Kadcyla for residual disease after neo adjuvant chemo
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I don’t ice my hands or feet. I’m about to have infusion #6 Tuesday and have not experienced neuropathy
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i don't ice but, I haven't had issues with neuropathy since I started taking B6 and ALA during TCHP.
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mmorigan - my oncologist has been kind of against supplements, but I’m definitely going to ask about this. It just seems weird to me she mentioned neuropathy but no one ices.
AmgieB92 - I’m glad you haven’t had any issue with it
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Fab4mom , my MO doesn't recommend supplements either, but he did recommend daily B6 as there is some data showing that it has a statistically sound benefit. I started taking a B-complex vitamin soon after I had neuropathy symptoms while I was on Abraxene and Herceptin. I can't say that the B vitamins have reduced or eliminated my neuropathy, but at least it is not progressing up my feet and legs. My uncle had numbness up to his knees when he was on chemo for melanoma. Mine is just on the bottom of my feet, around my toes, and just slightly numb on the top of my feet but not around my ankles. I did not do cold capping for my head or icing for my feet. One of the PAs mentioned icing during treatment as an option, but I have not done it. My cancer center doesn't do this for you so you have to do it on your own if you want to do it. My reasoning was that I was already experiencing discomfort during chemo that I didn't want to add to my discomfort by having cold feet. The cost/benefit analysis didn't work for me, but it might be good for you in that it is an action that you can take to be in control of trying to prevent the neuropathy.
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Thanks for the input Cyathea. I did ice during TCHP chemo, so I have the booties and gloves, and I didn't get any neuropathy. Just wasn't sure about with Kadcyla
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I already had neuropathy from Taxol (I didn't know about icing the first time I did Taxol). It started getting much worse on Kadcyla so I started icing on my 5th infusion. I only ice my feet because neuropathy has never affected my hands.
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Hi everyone,
I have been active on other chat groups. I had my double mastectomy with reconstruction last Monday July 27th. There was residual cancer in my tumor (I went through 6 rounds of TCHP from March to June) but my margins were good and my lymph nodes were clear. So I am going to be starting Kadcyla next Tuesday for 14 treatments every three weeks. I am thankful this group is here and I have been reading through the thread and super grateful. I wanted to reach out and introduce myself as I found that the support of these groups has really helped. Our March chemo group has stopped with regards to activity. I thought I was ok and accepting that this might be my course of treatment if I didn't have a complete response to chemo but yesterday it hit me and I just cried the entire day. I think I am have been more emotional because I am recovering from major surgery, have just had the hardest last 4 months with chemo and the thought of how much more treatment that is ahead of me is just overwhelming especially now that I need to do the Kadcyla. It's the unknown of how I will respond to the medication that's hard right now. I really am wanting my body back. I have gained the weight I lost last fall into this February which was just about 15-20 lbs but that is a lot for me. I am feeling uncomfortable again in my clothes and am excited to be able to get back into my exercise routine once cleared from surgery but worried about how I will be feeling with this new medication. Overall though I have been able to stay positive I just have a roller coaster of emotions throughout this entire ordeal and it is hard to see the end in sight. I am so thankful for these groups here and thank you for reading my post. For those that have had a double mastectomy with reconstruction how was your pain and how long did you need to take pain medication for it. I am still having quite a bit of pain and just wondering how others experience was.
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Cassandra - I’m so sorry you are feeling down after surgery. Cut yourself some slack - your body is workin g hard to recover from this major surgery and it is not uncommon to feel the way you do. I promise it will get better!
I think of the Kadcyla as that extra bit of insurance. I, too, had clear margins and no spread to my lymph nodes so I visualize the Kadcyla searching throughout my body to find any straggling trouble makers and eliminating them!
As for pain management after surgery, I was fortunate enough to just have to take Tylenol and Ibuprofen for pain. I found my worst pain was really tightness in my pec muscles if I overused them.
Keep your head up and keep moving forward!!
