TRIPLE POSITIVE GROUP
Comments
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TonLee You are supposed to be enjoing this time alone not stressing about your diagnosis! Go pop some popcorn and put in another movie!
I know, easier said than done, my head goes into some very dark places at times too. Maybe we should do rubberband therapy. Put a rubberband on your wrist and whenever you think dark thoughts snap yourself.
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carberry he he I had to laugh about playing the cancer card. I rarely do it but on the few occasions I have it works quite well shhhhhhhhh
Glad your scan was ok
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TonLee there are lots of folks with your same diagnoses that are still around. Some of them didn't even get Herceptin. If everyone with your same diagnosis reacted the same way then your onc would have said "you have 2 years" It just doesn't work that way. Unless you two were twins you can't assume you will have the same results.
As far as your BF. I can't blame her. If the place was decorated in a way I loved I'd probably leave it too. If I should outlive my husband and marry someone new I won't forget my husband. Just like I don't forget some of my old boyfriends (I'm connected with 4 of them on facebook). They are part of my past, some are even friends but that doesn't mean I love my husband any less. All these people were part of my life and I wouldn't want to change that. Remembering is fun. Your BF husband probably remembers the good times with wife #1 but is also enjoying his life with your BF too.
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Tonlee= I dont feel any two people (like snowflakes) are alike. You are one of the healthiest people I have heard from on these posts and one of the most educated. I feel all of us triple+ ladies with the help of Herceptin will be here for a very long time and hopefully still communicating with each other to tell our success stories.
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Tonlee. I Occasionally have the dark thoughts,too. Less frequently. Once I was well out of chemo and feeling pretty good they became less frequent. Also the warm weather has helped. The cold seemed so awful during chemo. Like Lago says we triple positives are in a good place. I did glance at a copy of cure magazine at the RO office. A lot about the TDM 1 trial for Her 2.
Tomorrow is Dr day at the RO with Dr Cute. Last week I told him I was so worried about the lumpectomy spot sinking in that I was constantly checking it like a teenage boy. He laughed and said "dontwear it out!". Libraylil0 -
What is the deal with TDM 1. I know this is listed as an area of interest of my onc. I assume it's too late to be part of the trial if you've finished with chemo right?
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hi,
I know what HER2+ means, but did anyone know what means HER2+ 8,6)?
3+ girls, spring is coming, we are alive, we should enjoy our lives now....
greetngs
slousha
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slousha some folks are highly HER2+. My path said 15 which to my understand is pretty damn high. I'm not expactly sure what it means to be highly HER2+. I like to think it means I'll respond better to Herceptin but I'm not so sure that is really true.0
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lago - I'm curious about TDM1 too. I don't know anything about it - but does it need to be given with other chemo? I'm going for Herceptin tomorrow and will ask my onc about it.
Tomorrow is number 15! Two more after that and I'm done!
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saralmom let me know what your onc says.0
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Lago,
T-DM1 is a conjugate comprised of herceptin, a very potent toxin maytansine (many more times stronger than standard chemo) and a linker that keeps the toxin at bay while the conjugate is in the bloodstream searching to meet up with the Her2+ tumors. Only after a connection is made will the linker release the toxin from the herceptin tumor and help to destroy it, thus its relatively low toxicity to patient.
The following link will give you information on status of all T-DM1 trials and provide lots of information on trials particulars, including location, recruitment info if still applicable and how to contact investigators and Genentech.
http://www.clinicaltrials.gov/ct2/results?term=t-dm1
Hope this short blur helps.
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Thanks looks like all the trials are for locally Advanced or metastatic breast cancer. Since I had no nodes I don't think I'm considered advanced… but maybe because of the size of my tumor. It doesn't really look like I would have been eligible so maybe that's why it wasn't discussed.
I know there is a trial going on regarding oral Herceptin (pill) given after the year of infusions. My neighbor told me about it. Our onc just presented her with that a few weeks ago. I haven't seen my onc since January so it must be new. (Yes my neighbor was also HER2+ too). I'm going to investigate that. Anyone heard of it?
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Okay - I asked my onc about TDM1 today. She said that its in stage 2 trials right now and looking good, but the stage 3 trials are where it needs to prove itself. Only metastatic patients are eligible for the trial - and not just nodes I think - stage 4 first line treatment was how I understand it. She said she thinks it will be at least 2 years before it is approved and could be up to 5 before its used for adjuvent treatment (early stagers).
Her hopes for a more immediate addition to the HER2 arsenal is Lapatinib. That is the oral pill. However, she said that it goes WITH infused Herceptin. She thinks that might be available for me if we think it would be useful in the near future.
She didn't mention another oral form of Herceptin...
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Thanks guys. This is my favorite thread
Went for Herceptin today...not the 3 dose...I guess I have 1 more weeks of single dose before I start the once every 3 weeks.
Pooped though. Whew. For some reason Herceptin alone makes me tired.
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I think it's the whole drain of infusion day TonLee. I was always wiped out, mentally, emotionally, physically on infusion days. All I ever wanted to do was come home and snuggle under a nice warm blanket and rest afterwards. Cheers to one more down!!!!
