Who's on Kadcyla/TDM1?
Comments
-
CMHA22 my first few months were miserable. The nausea was so bad that I had stopped eating for six weeks and lost a lot of weight. Anti-nausea meds didn't help at all. On top of that I had headaches, fevers, and chills so bad that I would shiver uncontrollably for hours despite being wrapped up in blankets with a heating pad. Then infusion #5 had very mild SEs and I finally felt more like myself. I think it just took my body a while to get used to it. It's the first treatment that has worked for me in 18+ months, and I envision the side effects as the chemo kicking cancer butt!
I have noticed my neuropathy getting noticeably worse,and I really don't want to increase my gabapentin dosage again, so I'm going to start icing my feet.
0 -
Hello everyone, can anyone share their experience with TDM1? I’m starting treatment soon and I have been reading posts but I’m looking for recent answers? Can you share some of the side effects and maybe if you used any alternative treatments while on it? Like supplements. I know about Gluthamine for neuropathy, but I’m interested in knowing your experiences. Thank upu
0 -
I was on Kadcyla for 4 years and it did a pretty good job with my chest node mets. In my 18 years of chemo I have never used alternative supplements, because I don't know of any of them that don't interfere with the efficacy of your chemo.
Use alternative supplements at your own risk.
0 -
Denny123
Thank you. May I ask about how you felt during those 4 years? I’m afraid I won’t have a good quality of life, I’ll be too tired, etc.
Also, 18 years of chemo. Wow, I don’t even know what to say to that. How are you doing?
Any advice for us entering this world now? It’s scary.
0 -
Roro11, I am used to being tired. I am now on Herceptin and Xeloda. Xeloda has its own set of SE's...very sore hands and feet.
I was okay on Kadcyla, mild nausea a lot, so I lived on buttered noodles and mashed potatoes. Terrible diet, to be sure, but I actually went on a brief NED even with that diet. I took a 9 month break of Kadcyla and went back on only Herceptin. But I shouldn't have taken that long off, since the 2 chest nodes returned.
During that 9 months I went back to a healthy diet, but the nodes grew rapidly. Which just shows me that it really didn't matter what I ate....the cancer isn't affected by food.
My worst problem with Kadcyla was the nose bleeds....try not to blow your nose much. Kadcyla thins the lining of the nasal passages and thus the capillaries are too close to the surface. If your nose bleeds, put a bit of Afrin on a Q-Tip and swab the inside of your nose to constrict the lining. I wish that I had known this before blowing out a big blood clot and ending up in the ER with a severe nose bleed. Had to get my nostrils packed for a week-UGH.
After I started with the Afrin tx, that was quite a difference.
When my nodes got too big, I had Foundation One testing that showed that my cancer properties had changed from Her2+++ to Her2-. So that is why Kadcyla stopped working.
0 -
On my second week delay on Kadcyla.cycle 4 finished. All going well until I picked up a virus and ended up in hospital. Dehydration from stomach virus and fever. How does icing help neuropathy and for how long ?
The neuropathy seems to get worse even now. I’m wondering if anyone took Glutamine for this. I continue to lose a lot of weight even though these last 2 weeks I’ve been eating. Lots of fatigue.
Haven’t had nosebleeds yet thank goodness. Runny nose annoying. ESP with tissue shortage🥴
Wishing you all well. Thanks for your input. It is very helpful. Take care
0 -
Maire-make sure to ask your onc if Glutamine is okay to take with Kadcyla. There are medical treatments available versus the questionable alternative ones.
0 -
Maire67 I'm so sorry that a virus landed you in the hospital. Are you home now and doing okay? That must have been terrifying.
Icing is supposed to help prevent/reduce neuropathy by constricting the blood vessels. It's the same principal as using an ice cap to prevent or minimize hair loss when doing a taxane. I waited too long to start icing on Kadcyla, my onc increased my gapapentin dosage again because my neuropathy was getting so bad. I tried to hold off, but one month after he wanted to increase dosage my neuropathy was so bad that I couldn't sleep. I think the neuropathy caused by Kadcyla is at least as bad as Taxol.
I haven't had any nosebleeds (I did on Herceptin), just the same drippy nose that I had on Herceptin, which of course makes sense since Kadcyla contains Herceptin.
My WBC dropped like a rock last month, and that's the first time I've had that problem since my Dx. Great timing with the coronavirus situation. It's been slowly increasing the past two weeks.
