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Tomm, you are just too much lol! glad your still NED and getting back to a normal pace once again 😃

Lindsay, my post Durva life is coming along, as I wait for my scans in November I'm starting to get a little squirrely here though, the scanxiety is starting to kick in! 

But, I am returning to my job part time next week Yay! so that will keep me occupied (Covid be damned) it will be a safe place to work, and I will be amongst friends and I just can't wait!

Question? Anyone else have a bone scan after they completed Durva treatment? I've never had one, I read up on them and I'm just curious, I do have arthritis, and I read an article that stated that ICIs' can cause it to become problematic and cause some cancer progression. I did not like that, at all. This is a short excert of the article from MedPage Today dated Oct 9th, 2020 I can't fit the whole article, and there is no link to share it, so should I be worried?

Thanks and Take care 

Roseann

***Cancer patients treated with immune checkpoint inhibitors (ICI) who develop severe arthritis may be at risk for progression of the malignancy, a single-center study suggested.

Almost 90% of patients treated with ICI develop immune-related adverse events, which can include pulmonary, gastrointestinal, dermatologic, and rheumatic events. Arthritis has been reported in almost 4%, with the most common presentation being a rheumatoid arthritis (RA)-like phenotype characterized by small-joint involvement.

In a cohort of 42 patients with ICI arthritis whose baseline Clinical Disease Activity Index (CDAI) was 15 and who were followed for a median of 7.4 months, the median time to arthritis onset was 2.8 months, according to Karmela Kim Chan, MD, of the Hospital for Special Surgery in New York City, and colleagues.

In a multivariable analysis that adjusted for time to onset of arthritis after initiation of ICI therapy and for the use of disease-modifying antirheumatic drugs (DMARDs), each one-point increase in baseline CDAI was associated with a 9% increase in the likelihood of cancer progression (HR 1.09, 95% CI 1.00-1.19, P=0.05), the researchers reported online in ACR Open Rheumatology.

 

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Hello to The Durva Club- I wanted to pass this information along to you- On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer

Barb   ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track. Sillycat  .. you may find this interesting  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/

All my Durva friends are doing so good! Yay! I may not be taking the durva anymore but I still get to hang out here cause I had some....right? 😁 So I'm only at half way thru this chemo/immuno thi

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Silly cat-I had a bone scan last month which was 4 months after I finished the Durva. They saw nothing new or anything other than 2 prior rib fractures and 2 degenerative disks. I lied to get it because I never had one and with the old age aches and pains I wanted to be sure nothing was brewing. I’m going for a PET on the 4th. Have you had one since you finished?

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Barb,

Never had a bone scan in my life. Last PET scan was Dec of 2019, and MRI was Jan 2020, I was surprised that my Onc was just doing a CT scan and not a PET scan, she said this visit was for re staging my cancer. I'm confused on that front as well, how the heck does the stage of cancer change? Aren't we still... In my case 3A until I progress hopefully I never will. Unless my scans are just NED? IDK I just hope that's the case hoping and praying that Gods' will is that Durva has did it's NED magic 😃

Oh well still a cancer newbie I guess

Take care all, have a nice evening

Roseann

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As a Stage IV patient (now stable and doing well) 5 1/2 years after my diagnosis -- I have ONLY had ONE Pet Scan and that was done back in 2015 at the time of my diagnosis.  ALL my follow-ups scans are CT Scans and and MRI's -  (I started with a brain met).  

I also know several others who are always have CT Scans.  I know many insurers will not cover Pet Scans as routine, since they are so costly.  I've asked many times and have never totally understood WHY some folks have so many routine Pet Scans.  I've always been under the impression CT Scans are totally appropriate for routine and Pet Scans are primarily for staging and/or done when a patient progressed.   

I did have one BONE scan but that was more for degenerative disc disease and significant arthritis in my hips.  Both not related to my Lung Cancer diagnosis.  

Best wishes to all with your scans -- Personally, I prefer CT Scans (quick and easy and no special prep).   IF and when I may some day have any sign of progression, then I would ask for a Pet.   

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Ok so I’m freaking out. I fought for a PET scan and won, now it’s scanxiety for tomorrow and almost sorry for the win. This is 6 months after treatment was completed and I’m not ready for a bad result. The what if game is playing in my head. 

