Who's on Kadcyla/TDM1?
Comments
-
Good morning everyone! I am saddened to say that my run on Kadcycla has come to close. My onc. believes it has done "all it can do" so she immediately switched me over to Herceptin & Navelbine on a 3 week cycle. Hopefully, God will continue to bless me and help me tolerate this new drug (Navelbine) as well as I did the Kadcyla. Oh and to add insult to injury, the darn lymph nodes enlarged so fast that they caused a blood clot around my port so I ended up on a blood thinner as well last night-ugh!! I thank you from the bottom of my heart for all the support, guidance (and even laughs), you have given me during the last 1 1/2 years. Sending you all big hugs
Thanks again! Fran0 -
Good luck Fran!
0 -
Fran, Our thoughts are with you. I hope that you tolerate this new combination well.
0 -
Hi All-just an update- so far, this new combo is a bit tougher but still manageable. Lots more fatigue and just generally not feeling well over the weekend but I bounce back during the week. Hope you all are enjoying the weekend
0 -
Hi All -
Long time lurker, been reading here since my dx in 2015. This place has really helped me realize that life doesn't end with a stage iv dx.
I started Kadcyla 6 weeks ago and just had my third dose last Wednesday. Was on Taxotere, Herceptin and Perjeta for 3,5 years and had a good run. Must say that I tolerate Kadcyla much better than THP. The only side effect is fatigue for 6-7 days after the infusion, but that's it. The food is tasting good again, no diarrhea and my hair starts growing back!
The next scans are scheduled for october, but since the last blood result showed my CA 15-3 dropped from 60 to 36 and CEA from 26 to 6 I'm cautiously optimistic.
0 -
Wife had SRS and WBRT which helped but the brain mets started spreading again. In the last year, went through IT Depocyt (had partial response but it was discontinued), then tried IT Methotrexate/IV Herceptin, IV Gemcitabine/IT Herceptin, Injection Eribulin/IT Herceptin with no observed response... now trying IT Methotrexate/IT Herceptin ans asking about Temodar...
Anyone with BC brain mets with success using T-DM1?
0 -
When I was on Kadcyla for almost 4 years (TDM-1), there was a lady at my chemo center whose brain mets disappeared after several months of Kadcyla.
0 -
Hi Denny,
Hi
Just wondering what to expect next. I can go any I'm overwhelmed. This caught me off guard because I had 2yrs of remission.
I need hope. They are ready to give chemo again. Abraxane?
I do not know how they can just throw me on this without giving me options.
They literally just had me scheduled for chemo.
I had extensive gene testing (Caris) I feel no one is even using the information.
No Biopsy of the liver just juice me.
I want to survive. I feel like they are looking in a book and throwing their hands up figuring it might work with no analysis.
Markers just went up.
Hx below again
I don't have time to figure out whats going to work.
Liver 3 large 1 small
4cm largest
6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2-
Hormonal Therapy 6/5/2009 Arimidex (anastrozole)
Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast: BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)
Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+
Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left
Targeted Therapy 2/1/2014 Herceptin (trastuzumab)
Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)
Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane)
Skin mets Sept 2015
3/2016, IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation was finished . Pet scan then revealed left lymph node involvement. Her2- estrogen + progesterone-
Ibrance and fasoldex 2yrs
It shrunk to nothing markers normal no Ca.
But now on
10.10.18 markers up
Liver mets
Sorry for whining.
0 -
Hi Denny,
Just wondering what to expect next. I can go any I'm overwhelmed. This caught me off guard because I had 2yrs of remission.
I need hope. They are ready to give chemo again. Abraxane?
I do not know how they can just throw me on this without giving me options.
They literally just had me scheduled for chemo.
I had extensive gene testing (Caris) I feel no one is even using the information.
No Biopsy of the liver just juice me.
I want to survive. I feel like they are looking in a book and throwing their hands up figuring it might work with no analysis.
Markers just went up.
Hx below again
I don't have time to figure out whats going to work.
Liver 3 large 1 small
4cm largest
6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2-
Hormonal Therapy 6/5/2009 Arimidex (anastrozole)
Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast: BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)
Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+
Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left
Targeted Therapy 2/1/2014 Herceptin (trastuzumab)
Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)
Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane)
Skin mets Sept 2015
3/2016, IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation was finished . Pet scan then revealed left lymph node involvement. Her2- estrogen + progesterone-
Ibrance and fasoldex 2yrs
It shrunk to nothing markers normal no Ca.
But now on
10.10.18 markers up
Liver mets
Sorry for whining.
0 -
Hi funthing,
Recurrences do happen. Take a breath. Abraxane is a good chemo and might do the trick quickly. A liver biopsy will delay your chemo and they have all of the facts needed from your extensive bloodwork.
In 2004, my liver was filled with mets, with the biggest one being 9cm, and I had statistically had a year to live. But a clinical trial of Gemzar with Herceptin cleared my liver in only 9 months.
I am sure that your liver mets are very small at this point, so have faith that the Abraxane will work.
Please keep us posted!
