Who's on Kadcyla/TDM1?
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cbd
Actually I have a very bad pain in my left arm, I got radiation and haven't improve,
I really don't want to get more radiation and I am contemplating acupuncture,
I am going to try it, my doctor actually recommended.
I will try to see if can work for me...
Thanks!!!
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Hello ladies!
Do you all get labs prior to kadcyla? I assume we all do just to confirm we are good to go for infusion. I get my labs day before then have my Oncologist appt. every 3 weeks.
How often do you get ct scan?
How often do you get PET scan?
Kadcyla # 5 for me tomorrow!
I hope each of you are doing very well.
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Good Morning everyone!!!
Today i feeling very happy!!!!the first 10 days after katcyla has been hard, but today I feel better is good to know that i can Get better after Katcyla.
Today finally we have some Snow...is very Pretty day!!!
DL3: I really dont know if there is a standar of care regarding this tests.
For what i experience is that the Doctor will determine when is best to be done.
But some of the ladys here with more experience can tell you what do they think about it, I know that there is a minimum after you get Ct , if I no mistake is 3 every months??no sure
Anyway, I want to share my friend experience with . She was taking HP for 4 years and doctor was stretching her CT scan , every year, ( I guess doctor thought that she was Ned) but only in a year she got a big Tumor in the brain..... Now she is taking radiation....so I really don't know if was good idea to do it every year, I think is better to do frecuently to catch anything with time.
so should we tell the doctor to do it frecuently or just let them decide???
I actually request a MRI, I want to be sure nothing is growing, I getting paranoid .......
Sorry to share this event but I hope it help somehow...
Have a wonderful day , everyone!!!!!
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I get bloodwork right before my tx. We have an on-site pharmacist who checks it and also an onc has to sign for my tx. So that requires only one trip to the chemo center for me.
I have been getting PET scans for 5 years since I had my recurrence. And the PET is every 3 or 4 months-next one is this Friday.
If I ever see remission again, I will then have CT's, but they will still be every 3-4 months. They are seldom given more often since it takes usually 3 months for the chemos to take effect.
And insurance companies balk at more frequent scans.
I have asked about brain MRI's but my onc says brain tumors really aren't that prevalent and since I have none of the usual symptons, he doesn't want to order one.
I have been dealing with really bad lower left back spasms since April. I quit getting the Faslodex shots, since they might have been the cause. Accupuncture was suggested, but I have been doing okay with getting an injection of Lidocaine and Kennalog into that muscle every 5 weeks.
My worst nightmare with my nose bleeds came true------I caught a nasty cold and it has been really hard since I don't dare blow my nose. I do think I will survive, though.
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I also get my blood work done on-site just prior to every infusion. I generally see my onc (or her nurse practitioner) at the same time. I get CT/PET scans every 3-4th months. Am finding that I am feeling very fatigued for several days after my infusion which is annoying but a small price to pay for otherwise feeling pretty good. My neuropathy seems to be improving a bit which leads me to believe it was primarily caused by the Taxol treatments that I received prior to Kadcyla. Cheers!
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Good Morning everyone!!!
Today i feeling very happy!!!!the first 10 days after katcyla has been hard, but today I feel better is good to know that i can Get better after Katcyla.
Today finally we have some Snow...is very Pretty day!!!
DL3: I really dont know if there is a standar of care regarding this tests.
For what i experience is that the Doctor will determine when is best to be done.
But some of the ladys here with more experience can tell you what do they think about it, I know that there is a minimum after you get Ct , if I no mistake is 3 every months??no sure
Anyway, I want to share my friend experience with . She was taking HP for 4 years and doctor was stretching her CT scan , every year, ( I guess doctor thought that she was Ned) but only in a year she got a big Tumor in the brain..... Now she is taking radiation....so I really don't know if was good idea to do it every year, I think is better to do frecuently to catch anything with time.
so should we tell the doctor to do it frecuently or just let them decide???
I actually request a MRI, I want to be sure nothing is growing, I getting paranoid .......
Sorry to share this event but I hope it help somehow...
Have a wonderful day , everyone!!!!!
