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Apr 28, 2011 - 5:03 am
UPDATED COMMENTS skip reading this post as it discusses liver damage from chemo that may result in death. sorry about upsetting anyone, have made the title more accurate and put in a warning at the front. again apologies for anyset caused by the original title not being specific enough. I still hope we all make it and have a great day, but being informed of the risks and issues of our treatments is why I come here, as well as all the great support. Now I am finished folfox, I am curious about my long term side effects peripheral neuropathy and impared liver function as my most recent blood test was the worst for liver function. I am also aware that the liver function numbers can indicate mets per surgeon. So I have been reading about liver funtion tests. This study came out of that research. we all know death can result from chemo complications, the specifics of the nature of liver damage is what I am interested in. I wanted to raise awareness and to share what I have found, its what I have been reading about due to my oiwn impared liver. Now I know I am stage 3 and this study applies to stage 4. I thought the stage4 folks would be interested if they were not aware of the complications that can result from irinotecan. from the study "Steatohepatitis, especially due to irinotecan, is associated with increased postoperative mortality. Sinusoidal obstruction syndrome, a severe form of vascular hepatic lesion, associated to oxaliplatin, seems to be linked with an increase of postoperative morbidity" I am interested in trying to help my liver repair itself from oxaliplatin damage. I am aware of our livers amazing rebuilding capacities, and this demonstrates the serious damage chemo must be doing if it cannot recover from it. I also take heart from my own liver friendly diet during chemo that I did my best to support this critical organ that gets worked very hard during chemo. Realising the specifics of the possible liver damage that may result from oxilaplatin and or itinotecan may help some others do research into how to support their livers by diet, water or whatever they find. They will certainly be more aware of side effects and monitor and understand liver function tests more closely. My own personal opinion is that while chemo has benefits its side effects are not explained in as much detail at the start. I would have liked to be clearly advised about liver function issues post oxaliplatin. The sarcasm "the joy of chemo" is how I feel. We are dammed if we do, we are dammed if we don't. Maybe this is my way of venting some frustration at the realisation of the true nature of the damage oxaliplatin has caused. Now I am through the treatment I have the luxury to deal with side effects. especially now my gut has settled down. ORIGINAL POST the joy of chemo ???????????????? hugs, Bull Cancer. 2010 May;97(5):559-69. Abstract RESULTS: Studies concerning the link between hepatic steatosis and chemotherapy have contradictory results but steatosis is clearly associated to an increase of postoperative morbidity. Steatohepatitis, especially due to irinotecan, is associated with increased postoperative mortality. Sinusoidal obstruction syndrome, a severe form of vascular hepatic lesion, associated to oxaliplatin, seems to be linked with an increase of postoperative morbidity, but not mortality. Bevacizumab would not increase, when used in combination with oxaliplatin, the rate of postoperative complications. Some studies suggest a decrease of vascular hepatic lesions when bevacizumab is administered with chemotherapy. The literature concerning hepatic toxicity of anti-EGF-R antibody is freak. CONCLUSION: The fact that irinotecan may be linked to an increased risk of hepatic failure and postoperative death, which is not the case of oxaliplatine, must be taken in consideration in the choice of the preoperative chemotherapy before resection of hepatic metastasis of colorectal cancer. PMID:20167564[PubMed - indexed for MEDLINE] Publication Types, MeSH Terms, SubstancesPublication TypesEnglish AbstractReviewMeSH TermsAntibodies, Monoclonal/administration & dosageAntibodies, Monoclonal/adverse effectsAntineoplastic Combined Chemotherapy Protocols/adverse effects*Camptothecin/administration & dosageCamptothecin/analogs & derivativesColorectal Neoplasms/pathology*Fatty Liver/chemically induced*Fatty Liver/pathologyHepatic Veno-Occlusive Disease/chemically induced*HumansInfusions, Intra-ArterialLiver Neoplasms/blood supplyLiver Neoplasms/drug therapy*Liver Neoplasms/secondaryLiver Neoplasms/surgeryOrganoplatinum Compounds/administration & dosageOrganoplatinum Compounds/adverse effectsSubstancesAntibodies, MonoclonalOrganoplatinum CompoundsbevacizumabcetuximabpanitumumabirinotecanoxaliplatinCamptothecin See all... All links from this record Clear Turn Off Turn On [Hepatotoxicity of metastatic colorectal cancer chemotherapy: systematic review]... |
Joined: Apr 2011
milk thistle
You've been taking milk histle since dx. Your liver enzymnes are now elevated. Will you continue to take milk thistle?
