Looking for insight from all of you

UncleBuddy

As many of you know, my brother has had a lot of medical issues that interfered with his getting chemo on several occasions. He also had to have his chemo reduced and some of the chemo meds eliminated because of the side effects. He is now on 5-FU and irinotecan. They had to cut the dose of 5-FU in half because of the side effects.

He is also on Xarelto as a blood thinner because it's his only option at this point.

He went in for a CT scan yesterday and the doctor's office called to say that the tumor on the liver doesn't show on the scan anymore (it was 3 cm) and there is only one small nodule left on the lung (he had 5 which were in both lungs). I will be going with him on Thursday for his chemo so I can talk to his dr then, instead of his nurse so I can ask her what her plans are now. My question to all of you is this:

Do they usually keep giving someone like this chemo as maintenance or will they stop and do a wait and see? I don't want to get my hopes up, but do you think he should have a PET scan too? Can you give me your insight into what I can expect? What are the chances of it returning and do they stop the chemo or do they keep going? I'd rather be prepared and know the possibilites. I'm glad the chemo seems to be working but I am on high alert, I guess you can say, because I know cancer is a tricky, sneaky disease. Please let me know your thoughts, what you think the next step should be and do you think I should see if they should do another scan. Thanks! I really value your input.

Lin

PS I told all of you my brother is intellectually disabled. When he was in the CT machine he threw up. Now they are afraid he could have aspirated on some of his vomit so we have to watch him closely. Has that ever happened to any of you?

Lovekitties

Hi Lin

I would guess that as long as there is any sign on the scan, even if only one small one, that the doctor would continue treatments at least until a clear scan is gotten. 

You may want to ask if the next can be a combo PET/CT which most feel is the best accuracy.

I know he has been thru alot in this fight.

Wishing him and you the best.

Marie who loves kitties

 

UncleBuddy

Lovekitties said:

Hi Lin

I would guess that as long as there is any sign on the scan, even if only one small one, that the doctor would continue treatments at least until a clear scan is gotten. 

You may want to ask if the next can be a combo PET/CT which most feel is the best accuracy.

I know he has been thru alot in this fight.

Wishing him and you the best.

Marie who loves kitties

 

Thanks Marie

The reason I question the CT scan is because when this was originally found, they only saw a small shadow on the CT scan, so they did a PET scan. The PET scan showed a 3cm tumor. I know the CT doesn't have as high a resolution as the CT scan (or so I've heard). 

Thanks. I'll chat with the doctor on Thursday.

Lin

Lisa2012

I agree with Marie, and not only because she loves kitties!

I was in the same boat and chemo was stopped for three months, then it was decided that I should do a PET/CT.  After that scan, chemo continued.   Ask questions.   A PET/CT does require the patient to be still for a long time...mine was 45 minutes, so maybe your brother might not be up for that?

lisa

UncleBuddy

Lisa2012 said:

I agree with Marie, and not only because she loves kitties!

I was in the same boat and chemo was stopped for three months, then it was decided that I should do a PET/CT.  After that scan, chemo continued.   Ask questions.   A PET/CT does require the patient to be still for a long time...mine was 45 minutes, so maybe your brother might not be up for that?

lisa

Thanks Lisa

He has an appointment for chemo on Thursday. I'm going to ask lots of questions. He's had a PET scan before, so I think he can do it again. We'll have to see what she thinks. I was just wondering what all of you wonderful people thought. I don't take what doctors say as the word. I like to ask everyone here about their experiences so I can help him make a good decision, or at least what we think is best for him. Thanks again, ladies!

Lin

annalexandria

UncleBuddy said:

Thanks Lisa

He has an appointment for chemo on Thursday. I'm going to ask lots of questions. He's had a PET scan before, so I think he can do it again. We'll have to see what she thinks. I was just wondering what all of you wonderful people thought. I don't take what doctors say as the word. I like to ask everyone here about their experiences so I can help him make a good decision, or at least what we think is best for him. Thanks again, ladies!

Lin

If they will do another PET/CT,

personally I would go with that.  Did I...mention this to you on another thread??  I'm suddenly feeling like I did. Even three years out from chemo, I swear my brain is still broken (or at least it's a convenient excuse!).

Oh well.  At the risk of repeating myself, having both scans is ideal because they show different things (actual physical structures vs level of cellular activity).  In my case, basically none of the tumors in my intestines showed up until things were very advanced.  The PET picked up spots that weren't visible on the CT, which did turn out to be cancerous.  So for that area at least, the CT sometimes isn't that useful.

In fact, it might be worth asking them which scans are the best for each specific area.  I think I've read that the MRI, for example, may be better for detecting liver involvement.  You could even ask this question on the CSN boards for those cancers, as some of those folks will probably have good up to date info on scanning.

There is some thinking that continuing chemo when there is no visible cancer is not the best course, in terms of QOL and prognosis, so getting accurate scans seems like a good place to start the decision making process.

