Scanziety - a little higher this time

[Deb W]

Hi everyone,

I mentioned before that I was taken off of Keytruda due to toxicity that caused colitis.  I realize I've been so fortunate to have  had clear scans August, October and December.  What's different about my upcoming scan on Tuesday is that I haven't had a Keytruda treatment since December.  I realize that Keytruda works long after the last treatment, but I've gotta say there's some extra scanziety since this is the first scan since I've been off Keytruda.  The original plan was to keep me on maintenance  for 2 years, but I was only able to tolerate it for  8 months.  I'm telling you that the colitis came out 7 1/2 months after I started treatment.  My oncologist told me that side effects can happen even after being off it for a year.  That's not to say that I won't be put back on it once the colitis goes away.  Anyway, any good vibes, thoughts or prayers sent my way would be greatly appreciated.  Thanks.

Deb

[GaryG]

Hi Deb: This will be quite interesting and a first. I think your oncologist as well as everybody on Keytruda will learn a lot from your scans.   I have been on Keytruda for 10 months now but noticed more side effects like being tired and sleepy for weeks, not to mention swollen ankles, head aches  and loss of appetite, non of which is serious enough to make me stop treatment. Needless to say your scan is of great interest to me so I am anxiously waiting.

Meanwhile, good vibes, happy thoughts and plenty of prayers are heading your way and I hope your scans are clean this time and forever.  Please make sure to post the results as well as  the oncologist  findings. All the best always.

[Rower Michelle]

Prayers for you Deb.... you've got a good scientist doctor on your team.... go with how you feel... and take the drugs.... no need to try and tough it out.   

[LexieCat]

Sending good vibes your way! Keep us posted.

[BridgetO]

Good vibes and calm thoughts coming your way!

[Babs]

Hi Deb,

Ill be thinking of you on Tuesday!  Chin up and think good and positive thoughts.  There’s a lot of people sending prayers your way.  Keep us posted.

Babs

[Deb W]

Thanks everyone.  So thankful for this group.  I'll keep you posted.

[Tom Galli]

Stay the course Deb!

Tom

[Saturn_Bound]

Deb, thinking of you and praying for a clear scan 💕

[LouT]

Deb,

Fingers and toes crossed for you and flooding prayers for a clear scan.

Lou

[TJM]

Truly wishing for a good result. Like many new treatments Kytruda is a new drug. They are still learning. I hope you contribute to it.

Peace

Tom

[LUNGevityKristin]

Thinking of you and sending good scan vibes your way!  

[Deb W]

Hi everyone,

Well, it's not the news I was hoping for.  I don't have the written report - it will probably be released in the portal in 3 days.  My oncologist called and said that  my scan showed that there  are 3 areas in the left lung showing  small changes; he is concerned that it is cancer...concerned enough that he is recommending that I start Tepotinib (the new drug for MET exon-skipping).   The drug takes about 3 weeks to get and he said there's a lot of paperwork.   I decided I am going for a blood test to see if it shows  that I have cancer again,  but he said that there's only a 50% chance it will show on the test.  Still, I don't want to take Tepotinib until I know for sure.  I will have a scan in 4 weeks to see if there are any changes.  I'm still in disbelief - I blamed every symptom I had on Keytruda and Colitis.  Partly because when I discussed my concern that  cancer may have returned I was told "No" it's the colitis that was making me feel so run down.  I just had a scan on 12/28 and I was told it was clear.  I thought adenocarcinoma was slow growing...maybe it's a different kind.  Thanks for all your kind words and prayers.  I'm not sure how I'll proceed.

Is anyone taking Tepotinib that would be willing to share their experiences?

Deb

[Jennedy]

Deb,

I am so sorry to hear this. I also have adenocarcinoma. I had a scan late October that showed things had slight improvement. My one in early February showed progression. 

Tagrisso was first line. Second line is Carboplatin,Alimta and Keytruda.

I'm sure there are others on here with experience with Tepotinib.

Jenny

[Tom Galli]

Deb,

Wow, I didn’t expect that result!

My reading about blood biopsies suggests they are not very accurate. I’ll start reading up on Tepotinib. I’m glad your doc has a plan.  We’ll know more with the full report. 

Stay the course. 

Tom

[GaryG]

Hi Deb: Needless to say I am very disappointed. My question though is  are there any plans for a biopsy? I  know there are a lot of efforts lately to produce an accurate  liquid blood biopsy for cancer but I lost track of that progress. It is very disappointing not being able to know with certainty if it is cancer or not. In any event, I hope and pray that you have the strength and will to succeed again. Tepotinib  looks very promising both for the response rate and the duration. Please make sure to post any news whenever you can and I wish you the best.

[LexieCat]

Hi, Deb,

I'm disappointed with you. Yeah, I don't know that I would put too much stock in a liquid biopsy to determine whether cancer had returned/progressed. I'm certainly no expert but my impression is that it's of more help in identifying biomarkers than in determining growth/progression. 

I don't think "small changes" in a 2-month scan interval qualifies as "fast growing." Either way, though, I think you want to get on top of it ASAP. If you're to have another scan in four weeks, and it takes 3 weeks to get the drug, seems like it makes sense for the doc to order it now. If it IS a progression then that should be clearer on the next scan and you'd have the drug all teed up and ready to go. 

Given what the radiologist said about my last scan (my doctor didn't think it was necessarily progression), I'm nervous about my next scan, too. Sending a hug--remember, these new drugs can be a real gift. Just because you had issues with Keytruda doesn't mean you would with this new drug.