I strongly agree with Denny about supplements. I won't take anything without discussing with my oncologist first. He recommended B complex for neuropathy and said that it must contain B1, B6, and B12. I personally didn't see any difference after taking it for 6 months, so I stopped taking it.
We're pretty sure that Kadcyla already stopped working for me. A couple months ago my nodes started swelling again (I went on Kadcyla after developing mets in several dozen nodes throughout my body) and now my oncologist is fairly certain that I have bone marrow involvement because my hemoglobin is now dangerously high This is not the greatest time to have progression or issues with treatment. My MO has been self-isolated at home for two weeks now.
0 -
Thank you Denny. I’ll wait until Tues to ask my mo. I’m home LoriCa and feeling better thank you. Sorry that Kadcyla seems not to be working. At ER the frightening part was being in the ER for 12 hours with incoming covid patients. Some of the Er docs had it. I’m over 16 days after that. Lots of covid19 in my hospital then and now .God bless those nurses lpns docs and all the workers.
My white counts are not coming back so every week we wait until next week to see if they are coming up. I am tired but have nothing to complain about right now. Recent rads did a job on latest bone mets. I have myelodyspastic syndrome that doesn’t help my white count but I’ve had it for 14 years. Low white counts are the norm.
Thank you for your advice. I didn’t realize neuropathy was from Kadcyla. Just thought it was leftover from Taxotere. Take care everyone.
0 -
Maire67, I know some supplements don’t work while on chemo but for Kadcycla you can take 30 grams of naked Gluthamine that you can find off amazon to help you with neurphaty. It’s a powder for, comes in a big plastic jar for like $30. You can mix it with anything, just not hot water. Maybe juice or a yogurt. Please ask your oncologist about this but I have read studies as well as have been informed by an Onco nurse. Try to give this a try for a month to see if this relieves the pain, although you started treatment, this might help. Good luck
0 -
I’m having my first treatment today. Fingers-crossed that it isn’t any worse than Abraxane. Did anyone do Kadcyla at the same time as radiation? Did that combination make any difference in how you felt or your quality of life
0 -
Good luck cyathea, let us know how it goes. I don’t have any experience yet as I begin gamma knife then treatment in about 2 weeks, but I’m always curious to see everyone’s side effects. Sending you good vibes your way. Xx
0 -
Thanks for the good vibes, Roro11. Yesterday was fine. It just made me tired. Today, the fatigue continued and I felt a little “off”, not exactly nauseated though. This afternoon I have a mild headache and that’s very rare for me and surprising because I am still on extra strength Ibuprofen 4x a day due to swelling and nerve damage from my BMX. I’m hoping for a better day tomorrow, but I’m glad these SEs will be manageable
0 -
that’s good to hear, I’m glad cyathea. It is weird that you are experiencing headaches with such high dosage of ibuprofen. Although i am aware, headaches are a common side effect of this drug. Give it some time. I hope you have a great weekend and the fatigue isn’t terrible. Keep us posted
0 -
Haven't posted in a while because I developed polycythemia a couple months ago (my onc thinks it means bone marrow involvement since we can't pinpoint any other cause) and the symptoms from that have been no fun at all, not to mention it could cause a heart attack or stroke at a minute if we can't control it. The only way to control it is with phlebotomy, there is no cure.
But with regard to Kadcyla, something to be aware of - most of you probably know that Kadcyla works by directing the immune system to attack cancer cells and is a type of targeted immunotherapy. I have always run a low-grade fever a few days after my infusion but never worried because fevers are a known side-effect. Recently my fevers have been trending higher, and after my last two infusions I woke in the middle of the night with intense rigors and a fever of 101.7. I was able to bring the fever down with ibuprofen and an ice pack on my head and neck, but it was a miserable and frightening couple of hours before my fever came down. My onc thinks I'm heading toward a cytokine storm, the same thing that kills many COVID-19 patients when the immune system starts attacking healthy cells and tissue like lungs. Just had another infusion yesterday and we're going to see if we can head off the high fever, will know in a couple of days since it usually hits me Monday night/Tuesday morning. If we can't head it off I'll likely have to stop Kadcyla since my immune system is overreacting to it. So keep an eye on your fevers and if they start trending higher, be sure to tell your onc before they get as high as mine are. A cytokine storm is a very dangerous situation. On top of the other very dangerous situation of polycythemia I'm having tons of fun over here.
