Who's on Kadcyla/TDM1?
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Welcome Escorpion! I hope that you have great success on Kadcyla!
DL3-get Biotene for your dry mouth. I use it every night before bed and a lot right after my treatment. You just rinse with it like a mouthwash.
It is important to combat the dryness to avoid cavities. And my dentist told me to get Act flouride rinse too, to protect my teeth.
Pwilmarth-not sure if I mentioned this before, but there ar several of us ladies on Kadcyla at my chemo center. And the one lady who had brain mets had noticeable improvement!
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Denny 123 - I'm very optimistic about the drug. I think I was one of the first women at my infusion center to be treated with Taxotere, H&P, so I may be one of the first to graduate to Kadcyla. But the reports on the drug are very good.
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Thank you Denny123 ... I add the Biotene mouthwash to my grocery list !! Appreciate the tip!
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Thanks Danny123
I have a question.
I notice allot of women are with herceptin for years, are this womens only Estrogeno/ prog - and her2+?
Danny123 i notice that you are triple positive....and stay with herceptin for years.
I was with herceptin perjeta plus tamoxifen for a year, I really don't know why I got a progresion , I wonder if was the tamoxifen
Are those women's with herceptin getting progression meanwhile with herceptin and continuing the Tretment ?
And
Can I get herceptin or any of the medication I been with in the past and progress, again? Can the doctor use them again?
Thanks have a great day!!!
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Some women do well on just Herceptin for years and then they have progression. Which means that the cancer has become resistant to Herceptin alone.
About 3 years ago, they finished a study called the Cleopatra study which showed that women with de novo (never treated) metastatic breast cancer did well on a protocol using Taxotere Herceptin and Perjeta. They lived longer and had longer progression free survival than women who were treated only with Herceptin
At about the same time they were doing studies with T-DM1 which also showed good results but wasn't better than Herceptin and Perjeta for first line treatment. So the standard of care became THP for firstline treatment and T-DM1 for women who progress on THP.
What you will see is a mixture of women on T-DM1 because THP wasn't the standard when they were diagnosed with MBC and they have been treated with other treatment protocols. Plus they are still investigating ways to use T-DM1 with other drugs for HER2+ cancer that has shown resistance to current treatment protocols.
I often refer women to the following link about HER2+ disease. The one thing I take away from this video is how upbeat and positive the oncologists are about treating this type of breast cancer.
As far as the question about can you go back on a drug that was used in the past - that's a complicated topic as you can tell by the way the oncologists discuss it in the video. Clearly they are using Herceptin in T-DM1 to deliver the chemotherapy drug to cancer cells, but they are using it only as a mechanism to deliver chemotherapy to the cancer cell and not for its therapeutic benefit for the Herceptin. My understanding is that the T-DM1 has more Herceptin in it.
As far as your question about ER/PR status - it doesn't matter in terms of being treated with Herceptin and Perjeta. They treat everyone with a targeted therapy for HER2+ breast cancer. It's just that the oncologists also have to consider the ER/PR status in their treatment plans. You will often here them talk about the Luminal status of women with breast cancer. I think the more difficult cancers are triple negative and Luminal B. Luminal A is easiest followed by purely HER2+ breast cancer.
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This ^^^^
also, Herceptin is a mono-clonal antibody that attacks the protien on the outside of the cancer cells. Thus it is easier on the patient than the regular chemos.
Kadcyla is a super-Herceptin. When I was in remission for a few months from Kadcyla, I went on to Herceptin alone for 9 months.
My recurrence came back and much worse, so now at this point Herceptin alone will no longer work for me.
Denise
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pwilmarth:
Thank you for the info.
My first diagnostic was metastatic in bones.
So actually when I got my first diagnostic I was really chock ...I have the believe that breast cancer will start in the Brest and it will give you chance to detected earlier and be cure, mine move from the breast to the Lymb node without notice, actually my doctors had hard time to find the source or where the BC start in my breast.
Anyway, I got, THP as first line of treatment plus tamoxifen but only it last for a year, and now I am in Katcyla , so far The first dose I have only body ache .... The second is going to be next Tuesday I hope it will be easy as times goes...
I also scheduled for the BRCA test this week...
Denny123: hope katcyla will bring you remission for long time....And for all of us..
Wishing you guys all the best!!!
And thank for the support, is good to know that we can find kindness in hard times...
