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FLLoriK

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Reply with quote  #1 
Dear Edge,
I was told my liver is cirrhotic (?). I take that as completely filled with cancer. Am I right?
My abdomin is filled with fluid and I have had one paracentsis already. Probably headed for another one very soon. This sounds very grim to me.
I just started Abraxane/Flasodx/continuing on Zometa. I'm pretty level headed and when the onc said the Abraxane has a 30% chance of working and I have about a year of life left, I was surprised. 
What do you think about all this?
SoCalLisa

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Reply with quote  #2 
Wow Lori that is alot to deal with..

I have cirrhosis in my liver as a result of the toxic methotrexate  in CMF chemo and other treatments but that does not mean cancer...it means the liver is full of scarring..



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Reply with quote  #3 
Dear Lori,
I am so very sorry you have had this turn.
Oh my friend... this is so unfair.
Socal is right, cirrosis doesn't mean cancer, it means scarring.
I know that parcentisis is not an easy procedure.
My heart goes out to you.
Please tell me what we can do for you.
How can I help you?
You have a whole family here who loves you very much.
love
g




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Calico

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Reply with quote  #4 
Lori,
prayers and hugs coming your way.
I thought cirrhosis is scarring also.....maybe Constantine has some words of wisdom....good supplements (how about milk thistle?) and a strict diet (not sure if it was low protein to make it work less hard....) as well as chemo.

I have read of liver donors that give a partial of their healthy liver (vs. complete liver donor from a dying person) I thought it is amazing what's out there.
Nonetheless scary to you.

Holding your hand and keeping you close!!!

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FLLoriK

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Reply with quote  #5 
I have had liver mets for a few years now. It was explained that when fluids (protein from cancer) starts building up in the stomach area, it's not good.
I will be taking my own morphine tomorrow for the second paracentsis.


PS they said no transplants as I have mets in other places as well as the liver.
edge

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Reply with quote  #6 

Lori:

 

Clarification re Liver Status

The fluid buildup for which you've had paracentesis (the procedure to remove peritoneal fluid from the abdomen) is called ascites. Ascites may be caused by infection, inflammation, an injury, or by cirrhosis, or cancer.  From your description, it would appear that the ascites that is being remediated by the paracentesis procedure was itself induced by a cirrhotic condition (in which widespread nodules in the liver are combined with fibrosis which interferes with the blood flow through the liver).  However the key question is:

 

  1. whether the cirrhosis itself is induced by non-malignant conditions, like viral hepatitis; acute bile duct obstruction; an inherited metabolic disease like hemochomatosis; or congestive heart disease (CHD), among others,
    OR
  2. whether the cirrhosis is secondary to the liver (hepatic) metastasis.

 

That needs to be clarified with your oncologist.

 

Where You've Been

As to your oncotherapy, you're currently on nab-paclitaxel (Abraxane) + fulvestrant (Faslodex). As I recollect and from my notes, after ACT primary systemic therapy you have taken:

 

  1. the chemotherapies gemcitabine (Gemzar), capecitabine (Xeloda), ixabepilone (Ixempra), and, most recently, Doxil,
  2. the endocrine therapies tamoxifen and anastrozole (Arimidex),
  3. biological therapy in the form of bevacizumab (Avastin), along with
  4. the adjunct bone agent zoledronic acid (Zometa). 

 

Some Suggested Optimizations

Now, as you may know from my postings and from our own correspondence, I am not a fan of  monotherapy in advanced disease, and as to non-endocrine therapies, I favor at least doublet and triplet chemotherapy regimens, with or without biological therapy.

 

So in this connection here are some suggestions for optimizing your current (Abraxane + Faslodex) regimen:

 

  1. Although nab-paclitaxel (Abraxane) is an eminently rational choice at this juncture, it is nonetheless single agent chemotherapy, and I would suggest doublet chemotherapy, and one option would be Abraxane + vinorelbine (Navelbine).
  2. As to your endocrine therapy, it consists now of the singlet regimen of fulvestrant (Faslodex), an excellent agent but I again would favor dual endocrine therapy, and the option I would suggest is Faslodex + letrozole (Femara), a highly active doublet; in addition, if you have not had an oophorectomy, then consideration should be given to at least adding ovarian ablation via leuprolide (Lupron) or goserelin (Zoladex).
  3. I would allow a  14 week trial (as per my article on this topic) of the Faslodex + Femara (with or without ovarian ablation, and should there be continued progression at that time, I would suggest switching to Megace or low-dose (LD)-estradiol (6mg), the latter seeming paradoxical but in fact know to often be an extraordinarily effective endocrine strategy (fighting estrogen with estrogen), and one that would warm the heart of the great Charles Vogel (see my suggestion re Vogel below), Joyce O'Shaughnessy and other ultra-innovative oncology leaders.

