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12-05-2010, 11:32 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 556
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Anybody did University of Washington adoptive T cell therapy?
Is there anybody who participated in the adoptive T cell therapy clinical trial from University of Washington?
I would really appreciate if somebody can share their experiences and how they are doing now.
Thanks,
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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12-05-2010, 12:55 PM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Anybody did University of Washington adoptive T cell therapy?
I think this is the one that Courtney L is doing.I'm sure she will chime in soon with lots of information. She is such an inspiration and always happy to share her experiences.
Ellie
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12-07-2010, 12:53 PM
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#3
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: Anybody did University of Washington adoptive T cell therapy?
Hi Julie - Yes I am currently finishing up this trial. I go for my last booster vaccine shot in January.
I am feeling great physically (with a little lower back pain) but how the trial is working against my disease is a bit of a mystery. Going into the trial in May of this year I had bone-only disease. My PET right before the t-cell infusion showed bone-only disease as well. The whole time I've been on the trial, my CA 15-3 has been slowly creeping up - causing me some amount of worry. Dr. Salazar has told me that it is within the range that they see as being associated with inflammation from the vaccine, but they can't say for sure. I had my routine brain MRI in September which showed 7 new brain mets. I don't know if these were already seeded and started growing before the trial or if they developed while on the trial but before any immune response developed (if one has developed at all).
The interesting part is that when I went in for Gamma Knife treatment, several of the brain lesions had already shrunk by several millimeters. So I don't know if that was from the vaccine finally ramping up to cause an immune response or if it is from the Tykerb I started.
To add to the confusion, my follow-up PET in Seattle last month showed bone-only disease again (thank goodness) but the SUV uptake values were significantly higher and the report stated it was progression of disease. Dr. Salazar explained that there was no way for them to know whether it was actually bone met progression or if the increased SUV is a result of t-cell activity in those areas. Meanwhile my tumor markers are climbing upwards again.
Here is what I think is going on. When I had brain mets the last time, my tumor markers were normal. So I don't think the spike is being caused by those (which have now been treated). I also don't have the crazy bone pain that I had with the initial bone mets. They were incredibly painful almost all of the time. This time, I have a dull ache in my pelvis and sometimes in my sternum (site of mets). However, this is also where t-cells are produced (in the marrow in the pelvis) and processed (in the thymus under the sternum). So I like to think that my immune system has now ramped up and is doing its thing. I've read that CA 15-3 is also a measure of inflammation and that could be the reason for the spike (mine is now at about 60, normal is below 30).
Anecdotal, I was talking to a non-HER2 stage IV BC friend who went through a vaccine trial and also said that her pelvis lit up on the PET even though she never had any mets there - it was t-cell activity for her too. And she also said that it took about 6 months for the vaccine to actually mount a response and start causing disease regression.
So now I'm in watch and wait mode. My regular onc is switching me over to Denosumab (instead of Zometa) and we are just going to see where I'm at in a few months. I'll scan my brain in January and probably do another PET in February. In the meantime, I'm trying to not get too worked up about tumor markers and am embracing the fact that physically, I feel great. I just ran my first race (a Turkey Trot) over Thanksgiving and I did the Alcatraz Challenge swim this past July - can't ask for more than that!
If you'd like to chat more about the trial, please feel free to pm me for my phone number and email address. I'd be happy to share more with you.
Good luck!
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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12-07-2010, 10:26 PM
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#4
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Senior Member
Join Date: Apr 2010
Posts: 129
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Re: Anybody did University of Washington adoptive T cell therapy?
Thanks for the latest info Courtney!
Julie - I too am trying to get into this trial. I hope to start in early February if I qualify.
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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12-08-2010, 04:13 AM
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#5
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Anybody did University of Washington adoptive T cell therapy?
Deena
I have also looked at this trial even though it means a journey across the big pond.My onc was told that you needed confirmed mets of greater than 1 cm so they could measure/evaluate the response? Is this the case for you?
Ellie
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12-08-2010, 11:49 AM
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#6
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: Anybody did University of Washington adoptive T cell therapy?
Just to clarify - there are several HER2 vaccine trials at the University of Washington. The one I did involves infusions of t-cells in addition to the vaccine injections. For this trial (see the link in my signature), I do believe you have to have measurable disease. For the trial that is vaccine only, I do not believe this is the case.
