No clinical trial now. Back to folfirnox

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No clinical trial now. Back to folfirnox

by Harts on Wed Mar 19, 2014 10:37 PM

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Hello. Got some news today. Tumor marker is up to 8569. Madison called and said I won't be in the clinical trial right now. I'm on their waiting list and could possibly start in 3 months. So, I'll be getting the old chemo folfirnox tomorrow. That's the treatment that lasts 21/2 days. I'll need 5 shots for 5 days to build up the white blood cells that will be destroyed by the chemo.

I can't lie, I'm a bit bummed. The tumor marker numbers doubling does bother me more than not beginning the clinical trial. I wasn't really looking forward to the unknown drug side effects and driving to Madison weekly. I'm also not looking forward to the folfirnox either. And I'll be losing my hair again. Urggg. It was really growing back too.

I guess I wanted you all to know that this stuff does get to me. I'm not strong all the time or positive all the time. It's real and it can be scary. But....I'm ok. Really!!

Karen

RE: No clinical trial now. Back to folfirnox

by Bryan51 on Wed Mar 19, 2014 11:30 PM

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Karen, sorry to hear about the trial and having to go back on folfornix. I know how you feel. It's an ongoing roller coaster ride. They took me off chemo because it was not slowing or stopping the legions on my liver. Pancreas tumor still showed no activity on the last pet scan. They took a sample of one of the rumors on my liver yesterday to determine the path forward. No matter what path it is I'm sure it will be just as bad as the other paths so far. Remember that you are my hero and the strongest person on the board. Keep fighting to win. Your friend, Bryan

RE: No clinical trial now. Back to folfirnox

by TFil727 on Thu Mar 20, 2014 12:51 AM

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Karen,

You have every right to be bummed!! This cancer road sucks. But you are such a strong person and such a great source of support to everyone on this site!! Just take one day at a time and don't get ahead of yourself. Best of luck to you and my thoughts are with you in this battle!! Take care.

Tonia

RE: No clinical trial now. Back to folfirnox

by PunkyD on Thu Mar 20, 2014 06:19 AM

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Dear Karen,

I agree with Bryan and Tonia.  You are definitely a survivor and a hero!  Enjoy each day. 

Sending you positive thoughts.

Punky

RE: No clinical trial now. Back to folfirnox

by maxxschiken on Thu Mar 20, 2014 01:34 PM

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On Mar 19, 2014 10:37 PM Harts wrote:

Hello. Got some news today. Tumor marker is up to 8569. Madison called and said I won't be in the clinical trial right now. I'm on their waiting list and could possibly start in 3 months. So, I'll be getting the old chemo folfirnox tomorrow. That's the treatment that lasts 21/2 days. I'll need 5 shots for 5 days to build up the white blood cells that will be destroyed by the chemo.

I can't lie, I'm a bit bummed. The tumor marker numbers doubling does bother me more than not beginning the clinical trial. I wasn't really looking forward to the unknown drug side effects and driving to Madison weekly. I'm also not looking forward to the folfirnox either. And I'll be losing my hair again. Urggg. It was really growing back too.

I guess I wanted you all to know that this stuff does get to me. I'm not strong all the time or positive all the time. It's real and it can be scary. But....I'm ok. Really!!

Karen

Karen.... can you start of with folfox (minus irinotecan) first to see if this option can bring your CA19-9s down with the cancer showing response to it?  Annie started last January with folfox only because she was a lot weaker after all the problems she had late last year.... folfox for now is working just fine with her CA19-9's declining and her pain disappeared.  Her liver and pancreas are still in remission ....  with folfox you won't lose your hair either .... its a less toxic approach and very tolerable.

JeffB

RE: No clinical trial now. Back to folfirnox

by Harts on Thu Mar 20, 2014 10:10 PM

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I had 3 treatments of Folfox in Dec./Jan. But the tumor marker continued to double. Started Folfirnow today. I'm hoping it helps. Karen

RE: No clinical trial now. Back to folfirnox

by RogerChicago on Thu Mar 20, 2014 10:31 PM

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Karen - Are you trying any natural agents (Bitter melon juice, Curcumin, Maitake, Selenium, etc) in combination with chemo now?  I think I remember you saying that you've generally done chemo only.  

Another option that has yielded great results is Alpha-Lipoic Acid in combination with low-dose Naltrexone.  There are abstracts on PubMed detailing its impressive results, including survival of over 6 years without attempting other treatments.

RE: No clinical trial now. Back to folfirnox

by cb531 on Fri Mar 21, 2014 01:57 AM

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Karen you allowed to have bad days but then turn yourself around and let the chemo begin to work sending positive thoughts your way love ya harts xo Cathy

RE: No clinical trial now. Back to folfirnox

by randr2210 on Fri Mar 21, 2014 03:08 AM

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On Mar 19, 2014 11:30 PM Bryan51 wrote:

Karen, sorry to hear about the trial and having to go back on folfornix. I know how you feel. It's an ongoing roller coaster ride. They took me off chemo because it was not slowing or stopping the legions on my liver. Pancreas tumor still showed no activity on the last pet scan. They took a sample of one of the rumors on my liver yesterday to determine the path forward. No matter what path it is I'm sure it will be just as bad as the other paths so far. Remember that you are my hero and the strongest person on the board. Keep fighting to win. Your friend, Bryan

Karen, I agree with Bryan.  Keep fighting.  You're a survivor and you'll get through this.  We're all fighting this together.  Stay strong!

RE: No clinical trial now. Back to folfirnox

by murf99 on Sun Mar 23, 2014 03:58 AM

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My wife was diagnosed with Stage IV Pancreatic cancer on Dec 23, 2013, her CA 19-9 @ that time was 23,052. We got some second opinions and eventually started her first round of folfirinox which went very badly (her CA 19-9 had gone up & her quality of life was zero). Shortly after I found a US doctor who has had good success with this disease and other cancers. She had a CA 19-9 of 40,820 when she started his protocol and now after 4 treatments of standard chemo chemicals her CA 19-9 is 4,887. His therapy is very tolerable. Another of his Stage IV PC patients started his protocol with a CA 19-9 of ~220,000 and multiple mets. Now after 16 months has a CA 19-9 of 84 and looking forward to ending the chemo therapy. Another of his patients ( Stage III PC) recently got off her chemo with her CA 19-9 @ 7. Please be cautious with your CA 19-9 numbers, my personal observation is that around 20,000 is when mets start to really pick up. 

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