HER 2 Gene + EC patients

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RE: HER 2 Gene + EC patients

by EricG on Fri Jun 29, 2012 01:48 AM

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I'm sorry - that must be very frustrating! I haven't been on Folfri, but a friend of mine with stage 4 stomach cancer (which is similar to EC) was on it and had a very good response.

RE: HER 2 Gene + EC patients

by dahp82 on Fri Jun 29, 2012 02:01 AM

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Hi...I am Praying For You... And You Husband... Dont Give UP.... I dont know any thing about.... Primary Tumor's.... Ist That Brain Cancer also... If so My son had Glioblastoma Mulitforma... And there was one chemo that came out in 08/1999 I dont know how to spell it but it started waith a T... It was for people who had Brain Cancer.... My Son Joshua when on it in 01/2000 he went off it in 3/2001 Joshua Has be in remission for 13 years now... Am not trying to give you false hope... But Its The true... Joshua Goes To Duke That's in Durham NC.... Be Bless Deborah

RE: HER 2 Gene + EC patients

by eternalife on Fri Jun 29, 2012 05:14 PM

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Thanks to everyone on this discussion thread... information is power.

Today, Mark had the Pic line put in .. apparently Folfiri, his new chemo drug that will be given next tues, can cause diarrhea that can be life threatening... so if you must take it... Immodium is the antidote... follow your doctor's orders closely, not the one on the package. One more thing to watch.. Mark in now on the second line ... after this there could be one more chemo drug and possible radiation as there has been no more metasasis...

I am most interested in hearing about everyone's journey..

please continue to post,

Best

RE: HER 2 Gene + EC patients

by tongrenhealer on Fri Jun 29, 2012 05:54 PM

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I got your private message. I would not call FOLFIRI a wild goose chase. It is frequently one of the first combos used. My husband was doing well on FOLFIRI and it was more tolerable than any of the other regimens he used in the previous 5 years. It worked well until there was a shortage of 5FU and he was unable to have chemo. Many people were able to switch to Xeloda which is the oral form of 5FU but Pat did not tolerate Xeloda well when he did EOX so this was not an option for him (although he had good results from his 5 cycles of EOX). Although he had two scans showing progress on FOLFIRI, as soon as he missed his FOLFIRI treatment, the spread in his lymph nodes went wild. We radiated the supraclavicular node which was causing the most trouble, but the cancer spread through his abdomen while he was radiating. By the time we finished radiation, the best option was hospice. He made it another 4 months in hospice while steadily declining.

Not sure why they gave your husband a PICC line for FOLFIRI. Pat had a port all through his 6+ years with stage IVb EC, and this was how he received all his treatments (unless they were orals). The diarrhea can be a real problem with irinotecan (IRI in FOLFIRI), but if you are proactive with the immodium and use it as prescribed for use with irinotecan (similar to double dosing), it is nowhere hear as big a problem.

Someone commented on herceptin testing. Pat's original tissue sample from his esophagectomy was tested several years after the original biopsy, when they began to recognize there may be a connection in EC. It was negative. He had a biopsy done in 2011 and it was retested since it had been found that the procedure to test for her2 in EC was different than the procedure for breast CA, so they used the new testing method. He was still negative. It could be they are testing biopsy samples when they are taken, without the patient specifically knowing they are checking for her2 if it is listed as part of the NCCN protocols now. This is a pretty recent development in EC.

We used several different regimens through the years. Would have to go back to identify them all, but if you are interested I can go back in the ACOR board archives. I used to list all his chemo regimens as part of my signature. They all worked for us, but he was always stage IVb so it had a way of coming back over and over. Each break got shorter and each recurrence spread a little further. I still believe the complementary alternative work we did had a lot to do with how well he did, and the fact that he responded to irinotecan over and over through the years of treatment.

I don't check this board much and mainly came in due to your private email. If you need more info from me, feel free to private message me so I know you are trying to reach me.

 

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