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kimbly Joined: Feb 2008 Posts: 225 |
Apr 15, 2008 09:04 am
kimbly wrote:
I heard this on the news as well and wow this is cool. I knew about it from my onc. I am not sure if i am a high or moderate expressor. I need to ask for my pathology report. I start my herceptin only infusion this week. I have had it coupled with my chemo already but this is my herceptin only. I am excited that perhaps a vaccine is on the horizon!!! Dx 11/21/2007, IDC, 1cm, ER+/PR+, HER2+ |
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LizM Joined: Sep 2005 Posts: 1695 |
Apr 15, 2008 11:34 am
LizM wrote:
I am confused about what they mean by low expressing her2. I cannot find that answer anywhere. They do say that the low expressing her2 patients were not eligible for herceptin. I wonder if they mean those who are borderline by FISH and IHC or those who are negative by FISH (1.2 in my case but IHC 2+). If that is the case that would include a lot of women with breast cancer who are not currently eligible for herceptin. Anyone know??? |
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Joni0702 Joined: Nov 2007 Posts: 125 |
Apr 15, 2008 08:34 pm
Joni0702 wrote:
I have made inquiries about joining this study. Unfortunately, the study is not going on in too many centers. I will have to fly to the hospital and stay at a hotel several times at my expense and I may end up being one of the people who get the placebo! |
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henny Joined: Mar 2008 Posts: 59 |
Apr 15, 2008 09:33 pm
henny wrote:
Hi Joni,
Dx 3/2007, IDC, 1cm, Stage IIa, Grade 3, 1/15 nodes, ER-/PR-, HER2+ |
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suemed8749 Joined: Jan 2008 Posts: 440 |
Apr 16, 2008 01:13 am
suemed8749 wrote:
cp418: Thanks for this link. My FISH result is a ratio of 6.1. Does anybody know where this places me? Sue Dx 1/15/2008, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2+ |
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lkc Joined: Aug 2005 Posts: 1015 |
Apr 16, 2008 12:29 pm
lkc wrote:
Hi all, I am very interested in participating in this too. As a former clinical researcher I know this; The exact criteria for entrance into the study will be listed in the inclusion segment of the protocol( Ie; fish ratio, etc ) This is avialable once the study starts. Additonally potential study particpants can not meet any of the exclusion criteria( this basiclly states what disallows you from being in the study, ie: prohibited meds, certian other med conditions, etc.) Hope this helps!! Linda K
Dx 5/30/2005, Paget's, 1cm, Stage IIIb, Grade 2, 12/14 nodes, ER-/PR-, HER2+ |
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Margerie Joined: Dec 2005 Posts: 919 |
Apr 17, 2008 03:52 pm
Margerie wrote:
I found a thread about a new E75 study currently enrolling for Phase II over at Her2support.org Here is a link to the thread: http://her2support.org/vbulletin/showthread.php?t=33612 |
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LizM Joined: Sep 2005 Posts: 1695 |
Apr 17, 2008 04:30 pm
LizM wrote:
Here is a link where you can get info on the phase II trial which is still recruiting. I don't qualify because I am too far out from treatment but I wanted to see the eligibility requirements as far as her2 since I am considered her2 negative by FISH (1.2) but had an IHC result of 2+. Looks like I would qualify for the trial even though I am considered her2 negative if I had found out about it a year earlier. http://clinicaltrials.gov/ct2/show/NCT00524277?spons=%22Walter+Reed+Army+Medical+Center%22&spons_ex=Y&rank=28 |
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Joni0702 Joined: Nov 2007 Posts: 125 |
Apr 17, 2008 05:27 pm
Joni0702 wrote:
Many of the participating hospitals will only accept miliatary personnel in the trials, as they are military hospitals such as Walter Reed. There is one hospital in PA, but they are closing their trial. Another hospital on the E. Coast is part of Wake Forest Medical Center in NC. I understand that they are still accepting participants. You must be truly HER2+ to be accepted. |
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LizM Joined: Sep 2005 Posts: 1695 |
Apr 18, 2008 12:28 pm
LizM wrote:
Joni, how do you know you have to be truly her2+ to be accepted? Did you talked with someone? The reason I ask is because the eligibility criteria says an IHC of 1-3+ and/or FISH > 1.2. Right now if you are an IHC of 1+ or 2+ you are considered negative and are not offered Herceptin. The article that has been in the news this week indicates that those in the study with low expressing her2 normally would not have been eligibile for herceptin by current standards. |
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Joni0702 Joined: Nov 2007 Posts: 125 |
Apr 18, 2008 05:31 pm
Joni0702 wrote:
Liz, Yes, I spoke with the woman who runs the trial in the hospital in PA (cannot recall name of hospital but can get it for you). You needed to be positive by FISH. She also said you need to be ER and PR negative. These are for the trial run by Walter Reed at various medical centers across the country - perhaps another trial has different criteria. I would love to find a trial closer to home. |
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Hope_M Joined: Dec 2003 Posts: 958 |
Apr 19, 2008 12:12 am
Hope_M wrote:
I am already three years out from treatment for highly Her2neu positive, ER/PR - cancer. I took a year of Herceptin before it was approved for my stage of cancer (Stage 3). I had 4 positive nodes.
