Symptoms or side effects?

JKendall · January 2005

Hey guys. Jerri started her treatments for the stage 4 with mets to ovaries and one lymph node on December 6th. Treatment is daily radiation and 5FU chemo with a pump (24/7 for Mon thru Fri). For three days during Christmas she was so sick she couldn't get out of bed. The following week, the docs decided to give her a week off of treatment. Last Monday she started back up, but just with the radiation. If she tolerates that well enough, they are considering adding the chemo back within the next few days, and watch her to see how she tolerates it.

Here's what I'm worried about. She's been complaining frequently about being unable to breath "normally." She says it doesn't really hurt, it just feels like she can't take a full, deep breath; and she gets winded pretty quickly, even just taking walks around the neighborhood, or trips to the store. No wheezing though.

Then there is the fatigue. She gets so tired, so easily, and has no energy. Docs say her blood counts are a little low, but not low enough for any meds.

I'm worried, real worried, that this stuff is spreading to her lungs. The CEA marker test is useless because her tumor did not produce any. We are having to rely on scans, and I know they don't show the small stuff.

Can some of you with personal experience help me out with this...symptoms or just side effects?

Thanks. Jimmy

spongebob · January 2005

Jimmy -

Rest easy, my friend... I would suspect that her issue is her hematocrit. Chemo and radiation tend to knock your red blood cell count down. And it is also possible that red blood cells she does have are immature - the body will kick them out even if they aren't fully developed and expect them to carry as much oxygen as a fully developed cell. To put it in Texas terms, they're sending a boy to do a man's job.

the net result of this is that although the red blood cells are going through the proper motions, they just can't carry as much oxygen, hence, she feels out of breath, unable to catch a "full" breath and fatigued all the time. I hate to say it's normal, but ... it is. If she's really worried, certainly she should talk to her onc about it, but it is highly unlikely that something would be in her lungs that is so large as to cause that sort of problem so quickly.

Welcome, Jimmy to the world after cancer... the world where you wonder if any little thing isn't an indication of a reoccurrance. It sucks, but you get used to it. Just don't become complacent. Follow-up when something changes or seems out of place. Better to be safe and find out early if it is something than worry that people will think you're a hypochondriac and figure it out too late that there was really something there.

Maybe a procrit treatment or transfusion would help Jerri feel better.

- SpongeBob

andreae · January 2005

Hi Jimmy,

I will second SB's opinion. I had twenty-thirty tumors in my lungs and never even noticed them. It's only since they have been removed that I feel a little breathless at times, and that's only when I work out in the pool. Tell her doctors and maybe have a scan, but I wouldn't worry too much.

Good luck and be well,
Andrea

Fitlisa · January 2005

andreae said:
Hi Jimmy,

I will second SB's opinion. I had twenty-thirty tumors in my lungs and never even noticed them. It's only since they have been removed that I feel a little breathless at times, and that's only when I work out in the pool. Tell her doctors and maybe have a scan, but I wouldn't worry too much.

Good luck and be well,
Andrea

Hi Jimmy,

I had Stage III Colon cancer with no spread to other organs but lots of lymph nodes involved. I underwent Folfox chemo (5fu/leuk/oxil with the pump also) and I too had the breathing trouble that your wife seems to be experiencing. My onc. thought it might have been due to the decadron, a steroid given as an anti-nausea pre-drug, but I finished my chemo this past Nov. and I still experience it the breathing issue from time to time.

I too felt concerned it had spread to lungs, etc. When I underwent a pet scan it did show something on the lung but subesquent cat scans and chest xrays showed nothing.

I know its hard for us to say, but maybe it really is nothing, just as it seems to be in my case. I was also taking Ativan which is an anti-anxiety and that seemed to help at times so it might be worth a try for your wife.

Speak to the doctor and keep us posted. You and your wife are in my thoughts and prayers.

Lisa
PS My CEA was also useless as it was normal with a huge tumor in my colon. Strange!

JKendall · January 2005

Fitlisa said:
Hi Jimmy,

I had Stage III Colon cancer with no spread to other organs but lots of lymph nodes involved. I underwent Folfox chemo (5fu/leuk/oxil with the pump also) and I too had the breathing trouble that your wife seems to be experiencing. My onc. thought it might have been due to the decadron, a steroid given as an anti-nausea pre-drug, but I finished my chemo this past Nov. and I still experience it the breathing issue from time to time.

