Kadcyla for residual disease after neo adjuvant chemo
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Sueba,
my doctor started me on Arimidex about a month after starting Kadcyla. That way we knew which side effects were from which drug. I haven’t experienced any nausea like I did on TCHP.
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Thanks, Susie Q. Have you found Kadcyla and Arimidex tolerable together? I figure almost anything is better than TCHP. My doctor plans to start arimidex a month after the first Kadcyla for the same reason your doc did.
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For those of you that did neoadjuvant TCHP and now on Kadcyla post surgery is it only Kadcyla or are you doing Kadcyla+Perjeta?
I'm jumping the gun a bit, not even at the half way point for TCHP but, this was mentioned as a possible next step depending on surgery results and, I wasn't really sure if Kadcyla replaced both Targeted Drugs or just Herceptin.
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morrigan, after surgery and because I had residual disease in my breast, I started Kadcyla. I don’t take any other drugs along with that but will be starting letrozole after I finish radiation. Hope this helps. Good luck finishing TCPH. Kadcyla is so much easier.
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Hi there!
I was so glad to toss my wig after 6 months after chemo. My hair was so short but I learned to like it. Im on my 8th Kadclya (the fatigue is draining me!!!). I went to the hairdresser for the first time and he took very little off my hair.
We talked about the natural hair dyes at the health food stores. As I was always accustomed to a light blondish highlighted hair he told me flat out I would hate the solid color of the natural hair dyes as he said I would have to go brown or black hair. He said I would hate it and I think he's right. My hair that has grown out is all grey and some dark so it was hard getting used to it. Actually now I get so many compliments of my hair. Unbelievable because my hair was always long going way past my shoulders, and coloured, highlighted...the works.
So I am getting used to this. I try to think of other things like gaining my strength, wanting to go swimming again ( I also fell and broke my arm 3 months ago!! when it rains...it pours!!....life has not been easy). this also affects the reconstruction which I have to put on hold....so maybe that's why I have accepted my hair dilemma.
I get it though!!....hmmmmm I would dream to have my long hair back and those highlights......maybe maybe one day!!!
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Hello Shellgirl:
I'm on my 8th Kadclya treatment. I was so upset to find out after doing a whole year of treatment that I needed these 14 infusions. Yes I know we should be grateful to have this available treatment, but after a whole year of treatment and thinking I was done....Kadclya threw me for a while there and like everything else, there's acceptance and moving on and that's what I did.
My side effects: fatigue has gotten worse as the treatments went on so I would say after the 5th treatment. The fatigue is so real....would love to hear from anyone else who is experiencing this.
ps. I also broke my arm 3 months ago and the physiotherapy twice a week may be contributing to this fatigue.
take care all.....we will all get through on the other side.....can't wait for end of June 2020 as I will be done treatment exactly 19 months of cancer treatment!! I am on letrozole and was told I would be on that for 10 years. 10 years of life sounds great !!!!
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Morrigan: I did Perjetta first.
Kadclya after surgery, after radiation. after Herceptin only treatments about 6 of them that treatment was exchanged for Kadclya which I understand is Herceptin and Chemo combined.
Also a question: anyone on here experience cough and cold like symptoms from Kadclya??
I remember Herceptin would make my nose run, but now with the coronavirus around us....wondering if my cough is normal...seem to cough at night but VICKS vapour rub is helping (my hubby swears by it!!)
Enjoy your day all!!
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SUEBA: take it step by step....good luck ....we will all get through this....
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hi countca04 - when you broke ur arm did you have to stop the kadcyla? I love cycling but I’m afraid that if I fall and break something my onc will stop my infusions - thanks
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Countca -- I have what seems like a bad cold now, 5 days after my first infusion, but I think it is really a cold.
I did almost pass out yesterday though -- suspect that was the Kadcyla hitting. Now not sure if the body aches are the cold or the Kadcyla
I was also thrown for a loop by having to do all this extra treatment -- every loop this cancer has thrown me for has caused emotional turmoil. Just trying to keep putting one foot in front of the other
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For Morrigan -I'm only doing kadcyla. My oncologist said that they don't do perjeta after bilateral mastectomy because there is no breast tissue. I didn't really dig deep into what he was saying though
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@Sheba - thanks this is all good information. I never even thought to ask about Perjeta afterwards, just assumed I'd continue it in some fashion. I will add it to my list of questions
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Hi FNPMom :
Im doing physiotherapy 2 times a week and just started swimming pool exercising today. I was on #2 Kadclya when the fall happened (slipped on a dirty floor in a restaurant while on vacation...totally sucked!)
I continued with Kadclya and the oncologist says to treat the arm pain as needed and do the physiotherapy or whatever necessary.
