Who's on Kadcyla/TDM1?
Comments
-
Denny- Haven't been on in a while but logged on to see how you were doing. So happy to hear about your wonderful treatment response
0 -
Hi there! Just started it on Monday for malignancy in lymph node which came up recently after progression of a tiny liver met. I have been feeling crappy but that is likely due to the lymph nodes pressing on a GI nerve and/or the fact that I got Y90 embolization about a month ago to the liver met. I am not happy about having to switch off of Herceptin Perjeta. I hope for few side effects.
0 -
Thanks ladies! There is hope for us! Lots and lots of hope!
0 -
I am doing okay on Xeloda and Herceptin. Some mouth sores and nausea (but not throwing up). The main side effects of Xeloda are the sore and peeling hands and feet, but so far I am fine.
Xeloda can also cause severe diarrhea, but I am still so constipated from my Kadcyla, that I am still taking stool softeners. So maybe I will eventually even out.
The best part is that I lost my voracious appetite, and I can surely stand to lose weight-about 12 more pounds to go to get to my pre-BC weight. The 15 pound loss from Poziotinib started that!
I will see my onc in about a month and probably have a scan in May or June.
Love to all!
Denise
0 -
love old like my time on this drug is done. It successfully continues to shrink my liver tumors but doesn’t cross BBB so now I have numerous brain lesions to deal with.
Trying to find that perfect mix of drugs.
Good luck everyone
0 -
Sorry leftfoot! Is Tykerb an option for you? It crosses the BBB.
0 -
Denny- I was in tgatca long time ago. My current MO doesn’t think it works. Might go back to Xeloda herceptin perjeta.
She’s trying to get me access to the new super drug tucatinib. Will know hopefully within a week.
Good luck everyone
0 -
Wow-I never heard of either of those! Keep Poziotinib in mind-the stuff that put me almost in remission in only 8 days. Definitely a lower dose-1 pill per day for 21 days, instead of 2 pills.
It is still in Phase 2 Clinical trial.
0 -
I realize this is a ridiculous complaint in the scheme of things, but I went from never having a cavity until cancer treatment to having one (or 4!) every time we take an X-ray. I get cleanings every 6 months and try to maintain better oral hygiene than I ever have in the past, but I still just found out I have a cavity that needs filling on a tooth that has a filling at the gum line from erosion. The dentist mentioned that I might need a crown if I have another issue with the tooth. I have to go back for a regular filling, which hopefully takes care of the issue. It's particularly annoying to me because I have to premedicate with antibiotics prior to dental cleaning/work. Anyone else have this problem and gotten any helpful recommendations to combat tooth issues? My chemo brain is blanking on the types of dentist that I read people on cancer treatment sometimes see- is it a biologic dentist? Chemo/radtioj/surgeries and I am tough but then almost left the dentist in tears.Any advice welcome!!
0 -
Chemo dries out the mouth, and that causes cavities. I used to go to a terrible dentist and all of the root canals and crowns that he did are bad.
So I was fortunate to find a really good, but expensive dentist 14 years ago. I do use pre-meds before invasive procedures, and have had bone grafts and pins for a partial....lots of dental surgery to fix what the quack dentist ruined.
So I am not sure if the cavities are new, or from the quack neglect.
I use Biotene daily for the dry mouth issues.
I have been on chemo for 16 years and it never prevented me from having procedures done.
0 -
leftfoot-did you get approved for Tucatinib?
0 -
Denny- no, I was 1 week too late. It is closed to compassionate care. My MO thinks it’s either because a Seattke company is purchasing rites to it, or the company is filing FDA paperwork for use. Either way, it looks like it might be available soon to more people.
The plan for me right now is to go back on Xeloda and Tykerb and to do gamma knife on all of my brain lesions ( about 17).
Thanks forasking
0 -
Thank you, Denny! For some reason stress and exhaustion have led to this being the proverbial straw that broke the camel’s back. Didn’t help that I got a huge nail in my tire leaving the dentist attempting to drive my car to the dealer to get the AC fixed. I think I need to use the biotene more frequently, as I had used it more for comfort rather than preventative for the dry mouth leading to cavities. Thanks for sharing your experience
0 -
I saw my onc this past Friday and the nurse was wrong-I am NOT in almost-remission. The lung scan that I had was for blood clots and the tumors didn't show up well.
Soldiering away on Xeloda, and I don't miss the Kadcyla nose bleeds at all!
0 -
Denny, sorry to hear about the nurse’s error. That’s a big disappointment but glad you are soldiering on! I’m sure you are happy to leave the blasted nose bleeds behind. I have one almost every day - ugh!
0 -
I’m still getting nose bleeds and have been off this drug forover a month.
0 -
My last Kadcyla was the end of Nov, and it took about 4 months for the bleeding to quit....it did taper off gradually as long as I didn't blow my nose too hard.
0 -
Just finished Kadcyla on 3/26/18 as CT Scans and "red patches" on left breast indicate it is no longer working.
My best wishes and prayers to all those of you who continue on with Kadcylal; it is a great drug.
I just started, on 4/16/18, Doxil with Herceptin and Perjeta so I will look to move to that thread. I will check back here from time to time.
Love,
Miriam
0 -
Miriam, so sorry to hear that Kadcyla stopped working for you. What are the “red patches”? Is that something that the CT picked up or it’s on your skin? How does it mean Kadcyla isn’t working? Just wondering. Good luck on your next treatment plan. I hope it goes well for you. - M.
