HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 11-28-2011, 09:24 PM   #1
candlegranny
Senior Member
 
candlegranny's Avatar
 
Join Date: Feb 2010
Posts: 151
Vaccine Clinical Trial, may not be able to go

i am so torn, I have an appt thursday dec 1 to go to john hopkins for a consultation for breast cancer vaccine clinical trial. I am not sure I can go thru with it.
The trial will require me to go to baltimore for 8 days every 4 weeks for treatments some lasting 4 hours while others are only 30 minutes. the trip is a airplane ride. i will have to be away from home for 8 days and in a hotel. I have my mother living with me, she has for 4 yrs she has alzheimers and has gotten far worse in the last 6 months. I also have custody of 2 grandkids 12 and 7 yrs old. i have a wonderful husband and hi support is priceless but I am getting concerned about the time away from home this will require. I live close to louisville ky..i wish they had something at Vanderbuilt in Nashville or the John Brown cancer center in Louisville.
i am afraid i am selling myself short by not going thru this trial that i am qualified for but ther is the family obligation. I could take my mom with me but what would we do for 8 days in a hotel room and i am not one to take mom and roam the streets of a strange city. I am just in a dilema. I want to get the vaccine but just not sure this is the right time. I have a 2nd cousin that lives in baltimore and we could stay wiht her..but she is in california right now with her daughter and will be there until 1 march 2012. Her daughter is a breast cancer survivor but jsut has a re-occurrence in her bones. that is why her mom is there for 6 months. Please share your feelings on this situation I am in... thanks! Bonita
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
candlegranny is offline   Reply With Quote
Old 11-28-2011, 11:20 PM   #2
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Vaccine Clinical Trial, may not be able to go

Bonita,

Is the trial a double blind? Can you be sure that you will be getting the vaccine that you want?

Since you are currently NED - considering all the factors, perhaps you can wait for the vaccine to get approved? (Let others be the guenea pig or find a trial near you?
__________________
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
Jackie07 is offline   Reply With Quote
Old 11-29-2011, 12:39 AM   #3
Trish
Senior Member
 
Trish's Avatar
 
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
Re: Vaccine Clinical Trial, may not be able to go

Bonita, you are an extraordinary person to be such a good carer to your extended family. Jackie's point was a good one. If you were to sacrifice so much to the trial you would want to be sure you are getting the vaccine. Is there a possibility of deferring your enrollment until you have the family support available in Baltimore in March? My very best wishes with your decision and again you have my warmest admiration.
Trish
Trish is offline   Reply With Quote
Old 11-29-2011, 04:45 AM   #4
Ellie F
Senior Member
 
Join Date: Feb 2009
Posts: 1,526
Re: Vaccine Clinical Trial, may not be able to go

Hi
I wondered the same as Jackie and Trish.What I wasn't sure of was how many doses of the vaccine you needed? Most seem to be over a period of months which makes things difficult.
May I ask why you picked this particular vaccine trial? I wondered if you had considered others like the one Steph is on at Seattle.
Ellie
Ellie F is offline   Reply With Quote
Old 11-29-2011, 06:37 AM   #5
candlegranny
Senior Member
 
candlegranny's Avatar
 
Join Date: Feb 2010
Posts: 151
Re: Vaccine Clinical Trial, may not be able to go

I was told I will be getting vaccine, no placebo stuff. one of our sisters on here went to this trial. I talked to the doctor by phone . she said the trial was in phase 2 and very small only 20 participants.
I picked this trial cause I was off herceptin more than 3 months and NED and qualified. iti s over a period of 4 months i think. I would have to go for 8 days in a row, then once a week for 4 weeks then back again for the 8 days. this is over a 4 month period.
My husband and family members are concerned about what will be put into me (cancer cells ) i dont think that is the case.. but still concerned. when i asked my doctor about clinical trials at the end of my treatment, his response was "we gave you the standard treatment and it worked, what are you looking to prove with clinical trials?" he didnt think i needed anything further. then we started hearing about the vaccine. I guess I just wanted to do anything I could to prevent it coming back (My oncologist said the chances of return is 50%) I can deal with that..I will be on the side of the good 50%! that is better than 85%-15%. when you feel good, and look good it is easy to forget momentarily what could be lurking in the back ground. I jsut wanted to do something to try to help me fend off the cancer should it ever try to return. alot of mixed feelings over clinical trials. Now my sitter situaton for thursday has come up with some obstacles and I just wonder if this could be a sign that i need to just stay home and use the plane tickets we bought to go on a "fun weekend" somewhere in the future. Sorry to ramble on but I think, more than anyone, you guys can identify with my anxiety over this. I am thankful for all the positives I have. alot of clinical trials are taken advantage of when there is no other alternative. this vaccine trial is different, but scary too. My husband agrees with some of you - let others be the guinea pig. I value all your thoughts and input. have to decide something to day so my husband can take off work or i can cancel airline tickets... thanks!! Bonita
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
candlegranny is offline   Reply With Quote
Old 11-29-2011, 07:00 AM   #6
candlegranny
Senior Member
 
candlegranny's Avatar
 
Join Date: Feb 2010
Posts: 151
Re: Vaccine Clinical Trial, may not be able to go

Baltimore was closer to me than Seattle. I live in ky so when southwest has sales i can fly to baltimore for $59 one way which is great. but with my family situation at home I am seeing that the comittment may be too much and to find quality dependable care in my absence is not always easy.
One of our sisters on here did this trial but when i talked to her she was only a short distance from baltimore and was able to drive in for her treatments. I could do that at vanderbuilt in nashville. that is only 2 hours away but nothing available there as of yet.
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
candlegranny is offline   Reply With Quote
Old 11-29-2011, 11:00 AM   #7
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Re: Vaccine Clinical Trial, may not be able to go

I don' t know the rules of the trial you are considering, but I think you should talk to your own oncologist about your circumstances. Perhaps your oncologist can talk to the doctors a Johns Hopkins and see if they can work out something for you, so you won't have to travel or be away from your family so much.
Perhaps there will be trials available in your location in the future. You could ask your oncologist or the nearest research center about those things.
Good luck. Take good care of yourself.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 11-29-2011, 12:11 PM   #8
BonnieR
Senior Member
 
BonnieR's Avatar
 
Join Date: Jun 2007
Posts: 2,210
Re: Vaccine Clinical Trial, may not be able to go

My husband has a saying "sometimes the situation is smarter than we are". Meaning that things answer themselves, if we look closely. You seem to be getting alot of signs, or roadblocks, that are telling you something.
I admire your determination and dedication to taking advantage of all that is offered. But I agree with the others that it might be best to inquire about upcoming trials closer to home.
Keep the faith.
__________________
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
BonnieR is offline   Reply With Quote
Old 11-29-2011, 12:21 PM   #9
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Vaccine Clinical Trial, may not be able to go

Dear Bonita -

You have my admiration with how much you have taken on to keep your family together and raised properly. It is added impetus for you wanting to do all you can to stay healthy and keep the cancer from coming back.

I really would offer the U of W trial that I am in for consideration.
http://depts.washington.edu/tumorvac...ntific_133.php

There are only three shots and you could fly in one day and leave the next. The final blood draw can be done at your own clinic at the one year mark.

I had my Informed Consent session, signed it, and had my physical while my vaccine was being sent up from the lab at the U of W Medical Center. So first appointment took less than the 4 hours they mention. You can have a morning appointment and be on a plane home in the afternoon.

The National Cancer Insitute helps find free or very reduced price lodging. Some of the ladies I met here even stayed at the Sheraton downtown at NO CHARGE.

So nothing like 8 days away from home and you have a wide choice of airlines.

