HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 01-19-2013, 02:56 PM   #1
jml
Senior Member
 
jml's Avatar
 
Join Date: Dec 2006
Posts: 415
Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Hi Friends~
So excited to report that I started Pertuzumab on Thursday, with a mini dose of Taxotere because my plateletts are so low, and Herceptin.
I know this combo is going to work!
BUT, this diarrhea that I'm experiencing 36 hours after is BRUTAL and rivals Tykerb as I remember it.
At least the infusion is only q3 weeks, so I hope this side effect doesn't last the entire time.
I'm afraid to eat out or eat and leave my house for fear of something really awful happening while I'm out in public!

I know this is a common side effect, but is there anyone else out there that can share some practical information about their experiences?

I don't want to have to bail on this regimen bc of the GI issues!

Keeping the Faith~

Jessica
jml is offline   Reply With Quote
Old 01-19-2013, 03:18 PM   #2
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Hi Jessica -
GOOD for you! So glad to hear you got this drug combo.

Knowing that there can be GI issues with P, did you work on getting your gut as healthy as possible with supplements such as acidophilus and bifidus?

Flori has a thread on this issue and others have also mentioned having this problem, and it seems to lessen for most. Hope this will be the case for you as well.

How is your chest? Did the rads treatment tire you? Sounds like it had the desired effect on the tumor.
__________________
"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.
StephN is offline   Reply With Quote
Old 01-19-2013, 04:24 PM   #3
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Oh Jess!
I'm so happy and excited for you! My Tykerb diarrhea comes and goes. I have found that lately, since starting an iron supplement daily...the two SIs sort of balance out on most days. Not recommending that as a fix for anyone else, but it's working for me lately!
Sending prayers, love and a healing glow your way!
You go girl!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
NEDenise is offline   Reply With Quote
Old 01-19-2013, 06:14 PM   #4
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Hi, Jessica
Glad to hear that you have started the infusions (let's do this thing!!). Sounds like your body is reacting to a new and different type of medication, and this is a good sign, it's unlike anything it's felt before...the cancer cells are bound to be shocked.

I don't have the d. issue. But I have found that lentils, peas, and a diets of bean protein helps. Keep that Pedialyte on hand, one cup for every episode.

Feel good, my friend.
Love
Karen
KDR is offline   Reply With Quote
Old 01-19-2013, 06:37 PM   #5
Paty
Senior Member
 
Paty's Avatar
 
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Jessica,
Hope you feel well soon and that the side-effects go away so you can be free to keep going with your life. Sending you love and hugs.
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
Paty is offline   Reply With Quote
Old 01-19-2013, 06:54 PM   #6
karen z
Senior Member
 
Join Date: Apr 2008
Posts: 1,477
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Jess,
Very good news that you are on the new plan.
Sorry about the side effects. Sounds like you have (already) some good things to try.
karen z is offline   Reply With Quote
Old 01-20-2013, 11:30 AM   #7
carolanno
Member
 
Join Date: Jul 2012
Posts: 19
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Have you tried Immodium? That always works for me.
carolanno is offline   Reply With Quote
Old 01-20-2013, 11:33 AM   #8
carolanno
Member
 
Join Date: Jul 2012
Posts: 19
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Have you tried Immodium? That always works for me. also, remember, loading dose is twice normal dose so side effects should lessen next infusion.
carolanno is offline   Reply With Quote
Old 01-20-2013, 08:03 PM   #9
Pray
Senior Member
 
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Jessica, I'm so glad you started the treatment and for the most part so far so good. I hope someone here comes up with the right fix for your other problem. Gods blessings to you. You are always in my prayers.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
Pray is offline   Reply With Quote
Old 01-21-2013, 06:45 PM   #10
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Jessica,

Man, that sounds wicked, but hopefully the GI problems will lessen with more exposure to the drug. I think Flori has been trying to work through it, too, and it does seem to be a rough-go (no pun intended) initially. Still, I am glad to hear you have a regime going now. How are you feeling post radiation? Did it help to relieve some of the cardiac symptoms?
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

Laurel is offline   Reply With Quote
Old 01-22-2013, 10:38 PM   #11
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Started Pertuzumab on Thursday...YAAAY! Major diarrhea...BOOO:(

Jessica,

I always cook plain rice suop - just rice and a lot of water cooked in the pot. Rice is starch which be dissolved by mouth water. Chew it real well in your mouth before swallowing... The liquid will keep you hydrated. Give it a try...
__________________
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
Jackie07 is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 09:44 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter