Who's on Kadcyla/TDM1?
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Thanks for the info, really apreciate
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Thanks leftfoot. I started the Xeloda today and also had the first of my weekly tx of Herceptin.
The tumors are pressing on the outside of my left lung and it is partially collapsed. Fun times.
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Hey ladies! well i am next.. going off of kadcyla. my nodules (2) are very small. the largest nodule of the 2 when we first found was like 4mm. In the 17 months since found 2 nodules on ct scan it has now grown from 4 mm to 20 mm. so it has doubled in size in 17 months I know this is still very small less than 3/4" however we dont want to keep staying on kadcyla and it keep growing. so.... gonna see if insurance will approve me to go back on herceptin and prejetta. if no go... I will go on herceptin and doc says the lowest dose of xeloda. I am so very grateful that I have NO new nodules and that my 2 nodules are small and caught what I think are early. hate to leave kadcyla as the SE's have been very tolerable but I also even as small growth as it is dont want to risk this cancer to keep growing if we can take action and stop that get me stable. either way perjetta or xeloda... gonna be some diarhea (sp) eeek. I will continue to stop in here who knows I may be back. Denny... girl... might be seeing you soon on the xeloda board.
wishing you all the very very best.
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DL3,
Sorry for the growth. I am on the lowest dose of Xeloda...2,000 mg per day. And so far, I am good. Had a few waves of nausea, but no puking.
No diarrhea yet and I am still using stool softeners, thanks to Kadcyla. I found a Xeloda group on Facebook that has 843 members and daily postings. Lots of information with on-going postings.
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Hey DL3-so sorry the Kadcyla isn't quite doing what it is supposed to-damn! I am happy to hear that no new nodules are present but it does stink that the others are "misbehaving". I do wish you & Denny all the best moving forward and that the SE's are tolerable. Prayers to both of you....
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Denny and Fram Thank yo ladies.
I should have added earlier will add now.... my AST has been slowly rising all along I had mentioned that on here while back. and on my last infustion (early february) m Onc said... if rises much more we will be reducing your kadcyla or taking you off and put on another chemo. I think the combo of rising AST and some on the ALT too ..all other bloodwork is good and the continue teeny growth showing each ct scan ... doc decided time to change.
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Girls, I was approved for herceptin and perjeta. so I will give this a go! i had perjeta originally in 2015 TCHP chemos ... and I told my onc I wanted to try that first before other treatments ... he said dont think you can get back in to perjeta since had it already herceptin ... yes you can do that not perjeta. well because I RESEARCH and i read others information from the boards.... I had hopes that I could get back on the herceptin and perjeta wagon and ..yay I did. infusion gonna be a little bit longer but I can deal with that.
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if I could just get rid of these 2 small stinkers.... I can get back on kadcyla
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Thanks Fran.
Doing okay so far-some nausea, hands are a bit sore, but no cracks yet. But I am only on day 6.
DL3-I had progression on Kadcyla, but still stayed on it until the tumors got a lot bigger.
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Hey Denny123... well my onco was concerned because in reality my 1 of 2 nodules grew well over 2 x's since initial find in sept 2016. from 8 mm to now 20 mm to me not a lot but he says should not stay on treatment if more than doubles. so i guess even tho small he still views as more than double. how are you doing with xeloda? you keeping the hands and feet moisturized right? I not looking forward to perjeta so much as i think it gave me diarhea when I had it initially in 2015 as my TCHP chemos. but I will ask for a stronger med than imodium ha. and really watch what foods I intake day of and after treatment.
I hope all of you ladies are doing well.
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DL3-my nodes grew from mm size to now 2cm x 3cm. Guess it is about time to seek a new chemo. I am doing okay on Xeloda after 7 whole days-no hand-foot stuff yet. I have always used lotion constantly, so that is not a problem.
Kadcyla left me so constipated that I am still using stool softeners even though my last Kadcyla was the end of Nov.
So maybe when/if I get diarrhea, it will even out. My friend several years ago, on Xeloda, used activated charcoal, OTC which worked better than Immodium.
I have a little nausea, but had it even when I was totally off chemo.
