Who's on Kadcyla/TDM1?
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Macy- I sure hope for the best for you. It is so good that the Dr.s can find out early what works or doesn't. Sounds as if you have very good care.
Hang in there
Allison
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Thank you ladies for your support! I am moving on to Xeloda and Tykerb. If anyone has experience with that protocol that they would like to share, please PM me!
My onc does try to stay on top of things. Fortunately, my TMs seem to be very accurate for me. It makes it easy for my onc to determine what is likely going on inside. I'm just scared because Xeloda will be my 4th tx since this all started earlier this year. Gosh, will nothing work?
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Thank you for your advice! The side effects have gotten easier to deal with. Only the first cycle was real difficult. Motrin helps with the swollen/full feeling and headaches. Probiotic helps with constipation - I was on it with other treatments, too.
Best news of all, scans confirmed what tumor markers showed, treatment shrunk the lesions in my liver by 1/3-1/2 their sizes! Yahoo!
Had a treatment Monday, walked 3 times this week and didn't miss any days of work!
Thank you,
Julie
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Yay Julie!!! Hope it continues!
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Hello, ladies. Had my first TX of Kadcyla on 1/18 and now another one is anticipated for tomorrow, 2/8/16. Had been on THP since October, having added back in the Taxotere to my Herceptin & Perjeta which I had been on since doing THP for a 6-month stint July 2014 to January 2015. After 4 TX's this past fall, it was determined to no longer be working. I had been on Taxanes since my DX in November 2010 (Stage IV) along with Herceptin. Then hormonals for a couple of years until they no longer worked.
No serious SE's after the 1st treatment, but do now have a persistent UTI (on a 2nd antibiotic & still having a bit of an issue). I'd never in my life had one before. I also have dry mouth. Searching on the Internet, I found that 9% of women can develop UTI's, so I will have to drink a LOT of water. I usually aim for 64 ounces, but had been a bit negligent right before this developed.
Does anyone here know of UTI's being a side effect? WebMD cites that here: http://www.webmd.com/drugs/2/drug-163563/kadcyla-intravenous/details/list-sideeffects
I'm reading this thread very carefully and am grateful to so many of you for listing your SE's, the things you are doing to keep up a good fight, and how it's been working. Thanks so much. Thanks also to whoever posted the chemocare.com article for Kadcyla; there were a few helpful tips on there that will be good to know.
Miriam
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Hi and sorry that you are having problems... UTI's are new to me, but I try to eat yogurt daily. Wonder if that will help you, and also drinking 100% cranberrry juice.
It seems that I have side effects that no one else has, but I have been on chemo for 14 years, so my poor body is going through a lot.
I also have the dry mouth and use Biotene rinse that seems to help.
Please keep up posted.
Denise
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Is anyone having problems sleeping????
I haven't slept well for weeks. Melatonin worked well for a few months, but stopped. My chemo nurse suggested Benadryl, which worked one day.
I have UPMC health ins and they cover Ativa, Ambien, and Sonata....but all of those scare me.
I tried Sominex, tart cherries (natural Melatonin), Sleepytime tea, nothing works.
I am dragging all day, but can seldom nap.
Denise
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Denise , i have been having troubles sleeping for a long time. I take ambian and have been taking it for a longtime. Sometimes i add half a 0.50 xanax. It is not bad at least i get to sleep for few hours.
I am sorry you having insomnia it is very crippling i hope you get the right meds so you can get some sleep. Keep me posted. ((HUGS)).
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I was on Kadcyla from Sept 2014 to June 2015 as part of a clinical trial for non-MBC, so I still sometimes check this thread to see how people are doing on it.
Unfortunately I did recently end up with mets to the brain, but I'm still a big fan of Kadcyla. For one, scans show me NED below da head and for two, Kadcycla has limited potential to cross the blood brain barrier, so my neuro believes that it may have slowed the brain progression. I didn't get to dance with NED for long but I'm grateful for the short time I did have.
