by mario33ec on Sat May 12, 2012 08:45 PM
Have been on Hereceptin for almost six months but Ct shows that it aint working no more so now I am told the next dose is 5fu and irrocentin (sp?).
Has anyone started with Herceptin and then moved onto this? Was there any success? I know that I have to worry about diarehra again but this time I will be more ready for it. I will also be getting a port and will have to wear a pump for the infusion.
any tips or personal stories much appreaciated as the journey continues.
by EricG on Fri May 25, 2012 02:25 AM
by eternalife on Fri May 25, 2012 02:36 AM
Hi Mario and Eric G,
My husband is on Herceptin for the last 5 months.. will have a scan the end of June... the mass in the right rib is gone... yes gone.. EricG, you say your friend is NED... that is such good news. The using of Herceptin on EC patients is not even a year old.. I am hoping it will the miracle cure for HER 2 gene EC patients... Please keep me posted on your news and Herceptin , guys..
Asking to be your friends....Strength in numbers...
Have told my husband to mention Tykerb + Herceptin, he is a stage iv too... thanks so much EricG for your words of encouragement..
by Whippleschmiple on Fri May 25, 2012 02:42 AM
Maybe make sure you have a 2nd or 3rd top opinion asap. I took 5FU and related Xeloda for intestinal ampullary cancer and I didn't have any diarrhea, I had the opposite problem. I had to eat high fiber. If get hand-foot syndrome on 5 FU ask about vit B6 and maybe l-glutamine and during treatment, suck on ice pops or ice cubes as may reduce tendency to mouth sores, I didn't have much issue with the sores. Keep hydrated, I needed eye drops, water near me at night,... I took frequent small meals. Intestinal cancers like colon often use 5FU/Xeloda but if spread or further stage may add oxaliplatin. Don't know if folfrinox used which has some of same drugs, is newer staple for pancreatic. Good luck.
by mario33ec on Sat May 26, 2012 12:17 AM
thanks all for your support,
I do believe that if I did not test positive for herceptin that I would have started on this proticol first. As a recall, Paul48 had this and most of his tumours are gone now.
So hopefully this will be as beneficial for me as I would LOVE to be able to drink and eat again!
by EricG on Sun May 27, 2012 10:18 PM
by mario33ec on Mon May 28, 2012 09:46 PM
Won't start new Chemo till June 4th-first I need to get surgery for a PORT first this week.
I'll keep you updated.
by Paul48 on Tue Jun 05, 2012 09:41 PM
I just finished 5 FU , with Oxyloplatin(sic) and the results were mixed. The tumors remain gone but I have two lymph nodes still showing activity. One was reduced in activity and the other had a slight increase in activity. At this point, I've not had any nasty side effects, though I was sensitive to cold and a bit tired for a few days, thereafter. I'm still running and hitting the weight room five days a week, even with the infusion bag on.
My heart breaks to read some of the posts. The only thing I can tell everyone is stay active as best You can and continue living as normally as possible. Most importantly, stay positive and focused on going into remission. And thank God each day we're here.
I start a new round of chemo to complete my journey to N.E.D. and will keep You posted regarding the next scan in two months. This can be beaten and they are coming up with new treatments all the time. Pray and ask for guidance on a daily basis. Its always worked for me.
by Whippleschmiple on Tue Jun 05, 2012 11:46 PM
I agree with Paul about being as active as possible. During xeloda I still exercised everyday but I had to do less on treadmill, more on stationary bike and elliptical, and continued to use hoolahoop and floor exercises, ... around the hand-foot syndrome which two articles have now said has been associated with increased response so it isn't all bad. Paul, if the continuation of the druges doesn't do the trick for the nodes, is there another drug in the arsenal even though I know oxaliplatin, and 5Fu/leukovorin (or Xeloda) are commonly used for intestinal cancers and my form of ampullary is intestinal too? Are they trying combos like folfirinox (some of same drugs in it) for esophageal (use it for somewhat related pancreatic)? Good luck and I agree that attitude helps a lot. I also found sometimes if I am cold exercising helps or warm drinks or warm food. J
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