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thals high risk getting liver cancer

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baal:

 
THALS – high risk getting a HCC (Hepatocellular carcinoma)
 
Dear Friends,
 
I would like to share my latest experiences and information.
End of August, I had travelled to Hamburg for some special tests (SQUID) to check the iron-overload in my liver and the heart.
The whole tests had not been very delighted, as I had been approached by a very negative comment: you should have given better care to your treatment in your youth.
Even my sister, who joined me for this travel, was offended by the way the doctor was talking about me and replied angry to him.
During the CT, which had been done in addition to the SQUID for the heart check, they told my sister we should re-do another CT in Frankfurt, as they located some spots in the liver, which are looking different and could be tumors. I will not go into details about the emotional reaction of my little sister, etc. – I was convinced that there is nothing and/or only the extra-modular tissue, which I have as well in the lungs.
To cut a long story a short, I did the CT again in Frankfurt and the docs here diagnosed as well tumors in the liver and did a puncture to check it is something malignant or not. The result is shattering: I have a so called HCC (hepatocellular carcinoma) – in total 4 tumors in the size of 4 – 5 cm. L
 
According to my doctor it is based on the damaged cells, due to hemachromatosis/iron-overload and the liver cirrhoses as a result of same!
In fact she told me THALS patients have high risk to get a HCC.
Therefore I would like to recommend to all of you to do 2 a year a CT to check your liver. My blood results – especially the liver data e.g. GOT, etc. was always within the parameters.   
Last Friday the did another puncture in the back to count out metastases to put me on the waitlist for a liver transplantatio!
I have to wait for the results and keep you updated of the out-come.
Wish me luck….
Bye, Panos
 

Sharmin:
Panos,

I am very sorry to hear that - I am sending you prayers and wishing you luck.  Please keep us posted about your progress. 

Sharmin

Andy Battaglia:
Panos,

This is terrible news. I am so sorry. Considering your history, the doctor was way out of line with his comments. It is only through your own hard efforts that you are alive today. Is chemotherapy an option? I would also suggest concentrating on desferal to try to remove the iron stores that supply the tumors with the iron needed to grow.

Tumors need iron to grow and with high iron, there is fertile ground for cancers to develop. I agree that all thals should have regular liver scans because all chelators are not equal. Desferal is still the best chelator to remove liver iron. Combined with deferiprone which is best for the heart, it's the best chelation program currently available. Even with this combination, liver and heart should both be scanned so that doses can be adjusted when needed.

Dori:
Panos, es tut mir weh :( es macht mir traurig ;-(((( Ich denke an sie and ihren familien. Lassen sie mich wissen ob ich etwass tun kann.

SüBe grüBe, Dori

I would have been so angry at that first doc. I was already wondering were you have been as you were so happy you had the opportunity to go.

(..)


How's your sister?

We are all here for you.

Lena:
Pano,


we have already talked about it in private. I wish you luck. Do not let it down, doctors and medicine can do miracles!
Keep us posted.

Lena

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