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escorpion- I hope that kadcyla is very effective and manageable for you. Pwilmarth and Denny already provided great information, so I will just add my personal experience. Because I was triple positive and was diagnosed with metastasis while on tamoxifen after having been early stage, I was put on kadcyla and was told I needed to shut down my ovaries. So I had zoladex shots for ovarian suppression until I had my oopherectomy. Because I was relatively young and my cancer was aggressive, we made the decision to target both the estrogen and HER2. I've be been kadcyla for 3 years and 9 months and have found it very manageable thus far. At this point, despite a stretch of NED, I will remain on active treatment indefinitely
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CJRT:
I glad to Know that you are already more than 3 years with this treatment .
I also remove my ovaries earlier this year, and I didn't have any menopause symptoms , because I was with tamoxifen , but now that I not taking any hormone therapy , I start having hot flushes.... And also shivers at night..plus some join pains, but manageable ....I not taking anything for pain.
I am pr+est 75% and Her2, 100%( whitch i dont undestand the 75 of The pr+ est+?
I am also did a molecular profyling about The genes in my Cancer cells and i have this :
PIK3CA and TP53, hope one day will help me somehow...
Have a lovely evening everyone!!
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hi I was wondering if those of you who have been on kadcyla for a long time can help, I started this treatment in June 2016 after failing on HP which brought me to stable. My ca153 is now back to normal levels thank G-d but after the last few infusions I get bad headaches which last a few days and leave me feeling weak. Also my eyes have become blurry and when I saw the eye doctor he said my eyes were very dry. With all the creams and drops I find myself struggling to see clearly.
My doctor does not want to reduce the dose nor space them out yet, so I wondered if any one had similar experiences and kadcyla still worked for a long time even at a reduced dose or more spaced apart.
Thank you and be well all
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Thanks escorpion! Hoping for remission for all of us!
cbd-I have other side effects-no headaches or eye blurriness. My eyes are very dry and I used Restasis for them. But they water tons on some days. And that is a sign of dry eyes.
Weird how so many of us have different side effects!
I had major nose bleeds Thursday night through Friday afternoon. I sure didn't enjoy those. Used the Cotton ball soaked with Afrin treatment which did stop the bleeding for a few hours.
Then it would start again.
I will get Kadcyla again tomorrow and see my onc. I will beg him for a PET scan ASAP since I hate to wait for too long between the scans.
I have been on Kadcyla for 2 years and 9 months. Fun times.
Love to all,
Denise
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hi cbd, I can't address your question about lower dose or reduced frequency but I wanted to mention that I also sometimes get headaches. When I do get headaches, I tend to wake up with them. I found that mine are sinus related as my sinuses get very dry at night, so if I use a humidifier, it helps quite a bit. Since I started using a humidifier, my headaches are far fewer and less intense, so when I do get them an Advil tends to do the trick. The irony is that during the day, my nose frequently runs/drips. I don't know if you live in a dry air area but it seems that Kadcyla does cause dryness (eyes too) so perhaps a humidifier would help you too. Hope you can find a solution.
M.
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Good day!!! Everyone.
cbd: I wonder if your head ache and pains are increasing with every treatment? Did you get this side effects with the first infucion? Or is the interaction with others drugs!!!
I notice that when I was with HP tamoxifen and took some vitamins , I was getting a very bad itch... So I stop the vitamins and the itch was gone.....
Also I guess we are all taking diferents medications , I am currently taking Katcyla and Zometa( bomb) last thusday i took them togheter and Sunday at night I was with terrible pains , very bad, I got very depress because of the pain, but today I feel better.....
So I wonder if I will get the same side effect as yours
Have a lovely day everyone!!!
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Escorpian my eyes starting to become unclear after about 5- 6 weeks after I started kadcyla so maybe 3 infusions, i went to the opticians etc and then suddenly it cleared and all was fine for about 10 days then it went bad again and i tried another optician who said my cornea was very dry and recommended i see someone in the eye hospital here in London, Since it seemed so bad my husband took me to their emergency room and they said it was extremely dry eyes and gave lubricants and drops, it took about 2 to 3 weeks and i was fine for about 6 weeks, suddenly now again for the last 2 weeks its been really bad I have read that kadcyla can cause dry eyes but nothing i've tried seems to give me relief and i feel unfocused when i go around either not seeing clearly or seeing blurred.
