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Old 11-27-2010, 09:36 PM   #1
Lani
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bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Urol Int. 2010 Nov 27. [Epub ahead of print]
Observation of de Novo Bladder Dysfunction under Treatment with Her2-neu Antibodies.
Hinkel A, Strumberg D, Noldus J, Pannek J.

Department of Urology, Marienhospital, Ruhr-Universität Bochum, Bochum, Germany.
Abstract
Purpose: We diagnosed de novo bladder dysfunction in several breast cancer patients under cancer-specific therapy with trastuzumab. The goal of this retrospective analysis was to investigate whether bladder dysfunction is common in a larger population of breast cancer patients receiving trastuzumab therapy. Patients and Methods: We identified 93 patients who received at least two doses of trastuzumab at our institution in the years 2003-2006. 57 of those patients were still alive at the time of this analysis. We mailed a validated global questionnaire for the assessment of incontinence (King's Health Questionnaire, KHQ) to them, additionally asking for bladder dysfunction observed under trastuzumab therapy. Results: 43 (75%) of the patients returned the questionnaire, 11 (25%) of them reporting severe de novo bladder dysfunction under therapy. Significant differences between symptomatic and asymptomatic patients were detected in all KHQ subscales. Previous conditions and surgeries as well as medications, especially hormonal therapy, were excluded as underlying causes. However, there were more patients under taxane-based chemotherapy in the symptomatic group. Conclusions: The epidermal growth factor receptor is involved in the cellular response to mechanical stretch in the urinary bladder. Based on our findings, we hypothesize that interfering with this pathway may well be the cause of symptomatic bladder dysfunction in patients under trastuzumab medication. A prospective study is required to further elucidate this hypothesis.

Copyright © 2010 S. Karger AG, Basel.
PMID: 21109724
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Old 11-27-2010, 10:30 PM   #2
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Interesting...although no problems here that I know of.

Chelee
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Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 11-28-2010, 08:04 AM   #3
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

My sis told me that during her treatment, she barely made it to the powder room upon many occasions. She said that there was little time between the urge to urinate and the need to "be parked". Interesting study....she'll be glad to know there may have been a real reason!
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Old 11-28-2010, 09:08 AM   #4
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

I definately have very little warning when it is time. I run to the restroom. I had alot of Herceptin!!! Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 11-28-2010, 09:38 AM   #5
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

I definitely have this side effect and it is helpful to now know which drug is causing it. I have been on Herceptin almost six years. I wonder if the researchers looked at any of the current incontinence drugs on the market to see if they would help us.
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Old 11-28-2010, 02:56 PM   #6
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Wink Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Interesting. It seems that most drugs can cause any number of side effects, and the more people that take a given drug the more SEs will be reported.

My over 7-year experience on the drug gave me no such problem. Only that I have to use the potty once in the very wee hours some nights, but not all the time. This can be caused by mere aging or increasing fluid intake.

Now that I have been off Herceptin for 2 years, I really notice no change in urination habits.
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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
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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 11-28-2010, 03:53 PM   #7
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Exclamation Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Thanks for posting this lani it explains a lot!!
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Old 11-28-2010, 08:37 PM   #8
caya
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

I was always prone to UTIs, chemo and Herceptin added to this problem. I am on a daily antibiotic to stave off them off, not fun. This would explain alot, Lani. Chalk up another wonderful s/e...

all the best
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Old 11-29-2010, 07:38 AM   #9
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Quote:
The epidermal growth factor receptor is involved in the cellular response to mechanical stretch in the urinary bladder.
Hmm, that is interesting to me. I did not experience urinary problems while on Herceptin (or since my tx), but the bladder is not the only organ that "stretches". I had (and still have) an issue with vaginal stretching, despite hormonal tx for Vaginal Atrophy that my gyne tells me was 100% successful, based on the re-eptihelialization of the cells. Wonder if the year of Herceptin is the culprit in this?

