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CT scan ... up and down.

evolo58
Posts: 293
Joined: Dec 2017

I'm getting a little tired of the down part of this journey. It seems my results are great one month, concerning the next. This is a cut and paste from the other group I frequent ... sorry. A few edits, though. I'm also getting tired of radiologists. It really makes sense to have just one or two looking at patient scans consistantly, rather that the revolving radiologist of the moment take a peek, and have them consult with each other. I have seen so many contradictory, vague and occasionally, misleading CT scan results, and it's getting to the point when I'm not sure I should believe them.

CT scan came back, and I don't know what to make of it.

My CA-125s have been plunging down quite nicely in the first three doses of Doxil, even though it typically increases for many patients during the first dose or two. So when I went for the CT scan, I was hoping that we would be seeing at least about 30%-50% progress.

I guess I should be careful what I wish for. I should have added "all-around".

 The scattered inflamed lymph nodes seem to have gone down measurably, including the ones in my mediastinum, left axilary, and abdomen. (Honestly, I wasn't as worried about the first two since I had a really painful diagnostic mammo around that time, and it wouldn't be out of the question for that area to not be happy with me. However, I was really worried about certain others, including the abdomen.)

However, nodules near the trash can fire .... ground zero ... my lower right quadrant ... seems to have increased slightly in size and number, according to the scan. According to THIS scan. Who knows how the next person will interpret the next scan?

I'm not quite sure what to make of this. Usually, everything looks better or everything looks worse, save a trouble nodule or two. If your CA-125s are plunging down, there usually is a corresponding improvement. And usually, you don't just get extra nodules. And also usually ... you don't have two contradictory results at the same time!

My gyno-onco and medical-onco seem puzzled as well, and told me they intend to give a much closer look at the scan. Radiologists can and do make mistakes and leave discrepancies. One watch-and-wait nodule on my scans has been reported between 1.2 and 1.6 cm, depending on the radiologist. And some radiologists seem more dramatic than others. I've had a certain area of my liver be "likely carcinoma", "likely hemangiomas" and "slightly resembling hemangiomas" in five different scans. The same area! And that is chronological, since November 2017, read by five different radiologists. Do I go by majority rules?

I think I'm about to go on another radiologist rant. I'll try to abstain. I'm using the facility for this current scan the first time, by the way. Not impressed, but that's another rant.

For now, I'm still on the orange devil (Doxil Lipo), and have been scheduled for another session. Apparently, the chemo is working SOMEWHERE. This might be changed. .Oh, and the doctors are going to push harder for the Vitrakvi. Let's hope the insurance doesn't decide to muck that up.

evolo58
Posts: 293
Joined: Dec 2017

The CA-125 today went up 50 points. 

Now, reading all the accounts here, I've read where a stubborn bout with this monster can raise the level far higher, but perhaps the Doxil Hell I'm going through (horrible rashes ... the doctor said it was the worst case of Doxil rash she'd ever seen!) was indeed a genuine allergy.

This definitely enhances my mood.

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

You're an excellent researcher, so I'm sure you've already seen variations of this, but..https://www.ncbi.nlm.nih.gov/pubmed/17300679

There's a lot more out there saying that CA-125 and Doxil aren't necessarily a good match. I hope and pray that's the case for you as well. 

evolo58
Posts: 293
Joined: Dec 2017

Oncos tend to poo-poo the link between distress and cancer. Now, I don't mean stress as in day-to-day stuff. I mean distress ... the flight or flght stuff. According to the NIH as well, there were some studies about distress and cancer issues. Nothing 100% proven, but the two experiments might make one think that extreme stress can hinder cancer recovery. Here is a link. I really do need to remember how to make this clickable ... sorry!

https://www.cancer.gov/about-cancer/coping/feelings/stress-fact-sheet?fbclid=IwAR3_ns96cLP90e_dwJi9zhlFlZK6Fet4Gzz74JD9YVQzjToCVDsMU2398Nw

In the first instance when my CA-125s hit that 770 mark, I was genuinely upset about an upsetting mammo report. The thought of dealing with breast and uterine cancer simultanesouly scared the !@#$ out of me. I also had to deal with the IRS and state income tax bodies on my mother's behalf. Plus ... oh ... the three-month endometrial checkup mark. All within three weeks. I only found out about the false-positive on the breast scan days before the endometrial check-up.