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Barb,

No, no, no, but yes I do understand the scanxiety you are feeling! Wholeheartedly, we want them so badly, yet, then, we are terrified of the what ifs. With that being said, we are better off with the knowledge of knowing exactly what those what ifs actually are, if anything. Could be a wonderful outcome like NED! Or if it isn't, well then, we can get our team of Docs on the ball right quick and get a plan in motion I say 😃

I had my bone scan on Monday, I go for my CT scan on Thursday. Ugh! I don't see my Oncologist until Nov 24th! But I get copies of my scans emailed to me, so I will be sure to be asking for an interpretation from my fellow Brainiacs lol!

I will be thinking of you tomorrow Barb, I will say a prayer that your scan will be a clean NED one

Take care 🙏

Roseann

 

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Barb, still hoping for them great results, saying prayers and sending positive vibes your way!

On another note, both of my results are in. My Bone scan came back and everything looks good on that Yay!

My CT Scan was confusing, my tumor George stayed the same, 8mm, ok so he just wants to hang around been that size since last Pet scan in Nov of 2019. It also showed 2 nodules that were 2mm on my left lung that were there on previous scans but were not mentioned, WTF! Also I have a nodule on my Thyroid, from my previous scan, that should be followed up with an ultrasound, again WTF!  I read through all my previous PET and CT scans and it doesn't mention anythin about nodules in my left lung anywhere, is this kept like a secret in invisible ink until it reaches a certain size? As for my thyroid, I have had multiple small cysts there in the past that have come and gone, but still, if they have been there shouldn't they have been on my report? Also, I should mention, my reports have been read and dictated by the same radiologist. 

So, did Durvalumab work for me? I'm not feeling very confident that it did right now. On the one hand it shrank my original tumor from 1.7cm to 8mm, but also chemo and radiation was still doing some heavy duty work in my body as well. Hmmm. I am going to do some heavy retail therapy today! I guess I will wait to see what my Oncologist says on the 24th, she is the expert, and I hope she can explain my year of torture LOL!

Take care,

Namaste, Roseann

 

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Hey Roseann. I’ve had nodules mentioned on a scan, not on the next and back on the 3rd. Not sure how they pick and choose what’s mentioned. I think they should mention every little thing. Thanks for the vibes. Still waiting....

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Lots of us have the "appearing and disappearing" mystery nodules. Here's what I learned--because CTs examine many discrete "slices" of your anatomy, very small nodules may show up on one scan but not be visible on another. It's not a secret and it doesn't mean anything alarming is happening--it's just a limitation of testing. I keep all my old scan reports and nodules in the same location sometimes show up and sometimes don't--it can also affect the apparent size (depending on angle, etc.). If nothing dramatic is happening, they just continue to keep an eye on them. 

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Speaking of  CT scan ,it is common to have different pictures when CT scans are taken on 2 different machines. The reason being there is no one standard for calibration of these machines among manufacturers. Not to get too deep in the boring world of photons , beams  and wavelengths, standard calibration insures that  all machines operate  under the same conditions and provide the same result.  Our health care system is great but  most of the time and due to competition, the left hand does not know what the right hand is doing.

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PET SCAN-impression - no hyper metabolic activity in neck , chest, abdomen or pelvis nor skeletal. What does this note mean-The region of pulmonary consolidation upper right lobe minimal SUV of 2.0. This is the location of the original tumor. So I guess it’s not dead? It’s confusing that it says both. It also doesn’t give a measurement 

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That sucker sounds dead to me!  The low SUV is most likely inflammation and scarring from the radiation you had.  Your doc hit it with a motherload of radiation, so there's always some scarring as a result.  I think you can start walking on sunshine!  

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Hi everyone,

I just realized I never hit the submit button on my last post LOL! My shopping trip was very fruitful, fun and very gratifying!

Barb, my last PET scan in November showed an SUV uptake of 2.2 down from 15.6 so I guess we both shoould do a happy dance eh! I am just disappointed that Durvalumab didn't do the work that I thought it would, my tumor is still 8mm after Chemo/Radiation combo. I know that is great but I can't help but be bummed, spending a year of being sick and fatigued and in pain in places and having to take stupid pain pills and whine whine foe what seems like nothing! But then again it did halt any progression right?

Ugh! now I have to wait until the 24th to see my Oncologist, because our state was put bake in the stage 2 zone because of an uptake of Covid outbreaks, my appt was cancelled til then.

Oh well, I'll remain as calm as I can 🙃

Roseann

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Michelle,

I love Lands End, they are next on my list for their beloved turtlenecks. I gained so much weight XS just does not work for me anymore, I think I need a M. I have since learned to order both a M and a L and return the one that doesn't fit. Getting smart in my old age, well retail savvy anyway 🤣

Have a great day

Roseann

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