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Scanziety.


Deb W

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Hi friends,

It's that time again...CT of chest and abdomen on Monday - seeing the oncologist for appointment on Tuesday.  Feeling a little more anxious than usual as this will be the first scan with only Keytruda for the past 6 weeks. I'm hoping there are no surprises.  I've been in remission since August (really hasn't been that long), and feel optimistic, but every once in a while the thought of another recurrence comes to mind...ugh!  My oncologist said that he's looking for anything new that might pop up.  If this scan result is good, I believe my 🙏appointments will be every 6 weeks instead of 3 and the scans will be every 12 weeks instead of 9.  I've been having a lot of gastro issues with Keytruda that started about a week ago.  I've been on it for 8 months so I'm not sure why I'm having them now.  I'll ask about it  on Tuesday.  So, any good vibes you send will be appreciated.🙏

Deb

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Hi Deb: I send you all the good vibes and wishes for a clean scan I am able to muster. I will be  waiting for Tuesday so please do not hesitate to post. Meanwhile even though it is normal to be nervous, there is nothing to gain from anxiety. I know it is easier said than done because I do the same thing. Could your gastro issues be due to anxiety? I wish you the best.

 

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Hi Deb,

These are great milestones as you’re heading into maintenance therapy!  Will Keep you in our prayers as you head into Tuesday.  
I remember “graduating” to the 12 week appointments and thinking, now what?  Generally it’s good news as the oncologist is already signaling based on the research and how you are feeling that the therapy is working.  
 

As for the gastro issues; for some reason side effects emerge with long term use.  My Mom and friends are on Keytruda.  They all have gastroenterologists as part of their care team to manage what is either constipation or diarrhea/general upset stomach feelings.  They had to shop around to find a doc who understood immunotherapy. The older docs don’t know so look for one of those who aren’t too far out of their fellowship programs (even though they look like they are 12 years old). 
Keep us posted!

Michelle

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Thanks for your thoughts and prayers.  I am happy and thankful  to be part of this group.  It really eases the isolation I sometimes feel with this disease. 

Michelle, that makes perfect sense about side effects after long term use.  I will ask on Tuesday.  I'm reading a lot about steroids - I'd rather try adjusting my diet first and see if that helps.  My oncologist is quick to refer me out if I say anything other than...I'm feeing fine.  

Deb

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Deb,

I'll be praying for you and keeping all relevant appendages crossed.  Relax and try your best to focus on other things.  Of course that's easy for me (a born "catastrophizer") to say, but I know it is the way to get through these things.  I look forward to hearing the good news on Tuesday.

Lou

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Hi Deb,

I hope your scan was uneventful today and your doctor appointment is even more uneventful tomorrow.  I wanted to chime in about your GI concerns.  My mom's severe colitis did not come on until 2 months after she was on a break from Keytruda.  The issues were severe enough that it landed her in the hospital.  Since she had been NED for about 1 year prior to her break, the severe colitis was the deciding factor to stop Keytruda permanently.  If there was a big concern for recurrence at that time, they would have paused Keytruda and administered steroids.  She would then start back up Keytruda to see if the colitis reappeared.  I cannot remember if you were one who was receiving a larger dose less often, but there is something to be said about increased side effects and larger doses. 

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Hi Steff, Thanks for that info, it's very helpful.  I asked earlier if anyone had tried the 6-week dose.  It seemed to me that the side effects would be worse. After this latest experience, I won't try it.  I don't think they know enough about it yet. Interesting story about your Mom.   I've been clear for about 4 months now.

Good news today!  My oncologist said everything looks clear....but the official written radiologist's report was not in the system yet, but as far as he could see viewing the scan  it looked clear like the last one, but we're waiting for the official report - I usually have it the next day, but I think people are trying to get these tests in by the end of the year probably because they've met their deductibles.

I did not have an infusion today because my immune system is on over drive from the steroids.  He is postponing the Keytruda for 3 more weeks - until after I finish the steroids.  If the GI issues happen again he will stop the Keytruda, and I will go for scans every 2 months.   Also, he said that the fact that I'm getting the side effect usually means the drug is working. He also said not to worry if I need to stop Keytruda because studies have shown that if new growth starts or the tumor reappears starting up on Keytruda is still very effective.  He said that while it is rare to have a side effect 7 months after starting the drug, and that usually people will have the reaction within the first 4 weeks, everyone is different.  He also said that there can be long term  side effects even after the drug is stopped

Deb

 

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Deb : Good news and hopefully the radiologist report conforms it.  Now if we get the darn tennis ball to go where it is supposed to, we will have it made. Congrats!  We are gaining a lot of experience thanks to your interaction with the oncologist. Happy new year.

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He's a pretty smart guy and I trust him.  Sometimes it seems like he's not prepared for the office visit and that has been concerning to me, but when he opened the scan today it was like he had memorized my lungs without looking back at previous scans (unless he took a peak back prior to my appointment which is unlike him)... this is the same that's the same, there's nothing here, we've seen this before and it's nothing, and then to prove there was nothing new, he went back in time to  compare scans.

I've been trying to take a trip to Florida for what seems like forever. Naples, Sanibel Island and Marco Island are my favorites.   I can't play tennis now because it's cold and snowy, and I wouldn't think of playing indoors at this point.  As soon as it's safe to travel I'll be on a plane to Florida for sure. I'll need to brush up on my skills because better placement is needed,  I can't be running all over the court anymore.  The better the player the less running I think.   I am looking out the window now and the snow is coming down pretty hard.  I love the first snow and snowstorms (as long as I don't have to drive) so I took my dog for a walk and he loved it!  We are in a townhome now so no worries about shoveling!

I know some people don't like this term, but I think we really are warriors!  Happy New Year to all.

Deb
 

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