Super Herceptin TDM1 Trials

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tooyoungtohavebc
tooyoungtohavebc Member Posts: 779
edited June 2014 in HER2+ (Positive) Breast Cancer

I have started a clinical trial of the drug some are calling Super Herceptin (TDM1). I posted a thread on this under Stage IV if anyone wants to follow. So far had 2 infusions and things are looking positive. I was off Herceptin (the regular kind) for 6 weeks prior to starting the trial and just during that short time my tumors started growing again. That HER2 really makes these tumors go crazy...it's scary...but I am excited to be in a trial.

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  • orange1
    orange1 Member Posts: 930
    edited April 2009

    Hi tooyoung,

    From what I have read, researchers are pretty excited about this drug - they believe it has a good chance of being a significant improvement over regular herceptin.

    Good luck with everything.

    Jackie

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  • DianaT
    DianaT Member Posts: 532
    edited April 2009

    please keep us posted about this! 

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  • deemarie
    deemarie Member Posts: 14
    edited April 2009

    are u taking arimidex or any other drugs?

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  • hazelfox36
    hazelfox36 Member Posts: 45
    edited April 2009

    Did you HAVE to be off chemo for a period of time? I need to know right away, ... My wife has been of chemo for almost 2 weeks. My wife is 39 and is also HER2 Pos. It has gone all over the place in her body. She is in hospice cause they told her that there was nothing left they could do.  we live in So. Cal. PLEASE HELP US!!!!!! She does not have long left. In 4 days she has gotten so much worse andI don't think she will last another week! If you can PLEASE get me the information, ........ I would be eternally grateful.

    kojack1027@aol.com

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  • orange1
    orange1 Member Posts: 930
    edited April 2009

    Try posting in the stage IV forum.  It gets a lot more traffic.

    Good luck

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    http://seekingalpha.com/article/38087-super-results-for-genentech-immunogen-s-super-herceptin-collaboration

     Sounds pretty promising!

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  • romahocet
    romahocet Member Posts: 1
    edited July 2009

    I am also starting this trial next week.  I would be interested in any side effects you experience.  How often do you get this chemo and for how long.  I am sure I will find this out next week when I go in but would like to hear from someone who is currently getting it!  Ellen

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  • vannah
    vannah Member Posts: 1
    edited April 2011

    I've been on TDM1 since December. I would like to know if anyone else has back and leg cramps and or spasms. I don't know if this is a side effect or not, but I have cramps in my feet and back pretty oftrn. Anyone know what might cause this? My scans show good regression of tumors.

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  • elmcity69
    elmcity69 Member Posts: 998
    edited April 2011

    Hey ladies,

    For what it's worth: my oncologist, who is cautious about new research, is also pretty excited about this drug. He feels it's going to be an important tool in the arsenal for women living with Stage IV, and maybe for others, at some point.

    Good luck to you gals in the trial.

    hugs

    Janyce

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  • cellomomof5
    cellomomof5 Member Posts: 71
    edited April 2011

    I'll be having my first round of T-DM1 in two weeks, as part of a clinical trial involving women with early stage and locally advanced bc.  It will be interesting to see how helpful it is for women with earlier stage disease in the long run... I'm both excited to be part of it, and very nervous about having made this choice over the standard Taxol/Herceptin regimen.  I know I'm saving myself a bunch of side effects, but I sure hope it is at least as good as taking out those cancer cells!

