Who's on Kadcyla/TDM1?
Comments
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Hi all, just wanted to check in and let you know that after 14 Kadcyla treatments, my recent PET shows still NED (yay!) It's the second clear PET since going on this drug. I'm really pleased by this result and grateful that I can stay on Kadcyla longer since I find the side effects to be pretty manageable. The only thing my PET showed was a new "nodule" on my thyroid. MO thinks it's not BC since it's quite an unlikely place for metastatic spread especially when previous lesions in liver and bones are not showing any activity. I do have a history of benign cysts on my thyroid but not in many years. I will be following up with an endocrinologist but just wondering if anyone else on Kadcyla has experienced this? Thanks and hope you are all doing well.
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margaritaML:
I haven't experience it.
Have a wonderful day everyone!!!
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anyone experiencing an itchy rash? Started in my legs (I thought it was from shaving), then belly, now my arms...nurse says is a common side effect of Kadcyla??? To take claritin/benadryl and apply lotion...duh, Ive been doing that and no help, so that's why I call them!
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Miriam, we had/have a Dr. Kiefer at the Arnold Palmer Pavilion. I will have to check to see if she transferred to UPMC.
Gramen-although I have been on Kadcyla for 5 years, I haven't had any rashes.
It has been 2 months since I fell and broke my right femur and left shoulder. Yesterday my doctor cleared me to drive again and to get PT out of my house.
Unfortunately, my nose bleeds have come back. The quit while I was confined to my bed at the care home for a month.
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Congratulations MargaritavilleMI !!!
Ladies... just checking in. have my #13 Kadcyla tomorrow. sometime the first week of july 1st will be CT scan. looking forward to going camping this upcoming weekend. I hope you are all doing very well. Hugs.
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Hugs Denny123... sounds like you are doing so much better. I am so sorry about the nose bleeds that they started back up. Hugs.
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Hello Ladies, just got results from my bone scan which shows "stable no progression." I have not had Kadcyla since December, 2016. This was after 10 treatments in 2016. I had very few SE's mainly fatigue. This med had been very successful for my extensive bone mets. I hope that everyone on this treatment has the success i have had. When I was told my cancer had returned, I felt my time was near. With the encouragement from my MO and RO, I plunged ahead and said to myself "I am fighting this." Every day i get to see my three great grandchildren is a joy!
Wand
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wleeky 1952.... Hello, Congratulations on stable! are you no longer on any treatment plan ?
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Hello DL3, I still see my MO every 6 weeks and have my bone scans every 2 months along with my port flushed. My MO uses the term "drug holiday". If progression occurs, I will go back on kadcyla. I also take Xegvia injections every 3 months. I am enjoying my holiday
Wanda
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WOW, wleeky1952,
I wish i can do the same, I really will like to take a break, I wonder what is the criteria the doctor take in order to give me some "drug holyday"
I really happy for You, enjoy it!!!
Have everyone a wonderful weeken
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Oh Denny, my nosebleed twin... I haven't been on in several months and stumbled back on today to catch up on the older posts. I'm so very sorry for all that you've been through recently!! I hope that you heal quickly and feel better emotionally now that you have a bit more freedom to get out of the house. I'm hoping you're feeling more comfortable and that your rehab is progressing well. Sending hugs!
gramen- I get an itchy rash on my neck and back most infusion cycles. I have seen a dermatologist, my MO, and my RO...and all attributed to the Kadcyla. The dermatologist said I can alternate a topical steroid cream when it gets worse and also gave me an Rx for a topical antibiotic at one point because she said I had developed folliculitis because of the irritation.
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gramen - I just saw your other post. I have been on Kadcyla without any breaks since March of 2013....so a little over 70 infusions, if my math serves me
. My PET scans have been clear for nearly the past 2 years. Generally this medication has allowed me a great quality of life. The night of the infusion I am a little light-headed, mildly achy, and chilled. The following day I feel a bit queasy and fatigued. I occasionally get a headache on the 4th or 5th day, and I frequently have a runny nose. I try not to schedule anything the day after the infusion, but otherwise haven't changed any activities. I have experienced some mildly elevated liver enzymes and low platelets. Otherwise, my primary complaint is my nosebleeds. They began about 6 months after starting Kadcyla, and I can get several in one week to then months without. The unpredictability of it is very stressful (and embarrassing), and although I'm very proactive about it (not blowing my nose, using saline gel, etc.), I still have to see the ENT once or twice a year for a cauterization. Hoping Kadcyla serves you well!!0 -
weekly1952 I had just spoke with my Onc about duration of Kadcyla. he said... I have 3 reasons we can go off kadcyla
1. it quit working
2. my heart cant do anymore kadcyla (my heart is doing great!)
