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Old 08-05-2006, 12:42 PM   #1
Sherry in WV
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Cool update on tykerb

Well, I met with the Head of Breast Ca treatment and research in Pittsburgh.
Right now, my bili is too high ( 8.2) less is < than 1.0. However he having sono and mri of liver done, hoping that bile duct is blocked and it's not my liver completely eaten with tumors. I will also have repeat labs done again and see him the end of the month. Fingers are crossed and I am PRAYING, PRAYING, PRAYING. Thanks for the swupport when I was down. Oh yea, he put me on fentynal patches, 25 mg. My appetite seeems a little better and losing weight a little slower.
Love and Thanks to all of you
sherry
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Old 08-05-2006, 01:39 PM   #2
sassy
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Sherry,

Glad your appetite is better and hoping that you get good results on liver tests. Keeping you in my prayers.

Sassy
________
RoxanaCutie

Last edited by sassy; 08-22-2011 at 08:51 AM..
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Old 08-05-2006, 08:06 PM   #3
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I'm praying for you and that your tests go well. And SO glad to hear you are doing better after that scarey encounter with your doc. Thanks for taking the time to post!
Love,
Dilly
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Old 08-05-2006, 08:17 PM   #4
madubois63
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very glad to hear your appetite is better!!!! I am praying for you that things go well!!!
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Old 08-05-2006, 11:36 PM   #5
Kim in CA
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Sherry,

Hoping that things improve for you soon. Please know I'm keeping you in my prayers.

Kim in CA
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Old 08-06-2006, 08:53 AM   #6
IRENE FROM TAMPA
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Praying Right Along With You Sherry

and wishing you a good outcome.

Stay strong my dear.
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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Old 08-06-2006, 12:32 PM   #7
chrisy
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In my prayers also...

with fingers and toes crossed. Good news that your weight loss has slowed and you have some appetite to get that stabilized. Hoping with you that the liver function improves soon. and that you get some more good news soon.
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 08-06-2006, 03:07 PM   #8
VaMoonRise
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Praying Diligently

Sherry,

I am so glad to hear that your apetite is a little better and that the weight loss has slowed down. I will continue to pray diligently that all of your tests come back with good news and that your health continues to improve.

Sending lots of warm thoughts, well wishes, prayers, love and hugs your way,

Nicola
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Old 08-06-2006, 03:59 PM   #9
Mary Anne in TX
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Thumbs up

Hi Sherry!

So good to hear that your weight is not dropping so fast and that you have great hope for the end of the month tests results! I'm hoping and praying along with you and think of you daily. Happy eating!
Mary Anne
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Old 08-06-2006, 04:27 PM   #10
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I am also praying for you--- we all have to send much support to one another
Good luck
Carol
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Old 08-07-2006, 11:20 AM   #11
MJo
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I am so glad to hear that your appetite is better. I am also keeping my fingers crossed about the possible bile duct condition. You never know. This time next year you could be bungee jumping at the New River Bridge. MJO
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Old 08-07-2006, 11:27 AM   #12
fcrcm
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fcrcm

Dear Sherry,
My prayer for you is specific (I'm picky!) May you have a blocked bile duct, because if you do, as I did last year, and they put a stent in it so your liver and pancreas can function properly again, you will feel like a whole new person and enjoy a good break from all the nastiness for a while. May that be so.
I know it is hard to hope for something that may not happen, so I'll do the hoping while you just go on taking care of yourself day-by-day.
We are all with you,
fcrcm
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Old 08-07-2006, 12:24 PM   #13
StephN
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Thumbs up TPN - nutritional boost

Dear Sherry -
I know you say your weight loss is slowed, but you may have some critical problems with absorbing food and liquids on the horizon. Sincerely hope not,but if so, here is another approach to long term weight problems.
I have copied and pasted an article, but you can search the web for TPN and find out more.
I learned about this from a friend surviving ovarian cancer, but has progressed. She does this at home. All the best!

are at obvious risk of malnutrition and dehydration. Without nutritional support and hydration, such individuals will become increasingly weakened. As their immune system function is reduced, they may die from infections before death can occur from malnutrition or dehydration.


Malnutrition is caused by inadequate intake of calories, protein, carbohydrates, fats, vitamins, minerals, trace elements, or any combination. The effects of malnutrition depend on its severity, duration, and which specific nutrients are lacking. The effects include: weight loss, listlessness, and depression; decreased ability to resist infection, to recover from illness, and to withstand surgery or other treatments; impaired wound healing; decreased cardiac and respiratory muscular strength, confusion, coma, and eventual death.

Dehydration is the loss of body water in excess of intake. It is caused by decreasing fluid intake or inability to conserve fluids as a result, for example, of renal disease or severe diarrhea. Dehydration results in dry mucous membranes; decreased sweat, saliva, and tears; muscle weakness, rigidity, or tremors; confusion, hallucinations, and delirium; abnormal respiration; coma; and eventual death.