I too felt concerned it had spread to lungs, etc. When I underwent a pet scan it did show something on the lung but subesquent cat scans and chest xrays showed nothing.

I know its hard for us to say, but maybe it really is nothing, just as it seems to be in my case. I was also taking Ativan which is an anti-anxiety and that seemed to help at times so it might be worth a try for your wife.

Speak to the doctor and keep us posted. You and your wife are in my thoughts and prayers.

Lisa
PS My CEA was also useless as it was normal with a huge tumor in my colon. Strange!

I knew some of you guys would have sensible answers...THANKS. That makes sense. Andrea, if you had 20-30 of those pesky things and didn't notice it, then we're probably okay. Her last pet scan was just before Thanksgiving, and it was clear. A previous CT scan was also clear. It doesn't seem likely to me that she would have had a significant amount of growth in tumors that were undetectable six weeks ago (I hope, with a gulp!). It's probably like SB suggested--low capacity, immature red blood cells.

Man that was a weird feeling of de ja vu; I swear Jerri's used those words (low capacity and immature) to describe me...

Lisa, what did your doctors do to monitor your progress during your treatments since you didn't have the CEA either?

She's got a rx for ativan and uses on occasion, usually to help her sleep if needed. Sponge Bob, watching the Dallas Cowboys throw games in the last 60 seconds of the game has the same effect on her--yawn.

Thanks guys. I feel better about it.

Jimmy

spongebob · January 2005

Fitlisa said:
Hi Jimmy,

I had Stage III Colon cancer with no spread to other organs but lots of lymph nodes involved. I underwent Folfox chemo (5fu/leuk/oxil with the pump also) and I too had the breathing trouble that your wife seems to be experiencing. My onc. thought it might have been due to the decadron, a steroid given as an anti-nausea pre-drug, but I finished my chemo this past Nov. and I still experience it the breathing issue from time to time.

I too felt concerned it had spread to lungs, etc. When I underwent a pet scan it did show something on the lung but subesquent cat scans and chest xrays showed nothing.

I know its hard for us to say, but maybe it really is nothing, just as it seems to be in my case. I was also taking Ativan which is an anti-anxiety and that seemed to help at times so it might be worth a try for your wife.

Speak to the doctor and keep us posted. You and your wife are in my thoughts and prayers.

Lisa
PS My CEA was also useless as it was normal with a huge tumor in my colon. Strange!

Lisa -

I'm strange right there with ya... my CEA was normal, too eventhogh I had a couple of big ol' tumors hanging around my guts also.

I wonder if CEA conversion is less common with some types of colon cancer?

Be well - fellow strange one!

- Bob

kangatoo · January 2005

spongebob said:
Lisa -

I'm strange right there with ya... my CEA was normal, too eventhogh I had a couple of big ol' tumors hanging around my guts also.

I wonder if CEA conversion is less common with some types of colon cancer?

Be well - fellow strange one!

- Bob

Hiya Jimmy and Jerri. ditto to all the above. Some pretty wierd things happen on chemo Jimmy. I did 6 months and that was only 5fu/leuc. but it hit me really hard. My onc was really surprised at the side effects..he did not expect things to be so tough. My fatigue lasted a long, long time and even now, as the others here know when they catch me here at 3.00 am, I have a very hard time sleeping. This "poison" they give us certainly effects us all in crazy and sometimes different ways.
A coupla months after I finished chemo(hell--that was back in feb. 04) I had similar problems as Jerri. Shortness of breath, very tired and also chest pains. After much testing for more cancer they sent me for heart tests. 5 more tests later the specialist came up with absolutely ZIP. Because my father died of heart failure at 41 they considered me a good candidate as well so thats why they wanted all the heart tests. In the final analysis it was determined that the chemo was the culprit. There was no damage done but the tests were worth confirming that was all it was. My specialists and oncologist both told me that in "some" cases chemo can have an effect on the heart.
Having said that....don't go over-reacting mate...I am just trying to show how many varied effects chemo has on each of us.
Our luv to you both, kanga n Jen

Kanort · January 2005

Hi Jimmy,

It seems as though our residents here have put your fears to rest or at least dissipated them some. Please know I think of Jerri often and think you are a wonderful advocate for her.

Kay

nanuk · January 2005

Gee Sponge, are you sure you wern't a doctor in another life? That was a great dx..
Jimmy: keep a close watch on the hemoglobin-(weakness) and the hematocrit-(% of red blood cells) and ask Dr. if supplements will help
to maintain blood levels.. Nanuk

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