Posted on: Feb 2, 2009 10:28 PM
Bay Area, CA
Joined: Jul 2005
Posts: 825
tooyoungtohavebc wrote:
Hi there
I have just been invited to participate in a phase of the trials for TDM1 or super herceptin as some are calling it. I have to take tests before I am officially selected, but is anyone else here in this trial or any of the past ones? Just wondering how it went.
Wish me luck! I hope I get approved and hope it works!
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
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Apr 6, 2009 08:30 PM tooyoungtohavebc wrote:
hello! So second infusion was last Thurs and I think the skin mets are smaller! Yeah! Pain was less this time around although still tummy issues.
I am doing the new herceptin along with zometa but no chemos and this trial is phase 2 according to the paperwork they gave me.
Scans in 2 weeks should tell me more
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
radiant
Joined: Aug 2005
Posts: 597
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Apr 7, 2009 12:57 PM radiant wrote:
Thanks BEYOND for keeping us up to date w/your journey through the TDM1 trial. Us Her2+++ gals really, really appreciate it.
- Kim
Reneepals
New Haven, Ct
Joined: May 2006
Posts: 2,171
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Apr 7, 2009 01:04 PM Reneepals wrote:
Too Young,
You Go Girl! It seems like it's kicking butt.... I pray you get great results.
Hugs
Renee
bmdaley
Washington, DC
Joined: Jan 2008
Posts: 291
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Apr 7, 2009 01:30 PM bmdaley wrote:
Wow, thanks for all the updates from the ladies on this important clinical trial. This is so encouraging! Am happy to hear you are feeling better too young :)
Dx Stage III 1/2004. HER2+, ER+, PR-. Dx Stage IV 11/2007 liver, chest wall, bones.
mthomp2020
Loveland, OH
Joined: Jul 2007
Posts: 1,932
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Apr 7, 2009 07:07 PM mthomp2020 wrote:
Thanks for the update! Sounds like it's doing the job for you! Isn't it great to have another weapon in our arsenal?
Dx 5/21/2007, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Apr 7, 2009 08:04 PM fightinhrd123 wrote:
Thanks for posting this, I just found it, its really exciting to see the new drugs emerging.
Laura
Dx 5/29/2008, IDC, 2cm, Stage IIb, Grade 2, ER-/PR-, HER2+
Catgo
Joined: Aug 2003
Posts: 46
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Apr 8, 2009 01:22 PM Catgo wrote:
I am at this moment having my 5th infusion of this drug at Sloan Kettering. Six weeks ago my liver lesion was 2.7 x 1.4 cm, today it is 1.3 x 0.8 cm. Side effects are not bad for me, really only a little nausea that I could fix with some meds but they tend to give me headaches so I choose to do nothing. I do require a little more sleep than I used to but I am 55 & this could be normal. I was diagnosed stageIV almost 3 years ago & my problem has always been that drugs worked great for me but only for about 6 months. My Doc here is nearly positive that this drug will work for me for a long time. She says most of her patients are still on the drug 2 years after they started. The trial is a little time consuming. I live 2 hours from the hospital and even though the drug is given every 3 weeks, I sill have to come in every week for blood and every 6 weeks for scans (CT & bone). Also an Echo every 6 weeks. For me its worth it but its not always easy.
Cathy
mthomp2020
Loveland, OH
Joined: Jul 2007
Posts: 1,932
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Apr 8, 2009 01:37 PM mthomp2020 wrote:
I'm hoping this will become available quickly. I seem to be prone to neuropathy, so there aren't really all that many drugs out there that don't cause it. This gives me another tx that won't damage my nerves further.
Dx 5/21/2007, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Apr 14, 2009 04:56 AM hazelfox36 wrote:
Someone Tell me about this, my wife has done Taxotere, herceptan, and just quit taking Tykerb/Xlodea. She just started Hospice. Off for only 2 weeks now. She does not have long left with me and I need to find out about this ASAP. someone HELP PLEASE! We need a miracle!! willing to do whatever it takes.
