Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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08-15-2009, 12:44 AM
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#1
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Herceptin - Bladder and/or sleep changes?
I have read a bunch of old threads but haven't seen anything (yet) on these issues - so want to ask if others have had these issues when on Herceptin?
At first - I was blaming the chemo (took 9 weeks of Navelbine) but I've been off for two months and the side effects are still here.
1) Bladder - it seems messed up - they say no infection, but feels strange all the time and I do drink a lot of water (on veg diet so not drinking ANYTHING bad!) only fresh fruit and veg juice from my juicer --- or water. However, I go every hour or so to the bathroom and feels like I have waited 5 hours --- it is strange! My oncologists have done two separate urine tests and now are sending me to a specialist to do an exam and ultrasound.
2) Sleep. ARGH! I used to sleep like a baby. Now I dream and dream and dream and when I wake up (1-2 times in the night to pee ugh- other problem) but I can remember a mass of strange dreams - like I have done some sort of long rushed vacation, or scavenger hunt in my sleep. In the mornings I wake up and feel exhausted from the nights events (of dreams). THANK GOD - I haven't had hardly any scary dreams - but it is still making me slightly nuts.
Any of you have these symptoms???
Thank you in advance!
Live Long!
Karen
Age – 44 pre- menopausal
No children – no pregnancies
2-09 – Biopsy – Cancer
3-09 – Partial mastectomy Right – 3 nodes taken but not involved
Tumor results: 1.5 cm – Stage 1 - Her-2 +++
Estrogen positive 80% - Progestin 10% - Ki67 postive 30%
4-09 – Started Herceptin (for 1 year every 21 days)
4-09 – 6-09 Chemo – 9 weeks of Navelbine
7-09 - 30 sessions of radiation (almost finished!)
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08-15-2009, 05:55 AM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: Herceptin - Bladder and/or sleep changes?
I do know that I had trouble with sleep. I still have trouble with it because of these darn night sweats. When I got put into chemo pause it really did a number on me and has continued. So much so, I'm considering begging for some HRT.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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09-20-2009, 01:17 PM
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#3
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Herceptin - Bladder and/or sleep changes?
My mom has had sleep disruption and repeat visits to the bathroom with sense of incomplete voiding. Negative for urinary tract infection as well.
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09-21-2009, 09:05 AM
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#4
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Re: Herceptin - Bladder and/or sleep changes?
sleep? what's that? and the bladder problems i've always had.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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09-21-2009, 09:08 AM
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#5
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Herceptin - Bladder and/or sleep changes?
I am having the same problems with using the bathroom.
I do not wake up as often a week and a half after Herceptin infusion.
Amelia
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09-21-2009, 07:02 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Herceptin - Bladder and/or sleep changes?
Karen,
How's your sleep now?
I'm thinking that your sleeping problem (dreams) was related to your bladder problem, which sounded like was related to your fluid intake. I would suggest be sure to empty the bladder and not to drink too much fluid before going to bed.
If things are not improving, I would suggest getting a CT of the brain.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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09-22-2009, 02:39 PM
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#7
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Herceptin - Bladder and/or sleep changes?
Wow - okay - good advise all! I just got back from being on vacation at the sea (my reward for finishing radiation!) but the docs found a bladder infection (slight) and I did antibotics for these last two weeks ... not feeling much better - but need not now ask the docs to do these scans and also test my kidneys after I saw Dianne's thread on kidney numbers declining....
UGH! I'll keep you guys up to date. But I still sleep for "CRAP!" and it is because I wake up every hour or two and never seem to get REM sleep .... so I feel tired all the time, even when I do sleep more than 2-3 hours I dream all kinds of weird stuff ---ugh! I again, wake up exhausted and just thinking - why can't I just sleep --- like the old days!???!?!!!!
Karen
__________________
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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09-22-2009, 02:41 PM
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#8
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Herceptin - Bladder and/or sleep changes?
Jackie - one more thing.... why do you suggest a brain scan with the bladder acting up - or is the non- sleeping issue?
thanks - Karen
__________________
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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09-22-2009, 05:02 PM
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#9
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Herceptin - Bladder and/or sleep changes?