I thought I'd also repost my side effects in case it helps someone else.
"My second and third infusions were difficult and I experienced nausea, vomiting, general crappy feeling. My AST and ALT climbed steadily for several cycles and I got scary right side discomfort. The liver pain has disappeared and my liver numbers fell back into normal range. So in my case, my body just needed some time to get used to the medicine."
"fujimama, my first three or so infusions were rough...nausea, vomiting, body aches, the whole deal...and then that got better. The next few saw my liver numbers really rise, along with liver pain. I worried I couldn't finish the trial. Then, around infusion six, the liver numbers dropped and now I don't feel anything except a little extra tired the day after an infusion. So your body can get used to it!"
I definitely did have a real increase in energy after finishing the trial, but overall, Kadcyla was good to me.
I wish you all the best. And Denise - you are my Stage IV inspiration!
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Denise, thank you for your posts.
I have trouble sleeping and have for a number of years. Naps don't come easily to me, either. I can drift off if in a recliner & the TV is on. All that works is severely limiting caffeine, taking melatonin, and getting a lot of daily exercise. Oddly, if I stop walking for a week (a lot of snow here recently gave me the excuse to take a week off, very bad), the first walk increases my metabolism the first night and I don't sleep well that night. Then, my metabolism adjusts and things settle down. But lack of regular exercise is hard on my sleeping. Caffeine probably is worse than that, though, for me.
If I become desperate, I'll take a 5 mg Zolpidem (Ambien) which gives me about 2.5 hours of sleep. But I try not to take Ambien; instead, I'll try Kirkland's sleep aid, which is a decongetant.
I'm just happy to be off of Decadron (steroid) before treatment. That was really tough on my sleep.
Am going to see my PA (assists my MO) in just a bit so will report back what they think happened after just 1 cycle. Perhaps that is too early to tell. My palpation exams don't seem objective enough to me to know if my 1x1" tumor in my left breast has shrunk or not.
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Thanks ladies,
I was considering not getting the Decadron, so that might be an option. Once again, I got less than 4 hours of sleep last night.
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Hello MiriamWillits I did have one UTI - it was a stubborn one and needed 2 antibiotics, and think I can specifically point to it being due to dehydration due to the need to fast before an upper endo. Fight back with lots of water, and as Denny said cranberry juice, and also just staying scrupulously clean is important (more than usual, even). I only had one UTI, having taken those measures. I hope this helps and hope you will recover quickly and surely.
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Miriam - I also had a UTI on the first cycle, now almost through the second cycle and all is well. E. coli infection. I have not seen anywhere that this is a side effect in the official information, but there are a lot of comments on various discussion boards. No idea really why this happened, I haven't had one of these since I was in college! In general, few side effects and blood work was pretty normal after the first round. It is not as tolerable as Herceptin, but not bad at all for me. Good luck!
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Thanks, ladies.
The PA looked up some of the less common SE's for Kadcyla today and he agreed that UTI's can be a SE, after finding it in the literature.
Denny, I was thrilled when my MO told me no more Decadron. I seem to be rather extra sensitive to it, so she had (for my last THP infusion in December) allowed a reduction on the premeds and postmeds. I had no problems lowering it. There IS that negotiation you can do with some of the MO's (my first one at Fox Chase was not working with me on that, even after the Infusion staff had told me that, since I had been on Taxol for a half a year or so, that I probably was more tolerant of it by that time than we thought - I finally had to be very pushy, even somewhat impolite with her and she is a highly reputable Doc, now at Cleveland Clinic...now that I think about it, I can't believe I fought that hard because I'm not usually like that, but that stuff was making me nuts).
The protocols the MO's follow should be tailored to each patient, but that doesn't happen unless you argue for it, I've found.
I know those steroids are a blessing, though, so it's difficult to know when you don't really need them. The first infusion I had with Taxotere (July 2014) was without the premeds and boy, did I suffer. They can be very helpful.