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Cassandra- Hang in there. I had my DMX in July 7 with expanders. For me, they found residual and I had a positive node, so I had to go back in on July 14 for a axillary node dissection. I felt devastated then, because my MRI before surgery showed a complete imaging response. Thankfully it was only 2 nodes out of 24 positive, but I’m now preparing for radiation and then Kadcyla. I totally understand how overwhelming it all is, it’s such a long treatment plan. But, I also like to think of how lucky we are to have treatment that is preventative and targeted to Her2. I have a friend with triple negative, she finished radiation, and now she’s done with all treatment. Back to normal life, but the stress of not doing more would be worse for me.
As for the pain, I’m about a month out from mastectomy and I’m pretty much healed up. Working on my range of motion exercises. The first two weeks the pain jumped out at me when I moved certain ways, but I was ok on Tylenol after the first few days. I’m still sore in my armpit from the nodes, but it’s more nerve pain.
We’ll be going through radiation around the same time, and we can do this. When I get overwhelmed, I break it down to one step at a time, and I feel like each step is easier than the last. TCHP was the worst, then surgery, now radiation, etc.
it’s definitely a roller coaster. My first visit with my radiation oncologist was last week and she was so blunt about my large tumor that had gotten to the skin. It sounded so dire, and really put me back to that dark fearful place. But I know she was just trying to explain to me how radiation will kill cancer hiding in the skin or nodes, so I need to focus on what I can control. It’s not always easy.
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Hello All!
Cassandra -- I know I sure went through that roller coaster of emotions at every step. Hang in there, be kind to yourself, give yourself space to grieve what you thought the plan was! I had more time to adjust than you because I had to do 7 weeks of radiation before I could start Kadcyla but I sure shed some tears as well.
And an update for anyone else who has paid attention to my journey with neuropathy: My neuropathy is under better control and I restarted! So I had my 7th Kadcyla this week and now I can officially say I am half way through
Some worsening of the neuropathy maybe but nothing like what it was. I am making sure I exercise every single day no matter how tired I am or how hot it is! I am very much hoping the neuropathy is getting better because it was from the Taxotere and that I will have relatively clear sailing from here on out. I can already sense that my appetite is lower again, though, and I am getting the acne rash again. So that is a bummer. Oh, and that weird upper back pain and burn is back. But those are all relatively minor annoyances.
I hope everyone else is well and enjoying the weekend!
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I just had my mastactomy July 29 and after talking with my oncologist today she will change me to Kadcyla untill may 2021 (14 cycles)😩 because of the residue in pathology report same as you. I will start my Kadcyla this Wednesday Aug 12, I don't know what to expect, and also next day Aug 13 I have to fill the fluids in my expander with my breast reconstructive surgeon..anyway I hope no extremely fatigue as my previous chemo since i have my baby to take care so I need energy 😭
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I'm now on day 15 of cycle 2 and, I'm not having issues. This is treating me pretty much like my solo HP. If the next 12 cycles are like this I can totally handle it for the 10 months. 🤞🏻
The only real SE i have is the dry mouth and lack of appetite for 3-4 days. Food tastes fine I just don't have much of an appetite, which is actually a good thing.
I occasionally have the sniffles/drippy nose which comes and goes. I don't have constipation or fatigue. Today was my first Radiation so I expect the fatigue will change for cycle 3 and 4.
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So far so good on round 7. Am needing more sleep the last few days, but today I was quite alert all day even though I had to get up early. Energy is good, getting a lot of exercise. Appetite not great, constipation still a problem, and of course the thirst is ramping up again. Neuropathy a little worse but more tingling and light burning, did not disturb my sleep at all last night.
I still have pain clinic appointment next week that I will keep.
I do need to fit PT in again as my armpit and boob are getting tight despite the stretching I am doing.
Somehow getting halfway through now I am in a much better mood and much more optimistic!
How is everyone else doing?
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I got for cycle 3 on Monday. So far it's been really good. I have some very minor issues but, nothing major. I will probably have more fatigue with Cycle 3 and 4 since I just started radiation and these will overlap.
Minor neuropathy starting last week. I'm trying some treatments to see if I can get it to clear up.
I wake up a few mornings with a headache but, they're mild and usually clear up on their own.
