Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hello, I haven't posted for quite some time because my husband has been considered " cancer free " for a year and a half. That is no longer so. They found a large brain met last week which was removed on Friday. He is home with no deficits. They believe they got it all. It was encapsulated. He will have 2 1/2 weeks of radiation starting Sept. 17. My message to everyone is don't stop with CTs of the chest, thorax, & pelvis which we did. Make sure they are checking the head as well. His original tumor caused his CEA to rise to 448. His CEA with this tumor was 0.7. I don't know if the blood brain barrier had something to do with that or not. Hubby will now also have a bone scan and PET scan. I pray that these will not show any further growth anywhere else. All other CT scans have shown no growth at all. Does anyone have any experience with brain mets from CC? Donna M. Re: Re: Have you had a colonoscopy? If there are enough people in your family who have been diagnosed with Colon Cancer or the polyps then I think it's safe to assume you know it's hereditary. Your dr should be recommending a colonoscopy for everybody in your family. Thankfully I have a wonderful dr who knows me and my family history very well. He believes in early testing if there is a first degree relative who was diagnosed. I would keep after this dr to get your sons colonoscopies done early. Dianne flipper759@... wrote: Thank you I know that It's damned heredity but it was one of the things I had to get past to cope. The thing is that at least one of the boys has the gene. I do want to see what this doctor will say about a genetic test. He did say currently they are only available in larger cities in our case Pittsburgh or Cleveland. He didn't say what he'd recommend if the boys have the gene. My guess from his attitude is THEN he'd lower the colonoscopy at 30 for them and start them younger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Oh yes! That's what Rick has been fighting since March. I don't have much time to write right now, but take a glance at the list of things that have occured, listed beneath my signature line. I totally agree with you ........ people need to start demanding a brain scan too! Talk with you soon! Donna Sisco dsisco@... S/O Rick, 50, Arkansas 09/19/02 - Diag. Stage IV Colon Cancer with 6 of 6 Pos. Nodes and 60%+ Tumor Burden in Liver 09/24/02 - 10cm Tumor removed from Colon 10/22/02 - Began CPT-11/5FU/LV Chemo - Had some shrinkage in 7 months 06/11/03 - Appt at MD - Suggested changing chemo – failing current treatment 07/25/03 - Began Oxaliplatin/Xeloda Chemo 10/20/03 - Increased Xeloda – Still failing treatment 11/12/03 - Added Celebrex - continued failure 01/15/04 - Switched to FOLFOX4 chemo 02/23/04 - CEA drops 80 points 02/25/04 - First Symptoms of Brain Problem 03/01/04 - Brain Scan (MRI/CT) 1 " Brain Tumor - Junction of Left Frontal and Parietal Lobe 03/02/04 - Began 10 Whole Brain Radiation Treatments and Decadron 03/15/04 - Last WBR Treatment 03/18/04 – Took last Decadron - extremely fast weaning process 03/22/04 - First Grand Mal Seizure (5 day hospital stay) 03/22/04 - Back on Decadron, added Dilantin & Insulin Shots (due to steroid-induced diabetes) 04/06/04 - Resumed Folfox4 Chemo with added drug Erbitux 04/13/04 – Not metabolizing Dilantin – adding Keppra 04/20/04 - Switched to CPT-11 with Erbitux 05/04/04 – Weaning from Dilantin, staying on Keppra 05/13/04 – CT Scans showed minimal shrinkage in brain tumor & liver tumors, CEA dropped from 360 to 61, also some reduction of swelling around BT 05/17/04 – Reduced Decadron to 2mgs/day 06/14/04 – CEA increases from 61 to 72.9 06/25/04 - Ultrasound of abdomen - no ascites 07/07/04 - CT of abdomen - Some focal intrahepatic ductal dilation 07/13/04 – Placed on Lasix for severe lower leg swelling and breathing difficulties 07/26/04 – CEA dropped to 58 07/30/04 - Lasix increased to 120 mgs because swelling and breathing difficulties returned ... also taking three week break from chemo because of feeling so bad and extremely fatigued. 08/12/04 – CEA up to 147 08/23/04 – Brain MRI reveals stable tumor/edema, but now has leukoencephalopathy 08/30/04 – Switching to Avastin only – eliminating chemo and Erbitux (This is only because Rick does not wish to stop fighting, and this drug seems to have less side effects) > Thank you > I know that It's damned heredity but it was one of the things I had to get > past to cope. The thing is that at least one of the boys has the gene. I do want > to see what this doctor will say about a genetic test. He did say currently > they are only available in larger cities in our case Pittsburgh or Cleveland. > > He didn't say what he'd recommend if the boys have the gene. My guess from > his attitude is THEN he'd lower the colonoscopy at 30 for them and start them > younger. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Oh yes! That's what Rick has been fighting since March. I don't have much time to write right now, but take a glance at the list of things that have occured, listed beneath my signature line. I totally agree with you ........ people need to start demanding a brain scan too! Talk with you soon! Donna Sisco dsisco@... S/O Rick, 50, Arkansas 09/19/02 - Diag. Stage IV Colon Cancer with 6 of 6 Pos. Nodes and 60%+ Tumor Burden in Liver 09/24/02 - 10cm Tumor removed from Colon 10/22/02 - Began CPT-11/5FU/LV Chemo - Had some shrinkage in 7 months 06/11/03 - Appt at MD - Suggested changing chemo – failing current treatment 07/25/03 - Began Oxaliplatin/Xeloda Chemo 10/20/03 - Increased Xeloda – Still failing treatment 11/12/03 - Added Celebrex - continued failure 01/15/04 - Switched to FOLFOX4 chemo 02/23/04 - CEA drops 80 points 02/25/04 - First Symptoms of Brain Problem 03/01/04 - Brain Scan (MRI/CT) 1 " Brain Tumor - Junction of Left Frontal and Parietal Lobe 03/02/04 - Began 10 Whole Brain Radiation Treatments and Decadron 03/15/04 - Last WBR Treatment 03/18/04 – Took last Decadron - extremely fast weaning process 03/22/04 - First Grand Mal Seizure (5 day hospital stay) 03/22/04 - Back on Decadron, added Dilantin & Insulin Shots (due to steroid-induced diabetes) 04/06/04 - Resumed Folfox4 Chemo with added drug Erbitux 04/13/04 – Not metabolizing Dilantin – adding Keppra 04/20/04 - Switched to CPT-11 with Erbitux 05/04/04 – Weaning from Dilantin, staying on Keppra 05/13/04 – CT Scans showed minimal shrinkage in brain tumor & liver tumors, CEA dropped from 360 to 61, also some reduction of swelling around BT 05/17/04 – Reduced Decadron to 2mgs/day 06/14/04 – CEA increases from 61 to 72.9 06/25/04 - Ultrasound of abdomen - no ascites 07/07/04 - CT of abdomen - Some focal intrahepatic ductal dilation 07/13/04 – Placed on Lasix for severe lower leg swelling and breathing difficulties 07/26/04 – CEA dropped to 58 07/30/04 - Lasix increased to 120 mgs because swelling and breathing difficulties returned ... also taking three week break from chemo because of feeling so bad and extremely fatigued. 08/12/04 – CEA up to 147 08/23/04 – Brain MRI reveals stable tumor/edema, but now has leukoencephalopathy 08/30/04 – Switching to Avastin only – eliminating chemo and Erbitux (This is only because Rick does not wish to stop fighting, and this drug seems to have less side effects) > Thank you > I know that It's damned heredity but it was one of the things I had to get > past to cope. The thing is that at least one of the boys has the gene. I do want > to see what this doctor will say about a genetic test. He did say currently > they are only available in larger cities in our case Pittsburgh or Cleveland. > > He didn't say what he'd recommend if the boys have the gene. My guess from > his attitude is THEN he'd lower the colonoscopy at 30 for them and start them > younger. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Hi Donna, So glad you guys found it in time to be able to do something about it. I wouldn't have thought about insisting on brain scans. Good idea. Kathy Re: Re: Have you had a colonoscopy? If there are enough people in your family who have been diagnosed with Colon Cancer or the polyps then I think it's safe to assume you know it's hereditary. Your dr should be recommending a colonoscopy for everybody in your family. Thankfully I have a wonderful dr who knows me and my family history very well. He believes in early testing if there is a first degree relative who was diagnosed. I would keep after this dr to get your sons colonoscopies done early. Dianne flipper759@... wrote: Thank you I know that It's damned heredity but it was one of the things I had to get past to cope. The thing is that at least one of the boys has the gene. I do want to see what this doctor will say about a genetic test. He did say currently they are only available in larger cities in our case Pittsburgh or Cleveland. He didn't say what he'd recommend if the boys have the gene. My guess from his attitude is THEN he'd lower the colonoscopy at 30 for them and start them younger. Quote Link to comment Share on other sites More sharing options...
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