Last week I was told there are still about 15 slots for the phase one that I am in. There are several patients starting in January, and that is counting those.
__________________
"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.
StephN is offline   Reply With Quote
Old 11-29-2011, 12:36 PM   #10
candlegranny
Senior Member
 
candlegranny's Avatar
 
Join Date: Feb 2010
Posts: 151
Re: Vaccine Clinical Trial, may not be able to go

oh Steph I will check into that for sure.. Bonnie, I was thinking the same thing. too many obstacles keep popping up. It all seemed doable 4 weeks ago when I inquired about this and now the doors are shutting it seems. Steph I will check into this for sure. it sounds like you get the vaccine at one time and then go for a year? the one in baltimore had so many follow ups and weekly herceptin treatments while getting the vaccine. I mean it sounds great and would be awesome if I lived closer and could drive in for a the weekly treatments. You ladie's have helped me jsut like I knew you would. No one on this earth knows how we feel but our sisters on this board. thank God for each of you and your thoughts, prayers and opinons. I will call today and cancel the plane tickets and the appt. I can use the ticket credit at another time and maybe even for my husband and I to go to seattle. we have several friends there with the military so lodging may not be a problem but even a night in the hotel sounds inviting. thanks again ladies. Bonita
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
candlegranny is offline   Reply With Quote
Old 11-29-2011, 02:30 PM   #11
Lauriesh
Senior Member
 
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
Re: Vaccine Clinical Trial, may not be able to go

Hi Bonita,
I had considered John Hopkins, but went with Univ. of Wash because of the time commitment. I have three kids at home, and knew I couldn't be gone that much.

I flew in on a Mon, had my appointment on tues, and flew out on Wed. This month I will fly out on a Tues, and fly back on Wed. I will have to go for 4 trips.

The ACS provides help with airfare and lodging, if you need it.

Laurie
Lauriesh is offline   Reply With Quote
Old 11-29-2011, 07:17 PM   #12
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Wink Re: Vaccine Clinical Trial, may not be able to go

Yes, Bonita, there are three vaccines taken one month apart. Then a blood draw and physical at the 4th month. So that makes 4 trips, however you only need to stay the one night if you want.

Get hold of Stephanie Parker, Research Coordinator at the Tumor Vaccine Group - sparker7@uw.edu

She will get you lined up. Keep me posted and keep asking questions.
__________________
"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.
StephN is offline   Reply With Quote
Old 11-30-2011, 08:28 AM   #13
snolan
Senior Member
 
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: Vaccine Clinical Trial, may not be able to go

I had the same problem I would have to fly to Houston stay 1 week then come back for 3 days once a month. Having young children and working full time I couldn't do the trial. It is very disapointing but I keep my eye out for other trials that I can do locally.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
snolan is offline   Reply With Quote
Old 01-15-2012, 08:14 AM   #14
JillaryJill
Senior Member
 
JillaryJill's Avatar
 
Join Date: Aug 2011
Posts: 271
Re: Vaccine Clinical Trial, may not be able to go

Bonita,

I just inquired about the John Hopkins trial last week and spoke with Maureen. I have an email into my onc and I will see what she says about the trial. My onc is at a large teaching hospital in Chicago and she is current on all the latest Her2 developments. The time commitment is huge and I live in Chicago, so flights, hotels, and I still work full time and carry the health insurance on the family so I too would be juggling a lot. Also there are 4 sets of scans involved with the trial, which does not set well with me either, but like you Stage IIIc is a scary place to be and I want to throw everything I can at this so I don't go Stage IV. I expect to hear from her this week. I read your post and could not believe the similarities in the way you feel and the way I feel about this trial. I just got done being a patient, and now would be a patient for another year.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
JillaryJill is offline   Reply With Quote
Old 01-15-2012, 04:51 PM   #15
candlegranny
Senior Member
 
candlegranny's Avatar
 
Join Date: Feb 2010
Posts: 151
Re: Vaccine Clinical Trial, may not be able to go

I heard if another vaccine trial in seattle I am checking Into. Travel is alot less time and you go 4 times I think then the booster. The trial in Baltimore is very I depth but I just can't be away from home for 8 days because one day is a 5 hr hercrptin treatment and next day is 15 minute appt to check the site. It would be awesome if we could do some of it at our own doctor and have the results sent to John Hopkins I asked about that and the foc in Baltimore said that could not be done. She says this trial is small. About. 20 people keep
In touch Jill. We need to talk! Bonita
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
candlegranny is offline   Reply With Quote
Old 01-17-2012, 05:02 PM   #16
Unregistered
Guest
 
Posts: n/a
Re: Vaccine Clinical Trial, may not be able to go

Bonita,

I am unclear from your signature whether you have metastatic disease. Was there actually cancer in your neck/lung? If so, I think it would be important to be on Herceptin. (I hope I am not out of line for suggesting this.) I would go for a second opinion at a major cancer center near you, and ask their advice about treatment and their thoughts on the vaccine trial. If you do have metastatic disease, maintenance Herceptin might be a surer route to keep the cancer at bay than a vaccine trial, and wouldn't require being away from home.

