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Old 02-19-2010, 03:41 PM   #21
Pam P
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Re: scan results & new treatment update

Thanks Chrisy & Becky for more support on adding the femara. It's on my list to ask about next week.

Here's my understanding of what my onc disagreed with about treating with AI and chemo simultaneously. It doesn't apply to using AI with femara, faslodex, but with cytotoxic drugs such as navelbine, taxanes, etc. He says the AI s slow down the activity of the cells at least hormonally and maybe as a result in how fast they grow/divide. Cytotoxic drugs kill fast dividing cells so you want the cells to be fast dividing for the cytoxins to kill them rather than be slowed down by the ai and not as affected by the toxins. At least that's how I remember him explaining it to me, but that was many months ago and I mayhave it mixed up.

I'm trying to get myself in a more positive place. I agree with those who have said it's important to do. I'll get there i hope. Part of my issue other than bein bummed by the scan reports & sinus issues is that this week my hips & tops of my thighs have been so painful that I ache all over and feel like I'm having a hard time standing, sitting, walking, etc. This is new. Maybe it's muscle weakness from laying around so much with the sinus sickness. I'll give it the 2 week rule and report it if it doesn't improve soon. Wow, thanks for listening to my long list of woes. Pam
P.S. this eternal winter, snow, cold, ice isn't helping - spring can't come soon enough!!!
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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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Old 02-19-2010, 04:29 PM   #22
Rich66
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Re: scan results & new treatment update

Quote:
It doesn't apply to using AI with femara, faslodex
Not sure what you mean. Femara and Faslodex are AI, Aromatase inhibitors.
But yes..the theoretical argument has been the same for proliferation targeting trugs as well as radiation: Don't combine with anything that slows the cells down.
In both cases the theory is being disproven. I put the support for chemo-endocrine here so it can be shared with oncs.

In the case of Her2 + Er targeting agents, there shouldn't even be a theoretical concern at this point. Recent Tykerb/Femara approval is case in point.

I get the sense that curriculums get pretty solidified and comfortable in clinical practice. It can't be easy for oncs to change the way they do things. Docs of all kinds seem to have strong training or inclination to never appear "wrong". There was an example on this board recently of an onc wanting to proceed with metronomic therapy but was afraid what clinical peers would think. That speaks to a strange professional pressure when the doc confides in a patient this way. It must be hard trying to appear informed and scientific when the science involved is so unpredictable. But patients have the larger right to all the tools at their disposal...even if it means changing the "rules" along the way. It's not being wrong. It's just part of the seemingly endless struggle to get it right.
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Old 02-19-2010, 06:47 PM   #23
Pam P
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Re: scan results & new treatment update

Rich - I typed that wrong. I meant to say "it doesn't apply to using ai with herceptin / tykerb". Sorry. Glad there's new research supporting more options. The stance you describe of docs supporting their old theories despite evidence to the contrary I don't believe applies to my onc., thankfully. However, he is more apt to site proven protocols. But he is very willing to listen to my questions and requests and consider these options.
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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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Old 02-19-2010, 08:42 PM   #24
Rich66
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Re: scan results & new treatment update

That's good. Because the chemo-endocrine thread just got a little longer. femara + various chemos + Avastin.
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Old 02-19-2010, 09:55 PM   #25
Jackie07
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Re: scan results & new treatment update

Pam,

Found a link talking about cleaning the 'debris' in the sinus:

http://www.arizonasinus.com/endoscop...us-removal.htm

Looks like an easy procedure to clean up the thickened mucous.
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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
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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.
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Old 02-20-2010, 03:34 AM   #26
Pam P
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Re: scan results & new treatment update

Thanks, Jackie, for that link. Very informative. I sure hope I don't need to do that surgery though. I'm hoping some non surgery meds might clear it up first. Monday I'll see the ENT. Thanks again.
__________________
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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Old 02-20-2010, 02:44 PM   #27
Joan M
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Re: scan results & new treatment update

Pam,

Thinking about you and hoping one of these combos will work to knock down the markers and mets.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 02-20-2010, 05:45 PM   #28
mmoons
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Re: scan results & new treatment update

Pam-

I wish I am sending you lots of love and prayers. You have so much going on and I can only imagine how overwhelming it must be. Please feel all the love and support coming your way. This combo will be the one to get your back to NED.

Hugs,
Maureen
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My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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