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Old 09-08-2006, 01:28 PM   #1
Sandy H
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A quiet weekend from Tykerb!

Well, the mild diarrhea went into severe diarrhea from the Xeloda/Tykerb. I called oncology and after a few hours of looking into the protocal I was told to go on a clear liquid diet and take imodium every 4 hours. Stop the Xeloda as they seem to think its that. When I am diarrhea free for 12 hours I can advance to the brat diet of rice, bananas, applesauce and toast. I have lost my appetite no desire for food-I know I can stand to loose a few pounds but not this way. These are two side effects of Tykerb. I am having a problem sleeping, another side effect,so that makes me tired. The nurse will call me on Monday to see how I am doing. If this gets better or stops then we will know its the Xeloda and if not then its the Tykerb. I told her I don't remember having diarrhea when I took the Xeloda before but the nurse said it maybe, too much with the two together. Here we are my chest feels and looks better but the other end feels worse!! Can we ever win here? Another quiet weekend who wants to go anywhere with diarrhea? Will keep my little Yoda company. We are still waiting to hear from the surgeon. hugs, Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 09-08-2006, 01:37 PM   #2
Cathya
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Sandy;

I am so glad you are keeping us informed of your treatments. You are so right....if it's not one thing it's another.....lol. What a bummer....lol. I really shouldn't kid as I know this isn't funny. I hope you enjoy a quiet weekend and this passes....good grief...Sandy that was NOT intentional! Perhaps it's not either drug just a slight flu? Keep well....glad to hear that it's working on your skin mets.

Cathy
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Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 09-08-2006, 04:44 PM   #3
Sandy H
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Thanks Cathy but I am sure its not the flu as it started with in a couple of days after starting this treatment as mild and just getting worse. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 09-08-2006, 04:52 PM   #4
lindaw
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Dear Sandy


I was so pleased and excited to hear about your great reaction to the tykerb for your skin mets. i am sorry the diarrhea has been so severe - I really hope they can keep that under control.

love
lindaw
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Old 09-09-2006, 07:38 AM   #5
pattyz
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Sandy,

I've wondered about this: if Xeloda comes in pills of 500mg and the protocal calls for 3000mg a day (1500mg 2x's da) why could a person not just skip one of the Xeloda pills, or two, a day?

Depending on what your dosage was prior to this, and you did well on it? And wanted to stay on the protocal since you are already responding? GIVEN once you get your bottom half in order, ofcourse! First things first and all that

Truely, I hope you recover quickly, feeling better with each hours passing,
hugsxoxopattyz
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Old 09-09-2006, 08:22 AM   #6
Joy
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sorry to hear

Hi Sandy, I'm so sorry about the side effects. When I started Xeloda I had such severe diarrhea too. I had it for 2 weeks and my onc at the time said he didn't think it was Xeloda! Anyway, it resolved itself, for real! I'm not trying to scare you with the 2 week thing and you are doing things to help it that I didn't do. The point is it got better on its own and I continued the treatment and THAT is what I wish for you!!!
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dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 09-09-2006, 04:14 PM   #7
Steph
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Sandy,


I too am on Tykerb...about a month now. I had severe diarhea but it hit me the second day, I think it only took a couple days ...maybe a week to work itself out. I feel that like with every new drug my body had to get used to it or figure out how to deal with it. All is good now. I was told by my protocol nurse that that is the most common side affect. Another is a rash that resembles acne...had that too. It will work itself out.

Steph
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Old 09-09-2006, 04:17 PM   #8
tousled1
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Sandy,

Sorry that you are experiencing side effects. Maybe that means that the combo is working for you. Hang in there. I've been reading a lot about Tykerb and the reports so far are good.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-09-2006, 10:27 PM   #9
chrisy
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Hi Sandy,
Bummer! After waiting so long and fighting so hard AND getting an immediate response on your skin mets...sorry you have this "extra" excitement! The lengths some people will go to to snuggle in with their puppy all weekend.
Hope you feel better and are able to get back on full protocol soon.
take care
Chris
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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 09-10-2006, 09:11 PM   #10
marymary
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Feel Better Soon

Hi Sandy:

I am sorry to hear about this side effect of Tykerb, I didn't know about that. It sounds difficult. Hope you are feeling better soon.

I am always so happy to read anything new about Yoda, so glad he is bouncing back and still loyally by your side.

Mary
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Old 09-11-2006, 04:45 AM   #11
Shell
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Sandy-


I got occasional diarheara on the xeloda alone, usually controlled with immodum, and for me it got a bit worse once the tykerb was added - i generally have it once in the morning, and then hopefully that's it...

also, i recall that the 1st few days after taking tykerb, the fatigue hit me really hard! but it settled down somewhat and i got back to my usual schedule.

i never lost my appetite with this combo, (darn!), so hopefully once the fatigue passes you'll feel a bit more like eating.

Good luck with things,
Shell
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Old 09-11-2006, 05:24 AM   #12
MJo
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Thank you, ladies, for being the Tykerb pioneers. I'm sorry that you are going through this diarrhea thing, Sandy, and I hope it improves. At least when little Yoda gets his surgery, the veterinary surgeon should have plenty of bathrooms if you need to make a pit stop.
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