretty scared, but I trusted her so I started the steroid and pretty much have had a few side effects the scared me but were resolved quickly! Now, I still am freakin tired for the first week, recover then back in for my infusion. My tumor has gone down and according to my scans no activity in my lymph node, or anywhere else! So the stuff which I refer to as "nasty *ss crap" is working Yay! So since I'm getting close to the finish line I'm happy, but also nervous as to whats next?
Take care,
Roseann

Barb and Polly,
I just had #21, gained a total of 40 lbs so far went from 118 to 158! I am 5ft 5in I had to get some new clothes to wear! Since I'm 62yrs old I don't see the weight coming off very easily, so I am ordering a few dresses that Michelle recommended from Amazon, they are really sweet! And clothes that will grow with me LOL!
Enjoy your summer!
Take care,
Roseann

Sillycat, you are in the home stretch now. Almost done. A piece of cake.   Happy for you!
Opal

Barb and Polly,
I just had #21, gained a total of 40 lbs so far went from 118 to 158! I am 5ft 5in I had to get some new clothes to wear! Since I'm 62yrs old I don't see the weight coming off very easily, so I am ordering a few dresses that Michelle recommended from Amazon, they are really sweet! And clothes that will grow with me LOL!
Enjoy your summer!
Take care,
Roseann

Barb and Polly,
I just had #21, gained a total of 40 lbs so far went from 118 to 158! I am 5ft 5in I had to get some new clothes to wear! Since I'm 62yrs old I don't see the weight coming off very easily, so I am ordering a few dresses that Michelle recommended from Amazon, they are really sweet! And clothes that will grow with me LOL!
Enjoy your summer!
Take care,
Roseann

Barb and Polly,
I just had #21, gained a total of 40 lbs so far went from 118 to 158! I am 5ft 5in I had to get some new clothes to wear! Since I'm 62yrs old I don't see the weight coming off very easily, so I am ordering a few dresses that Michelle recommended from Amazon, they are really sweet! And clothes that will grow with me LOL!
Enjoy your summer!
Take care,
Roseann

Well, blood work was good, and I will do treatment number 4 tomorrow! Got some good information on the change in protocol to 4 weeks, and it sounds like this might be the way forward with some of the studies. Which would be nice to not have to go in all the time and be such a regime! 
No real side effects yet, when did you all start to notice any?

Prolly-I gained 30 lbs. every one I ever spoke to has gained weight on Durva. The nutritionist at the oncs office confirmed it. It’s only been a month and I refuse to get on a scale so far. 

I am so happy I found this group, thank you all for the support and responses to my concerns. 

I look forward to continuing reading all of your experiences and sharing mine along the way. It’s nice to have the support of those going through or who have gone through the same thing. 
 
treatment number 4 will be in a couple weeks for me. Fingers crossed the blood work is good and we can keep going! 

Lindsay, I'm in the Done Durva Club but I understand the Durvies going to the Medical center I go to are now getting double dose like you since Covid. Have not really heard anything further tho. Good luck. Stay positive. 
Opal

Hi Rosann,
So glad to hear that you’re doing well!  Sorry about the weight gain, we all get that, happy doctors who obviously can’t appreciate our wardrobe crisis!   Aches and pains seem to come with the territory, totally sucks.  You might want to ask about some anti inflammatory supplements such as fish oil-curcumin combo or the bromelian qlucosamine chondroitin cocktail.  
 
This super cute t-shirt dress arrived today- check it out:
https://www.amazon.com/dp/B071H6MTLS/ref=cm_sw_r_em_api_i_L2X0Eb5G4E1WR
Its very flattering & true to size.  Happy shopping! 
Michelle