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07-28-2009, 08:02 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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Message Boards
In preparation of our new website, I need input for our message boards.
Are there too many catagories? Should any board be eliminated?, combined?
New catagories, any ideas of any catagories that should be added? I was thinking of a HER2 Traveler section. As our members travel here and overseas, they can post their itiniary and possibly meetup with other members.
Any other ideas?
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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07-28-2009, 10:35 AM
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#2
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Joe,
I'm looking forward to the new website. I stumbled across the test version and it looks great.
I do have a request, but I have no idea if it is doable. Occasionally I will come across a posting that either has special meaning to me, or it is something that I would like to be able to go back to quickly for reference. Sometimes I open something up and then realize I don't have time to read it until later. I wish there was a way that I could mark a thread like I can my e-mails. In g-mail, there is a blank star next to each one that I can click on and it fills in, letting me know that I want to go back to it again. Right now, I copy and paste things and save them to a word document for future reading.
Thanks Joe, for all you do!!!
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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07-28-2009, 10:37 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Making it happen
The boards have provided excellent support and avenues for exploring and sharing. I do think that the idea of having someone (perhaps as part of their own advanced education efforts) provide some help with interpreting and answering questions, or pointing people to sources, would be great....
Other than that, the time required to keep it up is a very important consideration, and appreciated....
AlaskaAngel
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07-28-2009, 10:48 AM
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#4
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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I had some issues with clipped border printing until I found the printing function under thread tools. Maybe a dedicated button for that? If you want to get fancy, being able to select how much of a thread you print could be helpful.
I have reposted various compilations of remedies for hand/foot syndrome..maybe a permanent place for that would be helpful.
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07-28-2009, 11:47 AM
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#5
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Joe,
If you could enable the "quote" feature on the board, it would be great. "Quote" appears next to the edit button at the bottom of every post. You are supposed to be able to click on it, and the screen then displays the text of the post you clicked like this in the box, so you can address a specific issue in a post without having to rekey it into your response. I have never understood why that was not functional on this board.
Thanks,
Hopeful
Last edited by Hopeful; 07-28-2009 at 11:51 AM..
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07-28-2009, 11:48 AM
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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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AliceM
If you go to "Thread Tools" at the top of the thread. You may email the threads to yourself. Create a file on you mail program and store them in there.
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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07-28-2009, 12:29 PM
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#7
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Senior Member
Join Date: Jan 2008
Location: Oregon City
Posts: 856
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Alice:
You can also hold down the left mouse button and highlight what you want to quote, then hit the 'Edit' feature of your web browser, then open the reply window and paste it into the window.
Joe, I think you have done a great job on the categories for this web site. I think there is a consensus that the number and types of categories is about right.
Lee
__________________
This happened to Colleen:
Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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07-28-2009, 12:34 PM
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#8
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Lee,
I am the one that wants to quote things. Yes, your way works, but it should not be necessary because the board clearly has the technology to make it one click. Plus, when enabled, the board software automatically inserts the name of the person being quoted, and offsets the quote in the box as above in my sample. To get the box, you not only have to cut and paste, you have to physically write out the words "quote" and "/quote" with brackets around them. There is no way to get the posters name to automatically pop-up in bold that way. I am just asking that the function be turned on.
Hopeful
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07-28-2009, 01:41 PM
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#9
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Senior Member
Join Date: May 2006
Posts: 3,142
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Message Boards
Everything is great. Maybe we could add a section about nutrition. Thanks for all you do.
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07-28-2009, 03:47 PM
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#10
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Thanks Joe and Lee,
I have e-mailed postings to myself, but that is not what I really am talking about. I am interested in more of a symbolic visual thing. For example on the "Her2" thread page there is the far left column where the envelope symbols are, then there is a column where other symbols appear (like right now there is the "exclamation symbol" next to Andrea's "Be Brave" thread). I wish there was another column that would enable me to click next to a thread and mark it . . . showing that I want to go back and re-read something there, reply to a post at a later time, or it just has something in it that I find special.
Sometimes there is a thread that contains something written by a member that is so poignant or touching that I just want to mark it or highlight it so that I can find it again quickly without having to open all the threads, and scan through all the posts looking for it. Maybe I'm the only one out here who is interested in this and it would be to difficult to incorporate. If so, I can just keep doing what I am doing . . . I copy meaningful comments, or special stories and then paste them into a Word document that I have labeled "Her2 stories". One such example is the story that AbbyDawg posted about the 95 yr. old woman from Minnesota who is a 57-year cancer survivor.
It could be something similar to the little blue and white checkmark that is to the right of the thread title that indicates we are subscribed to a thread. The only difference would be that we place the marker that would flag a thread instead of it being done automatically like the subscribed thread marker. Does this make sense?
Sorry I rambled, but you did ask for our thoughts  . This is just something I thought might be helpful for others but I don't want you to mess with it if it is too difficult to create. I'm not that computer programming literate so I don't even know if this is possible.
Joe, thanks for listening AND thanks for asking. Frankly, I love the site and can't imagine how it can be improved upon!
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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07-29-2009, 08:43 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Message Boards
Hi Joe!
Another reason why this web site (that you and Christine are webmaster of) is such a success - you take the time to ask us what we think. I have no suggestions, I think it is great just the way it is - but I needed to weigh in and thank you for asking.
Love Kim from CT
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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07-29-2009, 08:53 PM
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#12
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Message Boards
Joe, has there ever been a question you wished you hadn't asked? LOL
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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07-30-2009, 06:20 AM
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#13
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Senior Member
Join Date: Jan 2008
Posts: 154
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Re: Message Boards
How about a section where people can go to and just vent out their frustrations with this horrible cancer? A place where you can just scream, bit@@@, kick the walls, and basically just get things off of your chest. I hear that technique works very well for people who are stressed out. Maybe even make it so that members have to have a seperate password to access it? That way folks who don't want to read it or even the drive bye folks won't have to read it either.
Dunno.....just a suggestion!
Without making any changes at all I think that you and Christine have one of if not THE BEST site out here. It's an amazing site with some amazing people!
I'm proud to be a part of it!
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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07-30-2009, 11:54 AM
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#14
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Message Boards
Joe,
I noticed several months ago that I need to scroll horizontally to read some posts. Otherwise the text is off the monitor.
I always keep my favorites function open, which takes up part of the monitor, but this wasn't a problem in the past.
Posts are difficult to read when I have to keep on scrolling back and forth. In general, text is easier to read when the column length is shorter, as in newspaper columns.
I'm not sure why this started happening, and it doesn't appear that way for all the posts.
Thanks.
Joan
__________________
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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07-30-2009, 12:04 PM
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#15
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: Message Boards
Joan, I have the same problem. Thought it was just me.
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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07-30-2009, 06:45 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Message Boards
I thought some instructions on the Search function might be helpful. Giving examples and show how best to search for various things. One word search, phrase search, etc.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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07-30-2009, 06:55 PM
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#17
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: Message Boards
Joan, yes I have teh same problem as well. having to scoll back and forth and yes it is very difficult these posts as I lose track of where I am.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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