The PA today thinks I may have had a slight decrease in the tumor size, and certainly no progression. Had another hit of it today, much faster. Tired, but excited and hopeful!
Blessings to all of you girls on this crazy journey.
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Miriam, another thought would be to take only showers. I used to get infections way back before my BC, and my gynie told me that sitting in bath water was not good.
I finally had a good night's sleep last night!!!! Only took one 3mg Melatonin. But after weeks of very little sleep, my body decided to do me a favor I guess.
Very good suggestion to forego the Decadron. I will not get it next week and see what happens.
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I have been on Kadcyla since December 2014 and except for once in January 2016, I have never had to miss a treatment. This drug has been great for me, out of 8 tumors I have only one left and it is shrinking each time they check. I have had few and mild side effects: dry mouth for sure, some headaches (I need to drink more) , feeling full and bloated, some neuropathie, low platelets...but I have been able to work every day, see kids and grand kids, walk my dog 4 to 6 miles per day.
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Thanks, Denise;
I had to laugh at your use of the word "gynie", which my daughter just taught me. I always say "OBGYN" and she probably actually said "Obegynie" & told me "everyone says it like that". So, I'm the archaic one. My daughter is 24-1/2 (a wordsmith - actually, we generally enjoy grammar, doesn't like going to the "Obegynie", but who does?).
Funny, I never take baths, dislike hot tubs; I'm just in too big a hurry. I don't even like taking too long in the shower, but I do wash overly thoroughly (OCD?). So, good to know that I'm doing the right thing in staying out of the tub. I'm drinking a virtual TON (exaggerating, I suppose) of water. I keep three of these Contigo water bottles full and I usually get through most of it (81 ounces) and that should help. My sister, who is a Weight Watchers counselor, rightly told me that the more water you drink, the better your bladder accomodates and holds more longer. That, in itself, sounds like a good thing.
I'm so glad you got a bit of sleep. The lack of sleep is so awful hard on a person; I remember the days of young kids and wonder how I made it out of that stage alive. Lack of sleep made (makes) me a bit self destructive, eating junk more, not wanting to take a walk. I really can't get by without 7 or 8 hours, and on these chemos, you're so dang tired that you want more like 9 hours. And then you still feel tired, LOL!!
Thanks, Marl. I'm very encouraged by you girls. I am excited to see what happens, and about ready to say "it's working"?
Thanks again!
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Ladies,
Has anyone had EYE and or VISION problems while on Kadcyla?!? Overall my treatment is going very well! Side effects getting easier to manage and have good energy. Also, it is working as confirmed with scan results!! That is the best news of all! But, I started having extremely dry eye and poor vision. I wear glasses already. I have been to the optometrist and opthalmologist 5 times since Dec. and each time they check my eyes the prescription needed is different! Once, it was drastically different, the other times not as drastic differences….but enough to affect reading, driving, etc. It is not realistic to get 5 different pairs of glasses, obviously! Some days, my eyes are so dry, it feels like there is sand in them….when there is nothing. I am already using lubricating drops, warm compresses at night, systane gel at night and have just started a steroid drop 2x/day. Considering Restasis, which my onc says is ok with Kadcyla. Eye doctor suggested doing Autologous Serum Drops, which most insurance does not cover.
Just curious if anyone else has had these symptoms…
Marl5900-I also get that full and bloated feeling, just FYI
Thanks, Julie
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jnh-I hav been on Kadcyla for about a year and a half. Was on it for 10 months, went into remission. Took a 9 month break and now back on since the nodes in my chest and neck have recurred.
I have been on Restasis well before starting Kadcyla so it is okay to use them together. I have a very watery right eye...the left is a lot less watery....weird.
I am 66 and have worn glasses since I was 12 because I am near-sighted. My vision has actually gotten better for distance.
I have a thorough check-up every 6 months. But I have never had a drastic change.
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Miriam-good luck and keep us posted!
