HonCode

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

Reply
 
Thread Tools Display Modes
Old 06-24-2009, 06:20 AM   #1
Tom
Senior Member
 
Tom's Avatar
 
Join Date: Sep 2005
Posts: 290
Thumbs up Out of the Loop...Not So Fast

So I thought I was safe on the sidelines of the breast cancer war. Ha! So much for the "vacation". I stopped a week ago to visit a couple that I have been friends with since the 70's. I hadn't seen them in years. As I sat chatting with my transplanted friends from communist Hungary, the woman calmly announces to me that she has breast cancer. I was stunned. She asked me if I knew anything about it, and I said that I did at one time but hadn't been keeping up on it like I used to when Mom was battling it. We discussed her case a little, and I offered to go with her to see a surgeon a discuss a plan of treatment. Little did I know what I was in for.

We travelled to the University of Pennsylvania, specifically the new Rowan Breast Center. I had not been anywhere near the U of P since Mom got her wings, and I felt my anxiety going up the closer we got. The new center is nothing short of spectacular. It is well thought out and even has parking in the same building. Imagine that. In Philadelphia, parking in the same county as the destination is a rare thing. This facility is nothing short of a state-of-the art, one stop diagnostics and treatment center for breast cancer. Women in this area will benefit greatly from this place.

The best was yet to come. We sat for quite a while in a spacious waiting room, and then were summoned to see the doctor. He went over the pathology with my friend, who after all these years still struggles a little with the many oddball subtlties of the English language. He told her that she had an unusal type of breast cancer. He calmly told her that her cancer was known as a HER2+3, Er-/Pr- cell type. My mouth dropped open. You have got to be kidding me, I thought silently. Some weird thoughts raced through my head, including Al Pacino's line in Godfather III where he says, "Just when I thought I was out, they pull me back in".

The lengthy conversation that followed with this remarkable man, was nothing short of fascinating to me. I suspect that the things I learned next are nothing new to all of you guys, as you have all been up to date on the latest toys and strategies for battling the Beast. But the things I heard over the next thirty minutes were stunning.

The surgeon's name is Dr. Brian Czerniecki, and he is running the clinical trials on a vaccine for early stage HER2. The wonderful conversation I had with this unassuming, arrogance-free physician left me ever so hopeful for my friend as well as all of you. Despite his casual bedside manner and willingness to go way beyond the extra mile in explaining these complex details to his patients, this man is clearly passionate and totally obsessed with succesfully developing an effective vaccine for HER2 cancers. From what I have heard so far, he and his colleauges are well on their way to making history in the treatment of breast cancer.

Patients in the trial undergo plasmapheresis at the beginning of the treatment, having their own immune cells sensitized to produce an immune response to HER2. After the initial series of administrations of the tailored vaccine, the patient undergoes their surgery, and is susequently followed up for an extended period of time.

I won't go into the details of my friend's plan until she has decided exactly what route she is comfortable with and gives me the OK to openly discuss her case on this forum. I will simply say that another little miracle took place yesterday, and gave me one of the small moments of the happiness I have missed since Mom passed away. I will try to write when I can and let you know what's going on. Take care all, and remember that I think (and worry) about all of you on this website every day.

Sincerely,
Tom
Tom is offline   Reply With Quote
Old 06-24-2009, 06:32 AM   #2
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Thanks for sharing the amazing story, Tom. Do keep us updated with the Her-2 journey of your friend. Perhaps she will join the board sometime soon?
__________________
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 06-24-2009, 06:40 AM   #3
schoolteacher
Senior Member
 
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
Tom,

You are a very thoughful person to accompany your friends to their doctor's appointment. I did not join this board until February 2008, so I don't know anything about your mom. You sound like a wonderful and caring son.

The vaccine trial sounds really interesting. Please let us know about the treatment plan she decides to take. She will be in my prayers.

God Bless You for helping them.