0 -
LoriCA- I might be in the same boat as you. Ai had a fever if 102 + gir 2 days several days after a treatment. We had me tested for Cirona since my husband is s as frontline healthcare worker but it was negative. Thank. You got the warning, as I attributed it to my treatment. I will be paying Attention the next time i am treated.
Thank you for the heads up.
0 -
LFF I really hope that is not the case for you and that your high fever was just a one-off. If it happens again please discuss with your onc if you haven't already. I knew mine wasn't neutropenic fever because my WBC had rebounded and were fine. I did briefly worry about COVID-19 because the rigors were so intense last time that I was having a hard time catching my breath (that really scared me), but once the rigors calmed down I had no problem breathing and I have no other symptoms. My fevers follow a regular pattern after my infusion so I was fairly certain it was due to Kadcyla and my onc agreed.
I know that it was formally logged as an Adverse Event. They spent time with me making sure they got all of the details right about how many days after infusion it occurs, how long it lasts, how I treated it, etc. as they were entering the report.
0 -
LoriCa, sorry to hear about it - on top you said earlier your oncologist thinks it stopped working for you ? Or has the oncologist changed his/her opinion about bone marrow involvement? How are all those lymph nodes and pain ?
It looks as if you were balancing on a tight rope above the abyss , with the difference that one could dream to get to another side of that rope and be safe while in our/your case it is just the rope , forever ...😕
You sound so calm and collected - hugs...
0 -
Anotherone it's been so confusing these past couple months! This is long, but this is what's happened over the past couple months since we thought Kadcyla had stopped working - My lymph nodes were acting up again but it was too early to scan. Then the tumor tangled in my brachial nerves started hurting again, but not enough to require pain meds. Since I've been resistant to so many treatments we don't rush to try a new one at the very first sign of progression now, we typically wait until it impacts my quality of life so I don't run out of options too soon, and that's kept my QoL good most of the time. HER2+ targeted meds haven't stopped my cancer or even kept me stable, they only slow down the growth. Then about once a year or sooner it takes off like wildfire again and spreads so fast it will make your head spin (my Ki67 is usually in the 70s, my MO told my husband he gave me 60 days max at my initial Dx if I didn't immediately respond to the first chemo we tried because it was growing so fast, just in one week), and then all scans/biopsies/tests are ordered STAT because we have to change treatments immediately and hope to find something that will slow it down again. That's always fun because sometimes even a chemo won't get it to slow down, which is why we tried frying it last year as a last resort. So we don't do monitoring scans every 3 months because that doesn't work for my situation. It's always growing, I haven't had a scan with no progression in over 2 years now (Jan 2018). It grows fast enough that I have obvious signs of it and the scan just confirms what we already knew. Right now Kadcyla is keeping it in check enough that even though we suspect it's still spreading, it isn't out of control like it has been so many times in the past. This is the best I've been able to hope for.
The day that my hemoglobin and hematocrit first went (dangerously) high, I had to come back the following week to see if it was just a lab error. That's when I found out that my MO was isolated at home and undergoing testing. It wasn't the coronavirus or anything else contagious, but he was very ill and out for weeks while they kept running tests, and when he did return it was only part-time at first. Since my Hgb and Hct were again high, I had to come back every week to have it monitored, and since polycythemia could kill me instantly, that became the priority in my treatment. After a few weeks of it staying high I was supposed to start phlebotomy, but that day my numbers started to fall and we waited to see if it would self-correct. Two weeks later it was almost normal and no longer dangerous, so we went back to labs every 3 weeks before my infusion. When I had labs done last week, it was again dangerously high. But it was also the first time I had a full consult with my MO when he was feeling well, and when I told him about the fever issue that turned into another thing that could kill me and become our 2nd top priority. It actually bumped the polycythemia down to 2nd in line. Anyway, phlebotomy will be a regular part of my treatment anytime those numbers go high, but now we have to deal with this newest issue first and it can't be scheduled around my infusion because we can't take a chance on me being anemic for my infusion. So it's all a balancing act.
So first we need to get these two things that could kill me immediately under control before we even talk about getting a PET/CT scan and discussing what treatment we might want to try next. I was supposed to wait until the coronavirus situation calmed down before getting my next echo (I'm in a hotspot and my LEVF has been staying strong), but since a cytokine storm could damage heart tissue I now have to get one before my next infusion.