0 -
For the past several months, on the bottom of my left breast (orig.tumor site), red blushing has been forming. At first, it looked like a bite mark (it wasn't, LOL!). Then it took up more space. A previous metastasis there has been raised but Taxotere took care of that back in 2014.
This blush is called a rash by my MO. Additionally, the last 2 CT Scans have shown more progression, sadly back in the original mets liver site. I had a brain tumor they found in August and removed. Balance is a bit iffy! But I manage quite well, just have to slow down.
Thanks, Margarita from Michigan!
0 -
So sorry Miriam! I pray that the new tx will work for you! Please keep checking back with us, as I have been. I am no longer on Kadcyla, but still wish to share and check in.
Denise
0 -
Miriam-my thoughts and prayers are with you! I do hope that your new line of treatment isn't too rough. Please stay in touch! Warmest wishes, Fran
0 -
Hey, all. Glad I found this thread been on Kadcyla long time now and recently developed a post infusion reaction. Apparently this is not uncommon with long-term use of a monoclonal antibody med like Kadcyla. Here is what happens.
-hour after infusion, got cold chills. That lasts a couple hours;
-elevated temperature and heart rate;
-extreme exhaustion;
-dizziness.
This lasted for a few days but slowly got better.
Oncologist is trying following to stop reaction:
-doubling time for Infusion (slower rate);
-premed of Tylenol, bendadryl, and pepcid to head off reaction;
-extra bag of saline once med infused;
-stay at chemolounge an extra hour to see if reaction starts.
We've done this once and things were improved but not perfect. Wanted folks to know about this since I was clueless and scared when it started happening.
0 -
Hey girls... checking in. altho I have been off Kadcyla for a while now, i still wanted to check in with you . Miriam... i hope you do well on Doxil, herceptin and perjeta . I am now on herceptin and perjeta only. I will check out doxil tho. as depending upon my next scan in mid june doc may want to add a chemo to my plan.
Denny123... I think of you so very often. How is Xeloda doing for you? I hope you are not having any SE's with it.
You girls all take care.
0 -
Hi DL3,
I have the sore feet and hands with Xeloda, and my onc lowered my dose to one week on and one week off, which should help. I am on a low dose of 2,000 a day.
I had a few days during my first cycle when my feet hurt so badly that I had to sit here with my feet on ice packs. The pains got better, but then the skin on the bottoms of my feet turned gray and brown, then started to peel off.
My big toenails turned black, so I had to polish them and am wearing sandals since shoes hurt my feet. I bought shoes and sandals with memory foam insoles and that helps.
My fingertips were peeling too, but that stopped. I have mild nausea.
But all in all, this is easier than Kadcyla and I sure don't miss the daily nose bleeds!
0 -
Gonegirl, thanks for sharing the information about your sudden reaction to Kadcyla. It does sound scary but good to know what signs to look out for. My clinic (and I) has become rather lax on the post-infusion waiting period but it seems there is actually good reason to adhere to it.
Denny, glad to hear that you are finding Xeloda to be easier than Kadcyla. I agree that the nasal issues are no fun but the sore feet don't sound so great either. It's always something though isn't it?! My latest issue is that I am experiencing increased neuropathy especially in my feet. My toes often feel quite crampy and tingly. I haven't really tried any treatment for this as I haven't heard of much that helps with neuropathy. I hope I'm not reaching the end of my Kadcyla run since it's been pretty good to me so far but these foot and hand aches are really annoying. Anyone else having this problem?
0 -
Margarita! Gabapentin (neurontin) works really well on that Kadcyla neuropathy. I'm able to say I used it all during Kadcyla (once I understood what I was experiencing) and it manages it. I have been on the highest dosage (3600 mg/day) and it does cause some forgetfulness. I hope to get off of it now that I'm no longer on Kadcyla.
I've moved to Doxil with Perjeta and Herceptin first. So, far, only a couple of times of mild nausea for which ginger pills worked. (Ginger Rescue, I think they're called). Also, some intestinal drama, but not too bad.
Denny, I never found Kadcyla to be such a messy experience as you did except for the neuropathy. Yes, some runny nose stuff, too. I don't like the sound of what's happening to your feet!
Will try to stay abreast of what's happening here while checking out the Doxil thread.
0 -
Margarita-I had neuropathy with Kadcyla but since I stopped it the end of Nov, it has gotten a bit better. I guess it would help though, since now my fingers and feet are sore from Xeloda.
But today is my last day for this cycle of pills, so I will get a week break, TG.
Miriam-keep checking back and I guess I should check out the Doxil thread since that will probably be my next chemo. Good luck!
0 -
Thanks for the tips on treating neuropathy. While I am loathe to add another drug to my routine, if the neuropathy gets worse I’d rather add a drug than have to move on from the Kadcyla. Keep on keeping on, ladies
0 -
Hi Peeps-just feeling a bit low this morning and figured you all would understand. I went on Thursday for my Kadcyla treatment & my onc. (who I have worked with for the past 8 years on this "up and down" rollercoaster of disease) & she informed me that she is taking at least a year off (and may be retiring) b/c she has decided to join the patient/physician advocacy group which helps protect the rights of patients and helps fight for the treatments that people really need. While I totally admire her efforts and fortitude to help on a more global scale-I have to be honest, I'm so bummed for me!! I don't want to be selfish & I hope you don't think poor of me but it sucks!
0