Denise
0 -
Hi Denny,
Yes smallest 4cm. 2 others are close to the largest so close you can not distinguish the borders.
Then I have some tiny ones and the left axilla node.
My fear is for them to just give me chemo, it did not work the first time.
Skin mets 1 month after chemo.
After the radiation for skin mets. I ended up with left node in involvement after radiation to chest wall.
I never had cancer on this side.
Now 2yrs later liver mets.
I just want them to get the right one. Slightly confused how they pick my cocktails when there are so many to chose from. Mine changes receptors.
Biopsy. I thought would be key since the first time felt haphazard.
Thank you as always ........your wisdom and composure.......relaxed me........I was freaking a tad.
0 -
I am certainly not an expert but I have spent 16 years advising Stage 4 and recurrence ladies through the ACS program of Reach to Recovery as a volunteer.
Abraxane is a good all-around chemo. In fact, a lot of different chemos work well for the liver. I don't think that Abraxane was even being used in 2004, since it is newer.
I just checked-it was approved in the US in 2005, but that might have been in clinical trials.
0 -
Denny
Your sound advice is music to my ears.
Another tough choice. I have the opportunity to go to MD Anderson or of course stay where I'm at.
I'm afraid if I do not go big I may regreat it.
You can private message if need be.
0 -
I could always go to the big Pittsburgh Hillman cancer center, but I can get the same chemo closer to me-about 7 miles away. The clinical trial that I was on for 8 days (Poziotinib) was available at Hillman, and also to my chemo center.
No way do I want to drive into Pittsburgh!
I would never go to the CTCA places for so many reasons.
So you could just ask your onc if MD Anderson would have any better treatments available. My onc consults with the oncs at Hillman for my treatment. Turns out that I have often been the subject of their conversations since I seem to be quit a miracle to have been on chemo for 16 1/2 years.
0 -
Hi all,
Glad to find this thread. Received the information yesterday that my pet/ct scan from last week shows slight progression of bone mets. Consequently, MO switched me to TDM 1 and I received the first infusion yesterday. Prior to this I have had 6 months on Navelbine H+P - was hoping I could have stayed stabile on that regime a bit longer.
I am feeling ok physically, but a bit overwhelmed about the news of slight progression.
Navelbine did give me a lot of gastrointestinal side effects, hoping that TDM 1 will have less of these.
I will be looking further into and following all the valuable information on this thread. Hoping this treatment will get me to stable. Otherwise, MO did say she has more in the 'drawer'.
Meja
0 -
Hi Meja. Glad you found us here on the TDM1 thread. Hopefully you will find this drug manageable and without too many side effects. I’ve been on it for about a year and a half - maybe closer to two years - I’ve lost track,but I do find it fairly easy to manage. That said, I’ve had a few slight progressions while on it but so far, we have zapped them with SBRT in order to extend my time on TDM1 for as long as possible. My MO also says that there’s are many more things to try when this one fails but hoping that’s not for a good long time yet. M.
0 -
Thank you Margarita,
Had my first infusion Tuesday feeling extremely tired 💤. Just wondering, - for me it’s not the worst SE, but can anyone comment on what to expect, in relation to duration and the next infusions ? Also what about hair thinning/loss ?
We are having beautiful autumn weather here in Denmark, so despite the fatigue, I just managed a lovely sunny walk by the sea.
Take care, Meja0 -
I was on Kadcyla for almost 4 years with no hair loss.
Watch for nose bleeds and if they start, try not to blow your nose. Kadcyla thins the linings of the nasal passages so the capillaries are too close to the surface. The best thing for bleeds is to put a bit of Afrin on a Q-tip and swab the inside of the nasal passages. It constricts the passages and halts the bleeding. Or you can spray Afrin into the nose, when needed.
0 -
Hi Denny,
Wow 4 years !
Thanks for the tip on how to manage nose bleeds. I am experiencing this, but not to bad (yet), - good to be prepared, - if it gets worse. Glad to hear that you didn't experience hair loss, I know there are worse side effects, but still.....
The fatigue I was experiencing has lessened, so I am feeling pretty good. The second infusion will be in 10 days.
Have a great weekend.
Meja
0 -
Meja,
sorry about the bad news. What did your progression consist in? Is it still just in the bones?
I didnt know TMD1 was approved for breast cancer in Europe. Thats good to know its there as an option!
0 -
Hi Daniel,
Thank you for asking, - still just in the bones (a few small spots) and described as a slight progression in the pet/ct scan report. My MO is very diligent, so she wanted me to move on to TDM1. TDM1 is the recommended second line therapy for HER2+++ MBC (at least in DK). She says, she has plenty of additional approved treatment options 'in the drawer'. We did briefly touch upon possible clinical trials for the future, so she set me up to have a sample of my tumor tissue screened to see if LiPlaCis from Oncology Venture could be relevant and 'added to the drawer' for the future - I will know within a month or so, whether this is an actual option to consider looking forward. All types of MBC are screened (HER2 +++/neu ER+/ER- etc). But for now, we agreed on sticking with approved products.
Hope all is well with your wife Leslie.
