Kadcyla for residual disease after neo adjuvant chemo
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Hi Sarah! How are you? I sadly caught covid since the last time I posted. It wasn't really that bad for me, but I am delayed from my next Kadcyla. That worries me more than covid actually, but there is nothing I can do. I dodged covid for sooooo long, it is so frustrating. It takes not being able to get treatment to realize how much you really want it.
On the bright side, my liver values continue to get better. The result from my last blood work was 34 AST (down from 40) 27 ALT (down from 38). My bilirubin also went down from from 15 to 10 (the onco told me she also looks at this number) . So hopefully, I can get my next kadcyla next week.
I went in for a second opinion after my surgery, and the oncologist I spoke to recommended Nerlynx for 1 year. He said there are some unpleasant side effects (diarrhea being the worst), but he said I should do it. My current oncologist hasn't mentioned it to me yet. She is more focused on endocrine therapy at the moment, and just started me on tamoxifen.
I hope #10 goes well for you. Double digits already! Getting closer to the finish line. Way to go.
Did you go get yr hair done? Mine is a bit weird now, I have been going for this pixie cut look, but like yours, the bottom is getting long and it's just all over the place. I just don't want to cut it. I don't know what to do so I do nothing. hahaahah
All the best! Have a great weekend.
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Hi noodlesg,
I had a vacation and feel so relaxed. Now I remember you told me you had a vacation too, this was so much needed. Feel like a new person. Of course vacation and hair dresser I went right before vacation played a role too. He cut my hair in a way that it looks like a hair cut now, not like some hair growing from my head, if you know what I mean. Once that looked half way decent, my self confidence came back because I can go out without putting on a hat and worry about how terrible it looks if I have to take it off. I hope yours grew enough so you can get a hair cut too :-) Much recommended.
I had a check up on Monday, mammo/ultrasound etc, all look normal for now, phew. I have the 11th Kadcyla tomorrow and liver values continue to sink, made it to 62 AST and 42 ALT (down from 71 and 54 respectively). And that when I drank 2 times 1 small glass of wine with dinner and of course once Limoncello which was offer the house
I thought I could let it go a little during vacation!I asked Nerlynx to my onc/gyn who is the director of the breast center and he said that it made no difference in survival rates, it only delays the reoccurrence but if it comes back, it is observed to be more aggressive so one has the same time to live if that happens. So I guess that is a no for me. I read in another (German language) forum that some doctors explained that Nerlynx is also hard on the liver, like Kadcyla so if it reoccurs, it limits your options (Entertu for example is a good drug but it is better if your liver is in a good shape to take it). Try to ask all these questions before deciding on Nerlynx.
Hope you are doing well, how is Tamoxifen? Hope Covid was gentle on you. You resumed your treatment?
Wish you a wonderful weekend too.
Sarah
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Hi Sarah,
So glad to hear that you went on vacation! And the haircut, too! My family and I have been doing our fair share of revenge travel, and it feels great. Plus, now that I have caught covid, I'm not so nervous about catching it anymore. Thankfully my neutrophils have held in the normal range during kadcyla. To be honest, my covid symptoms were quite mild, but I was given a course of the anti-viral paxlovid pills.
I still feel like I need to wait a bit longer for the haircut. It's still at such an awkward stage, and I style it with gel to look like a short pixie. It's starting to get a bit to long for the gel to hold on top, so I have been looking for hair bands. I think I'm about 2-3 cycles behind you, so maybe in a month's time!
I was wondering if I can ask you a few questions please. I'm so glad that both our liver values have improved, and have maintained at an almost normal level. It seems kind of like we found a way to solve the problem together! However, when I did my last blood work, I noticed a trend that my platelets and red blood start starting to drop. They are both still in the normal range (platelet is 266, but it started at 357) and red blood count is 4.02 mil/uL (started at 4.84). I was wondering if yours were the same? If so, have you taken any vitamins made any changes to your diet to improve the numbers?
A couple of months ago, I had a follow-up mammogram and ultrasound. My doctors mentioned a PET scan in the future, and I never realized that this was normal protocol. I always thought it was done if you had symptoms of mets. I was wondering if this was also the standard protocol at the place where you are being treated?
Hope all is well with you. Sending lots and lots of positivity your way. Chat soon
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Dear noodlesg,
I am glad to hear you are travelling and having quality family time. I haven't caught Covid yet and dreading it, you were lucky to have it mild. Some colleagues caught it 2 weeks ago and they are still struggling with it.
As for hair cut, the hair dresser didn't cut mine everywhere but only where it was too long and didn't look good. Now mine grew a bit longer but still slower than normal. I started Kadcyla at the end of February, in 8 months it would have normally grown twice as much but since it is looking somehow normal now, I don't mind anymore so much.
