TDM1/Kadcyla Experiences
 

I know a few of you were on the trial or have gotten this drug.

Seven different chemos and a liver resection have not stopped my liver mets from progressing. Currently, I have been on gemzar, herceptin, zometa and perjeta. But, I am no longer able to tolerate the gemzar. (In fact, I've never been able to complete a full round.) My doctor is going to put me on TDM1 as soon as he gets it in his office.

Even though I have recalcitrant liver mets, it's still only in the liver, at least it was at last PET. If we can shrink this sucker down off the structures its endangering, maybe we can do RFA again. (I had microwave ablation with my resection).

I am curious to know if anybody who failed on so many drugs got any use out of TDM1? Did you progress, regress, or go NED, or what? Were there any side effects, like with chemo? What was your experience?

I am trying not to hold out too much hope since nothing has worked for me. I do want to see my son graduate from high school, and it would be nice to feel well enough to take him on a college visit or two, which I currently am unable to do.

Thanks in advance.

Re: TDM1/Kadcyla Experiences
 

Hi Coolbreeze
You will see in my signature that I did not have all the possible combos but had many before TDM1. Nothing ever worked well for me. Taxol and Herceptine did not work at all for example in my neoadjuvant chemo.
I was in a terrible state when I started TDM1. I fought for it because I had read that even for certain Herceptin resistant women it could work AND because I did not feel strong enough to go through hard chemos. (and because you keep your hair). It is working for me for now.So Coolbreeze it is worth trying. I really hope it will work for you. Michka

Re: TDM1/Kadcyla Experiences
 

Ann,
I have mets all over and have progressed on many chemos. I have been on tdm1 since nov. I have found it easier than other chemos. Not easy but easier. It is all relative:)

I have had good results so far. Not much regression or NED but no major progression either. I am content with that for now. Just want to stay alive.

Re: TDM1/Kadcyla Experiences
 

Ann,
I have remained stable with TDM-1 for 3 1/2 years. I progressed with Tykerb and Xeloda and Navelbine/Herceptin. It has not been a difficult combo for me I'm hoping the best for you!
Kathy T

Re: TDM1/Kadcyla Experiences
 

Those of you ladies who are stable or regressed - where is your cancer? Mine is in the liver. Would appreciate details.

So did you have any side effects? Exhaustion? Nausea? Heartburn? Anything?

Thanks.

Re: TDM1/Kadcyla Experiences
 

Anne, in the original Phase 1studies, patients had had a median of 7 prior therapies (I asse but do not remember if they all included chemo) with a rage is something like 3-12. Where I went on the phase 2, which also was tdm1 as single agent, I was not super heavily pretreated but it worked for me for 3 years before pooping out. Assuming I am able to get some sort of contrôlée my iPhone must think I'm French) I'd be I'd be interested in trying it again. One step at a time, tho!

Also, I know many have sufferers with side effects but honestly for me they were minimal, predictable and manageable

I'm so hoping his will work for you! I think you will be able to handle it well

Take care, chris

Re: TDM1/Kadcyla Experiences
 

Ann,
My mets are mostly bone, possibly lung but not biopsied. The side effects for tdm1 for me have been thrombocytopenia, increased liver enzymes, and regenerative nodular hyperplasia of the liver which was biopsied and may cause problems as it continues to grow, but slowly. I'm sure fatigue is a problem for me but I am getting older--happily!
Kathy T

Re: TDM1/Kadcyla Experiences
 

Ann,
I have mets in liver, brain, leptomenginal, lungs, bone. My side effects are fatigue, some nausea. It is better than the perjetA combo, Navelbine etc for me.

Re: TDM1/Kadcyla Experiences
 

coolbreeze, you know Lorraines cancer was in liver ( 7 measureable tumors ) and all around liver , ( adrenal , right kidney area , bile duct ) and is gone , ned over a yr. , just about 28 months of good response. i hope we can add perjeta to it soon for those who have some progr on t dm-1. but that will take Pressure on This FDA. We picketed the Commissioner here in Boston on Fri. Right now we are where we could have beeen 3 yrs ago. we could be combiing it w/ other chemos by now, finding out how it measures up to taxanes, where is th urgency w/ This FDA. why cant t dm-1 be combined w/ other chemos , like avastin , tykerb for brain mets. The reporters there told the comm. we wanted to talk w/ her . She ducked out the back door and caught a cab.