0 -
Thank you everyone for posting in this forum. It is comforting.
I have been on Kadcyla for 7 months for brain mets. I had surgery on one tumor and radiation on another. The neurosurgeon is seeing what he thinks is necrosis from the radiation. I've been having brain MRIs every two months and have another one in another six weeks. They will be adding on a spectroscopy again to, hopefully, confirm that what they are seeing is necrosis as opposed to a an active tumor.
I am keeping my eye on what everyone's next steps have been post-Kadcyla. I hope that it will be effective for awhile as it is so tolerable.
Greatly appreciate you being there.
0 -
Belperron,
After 7 months of treatment I am glad to hear that you find this treatment tolerable.
Hopefully it will work for a long time.
0 -
Hi all, new to this thread. I have been on Kadcyla since July 2018 and have tolerated it very well. The hard part was being on Tamoxifen at the same time. Stopped it due to leg cramps of the horrendous kind, and now been off for over a month. Just started Aromasin and hope that the SE's are more tolerable. Hope to stay in touch with you all since the post I was on for rads kindof disappeared once we were done and I have been wandering around trying to connect with others again.
God Bless you all and keep your head up and hope fervant!
Angelsgal
0 -
Denny 123,
So glad to hear you were on Kadcyla for so long. I'm presuming you were on it because it was effective.
Meja,
Thank you for your good wishes. I hope you continue to feel less fatigued.
AngelsGal57,
So glad your are part of this forum,
A happy holiday to all.
0 -
Hi All, new to this thread. I had my first treatment of Kadcyla 2 weeks ago. 10 days of high to medium high fevers and then, blood work came back--my liver function declined. Going in for more specific labs but I think I have already "failed" on this drug. I am hoping there is something else?????? I have done Tykerb and Navelbine while in stage 4. feeling a bit down about it. Q
0 -
Belperron,
Kadcyla worked for me for 4 years and even put me into a brief NED. When my chest node tumors got too big a year ago, I did Foundation 1 testing which showed my tumors to be BRCA 1 positive Somatic (not whole-body germline). So I then qualified for Lynparza. (I never did start on it though)
Meanwhile (before the testing was complete) I was put on a clinical trial Phase 2 of Poziotinib which only lasted for 8 days for me since my SE's were severe. However, those 8 days obliterated my tumors and I am now NED and on Xeloda and Herceptin for maintenance.
What a roller-coaster ride of almost 17 years of MBC de novo!
0 -
Denny123, that is some roller coaster ride to be sure but SO glad to hear you are now and still NED. That's just fantastic!!
All, and especially those new to this drug/thread: I'm also doing well. Not sure yet that I'm NED again but about to go for my 39th Kadcyla infusion. Over the two years I've been on this drug, I've felt pretty good and had fairly minimal and manageable side effects. I've had two minor progressions one in my L2 spine and one in my psoas muscle. Both we're treated with SBRT so that I could remain on Kadcyla since it seems to be working for the rest of my body. So far, after nearly one year post-SBRT, my spine shows no sign of disease though due to radiation related changes, this was not so easy to ascertain. I'm told there was lots of re-reading of my scan results before my team arrived at this conclusion so I'm sure hope they are right! The psoas muscle outcome will not be known until my next scan next month since I only just finished that radiation treatment. My fingers are crossed for a complete resolution even though the RO said that the treatment was not viewed as curative. My preferred state of mind is denial so I'm always and still hoping for a cure but I'd be thrilled with NED for now.
I just received the results of my genetic testing. This is going to challenge my little chemo-brain to even begin to understand. It's interesting though.
Hang in there ladies and hope Kadcyla works well for you too! I think someone was concerned about their liver and/or kidney function numbers. Myliver function numbers go up and down. My MO says she doesn't worry about them unless they are elevated to the point of about triple “normal" range but my kidney function hasn’t changed while on this drug.
Margarita
0 -
Hello ladies,
Great to hear that you either did or are doing well on Kadcyla.
I had my second infusion 10 days ago; experienced some fatigue, but not as bad as the first time, and a few days of constipation. Also some of my liver numbers were slighty elevated after the first infusion, so I am glad to hear that this shouldn't be a point of concern
I hope we all have success with our treatments.
Take care.
0 -
Dear All,
Could any of your guide me on below as i am not getting a satisfactory answer from my consulting doc.
My mother was diagnosed with Metastatic Breast cancer which has spread into her Liver and Bones. Through recent Chemo sessions her Bone mets have reduced drastically but Liver mets have shown no improvement. Her Chemo had additional drug Perjeta, which initially along with Chemo showed results but when was given individually had no result.
Now the doc has suggested to start with Kadcyla. She had her first infusion of Kadcyla last week ( 7 Dec 18), but due to so called known side effect she is not keeping well. She is experiencing nausea, head ache, body ache, loss in appetite and constipation. I was reading though the side effects and one of the major one is that it impacts the liver functionality. Since she has Liver mets, will the drug Kadcyla be effective for her or will deteriorate her liver to more worse.
Your views would be much appreciated. Thanks in advance.
Rohit Sood
0
