Kadcyla for residual disease after neo adjuvant chemo
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Hello everyone,
I have asked a question on this site before, but I don't know how to see if anyone answered. How do I check to see if I got a response?
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You can add that topic to your favorites and it will show you if there have been any responses added
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Hello everyone,
I wanted to post my experience with Kadcyla as I do not see detailed experience of this drug. I am stage 4 triple positive and have had few other treatments before. Cancer is in my lungs, spine, lymph nodes and I also have some problem with adrenal glands as well as enlarged liver. I just got my first Kadcyla treatment yesterday at 11:30 AM. I am taking Kadcyla alone despite my doctor offering Taxol and Carboplatin as well as herceptin Perjeta combo. I choose only to do Kadcyla.
Before I went to my appointment, I have taken 4 natural hihgland anti nausea pills, and have taken 20 mg. Pepcid. AC I take Pepcid every single day because Herceptin and Perjeta has damaged the lining of my stomach and it hurts every day. Dr. had recommended that i take this drug.
I was at unease as I was so afraid of this drug. The nurse had use my right arm to give me the drug. She first gave me 2 Tylenol to take. Then, I was crying, she had giving me Adderal by mouth. After that, she gave Zofran for anti nausea through IV, waiting 15 minutes. She then gave me Benadryl through IV. She followed by Kadcyla.
She has said that the whole thing was going to take 90 minutes, but each medication, explanations, getting ready and blood work has taken such a long time that we were there for 5 hours.
1- Drug called Adderal made me a little dizzy but tolerable.
2- Benadryl made me extremely sleepy.
3- I didn't feel anything with Tylenol.
4- I didn't feel Kadcyla going in because I was very sleepy. I have slept most of the infusion time.
The nurse took the IV out and wrapped my arm and have told me to take the wrapping when I got home. To be safe, I kept the wrapping on my arm until next morning. The same evening when I got the treatment, I threw up around 8 PM. I only had orange and apple and lots of water after that. Also many slices of cucumber.
Next day (today) I woke up feeling ok. I slept good, possibly all the drugs in my body. After my shower, I felt a little dizzy and nauseated. I took Pepcid again (20 mg) and Had some gingerale (real ones not the naturally flowered ones) Reeds ginger ale and one other brand from Whole Foods. Had only saltine crackers for breakfast as I felt nausea. I have taken Hyland's natural anti nausea medication instead of Ondensantron. I want to see if I can control the nausea naturally and so far it seems to work. I am making chicken soup and red lentil soup. I will hopefully learn where to find my post so that I can update my symptoms and remedies with everyone. May God bless every one of you with his love and light. I pray for everyones miraculous recovery.
Love and Light
Star
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Three Kadcyla cycles.
I hear people talking about joint pain. My legs hurt . Mostly my calves, more at night although occasionally during the day as well. and sometimes at night I seem to suffer from restless leg syndrome. Massage does seem to help (thanks DH)
Has anyone experienced this?
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I have been taking Lyrica which has helped my pain IMMENSELY. I thought I would have to discontinue treatment the pain was so bad. I’ve been on it for 2 weeks and it’s been a game changer. I just had my 5th Kadcyla on Friday, pretty good so far 😁👌 I hope it may help to get the word out because I discovered it myself, my oncologist never brought it up 🙄 I wish you all safety and health right now
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Hi Starlove, I hope you’re feeling better today.
Flowerkid: i’ve had 11 doses of Kadcyla & I have muscle & joint aches & pains all other. It truly helps if you can be as active as possible, exercise, do yoga, go for a walk. When I’m still for more than 20 minutes I can feel the aches come on. I try to stretch my legs as often as I can b/c that helps. I’d have to agree that at night it’s more difficult to get comfortable b/c of the legs aching.
Projecteddreams: good to know about the helpful benefits of Lyrica, I may need that. I’ll restart Anastrozole once I finish this Kadcyla. The AI causes joint & muscle pain too. I’ve ordered some tart cherry capsules b/c I’ve read on some other post that they help with the aches & pains too.
I pray that everyone stays well & avoids this corona virus. Prayers for healing & comfort ladies.
-Angie
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KADCYLA UPDATE:
Hello everyone,
thank you for chiming in. It definitely helps to read your experiences with this drug as it is new for me.
Update: Day 3 of Kadcyla.