As for the headaches i've probably had them on and off since i'v started but the last 3 treatments were bad so much so that last week's started before the treatment and painkillers helped a little but when i came home from the infusion and the next day all i wanted to was stay in bed - i felt like after my first dose of docetaxol totally knocked out.
I am not on another other medication from the dr but am taking supplements and homeopathic prescribed by practitioners and have been doing acupuncture the lasdt few months to help the various side effects i was getting.
Has anyone had their dose lowered or the frequency altered and had improvement in their side effects?
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Today I'm at my infusion center receiving my first infusion of Kadcyla. The nurse did her due diligence and educated me to the side effects of the drug.
Headaches are listed as occurring in 10 -29% of patients receiving Kadcyla. So it's a common side effect. I would just caution you to let your MO know because headaches can be symptoms of other things
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Today I'm at my infusion center receiving my first infusion of Kadcyla. The nurse did her due diligence and educated me to the side effects of the drug.
Headaches are listed as ocuring in 10 -29% of patients receiving Kadcyla. So it's a common side effect. I would just caution you to let your MO know because headaches can be symptoms of other things
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This link is from breastcancer.org: Headaches
There isn't a lot of information about reducing the dose for Kadcyla for persistent headaches. This is something that you would want to discuss with your MO because the goal is always quality of life with treatment for MBC and if headaches are causing you to have a decreased quality of life, it should be managed. But headaches are the cardinal sign for a number of diseases including stroke and migraines as well as swelling of the brain - which can be caused by a number of things either related or unrelated to your cancer. As someone who just underwent radiation therapy for brain metastasis, I heard enough about headaches either caused by swelling of the brain or radionecrosis.
Which brings me to the second point - something called palliative care. Once you and your oncologist have ruled out other causes for the headache, you should consider palliative care - which means symptom management. Symptom management covers a broad range of symptoms, but improving the quality of your life by managing your headaches is something a palliative care team can help you with.
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Thanks for all the info ladys !!!
This is all good information ....
Pwilmarth, hope that you can find a good solución.
Regards!!
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Pwilmarth :
Did you try what margaritaML said, about to use a humidifier ....I use every winter here because the air is very dry and cold I work wonders!!!
Wishing you guys the best!!
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Escorpion
Thanks for the concern, but I was responding to cbd's concern regarding her headaches, which I didn't make clear. Fortunately I haven't had any problems with headaches, but I also take Tylenol, Vicodin, and Advil as well as Gabapentin for peripheral neuropathy and it would take a massive headache before I would notice it.
I tolerated the Kadcyla treatment yesterday without any problems, but I never had problems with Herceptin before, so I don't expect anything negative.
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I have some questions; if someone can give me some info,
Those who has metastatic in liver, lungs and brain:
Is there is some kind of simtoms or pains something that I have to watch for? I will like to be able to identify some simtoms when happen so I don't wait too long to react.I currenly have in the bones triple positive.
I really predicate your input...
Thanks.
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Hi Escorpion,
I have been a Reach to Recovery volunteer for the ACS for 14 years, so ths is what I have learned from my patients and also my friends.
For the liver-In 2004 I had numerous mets to my liver from my BC. I had no pain at all.
Lungs- Seldom pain in the beginning, only a cough that will get progressively worse through the years.
Brain-Severe headaches, but those can usually be ruled out as migraines. Slurring of speech, inability to vocalize properly.
Brain MRI's are seldom given unless there is a definite possibility of mets.
Liver and lung mets will be detected through your usual CT scans.
Denise
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Escorpion:
Well, I haven't had lung mets but I can speak to bone, brain and liver.
I'll start with lung mets:
- Breathlessness
- Cough
- Pain
- Pleural effusion - this will present as breathlessness
- Loss of appetite or weight loss
When I was first diagnosed with metastatic breast cancer, I had just had surgery. My first PET scan was about a month later after the surgeon had cleared me for treatment by the medical oncologist. The PET scan showed a small liver mets and a small spot to the rib. I don't really consider that mets but a progression of the primary tumor into the rib as the surgeon told me he had taken as much of the tumor from the rib as he could and the margin was very small between the tumor and the rib.
After the PET Scan in October, it identified one small spot to the left hip. I didn't start noticing symptoms until about two weeks ago, which is about a month after the PET scan showed the small spot. The two symptoms I noticed are Pain in the hip and back pain. We did labs last week and my calcium levels were normal. As they were at my last blood draw in September.
