Pl help:Failed perjetA, now TDM1?

[Sdgirl]

All,
I was
dx with mets in Feb this year and have mets everywhere--brain, leptomenginal , liver, lungs and bone. I have tried Navelbine and Herceptin and progressed. Then tried Taxotere, Herceptin and perjetA and have progression again. I am debating what to next. Should I try Xeloda and tykerb or Halaven? I also have an option of doing the TDM1 EAP at a site that is a couple of hours away. I am not sure if I wll get in because of my untreated brain mets but have an appt set up. If perjeta failed, will TDM1 work? the perjeta combo worked great for six weeks and I went into remission but right after six weeks, it stopped working. My scans yesterday at 14 weeks should progression everywhere. Do you any advise or suggestions on what to do next? I feel like I am throwing darts in the dark and nothing will work anyway. I have lost faith after doing this for only 9 months.

[Nancy L]

Dr Slamon told me T-DM1 has a higher success rate than Perjeta. It is what he wanted me to take. If you read the details about how this drug works, it is very very impressive. I am optimistic even though I know it is not going to fix the collateral damage I have suffered from this recurrence.

You must be going to the Highlands site. Patricia Ramos, the coordinator, is wonderful and very efficient. I can rejected from the Theresa trial they are running so I am driving 8 hrs to Stockton for T-DM1 EAP. Have had two treatments. I hope this drug becomes product very soon, you get accepted for EAP and it WORKS for you.

[KDR]

Hi, I'm Karen, welcome.
I am really sorry to hear that you have tried these combos but they have failed you. That doesn't mean everything or a different mix WILL. What does your oncologist recommend? T-DM1 is supposed to be approved shortly (as soon as December possibly). Don't lose faith and never think that what worked for one will work for the other. You are unique. None of us know how long a drug will work, what if it stops working, etc. One thing is for sure, new things are happening every day in labs across the world. So, as hard as it is, try to stay focused that you CAN and you WILL.

[Sdgirl]

Nancy,
Thanks. Yes I will be going to the Highlands site and spoke with Patricia Ramos who has been very helpful. I am not sure I will get accepted because of my brain mets but will discuss this with my onc tomorrow.

[Sdgirl]

Karen,
Thank you. I needed that pep talk. I am trying hard to keep the faith that something might work. I sometimes feel like giving up but every time I see my kids I know I have to keep trying. I feel like I am in a random game and nobody including the doctors know which tx will work. i just have to keep playing till I either get lucky or die.

[karen z]

Karen is correct. It is not possible to know what will work best for some and not others. We are all unique individuals and respond differently. Stay strong and stay informed. Let us know about your appointment.
K

[Pray]

I am so sorry Sdgirl, that you haven't had a tx work well yet. (note the YET) Please know that I am hoping praying very hard for you and your family. You are an awesome fighter. Hang in there!

Gods blessings to you.

Peace,

Nancy

[Pamelamary]

I can only reinforce what everybody else has said - you just need to find the treatment that works for you. Many people have had good results from the Tykerb/Xeloda mix, while the new ones like TDM1 don't work for everybody. Even the experts are "throwing darts in the dark" and we just have to hope we hit the target eventually.
Best wishes..... Pam

[DeenaH]

My combo of abraxane, avastin, herceptin and tykerb has taken me from the brink of death to new hope for some more of my future. I was on o2 24/7 just a week ago. Now I am only using it as needed. My cancer had spread throughout my lymph nodes in my lungs and chest, and I had developed pulmonary hypertension. A cardiologist at UCSF said if my next treatment did not yield a dramatic response I could die within weeks. Instead I was able to attend my sisters wedding on sat, without my o2! I am getting stronger e everyday. I just wish more doctors were willing to go outside the box with different novel combos. Just wanted to share since this combo is not standard of care.

[Paula O]

Wow, this is hard stuff. I wish there was no such thing as cancer or metastisis and none of us had to go through any of this.

SdGirl--hoping for an excellent oncology appt for you today and extraordinary insight and wisdom from your medical team for your plan of care. (((Hugs))) Please let us know how it goes. We care about you.

DeenaH-I am so happy for you with this combination having such significant, positive results. How wonderful that you could attend your sister's wedding without O2 and that you are getting stronger every day!

I have this sign above a mirror and I like it:
"Never, never, NEVER give up."

Paula

[schoonder]

Sdgirl,
Once accepted to T-DM1 EAP, would oncologist be willing to administer a small quantity of agent intrathecally to fight disease in its totality, i.e. get across blood-brain barrier, if that is even possible?

