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New member here


#1

Hello everybody,

My name is Hrvoje (yeah, weird name, I know :) ), I'm 28yo average guy from Zagreb, Croatia.

After graduating from college, and due to high youth unemployment rate in my country, I decided to try my luck somewhere else so I decided to go to NY. When I was packing before my flight I felt a lump in the palm of my right hand. Thought at first it was a blister from hitting the gym, but after a couple of months that lump started growing rapidly.

When I visited a doctor for the first time, upon ultrasound check he diagnosed a ganglion cyst and refered me to a hand specialist for a punction.

The second doctor refered me to do an MRI, and after recieving the results she diagnosed me with hemangioma, a benign vascular tumour. When I found out about the price of a surgical procedure in Manhattan, i decided to buy a plane ticket and go back to my country with free health insurance for everybody.

By the time I was operated on in December '15, that tiny lump grew to a size of a ping pong ball. Professor of plastic surgery who performed the surgery told me he never saw anything like the tumour he extracted from my hand in 40+ years of his career.

I received the patohistologic results just after Christmas last year. Synovial sarcoma. My girlfriend is a doctor, and she advised me not to insert those two words into search engines, and that it is really really rare type of tumour and potentialy deadly. I restrained myself from googling it until couple of days ago, because I didn't want to lose any sleep to it.

My patohistological cubes were sent to Royal Manchester Childrens Hospital in the UK for additional testing (FISH analysis) which showed I have clear cell SS. After my doctors told me about my treatment options I decided for hand amputation and chemotherapy combo.

My hand was amputated on March 31st 2016, and chemotherapy will start after the PET CT scan which is scheduled for April 21st (next thursday). Detailed chemo plan will be done after the PET CT scan results.

Already did a pelvis\thorax\abdomen CT in January which showed no signs of metastasis. My bloodwork is great, I'm not losing weight and I'm optimistic about my future!

I'm glad I stumbled onto this online community because I need to connect with people who understand what I'm going through. My girlfriend, family, friends and doctors are great, don't get me wrong, I couldn't even imagine going through the last couple of months without them, but there are some questions, thougts and situations I can not share with them because I just can't. They couldn't understand or they just don't know the answer to.

I decided to own this fu##ing disease and I won't let it take control of my life. I adopted a puppy, ordered a myoelectric prosthetic hand and kept a positive outlook throughout this situation I found myself in.

I'm looking forward to becoming a productive member of this community.

"Tough times don't last, tough people do" is my credo.

kind regards, Hrvoje

ask me anything you want, I will do the same ;)


#2

Welcome Hrvoje! A ping-pong ball size tumor is better than a soccer ball size tumor when it comes to prognosis so keep your optimism! Are you right-handed? What is the chemo agent you will be getting?


#3

Adryamicin + iphosfamide, 6 rounds. Typical chemo from what i see here. Pet ctscan results showed nothing, but chemo will be like a preventive measure.


#4

Sounds like a good plan. This is indeed the conventional chemo regimen for synovial sarcoma. The treatment is rough and a bit like a roller coaster so take it one day at a time...