Who's on Kadcyla/TDM1?
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Texas survivor- I get kadcyla every 3 weeks by infusion and take tucatinib every day. My SE are fatigue ( not really different), loss of appetite, and sometimes I feel fluish several days after my infusions my MO thinks the tucatinib is responsible for my lack of appetite. I know the jadcyla is what makes me feel fluish as I had this reaction prior to starting tucatinib. Oh snd I have some joint pain.
Overall, this has been a very tolerable combination and I have been on several.
Best of luc
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hello Leftfootfor... can you share what your current treatment is for? I was under the impression that tucatinib was combined with Xeloda and herceptin? I’m currently on TDM1 but there has been progression so I am looking into tucatinib. Also, thanks for sharing your side effects, that’s always one of the most scariest parts of switching treatments. Xx
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Riro11- I am on kadcyla and tucatinib. I get kadcyla once every 3 weeks by infusion and take 4 tablets if tucatinib daily ( 2 in the morning, 2 in the vac evening).
I have both brain snd liver Mets. Ii am on the tucatinib gir the brain Mets and the kadcyla for systemic treatment.
Recently I had a line tumor show up on CT scan C snd confirmed on zoER scan. It looks like it’s in a medialstinsl lymph node but isn’t in a place to biopsy or discrete do not completely clear as to location. My NO decided to keep me on my current treatment s this was the first non brain tumor I’ve had in several years. KDcyla seems to be doing its job stabilizing my systemic cancer. It did not help with my brain Mets hence the tucatinib.
I have gone through all of my other options for brain Mets except WBR so we are staying on tucatinib until it is proven to be completely ineffective.
Does that help?
I’ve had brain snd liver Mets for 8.5 years with good amount of time spent at a stable stage.
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Leftfootfor... thank you so much for sharing this with me and for giving me hope as I am going through a rough time right now. I am on Kadcyla too but it has failed my brain mets from spreading, and I am terrified. I have 3 tiny spots on my brainstem and I feel death breathing down my neck once again. Kadcyla only worked for 14 months.. So I am a bit disappointed to be honest.
Also 8.5 years? WOW
that’s amazing. 0 -
toro- I’ve zapped lots of tiny tumors over the 8.5 years- none were in my brain stem so I don’t have experience for that. Neratinib snd tucatinib nigh get good results for brain Mets. Neratinib is harder on you for mostly digestive reasons. I am hopeful that though can take either of these drugs in combination with a systemic one. I had to go to CA for a clinical trials to get access to this protocol. Then, tucatinib came to market so I was able to stay home. Plus I got kicked out of the trial- long story. It was ok because Covid hit snd I was able to receive treatment at home.,
I am thinking of you and wishing you all the best.
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Leftfoot, thanks again for your kind wishes. I am hopeful I get to see many more moons even with these little brain mets popping when I least expect them. Did lose a lot of hair when doing SRS?
When I had radiation last year to treat an1 cm lesión on my cerebellum I lost about 40% of all my hair!! It was such a bummer.
Also, glad you’re able to stay home now and get treated locally. I am currently living overseas but with this new progression I might have to fly home.
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Hi Trish, I have only had 3 infusions so far and have experienced mild constipation that prune juice helps with, fatigue but not every day, some nausea but mild. I have taken Compazine 3 times and it works. Also mild stomach pains at times but doesn’t seem to last long. I’d like to hear from people who have been on it a little longer because it suppose to be cumulative. I had neuropathy before starting and have been going to an acupuncturist so it hasn’t progressed. Hope that helps.
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I haven't posted in ages, but here goes, since I think this is important for others to be made aware. I'm a long hauler on Kadcyla since January 2016, but am stopping the Kadcyla due to the development of cirrhosis with esophageal varices, and mild ascites.
I always thought that I'd probably be on this drug forever, as it was keeping me NED and pretty easy to tolerate. Little did I know, the damage that was going on in my liver! I've been dealing with low platelets for a few years now,but all my other labs have been mostly normal. I just attributed the low platelets to the fact that my bone marrow was just tired from having so much chemo over the last 25 years.
In 2020, I took a Kadcyla break in order to have spinal fusion surgery, and during that break I developed the ascites (confirmed on PET scan, and an enlarged spleen was also noted) Thinking that my cancer had returned, I immediately resumed the Kadcyla while waiting to have a paracentesis, to determine if the ascites were malignant or something else? On the day of the procedure, as I'm in the hospital and all prepped to go, the doctor does a quick ultrasound and determines there is not enough fluid to perform the procedure safely.
So, I assumed that the ascites must have been malignant, and were already shrinking after being back on Kadcyla! After a few more treatments my platelets keep dropping, and I'm feeling more and more bloated, so oncologist orders an abdominal ultrasound, which shows advanced cirrhotic changes!
I was referred to a GI Dr. and he did an endoscopy yesterday, which also revealed the esophageal varices. So, no more chemo for me, but have messaged my Onc to request going back on Herceptin and possibly Perjeta, so I at least have something possibly working for me.
Don't mean to be a "Debbie Downer", Just wanted to make folks aware, that this is a possibility with Kadcyla even though my AST and ALT, and other labs were mostly always in the normal range. I think the real red flag was the enlarged spleen and steadily declining platelets, even after taking Kadcyla breaks and dose reductions. An ultrasound done 2 years earlier probably would've shown the beginnings of cirrhosis, but then, when you're stage IV, I guess it comes down to "Pick your poison"
My one hopeful thought that I'm hanging on to, is the fact that all of my scans have come back NED since being on Kadcyla all these years, and just maybe Kadcyla has wiped the beast out!
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