Dx 10/12/2007, IDC, 5cm, Stage IV, Grade 3, 3/4 nodes, ER-/PR-, HER2+
Catgo
Joined: Aug 2003
Posts: 46
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Apr 14, 2009 09:09 AM Catgo wrote:
Ask your wife's Doctor...if you don't get a satisfactory answer call Breast Cancer Research centers, don't stop until you get all your questions answered. I do know that they have just recently opened up this study to allow for more patients.
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Apr 24, 2009 10:46 AM tooyoungtohavebc wrote:
update: had my 3rd infusion yesterday and met with doc. He was very excited! Skin mets look better and scans are stable so that is good. I have a lot of fatigue from this stuff and latest development is my vision appears to be getting worse in one eye and I just had my eyes checked a few months ago. I think it has got to be the drug. Still having some stomach issues too but def better and joints and bones hurt on and off, but hey better than chemo for sure!
Stay tuned....
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
Irina
Rockford, IL
Joined: Feb 2008
Posts: 964
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Apr 25, 2009 10:29 PM Irina wrote:
I'm so happy for you, you are better with this than with chemo
PRAYERS and (((HUGS)))
Dx 2/2004, 4cm, Stage IV, 5/0 nodes, mets
Marsha56
Minneapolis, MN
Joined: Feb 2007
Posts: 129
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Apr 27, 2009 02:07 PM Marsha56 wrote:
HI LADIES! the studies of the Trkerb and the DMI are ones I have done each of which stop my tumors from spreading and growing for about 18 months. On the trkerb study I was on the ABC evening news an went to New York and met the researchers who from it!
So I am hoping each of you have a chance to use these trails to see how they work on your cancer!
blessings!
Marsha56
Dx 7/25/1996, IDC, 6cm+, Stage IV, Grade 3, 17/21 nodes, mets, ER+/PR+, HER2+
Catgo
Joined: Aug 2003
Posts: 46
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Apr 29, 2009 08:07 PM Catgo wrote:
My 2.7cm liver lesion is only .06cm on this drug after only 5 treatments. My Doc told me today that she just got back from Germany where there was a conference about this "miracle drug," as they are calling it around the world. She expects that trials will be opening everywhere very soon.
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Apr 29, 2009 09:08 PM tooyoungtohavebc wrote:
Can you say tired tired tired...herceptin made me tired anyway, but now it feels worse. Oh and my eyes are getting worse too after this 3rd treatment. Skin mets look a bit smaller though again so good news there!
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
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Apr 29, 2009 09:52 PM TenderIsOurMight wrote:
Too Young,
I checked for an update earlier today here, and so now I read your words. I'm sorry you are so fatigued, yet heartened by the skin's improvement. I wish you continued strength in tolerating this medicine. Newer thoughts on cancer fatigue sometimes include discussion of Ritalin or other stimulants to counter the great fatigue which accompanies some chemotherapy. I hope your blood count is normal, and you are not low in thyroid, being simpler causes of tiredness.
May all you ladies find continued success in this trial, and hopefully feel our support as you walk this challenging journey.
My best to you all,
Tender
It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)
LuAnnH
Cincinnati, OH
Joined: Aug 2006
Posts: 8,541
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Apr 29, 2009 11:06 PM LuAnnH wrote:
this is so cool! I am so glad to hear of such great results. After listening to one of the doctors speak of the HER2 status in Philly I think they will start finding more ways to help those that are considered HER2 neg. If I can figure and understandable way to explain it I will try and do it.
LuAnn -- www.luannsblog.typepad.com
Dx 7/2/2006, IDC, 2cm, Stage IV, 0/ nodes, mets, ER+/PR+, HER2+
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Apr 30, 2009 08:43 AM runtolive wrote:
hazel fox.. call your oncology office today.. ask them if they have this trial.. tdm1..
if not.. ask them to research and find it in your area. california has many sites.