3. i decide to go off on a vaca for couple months come back and say hey doc.... i want to contintue this holiday from kadcyla... so this would be a choice of mine.... he said I can do that... and we would scan regularly and if needed go back on kadcyla.
i am staying on kadcyla for now. i have pushed back infusions oh i think 3 times but only for a week or so.
CJRT.... so glad to read you too are doing so well on kadcyla... march 2013! i am sorry of the nose bleeds.
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hi ladies., been a bit since I posted. The Kadcyla quit working for me and the tumor markers kept going up. Pet scan showed some bone progression. I did have a stomach bleed and ended up in the hospital. Doing good now. But I lost so much blood. So please watch the asprin. I am now back on taxatere and the tumor markers really dropped. So will be changing groups. Thanks for the info and hope this drug keeps working great for you. Have a great holiday.
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Sending Hugs to you pasque.
I am sorry kadcyla isnt working.
I was told in the begining no asprin only tylenol ...as asprin will effect the liver.
you take care pasque.
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home from CT scan this morning. Have a good week everyone.
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Cyber hugs Pasque wishing you the best of luck with your new treatment plan. I will keep up with your progress and glad to hear your TM are dropping.
DL3 Keep us in the loop with scans results. Have a great weekend.
Wanda
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Hello everyone. I am sitting in infusion room getting my third dose of kadcyla. I asked my doctor if nosebleeds were a side effect and he said no. I see now upon reading here that it is in addition to the runny nose I now have. I have nausea for about 10 days after treatment thus far and I have fatigue, very little appetite. I tabernacle spasms in my side, stomach and legs. Was switched to this after taxon stopped working. Prior to that,had tried tamoxifen, herceptin and xeloda. Glad I found this thread.
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Pasque-You will be in my prayers as you progress on this crazy journey we are on. Happy to hear that the new treatment did bring some positive news. Wishing you all the best.
Nikkiwi-Wecome to the group! I can't speak for everyone but I've been on Kadcyla since the end of January and for the initial four months I felt very fatigued but now my body has adjusted and my overall fatigue is much more manageable (just feel that very fatigued feeling mostly the weekend following treatment). My last PET scan in June showed "NED" for the first time since 2015 so I'm very pleased with this drug! Hope you find it to be as effective.
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Pasque: i glad that your new taxotere is working , please keep us inform about how you feel, I going to keep you in my Prayers.
nikkiw1973: welcome to the group.
You will find very valuable info that you can not find anywere else. Some times even Doctors haven't hear about it. I more prepare and knowloge than before I found this group.
ALELUYA FOR THIS GROUP!!!
Wishing everyone a good weekend
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Hi everyone. Still healing slowly from my broken leg and shoulder.....three months ago yesterday. Finally able to get down to my family room and this computer.
Had my Kadcyla on Friday and asked when I last had my Boniva injection for my osteoporosis. Turned out it was over a year ago!!!! Don't know why they quit giving it to me, but now my onc says it doesn't work well.
So I have to get a bone scan and then go on Prolia. My bones broke too easily so now I am paranoid about falling again.
I have to read up on all of the above notes, but not everyone has the same side effects. My nose bleeds are a lot better since my activity level is much lower.
I do go to PT twice a week and do my exercises at home. I don't go out much since I am afraid of falling again, and have to use my cane.
Guess I will heal up sometime!!!!
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Hi ladies. I just thought I would give a brief update since it's been about 3 months since I posted.
Finished my 11 th dose of Kadcyla today. Had a PET scan last week and MO is very pleased with results. Last October, I had a PET scan which showed progression in the liver and bones (left hip). I finally started on Zometa in June after completion of dental work. There is no activity in hips or bones. Last week's PET scan showed only two tiny spots on the liver which continues to be an improvement from the previous PET/Scan.
My last Brain MRI was essentially clear. I had another one yesterday and I'm waiting to hear from RO for results.
AST is slightly elevated but remains between 60-70.
My MO is very pleased with today's results.
I'm keeping all of you in my thoughts and prayers and hoping that you all can achieve the positive results that I have on Kadcyla
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Pwilmarth, so glad to hear kadcyla is working well for you. I have also had success (so far) with this treatment with minimal SE's.
Wand
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Hi, everyone,
Hope everybody is doing well.
I have a question regarding brain tumours,
I been asking my Doctor to do MRI, and he told me that the only way is if I have sintoms .
