Cea continues to rise, pet/ct next and then?? Folfiri and avastin?

jen2012

Since my husband's clear pet/ct on jan 2nd, his cea has been checked every three weeks and has gone from 2.5 to 8 and now 27 yesterday.  So she's trying to get him in for a pet/ct ASAP and most likely starting folfiri and avastin next week.  He hasn't done folfiri yet...hope he has good response like he did on folfox.

I guess we naively keep hoping this will just go away..and it's not

 

LindaK.

So sorry

sorry to hear of the elevation in CEA for your husband.  Has this been a good indicator for him?  It never was for my husband.  Last January while he was in the hospital with a large tumor in his small intestines, his CEA actually went down.  After they removed the tumor, he started FOLFIRI in March.  He had done the 12 rounds of Folfox in 2013.  Since he had problems with extreme constipation on Folfox and after, he did surprisingly well on Folfiri, since the nurses call the part of the cocktail Irinotecan "I ran to the can".  He had a little diarrhea but nothing out of control.  They wanted to add Avastin but he did not want to do it.  They did add Vectibix last summer which gave him the acne type rash.

Try not to worry too much, I know, easier said than done.

Linda

jen2012

LindaK. said:

So sorry

sorry to hear of the elevation in CEA for your husband.  Has this been a good indicator for him?  It never was for my husband.  Last January while he was in the hospital with a large tumor in his small intestines, his CEA actually went down.  After they removed the tumor, he started FOLFIRI in March.  He had done the 12 rounds of Folfox in 2013.  Since he had problems with extreme constipation on Folfox and after, he did surprisingly well on Folfiri, since the nurses call the part of the cocktail Irinotecan "I ran to the can".  He had a little diarrhea but nothing out of control.  They wanted to add Avastin but he did not want to do it.  They did add Vectibix last summer which gave him the acne type rash.

Try not to worry too much, I know, easier said than done.

Linda

Thanks Linda.  Yes cea has

Thanks Linda.  Yes cea has been a very good indicator for him.   he has an ostomy so maybe the diarrhea won't be too big of an issue?  We will see.  pet scan scheduled for next wed.  Unfortunately the only place to get him in for a pet/ct in the next week is the hospital that my mom died in...place I said I would never go back too.  

Thanks for your note ...we are trying to not worry much.  

Trubrit

CT & PET

Last year my CEA started to rise. A CT Scan showed nothing on the liver, so I went for a PET (after a fight with insurance) and sure enough a met lit up. It was a small met, burried deep, so maybe that is why the CT didn't pick it up.  

I had the met blasted, and so far, so good. 

You are well aware of how things work, one never really knows if the CEA is indicating growth or not until you see it on a scan. So keep on thinking the best and planning for the opposite. If it is another tumour, then here's hoping its a tiddler and can be dealt with immedietely. 

You and your husband are in my prayers.

Sue - Trubrit

Fight for my love

my husband is hospitalized

my husband is hospitalized because of kidney infection due to the ureter blockage.Just because of the infection,they did another Ct scan of pelvic and abodem,still nothing showed up.oncologist clearly says they only treat Mets,not elevated cea.surgeon did say it is not a bad idea to do a colonoscopy.so when my husband is well enough,he will do a colonoscopy. elevated cea is really like a big stone on our minds,you know you have a problem,but you can't find what is causing the problem,and you can't take action to fix it.

jen2012

Trubrit said:

CT & PET

Last year my CEA started to rise. A CT Scan showed nothing on the liver, so I went for a PET (after a fight with insurance) and sure enough a met lit up. It was a small met, burried deep, so maybe that is why the CT didn't pick it up.  

I had the met blasted, and so far, so good. 

You are well aware of how things work, one never really knows if the CEA is indicating growth or not until you see it on a scan. So keep on thinking the best and planning for the opposite. If it is another tumour, then here's hoping its a tiddler and can be dealt with immedietely. 

You and your husband are in my prayers.

Sue - Trubrit

Thanks Sue, it is just such

Thanks Sue, it is just such an accurate indicator for him, that chances are slim that it's nothing.  He is thinking its another bone met on his upper spine, as his neck has been bothering him.  Not a lot like his legs before the break, but enough to notice. Appreciate the prayers.

jen2012

Fight for my love said:

my husband is hospitalized

my husband is hospitalized because of kidney infection due to the ureter blockage.Just because of the infection,they did another Ct scan of pelvic and abodem,still nothing showed up.oncologist clearly says they only treat Mets,not elevated cea.surgeon did say it is not a bad idea to do a colonoscopy.so when my husband is well enough,he will do a colonoscopy. elevated cea is really like a big stone on our minds,you know you have a problem,but you can't find what is causing the problem,and you can't take action to fix it.

Sorry to hear your husband is

Sorry to hear your husband is in the hospital.  Hope he home and feeling better soon.

oncologist emailed tonight and said she spoke with the surgeon who is recommending a colonoscopy also.  

Let us us know how your husband is doing.

annalexandria

jen2012 said:

Thanks Sue, it is just such

Thanks Sue, it is just such an accurate indicator for him, that chances are slim that it's nothing.  He is thinking its another bone met on his upper spine, as his neck has been bothering him.  Not a lot like his legs before the break, but enough to notice. Appreciate the prayers.

Big hugs coming to you both, Jen.

I'm thinking it's unlikely to be a met in the upper spine, just because the cancer has to travel there somehow, and he hasn't had any node involvement showing on the scans, right?  Just going to keep hoping for you guys that this wil turn out to be ok, and whatever it is will be easily treated.

jen2012

annalexandria said:

Big hugs coming to you both, Jen.