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  • bluemorpho22
    bluemorpho22 Member Posts: 3
    edited April 2011

    I have had three infusions of tdm-1 and my markers dropped 140 points between 2 and 3.   but, I have headaches sometimes, and muscle cramps.  some other side effects.  want to know what other people have .  cheers,   Helene

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  • elizab
    elizab Member Posts: 1
    edited May 2011

    I have been having good results from T-DM1 too. Side effects: neuropathy in feet and hands increased, some muscle cramps in legs at night (but not lots), drippy eyes, some gastro-intestinal upset (but getting better). Nothing terrible at all. My energy has improved greatly.  I am in a Compassionate Use program in Charleston, SC

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  • macygrace
    macygrace Member Posts: 205
    edited June 2011

    I've had 2 months of chemo with the drugs adriamycin and cytoxin. The oncologist was not sure if the bc had metasisized until after the two months of chemo due to numerous past injuries of mine. After the chemo, it was determined it was in my hips, a rib, serveral discs in spine and sternum. I am ER/PR HER2 Positive and have been put on tamoxifen.

    Should this TDM1 trial pass, would it be available to people like me ? It would be nice to have some kind of hope.

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  • annfromatlanta
    annfromatlanta Member Posts: 9
    edited June 2011

    I have had 3 infusions of T-DM1, and will hopefully get my 4th on this Friday. I'll go in early that day for a CT Scan (my 1st since day 1 of the trial) to see if the cancer has advanced more than 20%. If it has, I'll have to quit & find something else. If it hasn't, I'll continue making that trip from Atlanta to Charleston every 3 weeks. I'm wondering where you travel from, elizab, since you are also going to Charleston for the treatments. The side effects I experience are: constipation for 1-1/2 weeks after each treatment, off & on mild nausea, some stomach pain, increased neuropathy, headaches, memory problems, fatigue (worse in the first few days following the treatment). Regarding the constipation, the doc & clinical trial nurse said that they did not think the chemo was causing that. They suspected it was being caused by the anti-nausea drug given with the chemo. I suggested I go without that anti-nausea drug, but they warned me that I would most likely be "puking my guts out" without it. Anyone? My prior experience with nausea drugs & chemo is that none of the nausea drugs worked for me, which is why I made the suggestion. I have not had leg cramps. My suggestion to those of you who do is to keep well hydrated & if you drink, to limit your alcohol consumption.

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  • sam1
    sam1 Member Posts: 28
    edited June 2011

    I am waiting to see if I can get on this trial. I am triple positive and had breast cancer ten years ago. One of the reasons I am trying to get on this trial is cause my insurance will not cover chemo or scans only the operation to remove breast. The nurse who is in contact with me about the trail has told me that I can not have a masectomy right now, that if I get on the trial the operation will be one or two months later, has anyone else that is on the trial experienced this. Thanks

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  • cellomomof5
    cellomomof5 Member Posts: 71
    edited June 2011

    annfromatlanta

    I am also in a TDM1 trial - although I've had a number of side effects (aching, sore muscles, dry mouth, mouth sores, sniffles, fatigue) I have not had major trouble with nausea, (just a tiny bit unsettled on days 1&2) and have taken no anti-nausea meds.  I get nauseous easily, and had lots of trouble with it during AC, but none with TDM1.  I'm interested that they warned you that you would be puking your guts out - my doctors assured me that nausea would not be a major issue. I hope round  goes better for you!

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  • sam1
    sam1 Member Posts: 28
    edited June 2011

    Hi cellomomof5 question. Are you getting your treatment every week or every 21 days. How long have you been on the trial.

    Thanks a lot

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  • cellomomof5
    cellomomof5 Member Posts: 71
    edited June 2011

    Hi sam1:

    It's every three weeks for me, and I'm getting Round 3 tomorrow.

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  • waterlady
    waterlady Member Posts: 56
    edited June 2011

    I just had my first infusion of TDM-1 , no nausea meds, and did not feel nauseous.  Had severe finger and toe cramping within an hour of infusion.  Very heavy period and platelets dropped from 220 to 47.

    Those were probably my major symptoms, but I am keeping a journal of side effects, which I believe is a good thing to do for anyone on treatment. I do my second treatment in 2 days time.