Besides being very dangerous, these two situations are causing me more issues than the cancer right now. Between the fever and rigors from the immune response, and the polycythemia causing daily headaches that are often worse than a migraine, spontaneous bleeding issues that take over an hour to stop, memory loss, sluggishness, and fatigue, I've been pretty miserable for about two months now. Even on a "good" day I feel like I'm swimming under water in dark murky water, I can't think straight and it's hard to concentrate. But at least I finally got myself to stop worrying that I'm going to drop dead of a heart attack or stroke at any minute. I have to take daily aspirin to hopefully ward that off, but since Kadcyla causes bleeding issues, polycythemia causes bleeding issues, aspirin can cause bleeding issues, and the ibuprofen I was taking for the headaches can cause bleeding issues, SURPRISE! I started having bleeding issues. So I cut my aspirin dosage in half, switched back to Tylenol even though it does nothing for the headaches, and hopefully I won't have any more bleeding issues. BUT now I'm supposed to start taking a combination of Tylenol AND ibuprofen at regular intervals a couple days before I usually have the fever spike to see if that will ward it off, and I'm concerned that the ibuprofen may once again lead to bleeding issues. The balancing act is getting stressful.
Calm and collected? Maybe. After more than two years of steady progression and multiple treatment failures, I've just had to come to terms with the fact that it's not going to be easy for me. If I freaked every time I had a problem or progression I'd be freaked out all the time haha! I'm not happy about it, it feels a bit like my body is trying it's best to kill me right now but my organs are still doing okay, no progression in my liver. I just have to roll with things and do what I can to try to take the best care of myself. The only time I get really depressed is when my cancer starts spreading like wildfire again and the next treatment or two fails right off the bat.
Thanks for the hugs! Hope that wasn't TL:DR
0 -
I suppose after being told one has about 6 weeks not much can get worse. 😧
Of course it was not.. update us on how the fever goes next week. 😕
Hope you have something nice in your life now amidst all this chaos 🧘♂️💃👫🍰()
0 -
Yes I have many good things in my life. Despite all this chaos I really can't complain. My husband is very supportive and takes good care of me. He works in an "essential" industry and is still working and making money (he's self-employed) so no worries about money yet unless the economy crashes. I love my medical team. I've added to my vegetable garden (all in pots because my yard is hardscaped) and have been spending time tending it and watching things grow. I love sitting in my yard and watching my hummingbirds and the weather is beautiful here. Life is good.
0 -
LoriCA you have not had an easy road, but thank you for sharing so many of the details. It is helpful for me and others to know that we can meet these or other challenges with grace. I’m so happy that you have good things in your life to ease the journey and that your QoL is good. Even your gardening is an encouragement. I have a bit of a green thumb myself but lately I’ve found that I’ve lost interest in caring for my plants. My DH has taken up the watering duties, but I think I should take them back. I think it is good for one’s soul to take care of living things.
My low grade fever persisted so I went to an urgent care and found out that I had an infection in my surgery wound. Several doctors had looked at the wound and thought that it was fine. I had been treating it with Bacitracin ointment. Thetype of bacteria that was causing the infection was definitely the result of surgery and not something you get at home. An antibiotic should take care of that and I should be healthy again for my second Kadcyla treatment on Thursday.
0 -
cyathea- I am glad you got your answer and that you will feel better soon.
0 -
cyathea I agree that it is good for the soul. There is so much joy in watching things come to life. But I've gone through periods when I wasn't up to it either, so I understand. I hope you feel up to getting back to it.
I'm glad you got an answer about your fevers. An infection is never a good thing, but probably easier to handle than having your immune system overreact to chemo. I hope the antiobiotics clear it up quickly!
0 -
ok this is going to be a weird question. does anyone else feel slightly achy or fluish 2 weeks out from infusion?
I fell like I'm in a body that isn't mint. My temperature is just under having a fever level but boy am I tired and have very little stamina.
It could just be 10 years of systemic chemo catching up to me, recovery from cyber knife and infusion in same week, or it could be the kadcyla and how it makes me feel.
Honestly I felt better on weekly taxol.
Just wondering.
Thanks0 -
I was on Kadcyla for 4 years, and always had the extreme fatigue. And my nurses told me the fatigue was also the result of my have had chemo since 2003. I have been off Kadcyla for 2 1/2 years, and still have the fatigue. But now it is probably from my Xeloda.