I like to do some cycling not too far like 3 km and I'm afraid of falling again but now its all in my head. I know I have to continue its just been hard....
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Hello Yeslamadragon:
Well that's been my new motto.....PUT ONE FOOT IN FRONT OF THE OTHER....I thought after a year of treatment I was done, so Kadclya threw me for a loop and I was so anxious thinking about another 7 months longer in treatment...19 months when I'm done end of June 2020. Breaking my arm in November was just another hurricane in my life...Thank God for the good people in my life, an amazing husband and two wonderful daughters....dont' know what I would do...
It's hard....so everyday.....put one food in front of the other...and I continue and march on!
Prayers and hugs xoxo
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Hello all: just an update on cold/cough....so with the Kadclya #8: I found the fatigue lasted longer....8 days instead of 4 days and I had a runny nose and a bad cough for about 3 nights.
Very thirsty, I keep a water bottle next to me so I can drink water all night long, means I get up too ...but the thirst is real and all day I'm drinking water as well, ice water.
so now its Day 9 and I'm feeling more myself, fatigued a little (I've been swimming though) and the cold cough seems to be gone. So I think it is the Kadclya and trust me with the Coronavirus spread I was ready to go to Emerg Sunday night or the doctor on Monday / Tuesday.....
Thought I would share because this Kadclya treatment for residual disease is fairly new treatment since May 2019 when it got approved.
take care all !
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Heres the info I received about the drug, Perjetta:
I was given Perjetta treatments (4 of them) before surgery and after AC chemo treatment. I was told that Perjetta was a drug developed I think about 7 years ago and was successful in increasing the odds of survival from like 75% to 82% (in other words, +7%) for Stage III and to lessen the chance of recurrence. So my husband and I thought it was worth this small positive outcome result even if there was a cost to us. We had to go to a private clinic (Toronto, Ontario, Canada). There was out of pocket cost for this drug but our insurance company covered then 85% of the $40,000 cost.
Hope this helps...
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I just completed my 10th Kadcyla tx. I agree with the fact that the further along I get, the more I feel fatigued. I have nose bleeds, some neuropathy, and joint pain. the neuropathy is treated with Cymbalta and has worked incredibly well. my liver enzymes have been elevated the past 2 treatments, but have held steady, so mo believes its the kadcyla. I started TCHP nov 30th, 2018 for 6 treatments, then mastectomy april 1, 2019. residual cancer remained although the surgeon said it "looked good" because they were dead cells. the one lymph node that was involved showed only micro cells. so the chemo did eradicate the cancer for the most part in the lymph node. I continued on Herceptin and perjeta bc I started 33 rounds of radiation may thru july 5. my mo would not do kadcyla and radiation together. I went to emory for second opinion and they agreed to start 14 rounds of kadcyla like my local mo suggested. I did have a minor setback in july when my port became infected. I started kadcyla in august. will complete #11/14 on march 13th. I have worked through the first 6 rounds of neo chemo and all of kadcyla. I feel very blessed to be able to do so. I will hopefully start nerlynx after kadcyla. also, will have left breast removed in June and reconstruction. I am fearful in some ways to end treatment, but excited to be done with this journey. God is my saving grace! if anyone has any help with the flap recon, please let me know. I don't see my surgeon for until next week.
Dx 11/08/2018, IDC 5cm, stage llB, grade 3, ER-PR-HER2+ (1 positive lymph node)
Chemo 11/30/2018 TCHP X 6 tx
Surgery 04/01/2019 Right mastectomy, sentinel lymph node removal
Radiation May 2019 x 33 tx
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@Melissa - is Nerlynx after Kadcyla your choice or recommended by you MO?
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the mo at Emory doesn't like nerlynx because of the diarrhea that it causes. But I worked for a oncologist many years ago who has been in research for years. He strongly recommends it. I've just got to see if there is info on nerlynx following Kadcyla. Kadcyla is new for early stage so most research is nerlynx following herceptin/perjeta. The oncologist at Emory only said, she didn't like the diarrhea that goes along with it. So, I'm assuming it can be used. I think I'd rather take my chances on the side effects for a year.
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I just did my 7th round of Kadcyla. I was coughing a lot at the beginning, but I think I had a cold. Started Tamoxifen on 2/17. I’m totally tired all the time. But I also don’t sleep very well. Started using a weighted blanket to quell the tossing & turning - seems to help a bit. However, my sleep is far from restorative - I dream all night. Definitely thirstier than usual. So yes, I get up at least twice a night to pee. This not sleeping really stinks.