Good luck!


Jill
  Reply With Quote
Old 01-17-2012, 10:53 PM   #17
candlegranny
Senior Member
 
candlegranny's Avatar
 
Join Date: Feb 2010
Posts: 151
Re: Vaccine Clinical Trial, may not be able to go

my oncologist said it was a local metastesis since it was in 2 nodes in my clavical area on the same side as my diseased breast. he said it was on the other side it would have been mestatic because of the distance. not real sure about all that. the node involvement is what got me characterized as stage 3C, which is early stage, so i have been told. the spots on my lungs were 2 little spots 3 mm each maybe. they said they were too small to biopsy. my radiologist reviewed the scan and said that was where he radiated me so it was his opinion these were scars from radiation. my oncologist said he would agree with that. i go back in february for new PETscan. it will be 6 months after my last one. .i asked my oncologist to check me in 3 months he said no 6 months was fine. kind of bothered me to wait - we have good insurance and it would be covered but he said no. I am not sure if he said that cause i really didnt need a scan in 3 months or if he wanted me to have a good holiday before finding out if the spots on my lungs was growing. he did tell me it was 50 -50 chance of it coming back or not coming back. I am determined to be the 50 percent that beats this thing. I asked my oncologists about clinical trials after my treatments were all done. his reply was we gave you the standard treatment and it worked so what do you hope to prove with a trial. i find myself some days living a normal life....and loving it.. those are the days i forget about the cancer.
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
candlegranny is offline   Reply With Quote
Old 01-18-2012, 04:57 AM   #18
Lauriesh
Senior Member
 
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
Re: Vaccine Clinical Trial, may not be able to go

Hi Jill, I wanted to respond to your post, as I am stage 4 and did stop treatment to do the vaccine trial in Seattle. I had been NED for 8 months when I started the trial in Oct. 2011, but my dr made it very clear to me that he thought the cancer would come back.
I wanted to do something that could increase my chances of possibly beating this. So , yes it was a risk to stop treatment, but I thought it was a risk worth taking.
The good news is that I had a Pet scan last Thur, and I am still NED, and I will be starting treatment again (Herceptin and Tykerb) in 2 weeks.
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
Lauriesh is offline   Reply With Quote
Old 01-18-2012, 07:51 AM   #19
JillaryJill
Senior Member
 
JillaryJill's Avatar
 
Join Date: Aug 2011
Posts: 271
Re: Vaccine Clinical Trial, may not be able to go

Bonita,

I am Stage IIIc. Just completed my year of Herceptin in December 2011. I am feeling insecure because my treatment is over. I was aggressive as I could be, bilateral mastectomy, 6 rounds of TCH and a year of Herceptin.

My onc said no the the trial. She responded in an email but did not elaborate. What I am trying to accomplish is to not ever progress to Stage IV.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
JillaryJill is offline   Reply With Quote
Old 01-18-2012, 12:28 PM   #20
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Vaccine Clinical Trial, may not be able to go

Jill - I find it strange your doctor would tell YOU what to do. Seems to me it should be YOUR call whether or not you want to participate in a vaccine trial.

I would ask for onc's reasons for recommending against.

LAURIE - so you are finished with travel to Seattle? Sorry we missed each other between our holiday and other schedules. I had my big blood draw last week and my physical. All is well. I have no side effects from the vaccine and ampligen that I can tell.

Glad to hear you had a good PET and NED is still sitting with you.

Doreen said that she will let me know in a month or so whether I had an immune response. (Once they analyze my blood samples.)
__________________
"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.
StephN is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 02:38 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter