Kadcyla for residual disease after neo adjuvant chemo
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YeslamaDragon - thanks! I suffered through some dry mouth with TCHP, so I'm familiar with that! Trying not to think about "what if" until I meet with the surgeon on Wednesday and the MO Friday.
AngieB92 - thanks for your input too!
Kris
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Greetings fellow Kadcycla Warriors!
Well, it has been 10 months since I originally posted to this string, and that was at the beginning. Today marks THE LAST TREATMENT OF THE FOURTEEN CYCLES!!! #14!!!!! As I have been reading the posts and responses to this group, it has struck me that we don't see too many celebrating the completion of this treatment. I wanted to post to share that "you can do this!" However I do have a couple of findings as I navigated these past 10 months. First, let me share that I was only on Kadcycla and no other treatment protocols. I acknowledge this is different than most, and overall I have been blessed with a manageable treatment. Here are nuggets I will share about my experience:
- The fatigue and side effects do get progressively worse as you increase in cycles. Take care of yourself, rest and be patient. You can get through this.
- My liver had to be watched during cycles #11-14, which sometimes meant we went 4weeks between rounds. Baby your liver early and keep it strong, it is processing a lot for a long period of time.
- Side effects were like clockwork and predictable. Fatigue days 4-10, then felt pretty good. Nausea days 2-5. Used my arsenal of meds. Small Pimples/rash around my nose and mouth days 10-20. Large muscle aches in the legs days 14-21.
- Walking, lots of water and clean eating helped manage the side effects. Tried not to take pain meds.
Now to some fun lack of side effects:
- My hair has been growing back. Curly and thick. Have had regular haircuts as we try to grow everything out.
- I did not experience loss of taste or any mouth sores.
- I did not experience neuropathy in my extremities.
- I was able to continue to work full time with only a few long weekends to rest during the last two cycles.
I know that this journey is not easy and I remember sitting in Panera crying my eyes out with my mom wondering if I could do another 14 rounds of chemo. It felt so overwhelming. As I sit here I am filled with hope that this treatment will be successful and I will live a long cancer-free life. It is also my wish for each of you. Stay strong fellow Kadcycla Warriors!!!
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Congratulations, MKEMom!!!! I can’t imagine how overjoyed you are knowing you are done!! Keep moving forward!! Thanks for the info about your dealings with Kadcyla. I only have to have 11 because I got credit for 3 Herceptins. I have 8 of 11 a week from Friday. I am on Tamoxifen at the same time and have been blessed that both are very manageable. However, I wouldn’t have thought about the liver deal so I will pay close attention that that
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Congratulations, MKEMom!
I just had #4 this morning. So far, so good. I don't have Nausea or any real SEs. I got a nose bleed during Cycle 1 and 3 but, not during #2. The nose bleed was pretty bad but, it was only once each cycle.
I have some minor joint pain, nothing really bad, most times I don't notice it.
So far the biggest issue is my WBC/ANC being low. My Platelet ms are fine but my ANC is 1.0. I did 4 shots of neupogen after cycle 3, we're going to try Neulasta this cycle to see if that makes a difference.0 -
Congrats MKE and thank you for sharing. I just got word that I officially start Kadcyla for 14 rounds on Sept 30, and I am inspired by your success. I will be starting after my 6 chemo rounds plus 5 HP only rounds, so I am at the point of being a little overwhelmed at how much longer this will all go. You give me lots of hope.
AngieB92 - I’m glad to hear your side effects aren’t too bad and you are almost done!
mmorigan - yikes about the nosebleeds, that would bother me I get crusty nosebleeds all the time, but never big gushers. You’re a rockstar going through everything.
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Congratulations MKE Mom and thank you for the inspiration!
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Awesome, MKEMom! Congrats on finishing. I met with my MO on Friday and I will be staying the course with H/P. No Kadcyla. My response to TCHP was "as close to complete as you can get" according to him, so he feels that we should stick with what is definitely working. He passed my information around to all his partners for review and they were all 100% in agreement. I'm glad - now that I'm done with chemo and have gotten through my BMX, the side effects with "just" H/P are minimal, short, and manageable.
Kris
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Congratulations mkemom! I am all for being celebratory!! Finishing 14 extra rounds of chemo is huge.
I finished 11 last week. 3 more to go. I cannot believe it. My Side effects have been minimal and manageable. Proactive : napping when I can, walking daily, drinking lots of water .
My current issue is lymphoedema. So mentally disturbing for me.
Also working on decision to have (single) reconstruction or not, but I guess that is a different forum...