I was nauseous during the day but hylands natural anti nausea pills and ginger ale helped. During the night, I had experienced horrible head ache. It woke me up aroun 2 AM. I raised my pillows to help with the headache with no avail. I had to sit in bed and rub my head. Since that didn't helped me at all, I had to take one Advil. That only helped for couple hours. I was awake at 4 AM again. I couldn't go back to sleep. I sat in the bed again. After sitting in the bed and massaging my head, I managed to sleep few more hours, but the headache continued so I had to get up and take 2 Tylenol. That helped a little, but the headache is still lingering.
My stomach started hurting at night and still hurts. I keep taking Pepcid AC. I could feel the acid eroding my stomach despite taking Pepcid AC. I may try Nexium tonight as I get no help from Pepcid AC.
I had some joint pain, but that is manageable. The most discomfort for me was from the horrible headache and stomach pain with excessive acid. I maye not continue this treatment if the symptoms persist. I hope everyone have a blessed and comfortable day.
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hello starlove - if the nexium doesn’t quite help it - ask the onc if carafate is ok for you to take - it coats the lining of your stomach - used to heal peptic ulcers - taken in liquid form 10 ml 4 times a day or if you have regular mealtimes, an hour to 30 minutes before meals and at bedtime - if insurance won’t pay for the liquid form- crush the 1 g tablet and add a tablespoon of water - I hope this helps
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Thank you for the suggestions for leg issues. Thankfully the leg issues aren't so bad at the moment. My MO said to try multivitamins with high vitamin D and c..also thinking for down the line when they put me on aromotase inhibitor which may increase risk for osteoporosis, she said taking certain vitamins can give me a jump start. She also said heat and exercise/movement as Adhoney said. I do walk daily and will try to move a bit more!
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Hello FNP, mom. Thank you for your reply. I have contacted my doctors office but they have not responded for the medication. Instead, they've asked me to go to the ER. Which I have not done so.
Hi Adhoney, thank you for your reply. I wish I could do some yoga, I went to the store to get some water. That is the only thing I could do, because of my back pain is very bad. I will not do Kadcyla again, too many side effects.
Hi flower kid, thank you for your response. Its good that you can handle 3 treatments. I can not handle not even one.
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KADCYLA update 3.
It has been 10 days since I was given this drug. The side effects that are caused by this drug are horrendous. Everyday new side effects are adding up to already existing ones. My nausea is under control, constipation is somewhat under control. I don't take Zofran because of its many side effects. I've only taken Hyland's anti nausea medication that is natural. It had helped for sure.
Here are the list of symptoms that I have after KADCYLA. My doctors office has ordered me to go to the ER, but I do not want to. I just don't want to be in the hospital, get poked, given more poisonous drugs, send back home and wait for ridiculous bills to pile up.
nose bleeds (getting better)
gum and tooth pain, jaw pain
dry mouth (last three days)
extremely painful back
fatigue
stomach pain
stomach burning
painful throat
joint and muscle pain
headache (went away)
nausea( went away after few days)
bruises on my legs
sleepiness
constipation (got better)
tingling of the extremities
sores and breakouts on my scalp
hair loss
break out on my face (multiple) I never get breakouts
taste change
Brain fog
Has anyone experienced any of these symptoms on this drug? I will not do any more of this treatment. I can not handle it. I may opt in for radiation therapy of my spine. I have 6 lesions in my spine. Do you guys think that 6 lesions on the spine it too many to treat?
What type of side effects do I look at if I only do radiation treatment for my back to kill tumors that are growing into my spine?
I am currently waiting to hear from my doctors office. I didn't go to ER and they have asked me to go for evaluation three times already. I am not sure why they are pushing me to go to the ER? I am not a doctor of course, but do you guys have any idea of why my doctors office would suggest this?
Another side effect I would like to add is that, I have started my period 4 days ago, so my period is bright red color and it doesn't look like it is going to stop any time soon. How lucky am I? Just as I am on a drug that reduces the platelets and RBC count, I get my period. Thank you for all who chime in. It helps a lot with what others have gone or going through.
Love and Light
Star
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Yes i have most of these side effects headache, gumandnose bleeding, bruises, dry mouth, fatigue, bone and muscles pain, vivid dr
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I had my 1st Kadcyla infusion yesterday. I decided that I would add Ginger Root to my vitamin line up to quell any nausea.
