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07-29-2006, 12:19 PM
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#1
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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It's Getting Closer
Well, I had a visit with the oncs office that will be supplying me the Tykerb.
The co-ordinator had her "telephone interview" last week with the Glaxo people and I went in on Thursday and signed my consent form - Yippeeeee
I had everything explained to me in depth, had my blood work done and had an Ecocardiogram on Friday and am scheduled for a CT on Monday. I will meet with them again on Wednesday and hopefully they will have the drug by Thursday.
I can't believe I can be so anxious to actully begin on Chemo AGAIN but of course after 6 weeks off of chemo and progressing tumors, I see why.
I do not forsee any reason at this time that the Glaxo people will not allow me to have the compassionate use for this but until I actually receive the drug, I am still keeping my fingers crossed.
I am sure that those of you out there that are working with an office that is trying to obtain qualification for the EAP, will be seeing results soon.
Will let everyone know when I start.
Good luck to everyone.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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07-29-2006, 12:45 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Irene
I am so excited and happy for you. Keep us in the loop (and let us know when your vacation starts so we don't worry about you). I am interested in how Tykerb works in general and how it will make you NED!
You are in my thoughts.
Kindest regards
Becky
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07-29-2006, 04:34 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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it is great that something is finally happening.
Good luck
Christine
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07-29-2006, 05:12 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dearest Irene,
Will keep you in my prayers and wishing you all the best!
Jean
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07-29-2006, 05:32 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Finally
Dear Irene,
I'm so glad to see that you finally have some forward movement on this. I hope and pray that this will be one perfect treatment for you - one that will set you back on track for a long time.
Best of luck to you, thanks for keeping us updated.
chris
__________________
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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07-29-2006, 07:41 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Irene, It must be a relief to finally get the ok. I am so happy for you. Please keep us updated as I know we are all excited to see how fast this tykerb takes to kick your tumors behind. I have a good feeling about this drug. Many prayers that this one will do it for you. Hang in there...it won't be long till your on the road to NED again.
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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07-29-2006, 07:51 PM
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#7
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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I am so happy for you.
Hugs.
Karen
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07-29-2006, 08:02 PM
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#8
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Best of luck to you. BB
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07-30-2006, 07:50 AM
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#9
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Irene,
I'm glad that you have gotten the go ahead to receive tylkerb. Please keep us informed on your progress as I'm sure there are many of us on this board who may one day be going down the same path. My thoughts and prayers are with you.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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07-31-2006, 02:30 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Tykerb
Hi Irene, I am so happy for you. I just had a PET scan that came back with new signs of possible metastesis to nodes on my right hilar region and paratreacheal region. I have been on Herceptin for 2 1/2 years and Avastin for 1 year. I have asked my Onc for options including Tykerb and am awaiting news from him. He has a call into UCLA to see where to go from here. It is quite scary after I thought I was doing so well. I have IBC and have been through chemo twice, radiation twice and will see what happens next. I have heard great things about Tykerb. I wish you the best, Vickie H
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07-31-2006, 04:51 PM
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#11
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Soon I hope
Thank you all for your constant support through all of this. I am almost afraid to get too confident since I am not on it yet....but
I did have the encocardiogram last Friday (all was good) and I am having a CT scan tomorrow and that should be all for now. My oncs office has not received the drug yet but hoping to this week (I call and check with them every day)
I was not checked specifically for Her1 although I know that Tykerb is suppose to target those also.
I am not quite sure when this office applied for the EAP program but am assuming it was as soon as it was opened up for compassionate use which I think was a couple of months ago. I can find out when I go this Thursday. and yes Lisa, they have had paperwork going back and forth for a while (this is why I am so anxious since it seems to go on forever) Everytime I call the co-ordinator there is another piece of paper she has to send. I will meet with the co-ordinator in the office on Thursday and if they have all of my test results back, they have to fax over to GSK and have me documented with tumor size, then and only then can I start on the chemos. This week is 7 weeks without chemo for me so you can just imagine how I am bouncing off the walls (and I am a pretty patient person) . I can only imagine how big my tumors must be by now.
I think that if you are approved for the EAP program you will be taking Tykerb with Xeloda. You will bet both on this program. The Tykerb with or without Herceptin I believe is a trial being conducted.
I will certainly let everyone know the outcome of this week and wish those of you waiting the best of luck and speedy acceptance.
Take Care
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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07-31-2006, 05:46 PM
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#12
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Heres the latest from GSK:
Hi Joe,
The latest US update is that we have 9 sites active and 10 patients enrolled.
As you know sometimes site approval is longer than 2 weeks as it takes a while for contract negotiations, reg doc submissions and IRB approvals.
For patients who are being screened for the study, it could take up to 2 weeks, depending on what testing needs to be done for the patient and the time frame in which these tests can be scheduled.
All patients must have progressive disease with scans done within 2 weeks of study entry to confirm this progression, as well as an ECHO or MUGA scan to confirm that the subject has adequate cardiac function. If these can be done, and results gotten back rather quickly at an institution, the patient could probably be treated in less than 2 weeks. If not, then it could be up to 2 weeks from consent to dosing.
Hope this answers your questions.
Thanks and take care.
Cathy
__________________
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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07-31-2006, 06:07 PM
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#13
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Scan-itis
Dear Irene -
I have been following your posts on trying to get Tykerb. And you always mention that with no chemo those tumors must be taking off. This is an absolutely normal and reasonable fear. (Most of us think that with every little new ache and pain anyway ...)
Think of the half life of those drugs you are just off of and know that they have been there attacking cells. We know they were not reversing the progress, but you may be somewhat stable right now. That is my hope and prayer for you.
Can't remember if you do tumor markers or not, but my message is that I am thinking good thoughts that your scans will only show the progression necessary to get you on the new drug.
Make sure you have lots of "comfort food" since you can't eat before the scans!
__________________
"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.
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07-31-2006, 09:16 PM
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#14
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Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
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Joe, correct me if I am wrong however, a lot of the patients seeking Tykerb are looking for a "salvage" regime so isn't 2 weeks pushing the elvelope just a little?Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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08-01-2006, 04:15 PM
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#15
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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To Sherry
Yipeee for you Sherry and much good luck. Let me know when you get started.
I am still waiting but getting closer.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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08-02-2006, 04:53 AM
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#16
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I am so happy for you Irene. I sure hope it comes through. I am frustrated thinking of those that need it and it is taking so long to get it. My doctor applied June 12th and the IRB is working on it. I need it but not as bad as some on this board. That is almost two months now and it doesn't look like it is coming in the next couple of weeks. It may not be until Sept. Now, I can see why some people don't live long enough to get these drugs. Sorry, if I sound negative but never realized how long these drugs really take to come through. The last I was told last week is that the IRB is sitting up protocal on how it is to be given. I have had a muga but no cat scan or signed any forms. Mine are skin mets and therefore do not show on any scans or markers. It is still very active disease. I know my oncologist is doing all he can and he will start screaming pretty soon if need be. For those that don't have an agressive doctor I feel bad. We have to be our own advocate. Wishing you well Irene and keep us updated as I know you have. hugs, Sandy
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08-01-2006, 05:47 AM
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#17
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Senior Member
Join Date: Sep 2005
Location: Wellsburg, WV
Posts: 26
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Yea
Good LUck!!!! I go today to start the process.
sherry
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