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Denny .. my 20mm is = to a 2.0 cm i just looked it up. that size is considered small. but did I read somewhere you said it is effecting your lung?
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Gee-I wish they would use inches like I learned in school. The tumor above my heart joined with the one beside my left lung, so it is an upside-down "L". The one beside my lung is apparently the reason why there is a partial collapse.
Maybe there is another reason, and I will ask my chemo nurse today when I go for my Herceptin.
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Denny, no kidding on just tell us inches not mm not cm . i can relate better myself! Gah!!
Hope your day was very good!
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DL3-my day was good and I just got Herceptin. My nurse tried to figure out my scans, and it seems that my collapsed lung part is on the bottom, so maybe the nodes didn't cause it???
And my latest scan report said that the mediastinal adenopathy is resolved??? My nodes are clear??? So I asked her to ask my onc to check out the latest report and let me know what is going on. It was a different type of scan than I usually get.
Hard to believe that my 8 days on the Hellish Poziotinib got rid of the nodes! Not going to count my chickens yet though.
I am doing okay on Xeloda-no problems yet.
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I am on a Stage 4 BC group on Facebook and a lady has been accepted for the Super Kadcyla (DS-8012A) Phase 1 clinical trial.
I urged her to join this site, but she is on that group, the Inspire site an a site on Facebook that I just requested to join, called "Innovative treatments for MBC".
So I will follow her progress and report it here.
According to my chemo nurse yesterday, once a tx clears Phase 1, it is given a real name instead of a number.
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Yippeeee Thank you for the update on DS-8201 Our Super Kadcyla!!!!
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Thanks so much Denny! I do hope that Super Kadcyla turns out to be another effective intervention!!! Please wish the woman much luck and good wishes from our group
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Sure will! I did my best to get her to post on here.
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YAYAY! I am almost in remission with just a tiny bit of cancer in my left upper lung node. What I didn't know for 4 years was that the cancerous nodes were IN my lung. I guess my onc assumed I knew that???? He always said the nodes were above my heart, so I assumed they were in a space somewhere.
And the clinical trail from hell, Poziotinib is what did it...8 days of chemo. But I had a severe reaction. So the stuff really worked well, but should be in a lower dose.
I will continue with Xeloda and Herceptin for maintenance.
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Fabulous news, Denny! Congratulations!
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Denny - Hot Damn!! That is great news!!! It is great that the hell you went through was worth it! If you can get rid of that little bit that is left, would they consider dropping the Xeloda?
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Oh Denny, I'm so happy the Poziotinib worked for you. I know it put you through hell, but remission is a beautiful word! I hope this new treatment is easier and maintains things, but if necessary, you can go back on poziotinib at a lower dose and really knock it out! It's always an option and great to have that option! I know you've been battling this monster for a long time, and I'm thrilled things seem to be turning around for you!
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Wahoo!! Such awesome news Denny!!! So truly happy for you!!
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Thanks ladies! I think I set a new record with cancer-killing.
Kkrenz- Herceptin alone won't keep me in remission, since it didn't work very well when I had a brief remission from Kadcyla.
So far the Xeloda has been okay after 12 days on it.
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Denny!
I was so hoping there was some good coming along with the horrible SE's you experienced. Keep us posted; I know you will. Your 11-year story is often a huge inspiration for the rest of us (I'm 7 years MBC Her2+). Just sorry that you seem to end up being a guinea pig of sorts as you work through all this.
Miriam
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Denny, a quick question;
Is that Facebook site she's on called "MBC trials and innovative treatments"? I'm assuming it is as this wording is the closest to what you mentioned.
I may be at the end of my Kadcyla run soon (need a CT scan in April) and want to stay on top of all these TX's coming out.
Thanks so much!
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Thanks Miriam!
Correction-I am a 16 year survivor! Yes she is on the innovative site, and I just got accepted in there after waiting for 5 days. I forget her name, but she is also on the Stage 4 MBC Facebook site.
Gemzar got rid of my liver mets in 2004.
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Denny, such fabulous news! Really happy to hear it!
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Denny.... AMAZING news!! LOVE this news for you sweet lady!!! XOXO
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