My joints (elbows, wrist, and fingers) were hurting before my infusion because I was not doing anything while recovering from my bmx with reconstruction. I was having trouble getting my body to stop producing fluid so I was ordered not to do anything until the drains came out. Three weeks of doing nothing made me soft. So now that I am working from home and walking, it’s getting better.I made a point to walk during my 6 treatments of TCHP to ward off tiredness and nausea and it worked so I’m hoping it will for Kadcyla.
They also started me on Tamoxifen yesterday too. I took it at bedtime last night. I also got a double fill of my TEs yesterday. I’m done with that and waiting on exchange surgery. So far, that’s all that is bothering me this morning.
I hope you all are doing well
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Starlove - it has been a week since your post. K hope that you are feeling a bit better and have not had to go the hospital.
The past few days I had a low grade fever and headache and was dealing out about covid19. But then reread Kadcyla side effects and I truly think my issues were connected. Hopefully I won't have any fever tomorrow when I go for radiation.
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Tolerated 9 out of 14 Kadclya.
My oncologist put the Kadclya on hold for a while, as some of my symptoms have been coughing and of course with the coronavirus is something to keep an eye on. The hospital did an X-ray on my chest to be certain and all came out okay. Coughing has gotten better now 3 weeks since my last treatment.
I feel so much stronger with out another treatment. Tuesday the oncologist decides whether to continue to the end. My feelings about this is I had enough treatment. The neuropathy is bad enough I feel numbness in my toes all day. I want this to go away. The fatigue is better since I didn't have my last treatment. Truly have had enough!
Let's see what the oncologist says but I have to make a decision for what's best for me. How many others didn't finish Kadclya. I have already done 7 doses at least of Herceptin alone and I did Perjetta too.
thank you
Everyone stay safe and be well ! hugs,
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Hi All - it is two days after my 3rd Kadcyla treatment. I’ve had more nausea this time - bummer. At least I know how to deal with it based on my TCHP treatment experience. My liver function testshave been pretty wonky - my LFTs are high a week after Kadcyla and then return to high/normal by the time I have my next treatment. I wasn’t surprised by this since I have autoimmune hepatitis. Thankfully my hepatologist has been coordinating with my oncologist to adjust my liver medications. So far Kadcyla is not fun, but I’m glad that I can still stay on it.
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It is very helpful to read everyone’s posts. My first treatment last Thursday (almost a week ago) started out not being too bad compared to Abraxane, but then....wowza! This past weekend was much tougher with nausea and body aches. I felt like I might be starting to get a cold/cough, but today is better. Sleep has been elusive, but I’m so tired. It is tough to get up for work in the morning.
I think the combination of Gabapentin (for surgery related nerve damage and chemo related neuropathy) and Kadcyla is not good. I called my local pharmacist and he said there was nothing noted in the database but maybe Kadcyla is too new. Anyway, I am going to ask my doc to take me off of Gabapentin.
I had a low grade fever last night but I’m fine today.
Since I’ve continued getting mild headaches and mild nausea, I asked the pharmacist today if I could take 1/2 dose (4mg instead of 8) of Zofran. He agreed and that dose eased my nausea.
Doing Kadcyla for a year is definitely going to be a challenge. I’ve just started to climb the mountain and I’m already tired. I think I’m going to need a good Sherpa to make it to the top. Fortunately, there are many on this forum. 🙂
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cyathea how much gabapentin are you taking and are you taking twice a day (which is usual)? Since it can cause sleepiness, especially if you haven't been on it long-term, when I was at 900mg my onc had me taking it all at night before bed instead of splitting it up. That way it didn't make me sleepy during the day and would actually help promote sleep at night. My neuropathy seems worse at night (likely because there's nothing to distract me) and can keep me up at night, so taking it only at night works out really well for me. The addition of melatonin with onc's permission helped regulate my sleep too. When I had to increase gabapentin to 1200mg, he told to me take 600mg in the early evening and the other 600mg right before bed.
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So I did 9 of the 14 required Kadclya. This week the oncologist felt that my body has had enough treatment....I had 11 Herceptin and 9 Kadclya and that should be sufficient. I am so glad. The Kadclya treatments side effects worsened at #7, #8 and then #9....and now with the COVID my oncologist and I agreed that it was important for me to get some strength back after almost one year and half of non stop treatments....incl chemo, paxitaxol, surgery, radiation....just too much.
