Anyone been treated with Xeloda and Temodar?

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Anyone been treated with Xeloda and Temodar?

by glhalffull on Thu Sep 04, 2014 02:10 AM

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Hi I have carcinoid, tumor in small intestine, with mets to lymphnoids, small spots on liver, and in the bones. For the last 5 years have been on Sandostatin and xgeva with good success. Pretty much stopped the growth until last fall. I Started the Xeloda and Temodar, 2 weeks on 2 weeks off, in January. My bone pain completely went away for about 4 months. Then a few weeks ago, it was like someone flipped a switch and the pain was back full force. Strange. Get a new scan next week. Has anyone been on this treatment for any length of time? What was your reaction and how long is it effective for? I was hoping it would be longer than this. Don't get me wrong, I am very greatful that I've done this well so far. Much better than I ever expected. Thanks for any info. God Bless to all.

RE: Anyone been treated with Xeloda and Temodar?

by SweetieStarr on Fri Oct 10, 2014 12:19 AM

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My mom has neuroendocrine (not carcinoid) and is on the same regimen.  She has had a lot of pain in her ribs, which the doctors think is inflammation caused by the treatment.   Otherwise, her side effects have been more mild.  After 3 cycles of CAPTEM the scans still showed progression.  We are waiting for all the scan results after her 4th cycle.

RE: Anyone been treated with Xeloda and Temodar?

by glhalffull on Fri Oct 10, 2014 02:49 PM

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On Oct 10, 2014 12:19 AM SweetieStarr wrote:

My mom has neuroendocrine (not carcinoid) and is on the same regimen.  She has had a lot of pain in her ribs, which the doctors think is inflammation caused by the treatment.   Otherwise, her side effects have been more mild.  After 3 cycles of CAPTEM the scans still showed progression.  We are waiting for all the scan results after her 4th cycle.

Sorry to hear about your Mom. I am not on a cycle regimen. I have been 2 weeks on 2 weeks off since January. 1500 daily days 1-14 on the Xeloda; and 200 daily days 10-14. I was happily surprised that my scan has remained stable. My Doctor believes that I just jarred something and it brought my pain back. A month has gone by since my scan, and the pain is receding again. Side effects have also been mild.  I'm surprised that your Mom's pain hasn't gotten better with the treatment. I know that celebrex is for arthritis, which I also have, but it works on inflammation and is awesome with pain. I would ask her Doctor about it.   I have just said a prayer for her and for you. God bless, and good luck to you.

RE: Anyone been treated with Xeloda and Temodar?

by SweetieStarr on Fri Oct 10, 2014 03:56 PM

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By cycle I meant 2 weeks on and 2 weeks off.  We do Xeloda at 2500 mg daily on days 1-14 and Temodar 240 mg on days 10-14.

We just got some scan results that are mostly stable, although they did see one new small lung tumor.  Does that mean it is working if there is still a new tumor?  Our doctor said it's keeping it under control, but in my opinion it just seems like it is slowing the progression but there is still new growth.

The pain does get better when she's on her off weeks, but it hasn't gone away yet.  The scan did show some inflammation also.

Thank you very much for the prayer; we need it.  I am researching and it seems like they don't support all the options I have found. 

RE: Anyone been treated with Xeloda and Temodar?

by glhalffull on Fri Oct 10, 2014 05:38 PM

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On Oct 10, 2014 3:56 PM SweetieStarr wrote:

By cycle I meant 2 weeks on and 2 weeks off.  We do Xeloda at 2500 mg daily on days 1-14 and Temodar 240 mg on days 10-14.

We just got some scan results that are mostly stable, although they did see one new small lung tumor.  Does that mean it is working if there is still a new tumor?  Our doctor said it's keeping it under control, but in my opinion it just seems like it is slowing the progression but there is still new growth.

The pain does get better when she's on her off weeks, but it hasn't gone away yet.  The scan did show some inflammation also.

Thank you very much for the prayer; we need it.  I am researching and it seems like they don't support all the options I have found. 

Glad to hear your Mom is mostly stable. I know how you feel though, just when you think you understand what's going on, there are always new questions. Unfortunately with these diagnoses I have learned that stable is a good thing, shrinking rarely happens.  However, I just read your new post and noticed your Mom also has it in the bones as I do. Even if she doesn't have arthritis, the Celebrex should help her with her pain, it works much better than pain pills, at least for me......

RE: Anyone been treated with Xeloda and Temodar?

by PNETSurvivor on Wed Jan 07, 2015 04:44 AM

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I have pancreatic neuroendocrince tumor with metastasis to the liver, bones, and lympnodes.  I was diagnosed in June 2010, actually misdiagnosed with a different type of cancer which delayed me receiving the proper type of treatments until January 2013.  I started on Sandostatin LAR, whcih didn't work in stopping or shrinking growth.  In August 2013 we tried Afinitor and Sandostatin LAR for five months and still saw progression.  In March 2014, I started on the CAPTEM (Xeloda/Temodar) cycle of two weeks on/two weeks off with Xeloda on Days 1 - 14 and Temodar on Days 10 - 14, and remained on the Sandostatin LAR and added Xgeva for bone strengthening and to help with the bone mets.  My Chromagranin A went from 67 down to the normal range after my second cycle, and my CA 19-9 went from a high of over 4500 to 61 as of last month (still high but so much better than 4500).  At my last scan and appoinment in November, my specialist said I'm a "miracle" considering where I was in 2010 and where I am today.  I haveyet to experience bone pain, though my hands and feet are quite numb from the cumulative affects of 4.5 years of various chemo treatments. And of course the related faigue and fuzzy-brain, though I think much of that is also related to the amount of time I've been receiving treatments.  If you're still on Xgeva, perhaps this is what's causing your bone pain? I hope this helps :)

