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Stage 4

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

Hello all, 

 

Haven't been on here in a while, but i'm stilla around.  Diagnosed in 2010 with stage 1 rectal cancer, now i stage 4 keeps coming back.  The beginning of this year they found spots on my lungs so i decided to go back on the chemo for 4 months the oxi and those other drugs i can't think of the one that gives you the rash and the that other one.  So i was on it for 4 months and cea numbers went down then i was put on maintenance with the xeloda pills from home and the other drug given at the onc once a week for an hour.  the one that dries out skin and gives you the rash on your face.   Well my doc said if you can  you can take more pills from home cause my numbers were going back up a little at 25 (cea) so i was taking 2 more a day for a month, well not good got hands and feet syndrome and my feet and hands were all messed up, so i've been off chemo for a month, going back on the longer chemo the 3 hr every other week again to bring my numbers back down, being off for a month my numbers went from 25 to 124.   So i will get the chemo and go home with the bag for two days.  It's never ending.   I'm hoping to get two only have to do it once a month if my numbers stay down instead of twice a month.  Anyone going through this.   I'm back walking and typing again.  Thank goodness at least with the other chemo i have less side effects and i just feel crappy after the chemo for a few days.  

 

Anyone going through this, i was happy to hear alot of people are in stage 4 and are still doing well.   When your in stage 4 do you always have to be on maintenance i guess unless your numbers stay down you don't have to.

 

Any advise or hows everyone else doing in this situation.  Oh and going in for another pet scan to see whats going on hopefully not new areas.

 

Caroyn

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Welcome to the boards.

I am not stage 4 so can't offer any insight on your situation, but we do have some still posting here.

Wishing you best results.

Marie who loves kitties

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Stage 4   I also has reoccurrence in 2012.  Was on Xeloda, Folfri, and eribitux, and irrotecean at different times.  Right now I'm doing chemoemobilization Directly to the liver  

Stay stromg, and try to get through your chemo. I also had the foot and hand syndrome but it does go away.  With the breaks hopefully it will be easier on you. 

janderson1964
Posts: 2215
Joined: Oct 2011

I am sorry you are back in the trenches fighting the beast. Please let me know if there is any information advise that I can provide you through my experience.

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

Are you on maintenance chemo?

 

janderson1964
Posts: 2215
Joined: Oct 2011

I have never been offered maintenance chemo. I did see Dr. Lin in Seattle about his ADAPT therapy which combines Xeloda and Celebrex mainly as a maintenance treatment. I have been doing that for several months now but am still doing Irinotecan infusion when my blood counts will allow it.

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

Hello,

 

I heard about that,  I don't live in seattle, i'm wondering if My doctor can set me up with that here.  How is that working?  I guess good since your numbers are good right?  Is there anyway to get on that with your local doctor?  I know it's a trial and in stage 2 right?  Any other information you have on that would be great.

 

Carolyn

janderson1964
Posts: 2215
Joined: Oct 2011

I live in Virginia. I was already doing Xeloda and I asked my oncologist to prescribe Celebrex which he did (He is very open minded). I did fly to Seattle to meet with Dr. Lin to have him review my case and make some dosage recommendations. I stay in touch with him. Providing him with updates.

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

Hello,

 

Oh good, i'm going to inquire with my doctor.  And it's been helping keeping your numbers down?  Your cea?

What is your cea at?

 

 

 

Thanks

Carolyn

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

How is the dr Lin treatment working for you ? Do,u have liver mets ? What size and Nos ?

i am suddenly having another recurrence with mets which the dr has determined to be un resectable and can't be ablated. ct-pet shows 4 mets but the MRI indicates two mets and the other two it seems have fdg uptake but maybe due to healing of earlier treatment (?) as per the radiologist who made the report. However, I still have to hear from the interventional radiologist as he is yet to see the MRI scan.

the dr ( surgeon , intervention radiologist ) recommends TACE, BUT the oncologist wants to give me folfiri plus erbitux.

recent,y I have given the tumor piece from the second liver resction for pharmacogenics test - they are going to tell me of the mutations present in the tumor sample DNA and also what chemo agents etc may be useful / effective not he tumour 

have you or anyone you know done this ? Is it helpful ? 

I am also keen to also do dr Lin protocol i. It will be of any help in containing or. Delaying future recurrences .

your input is appreciated 

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 507
Joined: May 2012

I'm stage IV, I am not on any maintenance chemo.  I was diagnosed April 2012, surgery in June and chemo July -December.  I had mets to liver.  My CEA has been negative since surgery.  I have CTs every 3 months.  We are watching a couple nodules on lungs.  Have you had a PET or CT to determine if those spots are cancer?  Can they do surgery?

Trubrit's picture
Trubrit
Posts: 4859
Joined: Jan 2013

I too am Stage IV. So far, no maintanace chemo. I just had my latest blood work done yesterday, so we shall see how that goes. 

Good luck with your chemo reginme. I hope it works wonders, and knocks the socks off of those little blighters. 

Keep us posted.

Sue - Trubrit

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

Hello,

 

Yes having another one this friday.    My numbers were higher before when i had to go back on the longer chemo.  (3 hrs in the chair)

The last pet scan said suspicious activity on the lungs 4 nodules on one lung and a few on the other.. No surgery.  I could of waited and went back on the chemo when the pet scan said cancer or just go back on the chemo. so i did cause of the rise in my cea.  So it looks like the same thing now is happening. I was off the maintenance chemo for a month and that's why my cea went up but it was starting to rise while i was on the maintenance chemo but then i had all the side effects from the maintenance chemo. I took extra pills to think it would drop the cea and it might have but gave me hand and foot syndrome, so the doctor took me off the chemo until my hands and feet were better.

 

Thanks

Carolyn

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother was having heart issues, but he was on maintenance chemo of 5-FU and Leucovorin. Since he has the heart issues, they took him off both of those meds and will probably restart the chemo with irinotecan. The cardiologist has him on digoxin to help strengthen his heart. Maybe then he can go back on the other drugs. Before he got really sick last year, he was on Folfiri with Erbitux. The Erbitux caused an awful rash on his face. Monocycline and a cream helped get rid of it completely. I am thinking we will have to take it day by day. He goes for a CT next Wednesday, so we'll see what is going on inside his body.

Hang in there.

Lin

 

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

Hi,

 

I have been on erbitux and had horrible rash and grade 4 rash, pigmentation, complete drying and flaking if facial skin ( once) 

and sort of boils etc in face torso  and other areas of the body .

 

can you please inform me what cream worked and whether monocycline was taken afrter the rash surfaced or as a preventive 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

We have fought CEA / CA19-9 rises with same oral maintenance chemo doses but with more off label adjuncts, like targeted cimetidine, celecoxib (like ADAPT), PSK, 1/4 aspirin, IV vitamin C, vitamin D3, vitamin K2/K3, and many things from the Life Extension list  all at the same time.  My wife's doctors often scratch their heads, but she's 2-3 years past suggested expiration labels and in good shape. 

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