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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12-08-2010, 12:14 PM
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#7
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Anybody did University of Washington adoptive T cell therapy?
Thanks for clarifying Courtney. I notice there are 2 vaccines that use T-cells. To be eligible for the first T-cell trial you have to have already had a vaccine approved by the U of Washington. The second trial I believe is yours but as you say you need measurable disease.
I sincerely hope they will expand their program in the near future as I believe it offers hope for a 'cure'for us all. Waking up the immune system so it can do it's job well again must be the way forward!!
Cheers
Ellie
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12-08-2010, 04:02 PM
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#8
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Senior Member
Join Date: Apr 2010
Posts: 129
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Re: Anybody did University of Washington adoptive T cell therapy?
Ellie - I have the paperwork with the requirements of the study I am trying to get into. Courtney is right, in this study, I will only get the vaccine, not the Tcell infusions. I wish!! For this Phase II study, you have to have originally been diagnosed with Stage IIIb, IIIC or IV, and be NED or with bone only disease at time of entering the trial. I just read through all of the requirements, and I am pretty sure I will qualify after I finish rads. Unfortunately, the doctor who qualified people for the trial will not even look at my file until I finish radiation. I can't start the trial until 30 days after radiation is finished.
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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12-09-2010, 03:25 AM
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#9
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Anybody did University of Washington adoptive T cell therapy?
Really hope you get into the trial. It was the t-cell component that confused me!! (not hard after chemo) At least you will get a vaccine which is really positive and quite a few women on the board have had a lot of success with it. I will keep my fingers tightly crossed for you.
Ellie
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12-09-2010, 10:18 AM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Anybody did University of Washington adoptive T cell therapy?
I have the paperwork for this trial as well, and will probably be moving forward with it after a brain MRI the middle of January...
It sounds like a pretty good one.
__________________
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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12-11-2010, 12:33 PM
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#11
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Senior Member
Join Date: Sep 2005
Posts: 556
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Re: Anybody did University of Washington adoptive T cell therapy?
Courtney,
Thank you very much for a detailed message. I hope this vaciine and T cell therapy will work well and give us hope for the future.
Thanks,
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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12-19-2010, 12:07 AM
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#12
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Senior Member
Join Date: Apr 2010
Posts: 129
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Re: Anybody did University of Washington adoptive T cell therapy?
I found out yesterday that I am officially in the trial!! I start January 13th!
Courtney - When are you going in January for your last vaccine? Wouldn't it be funny if we were there at the same time?
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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12-19-2010, 03:03 AM
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#13
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Anybody did University of Washington adoptive T cell therapy?
DeenaH,
Congratulations on getting in the trial so quickly...that's great! You sure are focused and know how to get it done! You go girl. Woo hoo.
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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12-20-2010, 10:00 AM
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#14
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Anybody did University of Washington adoptive T cell therapy?
Deena H,
Glad you have gotten into the trial. I am thinking about applying also.
Amelia
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12-20-2010, 10:09 AM
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#15
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Anybody did University of Washington adoptive T cell therapy?
Congratulations, I really hope this is a big success for you.
Ellie
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12-20-2010, 12:40 PM
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#16
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Anybody did University of Washington adoptive T cell therapy?
Julie -
Have you already done this vaccine trial? I am a little confused about your status.
Or was it another vaccine trial you participated in a few years back?
__________________
"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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12-20-2010, 02:56 PM
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#17
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Senior Member
Join Date: Sep 2005
Posts: 556
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Re: Anybody did University of Washington adoptive T cell therapy?
Hi Steph,
I took vaccine from UW 4 years ago. I didn't develop mesurable immune response at that time. Recently I participated in just the adoptive T cell therapy trial without the vaccine. This trial is for people who participated in the vaccine trial before.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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12-20-2010, 03:38 PM
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#18
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Anybody did University of Washington adoptive T cell therapy?
Thanks, Julie -
That helps. Are you currently NED?
Do you know if you have a measurable response this time with the adoptive T cell therapy?
I am not sure what they look for.
Asking the above questions as not sure why you would qualify for T-DM1 now. Is it a trial?
Sorry we did not get a chance to meet when you were making your trips to Seattle.
__________________
"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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