My thrombocytes are also slowly creeping down. I started with about 270-280, went down all the way to 120, then after holiday, less stress and a lot of fish I suppose, went up to 170. This week they measured 140. As long as it is above 100, they say they don't delay the therapy. I do however can feel the difference, especially when I cut my hand, it takes forever to stop. Also little nose bleeds because of dry nose takes much longer to stop. Moreover 2 weeks ago I had my period that was rather liquid too (lost a lot of blood). Your values now being about 250 doesn't sound too bad. what is the lowest point they get alarmed? I had been thinking it this way, sometimes during chemo they give pills'/shots to make sure the patient doesn't get a blood clot from the port. So maybe it isn't too bad after all, assuming you also have a port. I think beet root juice should help a bit with platelets too, you are still drinking it? I drink 2-3 times 330ml last week before Kadcyla before blood test. Fatty fish, which I found to be helpful is something you can try as well.
My red blood count is on the lower end of the healthy spectrum but i don't mind it too much either. When it gets too low I can feel it, I get cold fingertips easily. Right now I am managing it. Today it was my 12th treatment, so I guess I will be able to get it 2 more times with how the values look right now. Creatinine is another value that is low for me, today I asked, the doctor said it is better low than high. I just checked though, it might indicate liver problem. I will try not to get too worried and roll with it, it is so close to the lower end of normal range.
As for PT Scan, they don't do it here unless there is an indication of recurrence. The scan would stress me a lot but after that you feel much better. I had once a PET scan after Hodgkin treatment, about 12 years ago, that was a point when doctor said it looked good and we removed the port so it was like a clean page after that if that makes sense. If you aren't scanned, there is always that "what if" at the back of your mind. So perhaps it isn't too bad after all. Will you be keeping the port longer? Do you also go to a rehabilitation at the end of the treatment? I signed up for a 3 week program here, starting from 12th December, not sure what to expect.
Lots of love, cheers, Sarah
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Hi Sarah,
How are you? Thanks for your sharing your stats. I get so hung up on numbers sometimes, and I think even my doctor tells me that I worry too much and to just take a day at a time. She said she didn't anticipate that my platelet count will be an issue, but did say 100 was the threshold. I do have a port, so happy I decided to get it, despite not wanting it in the beginning. I still drink the beetroot juice, I'm starting to not like the taste, but my liver numbers have been so good that I will force myself to continue.
How are you feeling after #12? Are you excited to finish the treatment? I get #10 soon, and I go from being happy the treatment is almost complete to being anxious about what will happen after. My onco has never mentioned any rehabilitation program for me, I don't think we do it here. Curious to know what it is
I am triple positive, so I will still need to continue hormone therapy for what feels like an eternity. I totally agree with you about the scans, I just anticipate a lot of anxiety and stress. I'm sure afterwards I will be happy to have it done, it's just getting there. My onco did say that the port was to be removed after we are finished with kadcyla, but I was hugely disappointed when I heard that I needed more infusions post surgery, so I tell myself not to think about it for now.
Good luck on your last 2 kadcyla! Sending hugs your way.
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Dear noodlesg,
I feel fine after 13th infusion last Friday, one more to go for me on the 25th of November. That will be the last one, I will bake almond choco muffins and invited my psycho-oncologist to come and eat with us. I hope that day won't be too hectic in chemo station, sometimes a patient might have a problem and all doctors and nurses then start running around.
As for the last cycle now, thrombocytes are 145, liver values are 43-58, I am glad I made it so far without any major problems. The worst I have right now is nose bleed, which is a little annoying but nothing too bad. Hemoglobin is at 11 when normal range start at 12, but it is due to the last heavy period, it has to do with the lower than usual thrombocyte situation together with not having it for almost 1 year, they say it might regulate in time, crossing fingers.
I will then have an end of treatment appointment with my gyn onc who is also my surgeon. So many things to ask. I know he will be checking me each 3 months with ultrasound but not sure what to do with port or when to get a reconstruction. I am lopsided now with one breast and not sure if I am in for another major surgery. He is a really good doctor and encourages me to have a positive outlook on things, tells me the chances that this comes back is low and I shouldn't be too worries until it is necessary, I'll take his word for it.
Rehabilitation or "end of treatment treatment" is standard in Germany. It takes 3 weeks, you stay in a clinic with people who had similar health problems. They offer psychological and physical treatment depending on your needs, mostly a lot of sport and getting over things to start new. I was very sceptical at first but I will try and hope it does me some good.
You will be on hormone therapy, which is extra medication of course but then think about it as something which lowers the chance of it coming back. You might feel like you are more protected as opposed to me, who will have nothing.