Your brother is lucky to have such an involved sister!

UncleBuddy

annalexandria said:

If they will do another PET/CT,

personally I would go with that.  Did I...mention this to you on another thread??  I'm suddenly feeling like I did. Even three years out from chemo, I swear my brain is still broken (or at least it's a convenient excuse!).

Oh well.  At the risk of repeating myself, having both scans is ideal because they show different things (actual physical structures vs level of cellular activity).  In my case, basically none of the tumors in my intestines showed up until things were very advanced.  The PET picked up spots that weren't visible on the CT, which did turn out to be cancerous.  So for that area at least, the CT sometimes isn't that useful.

In fact, it might be worth asking them which scans are the best for each specific area.  I think I've read that the MRI, for example, may be better for detecting liver involvement.  You could even ask this question on the CSN boards for those cancers, as some of those folks will probably have good up to date info on scanning.

There is some thinking that continuing chemo when there is no visible cancer is not the best course, in terms of QOL and prognosis, so getting accurate scans seems like a good place to start the decision making process.

Your brother is lucky to have such an involved sister!

Thanks Annalexandria

My gut is telling me that he needs a PET scan since the CT scan, when he was originally diagnosed, only showed the shadow. I will see his onc on Thursday when he gets his chemo, so I will discuss this with her further. I am still encouraged because if it doesn't show, it probably shrunk? Anyway, I always appreciate your input, as well as everyone else who contributes. I'll let you all know what she says on Thursday. Thanks again.

Lin

annalexandria

UncleBuddy said:

Thanks Annalexandria

My gut is telling me that he needs a PET scan since the CT scan, when he was originally diagnosed, only showed the shadow. I will see his onc on Thursday when he gets his chemo, so I will discuss this with her further. I am still encouraged because if it doesn't show, it probably shrunk? Anyway, I always appreciate your input, as well as everyone else who contributes. I'll let you all know what she says on Thursday. Thanks again.

Lin

Oh yes, def encouraging results!

Even without the PET I think that's safe to say.  And if he does do maintenance chemo, I think it's usually pills, and I've heard the side effects aren't too bad.  So all reasons to be hopeful!

UncleBuddy

annalexandria said:

Oh yes, def encouraging results!

Even without the PET I think that's safe to say.  And if he does do maintenance chemo, I think it's usually pills, and I've heard the side effects aren't too bad.  So all reasons to be hopeful!

Thanks!

carrieh

UncleBuddy said:

Thanks!

Throwing Up

I throw up immediately; like projectile vomit, every time I get a CT Scan with the barium and contrast. Makes me vomit for a week solid.  I aspirated during surgery once and developed ARDS; acute respiratory distress syndrome. That was pretty bad; respirator, dialysis, adult jaundice...but.. if he was awake, he may not have gotten too much in his lungs, but you can develop problems from fluid in the lungs so really watch that.

It's hard to say what the chances of the cancer coming back are...I have HNPCC so my chances are in the 80th percentile. I don't know a lot about colon cancer that isn't hereditary, so don't want to give bad advice. I know it's scary, like your standing on the edge of a cliff waiting for the nudge that pushes you over, but as someone who lives with that possibility daily, my best advice is to be aware, watch it like a hawk, but not to let it run your life. I know that sounds impossible when you're in the darn doctors office or hospital every other day...just take it a day at a time if you can.

Keeping you in my thoughts,

Carrie

UncleBuddy

carrieh said:

Throwing Up

I throw up immediately; like projectile vomit, every time I get a CT Scan with the barium and contrast. Makes me vomit for a week solid.  I aspirated during surgery once and developed ARDS; acute respiratory distress syndrome. That was pretty bad; respirator, dialysis, adult jaundice...but.. if he was awake, he may not have gotten too much in his lungs, but you can develop problems from fluid in the lungs so really watch that.

It's hard to say what the chances of the cancer coming back are...I have HNPCC so my chances are in the 80th percentile. I don't know a lot about colon cancer that isn't hereditary, so don't want to give bad advice. I know it's scary, like your standing on the edge of a cliff waiting for the nudge that pushes you over, but as someone who lives with that possibility daily, my best advice is to be aware, watch it like a hawk, but not to let it run your life. I know that sounds impossible when you're in the darn doctors office or hospital every other day...just take it a day at a time if you can.

Keeping you in my thoughts,

Carrie

Thanks Carrie!

We head to his cardiologist tomorrow and his oncologist for chemo on Thursday. I am going to have a chat with his oncologist to see about getting a PET scan. She may want to wait until he's done with this round of chemo. 

ah, I wonder if it's from the barium or contrast that makes you guys nauseous. This is the first time this ever happened. So far he seems fine. I have a nurse coming in twice a week to check on him and the nurse said his lungs are good. His bp keeps getting low, so I have to have a chat tomorrow with his cardiologist.

Thanks for all the info.

Lin