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Response to FOLFOX/HERCEPTIN

Dad'sfight
Posts: 155
Joined: Feb 2013

Went to Mayo clinic for f/u yesterday. Dad had MRI of brain (thought possible cancer) and 3mo PET to re-stage after FOLFOX/HERCEPTIN. We were given great news.  Dad's tumors (2) in hip area went from 8 uptake to 2.5 uptake.  Significant shrink considering he has only had 2 sessions out of 12. The doctor seemed very pleased and said we would do another re-staging Dec. I'm hoping at that time we are TOLD NED!!! I know he's Stage 4, but maybe there's a chance :). The doctor did say with this progress Dad will get a month off in Jan. Well over due if you ask me.  As far as the MRI, we haven't gotten the results, but nothing was on PET.  I could jump and scream I'm so excited. It would seem crazy to some being he's a 4, but this is the one and only time since this started in 9/2012 that we've been told something positive after a PET. I'm CELEBRATING!!!

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Tina, I have been watching and waiting....so happy for you and your family!. Hugs, and celebrate!

Deathorglory
Posts: 67
Joined: Jul 2013

Hello,

 

I'm also a Stage IV (recurrence in lung)guy who had folfox & herceptin.  Two years ago I was told 7-8 months was the expectation.  I am NED as of July (just had my latest CT done this Wednesday & will get results back next Tuesday).  The treatment regimen I was on was pretty brutal.  Folfox (specifically the oxaliplatin) is truly hard core stuff.  My oncologist said not very many folks make it to 12 rounds; most stop after 8-9.  I did 12 (although I couldn't have done a 13th) and I'm still enjoying some of the long-term/permanent side effects.  All-in-all, I'll take the side effects as long as I'm still here to complain about them.  The herceptin has continued (I just went over 100 straight weeks w/herceptin) and in my non-medical opinion it is quite effective at keeping further recurrences/metasteses at bay.  I wish you similar success on your journey.  Keep on fighting it.

 

Ed

Dad'sfight
Posts: 155
Joined: Feb 2013

Thanks Laura!!!! Any news with Larry's results yet?

Dad'sfight
Posts: 155
Joined: Feb 2013

ED,

The side effects havn't happened yet for dad, but I do know they are in his near future. Were you told NED after 12, or sooner than that?  I feel good about this, because it was only 2 sessions and 2 treatments with Herceptin and we have these kind of results. Your right, they did tell us this chemo was the worst. For weeks we would watch all these people getting treatments walk by well dressed, smiling etc....Here we are with dad, sweats, vomitting etc... So I finally asked why him and not any of them, and thats when they said he is getting the worst. Made us feel a little better. LOL My father was also told in 6/2013 4-8months without chemo, 12months if we are lucky with.  With that poor outlook I switched him to Mayo, and what a blessing it has been. We will have to keep in touch, I wish you all the best with this journey. Gosh, you give me hope, GOD BLESS!!!

Deathorglory
Posts: 67
Joined: Jul 2013

I was told the tumor was shrinking during treatment and was told there's nothing at all showing up on the PET/CT after I completed the treatment.  The herceptin can really be a powerful adjunct to the folfox.  My belief is that the herceptin allowed the folfolx to kill the cancer much more effectively and that it is now holding off another recurrence.  There's no real data for long term herceptin use with EC, so my doctor doesn't disagree with my thoughts, but she can't conclusively agree either.  I may just be an anecdotal instance of a guy with a really good response.  I hope I'm not and folks like your dad can have great success.  

 

The side effects were sneaky.  Each time they were a little bit worse than the time before.  And each time it took just a little bit longer to recuperate.  After the 11th round, I recovered completely (but barely).  After the 12th, I was an absolute train wreck and I still haven't recovered a year and a half later from some of the stuff.  But, again, as long as I'm complaining about it, I'm winning.

 

Switching to The Mayo Clinic is, at least to me, a wise move.  EC is serious business and I think dealing with world class folks is the way to go.  

 

Wishing you the best,

 

Ed

dfd24
Posts: 84
Joined: Mar 2011

That's great news.  Glad the treatment is working. all the best, danièle

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