Joined: Nov 2010
a really good question
I believe the milk thistle may have helped me make my 12 folfox without missing a beat or any serious liver damage.
i am wanting to try adomet and not sure how it works with milk thistle ?
i will run this past my naturopath's first.
my intention is to contine to take a liver tonic.
Joined: Aug 2010
I didnt get the exact count,
I didnt get the exact count, just told me was way up. Think said from a 49 to 70 (does that sound right?)Dont have the report eiother. My Onc just reads a bunch of numbers off.
Joined: Nov 2010
thanks kenny
hi kenny,
my onc have given me a copy of every blood, i did have to push them.
it could easily be AST <40 MINE 79, ALT<40 MINE 82 OR GGT<50 MINE 185 one of the numbers.
these almost doubled since the previous months test
hugs,
pete
Joined: Oct 2010
I am stage 3c. I had the
I am stage 3c. I had the tumor which remained in the colorectal area and 6 out of 12 lymph nodes removed during surgery. I am taking folfiri now with 2 more to go. This after my onc taking me off folfox after 6 treatments. I do wonder what is happening to my body. But I also know that I am in a fierce fight for my life right now for the sake of my 4 kids. I am going to do anything and everything I can to remain their mother for as long as I can. I hate the way folfiri makes me feel. I get a feeling of doom at the thought of taking it and my body feels terrible taking it. But if I do die at the hands of chemo my kids will know I did the treatment, the diet, the desire to live for me and for them.
Gail
Joined: Nov 2001
It is a matter of perspective
Back in 98 I asked my oncologist what the long term side effects of my chemo would be . His exact words were Ï don't know and I really can't worry about it. If we find something that kills cancer and is survivable to the patient we are obliged to use it". We had a good discussion and in the end I agreed that yes desperate situations require desperate meaures. I have suffered some pretty bad long term effects of chemo ,or so they think. BUT I have equally bad side effects from arthritis drugs ,so I guess I have a 50/50 average. BUT I am still alive and the past 13 + year has not been all bad I have Lived ,Loved,worked and played. My philosophy is to consder things before I do them but once I have reached a descision there is no regrets and I don't worry about what ifs. Worry will kill you long before what you are worried about.
Don't get downhearted Pete and don't give up,once you get used to them ,feet taste pretty good. Just remember that some of the worlds greatest thinkers and inovators thought outside the box.
Gail don't forget that I was an aggressive st3c with 6/13 nodes affected ,you can beat it and hang around to a granny and if you don't mind me saying you look perfectly fine to my old eyes.
I am and always will be an accidental tourist of ca . I don't know anything special that helps me survive I just do it and try to support all those who are fighting it. We are all in the same boat please be kind to eack other,Hugs to all .Ron.
Joined: Mar 2009
Hey
Hey Gail, Ron and Pete, I beat you both (not that's something to be proud of lol) Stage 3, 10/11 lymph nodes infected. I'm sure there are other stage threes out there, who could beat me. :-) Just trying to liven up this thread, by being annoying I suppose lol, sorry 4.20am here, slept only two hours.
Joined: Oct 2010
Hey Girly
Sonia....it's late what are you doing silly?
Gail
Joined: Nov 2010
it won't come to that
the message of this post, is evasive action.
avoid irinotecan if you can,
avoid folfox liver damage using adomet if you can,
its what i use as of today.
take adomet (SAMe) on folfox to give you a better chance.
sorry i just learned about adomet yesterday. it would have really help us on the folfox express.
avoid conflict, hard here sometimes, but i am still smiling.
hugs,
pete
Joined: Feb 2011
Again???
It seems like every time I stay away from here for a few days, when I come back there's some brouhaha going on. We all need each other and I hope y'all learn to play nice :(
Pete, I thank you for presenting information that cancer survivors can use to better their health and to make good treatment decisions for themselves. Personally, I appreciate most just these sorts of opinions and facts presented for here...the emotional support is wonderful, but gaining information is my top priority here.
