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Dangers of TACE

renw's picture
renw
Posts: 282
Joined: Jan 2013

I had my fourth TACE treatment this month in Frankfurt and this really brought home the point of just serious this procedure is. It can kill you, and apparently it almost killed me. The first three were painful, and I had problems walking for several weeks afterwards, but generally there were no other chemo related  side effects which is what I loved about this procedure. This time round things were very different.

To summarize: My immune system had been all but wiped out which resulted in a massive systemic infection and high fevers. I got the worst cold sore outbreak I had ever seen and I looked like a freaking duck. I got a bowel infection with a rather nasty bacteria that took over. I swelled up like a baloon with gas, and about 8 liters of water in my abdominal cavity. I became aneamic and needed transfusions. My platelet counts dropped to 22, which is about 6 times lower than the minimum range so needed platelet transfusions. I was told that my bone marrow had been damaged. My liver  swelled up by 20 cm which did not help.  I lost weight and hit an all time low of 51kg, mostly muscle mass. The doctors at hallwang did a pretty good job of putting me back together and was told that had I arrived 2 days later I would most likely not have made it.

So what went wrong? The radiologist decided to try and be helpful and added a new chemo to the existing cocktail and for good measure used double the standard dose. The Hallwang oncologist was furious when he found out and although the phone conversation that took place was in german it left little to the immagination. Next week I am back in Frankfurt for TACE #5.

The full story with all the details on my blog: http://www.mcrc4.com/?p=4755

jen2012
Posts: 1184
Joined: Aug 2012

Ren - sorry you went through so much - scary!  Glad you are up to posting and sharing again.  Since my husband does not have mets in the liver, I have not done much reading about treatments, but it's hard to not notice all of the folks who have had the pump at Sloan, with Dr. Kemeny.   Is that something you have looked into?  Seems that she has had lots of success with it. 

Annabelle41415's picture
Annabelle41415
Posts: 4181
Joined: Feb 2009

You surely went through quite an ordeal.  I'm glad that they got to treatment soon after to help heal you.  I'd be scared to tried it again though.  Make sure you get someone who knows what they are doing next time and are just not trying to make you into a guinea pig.  Glad you are feeling better and I'm hoping that the next treatment goes much better.

Kim

renw's picture
renw
Posts: 282
Joined: Jan 2013

This is prof. Vogl, there is no one better in the world at this. It could have been the double chemo dose or it could just be that the embolization failed and the chemo leaked out of the liver. Either way tace has been helping so can't afford to stop now, but I will certainly be more nervous next time.

herdizziness's picture
herdizziness
Posts: 3387
Joined: Apr 2010

will have fingers and toes crossed that your next TACE is uneventful.  My gosh, that had to be scary.  Glad they were able to put you together again.

Winter Marie

emma_s's picture
emma_s
Posts: 22
Joined: Mar 2013

or do the next treatment for free - it's a small conpensation for what you got through.

Hope this time everything would be fine.

Cheers!

 

 

annalexandria's picture
annalexandria
Posts: 2169
Joined: Oct 2011

so checked out your blog yesterday and was shocked at what you've been through.  It sounded truly horrible.

I hope the next TACE is easier on you.

And I can't believe they would add a new chemo and double the dosage to boot, all without telling you.  I realize you probably don't have the energy to be making complaints, but it seems like this ought to be brought to someone's attention.  

Feel better soon!

AA

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

I'm glad you turned around. It's scary that we are at the mercy of doctors that are just as human as anyone else. I'm only 4 months into my journey and I had to deal with two mistakes already. First time the doc gave my only half of the dose I needed for 8 days. Second time the doctor raised my dose by 25% and I got really sick too. Nothing like you though.

I'll be honest with you, I ask everything from the nurses and look at the bags myself, double checking everything.

Anyway, wish you the best with your ongoing treatment.

Laz

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

world does a RADIOLOGIST just "add" another drug to your cocktail???? Surprised Maybe they do things different in Germany, I don't know.  I live in the states.

Seems pretty scary than someone can willy-nilly mess with your treatment, IMO.

 

Hope the best possible outcome to your tx.

Angela

 

P.S.  I always check Robert's bags to make sure he's getting what he's supposed to be getting.

Never can be too careful.

 

 

traci43's picture
traci43
Posts: 411
Joined: Jul 2007

Ren - glad to hear you amde it through another TACE, but at what cost!  I hope Dr. Vogel dials back a bit for #5 we want you around for sometime.  I'm not sure I'd be willing to try again after that.  You're pretty amazing.  I hope it continues to help you.  Traci

Chelsea71
Posts: 1167
Joined: Sep 2012

Glad to see your post.  Had already read about your recent troubles on your blog.  I was shocked by your weight.  Have you been able to put any back on?  This Dr. Vogl is my kind a guy.  Perhaps he did get carried away with his orders but desperate times call for desperate measures.  Clearly he has your best interest at heart.

 

Hang in there.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

2013-09-19

JodieJ
Posts: 2
Joined: Jan 2014

That's pretty scary. I've so far had 5 sessions of TACE with dr Vogl & can't fault it. 

I have a rare form of sarcoma so this was the best way for me to treat it. Not cheap & I have to raise the money somehow but my oncologist in the UK is pretty happy so far with the results as am I. 

 

Glad you're ok Ren & please just tell Vogl... As someone who knows his quirks I'm sure he'll be ok. I once asked him if I was going to die... He said no, I've got my statistics to worry about... So I'm sure he'll be ok if you do say something & Julia will certainly be able to help with any problems you have. X

Chelsea71
Posts: 1167
Joined: Sep 2012

Hi Jodie.  This is an old post from last year.  Unfortunately Ren passed away in October.  Good luck with your treatment.

ketziah35
Posts: 1138
Joined: Jun 2010

Start another post tonposeyhe question.

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