Re: TDM1/Kadcyla Experiences
 

I have no experience with T DM 1, but I think it is worth a try. Hang in there.

Re: TDM1/Kadcyla Experiences
 

Phil, I have followed your story and it seems like your wife is one of the most hopeful stories out there. The "Assertive Cancer Patient" was on the trial too, and she had it in her bones, lungs and liver and it got her to NED. Unfortunately, it did spread to her brain and she's been dealing with that. But, she was weeks away from hospice when she got TDM1 and so got an extra couple of years for sure.

I also know that there are folks that it didn't work for at all. I am just hoping that for once, I am in the "works for" category. Even if I don't get NED, I just want stability and I would like to be able to function again. My poor son, I feel so bad for him. He's 16 and his mom has been sick since he was 12. He barely knows anything else. I want to do the college stuff for him at least. I think it would be better if I pass away when he's out of the house and starting a new life and TDM1 sounds like it can give me that chance.

No chemo has been difficult for me at all, except Gemzar. My theory is my liver is getting too damaged from the cancer to process it now. But no proof of that so far - maybe it was just something in the gemzar.

Anyway, I'm trying not to get my hopes up too high but I want them up a little. Currently, I'm feeling a bit discouraged. I know for a fact that I won't live a year the way I've been feeling and the pain I've been having, if something doesn't work.

Re: TDM1/Kadcyla Experiences
 

Hi CoolBreeze,

I was on TDM1 and it did work for me for a long time, I have now developed new spots of concenr for which I will be receiving radiation therapy. Will post later, I haven't seen the neurologist yet.

Hopefully you will do just great on the TDM1. You have to!!!

Love,

Adriana

Re: TDM1/Kadcyla Experiences
 

Ann,
My history is similar to yours...I am on taxol weekly, herceptin and perjeta every three weeks...Tumor markers going down....Maybe you could try this combination...I keep pushing for radio ablation of the liver, but my oncologist keeps nixing it...Went to a NYPH seminar last month, showed how mediformin kicks cancer out of liver...maybe it's worth a try...used for diabetics and women with polycystic ovaries..apparently trials are showing it kicks cancer out of liver....I have scans late April
Eileen

Re: TDM1/Kadcyla Experiences
 

coolbreeze , let us know when u start that t dm-1. u have mostly liver involvement , like Lorraine, ( Lorrraine is not alone at ned,we know several with same result, i yr plus ned, several at at 2 -3 yrs ned , and several more at 4yrs ned and counting ). and many who got a kick from anywhere from 7- 9 months to 2-3 yrs , before re-occurence . like jeanne, assertive cancer pt, whom i have corresponded with . and, yes , there are many who don't respond at all. 40 % ?
the hard no's i have seen are the 38% ' complete , or significant ( 6mo's plus ) " response when the drug was presented for acc. appr. in 2010, then the 65% in EMILIA who had lived at " least 2 yrs " as of last Sept. those are relatively great survival stats for late stageiv, and the no.s will only go up from there . think of the reputation original herceptin has now , t dm-1 is better ! original herc cures 20% by itself, then many more w/ nasty chemos that cover the whole body , not targeted.
My " un-scientiific " educated guess, based on talks with dozens who have tried it, is t dm-1 may be a cure ( I stress MAY be ) for 20-30 % late stage iv right now, and another 20 % or so who can add perjeta, or other drugs , if This FDA and the co. get moving on full appr.
Then , when it can be given at first dx ? even better stats. i think it will supplant taxanes , won't that be glorious ! , no hair loss, mouth sores , etc.
works best w/ straight her2 , ( er +, triple pos. may need other drugs as well as t dm-1, KDR gets perjeta with it ) and when cancer has been contained to liver or one area , rather than lung, bones , mutliple sites. and our personal plan is to keep a strong dose for a long time, until something better comes along, to hopefully prevent re-occ., brain mets. it works really well w/ late stage iv , the researchers who work w/ it, and pts who have tried it are the best sources of info. Praying For Awesome Results For You and Many Others !

