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09-28-2010, 03:45 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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new diagnosis in addition to bc?
I continue to be plagued with fluid build up, rash, severe loss of strength & fatigue. I've been off all chemo since mid Aug. the thinking from my onc. being that I was having a toxic reaction to chemo. But nothing has improved & he's sent me for different tests & different doctors. Today I saw a dermatologist and I think he's really sharp and may get somewhere. He took 2 biopsies of different rash areas and 7 tubes of blood. He suspects a disease called dermatomyositis, a totally separate autoimmune / connective tissue disease. No cure, treatable with prednisone or other drugs I haven't heard of. I won't know if this is it until all the tests come back but the descriptions I'm reading sound exactly like what I'm experiencing. It sounds chronic and not easy to overcome especially with dealing with chemo drugs too. Not good news, but maybe at least we're getting to some answers and some help to relieve my symptoms which are miserable and debilitating right now. I'm also seeing a rheumatologist next Monday. I'll post again when I know more.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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09-28-2010, 03:50 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: new diagnosis in addition to bc?
Wow Pam!
Something like that certainly would not be good news; except that knowledge of what you're dealing with is good because it can point to some plan of action.
Hang in there
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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09-28-2010, 04:11 PM
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#3
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: new diagnosis in addition to bc?
Even if it is not always what we want to hear, knowing what one is dealing with is always a relief, I think. Because then at least you can make a plan and get into action
And it serves to remind that just because we have cancer doesn't mean we can't get other disorders. Although that has always seemed unfair to me!
Keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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09-28-2010, 04:18 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: new diagnosis in addition to bc?
Makes me want to scream that you even have to deal with all this at once! But you're one tough cookie, Miss Pam! Much love, ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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09-28-2010, 05:10 PM
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#5
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: new diagnosis in addition to bc?
Pam,
I am very sorry that you are dealing with this new issues but it really sounds like you found the right doctor and can get some help.
Please keep us posted.
Best,
Karen
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09-28-2010, 05:15 PM
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#6
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: new diagnosis in addition to bc?
Sure hope they figure that out. As crappy as it is (on a very crappy crapstick), the knowledge might allow the cancer treatment to move forward. Do you have any reasonably easy area to biopsy for chemosensitivity testing? Just wondering if it would be opportune, given the treatment break you were forced into.
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09-28-2010, 05:22 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: new diagnosis in addition to bc?
Rich - my mets are only in the bones - so I guess no easy biopsy areas. On line I read that if prednisone isn't effective in treating this dermatomyositis, methatrxate (sp) is an alternative. I thought maybe I can get the same drug to treat that & the cancer both - at least for awhile.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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09-28-2010, 05:30 PM
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#8
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: new diagnosis in addition to bc?
Interesting idea with the methotrexate. Have you had to skip Zometa?
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09-28-2010, 08:55 PM
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#9
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: new diagnosis in addition to bc?
I was just thinking of you and wondering how you are doing Pam.
It may be upsetting to find out we have one more health problem, but if your new problem can be controlled with medications and perhaps other threatments that is a good thing. I guess one way of looking at it is that it is not more cancer and that is a plus.
Perhaps your Chinese doctor can suggest something if the dermatologist can't suggest something for it.
Hang in there and take good care of yourself.
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09-28-2010, 10:02 PM
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#10
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: new diagnosis in addition to bc?
Pam,
Thinking of you tonight and sending lots for prayers for you.
hugs,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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09-29-2010, 01:53 AM
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#11
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: new diagnosis in addition to bc?
I'm sorry you're dealing with this too Pam and hope they get answers and relief for you soon. x
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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09-29-2010, 03:04 AM
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#12
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: new diagnosis in addition to bc?
Thanks for letting us know. Hope the treatment ideas work.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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09-29-2010, 10:51 AM
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#13
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Senior Member
Join Date: Aug 2010
Posts: 45
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Re: new diagnosis in addition to bc?
Hugs pam? Hope you get better soon...at times dealing with symptoms is half the battle
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09-29-2010, 10:07 PM
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#14
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: new diagnosis in addition to bc?
Pam,
Cheers to you for looking for a good doctor and looking for "better" answers. We hope that you can get some relief. You are a brave lady. Keep up the good work.
Hugs, Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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09-30-2010, 04:28 AM
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#15
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: new diagnosis in addition to bc?
Pam
Sorry to hear about the added problem, but glad they are finally trying to get to the bottom of it all. You spoke about Methotrexate, which is what I was on....I had it for Metronomic Chemo with Cytoxin, but it is used in many auto immune diseases and rheumatoid arthritis...my only issues with it was a rise in Liver Enzymes, but it went away after being off for a week...
Always keeping you in my prayers for that perfect treatment...its there for you...never lose hope.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-30-2010, 04:55 AM
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#16
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: new diagnosis in addition to bc?
Pam,
I think about you often and although this latest news appears to introduce new challenges, at last you are armed with knowledge and can begin to take the appropriate steps to correct.
You are one smart warrior, as you continued to seek answers and finally found a Dr. some answers. That takes bravery, stamina, courage....all the reasons I look to you for continued inspiration.
Hoping for the right solution and rapid healing....Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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09-30-2010, 10:03 AM
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#17
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Member
Join Date: Nov 2005
Posts: 23
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Re: new diagnosis in addition to bc?
Pam,
I hope the new diagnosis is helpful and can bring you to a better place. You sound as though you have really been struggling.
I have an autoimmune disease called vasculitis and I took high dosages of steroids when I had my first diagnosis. I was incredibly ill and the steroids saved my life, I'm pretty sure. They worked quickly and were most effective. I also have been on Immuran (another form of Methtraxate) for two years now and have had no problems with it. I have not had another flare of the vasculitis.
So perhaps a similar treatment for you will bring good results also.
My main doctor now, besides my oncologist, is my rheumatologist. She is an expert in my type of vasculitis and I am so thankful she is based in Pittsburgh. I think/hope you will find your rheumatologist to be quite knowledgeable on such an immune problem.
Please continue to let us know how you are faring - I'm thinking and praying for you.
Jane
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10-01-2010, 02:55 AM
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#18
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: new diagnosis in addition to bc?
Pam,
I'm glad they think they found and answer to the problem...but I'm so sorry to hear you have to deal with yet another medical issue. Especially one that sounds serious, and makes you feel so bad. I hope their wrong and actually find a much simpler issue that just hasn't resolved as of yet. That last chemo regimen you were on was quite a combination...maybe its just taking longer your body longer to recover? (Crossing my fingers and hoping for the best.) Stranger things have happened.
My heart really goes out to you Pam...it's rough enough to battle with cancer with all the endless appts, scans and what not..now this added on top of it all. I can only imagine how your feeling right now...and it's not good. I will continue keeping you in my thoughts and prayers. (I'm seriously hoping their wrong about this autoimmune diesase and it's just going to take your body a little longer to recover this time?) Sending lots of healing energy your way.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
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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10-01-2010, 07:14 AM
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#19
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: new diagnosis in addition to bc?
Hello Pam. Hope you are going to have answers soon so that you and your doctors can begin a plan of attack that has you feeling much better.
Barb A.
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10-04-2010, 04:10 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: new diagnosis in addition to bc?
Today the rheumatologist confirmed that I have dermatomyositis. I start 60 mg of prednisone daily tomorrow. I'm scared of all the icky s/e but sure hope it will relieve my symptoms. I see the rheumatologist again in 3 weeks. I see my onc. this Wed. Am anxious to know how he will coordinate my chemo tx ( and what chemo this will be now) with this added dx.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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