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03-07-2008, 03:02 PM
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#1
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Senior Member
Join Date: Jan 2008
Posts: 154
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Just checking in!
Hi folks, its been awhile since I posted or interacted here, so I just thought that I would stop and say hello, see whats going on here, and give you an update on myself.
Wull, where to start.........
I found out that my particular case is indeed a weird one, and had really stumped the 4 oncologists in the office that I go to! My main oncologist has spent many hours doing research, and talking to cancer centers all over the world on if I should be treated. It is running at 50/50.
Cleveland Clinic, MDAnderson, etc, says not to treat due to the size of tumor. Another hospital in West Virgina, one in Brussels, and one in Holland told him to treat me.
So, he suggested in doing the OncotypeDX test to help me decide if I wanted to go thru treatment. It was expected that it would come back a bit on the high side because of the her2.
My score came back at a 52 with a distant recurrance at 10 years at 34%!!!
He told me that he has never seen a score that high, most people don't even score that close to 50, and the doctor at Genomic called him and said this was off the charts. (I've been a difficult person all of my life, just ask my wife!)
I went in this am to see him, and he now strongly suggested that I do the chemo dance with some Herceptin thrown in. He told me that at first he thought I only needed Tamoxifin, but now after talking to other experts , because of my age,and now this Oncotype score, I should do the chemo.
I agreed with him, and I start next Friday. I also have a bone scan on Tuesday, and a full body CT scan on March 19th.The main problem is that nobody seeme to know because there is no data on a 40 year old male with breast cancer.
So now I guess I get to be a genuine crash test dummy!
Oh yeah, I almost forgot....I also see the neurologist on Thursday to find out the results of my spinal tap, clavical MRI, and blood work. I guess at this point MS is pretty minor! I still don't see any symptoms of that and I'm hoping it is a B12 thing.
Does anyone know when the swelling and pain from the node removal goes away in your arm? It's still so swollen that I can't wear a long sleeve shirt. I forgot to even ask the doc today about that. He is very shaky and nervous when he talks with me so he prolly didn't even notice. Very nice guy, but I'm 6'5 and 300 pounds, and he is about 4 foot and 80 pounds soaking wet, so I think he is a bit shy and intimidated around me. I'm not mean or anything, heck I'm prolly one of the nicest ogre's he has ever met. So I dunno, maybe it's me. Would it be in bad taste to give him a deodorant gift box set for his wet armpits next Friday?
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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03-07-2008, 07:02 PM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Duga
I like your attitude...keep it up, you will do fine...probably a good thing they are doing the chemo with the Herceptin....you are pulling out all the stops to kick this in the butt right from the start, we are hear for you with any questions you may have.....
P.S. Gift wrap the box for the doc so he can see your sensitive side!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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03-07-2008, 08:44 PM
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#3
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Duga,
Thank you for making me feel better - I finally found someone with a higher Oncotype Score than me (mine was 44).
I am impressed at the range of hospitals you sought opinions from. Out of curiosity, did you personally go to the European hospitals for evaluation, or did you just have your case reviewed on paper? Was there a reason you chose those particular hospitals?
Best of luck to you with your treatment,
Hopeful
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03-07-2008, 10:00 PM
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#4
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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As you know, your treatment is up to you. If it were me I'd do the chemo. Your stats are similiar to mine except your tumor is smaller, but you are younger and male. I'm guessing there's not a whole lot of research out there for you.
Sorry about the arm. Recently, they do a sentinel node biopsy. Take out the first 2 that the nuclear dye light up. Reduces the side effect you speak of. They need to order you a cuff for your arm to control the swelling and pain.
It's give your onc a break month. Don't give him the toiletries.
Best of luck, BB
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03-08-2008, 03:55 AM
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#5
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Hi Duga - good to hear from you. Lots of decisions eh?
I'm glad you are having the chemo - I was diagnosed with DCIS back in 2003 - Grade 3 with comedo necrosis - and a 2nd opinion I sought recently said I should have been given chemo back then - which I wish I had - as the BC came back - this time Stage 4 Her2 - but who knows - cant change the past.
Anyways - hope all goes well with your treatment. I wear a compression sleeve for lymphodoema to my left arm and see a physio for ongoing asssessment.
All the best
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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03-08-2008, 03:51 PM
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#6
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Senior Member
Join Date: Jan 2008
Posts: 154
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Hi ladies
Hopeful, I didn't choose those locations for opinions, my oncologist did. He has done all of the legwork for me, so now I don't see a reason for me to go searching for answers. In fact, I have an email that he forwarded to me from the doctor who was the main investigator of the HERA trial that approved Herceptin.
Actually, I'll cut and paste it......
The names of been changed to protect the guilty
Hi, just want to farward email response from Dr Leyland, main investigator of HERA trial which approved Herceptin in adjuvant setting. Pretty much the same response i got from other experts. Dr xxxxxxx. ----- Original Message ----- From: xxxxxxx@aol.com To: xxxxxxx@rrbiznet.com Sent: Tuesday, February 12, 2008 5:45 PM Subject: Re: advise on a difficult case
Very, very difficult, Noman. Even the more aggressive are using 5mm as a cut-off. Small, node negative lesions, as you know, are not usually treated with chemo. I would run adjuvant-on-line and present the data and the risks to the patient. I would also suggest Oncotype. Choices range from Tam only/ chemo followed by Tam/ chemo + Herceptin (eg TCH) followed by Tam. To me,it really depends on how agggressive the path is/ LVI, etc Warmest, B In a message dated 2/12/2008 3:39:16 P.M. Eastern Standard Time, XXXXXXX@rrbiznet.com writes:Hi, I need your advise in a difficult case,
39 y/o male with 2.5mm poorly diff adeno with DCIS on Rt mastectomy, 17 lymph nodes negative, ER/PR and her2 neu strongly positive, Fish 4.5 . I confirmed with pathologist her2 neu was done on invasive tumor. I would really appreciate your comment. thanks, Dr Noman xxxxxxxxx
Bev, I wasn't able to have the sentinal lymph node surgery. When I had the masectomy, they did a freeze biopsy on the tumor to see if any infiltrating cells were found. None were found so he didn't take my nodes. A week later the full pathology report came back and said that I did have some infiltrating cells, and a month later I went back in for a node removal Hermiracles, That is exactly why my wife and I chose to do the chemo now. If it comes back I don't want to sit around beating myself up with the could have should have thing.
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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