~hugs~
Janine
Joined: Nov 2010
thanks janine
hi janine,
sometimes they shoot the messenger. lucky i got a bullet proof vest.
your kind words are healing the bite marks.
i wish irinotecan was the harmless drug they present, you the liver deaths are not mentioned in the drug side effects anywhere on the net. fun about that. joking its really sad.
hugs,
pete
Joined: Aug 2010
Thanks pete. Let us know if
Thanks pete.
Let us know if the Adoment helps.
Joined: May 2005
One size does NOT fit all
One person's cure is another person's poison.
Cancer kills, that's a fact. All the rest of this stuff are studies and/or opinions. If cancer were that easy to beat there would be a cure. It's not the same for everyone as how to to beat it. I've been off/on irinotecan for the better part of 5 years in my 7+ year journey with cancer. I believe that it helped me but of course no one will ever know if something worked or not since if I didn't take it, maybe I'd be here anyway. I do know people who didn't do things the way I did in the order I did and they are no longer here. What exactly does that mean? I have no idea. I know what has worked for me to date and see no reason to break something that is not broken.
This is like all of the other Hot Topics (God/religion/politics/cancer cures).
All of us are never going to agree.
Just like cancer, that's a fact!
-phil
Whatever floats your boat.
I liked that there was a warning at the beginning of the post at least.
Joined: Oct 2009
Hi Phil:
Glad to see you posting and checking in on us. The original post had no warning, it was changed midstream.
Best wishes - Tina
Joined: Nov 2010
hi phil,
hi phil,
at lewast the warning is appreciated, but what about the message ?
i am glad you and many go well with irinotecan,
why this side effect ain't documented in your chemo doc
well thats a question all users may want to ask.
why you tough stage 4 don't know about this ? well, its your issue ?
it effects me in a general way, because i wll make informed consent and our medical systems have room to improve.
awareness means we can take evasive action.
i'll bet at least a few onc don't know about this, why don't they tell you guys otherwise ?
as really informed medical consumers we actively push the quality of our care up.
the real benefit of this thread has been lost in discussion.
knowledge and science and saves lives.
we take our treatments, do we want to know the side effects ?
thanks for replying, "why is this a hot topic ?" because you stage 4 are not informed.
maybe peoples anger or frustration should be directed towards the cancer fight, maybe thye can ask onc why ? or gee how is my liver ? can i take SAMe like folfoxers, will this help me ?
pete
Joined: May 2005
Fair Warning?
Hmmm, I understand that the warning was an afterthought. Might have been a good idea to put it there before the $hit hit the fan.
Too much ibuprofen can cause liver damage for crying out loud, I'm really not that worried about the chemo. I wanted aggressive treatment and I'm happy as hell that I've gotten it. I was aware of what I was getting into from the get-go. I was also aware that doing nothing or other treatments was not for me.
As far as your post goes, I read some of it but I didn't care to finish it. I saw no benefit for me in it. I'm comfortable with my choices. I am not sure how helpful it was to others either. I am having a hard time making sense of this post I am responding to, lots of typos...
I don't even know how to respond to ""why is this a hot topic ?" because you stage 4 are not informed" I'm not sure I know what you're trying to say to me.
I kind of equate your post with when I see someone post that the are "finally NED!!!"
Do you have any idea how many times in the past few years I've read that only to read 3 months later that "it's back..I'm so bummed". I could post that they shouldn't celebrate too soon but I congratulate them or I say nothing. The same goes for the 12 round/cycle/dose of chemo stuff. "Only 3 more until I'm done with chemo!!!" I heard that myself once... 243 chemo's ago. I don't tell them "well don't bank on it". So I feel that warning people of potential risks and making something out to be the boogey-man are different issues.
You ask "why is this a hot topic?". You're joking, right? There are hundreds of ways to beat cancer or die trying. People don't agree on treatments just like they debate God's existence of if Glen Beck is moron...
('not sure' and 'positively' respectively)
-phil
Joined: Feb 2008
Hey, Phil!
Phil,
We differ somewhat in some of our beliefs, but I do respect and like you so much. You are so sensible, and you're such an example for others with the quiet way you've gone about continuing to live with cancer for so long.
Glad you posted again!
*hugs*
Gail
Joined: May 2005
Hi Gail
Sorry about that crack about Glen Beck
;-)
Thank you Gail, I like and respect you too. We all don't agree on everything but that's life!
-p
Joined: Feb 2008
No prob!
