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04-28-2010, 09:39 AM
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#1
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Need Advice n!!!
I have been approached by a Certified Oncology Nurse who is interested in offering her advice to members.
As this is a delicate issue (liability) we will not disclose her name .
Also as with our other boards, any medical information that you receive on this website should be confirmed with your medical team before implementing.
Is there an interest in this new board?
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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04-28-2010, 09:55 AM
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#2
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Need Advice n!!!
Joe,
If she can write short educational articles about the various kinds of breast cancer drugs and treatments (general patient education regarding side effects and other information) that might be good, but otherwise I think we have everything covered. Please tell her thanks for her kind offer.
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04-28-2010, 10:16 AM
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#3
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Need Advice n!!!
I think she would be a wonderful resource and was very generous to make this offer. It would be so helpful to get answers from an actual qualified professional working in the field. I understand that you and she might have liability issues though.
__________________
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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04-28-2010, 11:29 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Need Advice n!!!
I do think adding the professional nutritionist was quite helpful. Would you create a separate forum for her?
A.A.
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04-28-2010, 12:18 PM
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#5
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Need Advice n!!!
Joe, you used to talk about adding a health professional that could put a lot of the technical abstracts we read into plain language. Would she be able to do that? If so, I think it would be a good addition. Also, I still see a lot of members posting for advice in handling treatment side effects. Perhaps she could be helpful there.
Hopeful
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04-28-2010, 12:44 PM
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#6
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Re: Need Advice n!!!
Alaska Angel - YES
Hopeful - We do have an oncologist who covers the major meetings. I posted her San Antonio report several weeks ago.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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04-28-2010, 12:58 PM
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#7
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Need Advice n!!!
Joe,
I am thinking more along the lines of when one of us finds a technical article and posts it, there is someone here on staff to help interpret it.
Hopeful
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04-28-2010, 02:43 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Re: Need Advice n!!!
I think it would be nice to have her assist us with questions, interpretations of medical articles, and more... anything that she could offer and be authorized to do so, would be wonderful. The hard part would be for her to know what she could and could not address.
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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04-28-2010, 02:51 PM
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#9
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Need Advice n!!!
I personally have been in many well known and highly raded treatment facilities and have not found general oncology nurses to know much about the different types of breast cancer, how treatment differs for the different types, what is new, etc. They do know methods to deal with various side effects. If we had this offer from an oncology nurse who has only worked with breast cancer patients (better yet a breast cancer PA at a major breast cancer treatment center), it might be more useful for some visiting this site.
It is a generous offer. Any information on why she is making this offer?
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04-28-2010, 03:23 PM
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#10
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Re: Need Advice n!!!
I do know that she has over 20 years of experience at a practice that treats all cancers, but I think all she does is work with the bc patients.
She is very experienced,
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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04-28-2010, 04:12 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Need Advice n!!!
Thanks, Joe. I think it could provide a somewhat unique opportunity to open up lines of communication in both directions, and provide some good discussion. There are a number of medical people on the forum here who are busy dealing with bc themselves and who don't pretend to know all there is to know.
AlaskaAngel
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04-28-2010, 06:50 PM
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#12
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: Need Advice n!!!
In my opinion, I think this is a good thing. Her input can be very valuable to the site as long as she is capable of saying, "I don't know, but I will check and get back to you". Her experience will be a strong addition to the site.
__________________
For Nicola
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04-28-2010, 09:05 PM
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#13
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Need Advice n!!!
I'm suspecting oncology nurses are more tuned into the side effect issues so they could be a great resource in that area. Conversely, I bet a nurse could benefit from seeing what patients come up with and come across. The ever-expanding/oft unspoken strategies to deal with hand foot syndrome come to mind.
If well connected, or even simply through having a med credential, an an onco-nurse could be a valuable liaison into hierarchies most can't access.
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04-28-2010, 09:09 PM
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#14
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Need Advice n!!!
She might be able to interpret scientific articles about breast cancer.
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04-29-2010, 12:34 AM
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#15
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Need Advice n!!!
An experienced nurse is quite often more knowledgeable than a well-trained doctor - especially in the hands-on, clinical settings. She/he also can be a great 'gateway' - pointing the patients to the right direction... How wonderful! I'm looking forward to meeting another expert on this Forum.
__________________
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
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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
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Tamoxifen B. scan
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Vertigo
GI - > yogurt
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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
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04-29-2010, 07:06 AM
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#16
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Guest
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Re: Need Advice n!!!
I think it is wonderful that all the latest research articles are posted but most of the time I don't understand what the finding are. Someone to post the findings in plain English would be fantastic!!!
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04-29-2010, 10:29 AM
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#17
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Need Advice n!!!
I also think this would be a great resource here for many 
__________________
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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