Radio Embolization of a liver tumor

2seaoat wrote:I have always shared health information in the hope that others can be aware and knowledgeable about alternative treatments.  I got very bad news last Friday, and for seven hours today they began mapping my tumors and blocking certain arteries for my first asz kicking embolization at 8am next monday.

I arrived at 11:00 am and they prep you for surgery, but all they really are doing is going up an artery from your groin area to the liver.  The shave you and put the IV in with a mild sedative because they need you to respond to their instructions during the procedures.   They injected me with radioactive dye which they followed to see how it traveled through the five inch tumor on the anterior of my liver.  There could have been arterial leads to the lung and the stomach which they do not want the very powerful radiation to go beyond the liver tumor.   They found that the tumor fed into a stomach artery so they blocked the back in of the tumor today and tested to make sure there was no leakage.

The further bad news is that I will need three procedures.  If I had a chance, probably one procedure would have given me a year to 15 months.  My cousin's husband had two procedures and he had such a bad reaction to the first at Moffitt Cancer center, he almost did not do the second.  Surprisingly his final procedure went very well for him, but he was dead 15 months to the day from the final procedure.

Now Northwestern is Number 1 in the world on radio embolization, and I have that and the fact that endocrine cancer has very vascular tumors.  In my cousin's husband's situation you think of the arteries to the tumor as a door, and in the past they could only use that door once, and the vascular system shuts down and a second procedure at the time of his death was simply not available.  What has made Northwestern my choice is that they have perfected modalities for delivery which does not damage the door, and they have successfully done three or four procedures on some patients.  What this translates to is 15 months time three with high quality of life during the period the tumor load is small.  Each patient is different and each tumor's vascular system and "doors" are different but if there is a chance to get extension beyond the 15 months, these folks are the ones to do it.

Just like I pisz everyone around here,  I have managed to pisz off the doctor who will be doing this complex procedure because I complained on how they made me keep my arms above my head for twenty minutes while they were positioning my body to get the full liver shot......Having the lung removed through the left side under the arm rib area, the mere act of continuing to hold my hands over my head is very uncomfortable.......I suggested that they might have allowed me to rest for twenty minutes while they worked on that positioning........and I might have mentioned at least twice that it was a CF........Fortunately for me these Northwestern genius doctors probably do not know what CF stands for, and they apologized about not bringing my arms down.........but my luck the guy is going to put one of those beads that block an artery down little Seaoats home........and then snicker......yea I guess it is a CF.   All is good in the adventure, and I look forward to next Monday.   Family is taking me to a White Sox game Wed, and I get to see Abreu who may be the best ball player in twenty years.

2seaoat wrote:Procedure completed and we will see how the next two weeks go.   After my cousin described her husband's ordeal, I thought the worse.   I am shocked at how seamless the Northwestern Team has been and after two weeks and eight hours under machines, I actually feel much better than I suspected.  I cannot drive, but my wife will drive me to my appointments Wed, and I will crash the rest of the week.  I cannot be near children or pregnant women for three days, and could only wave at the grandkids this evening from the car.  Pretty amazing stuff......I will keep you informed regarding the journey and options they will outline, but I have not had to take a pain pill, and the nausea is not that bad.  We live in an amazing era where the medical technology and solutions are mind boggling.

QueenOfHearts wrote:Why can't you be around kids or pregnant women?

2seaoat wrote:Very bad news on Thursday's tests and scans.   My consult with the surgeon is the worse possible result.  All tumors are growing and there was no reduction in the size of the five inch plus main tumor after two procedures.   Sadly, for the first time in three years my liver functions are falling.  The clock now begins to tick.  I have been blessed that the sandostatin shots slowed everything down for two and a half years.  I wanted to post yesterday, but I figured this is pretty depressing news, but I began this journey sharing the process and I certainly will end the journey with the same mission.

They go in one more time at the end of September or the first week in October and attack the balance of tumors on the other sphere of the liver.  I made the request for medical pot, but the surgeon said I would have to ask my oncologist for the same.  I would be eligible in January, but there is a real resistance by doctors who I know to prescribe the same.   They are worried about abuse.

It now becomes difficult because no matter how upbeat I remain, I can see the looks on my wife and children's face.  They fully understand what the dropping liver functions mean and inability to stop the tumor growth.  I am having more difficulty with energy levels and walking.  I still try to walk stairs when I can, but I am so slow that people become impatient and pass.
The doctors have not given me the get your affairs in order consult which allows me some optimism that I can bump along with pretty good quality of life.   At this point, I have very little concern for quantity of life, and hope for simple quality of life.  It has been a great adventure, and it continues.