It's okay about Glen Beck. He's kind of a tool. *L*
*Hugs*
Gail
Joined: May 2005
Sorry for this omission...
I should have added that MANY people have been declared NED and stay that way. Also, many people do the 12 rounds of chemo and they are done with it. I didn't mean to mislead anyone by my comments. Unfortunately, the way I chose to show a post that offered little in the way of truly helpful information (IMO) was to do something I am not in favor of doing.
I doubt that anyone who has been a member of this site for a number of years can deny that what I stated was false, it just doesn't benefit people who are currently looking to hear those "Three Little Words".
I do hope that we all can reach NED and that it sticks. Cancer is a crummy disease that is not easy to beat but it is beatable. Also, one can be undergoing chemo/treatment, or other types of treatment, and be living with cancer for the long-term and have a happy, productive, and relatively "normal" life. There is no right or wrong way to approach your treatment. It's all about getting information and making your choice, having the best medical team (if you decide to go that route), support from family and friends, a sense of humor or a good attitude, and a little good luck thrown in.
I apologize if my post offended anyone, it certainly was not my intention at all.
-phil
Joined: Feb 2010
Holy crap
Holy crap! This is the post! I just skimmed it to get the gist of it because it was so long, as well as many of the responses. My tiny little brain can not read to many words in a row (unless it is a book series, one of the classics or all the Zit's comics in my bathroom). Sorry Pete, nothing against you, but when posts get too long my brain does do something of a shutdown and I end up missing stuff. Wow, guys and gals, I hope we are over it all. This is just one post after all and well, life goes on. I have this sudden worry that something I am saying might upset someone, so I will make it brief.
I love coming here to learn more about cancer, see how everyone is doing an sometimes even venting.
Have a great day!
Joined: Jan 2007
Rick -
Hey....
Re:
"I have this sudden worry that something I am saying might upset someone, so I will make it brief."
No, no, and no. We're here to say what we want to say!
The one thing I was afraid to see happen here, was the
possibility that someone is going to take a position as
you lightheartedly suggested!
We never want to cause discomfort to anyone, but hell,
it's impossible to satisfy everyone! (ask my wife?)
Seriously, we talk about whatever we talk about, and
we let the reader sort it out.
There's really no such thing as a "newbie" in a web forum.
If one knows how to join a forum, they certainly know
well what goes on in a forum. You "roll with the punches",
and disregard what you feel should be disregarded.
A diagnosis of Cancer sets off a series of emotions, and
anger is a major one of those! I excuse a friend for being
a jerk, knowing that his diagnosis is new to him, and what
he's going through. (BTDT)
Say what's to be said. If it's really offending, Greta
will take care of it.
She knows people that make cement boots, and offending
people take a "ride" in the middle of the night!
Stay well and sane, better days a'comin'!
John
Joined: Apr 2011
I won't comment on anyone
I won't comment on anyone elses post. I think we all need something different at different times. Pete, your post was absolutely perfectly timed for me as my husband gets ready for liver surgery. It was information I had not heard before and is an area I plan to research further. I would not have known to do this if I hadn't read your post. For me,(I know I am looking at it differently as a support person) information and knowledge makes me feel like I have some power over this beast.
Joined: Nov 2010
you have got power over the beast
i hope your husbands op goes well.
pete
Joined: Oct 2010
John?
Hey John...what is BTDT? I think I amy have it.
Gail
Joined: Oct 2010
newbies need candid information
Perhaps Pete needed some polish on his introduction, but I for one am glad to see candid discussions on specific chemo.
I am tired of going to see oncologists who try to cram the maximum (price) chemo down our throats, effectively ignore harsh sequalae like Pete brings up, and ignore less damaging technical options with much better looking test results.
One of the most sobering things is to be slapped with the reality that you've been misled about side effects and benefits. Best to get it up front, while you still have more choices. Even this past month, we've spent a lot of time being led down primrose paths of "standard medicine" to less promising treatments that promised more misery, and much more likely failure.
We need our eyes taped wide open. We have to help each other see the pitfalls and the opportunities.
Joined: Nov 2010
english was my worst subject at school
luckily my cut and paste skills were developed during my computer science degree.
i appreciate your comments.
so well said. i hope you get to the bottom, ask your onc about adomet ?
it would be interesting their answer.
hugs,
pete
Joined: Jan 2007
Hey Pete -
Re:
"english was my worst subject at school"
Mine too, but at least you have a good excuse!