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Hi everyone,
I had Kadcyla #11 of 14 today. I asked my MO if the side effects of Kadcyla were cumulative, like the TCHP. She said no, but I feel otherwise. I’m more tired with each one, but still able to work full-time. I also have very vivid and strange dreams. I’m really thirsty most of the time. My joints & muscles ache, but walking, yoga, light weight lifting all help, I just have a hard time fitting exercise in. I try to go to the gym 2 times a week. I’ve developed some neuropathy in my hands & feet, which I didn’t have during the TCHP. It’s more annoying than anything.
Sometimes I have trouble falling asleep at night, but mostly it’s getting up in the morning that’s so tough. I’ve never been a morning person but I’ve REALLY struggled getting up & out if the bed in the mornings. I’ve overslept & my 9 year old had to wake me up! I’ll be glad when I’m done with Kadcyla.
When I had surgery in July 2019, residual disease was found so H&P were done and switched to just Kadcyla. no need for Perjeta b/c it didn’t get rid of all the cancer during the 6 rounds I got pre-surgery.
Question: has anyone noticed the hair on their legs or underarms just stopped growing? Not that I’m complaining, hey, I’m THRILLED, but wonder if others have experienced this too
Angie
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Yes, Adhoney, the hair on my legs and under my arms has basically stopped growing. I shaved one time a few months ago because I had some straggly growth. But since then, it’s pretty smooth. I’m happy too
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I too have achy joints - Celebrex has been helping it - never had much hair on my legs but my eyebrows are thinning and my hair is slow in growing longer but it is there, I'm rocking a cool pixie cut 😊 just worried about my immune system with the corona virus in the offing - I'm a family practice np and we are first line with this thing - stay safe everyone
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Hi All - I had my first Kadcyla five days ago and wanted to give a report to our own little data base. Hopefully it will be helpful for anyone trying to figure out what kadcyla treatment could be like.
Overall, my side effects have been manageable for me. I was given a long acting anti nausea drug before my infusion. I think this helped. I've had some heartburn and some rumbly tummy for the first two days, but no nausea. I've also been tired. For me it was a different type of fatigue than the type I had with TCHP. TCHP made me feel hollow, spaced out, body tired. So far kadcyla has just made me sleepy. I've been able to nap each day and go to bed early and that seems to work. The sleepiness has been dissipating each day. I did have some body aches on day two - I did my yoga video, went to bed and that was over too.
Overall I would say that Kadcyla #1 was manageable for me. Hopefully it stays that way.
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3rd Kadcyla yesterday. I have to say, so far so good. I don't want to jinx it - but..For me, a little tired but not as tired as with TCHP. I try to nap and walk. I think that saved me with the TCHP treatment. Certainly anxious as all hell about coronavirus. Mostly keeping my distance from everyone (except the medical practioners! ).
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Jumping the gun (once again) but, I just had my 3rd round of TCHP. Met with my MO this time and, I asked about my immune system with Coronavirus. He advised the same as everyone social distancing, stay away from crowds, stay 6 feet from people, wash hands and use sanitizer, etc. I'm mostly sheltered in place just now trying to figure out how to order grocery delivery to avoid going out in that mess.
When asked, he said my immune system should start to recover in 3-4 weeks after my Final Chemo. He also said that H/P wouldn't impact my immune system (once the TC is over) and IF I need to switch to Kadcycla that was a targeted chemo drug not like TC so it wouldn't damage my Immune system.
Just curious as to what your MOs have shared?
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Hey all! Just found out I will be starting Kadcyla in April 10. I appreciate all of your posts. It helps me understand what may be coming my way.
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Some good news to share! My genetic testing came back with no known mutations! YAY!
So just random bad luck.
I work in health care, so my MO is advising I minimize direct patient contact while on Kadcyla. But much less immuno-suppressing than TCHP.
My eyebrows are thinning, just when they had finally grown back! But I am not sure if it is the kadcyla or the post-chemo cycling that some people report. Unfortunately, as spring approaches, my leg hair is regrowing enthusiastically!
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Has anyone had drops in their R/WBC counts while on Kadcyla? Neulasta kept my WBC good thru TCHP, but I became badly anemic halfway thru and could hardly move. Neualsta and steroids are NOT given, correct? What about alcohol consumption, were you all told not to drink while on it, since it can affect the liver enzymes? I'm scheduled to begin Kadcyla when I finish radiation next month, but of course the pandemic timing has me nervous about taxing my immune system even slightly...
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Heartshaped - I have already taken Kadcyla three times. R/W bc drops slightly but has not gone too worrisome low. No steroids or neulasta. I take anti nausea pills right before and that's it. So far I have been doing well and didn't end up even taking the glutamine . I wasn't told anything about alcohol but just decided it makes sense not to drink right now. My MO did say that platelets would be low around days 5-10. I am definitely on edge due to the pandemic and Every little ache has me concerned.
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