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congratulations mkemom! I too got done with 14 of my Kadcyla infusions last 09/11 - was also taking Tamoxifen but after a year without periods, my MO has switched me to anastrozole - we’ll see how I do on that 😊 - the side effects on kadcyla has been manageable - mostly body aches - which could be the tamoxifen, some nausea, got constipated right after infusions, starting infusion #9-14 - my wbc was stable - At the very start I did have a spike in my liver enzymes but that normalized once my MO adjusted the dose - My MO will also start me on nerlynx in 4 weeks - we talked about it and he said it depends on how motivated I am - well, I’m plenty motivated - might stop it if it makes me run to the bathroom 😊 I hope everyone is doing well
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HI Everyone,
I hope everyone is doing as well as can be expected in this crazy year!
I have a question. I am now 9 infusions down, 5 to go. Has any one else had really intense muscle cramps? I have ones that make me scream and nearly drop me, but they release pretty easily usually. My electrolytes have been good, and with the constant thirst I am staying well hydrated!
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YesIAm...I had a huge leg cramp after my 8th infusion a week ago. I have noticed I get cramps in my upper arms but thought it was because my muscles have atrophied a little due to limitations on lifting from my double mastectomy and reconstruction. I have upped my fluid intake hoping it will help
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i got foot cramps during cycle 1. I looked and Kadcyla can drop your potassium. I started drinking apple juice and haven't had them again
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hi all - regarding muscle cramps, I’ve had them in my feet and legs through my 10 ( yay, I’ve made it this far!) Kadcyla treatments. I have been drinking a magnesium drink called Calm and that has really helped. It comes in a powder, that you mix with water. It’s also helped with constipation too. And like others mentioned - lots of walking and water.
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Thanks for this thread! I am 60 years old, and was diagnosed with stage 2 ER/PR–/HER+ back in April. I did 6 rounds of TCHP and am now recovering from my double mast. Just when I thought I was in the clear, found out there were apparently some residual cancer cells remaining around the tumor site after the surgery (thankfully, none in my lymph nodes), and they are going to add Kadcyla to the Herceptin infusions I'll be getting through April. I'm relieved to learn that fatigue and nausea seem to be the most common side effects. Thankfully, my doc already loaded me up with anti-nausea meds from my chemo.
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They're replacing Herceptin with Kadcyla. There's no protocol to give both, since Kadcyla is Herceptin+Chemo.
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I've been having a bit of a rough go of it, but I thought I would share a bit of breast-cancer humor I just found:
http://gomerblog.com/2020/08/unused-mammogram-mach...
Happy Weekend!
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Hi folks!
number 10 finished. My counts are down (before the infusion), and I am super tired. I just want to sleep! But I need to work, and i have a lot of home projects that I just have no energy for. And I want to make a bunch of masks and do Halloween stuff. Have had to use a cane or hiking pole all week as unsteady on my feet from neuropathy. And now I feel like I am just whining.
I am doing a rowing group for cancer recovery, which has been fabulous. We have now moved inside as the days are pretty short and it is getting cold. I rowed on the erg (Zoom workouts) this morning.
Other good news is I have doctor's order for ice cream twice daily!
I hope everyone is well.
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YesIAm- ice cream twice daily is my kind of medicine!!
I just had 9 of 11 on Friday. It does get a little more draining each time. Like I just want to sit around but my house needs deep cleaned BAD.
Keep rowing forward!! We’ve got this
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Does anyone here know the statistics for complete pathological response vs residual disease for ER/PR neg HER2 pos after the standard 6 infusions of TCHP? I just had my fourth infusion of TCHP and I’m hoping for CPR of course, but I keep track of this thread because I know Kadcyla is my next treatment option if I’m not lucky enough for CPR. And at this point I’m not exactly feeling lucky with the whole cancer thing — although I know my diagnosis isn’t too terrible and my SEs from TCHP have all been very manageable
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Meibo - I did not have a pCR with 6 rounds of TCHP. So after surgery I had 3 rounds of AC (couldn't manage the 4th round). Kadcyla was just getting started & my MO said we'd save the "big guns" in case they were needed later. But like you - I watch this thread.
The good news in answer to your question is I am still NED 6+ years after my last herceptin infusion. No Kadcyla needed (yet). I was Stage 3 so don't give up hope.
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@Melbo - i believe its 60-65% chance of a PCR for HR-/HER2+.
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I'm contemplating asking my oncologist to let me skip my last two treatments of Kadcyla and do Herceptin only for them instead.
I have had 12, plus I had one of Herceptin alone while we were waiting for surgery results.
I had Stage 3A invasive lobular carcinoma in my left breast, and there was a very small spot of DCIS on that side as well. Chemo killed everything in the breast itself. I had 4/19 nodes with active cancer cells detected after surgery, and there were other nodes with evidence of disease that had been killed by the chemo.
My cancer was ER+, PR-, HER2+.
I have a lot of side effects. The most severe one is nosebleeds. They happen every day to some degree, and lately they're getting worse - I assume due to the cumulative effect of the chemo. I have had them last up to 3 hours. I have to sit with my nose dripping into a trash can because Kleenex are useless for the bad ones.