<table><tbody><tr><td>United States, California</td></tr><tr><td>Cancer Care Associates</td><td>Recruiting</td></tr><tr><td>Redondo Beach, California, United States, 90277 </td></tr><tr><td>Contact: Sherry Hutcherson 310-750-3376 mailto:shutcherson%40mednet.ucla.edu?subject=NCT00679341, TDM4450g, A Study of the Efficacy and Safety of Trastuzumab-Mcc-DM1 vs. Trastuzumab (Herceptin®) and Docetaxel (Taxotere®) in Patients With Metastatic HER2-Positive Breast Cancer Who Have Not Received Prior Chemotherapy for Metastatic Disease </td></tr><tr><td>Central Coast Medical Oncology</td><td>Recruiting</td></tr><tr><td>Santa Maria, California, United States, 93454 </td></tr><tr><td>Contact: Alison Fernandez 805-739-3724 mailto:alison.fernandez%40chw.edu?subject=NCT00679341, TDM4450g, A Study of the Efficacy and Safety of Trastuzumab-Mcc-DM1 vs. Trastuzumab (Herceptin®) and Docetaxel (Taxotere®) in Patients With Metastatic HER2-Positive Breast Cancer Who Have Not Received Prior Chemotherapy for Metastatic Disease </td></tr><tr><td>Comprehensive Cancer Center</td><td>Recruiting</td></tr><tr><td>Palm Springs, California, United States, 92262 </td></tr><tr><td>Contact: Claudia Fortiche 760-416-4736 mailto:cfortiche%40aptiumoncology.com?subject=NCT00679341, TDM4450g, A Study of the Efficacy and Safety of Trastuzumab-Mcc-DM1 vs. Trastuzumab (Herceptin®) and Docetaxel (Taxotere®) in Patients With Metastatic HER2-Positive Breast Cancer Who Have Not Received Prior Chemotherapy for Metastatic Disease </td></tr><tr><td>North Valley Hem Onc Med Grp</td><td>Recruiting</td></tr><tr><td>Northridge, California, United States, 91325 </td></tr><tr><td>Contact: Pamela Riach 818-885-8500 ext 2832 mailto:priach%40mednet.ucla.edu?subject=NCT00679341, TDM4450g, A Study of the Efficacy and Safety of Trastuzumab-Mcc-DM1 vs. Trastuzumab (Herceptin®) and Docetaxel (Taxotere®) in Patients With Metastatic HER2-Positive Breast Cancer Who Have Not Received Prior Chemotherapy for Metastatic Disease </td></tr></tbody></table>
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Apr 30, 2009 08:50 AM runtolive wrote:
too young.. your eye problems occur in about 10% of the patients.. use lubricant eye drops if possible.. and ask your onc about holding the treatment an extra week..dose every 4 weeks rather than 3 weeks... this seems to work for most patients. to date i only know of one patient who dc'd the drug because of eye problems.
dont let them kick you out of the trial if your tumors are shrinking
run
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May 28, 2009 10:32 PM tooyoungtohavebc wrote:
Wow time is just flying. Next week I will have my 5th infusion. Most of my side effects are still there, but more tolerable.
Still have shortness of breath, some tummy issues, vision problems (eye doc confirmed changes), dry mouth, some pain (tolerable though). My worst issue is still FATIGUE. Gosh I am so tired of being tired...prolly heard me say that already
Seriously I feel 90 years old. I take naps when I can and still can go to bed early and sleep at least 8 hours and still wake up tired. So annoying. It got better after 3rd infusion and then 4th infusion it kicked back in like a mofo. Ok I will stop complaining now.
Results: well skin mets still in check but not too much diff from last infusion. Tumor in nodes that I can feel seems about the same too. Have a scan in a few weeks which should tell me more.
Clinical nurse at Kaiser in San Fran told me they are loosening up the requirements to get in the trial in hopes of enrolling more women and that most in the trial are seeing good results. Yeah!
Stay tuned...