CT scan also showed problems, as I detailed elsewhere, so no ... that wasn't all distress. But it seemed strange when the CA-125 dropped almost 270 points once I got the breast cancer results and sorted the state income tax fiasco, as well as recieved good advice on how to deal with the IRS. (Resolving that took until late December, but I wasn't as worried. This wasn't life-threatening!)

So before the very 1st second-line treatment, my CA-125 dropped that much for no reason at all. I did not have a drop of treatment in that six-week gap. 

The second infusion proved much better. CA-125 dropped another 100 points. My WBCs also dropped quite a bit. I was denied for neulasta. This further makes me wonder if the Bowels from Hell involved some sort of lingering infection.

Third infusion ... CA dropped another 100 points. WBCs went up, just a shade under normal. Yay! Cooking with gas here!

Fourth infusion (today) ... I had another life-concerning moment right before. My mother thought she broke her hip after she fell the week before. I visit daily, usually at night, and help handle her affiars. She didn't say a peep the first four days, and seemed to move OK. She complained of pain mid-week, but said she felt great after a heating pad session. Then on Friday, I walk in to find her in bed in her PJs claiming her hip was broken, she couldn't walk at all, and she could not make it to my car. She need an ambulance ASAP. She decided not to tell me about this during doctor's hours. I walked right into this!

Since she was moving around just fine for almost a week, I thought that strange. I also realized to my horror that it's the peak of flu and cold season here, and here I was with diminished WBC counts ... with an 89-year old lady ... in the middle of a den of Hacking Harries and Coughing Clotildas. Luckily, I always carry masks, but my mother does not like to wear them.

I was terrified to go there. The EMT tried hard to convince my mother not to ride in the ambulance and do a watch and wait until Monday. He was also pretty much convinced she did not break a hip ... at worst, maybe did a small hairline fracture that a hospital would not treat. His partner could fully understand my concern with my case. But she went on and on about her pain, and refused to listen. The EMT also confimed that at this time of year, you really, really don't want to go to an ER unless you're in dire shape because of all the flu cases. For about four hours, I tried my best to find a corner that was as far away from sick people as possible, and that was very, very difficult. I didn't even go to the bathroom. And as you ladies know, that sort of situation in a busy place is very dangerous to an immuno-compromised individual, and there were two of us, including someone who would not want to wear a mask.

While this probably makes me sound like the worst daughter in the world, hey .... I at least did it! I was really, really upset the next couple of days after, though, and wound up with a mild case of ... you guessed it ... The Bowels from Hell ... around Tuesday. It lasted off and on for two days or so. Wednesday was my bone scan, Thursday was my CT scan and Friday was my infusion. Busy week. Whatever the Bowels from Hell are, distress obviously and openly triggers them. It was mostly on my right side this time. And it died down right before this recent CA-125 Test.

This may not be a sound theory because in November, the CT scan showed problems on the right side only, and I had pain on both sides then. So I admit it's not a foolproof theory.

This attempt to correlate might also be pure coincidence, but I know some ladies here believe that a healthy body AND mind is good for cancer recovery. 

Maybe I'm crazy, I could be. But I think I should talk to the doctor on how to better handle distress situations, even if it involves mild meds, until this beast is contained. Stress, I can manage. Distress is rough. And no matter what, I can't see how dealing poorly with distress helps any!

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Oh my gosh evolo58 I just want to give you a big hug...you definitely have had the weeks from Hell. You made me laugh out loud with your description of 'The Bowels from Hell"....I feel your pain!! And no you aren't a bad daughter in fact you are wonderfully patient and a better person than me. And then your description of being in the ER made me laugh also...because we have all been there....murphy's law that the person with the worst cough and cold symptoms decides to sit right by you!!! 

As far as the CA 125 I agree there are so many variables that it's hard to get too excited about that test. And as far as radiologists reading scans...yes I feel it is very subjective and each one reads the scans a wee bit differently. As you said one time it will be 1.2 cm next 1.3cm....so subjective!!! 