( I do not understand why is not standar procedure to do MRI when you have a high risk )
Some people never experience any sintoms, I really don't know if there is any kind of risk to use to much MRI in the brain.
I don't know why they don't do MRI, like they do the Ecocardiogram .
Thanks.
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Hi, everyone,
Hope everybody is doing well.
I have a question regarding brain tumours,
I been asking my Doctor to do MRI, and he told me that the only way is if I have sintoms .
( I do not understand why is not standar procedure to do MRI when you have a high risk )
Some people never experience any sintoms, I really don't know if there is any kind of risk to use to much MRI in the brain.
I don't know why they don't do MRI, like they do the Ecocardiogram .
Thanks.
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The symptoms of brain metastasis are similar to the symptoms of a stroke or swelling of the brain. That means feeling tired, having high blood pressure, numbness or tingling in unusual places on your body, and difficulty concentrating. Headaches that do not respond to mild pain relievers are also symptoms. It can also present with difficulty walking and balance problems.
I had most of these within 3 weeks of spotting the micro-lesions on an PET/CT scan. So if you are getting regular scans, chances increase that the lesions will be caught before you have symptoms. And your MO will immediately refer you for an MRI. Senator John McCain, was just diagnosed with Brain Cancer, and it was found by CT scan. If you went to the ER complaining of these symptoms, they would order a CT scan. The MRI has more specific uses for treatment of brain metastasis.
Here are a few YouTube videos from UCLA and the University of North Carolina on Brain Metastasis which may help you discuss this with your MO:
Cancer Treatment for Brain Metastasis | #UCLAMDChat Webinar
Brain Metastasis - Dr Tim Zagar - 2014 MBCN Conference at UNC
Understanding Brain Metastases An Overview of Treatment Options and Care Guideline Good examples of symptoms
It's been 8 months since I was treated for brain metastasis and nearly every symptom is gone. One of the confounding factors once you are treated is deciding if your symptoms are a result of the cancer or a side effect of the therapy. I have been left with some hearing loss in the left ear and it's not certain if this will clear by my one year anniversary. It has shown improvement since last November. This symptom started after treatment began when my head felt like it was underwater.
So the answer to your question is to continue to communicate with your MO. Many doctors will send women for an MRI to ease the anxiety but I gather that you live in Canada or one of the countries that want to limit the expense of unnecessary MRIs.
If you are worried, be the squeaky wheel and keep bugging your MO about your concerns.
BTW radiation therapy for brain metastasis increases long-term survival two to four times longer. This has been known for 50 years. New uses of radiation therapy has improved this data.
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pwilmarth :
God bless you, thank for all this information,
God bless us....🙏
I keeping youall in my prayers
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Hi everyone! I'm new here... I was diagnosed Stage IV a year ago (stage 3a the year before that), and just started TDM1 a few months ago along with a low-methione diet. My tumors have shrunk significantly!!! I have 28 tumors in my liver, as well as lymph node involvement in my stomach, esophagus, and left aorta. The lymph nodes are barely detectable as of my last CT scan, which was 2 months ago. So after only 2 treatments of TDM1 and strict nutrition, I've shown significant improvement!!! I've since had 6 treatments, and can't wait for more good news soon!
I specifically joined this forum to talk about TDM1,and so I could comment on the constant nose drip! That has been my only SE. I actually think that's the Herceptin, as I did a year of Herceptin in 2015-2016, and had a constant runny nose the entire time during treatment. It stopped when I stopped the Herceptin, but kicked right back up again almost a year later when I started the TDM1. I mentioned it to my MO, and I said it's not listed as a side effect, but that I keep reading about it on TDM1 boards, so now he's going to ask al this TDM1 patients about it! Any hoo, a regular antihistamine was not cutting it for me, so he found me a nose spray fro Rhinorrhea unrelated to a cold, and it's a life changer! It's just a nose spray for constant nose drip unrelated to anything, basically. So I just hopped on here to tell you about it because having a constant runny nose is the worst! It's called Ipratropium Bromide Nasal Solution. It's by Bausch + Lomb. (I don't work for them, and have no affiliation with them whatsoever...I just want you to know you don't have to live with constant nose drip!!!!)
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Veggiegirl99-
Welcome to BCO! We're so glad to hear you've had success with TDM1 (nose drip notwithstanding!). We hope you continue to show improvement! And thanks for the suggestion for the nose drip, we're sure it can help someone here.
The Mods
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Thanks everyone. Just had fourth dose. I get Zometa every 3 months as well. Still experience nausea but appetite is back to normal. No nosebleed last time or this time thus far (knock on wood). Due to get first set of Ct scans next month since being on Kadcyla.
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