RE: Anyone been treated with Xeloda and Temodar?

by glhalffull on Fri Jan 30, 2015 06:03 PM

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On Jan 07, 2015 4:44 AM PNETSurvivor wrote:

I have pancreatic neuroendocrince tumor with metastasis to the liver, bones, and lympnodes.  I was diagnosed in June 2010, actually misdiagnosed with a different type of cancer which delayed me receiving the proper type of treatments until January 2013.  I started on Sandostatin LAR, whcih didn't work in stopping or shrinking growth.  In August 2013 we tried Afinitor and Sandostatin LAR for five months and still saw progression.  In March 2014, I started on the CAPTEM (Xeloda/Temodar) cycle of two weeks on/two weeks off with Xeloda on Days 1 - 14 and Temodar on Days 10 - 14, and remained on the Sandostatin LAR and added Xgeva for bone strengthening and to help with the bone mets.  My Chromagranin A went from 67 down to the normal range after my second cycle, and my CA 19-9 went from a high of over 4500 to 61 as of last month (still high but so much better than 4500).  At my last scan and appoinment in November, my specialist said I'm a "miracle" considering where I was in 2010 and where I am today.  I haveyet to experience bone pain, though my hands and feet are quite numb from the cumulative affects of 4.5 years of various chemo treatments. And of course the related faigue and fuzzy-brain, though I think much of that is also related to the amount of time I've been receiving treatments.  If you're still on Xgeva, perhaps this is what's causing your bone pain? I hope this helps :)

Sorry it has taken me so long to write back. I was on  Xgeva a couple of years before the pain started, so I don't believe it is that. We have increased my Celebrex again, and the pain is gone completely for now. I'm on the highest dose, so I dread when it's not enough anymore. But today is a good day, right? :-)  I will be getting my next scan in the next month or 2. The Xeloda/Temodar seems to be a good combo. I've been on it a year now, and my last scan was still stable.  I'm glad you finally got the right combo. I know what you mean about "fuzzy brain" ! I'll know what I want to say and different words come out of my mouth. Good thing I have patient people around me.  Please keep me updated on how you are doing. Good luck to you, Mary

RE: Anyone been treated with Xeloda and Temodar?

by Randolph51 on Fri Sep 04, 2015 08:07 PM

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I was part of Dr. fine's clinical study with CapTem. The cocktail of Xeloda and Temodar at low dosages. I had a tumor in my small intestine and two large tumors in my lymph nodes. Nothing in the bones but my liver was covered 30-40%. Started the program in 11/2009 and stayed on it until 6/2015. The liver tumors dropped to almost nothing perhpas 4 approaching the size of 1cm and the rest looked like pin prcks. The remaining tumors in the small intestine and lymph node became stable and didn't change size at all. 7/2015 they were removed by Dr Fraker at Penn. The. next move for me is to treat the remaining liver tumors and frankly not sure how. I suspect embolization of some sort, bland chemo or Y-90. There seems to be mixed reviews on what is best. For what its worth Fine predicted and was correct, at least in my case, that if shrinkage were to occur it would not happen for at least 6 months if not a year. After about 10 months my markers started to drop and the scans showed reduction. At about 3 1/2 to 4 years the scans and number got to a minimum but constant level. Good luck

RE: Anyone been treated with Xeloda and Temodar?

by blessedagain on Thu Oct 08, 2015 05:35 PM

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On Sep 04, 2014 2:10 AM glhalffull wrote:

Hi I have carcinoid, tumor in small intestine, with mets to lymphnoids, small spots on liver, and in the bones. For the last 5 years have been on Sandostatin and xgeva with good success. Pretty much stopped the growth until last fall. I Started the Xeloda and Temodar, 2 weeks on 2 weeks off, in January. My bone pain completely went away for about 4 months. Then a few weeks ago, it was like someone flipped a switch and the pain was back full force. Strange. Get a new scan next week. Has anyone been on this treatment for any length of time? What was your reaction and how long is it effective for? I was hoping it would be longer than this. Don't get me wrong, I am very greatful that I've done this well so far. Much better than I ever expected. Thanks for any info. God Bless to all.

I have been on both medicationa for GIST (which was removed) and a neuroendocrine tumor (that remains after a whipple sugery in 2011) since 2012, my tumor has  continued to slowly shrink. I take both medicines at night to reduce side effects. Periodically I take ibuprofren for headaches. Side effetcs are much better now but it was tough in the beginning (nausea/dizziness). My rule-everyday is a good day. Im just happy to be here! I hate taking the drugs but today they are my friend.  I work full time and travel 3X a month. Tip-drink plenty of water.

RE: Anyone been treated with Xeloda and Temodar?

by frankarelli on Thu Oct 15, 2015 12:08 AM

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Hi , i have similar carcinoid in small intestine. initially had mets to liver which led to me going to doc and getting diagnosed(2009).

Had chemo(Xeloda) and radiation late 2009 which worked well in reducing liver mets.

Pain in back led me back to oncy in 2014 for another diagnosis , which found cancer in some glands , thyroid, brain, tumor on lower spine , and hips . Another round of Xeloda and radiation followed reducing the pain and symptoms immediatly.

I do a lot of juice nowdays - betroot,carrot,ginger, lemon are the main ingredients- apple , pear , cucmber i add when in season(cheap).

I also do essiac tea , and have changed my diet to eat a lot less meat and more fresh fruit and veg .

I have just had another Pet scan to see extent of C and get results soon (cross fingers).

Be positive and fight on .

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