Jump to content

Yikes, Scanziety!


Babs

Recommended Posts

Update,  I’ve been doing a clinical trial for the last 8 weeks and have my first scan next Tuesday.  I’m pretty anxious about it and need as many positive thoughts, prayers etc. I can get!  I have been tolerating the drug fairly well with the exception of 1 week where they withheld the dose due to some nausea I was having.  Big deal!  They admitted that they overreacted.  I’ll post my results and I hope everybody else is doing well!  
 

Babs

Link to comment
Share on other sites

Hey, Babs--best of luck! I'm getting my second set of post-clinical-trial scans the same day as you. My first scans were fantastic--I hope the trend continues. 

I hope your scans show a good response to your trial, too! I'm actually glad they are cautious with new treatments when it looks like we might be headed for trouble. They are dealing with a lot of unknowns, and nobody wants to injure a patient who might be headed for a problem. Glad your nausea cleared up fast and you were able to get back on course.

Fingers crossed for both of us!

Link to comment
Share on other sites

Hi Lexie,

You are right as far as them being careful with the side effects.  It was just kind of disappointing to not get dosed that 1 week. 

I have my fingers crossed for both of us next week!   Are you still having fatigue?  That’s been one of my side effects that is the most annoying.  
 

Babs

 

Link to comment
Share on other sites

My fatigue is improving all the time now. I do get tired if I'm active, but I'm able to be active more, and longer, than I was. Of course, I'm not having any treatment right now. My fatigue is left over from my hospitalization for three weeks with very intense treatment--it was really brutal. But if this works like it's supposed to (and as the initial scan suggests that it's working), this is a one-and-done--no more treatments. That was one of the reasons I went for this particular trial. No more treatments was pretty appealing!

I hope your fatigue improves with time. I forget what kind of trial you are on--do you have a link?

Link to comment
Share on other sites

Pretty cool--I always say, nobody wants to deal with lung cancer, but the science around the treatments is really interesting! It sounds very promising--will keep my fingers crossed and send good vibes for your scans next week!

Link to comment
Share on other sites

My deepest prayers for both of you! 

I also have a scan, next Friday, and will have to wait it out over the weekend, sigh. I finished my 23rd Keytruda infusion a couple of weeks ago for Stage 4 NSCLC. My oncologist has been doing serial  CA19-9 marker tests since we began therapy, even though my cancer is in the upper lobe of my right lung with metastises  to three lymph nodes in the left chest and axillary area,and nothing in the abdomen. The marker can be used as an adjunct with other than pancreatic cancer sometimes, like my adenocarcinoma. Anyway it has fluctuated, over the past, up and down by three or four points. However, it took a significant leap last test and went from 68 to 77. 

Anyway, we are hoping that the cancer hasn't progressed. But if it has, my Oncologist believes that, if my met amplification is over ten, then I may be a good candidtate for Crizotinib.Other than that, chemo or qa trial would be my next lines.

 

 

Link to comment
Share on other sites

We’ll I had my scans.  CT and bone scan.  Tumor has shrunk by almost 1 cm and no metastasis anywhere!  I’m beyond the moon excited since the last few scans before this trial was always “slightly larger”.  My DR said technically she will call it stable because unless it’s changed by 30% or more it can’t be considered anything else.  I’ll take it.  The plan is to continue on this trial and scan again after 2 more cycles.  
 

Lexie, do you have any results yet from your scan?  I’m thinking about you.  
 

Babs

Link to comment
Share on other sites

34 minutes ago, Babs said:

Lexie, do you have any results yet from your scan?  I’m thinking about you.  

Yeah, kinda disappointing. Glad I didn't read the report first, which opines that it shows disease progression. My doc disagrees--thinks the radiologist was looking at things wrong. Anyway, there is a cloudy area that wasn't there last time, which my doctor thinks may be some kind of pneumonia. He was surprised I haven't had a cough or other pneumonia-like symptoms. 

In combination with the difficulties experienced by the other patient in the trial (whose scans are so cloudy they can't see her lungs), he's wondering whether this is an effect of the treatment--maybe autoimmune. In any event, he gave me a short course of additional antibiotics and scheduled the next scan for a month or so from now.

Link to comment
Share on other sites

Thanks everyone!  

Lexie - I’m sorry you didn’t hear something a bit better!  I would definitely go with the Doc vs. the radiologist.  My Doctor and I talked at great length about pretty much the same thing.  She said very seldom does she agree with the Radiologist and small things like maybe you took a bigger breath this time as opposed to the last scan.  I hope the next scan shows improvement.  I’m rooting for you.  
 

Babs

Link to comment
Share on other sites

Babs--great news!

Lexie--I'm sorry to hear your results were ambguous. Must be really disappointing after all you've gone through on the trial. When is your next scan?  I'll be crossing all fingers and toes for a clearly positive result.

Link to comment
Share on other sites

Great news Babs! It's a sign that the treatment is working. Wishing you all the best and hope that the tumour will keep on shrinking.

Lexie sorry to hear about your ambiguous results. My mum's oncologist told her that reading scans can be very difficult and not to stress too much about it. It's easier said than done I know. My mum was told in Feb that the cancer came back based on a PET scan. They then did a CT scan and there was nothing there so a team of doctors and radiologists had a big meeting and they carried out further tests. They confused the inflammation and scar tissue for cancer.

So scans can be confusing and hard to read. I'm wishing you all the best Lexie. I know that you're strong and determined.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.