| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
 |
10-18-2010, 04:48 PM
|
#1
|
|
Junior Member
Join Date: Oct 2010
Posts: 3
|
Brain Rads Tykerb not feeling great
I just had 4 brain lesions appear after 15 years of quiet breast & lung control. Got 10 zaps and the steriod dexamethasone screwed me up with a feeling of no control(weird)! Now off dex. and feel more control but very weepy, fatigued, and blue! Appetite is all screwed up, dont have a lot of attraction to many foods. Have a hollow feeling in the middle of the night and need to munch on something. I have been on zoloft for 15 yrs and I am wondering if the rads could have stopped or interfered & caused it to stop working or if I can be immune! Never ever have I felt this way during the 15 years I have been dealing with Cancer. Love for feedback or advice.Thanks Di
|
|
|
|
10-18-2010, 04:53 PM
|
#2
|
|
Junior Member
Join Date: Oct 2010
Posts: 3
|
Re: Brain Rads Tykerb not feeling great
I got the rads in July & started me up on Tykerb plus the old reliable Herceptin which i have been on for years !! Tykerb seems to be kicking me while I am down as well!
|
|
|
|
|
10-18-2010, 09:12 PM
|
#3
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Re: Brain Rads Tykerb not feeling great
I don't have any solutions for you, but I stopped by to say hang in there and take good care of yourself.
|
|
|
|
|
10-19-2010, 06:48 AM
|
#4
|
|
Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
|
Re: Brain Rads Tykerb not feeling great
mjones, have you been dealing with lung mets for 15 years? You are understandably feeling low after 15 yrs and then to have it come back like that. I find tyverb very tolerable, maybe you will begin to feel better soon, I would think its the shock of what you've been thru rather than tyverb that has you feeling low. You will get good advice here. hang in there. You could check up Courtney's posts. She is an inspiration. Check out what she says about Boswellia.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
|
|
|
|
|
10-19-2010, 09:57 AM
|
#5
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Re: Brain Rads Tykerb not feeling great
Dexamethasone has all sorts of side effects, which are not light ones. When I took it, I had appetite, sleep disturbances and there is such a thing as a steroid "crash." Also, weakness in your legs which takes a while to build up from.
I experienced all those myself. Work on your eating to gain strength, and try to walk a little more each day. Between the brain zaps and the dex, what you are feeling is to be expected. Although the docs don't usually tell you that!
BTW - congrats on a long life since diagnosis!
__________________
"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.
|
|
|
|
|
10-19-2010, 02:30 PM
|
#6
|
|
Member
Join Date: Oct 2010
Location: Paxton,IL
Posts: 11
|
Re: Brain Rads Tykerb not feeling great
I was started taking seven dex. last August and had a very hard time quiting the drug. It helped me eat and gave me the energy I needed to deal with my five year old daughter.
Ive been on Herceptin for three years, and Tykerb about a year. I take diphen/atrop to control side effects (freq.bathroom breaks) Im on Tykerb in the amount of 5pills. I take a d/a the first five min Im awake, than five min after taking Tykerb at night. If I miss it by five min it does me no good
|
|
|
|
|
09-25-2012, 11:12 PM
|
#7
|
|
Member
Join Date: Sep 2010
Location: Grapevine, Texas
Posts: 5
|
Re: Brain Rads Tykerb not feeling great
StephN, I did the U of W trial also, wonderful professionals, a real treat to be in their care. Not feeling very hopeful at the moment, I do not understand how anyone affords Tykerb. The co-pay on medicare is $1,600 a month. Lindy
|
|
|
|
|
09-26-2012, 11:30 AM
|
|
yanyan
|
This message has been deleted by yanyan.
Reason: wrong
|
|
09-26-2012, 06:15 PM
|
#8
|
|
Senior Member
Join Date: Sep 2012
Posts: 29
|
Re: Brain Rads Tykerb not feeling great
I admire your courage. This is a tough journey we are all on, but just being here, means we are winning. I took Zoloft for years, and then a few years ago it stopped working for me. My physician switched me to Cymbalta and it has made all the difference. I take Tykerb and Xleoda, and just stopped Herceptin, and none of these have interferred with the Cymbalta. Good luck to you.
|
|
|
|
|
09-26-2012, 07:12 PM
|
#9
|
|
Member
Join Date: Sep 2010
Location: Grapevine, Texas
Posts: 5
|
Re: Brain Rads Tykerb not feeling great
Thank you everyone for your courage and sharing, makes me feel the fight is worth it.
|
|
|
|
|
09-26-2012, 07:21 PM
|
#10
|
|
Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
|
Re: Brain Rads Tykerb not feeling great
Ah bummer. I'm so sorry you are feeling so crappy. I don't have advice I just want to say I hope you are feeling much better soon.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
|
|
|
|
|
09-26-2012, 10:00 PM
|
#11
|
|
Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
|
Re: Brain Rads Tykerb not feeling great
mjones, Oh I am so sorry. Whenever we get mets results, they are so traumatic to the total body and emotional system. It's a horrible feeling being in that position and feeling so blue. I'm there now with news I just received....It's only been a few days but I'm trying hard to accept the shocking bad results and taking it one day at a time. I'm trying really hard not to think of it so much all the time. I watch a little TV or read a little to distract myself. Think of your comfort foods or which foods seems to taste better now, and snack and sip often. Take small walks even if only to the kitchen, living room or mailbox, and nap when you can. Hope you feel a bit better and have continued improvement. Keep us posted. Sending Squeezing Hugs to You, Jo
All, I have been on Zoloft since 1994 (had a few very traumatic life events & history of depression & anxiety). I have often wondered how many of us have been on anti-depressants prior to dx??? and if any of you think they could have possibly contributed to getting cancer??? Has this every been surveyed or thoroughly researched???
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.
|
|
|
|
| Thread Tools |
|
|
| Display Modes |
 Linear Mode
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 12:24 PM.
|