I'm thinking it's unlikely to be a met in the upper spine, just because the cancer has to travel there somehow, and he hasn't had any node involvement showing on the scans, right?  Just going to keep hoping for you guys that this wil turn out to be ok, and whatever it is will be easily treated.

Thanks Ann.  He did have para

Thanks Ann.  He did have para aortic nodes at diagnosis, which is what made him stage 4....they were removed and he hasn't had any others light up since.

tanstaafl

getting back to scratch

Jen,  4 years ago we had a runup on CEA and the mets' growth, we never let off the cimetidine, some soft inhibitors and some oral 5FU until the day of surgery for lymph nodes (hard to get but worth it).   Once we got the big conglomerated lymph node cluster out, the chemo cocktail worked again.

The plan that made biological sense to me for a long term use, was a mild side effect level of daily chemo modulated (improved) by softer but potent inhibitors, like cimetidine, celebrex, specific vitamins and natural supplements on residual mass (surgery or chemo induction).  The lymph node mets are often lower treatment levels to kill or pause than liver/lung mets but continuity looks important.  

oral 5FU, cimetidine, celebrex  (your CA19-9 ??? didn't bother with the drs any more about it, just got it ourselves)

IV vitamin C + vitamin K2 

LEF, similar supplements + - on specific parts

Any time we get backed off some cocktail parts, CEA and  CA199 jump up, and we have to push harder and closer on the list of ingredients to get CEA/CA199 back down, to near the previous baseline.   

I doubt she will ever use -iri, -ox as too rough or erbitux, probable mutant.  Some Avastin might be a last ditch item added with her cocktail if necessary.  She's doing well today.

If you can't catch the mets on newer machine with a very high resolution PET-3CT then asking for a 3T MRI (better magnet) might be useful.

jen2012

tanstaafl said:

getting back to scratch

Jen,  4 years ago we had a runup on CEA and the mets' growth, we never let off the cimetidine, some soft inhibitors and some oral 5FU until the day of surgery for lymph nodes (hard to get but worth it).   Once we got the big conglomerated lymph node cluster out, the chemo cocktail worked again.

The plan that made biological sense to me for a long term use, was a mild side effect level of daily chemo modulated (improved) by softer but potent inhibitors, like cimetidine, celebrex, specific vitamins and natural supplements on residual mass (surgery or chemo induction).  The lymph node mets are often lower treatment levels to kill or pause than liver/lung mets but continuity looks important.  

oral 5FU, cimetidine, celebrex  (your CA19-9 ??? didn't bother with the drs any more about it, just got it ourselves)

IV vitamin C + vitamin K2 

LEF, similar supplements + - on specific parts

Any time we get backed off some cocktail parts, CEA and  CA199 jump up, and we have to push harder and closer on the list of ingredients to get CEA/CA199 back down, to near the previous baseline.   

I doubt she will ever use -iri, -ox as too rough or erbitux, probable mutant.  Some Avastin might be a last ditch item added with her cocktail if necessary.  She's doing well today.

If you can't catch the mets on newer machine with a very high resolution PET-3CT then asking for a 3T MRI (better magnet) might be useful.

Thanks Tans.  We will see

Thanks Tans.  We will see what the pet ct shows on wed. it is at a big hospital ..hopefully that means better machine.  his onc was looking into MRI, but I think we were told no more MRIs due to metal rods in both legs.

his onc wil not agree to anything at this point..cimetidine, psk, low dose xeloda, Celebrex...nothing except vit d.  He will not agree to trying another doc at this time, nor will he take things she does not okay, so there isn't much I can do or say.   well Celebrex he decided he didn't want to take as it gives him headaches,so I'm not sure if onc has an issue with that.

His cea did start to climb whe she had reduced his xeloda dose due to low platelets.  I wonder if the low platelets may be due to bone mets more than the chemo.

Since he wants to continue to use his doctor, I'm trying very hard to trust her, breathe and let go of what I have no control over.  With two teens and a toddler, I have to try to keep my head together and stay calm for all of our well beings.   I keep looking for trials, but have the feeling I will hit a brick wall there too since she will probably have him back on chemo that will disqualify him.

janderson1964

jen2012 said:

Thanks Tans.  We will see

Thanks Tans.  We will see what the pet ct shows on wed. it is at a big hospital ..hopefully that means better machine.  his onc was looking into MRI, but I think we were told no more MRIs due to metal rods in both legs.

his onc wil not agree to anything at this point..cimetidine, psk, low dose xeloda, Celebrex...nothing except vit d.  He will not agree to trying another doc at this time, nor will he take things she does not okay, so there isn't much I can do or say.   well Celebrex he decided he didn't want to take as it gives him headaches,so I'm not sure if onc has an issue with that.

His cea did start to climb whe she had reduced his xeloda dose due to low platelets.  I wonder if the low platelets may be due to bone mets more than the chemo.

Since he wants to continue to use his doctor, I'm trying very hard to trust her, breathe and let go of what I have no control over.  With two teens and a toddler, I have to try to keep my head together and stay calm for all of our well beings.   I keep looking for trials, but have the feeling I will hit a brick wall there too since she will probably have him back on chemo that will disqualify him.

I will keep you both in my

I will keep you both in my prayers.

Fight for my love

 
 
My sincere thanks to all

 

 

My sincere thanks to all of you for the thoughts and prayers.Doctors are planning to put a stent in ureter tomorrow.Hope everything goes well and we can go home soon.