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
mthomp2020
Loveland, OH
Joined: Jul 2007
Posts: 1,932
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May 29, 2009 11:08 AM mthomp2020 wrote:
I do hope they loosen the requirements. The practice I go to is participating, but that particular trial requires that you have already had Tykerb/Xeloda, which I haven't. With most available chemotherapies causing neuropathy, I'm going to run out of options pretty fast. Navelbine worsened my numbness, and I don't want it to ruin QOL for me, which it very well could. TDM1 would be a godsend for me.
Dx 5/21/2007, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+
Reneepals
New Haven, Ct
Joined: May 2006
Posts: 2,171
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May 29, 2009 11:18 AM Reneepals wrote:
This is really exciting news for Her2 ladies. We need more research!
Renee
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May 29, 2009 03:52 PM runtolive wrote:
roche/dna will be reporting results in the next few days at ASCO.. TDM1 will be featured in a BEST OF ASCO.. presentation..
2young.. which trial are you participating in.. the phase 2 trial that just completed enrollment. for patients who have already taken tykerb.. or a different tdm1 trial.
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May 29, 2009 05:09 PM tooyoungtohavebc wrote:
I am participating in phase 2 for those who have taken tykerb...
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
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Jun 11, 2009 11:20 AM tooyoungtohavebc wrote:
I just had my 5th infusion. Also got results of CT which still show stable overall although doc says he sees small improvements and def no new lesions. I know that is good in the cancer world, but I just want them to say...IT IS ALL GONE!!
So I will continue on the drug. Still tired as dirt and vision getting worse. May have to quit working for a while at some point.
Ok will post again when have something new to tell
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
kim40
Halifax, NS
Joined: Dec 2008
Posts: 891
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Jul 30, 2009 01:20 PM kim40 wrote:
tooyoungtohavebc
Just wondering how you are doing on this trial? I'm curious to hear as I just started taking Herceptin. Wondering if this trial is available in Canada as well.
Thanks!
Kim "I Live to Run" - Melissa Ethridge
Dx 1/6/2009, IDC, 5cm, Stage IIIa, Grade 3, 14/19 nodes, ER+/PR+, HER2+
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Jul 30, 2009 01:37 PM tooyoungtohavebc wrote:
Hi Kim,
Still plugging along in this trial. Scans I had last week still show stable so seems to be keeping things in check. Skin mets have not gone away completely but are a bit smaller which is good because they were growing like mad for a while there.
Side effects are bout the same. lots of fatigue. Had to increase my contact prescription as my vision continues to get worse. Still have tummy issues and some back pain, but def better than when I started. Am taking some time off of work to help lower my stress levels and hopefully build up some energy.
Not sure if this trial is available in Canada. Good luck with the Herceptin...it has helped a lot of women!
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
kim40
Halifax, NS
Joined: Dec 2008
Posts: 891
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Aug 1, 2009 09:15 AM kim40 wrote:
Thanks for the update - keep us posted on how this is going. I'm very interested to hear about it.
Kim "I Live to Run" - Melissa Ethridge
Dx 1/6/2009, IDC, 5cm, Stage IIIa, Grade 3, 14/19 nodes, ER+/PR+, HER2+
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Sep 3, 2009 11:54 AM tooyoungtohavebc wrote:
Hey everyone,
Been a bit since I updated. Good news is that my scans show that I am stable. I know it is better than progression, but oh how I wish for NED!
Still have lots of fatigue (I yawn a ridiculous amount of times daily)...my eyes seem to be even more irritated and I swear most of these drugs make me an emotional mess. I cry at like anything now and that is so not me...annoying. Also think this one (similar to when I took Tamoxifen and did not want to get out of bed) causes some depression. I didnt really have this when I did xeloda/tykerb and just herceptin so I know it is directly related to this drug. Also continue to have stomach issues, feet probs with both tingling and my skin.
Anyone else enrolled in this trial in other areas of the US? I think they closed this phase of the study recently and they just told me yesterday that instead of being limited to 17 cycles of the drug, that I can continue to have the treatment as long as it continues to work for me. Sounds like it might be getting closer to being moved to review to be approved.
Dx 2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+