My doc wanted to do a CT this last test and I said NO I wanted another PET to compare with the one in Dec. Thankfully the insurance agreed and when we got the results sure enough some of the lesions had enlarged (which doc felt maybe due to inflammation) but the FDG uptake was less which was a good sign.....so if I had had a CT the scan would have shown only the enlargement not an improvement in the FDG uptake. 

Anyway I hope it helped  writing all that stuff down...and you were able to release some of the frustration. That's the beauty of this forum!! Hang in there and again lots of love and hugs to you. xoxo

evolo58
Posts: 293
Joined: Dec 2017

That Hacking Harry or Coughing Clotilda would purposely single me out ... even when I was healthy! And that day, I wondered if I had some sort of target painted on me. EVERY time I moved to a less-crowded area in that ER, Harry or Clotilda just HAD to get near me. Most likely because they were bored, or en route to the bathroom, and since that wasn't a busy area at the moment, it was easier to go that way. I spent three hours mostly standing and paying dodge 'em. 

Well, whatever has happened, at least I didn't catch anything from that wild ride. Still waiting for the doctors to call and HOPING that relaxed news is good news. According to the no-nonsense infusion nurse that day (not rude, but definitely not into much talking!), if the doctor thought the Doxil was a problem, she wouldn't have had me go through with it. I would have been taken off it right away.

In the meantime, I heard encouraging stories from a few people in this situation. Not the exact same cancer, but a similar circumstance. Sometimes, things just don't agree with you, and I guess that means chemo, too.

I look forward to the day of fewer and fewer CT scans. It goes without saying that I think 99% of us loathe them ... and that is probably a low percenage. There are just so many reasons to hate them, other than the obvious.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

dear, evolo.  You know you are in a safe place to rant.  

barnyardgal
Posts: 198
Joined: Oct 2017

I'm sorry. You have a lot on your plate and it's normal to feel the stress. Hopefully, the CA-125 is just a reflection of that and not an accurate market for you. I get the blood test, but it's not an accurate test for me. 

Take care of yourself.

MAbound
Posts: 829
Joined: Jun 2016

How could you ever think you are a worst daughter for helping your mother when you're the one who should be taken care of with what you're dealing with!?!  I'm nominating you for sainthood!!!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1504
Joined: Jun 2015

I agree, MAbound!!!! Evolo58 - I used a low dose of ????? (sorry, can't remember what it was now) to help with anxiety for a while during cancer treatments. It was necessary and most helpful. Please do follow your instincts and ask for something. You are going through so darn much! I hope you find relief soon.

Love and Hugs,

Cindi

Forherself's picture
Forherself
Posts: 161
Joined: Jan 2019

I wonder if that would helo.  Dpoctors don't seem to order it as much now.   Did you get a sed rate with your blood work?  It measures inflammation in the body, andit is not specific, but it would help to see if it goes up and down with your CA-125.   

evolo58
Posts: 293
Joined: Dec 2017

I can ask. Thank you!

EZLiving66's picture
EZLiving66
Posts: 1320
Joined: Oct 2015

OMG, you are having a h*ll of a time! I agree 100% with you questioning doctors' interpretations of the same test or scan. After a while you don't know who to believe or trust. The CA125 has never been a marker for me and now, after seeing the stress you are going through as it goes up or down, I guess it's for the best. (((evolo58))) I am so sorry you are having to go through all this! 

Love,

Eldri

SF73
Posts: 252
Joined: Oct 2017

I am so sorry you are going through this evolo. I really do think that you are a wonderful daughter. The ER visit you described sounds soo stressful. I am so sorry. 

About your treatment.. I don't know why your oncologists are insisting on Doxil. You got the lottery and have the NTRK fusion. Why aren't they getting you Vitrakvi? 

It seems it is expensive. $32K a month 

https://www.forbes.com/sites/matthewherper/2018/11/26/loxo-and-bayers-amazing-drug-has-an-expensive-price/#2d89c32424d0

But Bayer says:

"The company says monthly out-of-pocket costs for the majority of patients will be $20 or less. "Bayer will ensure that no eligible patient with TRK fusion cancer will go without this highly effective therapy," the company said in a statement."