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Hi Iago, Saralmom, Schoonder
I am actually set to participate in a study of TDM1 in early stage bc - there is a small one (135 patients) recruiting now. (It is #2 on the link Schoonder provided). All potential recruits have to have their HER2+ status verified by the same lab in Germany, so I'm still waiting for that result to come in before I am officially signed up. My onc. says that the study will close enrollment at the end of April. I have to complete my 4 rounds of AC first, and then on to TDM1.
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Cellomomof5 I'm so excited for you. Yes too late for me but this is great for you. Keep us posted on how it goes!
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I just got my resutls back from Germany for the T-DM1 trial, and they did a whole battery of heart scans and blood tests on me today. The good news is I passed! I am in the trial! Hooray!
I start A/C under the trial next week (weird that A/C is considered part of a T-DM1 trial, I know), Then optionally on to 4 treatments of Taxol, then a year of T-DM1.
I am part of the same trial as CelloMom, at the same medical facility. Cello: Can you schedule your chemo for Wednesdays? We could compare notes! I will be there with my Penguin Cold Caps on every other Wed. starting April 6th.
Are you doing cold caps? If so, maybe we can jointly advocate for the FREE freezer! I asked today and they said it would be hard to find space, so it's dry ice, unfortunately. But if we both asked, maybe there would be strength in numbers!
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Cello and windlass. Definitely keep us posted on the trial. This is wonderful. Libraylil
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Windlass - congratulations! Glad to hear you passed all your scans and tests. Wow - your oncologist moved things along very quickly - I'm still awaiting those darn results from Germany...
Good luck with the cold caps, and your first AC. I go on Thursdays - have finished two rounds of AC, and have my third on April 7th. I'm afraid my hair is already gone...
I'll let you know when (and hopefully if) I am officially enrolled, so that we can compare notes. 0 -
CelloMom: Talk to Dr. Ian (Aye-an) Krop (kropp) and ask him to expedite your samples. He is overseeing the trial at DF and sent my tissue samples Friday afternoon. The results were already back by this morning!
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Congrats Wildlass....I am so anxious to hear how it goes, I'm sure you will keep us informed!
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Cellomom and Windlass - can't wait to hear how it goes for you!
Kind of makes me worried that my onc was so adament about there being no trials for early stage. Does she not know the latest info?????
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Oops sorry I forgot to wish Cellomom goodluck too!
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Cellomom and windlass - Awesome news!! How exciting. I can't wait to hear the results.
And, Saralmom - I feel like that too....
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Sara and Leanna: I have to drive 2.5 hours each way for my infusions to participate in the trial, since this trial is not offered locally.
The reason you may not have heard about any of these trials is that the only hospitals participating appear to be the large research institutions. And the only way you'll get offered a chance to be in a trial is if you meet with an oncologist at one of the research hospitals for a consult.
My local hospital did not mention this trial to me (or any other trial, for that matter) back when they crafted my treatment plan. I only learned about the trial when I went to Dana Farber for a second opinion. After seeing that I was eligible, they couldn't tell me fast enough! Not wanting to drive so far (Dana Farber is 2.5 hours away), I checked with my local hospital and learned that they can neither enroll me in the trial themselves, nor can they administer the drug on behalf of the other hospital.
So it makes sense that oncologists at local and regional hospitals do not have an incentive to tell patients about clinical trials being offered elsewhere. In my case, it means they lost a patient!
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So excited for you guys-cello and windlass!!!! Please keep us posted! From everything I've read so far, this looks very promising for us!!!!
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Windlass:
Is this trial similar to the one being offered at my Center which I turned down:
It is for Early Stage Breast Cancer. It was explained to me that they wanted to add the Lapatinib with the Herceptin and is currently being used for Advanced Stage and they want to see how it works on Early Stage BC.
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Adjuvant Lapatinib and/or Trastuzumab Treatment Optimisation Study: A Randomised, Multi-Centre, Open-Label, Phase III Study of Adjuvant Lapatinib, Trastuzumab, Their Sequence and Their Combination in Patients with HER2/ErbB2 Positive Primary Breast Cancer
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Windlass - I checked in with my onc. today just to see what the holdup was. He said that things are set, but that protocol states I can't be officially "enrolled" until I've completed my fourth AC. Since that happens on April 21st, his plan is to have everything signed on that date. He said not to worry about it, so I'll try not to! I remember the study nurse said Ian Kropp is heading the study - perhaps he was able to pull some strings for you.
In any case, let's hope it all works out well for both of us, and helps open up further trials for more early stage and later stage participants - it certainly seems like a chemo route that many of us can hopefully benefit from in the near future. 0 -
And ditto to what Windlass said about hearing about the trial - I was not told of this trial by my original oncologist, and only found out about it through a colleague who strongly recommended a DF consult. I also moved my treatment from another centert. I'm lucky in that I don't have quite as far as Windlass does to travel (45 minutes), but heading into Boston for anything is a big PITA!0