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DL3 and ESCORPION -
Genentech recommends monitoring the following lab tests before each dose of Kadcyla:
Liver Function Tests (AST/ALT)
Bilirubin
Platelet counts
If there is an increase in AST/ALT or bilirubin or decrease in platelet counts, then your MO may decrease the dose or hold Kadcyla until your labs recover to normal and then restart at a lower dose. If your lab results increase by 4 times, they will stop the treatment (or your platelet count drops to less then 25,000)
As far as PET scans go, the general recommendations are every 3 months for the first year and then every 6 months there after. I haven't actually seen any recommendations for yearly PET scans but that doesn't mean that a physician would not opt for yearly scans or more frequent scans based on your history. If there is a change in treatment your MO may increase the frequency (usually after two cycles of the new therapy) to determine if the new regimen is working. For some cancers, they are able to detect positive changes on day 14, and in clinical trials, the protocol may be to perform a scan on day 14 and day 59. My first PET scan was performed in FEB 2015 and the second was performed in APRIL 2015 - roughly 8 weeks after starting therapy. So there is room for a lot of leeway in determining when to perform a scan. Think of it this way - One Size Does Not Fit All
Denny123 - just watched a video by a radiation oncologist at the University of North Carolina who quoted a rate of 50% of women with HER2+ MBC will develop brain mets. Supporting data suggests that 55 - 65% of patients being treated with T-DM1 will develop brain metastasis. Apparently some women experience a disruption in the blood brain barrier which allows T-DM1 to cross the blood-brain barrier, allowing T-DM1 to treat brain mets.
Having just been treated for brain mets, I believe that all of us need to understand what the symptoms for brain mets are. My progression was caught on routine PET scan before I noticed symptoms. So without a PET scan or symptoms, a brain MRI isn't necessary. The Brain MRI is used for planning treatment (my radiation treatment was delivered by something called a TrueBeam machine, which uses computerized 3D mapping to precisely deliver radiation therapy to the cancer cells and to spare the healthy cells). Treatment took only 10 minutes under this machine.
The following is a good reference to the treatment of brain metastasis
After radiation therapy you are given your mask as a trophy for graduating to the next level
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pwilmarth :
Really appreciate your information, My friend who got the brain metastasis told me that she didn't have any sintoms ( when I ask her) I really don't know if she was telling me the truth .
I already ask my doctor to do a test , and he told me he can do MRI, I will ask again, I have done some MRI, CT, and bone scan I have never done a pet scan .....
Is better to catch it earlier ? Or really doesn't matter???(the brain metastasis)
How are you doing after the treatments?
Are they painfull?
After the treatment if works , it could came back???( brain metastasis
Thanks again for all the info
Have a great day everyone!!!!
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Denny123:
How is your nose bleeds doing?
Did you find a solution?
Do you have them always or occasionally ?
Thanks!!!
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ESCORPION
As far as symptoms go, I wasn't experiencing any symptoms that I recognized when the PET scan was performed, but things started escalating after the results of the PET scan came in. So it's possible that your friend didn't have symptoms and it's also possible that her symptoms were so subtle that she didn't recognize them. Remember that one of the symptoms of brain metastasis is memory problems and decline in cognitive function so she may not be a good historian.
As far as scans go, the medical oncologist uses three types of scans - bone scans, CT scans and PET scans. MRIs are used primarily by radiation oncologists to plan treatment - the mask you are given to wear is based on computerized 3D mapping from your brain MRI and to monitor your brain after treatment. You will be followed closely by the radiation oncologist every 3 months after treatment and you will have an MRI every three months afterwards. The radiation oncologist is checking for healing of your brain as well as monitoring for the return of any metastasis. Suffice it to say that you will become good friends with the radiation oncologist.
As far as the treatment being painful - it is not. You hop up on the table of the machine and the radiation therapist positions you on the table with the mask in place. The purpose of the mask is to prevent you from moving during treatment because the machine is programmed to deliver radiation to the cancer cells avoiding the healthy cells. Then the therapist delivers your treatment, removes the mask and you are done. It never took longer than 10 minutes and it never hurt. And you start feeling better very quickly after treatment, within 3 to 4 treatments.
Very often, a PET scan is performed with a CT scan, so it's not incorrect to think of a PET scan as also including a CT scan. The difference is the PET scan is detecting spots where cancer cells are utilizing glucose (or sugar) and the PET scan may miss a certain type of bone metastasis. It just so happens that breast cancer produces this type of bone metastasis, so your medical oncologist may prefer a bone scan over a PET scan or CT to detect this type of metastasis.
