 |
01-20-2011, 09:58 PM
|
#1
|
|
Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
|
Any interest in a forum just for vaccine trials?
Someone mentioned this to me a long time ago and I think it's a great idea since there are so many interested in them. It would be so nice to be able to find everything related to vaccine trials in one place.
I think it would be nice so that women that enrolled in them long ago could check in and let us know how their doing--along with those that have just enrolled. There are so many posts about vaccines scattered around the board and it's hard to keep track of all of them. Becky, StephN, Christine...is this possible? How many others would be interested in a forum just for vaccines?
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.
|
|
|
|
01-20-2011, 10:20 PM
|
#2
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Re: Any interest in a forum just for vaccine trials?
Sounds senseable Cheele...yes
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
|
|
|
|
|
01-21-2011, 11:40 AM
|
#3
|
|
Senior Member
Join Date: Feb 2009
Posts: 1,526
|
Re: Any interest in a forum just for vaccine trials?
Brilliant idea. It would be so useful to know who was on what trials and who had participated in trials of vaccines in the past.Personal experience of vaccines is really useful to understand reactions and side effects.
Ellie
|
|
|
|
|
01-21-2011, 02:06 PM
|
#4
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Re: Any interest in a forum just for vaccine trials?
Great idea, but I think it should include all clinical trial information our members are participating in or planning.
|
|
|
|
|
01-21-2011, 03:45 PM
|
#5
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: Any interest in a forum just for vaccine trials?
Vaccine trials belongs to the board of 'Clinical trials', though discussions can appear anywhere such as New members, Her2, Tykerb,...etc.
This Board provides a very good 'search' function. It searches not only the keywords on the heading, but also the content of our postings.
The most 'relavent' threads appear first on the list of the search result. I would think it's more practical to remind members of the 'search' function than to expect people to follow more rules while they are under stress.
Just my 2 cents.
__________________
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
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
Vertigo
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.
"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
|
|
|
|
|
01-21-2011, 03:53 PM
|
#6
|
|
Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
|
Re: Any interest in a forum just for vaccine trials?
I will admit, I would do it in a flash but I am awaiting more adminstrative rights and I will review to get it put up at some point. Give us time and it will be done.
Right now we are also working on getting rid of the current spammed chat room and putting up a new secure one so we can use it for Topics of discussion with prearranged discussions/times like we did way back when.
Alaska Angel and TanyaRD have some great ideas to use the chat room for Targeted discussions on diet and nutrition and we could also schedule other topics and ideas - BUT, we have to get it up and running first. Adding a Vaccine Board here will probably be pretty easy once the admin rights are straightened out which should be soon.
Stay tuned
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
|
|
|
|
|
01-21-2011, 04:47 PM
|
#7
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Re: Any interest in a forum just for vaccine trials?
I think we can find a way to work in a more specific spot for this particular topic.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
|
|
|
|
|
01-22-2011, 03:11 PM
|
#8
|
|
Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
|
Re: Any interest in a forum just for vaccine trials?
Becky, no hurry...I can see you have your hands full at the moment. Getting the chat room back up is a good start. I am sure there are alot of good topic's we can discuss in there. AA and Tanya came up with a great idea. I also like Elaine's idea too...I totally agree with you!
As to the vaccine forum maybe it could be a specific spot like Steph said...make it a "sticky" at the top of the board? Depending on where a person is in their trt can dictate how much time they have on the board. I have just noticed this last yr or so we have had more talk about all the vaccine trials then ever before. Anyone else interested in this pls feel free to chime in.
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.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 07:32 AM.
|
Linear Mode