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2KidMom Joined: Apr 2008 Posts: 5 |
Apr 19, 2008 11:08 pm
2KidMom wrote:
Sounds interesting!! Let's hope this trial goes well and all of us will have a chance for something similar in the near future!! Dx 9/14/2007, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2+ |
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magentagirl… Joined: May 2008 Posts: 34 |
May 11, 2008 11:50 am
magentagirl wrote:
my first oncologist said no further treatment (HMO). Tuesday I meet with second opinion doc outsidde of the HMO. i am stage 1, her2+ and er pr negative. Anyone in the same boat? I don't know whether to hope FOR getting Herceptin or hope not to. I don't trust the HMO since the Herceptin is so pricey they would never suggest it. |
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Dejaboo Joined: Mar 2008 Posts: 1021 |
May 11, 2008 12:02 pm
Dejaboo wrote:
Magentagirl- I am in a similar boat. You can see my Diagnosis in my Signature. My Tumor is very tiny 1.2mm (not cm) What is the size of your Tumor? I am also ER+ though only 18%. I have had 1 Onco tell me Chemo, Herceptin & Tamox (even though I found out last week I have a Hole in my Heart- which Gives me a High Stroke risk- so No way would I take Tamox) Although that wont effect you with both of yours Negative. I have had 2 Oncos say Nothing After my BL Mastectomy. I assume they would say the same if I had a Lump with Rads & I did have Lump & SNB. But am having a BL Mast on May 22nd (My Choice) One of the Oncos was the Head of Oncology for BC in Madison. I still have not decided what to do. It is very hard to decide. I need to heal from my Mastectomy before I would start anything. There are a few others who are similar...Some are doing Chemo & Herceptin. I have found a few who have done nothing. Do check out the Her2support.org Pam Dx 3/7/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR-, HER2+ |
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magentagirl… Joined: May 2008 Posts: 34 |
May 12, 2008 03:19 pm
magentagirl wrote:
My tumor of IDC was so tiny they had to go back to the biopsy slides to test for the Her 2 ANd the hormone receptors. Did you only have it in one breast and elect to have both removed? That is a question I want to ask tomorrow when I meet with the onc. since I only had the right breast removed. Most of my cancer was DCIS with a tiny bit of invasive. It is all so scary and much easier when the desicions are clear or made for us as was the case with the mast. l wAs so happy with the dx at first and then started reading about the her2+.
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Rocktobermo… Joined: Sep 2005 Posts: 3301 |
May 13, 2008 01:19 pm
Rocktobermom wrote:
Magenta girl, since you are her2+ but er/pr- ... I would get chemo and do the herceptin. Chemo works well for er/pr- and the herceptin will benefit you as well. I'd go for a 2nd opinion or a 3rd to make sure to get herceptin and a taxane based chemo. The problem with the gene pool is that there is no lifeguard.
Dx 7/18/2005, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2+ |
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bluejay1 Joined: May 2008 Posts: 18 |
May 13, 2008 04:29 pm, edited May 13, 2008 04:31 PM
by bluejay1
bluejay1 wrote:
rocktobermom,
Dx 1/2/2008, IDC, 1cm, Stage I, 0/3 nodes, ER+/PR+, HER2+ |
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TPPJ Joined: Jan 2007 Posts: 989 |
May 25, 2008 08:42 pm
TPPJ wrote:
Magentagirl, if you're HER2/neu+, I'd definitely do the herceptin. It's a gift that we can even get it in early stage. I am so thankful it was approved for early stage right when I needed it (Jan. 07). I did something like 49 of 52 treatments but had to stop because I was dx'd with cardiomyopathy...could be from the a/c, herceptin or both. Even still, I am still so glad I got all the herceptin I did because I feel like if i didn't, the cancer would have gotten me eventually. Now I worry about my heart but the meds. have it under control. |
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