Re: TDM1/Kadcyla Experiences
 

Oh my, I can't tell which "Ann" to whom you've been replying... I'm Ann too!
But I do want to add that I've recently started TDM1 - my 2nd session will be 4/12/13. I'm hoping its good! The first session seemed to get fatigue for me. And I'm wondering if anyone has had ANY word-finding difficulties from it. I'm optimistic tho!

Thought someone would also want to know that I'll be getting SRS (cyber knife) to get to one tumor 1.2cm, occipital lobe, this Tues (4/9/13). Hoping its all going in the right order. Best wishes to all HER2 buddies.

Re: TDM1/Kadcyla Experiences
 

Nice to see another Ann. :)

Well, I hope the TDM1 works for you, and your cyber knife is a success. I'll be staying on Gemzar for the time being, since I have had regression. We can keep TDM1 for next time I progress. I'm glad gemzar is working but I do find it a very difficult chemo. He is going to try our 2nd dose reduction to see if I can tolerate it better.

Good luck to those who are on it. I'm sure I'll refer back at some point.

Re: TDM1/Kadcyla Experiences
 

Well I am an Ann as well, and I really need to get my profile up to date on here! I have had noticeable regression in my lymph node size on TDM. Unfortunately my brain scan this week went poorly. The tumor regression I enjoyed while on Avastin/Carbo/Herceptin (a trial) has gone the other way. I have numerous spots in the cerebellum, which had shrunk by 70% with the largest at .5cm. That one is now 2.1 cm, and all the others are bigger as well. I am very upset by this, and really hope to avoid WBR for as long as possible. I have a long planned trip to Paris with my daughter on April 25, and my onc says it is safe for me to go. We will figure out next steps when I return.

Re: TDM1/Kadcyla Experiences
 

I am on cycle 4 of tdm1 after three years on herceptin, three months of navelbine in 2012, then 5 months of gemzar (hated both, but tolerate herceptin well). I have lung mets, and two large tumors in my right breast (declined mastectomy, had lumpectomy and radiation in 2005, stage 0, dcis, her2+++, er/pr negative, mets to lungs in 2011). Tumors in breast are 2/3 smaller, liver enzymes are up a bit, and PET due in May. Main side effect is fatigue- I'm used to feeling endless energy, though slowing down a bit (just turned 61). Have a low tolerance for discomfort....Overall, I'm having spectacular positive results from tdm1. Hope this helps some of you out there.

Re: TDM1/Kadcyla Experiences
 

hello you two ladies. I'm always sorry to hear any progressions after having TDM1 with all this new research with our women friends. maybe after I have my 2nd TDM1 tomorrow and after I get news about my SRS (cyber knife) from this week, maybe I'll be able to share good news. I'll keep watching your news too. Ann P

Re: TDM1/Kadcyla Experiences
 

I guess the dose reduction of gemzar has helped me. I am out of bed today although I can't say I actually did anything. Three years of chemo and I am just so used to being tired that my feeling great is another persons exhaustion. :)

My grans never really rose after my last doze of Gemzar in early May, only 1.5. So, he gave it to me anyway but we'll see if I get it next week. I won't do the colony stumulators anymore (leukine, neulasta, neupogen) so if it doesn't go up on its own, I skip chemo. So far, gemzar has been hard on my blood and I'm not even sure I've made it through one full round, but oddly effective on the tumor, so we'll keep trying. It could also be the perjeta - I wish we knew for sure as I'd love to just stop the chemo entirely and stick with perjeta. Maybe if I can wipe this tumor out entirely he'll let me.

TDM1 is definitely next though when growth starts again.

Hope you gals get good, long-term results on it.