Side effects from Kadclya:
UTI (3 times, incl blood in urine, scary shit!!)
Fatigue
Neuropathy (3 toes on each side of feet are numb all day) hopefully this will go away as I had for my chemo treatment and it got better. My oncologist felt that he did not want me to continue with Kadclya and risk the possible permanent Neuropathy damage.
Nose bleeds
Naseau
Coughing (it's getting better....try getting to a test in hospital with a cough from this medication and the COVID virus concerns)
Take care everyone. We stand together and if you're feeling scared like me with this virus and not wanting to get sick....hate that I can't see my adult kids....miss them and my mom who's in a nursing home.....miss them all terribly and makes me sad especially after all this treatment and was looking forward to feeling (finally) well this spring and summer. Ahhhhhhhhhhh when will this end?????????????
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LoriCA I was on 600mg Gabapentin a day. My doc said it was OK to stop taking it. I think that was the right decision since I’m able to sleep better now.
Unfortunately, sleep hasn’t been great because I’ve had a low grade fever the last few days. My headaches, body aches, and nausea continue. I also have an occasional cough, but it is not like the kind of cough that you have when you get a cold, so I think this is likely from Kadcyla.
In some ways, I think I fared better on Herceptin and Abraxane, but maybe I’m forgetting how I was after those treatments. I remember being tired and achy on day 2, 3 and 4, but I think I started to feel better after that. I had treatments every week for 3 weeks and then had one week off. Now that I’m getting a higher dose and only going every 3 weeks, my body isn’t tolerating this so well. I’m disappointed because I thought this would be easier than my previous chemo.
countca04, I’m glad you are able to end your treatments early. I pray you can enjoy feeling better soon as we celebrate the spring/summer weather from home
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Hello everyone,
thank you for your posts. It helps me very much. I have stopped Kadcyla until I get my scans PET/CAT, MRI brain and spine. I have talked to my doctor about the horrible side effects of Kadcyla and she recommended Enhertu. Upon checking that drug online, I got scared. Is anyone on Enhertu?
She also said the bottom of the list treatment would be tamoxifen, and couple more drugs with one injection to put me in a menopause. But she said that would be the last option if I can not tolerate Kadcyla again or Enhertu.
I've asked my oncologist to try Kadcyla one more time. Her nurse told me that she will have me on low dose for the next treatment. I am not looking forward to it. Most of the symptoms that I had was gone after week 3. However, fatigue and itchy scalp is still there. So I had 3 weeks of dealing with side effects and feel miserable.
I have been having dry mouth issues. It started about couple weeks before Kadcyla. I am not on any other treatment. I am not sure what is going on, but I drink 3 gallons of water every day. I pee a lot. Wake up 10 times a night to drink water and pee. Its horrible. I wake up in the morning to my lips glued to my gums and teeth. I am not sure what is going on. I can not eat bread or anything that is dry. I eat fruits and salad. Also yogurt. Can not eat chicken or fish, meat, rice etc. I got a protein drink called "Orgain organic protein shake" Got vanilla and chocolate. Its delicious and easy to drink. I have t get more of those.
Dr. has told me that it could be brain metastasis. She said that brain metastasis could cause electrolyte imbalance which in turn would make me very thirsty. My brain MRI is on the 30th. Just had my PET/CT scan yesterday. After my scan results, she wants to decide the treatment. I was hoping to have radiation for brain mets and 7 spots on my spine. I am not sure if it is a good idea. With Covid issue, I have to talk to my doctor on video. Which was okay. She also ordered 24 hour urine collection. I had filled the urine collection jug in less than 3 hours. So we had to go pick up 4 more jugs. I am sure the lab staff will be shocked with 5 jugs of urine for testing. I feel so embarrassed.
Thank you for asking for me and your replies. It help me very much.