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Old 11-29-2010, 08:53 AM   #10
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Nancy L, Good morning! I read that you have been on Herceptin for nearly 6 years. Are you having any of the usual side effects, ie: red, dry eyes, hand & foot neuropathy, red face along with hot flashes,fatigue, chemo fog. I was on Herceptin for 5 years and I am off it for 3 years. I still have all of the above except for red eyes. I was just curious. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 11-30-2010, 03:39 PM   #11
Nancy L
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Mary L---Congrats on being NED for 3 yrs!

I must admit, it is often difficult for me to determine which drug caused a problem. For example, I didn't find out until four years out that Taxotere was the reason I didn't get my hair back (1-3% of women experience this nasty surprise). The four years I was on Herceptin only, I experienced fatigue, red tearing eyes, peeling nails, incontinence and a constant runny nose. I have been on Herceptin plus Tykerb for 21 months. Most troubling new side effects are chronic diarrhea and rash.

I also have a severe case of vaginal atrophy and the docs won't give me anything to help even though I am estrogen receptor negative. Glad to finally know Herceptin may be the culprit. I always figured is was the AC. My experience has been that the oncology community doesn't really want to talk about quality of life issues. The attitude here in California is as long as you are still alive and a side effect doesn't keep you from getting treated, you should be grateful.

Managing the side effects of BC is a challenge and sometimes I get depressed. The list of things I have had to give up (including sex and my hair) because of this disease is long. But then again, if I hadn't taken Herceptin I wouldn't be around to even think about it.
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Old 12-01-2010, 08:37 AM   #12
Karen Wheel
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Wow --- interesting as I had so many problems with my bladder when I was on Herceptin... it was like I was almost scared I had bladder cancer (as it was just not wanting to give me even a few weeks rest from symptoms). Now that I am 6 months out from Herceptin it l seems to be almost gone. I still take a cranberry supplement daily and drink lots of water to try to keep it that way!

Interesting... Now I know I am not crazy! :-) Thank you!

Karen
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Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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Old 03-02-2011, 10:50 AM   #13
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

I'm currently on herceptin & Tykerb and just recently noticed a problem with incontinence so I came here to see if I was crazy or if this was a known symptom. Surprise, surprise - glad its not just me being lazy. LOL
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6/14/2010 - Self discovered Lump; Age 39
6/24/2010 - Biopsy results confirm breast cancer
Right breast, invasive ductal adenocarcinoma
HER2neu positive, BRAC I & II negative
7/8/2010 - Lumpectomy right breast, sentinel lymph node biopsy, & port-a-cath installed on left
Stage II, Size 3.2cm, Clear Nodes, Clear Margins
8/19/2010 - Chemo begins - Taxotere, Carboplatin, Herceptin & Tykerb all simulanteously; ALTTO trial arm 4
9/9/2010 - Chemo dose #2
9/30/2010 - Chemo dose#3
10/21/2010 - Chemo dose#4
11/11/2010 - Chemo dose#5
12/02/1010 - Chemo dose #6 - WooHoo, it is complete!
12/14/2010 - Simulation & Planning session for radiation
02/18/2011 - Completed radiation treatment (33 rounds)
08/04/2011 - Completed Herceptin & Tykerb
09/30/2013 - ultrasound guided biopsy (following annual MRI)
10/1/2013 - new cancer in left breast. 6mm discovered via MRI
10/28/2013 - bilateral mastectomy - no reconstruction
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Old 03-02-2011, 09:51 PM   #14
SoCalGal
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Definite differences with frequency and urgency. Definite challenges with stretchiness and s to the e to the x. Still trying to remedy whatever I can whenever I can to increase quality of life.
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 04-26-2011, 02:37 PM   #15
msleslie
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

I'm beginning to feel like I need to wear a diaper. I just had my Herceptin treatment last Thursday and right now have frequent urgent need to urinate - I'm literally running to the bathroom. After about a week it will get a little better but returns with each herceptin dose.
__________________
6/14/2010 - Self discovered Lump; Age 39
6/24/2010 - Biopsy results confirm breast cancer
Right breast, invasive ductal adenocarcinoma
HER2neu positive, BRAC I & II negative
7/8/2010 - Lumpectomy right breast, sentinel lymph node biopsy, & port-a-cath installed on left
Stage II, Size 3.2cm, Clear Nodes, Clear Margins
8/19/2010 - Chemo begins - Taxotere, Carboplatin, Herceptin & Tykerb all simulanteously; ALTTO trial arm 4
9/9/2010 - Chemo dose #2
9/30/2010 - Chemo dose#3
10/21/2010 - Chemo dose#4
11/11/2010 - Chemo dose#5
12/02/1010 - Chemo dose #6 - WooHoo, it is complete!
12/14/2010 - Simulation & Planning session for radiation
02/18/2011 - Completed radiation treatment (33 rounds)
08/04/2011 - Completed Herceptin & Tykerb
09/30/2013 - ultrasound guided biopsy (following annual MRI)
10/1/2013 - new cancer in left breast. 6mm discovered via MRI
10/28/2013 - bilateral mastectomy - no reconstruction
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Old 04-27-2011, 09:22 AM   #16
Karen Wheel
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Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

Another good thing I found that worked (or at least helped!) when I was on Herceptin and actually even now almost a year out from Herceptin I still use this! But search at your local healthfood - Vitamin store (or search to order on-line) for a product called D-Mannose. I really had the best success with the powdered version of this from a company named Pure Encapsulations. It is a super good grade and it really does help a LOT! But it is a natural sugar that somehow helps the bladder. They use it for bladder infections as it helps attract the bacteria to the "sugar" and then you pee the bacteria out (in theory) but even though I wasn't actually having a bladder infection (just felt like it!) it did help with the bladder overall - so I am not sure what other healing properties it might have for the bladder in general. All I know is it was all that kept me sane when I was on the Herceptin.

Give it a try! Also .... I take (and took during treatment) a very high dose of Vitamin C which I believe that Vitamin C cures everything. It is a super immune booster and I think this also would really help you! I started with 2,000 - 3,000 mg (2-3 grams) a day and upped that slowly (as you have to build up over a week or two to higher doses or you end up with the runs!) but I now take 7 grams (7,000 mg) to 10,000 a day. I use a powdered concentrate that is like 5,000 mg for a smalll teaspoon full of powder and I put it in my fresh juice daily.

And.... I have not been sick since I started the vitamin C. Not a cold, a sore throat, cough, flu ... NOTHING ... And I am still NED too! I accredit this to the Vitamin C and my other supplements, but as strange as it sounds, I am more healthy (lots!) now than I was before I got cancer!

There is a bright side!
:-)
For more info please feel free to email me directly - "wheelistic@yahoo.com"
Karen
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Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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Old 05-04-2011, 01:07 PM   #17
v-ness
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Smile Re: bladder dysfunction may be associated with herceptin use--anyone with symptoms?

fascinating.

since i've always been a big water drinker, i've always had to go to the bathroom, but i noticed this past year that i could no longer make it through the night. and of course that was the year i was on herceptin.

i'd taken effexor for hot flashes but it ceased to work so i started my own quest for anything else that would help. i was having about 30-40 bad ones a day. i discovered oxybutynin which happens to be for exactly what you're talking about. it's original design is to help with incontinence and because it is drying it staves off the hot flashes. i am down to just a couple a day now and usually only after coffee or when it is warm. i only take 2 pills a day, though i was prescribed 3. i certainly have to pee a LOT less, which is a blessing. dry mouth comes with it, but eventually fades. the funny thing is that with dry mouth you drink more which means i still get up once a night. but once a night is a small price to pay for salvation from hot flashes.

btw, oxybutynin is a very safe drug.

valerie
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8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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