As far as is it better to catch these things sooner - I would say yes because of the issue of quality of life. If you wait for symptoms to start, you also have to wait for treatment to kill the cancer cells, and for your body to heal, which means more pain and discomfort for you. But the treatment will kill the cancer regardless. It's just a question of how long it takes for you to recover. If you aren't having symptoms, it will take less time to recover.
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Good Morning!!!
I got a good news today about my brca1 and brca2 , they are negative...
Hope one day I will find out how I got this sickness ....
Have everyone a happy holidays, and ours dreams came true, and for this new year coming ,health for all of us, and have a stable year!!!!
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hi I am new here. Had breast cancer in 2010 and spread to bones 2014. Been on HPT on and off since. It is now not working and will get first dose of Kadcyla on Friday. I was wondering if some one could tell me what to expect. I have been reading and it is a big help and doesn't sound as bad as I thought. But just wondering if it hits you fast or what. Thank you. Have a great Christmas season and God Bless everyone. Good luck.
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Hi pasque:
Welcome, I have been with HP since May 2015 until this November 2016.
I didn't have any side effects from the medication HP , the only things I experience was crack nails, and in the beginning a skin itch, nothing mayor, mayority of treatment was a brizy ... I didnt feel a thing .
November 2016 I have a progression( my first dx was bones, and continue one lesion in my scapula, in my bones )
Doctor recommend Katcyla, my first infucion , I feel the same pain I got with taxotere the Quimo drug but mild....no that strong, body ache ... Specially until the 10 days after I received, now I don't know if your doctor is going to give you something for the bones too... They usually give you three weeks after the first infucion because they want to see how you are going to tolerate Katcyla
I found very hard when they give me the two drugs togheter Katcyla and Zometa( bone medication) allot of pain ... But gets better after the 10 days.
So I suspect that you only are going to get Katcyla , Witch is good for you because of the holidays, ( first 10 days are the difficult ones) i do recommend to ask your doctor for pain killers like Tylenol 3 or with tykenol with codeine .
I do everything normal like before...I have a normal life like before...of course everyone is different.... But I think is very well tolerated .
The nurse will give you a panflet with all the info....and you also can look it at the Katcylawebsite...
Wishing you the best for this holidays!!!
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Had my PET scan on Friday and haven't seen the report yet. The head nurse did call me yesterday to go over it and I guess 7 of the nodes in my chest and neck are about the same. The Hilar node (at the entrance to my lungs) is a bit more worse.
I don't know how much higher the SUV score is, so I am anxious to read over the report. BUT, it turns out that I also have pneumonia! I had a bad cold a couple of weeks ago, which I always dreaded since I can't blow my nose. Then I started coughing up bloody mucous, which I figured was because I can't blow my nose.
I didn't go to my PCP since I knew that I couldn't get my PET scan if I was on antibiotics. I figured anything would show up on the PET, and it did.
So now I am on Cipro for 10 days which upsets my stomach.
So I will stay on Kadcyla for at least 3-4 months.
Escorpion-the nose bleeds come and go and are totally unpredictable. The best advice that I got on here was to put Afrin on a Q-Tip and swab the inside of my nostrils. That slows down the bleeding if it is just dripping. And YAY for a hegative BRCA!!!!
Pasque-welcome!!! Kadcyla really isn't too bad. I am a 15 year (as of tomorrow) survivor of Stage 4 BC, nad have been on chemo the whole time. So it is hitting me harder than most. My nose bleeds didn't start until after 2 years of Kadcyla.
Whoops-have to re-boot
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Back again-My desktop is refurbished and keeps freezing up.
Anywho, Pasque...a lot of ladies tolerate Kadcyla very well and it can be very effective. I did go into remission for a few months, but my onc kept me off Kadcyla for 9 months, which was a mistake.
So my original 3 nodes multiplied to 8.
If you have much nausea, I found that Emend plus Aloxi is best for that. But it is never severe nausea.
Please keep us posted as to how you are doing and good luck!
Denise
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Hi ladies, looks like I'm going to have Kadcyla next since I failed Herceptin Perjeta Navelbine after only 8 months !!! Arggggh
I posted this question before, but wondering again, has any of you had Navelbine before Kadcyla? I ask because a comment from a Dr during a panel saying she isn't seeing responses to kadcyla after navelbine....here's the link (end of the page):
Christy A. Russell, MD: The other thing I've noticed is if I've used trastuzumab and Navelbine, I'm not getting responses to TDM-1 and I wonder if it's the same vinca alkaloid kind of chemotherapy interaction that they're just not as responsive - See more at: http://www.onclive.com/peer-exchange/advanced-breast-cancer-update/first-line-treatment-of-her2-positive-metastatic-breast-cancer#sthash.jl7XnXm4.dpuf
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Denny123;
I hope your pneumonia clears up!!!