Amelia
schoolteacher is offline   Reply With Quote
Old 06-24-2009, 09:02 AM   #4
RhondaH
Senior Member
 
RhondaH's Avatar
 
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
Smile Tom old friend...

your friend is LUCKY (to say the least) to have someone as supportive and knowledgeable as you in her corner. I strongly feel your mother guided you to her. I know life goes on after cancer, but please just pop in to say "Hi". HUGE hugs and I'm tickled about hearing from you again (though it stinks your friend is going through this). Take care and God bless.
__________________
Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
RhondaH is offline   Reply With Quote
Old 06-24-2009, 02:17 PM   #5
suzan w
Senior Member
 
suzan w's Avatar
 
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
Good to "see" you again, Tom! I well remember you and your Mom. How lucky your friend is to have you to confide in for support. After all, support is the key when we are feeling crazy with this disease.
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
suzan w is offline   Reply With Quote
Old 06-24-2009, 04:12 PM   #6
Rich66
Senior Member
 
Rich66's Avatar
 
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
Tom,
If the trial is public, please post info when you get a minute. Here is an interview from '05 which sounds related:
http://www.oncolink.org/types/articl...&ss=36&id=9500

..and a follow up on pubmed from '08:
1: Immunol Rev. 2008 Apr;222:256-76. Links
Reengineering dendritic cell-based anti-cancer vaccines.

Koski GK, Cohen PA, Roses RE, Xu S, Czerniecki BJ.
Department of Immunology, Center for Surgery Research, Lerner Research Institute, Cleveland Clinic, Cleveland, OH 44195, USA.
Despite initial enthusiasm, dendritic cell (DC)-based anti-cancer vaccines have yet to live up to their promise as one of the best hopes for generating effective anti-tumor immunity. One of the principal reasons for the generally disappointing results achieved thus far could be that the full potential of DCs has not been effectively exploited. Here, we argue that dramatic improvements in vaccine efficacy will probably require a careful re-evaluation of current vaccine design. The formulation of new strategies must take into account the natural history of DCs, particularly their role in helping the immune system deal with infection. Equally critical is the emerging importance of soluble factors, notably interleukin-12, in modulating the quality of immune responses. Vaccines should also be designed to recruit helper T cells and antibody-producing B cells rather than simply cytotoxic T lymphocytes. Finally, the judicious selection of tumor, target antigen, and disease stage best suited for treatment should serve as the foundation of trial designs. Our discussion addresses a recent clinical vaccine trial to treat early breast cancer, where many elements of this new strategy were put into practice.
PMID: 18364007 [PubMed - indexed for MEDLINE]
Rich66 is offline   Reply With Quote
Old 06-24-2009, 10:28 PM   #7
Tom
Senior Member
 
Tom's Avatar
 
Join Date: Sep 2005
Posts: 290
Rich,

Here's the link to the current HER2 vaccine clinical trial at U of P.

http://clinicaltrials.gov/ct2/show/N...3=NA%3AUS%3APA
Tom is offline   Reply With Quote
Old 06-24-2009, 10:35 PM   #8
Tom
Senior Member
 
Tom's Avatar
 
Join Date: Sep 2005
Posts: 290
Here is the NCI link as well.

http://www.cancer.gov/clinicaltrials/UPCC-15107
Tom is offline   Reply With Quote
Old 06-25-2009, 01:06 AM   #9
Believe51
Senior Member
 
Believe51's Avatar
 
Join Date: Jun 2007
Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Thumbs up

Tom, I am so sorry that someone else whom you love is battling this disease. The other part of me is so happy for them, that they have someone like you in there lives. Thank you for sharing your miracle since we all celebrate besides one another when they happen. And they do. You have also shared so much hope and inspiration with us all and you can never get enough of that. We have never spoke before and I am looking forward to cyberally sending prayers and positive thoughts to your friends and you. Normally it is a newbie that I say "I am sorry we have to meet like this", tonight I say that to myself. "I am so sorry that I have to met 'you' like this." As always, I am so happy that we have a place to do this. Take care Tom and again, thank you sincerely.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
Believe51 is offline   Reply With Quote
Reply


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 04:59 PM.


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