Karen,
I wrote a detailed reply - but it vanished (timed-out) after my husband had interrupted me several times. He's trying to find out where a Bible verse came from (I Corinthians 13:11.)
So here I try again.
I had bladder control problems since I was little. When I became a 'woman', I always had bad cramps, bad pimples, and very underweight. When I was 29, while my health was quite bad, I found a book talking about how many of the 'sleeping problems' are related to painful periods. It stated that most women with the problem had a history of bed wetting in their childhood.
Finally when I was 30, we found out I had had a life-long brain tumor which explained why I quit 'high jump' after 10 grade and why I often had pressure in the back of my head when I did the 'jump shot' playing basketball. It explained why I couldn't stay alert during class and why I did most of my studies lying in bed.
That was 1990. I started to sleep like a baby; I gained weight (18 lbs); my facial skin became smooth; I no longer had athlete foot...
Since then, I've had another brain tumor surgery (Gamma-knife in 2001) and two breast cancer episodes. I experienced the same problems every time - way before my doctors could figure out what's going on because they alway like to believe that I was stressed out, that I needed to take antidepressant, that things are just 'in my head'...
They are the experts, we can't argue with them - especially when my case is one out of a million... It's all in our genes - coupled with bad environmental factors.
Everything could also be explained by our experiencing the menopausal symptoms... But one can't be too careful.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 09-22-2009 at 05:23 PM..
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09-28-2009, 01:09 AM
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#10
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Herceptin - Bladder and/or sleep changes?
wow - interesting....
I have only slept crappy since I started chemo (tried to blame the chemo) but stopped that months ago and still sleep crappy! So, thinking it is the Herceptin, which I have taken almost 6 months (so half way finished!) ...
I'll ask my doc about the scan....
thank you!!!
You should read my health guide --- it rocks! A Cancer Battleplan Sourcebook, by David Frahm... it really explains how to clean the body and free us from cancer - or in my case from getting it again! Very powerful stuff and it explains how to actually DO it!
Karen
__________________
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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09-28-2009, 06:21 AM
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#11
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Junior Member
Join Date: Sep 2008
Posts: 1
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Re: Herceptin - Bladder and/or sleep changes?
What can you tell me about pH and cancer
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09-28-2009, 03:03 PM
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#12
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Herceptin - Bladder and/or sleep changes?
Lots.... to sum it up ... cancer can not grow in a pH neutral environment .... all who have cancer have an acidic system (you can check it) and probably most americans in general have acidic pH to their bodies... because of diet.
I have a ton of info --- send me an email to: wheelistic@yahoo.com and I can get you more stuff.
:-) I am not a "poster child" yet for this, in regards to Her2 survival, however I plan to be in the future - as I believe that this portion of my plan (along with the medical cure) is probably the most important for my overall survival rate!
Karen
__________________
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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11-01-2009, 12:28 PM
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#13
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Senior Member
Join Date: Aug 2009
Posts: 94
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Re: Herceptin - Bladder and/or sleep changes?
I had trouble sleeping ever since I was told breast cancer, then stage 4 - I'm not sure if it's herceptin or nerves, but I take an ativan at night to relax. Night sweats, I went into menopause, so can't tell if it's either that or herceptin.
margie
diag. dcis 08/08
liver met 10/08
tch - 10/08-2/09
her. - 3x
vaccine 6/09 to present
ned - blood normal
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11-02-2009, 09:42 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Herceptin - Bladder and/or sleep changes?
Also remember that chemo puts many of us in a menopausal twilight (sometimes permanent and sometimes now but definitely reduces ovarian activity and estrogen) and some ER+ women are also on drugs for that.
That said, a major side effect of menopause and waning estrogen is bladder infections. The bladder and vagina have millions of tons of ER receptors and need estrogen for the cells to become mature. Immature cells = bladder wall weakness and vaginal atrophy.
This is probably the cause for bladder issues more than herceptin itself.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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11-02-2009, 10:22 AM
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#15
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Guest
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Re: Herceptin - Bladder and/or sleep changes?
Urinary tract infections are a reported side effect with herceptin (I believe the number I read was around 5%). I was one of that group, I had 5 or 6 of them while I was on it.
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02-24-2010, 06:11 PM
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#16
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Guest
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Re: Herceptin - Bladder and/or sleep changes?
Hi,
I ve been thru it all .
diagnosed last march with breast cancer.
Her2new positive.
had 6 months chemo.
left masectomy and 9 nodes removed.
radiation.
now finishing up on herceptin- 2 left.
I keep getting bladder infections. Im scared !
having a test on March 12 th to scan and wash out bladder and check for cancer.
Does this sound familiar?
jhsullens@comcast.net
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02-25-2010, 06:06 AM
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#17
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Herceptin - Bladder and/or sleep changes?
I have found that my bladder issues are getting better, but I am staying really strict to my diet of keeping my pH in the central zone --- 7.0 to 7.5. Also I took a huge amount of "D-mannose" which is a natural product. The best brand I found is made by Pure Encapsulations which seems to be the highest concentration and in a powder form and worked better than the capsules that I had tried. I had problems most of the summer and finally later in the fall then they just went away.
I'm not thinking it is the Herceptin, as I am still on it. So, thinking in turn it was some sort of effect from the chemo. More so, my opinion is that when I was undergoing the chemo my body was in more stress and stress is a big factor in bladder issues. Also, I wasn't eating strict on my vegan diet, and not taking all my vitamins, as my doctors said they didn't want me to.
Also, I have read that Vit C helps with Bladder infections - and I am taking about 7,000 mg per day (powdered form) so I think that is also helping me not get any more bladder infections.
On the sleep issues - (again) - "Pure Encapsulations" - Melatonin (20 mg) - which I found in November (my mom brought a bottle when she came from the US) and it really helped! REALLY! I ran out and thinking I could just buy Melatonin here in Italy - I searched and I found they only sell it in 3mg dosage. More mg is all they say is legal to buy here without a prescription. So I tried the lower dose (even 2 and 3 pills) but didn't work for me. I ordered more from the US - and mom sent them in a card .... somehow they snuck thru customs and I'm back in Melatonin! I am sleeping better every night (it takes a few days to get a build up in the system).
So --- thats my update. Hoping this is the last I see of these problems.
And... hope this helps some of you out there.
:-)
Karen
__________________
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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02-25-2010, 06:41 PM
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#18
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Member
Join Date: Feb 2010
Location: South Jersey
Posts: 22
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Re: Herceptin - Bladder and/or sleep changes?
Karen - Why did you use navelbine with herceptin instead of the normal routine of TCH? Why did you refuse hormone therapy? Please explain your strategy and how you worked with your oncologist if what you wanted to do was not what the oncologist recommended. Thanks! This is all new to me and I am tempted to just do whatever my onc says because she is really good and I want to be as sure as I can to be around to see my grandchildren grow up. Also I am very interested in your vegetarian diet.
__________________
Routine mammo 1/8/10
Ultrasound 1/22/10
Biopsy 2/2/10 - IDC, 2 cm, ER+, PR+, HER2 3+, Grade 3 (8/9)
Liver MRI (for other reason) on 2/12/10 clear - no mets
PET scan 3/5/10 - arm pit lymph nodes "lit up", no other areas of concern other than breast tumor
Lumpectomy 3/10 - tumor and all lymph nodes on left side removed
Pathology report results 3/19 show only 2 of 23 nodes removed were malignant, tumor margins were positive - additional surgery required
Second surgery 3/31/10
Pathology results 4/13/10- all margins clear
Stage 2a bc
Started TCH 4/30/10- finished 8/12/10 (2 more weeks of Herceptin to go)
9/2/10 - started Herceptin every three weeks
PET scan 9/18-10 - all well except shadowy area in lung
Started radiation 9/7/10 - finished 10/21/10
Aromasin started 11/1/10 (hate it!)
PET scan 12/13 area in lung is smaller - probably just inflamation
Aromasin stopped 1/14/11 due to side effects
Currently on AI holiday
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02-28-2010, 09:30 AM
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#19
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Herceptin - Bladder and/or sleep changes?
Nina -
First - I live in Italy (am American) but I moved here to be with my fiance (met him on the street in Rome!) yah, great story, but 3 years in I found out I had cancer. So --- dealing with cancer in another language - well is a bummer! My oncologist speaks some english (but not that great and always seems to revert back to Italian with me) so.... I had to write everything down (even tape recorded some meetings with doctors) then came home and looked up the drugs and therapies on the internet to read about them in english... (side note ---LOVE FREE HEALTH CARE!!!!)
I chose navelbine as I read up on all the "options" my oncologist here in Italy gave me for chemo - as I wanted the Herceptin and no chemo. She said I had to do a "chemo" so gave me 3 options (don't remember the names but can find them if its helpful as they are in my file) - but gave me 3 different options - for the chemo. 1) most effective 2) medium effective 3) least effective
Navelbine was in the 3) catagory - so I originally thought I would just take the "middle" of the road --- however I read about each of the drug options - and there were a few that had things that made me say --- no way - like one on the "medium" list had heart issues as a bad side effect and I thought it would be a double negetive with the Herceptin. Then I found several articles that praised the combination of Navelbine with Herception - saying that using them "together" had the same results as a heavier - more effective (and more TOXIC) chemo. For me it was a NO brainer. Granted I was stage 1 and lymph nodes were clear - so I felt I needed to just combat the Her2.
For homone therapy - same thing --- my doc says it is the "normal" thing to do and that it surely will prolong my life --- but I have yet to find a really positive article that says that "X" drug seems to work well for those with HER2. Most articles I found say that ".... Her2 seems to be resistant to hormone therapy" --- I have googled and searched and searched and yet to find one --- so if you girls out there have a really positive article - I'm all for it! Also --- being premenopausal - there is another type of drugs and I think the post -menopausal drugs have better results with hormone therapy - AI's I think they call them.
I am seriously thinking of begging my doctor here to just take the overies out --- and still not do the drugs.
Also - I am doing a huge diet and nutritional approach with the Herceptin - and modern (west) medicine that I am doing - as I don't want to just leave it up to drugs ... Fundimentally I just don't like the thought of adding one more chemical (with side effects) into my body for my body to deal with... even if I am afraid of this Her2 beast. "chemical" menopause just sounds like something that isn't that great to do --- so I am still not doing "anything".
I want to do everything I possibly can to NEVER see this beast again in my body. So, became a vegan - and am watching my pH and taking a huge amount of supplements ... juicing and doing exercise and yoga... hoping that in 5-7 years I can too become a poster-chick for surviving long term (with no other cancer or chemo) because of diet.
I hit my year mark the other day --- ! ;-)
I have a ton of information on pH and diet - and books and web links if you want - email me and I'll send them to you ---
wheelistic@yahoo.com
:-)
Karen
PS - since you haven't started chemo - search google for Navelbine and Herceptin - you can find the articles and read them. They use it a lot with Herceptin - and you have very similar stats to me --- size and results. I had a 1/4 mastectomy (think they took more though!) but I'm thrilled as the margins were clear and I still have enough I don't look too lopsided!
Oh, and I didn't get that sick ---yah felt like crap - but didn't lose my hair! And that really was a nice thing as I would have just hated to lose my long hair --- I know we all deal with it - but it really helped me stay a bit more positive when the situation was really sucky back last year in the middle of all the discovery of having cancer.
__________________
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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02-28-2010, 11:39 AM
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#20
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Herceptin - Bladder and/or sleep changes?
Have you considered cranberries or cranberry juice for the bladder? It is an old fashioned remedy for bladder infections. Bladder infections can be caused by bacteria that sometimes gets into the bladder and causes an infection. Be sure to drink alot of water during the day. Water helps to flush out bacteria. Of course you may want to drink less water before bed time. Have you tried warm milk before bed to help with sleep? If that doesn't work a supplement called Melatonin might help.
Last edited by ElaineM; 02-28-2010 at 12:23 PM..
Reason: addition
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