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CT scan results - what fresh hell is this??

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

I guess I've been in denial about my medical status for a month or so. After 8 sessions of Rituxan, my platelets were up to 160 and I was feeling well. My hematologist had me go in for a followup CT scan "just to see", and I did that last week.

The results are pretty scary. The hematologist knows that I want the actual test results, and don't just want to hear that it's normal or abnormal, so she emailed them to me. I'll see her Monday to discuss it.

In the meantime, the CT scan shows that there is all kinds of stuff going on in my lungs - several pleural effusions and pleural-based nodules. I didn't know what that even meant until I looked it up online - another educational moment that I never wanted! I also have an enlarged spleen (already knew about that), an enlarged and abnormal thyroid (that's new), and more enlarged lymph nodes than I had a few months ago. Ugh. Quoting Dorothy Parker, what fresh hell is this?? Is the lymphoma settling into my lungs and thyroid? If not, what else could be causing this? Of course I'll ask about all of this on Monday, but in the meantime my poor tired little brain is working overtime imagining what the worst case scenario might be.

On top of the ugly CT scan, my platelets as of last week are now back to 118. The hematologist said in her email that I shouldn't be overly concerned about this, and that it could just be a normal lab result variation. I'm not buying it...160 to 118 seems like a pretty substantial drop. I have lab work done weekly, so we'll see what next week shows, but I've heard this all before...seems like some new awful thing happens every time the doctor tells me not to worry.

So, I'm making my list of questions for the Monday meeting. Again. I feel like I've gone through this so many times now: Test results, diagnosis, research, questions, more questions, dubious answers, more tests. And every time I feel a little less resilient, a little more like I'm going down a rabbit hole.

Glad this space is here so that I can tell the truth about how I feel about all of this, instead of having to put a brave face on it when I feel anything but. It really does help.

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi Janine,

Thanks for sharing with us. Try not to let your mind go into
overdrive on this (hard I know). Hopefully you'll get some informative
news on Monday with your hematologist.

It's possible these are side effects of the rituxan.

I know it's scary and share here all you want.
Hang in there and please keep us updated.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Janine,
You sound exactly like me when it comes to reading the scans and researching our brains out on the internet. It is exhausting, but I'm always compelled to find out as much as possible in hopes of putting my mind at ease. Jim is right...you will find out more tomorrow and hopefully things will not be as bad as you think. My prayers are with you and please come back and share what you find out. Try to relax today and keep the faith...I know... "hard to do", but remember...stress is so hard on our immune system and makes it work overtime. Take care and best wishes...Sue (FNHL-2-3a-6/10)

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

It is so hard to process everything,and it is so normal to have feelings of dread.... I have been out of treatment for about two years now and my white counts are still below normal,at 3.0, and my platelets are at 139. I still have a spot showing up on my hip, but my doc saids I'm doing good...... I guess what I'm trying to say is that we will never be totally normal, keep the faith, and stay as positive as you can... Vinny

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I go and get my scan reports the next day and start picking them apart. Try to figure out what they say and start wondering what does this and that mean. When I ask they say it just means this or that and nothing to worry about. It all depends on who is reading that day. They all word it differently. John

miss maggie
Posts: 929
Joined: Mar 2010

Dear Janine

Is ignorance bliss?????? Sometimes I think so. I know when I see my oncologist,
(seeing her in August), I question everything. When I get the results of any
blood tests, I go to my chart I found online, to check if the levels are normal.
Sometimes, the results from the doctor will give you the normal range. Sometimes not.
I can't help myself and will not be ignorant.

Good for you. Be sure to question everything. I do know Rituxan can bring some levels
down.

Just my thoughts. I will keep you in my thoughts. Today is Monday. Let us know what
the doctor tells you.

Love Maggie

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