[Steff]

Deb - Please don't let your doctors assume that the changes in your lungs are cancer.  As they told you, Immunotherapy can continue to cause side effects well after the last dose.  The fact that you had inflammation from immunotherapy (colitis issues) can also mean you can have inflammation in your lung.  My mom had inflammation in her lung, near the site of her original cancer, about 6 months (if I recall correctly) into Keytruda.  Everyone was worried that it was cancer.  Her pulmonologist did a biopsy from several areas.  All came back negative, but that didn't give us a definite answer since the biopsies could only prove that the areas that he biopsied were not cancerous - she had a pretty big area of inflammation and the entire area could not be biopsied.  So we decided to wait and see what happened (keep in mind, she was still taking Keytruda at the time). The inflammation didn't have any change for many months, but eventually decreased a bit.  The area is just now looking "normal" 2 years after stopping Keytruda.  

Since you have a few "spots", are your docs interested in doing a biopsy?  This might be better than a blood test??  

I'm sorry for the unexpected scan results...thinking of you.

Take Care, 

Steff

[Deb W]

Thanks for all of your comments.  It means the world to me to have all of you on this site.  I've learned so much.   The plan has changed and I will not have the blood test.  My oncologist ordered a PET scan and it's set for next Tuesday.  

I just want to add that I was going over the radiologist's report and even my history was incomplete.   It only mentioned Stage 1b in 2019 and now experiencing colitis from Keytruda....no mention of Stage IV diagnosis in 2020.  This made me look further into the report and then I noticed that the comparison was not done to my scan in 12/20 or even 10/20, but it was being compared to my scan in 8/20 (which I was told was clear).  I wrote to the oncologist and asked why the comparison was being made to August  instead of Decementer.  The nurse wrote back and thanked (?) me for pointing out the error.  She contacted the read room and the radiologist said he'd do an addendum over the weekend.  WHAT?  I wrote back and said I'd like it tomorrow.  Nothing yet from my oncologist.  This kind of stuff worries me and it feels like they're not paying attention to detail.  Why do I have to find the error?  Shouldn't the oncologist have seen this right away?  Am I expecting too much here?

Steff, that makes sense about the inflammation.  I am still taking steroids for the colitis because of the inflammation caused by the Keytruda and that's why I can't be be put back on it.  So it does make sense that there would be inflammation in other areas.  If the PET lights up on Tuesday, I will need to make a decision on how to move forward. 

Once the report has been reread and updated, I will post.  I'm just not confident that what I'm reading is accurate. Another thing, if there was a consultation on this case and no one saw that...it's worrisome.

Thanks again for all your input.  

Deb

[Deb W]

Steff - I will ask, but I think one is in the mediastinal area and I don't think they can biopsy that area (but I'm not sure - I don't know enough at this point.  I'll know more when they rewrite that report.

[Susan Cornett]

Deb - 

I would be upset about that error, too. I realize that humans make mistakes but this seems to me that a second set of eyes - other than yours - should review each report. My company has a strict peer review protocol and it's a good practice. I am hoping you get that amended report tomorrow so you can wrap your head around next steps.

Sending good vibes - 

[LexieCat]

I've had a few experiences with radiologist errors. In one case, an X-ray of my broken clavicle (which was evident even to me) was described as "no evidence of fracture".  I reached out to radiologist who read the X-ray, who was still insisting she couldn't see evidence of a fracture.

Ultimately, the oncologist is the one who has to do the definitive comparison, I think. 

Oh, and I THINK the mediastinal lymph nodes can be biopsied via bronchoscopy--some of them, anyway. That's how mine were biopsied.

[Rower Michelle]

Hi Deb,

I am so so sorry to have not replied sooner. I understand how distressing the situation is.  The shock is like being kicked in the gut, twice.    Know that your Lungevity Family here will support you through all of this

The chart error is unacceptable, you’ve had a tough time with those medical teams up there.  Maybe it’s time for a second opinion at one of the centers of excellence, like University of Colorado (mutant experts) or one of the big guns.  
 

I would also report the error to the Office of the Patient Advocate and the CEO of the health system.  My Mom always said start at the top if you want to have anything addressed quickly, and sure enough it’s worked for me as well.  

[Tom Galli]

Deb,

The error is regrettable but your action in a detailed review of the report is commendable. For the record and future readers, here is a summary of my best practices involving screening scans:

1. Always get your scans at the same clinic or medical institution. Radiology practices tend to partner up with clinics and institutions so there is a good chance people who've seen your previous scans will be involved in the review.
2. Always get a paper copy of every scan report (I keep every test report including bloodwork). Read it, understand it, and keep it. Dr. Google is helpful here because you can look up confounding verbiage.
3. Keep track of your reported nodules. I use a simple spreadsheet to record the reported location, size and date of identified nodules. This spreadsheet saves me hours of scanziety when a scan report cites a nodule. You might find it easier to download an image of the lungs, print it, and annotate it with nodule locations and dates to track reports.
4. Get to know your CT technician. If you get your scans at the same location, your clinic's technician will have digital files readily available and may answer email messages about location questions. Initially, my email requests went to my medical oncologist who forwarded them to the CT tech. Now they go direct. While techs are reluctant to offer "opinions" on a current report, they have no problem pointing out "finds" on previous reports.

Those that ask TPQs (terribly perceptive questions) about treatments, outcomes or diagnostics tend to sail a smoother survival course.

Stay the course.

Tom

[GaryG]

Hi Deb: First of all congratulations on finding the error.  For those who rely faithfully on their medical team I will say get educated. Sometimes, they forget it is a matter of life and death and ignore the anxiety part of it.

I changed my appointment with my oncologist to the day after I receive the radiologist report. I compare the report to the one from the previous scan and write down any questions. In the cancer center where I receive treatment , reports are always compared to previous ones. Maybe you should demand your medical team to do the same.