The liver mets never produced any symptoms and my Liver Function Tests were all normal. After two rounds of Taxotere, Perjeta and Herceptin, the PET scan showed No EVIDENCE OF DISEASE and I stayed there until the PET scan in October. Typically you will see the following listed as symptoms of liver mets:
•loss of appetite.
•weight loss.
•dark-colored urine.
•abdominal swelling or bloating.
•jaundice, a yellowing of the skin or the whites of the eyes.
•pain in the right shoulder.
•pain in the upper right abdomen.
•nausea.As far as the liver goes, I still have no symptoms, and my Liver Function Tests were normal. But I suspect you would have to have significant mets to experience these symptoms.
On my last PET scan (October 3rd), the PET scan showed two small spots to the liver and one small spot to the left hip as well as three small spots to the brain. After an MRI of the brain, my Radiation oncologist counted 18 small spots to the brain - which meant that I was headed for Whole Brain Radiation treatment. At the time of the PET scan, I had not noticed any symptoms to the liver or bone, but by the end of Radiation Therapy I was noticing some achiness to my left hip and some back pain to my left side. But I also have a history of an old back injury to that area from sciatica and prior to the bone mets, I would get flare-ups that were similar to the type of pain I am having now.
Symptoms of bone mets are:
- Pain
- Fractures
- High blood calcium levels
- Spinal cord compression
As far as the brain goes, there were some things going on around the time of the PET scan in October that I didn't recognize as symptoms of brain mets. I also had high blood pressure and was on Metoprolol - a drug that is recommended for women on Herceptin to prevent declines in Left Ventricular Ejection Function as well as to control High Blood Pressure in women receiving Herceptin (High blood pressure is a common side effect for women on Herceptin). I had two episodes where I had visual difficulties and I could not read the computer screen because I had double vision. I took my blood pressure and noticed that it was sitting at 180/90. I thought I may have missed my metoprolol and I took another dose - which lowered my blood pressure and restored my vision. I also noticed that I felt a weird feeling in my brain - like I was wearing a hat on my brain - but only on the left side. I didn't have another episode for another two weeks which was about the time that the radiation oncologist was counting those 18 spots on my brain.
In addition to this, I noticed that I was having trouble staying awake and I was having trouble concentrating on normal cognitive activities. I like to play fantasy football and during this time I was having trouble completing my lineups. After WBR, I no longer have this problem.
The main issue with brain mets is that it's not the cancer itself that is impacting the ability of your brain to function. It's the pressure that the cancer cells put on normal brain cells that causes the symptoms. It's what the doctors call cerebral edema and cerebral edema can be caused by many things - including infection, trauma, stroke, bleeding into the brain, radiation therapy, brain tumors, and pre-eclampsia during pregnancy.
So there's a standard set of questions you ask to determine if you are having cerebral edema:
Do you have a headache that is not relieved by Tylenol? Based on my experience I would follow up that question with are you experiencing any abnormal sensations in your head or brain?
Are you seeing any unusual spots in your eyes? Do you see shooting stars or fireworks? Double vision? As we got further into this I was noticing that some objects that I looked at for a long time (like this computer screen), would still linger in my visual field after I had stopped looking at it.
Are you experiencing any numbness or tingling in unusual places in your body? For me, I noticed an area on my left arm and left leg that would have numbness and tingling that would come and go.
Are you experiencing any balance problems or difficulty controlling what your arms or legs do? For me, I noticed that I couldn't always predict where my left leg was going to go.
I also noticed changes in my hearing. The Radiation Oncologist said it was not unusual to feel like your head is under water - and that you are trying to hear things like they are under water.
Nausea is a difficult symptom for me to recognize, but I did experience that from time to time.
Here is a list of symptoms that you might also experience:
Headaches (usually worse in the morning)Nausea and vomitingChanges in speech, vision, or hearingProblems balancing or walkingChanges in mood, personality, or ability to concentrateProblems with memoryMuscle jerking or twitching (seizures or convulsions)Numbness or tingling in the arms or legsHigh Blood Pressure (greater than 160/110)The good news is that once your medical oncologist gets the results of your PET scan, he or she will start you on steroids and every one of these symptoms will start to improve. Once radiation treatment begins, you will notice a rapid improvement in the symptoms
One of the things that complicates your treatment when you develop mets to the brain, bone and liver is that the radiaton oncologist has to treat the brain mets first before they can begin treatment to the other areas. For those of us who will receive Kadcyla as our next treatment, this is because the drug can cause low platelet counts which can cause bleeding into the brain, which is something that neither the radiation oncologist nor the medical oncologist wants to see.