I do lose my appetite, normally it's a few days after infusion it comes back and then I lose it again towards the end of the cycle. I'm not complaining about that because its helping me lose weight.
All in all it's not bad. I was quite scared of Kadcyla after TCHP but, I'm mostly doing well. We will see how the rest go.
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Had Cycle 6 last Tuesday. I am finding a wee bit more fatigue but overall feel great
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Cycle 10 last week! Overall doing well. Definitely super tired, if I don't nap during the day, by 7 pm I can barely move and have to just go lay down. Dry mouth - biotene. slight occasional pain in left knee; wondering if kadcyla or tamoxifen or start of arthritis (I turn 50 in two weeks!) . No real appetite issues. Some mild headaches . I feel positive.
Yeslama, I also made another PT appt. Due to stiffness/discomfort in chest area (and slight lymphoedema), despite exercises. I do find wearing the compression sleeve and doing self massage help.
I do have some trouble with sleep. I can't tell if it's new to tamoxifen (X2 months) or not. And more anxiety with COVID-19 and the plan for my kids to return to school in two weeks... falling asleep can be challenging th we days and I often wake at 4 or 5a.m. and have a hard time falling back asleep. Sometimes I take Ativan at that time and it may help. Hard to tell
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#3 today. Nothing new to report so far. I told them that if the neuropathy continues or gets worse I'm going to switch to 60 minute drop starting with #5. Sucks that I have to wait that long but, #3 and #4 coincide with Radiation and the appointments are so close that I just don't have time 😌
I had to stop the ALA because of Radiation so I'm doing Glutamine and B6 hopefully this will at least keep it in check.
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I finished 6 TCHP four weeks ago. I will have DMX on Tuesday, followed by Kadcyla or HP, depending on surgery pathology, and radiation, schedule undetermined.
I'm getting weekly acupuncture (offered at my cancer clinic) and taking ALA for neuropathy. I will ask about B6. I iced during taxotere, but by 5th infusion had fingertips and toes starting to ache or be numb, and by 6th infusion the discomfort and pain was pretty constant. Wasn't told to take 3 ALA pills a day, only one, which was just caught last week and upped to three a day - the healing effect is still slow.
Since Kadcyla is a combination of a chemo drug and Herceptin, my new Navigator suggested today that I might only do eight Kadcyla (instead of the generally prescribed 14) since I already have six Herceptin under my belt, as it were. I don't know what will happen yet.
I'm grateful to all who have posted here about their experience with Kadcyla, as it's completely new to me as of five days ago when my onc cancelled my HP infusion to wait for surgery pathology to make a decision. While initially shocked and very unhappy to have to face more Chemo, (as compared to HP/lower case “chemo") I am reassured it won't be the ball buster TCHP was, even with radiation stacked on top of it at some point. I'll follow this thread to see if icing would be beneficial - this neuropathy is no fun - as well as to get a better grip on other possibleSE's.
Thanks, Ladies, keep on keeping on!
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My WBC and ANC keep dropping apparently due to Kadcyla. I'm getting neupogen shots today and tomorrow to bring them up. It's not bad, I'm borderline but, I don't want to have to deal with getting too low or having a delay in treatment.
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mmorigan- that’s frustrating when your numbers go low. I hope the shots work.
I haven’t started Kadcyla yet, but when I was in for my HP infusion, I asked my chemo nurse about icing for neuropathy. She said not many do, but one women is. She said that if I already have the mitts and boots, she thinks it’s a good idea. So I’m going to plan on icing when I start.
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Hi Everyone,
I had my first infusion of Kadcyla yesterday. I was diagnosed 12 years ago with Mets to spine and liver. I was on xeloda; herceptin and perjeta for the last few years. Changed to Kadcyla due to neuropathy from perjeta. I’m looking forward to getting to know you. I definitely feel more tired today. Anything else I should expect?