Love and Peace
Star
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hi guys - I'm about to get my 8th kadcyla dose next week - the mouth dryness is subsiding - m achy in my right elbow and now in the left hip/leg - I've had Elbow X-ray which was negative - I will wait until I see my onc next week to complain about my hip/leg aches and pains and see what he says - the Celebrex does help - the liver enzyme has normalized - doing ok on the tamoxifen - will be doing a transvag US of my uterus for baseline, so I can determine if I want that and the ovaries out when I do AI - onc says he'll do that after a year on tamoxifen - thank you guys - hang in there - keep safe esp if you’re a front liner
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starlove - I had horrible dry mouth with TCHP. My MO recommended Biotene and gave samples. The mouthwash worked OK. I never tried the toothpaste. But the spray was marvelous. I kept it by my bed so I didn't have to get up in the middle of the night when my mouth was a desert. It worked very well for me
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Just jumping in to say I've been using Xylitol Melts (On TCHP) for when I sleep. They stick to your gums and melt over 4-5 hours.
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3rd infusion was a week and a half ago.
Thank everyone here for posting! It makes me know I am not alone!
The dry mouth is incredible -- it feels like it is dry even as I am drinking! Thank you Morrigan and Minus2 for the Biotene and Xylitol recommendations -- I may need to try those.
My pain is mostly in my upper back, both the muscles and the spine. And even the skin really hurst for several days! Like it has been sand-papered raw or something. First cycle I thought I must be getting shingles, but then it was on both sides. I really wish I could get a massage, but of course that is out right now!
I am also needing more sleep -- about 9 hours a night. Still able to work, but I get sleepy mid-afternoon.
I think the neuropathy is getting worse, but it does seem to fluctuate so hard to tell.
I don't have a whole lot of nausea, have taken ondansetron a couple times, and tums a couple times.
I did get a prescription for gabapentin from my RO, but once i worked up to 300 mg at bedtime I had to go back down to 200 because I was just too sleepy. LOL -- I have always been a lightweight when it comes to any medications!
I suspect my platelets did drop this cycle because I had a few days of bleeding gums and hemorrhoids (the rewards of TCHP continue!) but that has resolved.
And that is my litany of complaints!
We had snow overnight, but the forsythia and daffodils are blooming, and I know as the days get longer and the sun stronger and I am able to get outside more I will be cheerier. Meanwhile, I am trying to take one day at a time. This is such a long road, though!
I hope everyone has a beautiful, pain-free day!
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Just thought I would check in after infusion #2 on Friday. I decided that I would be more active the weekend after my 2nd infusion to help ward off the muscle and joint pain I had for 5 days after the first infusion.
I was feeling so good I over did it. Mowing the lawn. Putting patio furniture together. Sweeping and mopping. It was all too much without proper downtime. Monday, I felt terrible - like I was getting the flu. By noon, I had to stop working (from home), go take a shower, and get in bed. I stayed in bed off and on from 1pm Monday until 7am this morning. I feel much much better. Don’t be a goober like me andover do it the first few days after Kadcyla.
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Hi All - just checking in after Kadcyla #4. So far it is about the same as my last 3 treatments...nausea controlled with zofran/Ativan. Fatigue, heartburn and constipation. I am still able to work, so this is much better than TCHP. This time I’m noticing more dry mouth and dry eyes. I’ve also had lots of cramping in my feet and lower legs...have any of you experienced that? I don’t know if it is Kadcyla or something else. Hope you all are doing well.
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Hey Sueba!
I go in for #3 on Friday. I am getting the dry mouth bad! I also feel slight cramping in my calf muscles from time to time. I do put it down as a Kadcyla SE.
It is better than TCHP for sure!
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I’m only on treatment #2. The dry mouth is unbelievable. I’m using Biotene and that does help, but I really had NO IDEA how annoying dry mouth can be until this last chemo. I got a canker sore as well. 😕
I think this is a classic example of why doctors who have never experienced a particular side effect are sometimes quick to dismiss the impact of “minor” SEs on our quality of life. Ugh! Just Ugh! I hope this is worth it
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I finished 14 rounds of Kadcyla on May 11. The side effects were doable but extremely annoying by the end. The dry eyes & mouth, the aching of muscles & joints, the drippy nose & nosebleeds, the fatigue!! They say the effects of Kadcyla aren't cumulative but I beg to differ.
I have to restart the Anastrozole 3 weeks after my last Kadcyla but I really may go 4 or 5 weeks. I just want to feel really good again. I guess mainly for the simple fact that I know that I'm able to feel good without the meds in my system.
I hate cancer. It really can mess things up. On the bright side, it has given me a new perspective on life. It's brought me closer to God. It's strengthened my Faith. For those things, I am grateful.
Angie
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