Elderly people become more susceptible to malnutrition when they become critically ill or experience physical, psychological, or social factors. The social factors affect their eating habits, i.e., poor dental status, decreased mobility, social isolation, confusion, poverty, or depression. Many are too weak or unable to feed themselves and require hand feeding. Hand feeding is time consuming. It is claimed that some hospitals and nursing homes use tube feeding because sufficient staff time cannot be allocated to hand feeding.

Some patients cannot be hand fed because they have difficulty swallowing--a condition sometimes associated with stroke and other neurological disorders--and may choke while being fed. Others, refuse to open their mouths, spit out food, or take in food and fluids so slowly that they cannot be hand fed an adequate diet on a long-term basis, even by a willing and devoted caregiver.

Nutritional support and hydration -- refers to artificial methods of providing nourishment and fluids. The two modes of delivery are:
  1. Enteral or tube feeding, in which nutritional formulas are delivered via a tube into the digestive tract, and
  2. Parenteral is primarily intravenous feeding in which nourishment is delivered via catheter into the blood stream. Total parenteral nutrition (TPN) is an intravenous procedure that supplies sufficient nutrients to maintain a person's weight indefinitely.
Tube feeding and TPN are used primarily for people who are unable to take sufficient amounts of food and fluids by mouth or who are unable to digest and absorb them adequately. In general, tube feeding is used when the patient's gastrointestinal tract is capable of digesting and absorbing food normally. Intravenous techniques are used when the gastrointestinal tract is blocked or when disease interferes with digestion and absorption of foods and fluids.


Tube Feeding Techniques
Feeding tubes are placed through the patient's nose or a surgical opening into the gastrointestinal tract and a "formula" is administered in a single dose using a large syringe, by a gravity drip method, or by feeding pumps. Most formulas are bought premixed, although blenderized table food is sometimes used. Premixed formulas vary from those with standard ingredients to those with defined chemical composition tailored to a specific metabolic disorder. Although no formulas have been developed specifically for elderly people, special formulas are given for patients with kidney, liver or respiratory diseases.

Rapid infusion of enteral formulas into the gastrointestinal tract can cause regurgitation, aspiration, vomiting, or diarrhea. Conversely, very slow infusion can result in inadequate nutrition and hydration.

The patient's experience of tube feeding varies depending on whether conscious, unconscious, or confused. Tubes can cause irritation of the nose and throat and difficulty swallowing. For some, insertion of the tube can be frightening, and cause gaging. Others, learn to insert and remove the tubes themselves.

Intravenous Feeding Techniques
The most commonly used intravenous feeding techniques are:
  1. Total parenteral nutrition (TPN), in which a formula is infused into a vein--usually a large, central vein in the patient's chest; and
  2. The infusion in which water, saline or glucose solutions, and medications into a small, peripheral vein--usually in the arm.
TPN formulas are concentrated and can cause inflammation, occlusion, or clotting in small veins with low blood flow. In high-flow, central veins, the TPN formula is rapidly diluted. However, a constant and accurate infusion rate is critical. TPN formulas provide an ideal growth medium for certain organisms and TPN catheters are often left in place for a prolonged period increasing the risk of infections.


Nutritional support and hydration are the most controversial of life-sustaining technologies for people who are unable to swallow, digest, or absorb adequate amounts of food and fluid by mouth. Giving food and water is fundamental aspect of caring for another person. Failure to provide food and water--even when it requires tube or intravenous procedures--is deeply troubling for many people.

The different views about withholding or withdrawing nutritional support and hydration remains a difficult dilemma with important clinical, legal, ethical, financial, and political aspects.
  • Is withdrawing nutritional support and hydration from a terminally ill or severely debilitated person killing them or merely allowing them to die?
  • Is the suffering caused by malnutrition, starvation, and dehyration acceptable to the patient?
  • Is the suffering associated with the aspects of tube or intravenous feeding procedures acceptable?
  • Since the procedures are covered by Medicare and Medicaid for many patients, is the increased use proper use of limited public funds?
Then, the difficulty of determining which patients are terminally ill adds to this life or death decision.


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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-08-2006, 07:46 PM   #14
mamacze
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Dear Angel girl,
I am doing cartwheels at the thought of you gaining weight and beating back the jaundice. As you begin to feel better, keep educating yourself and be assertive on your own behalf. You received great advise from your sisters on this site (and brothers, forgive me al !); perhaps you can print it so it is fresh on your mind when you meet with your onc next time.
You have grand babies to tend to, jump on this tiger and take control; rest in the arms of our prayers for you....Love Kim from CT
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