 

Thus one chemoendocrine regimen based on these suggestions would be:

Abraxane + Navelbine + Faslodex + Letrozole
(with Zometa as an adjunct agent)

 

Additional Options and Suggestions

 

  1. Given both your liver disease (cirrhosis) and metastasis, I would suggest immediately adding SAM-e, our most powerful hepatoprotectant (liver protectant), which has achieved impressive results in treating liver disease, both experimentally and clinically, including cirrhotic disease. (I don't currently advise silymarin (Milk Thistle) as there is some concern and report as to potential estrogenic activity).
  2. I will repeat my very strong suggestion made to you some while ago, to get a consult with Charles Vogel who is with the Cancer Research Network (CRN) and Aptium Oncology at the Lynn Regional Cancer Center West Campus in Boca Raton. He is a gifted clinical investigator and a renown breast cancer expert, and I and others consider him one of the foremost authorities in the world on endocrine (hormonal) therapy including for metastatic disease, so he would be a particularly fine choice for you as a second consult (and he is a rare humane and compassionate oncologist).
    His contact information is:


Charles Vogel

Aptium Oncology

Lynn Regional Cancer Center West Campus

Phone: 561-883-7600
(General number at Aptium: 323-966-3400)

Email: drcvogel@aol.com

 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

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Reply with quote  #7 
I don't think that is fair.
I know a man who was an alcoholic who got a liver transplant.
He did not stop drinking and the doctors knew it, and that is one of the criteria to get a new liver for an alcohol related liver failure.
What they did was give him the liver of an older person that would not normally be transplanted. The liver worked wonderfully.
It seems to me that if an older person's liver is not going to be going for a regular transplant, a cancer patient should get the benefit of it as well as folks who can't stop drinking.
My love to you Lori,
g


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CommandoBarbie

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Reply with quote  #8 
Lori - I just saw your post. I just wanted to come in and give you a hug. I'm so sorry that you are going thru this. (((Lori)))

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chemoabi

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Reply with quote  #9 
Lori:  I have been in my own little world and I am so sorry you are having to go through this.  Just wanted to send some hugs your way.  I have seen patients with cirrhosis develop ascites and I have seen patients ascites respond to treatment.  Just out of curiosity are you getting your blood drawn.  I'm wondering what your Albumin is because low albumin can contribute to the collection of fluid.  Anyways good luck with the procedure tomorrow, I was also wondering if they can put in a drain like they do with the lung so you don't have to keep going through this.  Worth asking.  Hugs.
 
Edge:  Wow what can I say.  You are incredible.
 
Nicky

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Karen1956

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Reply with quote  #10 
Lori,

I am so sad to hear your latest news.   Do you know your hebrew name?  I can have DH add it to the mishaberah (sp) list at shul. 

Will be thinking of your tomorrow.

I wish there was something that I could do long distance.

(((((((HUGS)))))))
Karen
Calico

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Reply with quote  #11 
[[[Lori]]]
thinking about you

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FLLoriK

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Reply with quote  #12 
Karen, my hebrew name is Leah 'b Moshe v Masha.

Nicky, I asked about my liver enzymes and were told they are normal. I was also told Albmim is not given to cancer patients since the fluid is made of protein. I don't know anymore what to believe.

The first paracentsis was 2.5 liters and yesterdays was 3.0 liters and still leaking!

Now that I am feeling stronger, I will call Charles Vogel's office. My mom lives right near there so that will be convenient.
chemoabi

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Reply with quote  #13 

Lori:  Wow, thats alot of fluid.  You must have been so uncomfortable, I'm hoping you are feeling some relief now.  The Albumin thing makes sense to me - I guess I was thinking about cirrhosis without cancer being involved.  I sure hope that chemo destroys those cancer cells.  Sending big hugs to you.

BTW thats a pretty name you have there. 

Nicky


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FLLoriK

Angel
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Reply with quote  #14 

Thank you Nicky.....you always put a smile on my face!!!!!

chemoabi

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Reply with quote  #15 
Hey Lori, checking in on you and wondering how you are doing?  I have been thinking about you that past couple of days - can't get you out of my mind.   that.  Here ya go.



Love ya

Nicky


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FLLoriK

Angel
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Reply with quote  #16 

okay...i need to getmore computer suave!

Calico

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Reply with quote  #17 
[[[Lori]]]
thinking of you!!! and keeping you close in prayers!

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nosurrender

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Reply with quote  #18 
Hi Lori!
Just popping in to see how you are feeling...
I hope better, hon!
Love
g


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fluffy

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Reply with quote  #19 
Lori..So sorry to hear all of this. I don't come on here too often..
wow..Edge really gave you some wonderful information. I wish you well.
I'll add your name to our misheberach list as well...
 

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