I feel like soon I will be finished and they will expect me to return to normal like a switch but it might take much longer to get my life on track. Just looking around the flat, everything is everywhere, things on top of things, I need to start somewhere to get things in order. My inner image is very close to how my flat looks if that makes sense. I delayed so many thoughts and things I needed to do for such a long time, just to focus on finishing the treatment and now I don't know where to start.
One step at a time is the right approach I believe, or a day at a time like your doctor said.
Do let me know how you are doing, you are so close to the finish line too.
Hugs and best wishes
Sarah
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I had my 3rd Kadcyla infusion this week and so far it is going well. My bloodwork is excellent and the only side effects I am having are mild constipation and heartburn. I know it's early days yet but I'm optimistic.
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Hi Maggie, hope you are doing well.
I think the lack of posts in this thread shows that Kadcyla side effects are rather mild and rare.
Drink some beet root juice if your liver values slowly go up. Me and noodle found it to be helpful. I also apply a warm patch on liver from time to time, it is known to help with the enzymes.
Many hugs
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Hi Maggiehopley, good to hear that all is going well for you. Hope it continues that way. I have a little bit of tummy issues, too. Some days it gets a bit old, but most days am just grateful it's not worse.
Hi Sarah,
All the very best for the 25th. I wish I was there to celebrate with you, the muffins sound yummy
My next one will be #12, so I can see the finish line now. Thanks for the heads-up about the nose bleed, I haven't had it on kadcyla, definitely on Taxol and AC. My latest platelets was 214, so still coming down but still in the normal range. I hope it holds. The nosebleeds can be so scary. I'm doing okay. Just looking forward to the holidays. My onco wants me to have a neulasta jab because I will be travelling at the end of the year and my WBC, although in normal range, is slowly coming down. She's afraid I would catch something. I get a bit of brain fog here and there as well, but nobody seems too concerned, or rather, there is nothing you can do about it? Also, I am almost ready to pick up the phone to call my stylist for a haircut!
I had a reconstruction at the same time as my mastectomy. I chose the have the DIEP flap, where they take fat from your tummy and move to the chest. I wanted to do it all at once and not have to go under the knife again. The surgeons warned me that I will have numbness but on top of that, I have fat necrosis, which I will probably have removed after I am done with kadcyla. So be vigilant when you are talking to the plastic surgeon and ask a lot of questions. Sometimes the doctors don't tell you everything!
The 'end of treatment' is lovely, I wish we had that as well. The social emotional can be so hard, how lovely to see that support.
Take care! Come check in on us after you're done. Thanks for all the support you've given me, it means a lot.
Hugs
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Hi All, it looks like im due to start Kadcyla for residual disease.
For those of you who are also HR+ were you able to take tamoxifen alongside Kadcyla? Or did you have to wait until afterwards to begin hormone treatment?
Thanks
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I started Tamoxifen after my 2nd Kadcyla Cycle. I also did Radiation at the same time as Kadcyla
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Thank you Morrigan, did you find having Kadcyla and radiotherapy at the same time manageable? Have
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Yes, I had 2 Kadcycles during my 25 Radiation sessions and it was fine. I was a little extra tired the weeks where I had both at the same time but, nothing more than that
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I'm taking anastozole (Arimidex) rather than tamoxifen and I also started it after my second Kadcyla. I just had Kadcyla #12 and have had no problems. I did not do radiation.
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Thank you both for confirming. Im struggling to get a firm plan from my oncologist but think im getting there.
Can i ask if anyone on here had positive Lymphnodes after chemo, I'm really struggling to feel optimistic after my pathology report. Many
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Kadcyla #14 was yesterday. I am finished! I imagine it will take some time for my bloodwork/fatigue/gastrointestinal issues to go back to normal but that's okay. It will be weird not seeing my MO for 3 months, but I go back to work in August after a 15-month leave of absence. Yay!
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Congratulations on completing Kadcyla
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I had 2 positive nodes from 15-16 they picked up. My surgery was 2022 February, finished Kadcyla November last year. So far so good. My onc assured Kadcyla was a great drug to take care of any rest if anything left. Stay positive <3
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Hi all, this thread discussion has come to a halt i guess but i wanted to join and share some of my views on kadcyla.
I was taking kadcyla well for the first 5 and 6 sessions out of 14 but then slowly i started getting terrible muscle cramps and dry eyes apart from the other common side effects. I just had 9th session last week and now i feel like i'm beat. I'm starting to get scared... will i be able to finish all of my 14 sessions? The 9th dose was so rough on me. I have noticed that not many people mention muscle cramps and dry eyes at night.
My blood levels are always down after every dose so i take a pill to bring back platelets level and have 2 neupogen injection after every kadcyla because my wbc level plummetes like anything. I never had side effects from neupogen before but now i get these terrible back aches with it and i am barely able to tolerate. I also still get flu and infection despite the injection which makes me wonder, is the terrible backache worth it at all? Should i stop taking the injection? Because it doesnt seem to do any good.