Maybe the team should reach out to Bayer directly. If they are not willing to please you reach out. This sounds soo promising. 

evolo58
Posts: 293
Joined: Dec 2017

That the doctors' assessment has more weight. And yes, my doctors seem to be a lot more determined to push for this. They assigned someone to pursue my case some time back, right after my gyno-onco found out about Vitrakvi, but the drug was not even available to purchase at the time (my gyno-onco found out about my fusion just after the announcement came out!). 

Talking to a friend of mine whose job involves clinical medical trials, Bayer/Loxo might actually also be using new patients as a part of another clinical trial. Just because the FDA approved this does not mean that Bayer/Loxo doesn't need more information. Mine would be one of the early endometrial cases ... there were none in the original group. So that might take time to form as well.

One condition to get this is that the treatment I'm using does not appear to help, and the condition is worsening. My treatment is creating a mixed response, from the report on the CT scan, which I think was pretty much what my medical oncologist and gyno-oncologist got on Friday. Certain lymph nodes and nodules are responding well, but my lower right quadrant ... my "trash can fire" area since July ... is the problem area. I think the docs want to give the films a good look and see just how much the nodules grew, if they did. I thought I read somewhere that sometimes, even the positioning of the body while filming can make nodules look very slightly larger or smaller. I've seen this already in my films. My gyno-onco has already told me that a one mm increase is a cause for minor concern, but that is more of a watch and wait because of interpretation fluctuations.

Also, I saw from previous films and also read elsewhere that if nodules are very, very tiny, some radiologists will include those and some will not. This can be very alarming when three reports from three radiologists mention one nodule and one mentions more than one, but according to the second report, there was no change in size or growth of nodules in that area! (Source: my last CT scan. Yeah. I took THAT really calmly.) So I'm guessing they want to look at possible new nodules as well.

The big question is: Was this treatment effective, and am I growing new problems? I think this is what limited me the last time, since I just started Doxil. In all fairnes to Bayer/Loxo, they would need a more-clearly defined case. And I think the doctors are trying to create just that.

janaes
Posts: 741
Joined: May 2016

That was a problem with me doing my colonoscopy. The assistant at the oncologist office was okay with my issue of the thickening in my bladder (still dont understand exsactly where) but my radiation doctor wanted the colon oscopy.   Yeah who do i believe. It would be nice if the two eould consult together so they were on the same page.

barnyardgal
Posts: 198
Joined: Oct 2017

After my CT scan in July (a month after my last chemo) my gynecologist oncologist said she doesn't like the CT scans because it just doesn't give her enough information. She had me do the PET scan, but I had to wait a few months after the radiation and chemo. She was concerned because the vaginal cuff area had a bump. The bump had decreased from the 2 previous CT scans, and the radiologist just said it was healing from surgery the previous October. The gyn-onc said it should have healed and she was worried about recurrence. Fortunately, the PET showed no activity anywhere and the bump had completely healed by that time. So she doesn't want me to have any CT's, just PETs. I don't know if they can do a PET for you yet, since you're still going thru treatment but you might check.

When I originally heard I was getting adriamyacin (old doxil) I read everything I could, not realizing at first there was a newer doxil, and I wasn't getting that. But I remember some people who got the new doxil had their CA125 numbers go up during treatment and they didn't go down til treatment was complete. With the old doxil I didn't have that issue.

pinky104
Posts: 574
Joined: Feb 2013

My CT scan showed cancer in the iliacus and psoas muscles.  When I saw my PA at my oncologist's office, she only mentioned the psoas muscle and the colon.  I added that I have it in the iliacus muscle, too.  She told me I don't have it there.  She said it was in the psoas and iliopsoas muscles plus the colon.  I have since looked at my PET scan report, which was from another hospital, the one where she works and where I normally go for my appointments.  It definitely said "iliopsas and psoas muscles."  I thought that maybe the iliopsoas muscle might be part of the iliacus muscle, but I asked my chiropractor that question yesterday, and he told me they're two different muscles.  This is another case of two different radiologists interpreting results differently.  I hope wherever it is, it gets killed off by the radiation I finished today or the chemo I'm starting next week.

LisaPizza's picture
LisaPizza
Posts: 207
Joined: Feb 2018

I saw several sites that indicated the the iliopsoas muscle consists of the psoas muscle and the iliacus muscle together (separate in the abdomen area but joined in the hip/thigh area), so it may be that they're both basically right.

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