So I was very happy to finally start Kadcyla on Monday.
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cbd-I have very dry eyes and use Restasis morning and night. My eyes are very teary at time, which actually is the result of dry eyes.
Regarding your supplements-does your onc know about those? I can't take anything OTC unless my onc okays it. A lot of supplements can negate the effects of the chemos.
That is the problem with the Cancer Treatments Centers of American---they give massive doses of supplements, so the chemo doesn't work.
I have counseled many patients who went to the CTCA and they all passed away.
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Thanks for all your advice - when i was diagnosed with mets i was totally asymptomatic it was only because they found some tiny spots on a follow up mammo which after a biopsy came up as idc and dcis that i had a ct scan which showed a cloudy image on my lungs. I had a chest nodule biopsy which was positive so the onc said it was in my lungs but not as a tumor but as lymphangitis. After being on THP for about 4 months my CA153 was normal and my scan was almost clean so i stayed on HP and added zoladex and letrozole. I only ever felt out of breath when i went on holiday and was walking the mountains in very hot weather.
Then in March this year i felt out of breath and really not myself but no one picked up anything until i collapsed with pneumonia (?) but in the end it was a pericardial effusion and I had almost a litre of fluid drained. Thankfully that's resolved now and the cardiologist has discharged me other than my 4 monthly echos.
With brain mets would tumor markers be high as mine have come down to normal thank G-d?
As for the supplements i take i saw a complimentary cancer consultant in the Hospital for Integrated medicine here in London and he said i was taking a good mix of vitamins, minerals and herbs. He added some homeopathic stuff including Iscador drops.
I cant say i take the supplements 100 % of the time i would say more like 95% as sometimes i decide i need a break from them and i also see a naturopath who changes the supplements every so often. I find taking them whilst on treatment helps me feel good and able to manage my busy life. Maybe i will also ask him if there is anything which could be causing the headaches.
thanks again - i find these boards really helpful!
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WOW,
Thanks ladys for all this valuable information. Really appreciate.
I have bone Mets and my Family Doctor didn't recognize the simtoms , I was complaining always about back pain, and she didn't do anything about it , she told me that allot of people have Lower back pain, but now with my experience I know that was cancer in my pelvic illiac bone...
I know now that numbness, is another simtom... And always when I was doing exercise my Lymb nodes use to hurt.....(under arm)
I really don't know why there is nothing that can be done to prevent this sickness , always when we go to doctor is late....
Even the mammography doesn't always work like in my case.... Didn't show any sign of cancer ???? Only when they did the ct scan and bone scan ,
my cancer didn't grow in my breast??? Do you believe???
I was always have the Believe that in order to have breast cancer , it has to start in your breast and it will grow and you will have chance to detected on time and react . That examining your breast will help... No in my case.....no no no....
Anyway thanks for shearing your stories
I learn allot today !!!
Have a wonderful night!!
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Regarding to the supplements ,
Is funny how some doctor recommended and others no, my doctor every time I ask if I should to take any vitamins he aswer me with smile....he said no, just eat well....
?????
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I take daily multi vitamin, and b12 (or b6), on occasion I will grab a vit d and in the fall and winter I take vitamin c.
I do seem to get few more headaches than prior to kadcyla but nothing bad. My Onc nurse said I am to take nothing but tylenol for headaches and no pepto bismol if i get upset stomach i have to take rolaids .. which I am all good dont have issue with that. I had higher BP when I was on chemo (TCHP) then it went back closer to normal once I finished chemo. now on kadcyla my bp rising again.
i am on lisinopril for my bptoday is echo day for me my onc will order these every 4 months. when on tchp it was every 3 months. next week is kadcyla.
Wishing you all a Beautiful day~
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Have a beautiful dayfor you too!!!
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Regarding supplements and alternative my oncologist originally told me to eat well however I did start taking them and after 4 or 5 doses of ac&t my scans were clean and after surgery I was told I had a complete response to chemotherapy. I have continued to take some supplements over the years. Recently I asked him for a referral to the homeopathic hospital for amongst other things acupuncture and he told me that he had terrible back and shoulder pain after using every painkiller which didn't help he tried acupuncture and after 2 treatments it was gone. So now he believes it has some place in medicine and I should do whatever I need to feel good
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