HonCode

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

Reply
 
Thread Tools Display Modes
Old 06-30-2008, 10:55 AM   #21
michka
Senior Member
 
michka's Avatar
 
Join Date: Feb 2007
Location: Paris, France
Posts: 858
Post

Switched from Arimidex to Aromasin. I had too much pain in my hands and my knees. Aromasin is not much better. Onc then told me to take it every other day. I do not feel comfortable with this. He thinks Tykerb increases the side effects and the fatigue. He wants me to finish Tykerb in October and then go back up to one Aromasin every day. I hope it is still working.
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
michka is offline   Reply With Quote
Old 07-01-2008, 12:17 AM   #22
harrie
Senior Member
 
harrie's Avatar
 
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
My switch from Arimidex to Femara is not significant in terms of joint discomfort. But at this point it is manageable and just hoping it does not get worse.
At least I don't have a locked thumb like before.
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
harrie is offline   Reply With Quote
Old 07-01-2008, 12:52 AM   #23
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
I was on arimidex and switched to femara which did not bother me nearly as much.
Good luck!
fLORI
__________________
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.
SoCalGal is offline   Reply With Quote
Old 07-01-2008, 02:43 AM   #24
R.B.
Senior Member
 
Join Date: Mar 2006
Posts: 1,843
Loss of oestrogen will result in women being able to produce less long chain Omega 3 DHA [The Omega 3 found in fish oil] from the mother fat in the diet [vegetable sources like flax seed oil].

Arimidex [anastrozole] further decreases DHA production by the body.

The DHA and EPA in fish oil are anti inflammatory. Omega six is a raw material of inflammatory chemicals in the body.

Fish oil has been reported to reduce pain and assist in arthritis. Please see Greek Diet thread.

Please discuss dietary change with your doctor.

RB

Last edited by R.B.; 07-01-2008 at 10:53 AM..
R.B. is offline   Reply With Quote
Old 07-02-2008, 03:23 AM   #25
R.B.
Senior Member
 
Join Date: Mar 2006
Posts: 1,843
From comments here http://her2support.org/vbulletin/sho...midex+fish+oil fish oil in adequate amount may indeed help.

As always I would suggest giving thought to looking at Omega 6 intake and balancing the omega 3 and 6 mother fats etc. See Greek diet thread.

If the symptoms respond to COX blockers Nasids then adding fish oil and balancing the Omega 3s and 6s should help.

You are probably going to have to consider the higher end of dietary recommendation eg 3 grams DHA and EPA combined total 3tps of high strength quality fish oil to see noticble effects and it may take a while.


Please discuss dietary change with your doctor.


RB

Last edited by R.B.; 07-02-2008 at 03:30 AM..
R.B. is offline   Reply With Quote
Old 07-02-2008, 10:09 AM   #26
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Wink Balancing Omega 3 & 6/unblocking Conversion Pathways

Yes, RB! This is what I have learned from you, and tell everyone who is suffering from joint pain. I am 63 yrs old, and I have NO joint pain. I believe my Omega 3 supplements contribute mightily to this happy factor, among MANY other beneficial attributes of Omega 3.

You should write a book! Oh, right -- you did!! And, we should all read it's messages. As you so brilliantly point out in your OMEGA SIX THE DEVIL'S FAT -- A MESSAGE OF DIETARY HOPE: "We ARE truly the fats we digest"... "The message (of this awareness) lives in the shadows, waiting to be heard."

"This discovery of the researchers, may prove to be a fundamental dietary truth of enormous consequence. Become passionate about your physical essence, fats."

I PERSONALLY THANK YOU FOR HELPING THE "ILLUMINATE THE ELEPHANT IN THE GLOBAL ROOM".
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...

Last edited by Andrea Barnett Budin; 07-02-2008 at 10:10 AM.. Reason: BUTTERFLY ISSUES. AGAIN!
Andrea Barnett Budin is offline   Reply With Quote
Old 07-03-2008, 11:49 PM   #27
harrie
Senior Member
 
harrie's Avatar
 
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
Andi, I see you were on Tamoxifen for 2 yrs. Are you currently taking an aromatase inhibitor?
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
harrie is offline   Reply With Quote
Old 07-04-2008, 01:43 PM   #28
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Wink Harrie Canarie...

Hello Maryanne!

You have been on my mind. I think I owe you an email. No, I know I owe you one. You are such a sweetheart. And I love your spiritual quest. You go, girl!

When I was orig dx, in '95, I was considered *borderline* ER/PR. So they put me on Tamoxifen, hoping I would gain some benefit.

When I recurred in '98, I was ER-/PR-. I was told to toss the Tamoxifen in the toilet. No good FOR ME.

I also found out about the newly discovered HER2 neu gene, and tested 80% positive for that!

Paul and I had been keeping up to date re bc, so we requested that test. Herceptin was still in clinical trials. I tried to get into one, to no avail. Too much Adria in '95. HOWEVER, The FDA fast-tracked this life-saving drug that tens of thousands were being denied access to.

So I became metastatic (throughout my liver) in Aug of '98. And Herceptin became available to met bc patients Sept. 28, 1998! I was so lucky. In the right place at the right time.

Had I received Herceptin as newbies now can do, perhaps I never would have recurred. Or had to deal w/Taxotere.

Still and all, I am grateful for that horrid drug. It helped save my life! And put me into remission.

Now I remain on Herceptin (in my 10th year!!) -- keeping further mets at bay.

I feel so blessed.

Love your attitude, Harrie Canarie... HUGS TO YOU!

Happy 4th. We are free to be!!

Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
Andrea Barnett Budin is offline   Reply With Quote
Old 07-04-2008, 06:35 PM   #29
harrie
Senior Member
 
harrie's Avatar
 
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
Hi Andi!
Thanks for your response.
The reason I was asking about the AI for you is because I assumed unless you were on an AI, why would you have joint pain? Although I do realize that there are some out there that are experiencing joint pain from the herceptin.
I never had joint pain from herceptin or tamoxifen. I do have it from the Femara. I can function (for now) but don't like it. I plan to give the Omega 3 a try soon. The chondroitin/glucosamine combo from the TriFlex from GNC doesn not help much.

You are my role model, you know that don't you...
from both the physical as well as spiritual aspects.

...we are what we are....and that is what makes life so beautiful....
(do you think I am catching on???? hee,hee,hee,heee!!)
muchas alohas,
harrieeeecanareeee
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
harrie 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 12:42 PM.


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