Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,66390,0.htm Tue, 18 Jun 2013 00:00:00 GMT Tue, 18 Jun 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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.   tongrenhealer Fri, 29 Jun 2012 00:00:00 GMT 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 eternalife Fri, 29 Jun 2012 00:00:00 GMT 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 dahp82 Fri, 29 Jun 2012 00:00:00 GMT 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. EricG Fri, 29 Jun 2012 00:00:00 GMT HELLO, We were told there was a trial this week, only to find out a day later that there is no trial, my husband will not get the drug TDM1 afterall. Tomorrow he will have a Pic line put in and will take the chemo drug Folfri... so we are off on another wild goose chase... here's hoping this drug will stop the growth of his primary tumour... Has anyone had experience with Folfri and EC stage iv or any other chemo with good results... please let me know...I am worried, the tumour is taking off now... Thanks eternalife Fri, 29 Jun 2012 00:00:00 GMT How did you locate the trial--I've been unsuccessful in finding one.  Our oncologist told us that there currently weren't any for EC, just breast ca. betsi432000 Thu, 28 Jun 2012 00:00:00 GMT Hi Eric, we met with the oncologist today, the primary mass in the esophagus has grown to  6x 6 cm, not good. It is recommended Mark get on a trial for TDM1... as early as next week... hoping for that miracle.... eternalife Wed, 27 Jun 2012 00:00:00 GMT He is stage 4, and is not on this site. I think he is in his early 40's. Good luck! EricG Fri, 22 Jun 2012 00:00:00 GMT Hi, Thanks for the info. You mentioned a young patient who is 3 years plus now from the combo chemo and now just hereceptin. What stage was he, how old ... is he on this site?   Thanks, eternalife Fri, 22 Jun 2012 00:00:00 GMT My husband did Herceptin with Oxyplatin and FU. It got us 6 more months,stage IV. There is a younger patient 37 who is actually 3 years plus , started with a combination and is now on just Herceptin. So it can vary alot. The last thing you need is more doctor appointments but a second opinion does seem to help. Especially if you have a GI Onco. good to get to a EC Onco. For sleeping we found it was better managed by the GP then Onco team. Knew my husband better and what he could tolerate. Keep asking questions, bring another family member with you, its alot and extra ears do help. Also the search engines are not picking up EC as well as they should. Just my opinion. The blogs are better, where you are talking with patients, and caregivers. jaycc Fri, 22 Jun 2012 00:00:00 GMT Thanks for the update, Eric. My husband went for his scan today... the doc did not have the results other than knowing he now has some clots on his lungs... the doc has upped the dosage on the blood thinners... I just hope he doesn't end up with a pulmonary embolism that leads to a heart attack... that is all we need. Will find out next week,whether the chemo has shrunk the primary and lymph nodes..  here's hoping... He has little appetite and naps a lot through the day.... not sure how I can help... but as a caregiver we stand on guard for thee.... Best to you,   eternalife Thu, 21 Jun 2012 00:00:00 GMT The NCCN guidelines now recommend Herceptin with certain chemos for HER2+ patients with metastatic or locally advanced EC. I wonder why more oncs don't test for HER2 and use Herceptin,, given that it is the standard of care in those situations. EricG Thu, 21 Jun 2012 00:00:00 GMT My father was diagnosed in January with Stage IV EC and he tested for those genes. Unfortunately the doctor decided to do the I believe it was Cistplatin, Taxotere and then a 5 day dose of 5FU. It wasnt until they deemed the cancer uncurable that they finally went for what they called the Hail Mary Pass and tried the herceptin with the Taxol drug. Unfortunately before we could see any progress afte 3 treatments he passed away. DSTNDANGL Wed, 20 Jun 2012 00:00:00 GMT Hello Her 2 gene + patients for EC. I would like to keep a thread going for such types. We can be better informed on the current news around Herceptin and your particular genome. My husband is + for HER 2 gene , taking Herceptin, results so far are favourable. With thanks, eternalife Sun, 27 May 2012 00:00:00 GMT