(Don't worry about it, for $%*&^% out loud. You're doing just fine!)
My second language goes like this:
Ifelay isway ootay ortshay otay arecay aboutway operpray anguagelay.
John
Joined: Jun 2010
Но если ваш
Но если ваш язык не является правильным, не следует ожидать, чтобы быть понятым.
Joined: Oct 2010
Now you boys are starting to
Now you boys are starting to play nice . lol. Although I have no idea what Blake said :)
Love and hugs always dear brothers, Gail
Joined: Jan 2007
Gail -
"BTDT" = Been There; Done That
Here, this might come in handy during dry spells: Acronyms
If you copy and paste those funny letters into Google Translate
It will let you read it, and translate what you type back into it.
Посмотрите, как легко это?
Enjoy good health !
John
Joined: Jun 2010
Συγνώμη, είναι
Συγνώμη, είναι όλα τα ελληνικά μου.
Joined: Jun 2010
Això podria ser divertit.
Això podria ser divertit. Hauríem de fer més sovint. (Per Pepe)
Joined: Oct 2010
Blake
It looks beautiful in writing :) I'm wondering if it says "have a wonderful sunday" or " I just took the puppy out for a tinkle" ....lol....kidding and playing with ya :) :):)
Love and hugs, Gail
Joined: Oct 2010
John.....hey
Thanks John :) and yes I do have that! BTDT.... lol....although I thought it meant something else for some reason (having to do with anger issues, yes I have that!? Weird huh?).
Now how in the world do I translate the 4th paragraph? because I'm clueless! lol
Love and hugs to ya, Gail
Joined: Jan 2007
Gail -
That Google translator gives you a choice to select a language,
or have it auto-detect the language you're inputting. Select the
"auto-detect" and away you go! (It doesn't seem to decipher
West Virginian, though)
And the "igpay atinlay" translator is *here*, fwiw.
(I just scrolled up and holy momma, look what I started)
Try to stay sane (and healthy),
John
Joined: Oct 2010
Yes you did and thank you
Yes but how nice it is!...light hearted and all :) Now go look at Phils ROKU. It sounds like something I need besides a new TV and Blueray.
Love and hugs
Joined: Feb 2010
Mean something else?
Like Butt Torn Dried Turds? Those are the only two I can easily come up with and this one has so few uses, I can't see how it would catch on.
I tried to get one to take hold. I got tired of lol, etc, so I came up with pmp = peed my pants. I tried for ever to get people to start using it.
Joined: Oct 2010
Ha Rick
Funny :) lol....I mean pmp ...ha
Love and hugs, Gail
Joined: May 2005
アーメンしている!
少年はブレイクするには、その権利を持っている
Joined: Oct 2010
Oh my gosh....how pretty
Oh my gosh....how pretty :)
lol, Gail
Joined: Jun 2010
Pales sé
i láthair do avatar!
Joined: Jun 2010
شكرا لك اخي!
شكرا لك اخي! متعة مثل هذا من الصعب أن تأتي بها!
Joined: Jan 2009
Pete
Pete,
Thank you for this post. It "poked" me to remind Dick to start taking Milk Thistle again. Dr. Lenz recommended it for him and he had gotten sick of taking so many things so he stopped for awhile. Well today, he is back on it. Thanks.
Aloha,
Kathleen
Joined: Nov 2010
some good comes out of a clumsy post
kathleen,
sorry but what chemos dick on ?
is milk thistle each day,
what dose was recommended ?
i had chemo days offmilk thistle
just curious. its great your onc recommends it, most say no.
ask about samE. i think it maybe better than milk thistle, maybe complimentary.
no idea, but would love to get a good answer.
he must be a great onc.
its good for both of you,
hugs,
pete
ps
if you see scoutys liver post with sugar igr discussion, i think milk thistle helps with insulin levels see below. many benefits.
Can Milk Thistle Help People With Diabetes?
Medical research does suggest that milk thistle, combined with traditional treatment, can improve diabetes. Studies have shown a decrease in blood sugar levels and an improvement in cholesterol in people with type 2 diabetes.
Researchers also have found that milk thistle improved insulin resistance, a key characteristic of type 2 diabetes.
Diabetes is a serious condition. Talk to your doctor before taking any supplements as they may interfere with your medication.
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