Thanks
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i don't have many SEs a little neuropathy (glutamine is taking care of it), some mild headaches, loss of appetite (comes and goes). Mostly I feel fine, my WBC have been dropping (probably due to Kadcyla) so I got 2 neupogen shots this week and, I swear they are worse than the Kadcyla 😂
ETA: I got a slight fever yesterday, that also happened cycle 1 but, it only got up to 99.4 (same as first) and went down after I took Tylenol. Both times I noticed I started to get warm but when I checked the thermostat the house was cool, took my temp and it was 99 degrees.
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After 8 Kadcyla infusions I have developed drop foot. Anyone else?? My MO has had me go through a brain and spine scans and all clear there. Next week I will have an EMG to see if they can determine what is causing this but no more infusions until we get it figured out. Because muscle weakness is a side effect of Kadcyla he is suspecting that is what is causing it. I also have cramping in my lower calves and foot. Anyone else? I’m bummed to have to delay the treatments and was handling the side effects so well until this happened
Any insight would be great.
Thanks,
Julie
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I'm on Day 10 of Cycle 3. So far this is a very manageable treatment. I'm not really having any big SEs, mostly mild issues that are easily dealt with. My biggest issues is my WBC and ANC are low/borderline. My Dr gave me 2 shots of neupogen last week and my counts didn't go up at all by this week. I got another shot today and will get 1 more tomorrow. Hopefully, my counts go up by my next infusion on 9/8.0
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Anyone have any issues with their eyesight? I can’t decide if it’s the Kadcyla, the Tamoxifen, or just dryer eyes from allergies. I did read where you aren’t supposed to get an eye exam while on chemo because it affects your eyesight
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Really? I have one booked for September. I don't think I can wait until April0
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I had a eye exam because chemo caused extreme dry eye. However they did tell me not to change my prescription lenses during treatment. Supposed to wait until all the drug is out of your body.
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Hey all - just joining this group in anticipation of switching to Kadcyla. I finished up TCHP in July and had one HP infusion before my surgery this week. Had a DMX. Surgeon took 4 lymph nodes which came back clean in the OR biopsy, but they just called with the final pathology and they did find residual cells in one of them. I also had a miniscule amount of cells in my breast tissue in the tumor bed - less than 1% of the original site. On the pre-surgery ultrasound they could see nothing. So I'm assuming the MO will recommend Kadcyla? I'm a little nervous about some of the side effects that you are all experiencing. And the thought of 14 more infusions. Ugh.
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Hi Wahoo! Welcome. I would wait and see what your oncologist says, because it sounds like you had close to PCR. But none of us were thrilled at the change in plans and the thought of 14 more infusions!!!! It is a long road, but I am grateful this treatment is available.
I had my 8th infusion yesterday, so more than halfway done. I am actually an outlier in terms of severity of symptoms -- I had my infusion held for 8 weeks due to grade 4 neuropathy, which in the trial is a 1% thing. It took a while to get under control, but I really really really wanted to get the full 14 in. If it is recommended for you I would suspect that even if you do develop side effects even a few doses would go a long way. I had much less response to the TCHP, unfortunately, so really am counting on the kadcyla. I felt much more optimistic once I got that half-way infusion!
This is so much better than the TCHP. I had a really rough time with that. The dry mouth is hard to appreciate until you have experienced it -- tongue sticking to roof of mouth dry, but I have been able to manage it, even through too-long meetings requiring prolonged mask use and no drinking! I do have loss of appetite and need zofran a few days per cycle. And some weird upper back pain. But those are manageable. I have been able to exercise every day, work every day (except the time it takes for the infusions), pretty much live my life. I do want more sleep (and haven't been getting it -- that work and exercise thing getting in the way
). That is about it. Try not to think about it at all until you see your oncologist. Whatever is recommended, it will be ok.
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Hey wahoo!!
I know you are glad to have surgery behind. I had residual cancer (2m) left in my tumor bed so I was scheduled for 11 Kadcyla treatments (I got credit for 3 Herceptins between last chemo and surgery.)
I just had infusion 7 of 11 and have had very minimal SEs. This week, my vision became a little blurred but that could be due to extreme dry eye and allergies. Don’t fear Kadcyla. It’s nothing like TCHP. I wish you smooth sailing
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