Thanks again for all this valuable info,
Gramen:
I really don't have any experience with Nabelvibe.
Hopes some one give us some info
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Thank you ladies for your encouragement. I have learned a lot from the short couple days since I found this. I went to the cancer center to discuss the pet scan and it wasn't terrible. So far no organs or brain with anything. More damage in my back. But the taxotere was not working. I had a appointment for Friday for the Kadcyla, but some one canceled so I got it today. So I will talk to you in a few days and let you know how I feel. Thank you for your help. Have a good Christmas.
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pasque:
Cheers for the good news...hope Katcyla are very torable for you!!!
And for everyone's have a happy holidays !!!
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Hi, It has been 5 days since my treatment with Kadcyla. No real side effects yet. Stomach has been ok. Do have some pain but had some before. Will get another treatment Jan. 4. So not much to say. Will get back after Christmas. Have a good day.
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Pasque:
I really glad that you are doing well .
Hope we all stay long time with Katcyla..
Have happy Christmas ..
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gramen
I started herceptin, perjeta, and navelbine in July. My tumor markers steadily rose through treatment. The end of October my mo switched me to Kadcycla. I too saw that video and was quite worried. However, after my second infusion, my tumor markers finally dropped. It was great to get some good news before the holidays. I'll get my next scans the first of the year, so I'm hoping all will be good.
I hope you have a good response from Kadcycla.
Merry Christmas/ Happy Holidays to All
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grannyof3,
Is great to hear your tumor markers are dropping!
I'm at the cancer center waiting for labs then will have my first Kadcyla infusion. I have my mom visiting over the holidays so is nice to have someone with me.
Wishing all happy holidays too!
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Grannyof3:
I glad about your Tumor markers dropping....
Enjoy the holydays with you mom... And family....
Hope this new year will bring to all of us
Only good news!!!!
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Hi, As I said I had the first treatment on the 14th. No big surprises. Some pain but had that before. No stomach upset. I knew it said that leg swelling could be a SE so put the compression socks on. But I decided to take the compression socks off the 22nd. Legs started to swell some on the 24th so had to go back to them. Still a bit swollen but not bad. Is this a problem with anyone else. I have had very little swelling over the years. So hope this is a minor thing. I do have a dry nose but have had that with the THP. I get another treatment Jan. 4. Hope it goes like this one. Hope everyone had a good Christmas. Thanks for being here..
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Hi Denny123... checking in to see how you are feeling.
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Hi Pasque! No leg swelling for me. I do have a little bit of dry mouth. Did purchase some Biotene to help that. I had a runny nose since started kadcyla however noticed it has stopped. Getting Kadcyla #6 this week.
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Hi ladies, I look thru some older posts.. few pages back.. I am wondering how many of you ladies are still on kadcyla ? It just seems like from the posts there arent very many ladies here on Kadcyla?
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DL3- I am doing better! Still have some coughing when I talk a lot, but it is a dry cough and not the congested lung coughing that I did have.
I will have a CAT scan next week to check my lungs.
Pasque- my ankles are a bit swollen. But I was dx'd with moderately high BP at about the same time that I started Kadcyla. So it is unknown what is causing the swelling. Now that I think of it, it could be the Kadcyla.
Dec 14 was the start of my 15 year of survivorship of Stage 4 BC! Guess I should post that in the Stage 4 thread.
My nose bleeds are sporadic, and now that I forget who gave me the wonderful suggestion of swabbing my nasal passages with Afrin....thanks again!!!!
I have been telling my onc and chemo nurses and they are spreading the word.
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I will be on Kadcyla a year in January, 2017. My bone mets have not progressed since beginning this treatment. My SE have been dry mouth & eyes, nasal dripping, some fatigue. I was also getting Xgeva injections along with my treatment but now getting every 3 months. I noticed less joint and body aches when I do not have the Xgeva. I have been on this site since my initial dx. I rarely post but have learned a lot from the women going thru the same things I am. Once I found this site I never felt alone again. I loved the family pictures, including pets, laughed at the jokes, and cried when one of us crossed over. I am so proud of each and everyone of you
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