0 -
leftfootforward I also felt better on weekly Abraxane. I’m only on my second Kadcyla treatment so I don’t have much experience yet. I didn’t have the low grade fever, headaches or nausea with Abraxane. I had body aches, but with Kadcyla they seem to be worse and last longer.
I felt OK on the afternoon of treatment, but I was tired. The next day was a little worse but I still worked and went to PT. Then WAM I didn’t want to get out of bed.
Today is day 5 (with day 1 being treatment day). I don’t have the low grade fever yet, but my muscles and joints feel like I ran a marathon (not that I’ve ever actually run the far...but what I imagine it would feel like LOL)
0 -
I’m no longer on Kadcyla but I was on it for a couple of years. I’ve had fatigue and headaches on all my treatments to some extent but what I did find made a big difference for me while on Kadcyla was dropping my premed. Not everyone probably even has a premed and mine was prescribed and administered without any discussion about whether I needed it. I believe it was compazine and after I dropped it, I had fewer headaches, less fatigue and still minimal nausea - nothing that an over the counter stomach aid couldn’t handle. Anyway, sans compazine, I felt better all around. If you have nausea, you may need a premed but if not, and you are getting something maybe try it without, you might feel better. M
0 -
I also have a tumor surrounding my brachial plexus nerves, it has shrunk and come back a few times, it has been extremely painful at times requiring pain meds. My onc does not seem worried about it as he says my cancer is staying in my right upper quadrant and not spreading to other organs. So I try to focus on that, though I’ve had to change treatments several times and I’ve lost the use of my Rt hand due to the tumor and rads causing nerve damage. Had a Pet scan last week showing tumor growth and waiting to see if my treatment changes
0 -
It's been a while since I've updated because I've been having a really tough time. After my last post we were able to successfully minimize the fever I had been experiencing 5 days after an infusion (for two cycles it never got higher than 95F) and I thought I was in the clear, but then I again started having problems with bleeding from my nose and petichiae on my forearms and a headache that was a million times worse than a migraine. I didn't think too much about it since I know that Kadcyla can cause bleeding and headaches, and so can the polycythmia that I developed due to bone marrow involvement, so I begged for help with the headache. My MO prescribed pain meds for me to use after my next infusion but they didn't even put a dent in the pain. I was out cold for 4.5 days straight. I would get up to use the bathroom and drink some fluids, but as hard as I tried to stay awake I was out cold within minutes again. I can't even describe how bad the pain was. Took me a week just to recover from the headache because my body was so worn out. My QoL was horrible. I asked my MO if we could try a different class of pain killers for the headaches. Instead he postponed my next infusion until I had a brain MRI to rule out brain mets. When he got the results back he gave me the name/number for a neurosurgeon and told me my treatment was postponed until I consulted with him. The MRI report only mentioned "vascular abnormality" (and no brain mets).
Turns out the brutal headaches were because I was bleeding in my brain, a cerebral hemorrhage stroke. I'm off all treatment while I work with the neurosurgeon, he's ordered more brain scans (angiogram and venogram) and we'll try figure out what to do from there. Keeping my fingers crossed that they won't need to cut my skull open to repair damaged veins; hopefully if it comes to that it's something that can be handled with radiosurgery.
Finally felt up to doing a little research and I learned that in all of the TDM-1 trials (TH3RESA, KAMILLA, EMILIA, etc) there were several incidents of brain hemorrhages and hemorrhagic stroke, including a few Grade 5 (fatal). It's not common, but it has happened in the trials. I got lucky that mine was "only" Grade 4 and it didn't kill me, but my neurosurgeon made it quite clear that I had a stroke (or multiple strokes based on the number of times I had that debilitating headache that knocked me out for several days). I'm also lucky that the damaged area of my brain affects visual/spatial functioning and not an area that affects cognitive functioning.
Haven't discussed a treatment change with my MO yet because we're waiting to see if there's any damage to the veins/arteries in my brain so we know how to proceed. Taking care of my brain has taken priority over everything else for now. Kadcyla didn't stop my cancer from growing (neither has anything else we've tried so far) but it's done the best job slowing it down so far. Disappointing because it really wasn't a bad treatment as far as QoL at least until my brain started bleeding!
0