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited June 2011

    Help!  How can I get in this trial?  I qualify.  My oncologist didn't run the FISH test when I was diagnosed because I was borderline and she was certain it would be negative.  I did chemo first and there was a little bit of tumor left at surgery.  That came back positive, so I started the Herceptin.  But I didn't start it with chemo - I started it two months after chemo.  So I really think I should try to get in this trial to improve my prognosis.  If anyone could send me info on how to get in, that would be absolutely amazing!  Thanks!!!

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  • sam1
    sam1 Member Posts: 28
    edited June 2011

    Thanks for getting back to me. What arm of the study are you on? What drugs are you getting during Chemo. How are you feeling afte your two rounds of chemo? I should be starting my first round of Chemo this coming Tue, but I have been told they can not at this point tell me if I will be on the 8 day cycle of chemo or the 21 day. Any info will be really helpful.

    Thanks

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Had round two last week. Side effects: tired, achey, poor vision, petechiae (tiny red homorrhages under the skin), dry mouth, very sore feet. Platelets down to 59 one week post-infusion.

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  • sam1
    sam1 Member Posts: 28
    edited July 2011

    I had second doze of chemo today, feeling ok so far, when they took my weight i had put on 4 pounds since last week, hope this dose not continue, nurse said it was the pre meds and steriods that are putting weight on. Getting next shot of chemo on the 14th of July, then after that five more rounds to go before they send me to the states for scans.

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  • Laurie7
    Laurie7 Member Posts: 2
    edited July 2011

    Hi everyone...just had my first infusion of T-DM1 on Tuesday..I think I might have leg cramping/tightness slightly..My question is...does anyone feel heaviness in their chest or have a hard time taking a deep breath??

    Laurie :)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Hi, Laurie. Welcome!

    I had a lot of muscle aches and foot problems after the first infusion, but they've gotten a lot better now. (I just had my third infusion on Wednesday.)

    I have had NO problems at all with breathing. I know that TDM1 can impact the heart, so you may want to run your chest or breathing issues past your oncologist or nurse. It's probably nothing, but better safe than sorry.

    Are you on a trial? I'm on a Phase II clinical trial for "early" breast cancer.

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  • twinsmom96
    twinsmom96 Member Posts: 55
    edited August 2011

    Glad to hear TDM-1 is working so well for you all I am in a clinical trial unfortunately I got the arm of standard treatment taxol and herceptin not the TDM-1 was kind of disappointed but my doctor seems to think this trial will lead to FDA approval he is also very optimistic about this drug good luck to everyone.

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  • ScienceStudent
    ScienceStudent Member Posts: 3
    edited November 2011

    Good to see this drug still looks promising.

    Would anyone here be able to supply me with any information on the administration and absorption of this drug? I know it is given intravenously but thats about it! Or point me to where I could find any information like this? Thanks...! 

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  • orange1
    orange1 Member Posts: 930
    edited November 2011

    You might try looking at the SABCS (San Antonio Breast Cancer Symposium) posters from 2007 (or when Phase I trials were ongoing) .  Often, non - Wow! results such as pharmacokinetic parameters are reported in poster sessions.  It will be a lot of digging though, with no guarantee you will find what you are looking for.  Good luck!

    What are you studying?  

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  • ScienceStudent
    ScienceStudent Member Posts: 3
    edited November 2011

    Thanks, i'll have a look now! I am studying Biomedical Science...

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  • orange1
    orange1 Member Posts: 930
    edited November 2011

    Just saw this in 2011 SABCS poster abstracts :

    P1-12-07Pharmacokinetics (PK) of Trastuzumab Emtansine and Paclitaxel or Docetaxel in Patients with HER2-Positive MBC Previously Treated with a Trastuzumab-Containing Regimen
    Lu D, Modi S, Elias AD, Agarwal P, Yi J-H, Guardino AE, Althaus BL, Girish S. Genentech, South San Francisco, CA; Memorial Sloan-Kettering Cancer Center, New York, NY; University of Colorado, Aurora, CO.
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