[KDR]

There should be a standard AndiBB template that pops up on posts like these.
Since there is not, please search AndiBB's posts. Note that she is truly a survivor in every sense of the world, as are many on this board.
Karen

[phil]

I dont think t dm-1 crosses bbb, so other tx's like wbr, tykerb, may be more effective right now, tdm-1 later.
deenas combo is interesting, and talk w/anniemei on Inspire. She is tx brain mets at MGH w. an avastin, carbo , maybe other chemos ? Dr. Slamons clinic at UCLA is a greast optuion for 2nd opinion on tx's.
Hope you are at a research hosp. , w/ a bc specialist , you need to be.

[Sdgirl]

I am at a research hospital at UCSD with a good team. My team of neuro and radiation onc recently completed six cycle of intrathecal chemo for my leptomenginal mets. They regularly scan my brain mets and are trying to push off radiation as far out possible since so far the mets are stable and asymptote attic. They are trying to conserve my QOL and want me to focus on controlling systemic disease. I am meeting my chielf oncologist this morning and will let you know what she suggests. TDM1 looks like the leading candidate but the concern is some other pathway has been dominant since Perjeta worked so well for six weeks and then stopped.

[Mary Anne in TX]

I'll be praying for brilliance for your doctors and good fortune for you. Sometimes when things seem so impossible, a little miracle appears. I'm believing in one of those little rascals appearing for you. ma

['lizbeth]

SDgirl,

Rats. Sorry you are on to the next treatment. I am wishing you much success with the next combo - perhaps it will be TDM1. Will say a prayer for you!

[Jackie07]

Be sure to let us know what your oncologist says. Hang in there.

[Nancy L]

DeenaH--Who is your oncologist at UCSF? I am planning to move back to No Calif soon. I like out of the box thinkers. how much Tykerb in your cocktail? Any problem with insurance for this protocol? Thanks

[Rolepaul]

SDgirl,
We did not see real progress until we got to 80 mg of Herceptin IT, and Carol in Malta did not see it until they got to 100 mg Herceptin IT. If you are getting less than 1.3 mg/kg of body weight, they are not giving you enough!!!!! Also, it took 60-90 days before the disease had good resolution on MRI scans of the leptomeningeal and brain. If you got 6 weekly treatments, you are not yet where you would see the impact. You need to keep doing these!

[Sdgirl]

Thank you all for your input. I wanted to provide an update. I did get into the TDM1 trial and start that tomorrow as my brain mets though still present are stable. I had my tumor re biopsied because the dr thought I may have been triple negative again but tumor is still her2 and her3 positive. The genetic profiling will not be back for few more days but the trial requires I get my infusion tomorrow. I am very nervous as this is the last silver arrow since perjetA failed and I have to leave my MO and travel somewhere else for tx.

[Sdgirl]

Rolepaul,
My neuro oncologist refuses to give me IT Herceptin. I have taken all the studies on this and emailed information that you have posted on this topic. He said he had given me prophalactic tx and it was enough for now. I am also battling progression in the liver and lungs and this has taken a back seat. The TDM1 trial does not allow any other tx. So I am stuck either way. Thank you for the information you post on this. I am going to continue to make the case with my doctor so we are ready.

[Jackie07]

Most of our members have reponded well to T-DM1 with little side effects. There're quite a few threads which you can locate by using the 'Search' button on the top bar. Below are two of them:

http://her2support.org/vbulletin/showthread.php?t=50518&highlight=T-DM1

http://her2support.org/vbulletin/showthread.php?t=53082&highlight=T-DM%21

[Pray]

I'm hoping and praying very hard it works. Gods blessings to you and your wonderful little family. Peace my friend.

[phil]

So glad you get to try this awesome drug . It is the strongest drug for her2, stronger than perjeta, which is an antibody, not a chemo, like original herc. t dm-1 is the first ever conjugate , antibody armed w/ chemo. there are others in early stage trials . has the " best survival stats EVER so far " for her2 bc. heres praying for great results !

[fullofbeans]

I had progressed on herc and tykerb and tdm1 kept me stable for a while. I also think it is one of the best option if you can have it. no one can know what will work for you but data shows that around 55% will not respond to tdm1 but this rate is lower that for the other drugs, so it is a good educated guess. my best wishes

[phil]

FOB , what about herc/nav, or herc gemzar , if you havent tried them. i know someone who progr on t dm-1 , switched to herc /nav about 4 months ago. doing very well, especially since they lowered nav dose to reduce s/e. some folks seem to have pos after -effects from t dm-1's blast , even if not total . deena h's combo is intersting too.

[deb808]

Hi SDgirl,
Hope that the TDM1 will work for you and beat back those mets. I also have tried several treatments and they all eventually stopped working. It's hard not to lose faith and the thought of starting yet another round of trtmnt is upsetting but you just have to keep trying. I may possibly get on TDM1 too at some point. It seems that is how to fight this disease, keep trying other treatment options until you find what works. We can only hope that somehow it will be figured out how to treat and manage this disease better. Stay strong and take care of yourself. My children are my incentive and inspiration to fight harder. Will keep you in prayers that this treatment will work.