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Julie - I experienced eye issues similar to yours during my year on kadcyla. Never left home without the eye drops. My vision changed several times. Maggie
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Julie: I have also had the same problems with my eyes. Also dry mouth. I am on my 3rd treatment and seem to be tolerating well. I failed my first treatment of THP, had progression. Hopefully kadcyla will do the trick. I have my bone scan scheduled for 2/29/16, fingers are crossed it works along with a lot of prayers🙏
Wanda
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Denny, Maggie, and Wanda,
Thank you so much for your replies! It helps to know others have had the same symptoms. Wanda, I will add to the prayers going up for Kadcyla to help you get into remission! Please keep us posted.
Julie
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Good luck everyone! I use Biotene before bed for my dry mouth.
I was approved for Valerian root for insomnia, but lately, Melatonin 3mg has been working again.
My nurse also sent in a script for Ativan for when the above fail. She said not to omit Decadron with my chemo this Wed.
So will see...
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Hi Denny, Glad that the Melatonin is working. Since my pituitary surgery and the follow up use of endocrine supplements it is definitely a very regulated pattern of meds......not to be casually taken. I really like the old days much better.. Btw. Had my first episode of profuse nosebleed after my last Kadcyla tx. My NT doc reminded me to have Afrin spray on hand after applying pressure to lower nose to get those pesky capillaries to stop....it worked. How have your Kadcyla txs been? I have scans this week...will post. any results..cross fingers. Enjoy a great week.....do you get into upmc for txs? Pegg
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Hi Pegg,
I go to Arnold Palmer Pavilion in Greensburg. Had more nausea this time than before. TG, so far I haven't had the 3 hours of sleep a night anymore. And now I take a one-hour nap daily and it really helps. I never in my life took a nap, but really need it now.
Just got approval to take Emetrol for nausea-an OTC pill that my friend takes.
I can barely touch the left side of my nose and will see my ENT dr on March 7. So he can cauterize it if he wants. I want to be able to wash my face normally without being afraid to scrub too hard.
I also use a triple antibiotic ointment on a Q tip and apply that several times a day to keep the area moist on both sides. That helps too.
Best of luck with your scans! My scans won't be until May.
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I had my bone scan on Friday afternoon. MO contacted me First thing yesterday morning telling me the scan showed no progression with a few ares showing some healing. Kadcyla seems to be working. I am very relieved as my first treatment did not work. I have minimal SE with this med, mostly fatigue and a little nausea, dry mouth. Nothing I can't handle. This is my 4th treatment. My TM's are below normal. Happy day😀
Hugs to everyone. This site has helped me tremendously since my initial diagnosis and my move to stage 4.
Wanda
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YAYAYAY! Wanda!
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Denny, Oh yuck regarding those pesky nosebleeds. I saw my NT last week and he reminded me to use Afrin spray after pinch pressure on my nostrils. Works great but takes patience...you are right and perhaps it is time to go with some cautery......too much irritation. All due to excessive mouth/nose dryness. It does help to rinse with salt/bicarbonate after eating...and then bio teen. Are we almost done yet? I had forgotten those tips from 11 yrs ago for mouthcare
. Tomorrow is number 4 for me....will be glad to get back to Herceptin and Faslodex. In the future. Will skip Magee and tx up here...lucky to be able to do that. Let me know how the cautery worked for you. Very best my friend.Peg
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Denny, Oh yuck regarding those pesky nosebleeds. I saw my NT last week and he reminded me to use Afrin spray after pinch pressure on my nostrils. Works great but takes patience...you are right and perhaps it is time to go with some cautery......too much irritation. All due to excessive mouth/nose dryness. It does help to rinse with salt/bicarbonate after eating...and then bio teen. Are we almost done yet? I had forgotten those tips from 11 yrs ago for mouthcare
. Tomorrow is number 4 for me....will be glad to get back to Herceptin and Faslodex. In the future. Will skip Magee and tx up here...lucky to be able to do that. Let me know how the cautery worked for you. Very best my friend.Peg
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