Topic: Misdiagnosis but went through gemzar/oxiloplatin

I was diagnosed as having HCC (hepatocellular carcinoma) in 12/2007. Was put on Nexavar  but that caused problems with not being aware of how to use a fork and knife, unable to dress myself, these episodes would last about 24-36 hours then all would be normal. After several of these "episodes" I was taken off that drug. Found another doctor/hospital (don't know if I should mention the center I went to).

Received same diagnosis and was put on Gemzar/Oxiloplatin every two weeks. The "episodes" still occurred about every three weeks. In May of 2008 after a 3-day comatose state the doctor decided to remove me from chemotherapy. My life expectancy was about to July/August.

In late July a dooctor called and asked if I'd be interested in a "clinical trial" of a new drug. I was only too happy to do so. I went to the clinic, filled out yards of paperwork, CAT, MRI, EKG, EEG, blood work and then a needle biopsy. Two days later the doctor called, the lab could not find evidence of HCC! To be sure my tissue samples and blood were sent to the Mayo Clinic for further testing. 6 days later, Mayo Clinic called and verified the finding of the clinic. I did not have HCC and never did! I have beginning cirohsis. What a bitter-sweet bit of news!

My question to ANYONE is what will the exposure to the chemo therapy do to me down the road? Will the attempted cure be my demise? Someone talk to me and give me your opinion on this issue......Please!

Re: Misdiagnosis but went through gemzar/oxiloplatin

glenjamin....First and foremost it is wonderful to hear that you are not suffering from this cancer.  I don't have any answer as to what damage has been done to you with chemotherapy (if any) although, I would ask the physicians that very same question.  You might also want to read up on the different agents and look at the part none of us care to look at:  the side effects, which may or may not give you some answers to your questions.  More then anything I am happy for you to not having to deal with this cancer.  Congratulations.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Misdiagnosis but went through gemzar/oxiloplatin

Glenjamin,

Your story is incredible and it sounds like you went through hell and back but I am really glad you don't have this cancer. The strange thing is that many have written posts about how they feel like this cancer is a bad dream they might wake up from someday and your story sounds something like that.

I cannot answer your question about the long term effect of the chemo, perhaps someone else on the board can.

Patty

Re: Misdiagnosis but went through gemzar/oxiloplatin

marions and tiapatty......thank you so much for your replies! I am new here and have not got this board figured out....like how do I reply to someone who has left msg for me. 

Thank you again!
Glen

Re: Misdiagnosis but went through gemzar/oxiloplatin

Glen..you are doing just fine.  There is a Quck post following the last thread.  That seems to be the easiest way of responding to replies.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Misdiagnosis but went through gemzar/oxiloplatin

Glen

I think that's a very complex question and I don't know if anyone really will have an answer to that.  I would certainly start with your oncologists and perhaps a second opinion from an oncologist that has not been involved in your care.  Anyway, just a thought!

The very good news is that they're not finding any evidence of HC or CC and that is such very good news!!! 

I did have a question after reading your post, was the biopsy that was found to be negative from the one they did for the clinical trial or a second reading on the biopsy from 12/07?  I'm just curious.  In any case, you've been given very good news and we always very much appreciate good news around here!

Wishing you all the best!

Jean

Re: Misdiagnosis but went through gemzar/oxiloplatin

Jean.....Seattle....my old stomping grounds......but.....the biopsy that was performed in August 2008 was the only biopsy done. There was no biopsy performed for the original diagnosis. That is something I do not understand. It would seem to me that a biopsy would really be the only way to really diagnose HCC. The more I ponder this situation, the more I think that a lawyer might be the best way to answer some of my questions.