My heart rate is also always up although the ECHO im suppose to have with kadcyla suggests heart health to be alright with mild tachycardia. But i dont think its mild. Its so loud in my ears, esp at night.
My liver enzymes used to be fine but they are also showing as high and im taking a medicine for that.
I really want to finish this treatment but i feel like that if cancer doesnt kill me, chemo will.
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Hi momofquackytoddler
My blood work dropped on Kadcyla starting around cycle 6 or 7, they tried giving me neupogen shots but, they did nothing so I told them let's go back to neulasta and that helped.
My echo dropped once but it was around cycle 11 and, my Oncologist decided to continue and do another echo in 2 months at which point it was back to normal.
I never had dry eyes but, I did have dry mouth, always needed to keep a drink nearby. I also never had muscle cramps except for my shoulders but, I always considered that more joint issues. During my cycles I would lose the ability to raise my arms over my head and, then it would get better until the next cycle.
I'm sorry you're having a hard time if it's too difficult maybe see if they can reduce the dose?
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Hi Momofquackytoddler- I did 14 rounds of Kadcyla from Oct. '22 til July '23. I had terrible muscle cramps in my back whenever I tried to reach upwards for something- like cry-out-in-pain Charley Horse type cramps. I'm still nervous about lifting my arms, even though that's resolved now. I also had less painful muscle cramps in the arches of my feet during the night. I still have those sometimes. My liver enzymes were somewhat elevated but I was never given medication for that and they are normal now. My platelets were low and they have never recovered- still low. I'm not on medication for that, either, though. My WBC was always okay. My other big side effect was constipation. The fatigue by the end was awful; I definitely felt like I had been beat, but I made it! I hope you do, too.
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Hi morrigan2575 Hello maggiehopley!
Congrats on completing kadcyla!
And thanks for replying. My MO has stopped my dose temporarily because ive developed terrible cellulitis on skin due to low immunity which needs to be treated promptly before i can resume kadcyla. I wonder if that will affect the effectiveness of it as there will be a delay in my treatment.
Well, i am beat. This is so tough.
XOXO.
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I am only on my 2nd kadcyla. SE I got from the get go - both my legs are sore/achy especially both at the back of my knee. I feel like an 80 yr old when I stand up and walk. And my nails are looking weird and the nail bed and eponychium are feeling weak brittle especially the eponychium tends to be injured easily. Also after I woke up from sleep both my hands are numb.
So far that is my only SE. I am considering stopping it, I don't even know if I need it. Before surgery I am Er+ Pr- Her2+ Then my pathology AFTER surgery became Er+ Pr+ Her2-
But my onco STILL gave me kadcyla. I told her that according to my research if you are HER2- treating it with ANY trastuzumab will do NOTHING. Her explanation is that since my treatment started with HER2+ meds that they are still treating my cancer like her2+ she even linked study articles about it. I read it, but I don't even know anymore. I am starting radiation on Monday and I want to tell my onco I want to stop kadcyla treatment and even her plan for me to start hormone treatment after radiation.
I am leaning on just doing radiation and stop all treatments after that. Cancer is scary but cancer treatment SEs are SCARIER. Ugh. Honestly if kadcyla gives me infection like it did in my BRUTAL 6 chemo sessions, there is NOTHING that will make me continue kadcyla treatment. MY infection experience from my chemo is hell on earth.
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At least part of your tumor was HER2+ and you had residual disease after Chemo so I would suggest you remain on HER2+ treatment for the year. If the Kadcyla SE are too much i believe they can reduce the dose and, if that doesn't help you can switch back to Herceptin.
I wouldn't abandon HER2+ treatments entirely since it's a very aggressive disease. Ultimately it's your decision but, I would go with your doctor's recommendation especially if they had studies to back it up. You can always request a second opinion or ask that they take it to the tumor board.
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Ya, even before my surgery my onco already told me my treatment will change depending on my pathology result, I believe I will be on kadcyla for only a year. She did say they can reduce the dose based on my blood work. My blood work was ALL normal before my chemo and it went wack on my very first chemo treatment. My glucose went up from the get go and stayed up, up to now. MY kidney numbers went down and I got alarmed, fortunately it went back to normal. Now it's my liver numbers that are all high and I told my onco that I am very concerned about it. She said that's one of the SEs of kadcyla and will lower the dose if it gets alarming.
What's weird is she does not give me ANYTHING on any of alarming results on my blood work. wow.
What about hormone therapy? Do I really need that? I just want all this to end but cancer is just a PITA that you deal with for the rest of your life, unfortunately.
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