I also have a very reduced appetite, I feel full quickly when I do eat, neuropathy in my toes is getting worse despite taking Vitamin B6, my heartbeat is really strong (when I sit with my legs crossed, my leg noticeably bounces up and down to the point that other people see it, and I can hear it pounding in my ears sometimes, and I wake up at night from it sometimes).
I also get really blurry vision, where I can't see clearly more than about a foot in front of my face. And headaches, which are getting worse the longer the treatment goes on.
I was diagnosed Aug 30, 2019. Had 6 rounds of TCHP which was very rough. Had to go in 2-3x a week for fluids and electrolytes the whole time. Diarrhea for 4.5 months. Double mastectomy, then a follow up surgery to remove more lymph nodes since my sentinel nodes had cancer cells. Then reconstruction to place my implants. Then 25 rounds of radiation. The Herceptin and Kadcyla infusions. And started Tamoxifen in June.
To top it all off, I got Covid last month. Fortunately I had mild symptoms and have recovered.
But I'm just...tired. So tired of it all. I can't take weeks more of these nosebleeds. Some days I can't start work until it stops (I'm working from home but still expected to be started by 9 am). Then I have to work late to make up for it. It's increased my anxiety because I never know when just itching my nose, sneezing, or blowing my nose is going to set it off. Sometimes it comes out of nowhere
12 out of 14 rounds of Kadcyla is 85%. And I'm willing to do Herceptin alone for these last two, because I know it's the chemo agent in the Kadcyla causing the nosebleeds. Surely the additional benefit of the Emtansine for two more rounds can't be that significant, can it?
I have an infusion Friday and will talk to my oncologist. I'll do whatever she recommends because I trust her, but I'm just so tired of it all.
I'm open to any opinions. As for the nosebleeds - there's nothing that can be done to stop them. The blood comes from too far back to cauterize when they happen. Afrin doesn't help. So I have no options when it comes to that part at all.
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Hi BlueCoconut, you have certainly been a trooper! I would definitely talk to your MO since each case is different, but maybe my situation will ease your concerns.
I wasn’t as brave as you. I only did 2 Kadcyla treatments and then I asked my MO if it was OK to just do Herceptin. In my case, he said it was fine. I’m Stage 4, oligometastatic with only a small spot of mets on my spine.
((Hugs))
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oligometastatic
Is this different from metastatic BC?
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“oligo” means “few”, so I’m still considered to have MBC, but my MO is treating me with “curable intent”. This meant that I chose to have BMX surgery, whole breast radiation to my left side and SBRT for the spot on my spine. We hope this aggressive treatment will put me into the group of MBC patients who live a decade or more rather than the average survival of 2 years.
Oligometastatic started to be used as a classification in 1995. It is still debated in the literature from what I’ve read.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380228/
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30718-1/fulltext0 -
thank you for the explanation
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oh, BlueCoconut, you have had it rough. I’ve been on a similar path since August of 2019. I did manage to escape radiation, but I know the fatigue you are Feeling. I have 3 more Kadcyla treatments. I do wonder how they arrive at 14 being the magic number. Good luck with your MO and keep advocating for yourself.
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BlueCoconut -- wow that sounds like a lot! I am sorry to hear it has been so rough.
I have also wondered how they came up with 14 for the trial and now as standard treatment. I also wonder what effect a reduced dose (I have been only getting 3 mg/kg since #7 because the neuropathy was so severe) might have on my risk. But that we will never know -- it will be 0% or 100%. Sigh.
I am tired. Sleeping a lot. Work has also been stressful, and I have to make so many adjustments due to chemo-brain, which seems to be getting worse. The good news is that a friend (who was stage 3c with +++ immediately after herceptin was approved) told me she found the chemo brain was at its peak about 12 months after last TCH, so hopefully I will be getting better starting soon.
I am so grateful to have this group helping me through! Thank you all for sharing your experiences, your support AND your celebrations! And I have been passing along the shared wisdom here with my oncology team, as all of us started fairly soon after it was approved for early-stagers. Thank you!
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I am so grateful for the info we share on this site.
I was getting a lot of side effects from Kadclya and completed 9 of 14 treatments. I also had 7 Herceptin treatments before my surgery. My doctor thought it was okay to stop the Kadclya mainly because of the neuropathy in my toes, pretty much lost feeling in first 3 toes on each foot, and now I'm experiencing a pulsating sensation under my foot.
Anyone else having this problem with their feet? I am pretty sure its from the Kadclya treatment.
Also, thank you for sharing that one of you had "credits" from 3 Herceptin treatments and only doing 11 Kadclya. That makes me feel good that I got through 9 Kadclya and already did 7 Herceptin. Hopefully I'm good that way.
Good luck all....it is a long road of treatment! Many ups and downs but I am smiling most days now and the perma Frown is vanishing from me! ......God Bless!!
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