Kadcyla for residual disease after neo adjuvant chemo
Comments
-
countca04 - I’m the one doing the 11 Kadcyla and being given credit for 3 Herceptins. I think the Herceptin is the key. For early stage breast cancer, Kadcyla is like a supplemental insurance policy- but the Herceptin in it is the star.
I hope your neuropathy gets better soon! I have two treatments left and have noticed my feet get a burning sensation more.
0 -
Morning,
I am on this thread looking for answers as I’ve had intense pain in my feet especially on the bottoms. It varies in intensity but seems to be getting progressively worse with each kadcycla treatment. I go in the Wednesday for #4 of 11. I mention this to my oncologist each visit but it just gets shrugged off. In addition my left hip joint started hurting. I’m 44 and prior to all this crazy town of breast cancer I was at my best physically mentally emotionally and spiritually. I started my treatments of tchp in March and completed all 6, had bmx July 27th with reconstruction and have regretted having implants however I’m glad to have tried but now am playing the waiting game as my plastic surgeon wants me to think about it and finish my kadcycla treatments first. Does anyone else that is having side effects with kadcycla feel like their the odd one out as this treatment isn’t as bad as the tchp? I also have nausea and lack of appetite but that doesn’t bother me as much as my feet and I gained weight on tchp so I don’t mind loosing some. Thank you e0 -
The feet is probably neuropathy have you tried taking anything for it?
The hip is probably from the Kadcyla which causes joint/bone/muscle pain so that's probably it.
0 -
Cassandra -- I have had terrible neuropathy in my feet but it hasn't been clear if it is from Kadcyla (could be) or the TC (The taxotere can cause neuropathy to show up up to 9 months after finishing!) I had an 8 week break in treatment then was restarted on the kadcyla at 3.0 mg/kg instead of 3.6.
Am also using topical lidocaine on my feet, 60 mg of duloxetine and now am up to 3300 mg total of gabapentin a day. And exercise. As hard as it is and as much as it hurts, that REALLY does help. Oh, and ice packs on me feet throughout the day, and often night as well. ONE silver lining to chemo-pause hot flashes!!!
0 -
I'm on 6/14, so far it's been pretty good. My AST is a little elevated 34 (normal is 32) but, it's actually gone down, I had hit a high of 53 on Cycle 5 (no idea why).
My platelets are 129 but, my WBC and ANC keep hitting low numbers. This cycle I was at 1.9 WBC and 1.0 ANC. I had a Neulasta after Cycle 5 and another after Cycle 6. Other than that my only real issues are Constipation and some joint pain.
0 -
Thank you for all the replies. I talked to the oncologist and she agreed to change back to Herceptin only for the last two infusions. So I will have had a total of 3 Herceptin only and 12 Kadcyla when I finish.
I got Herceptin only infusion last Tuesday, and then my last one will be Nov 10th. After that it is just my Tamoxifen daily for 9 1/2 more years lol!
I’ve had neuropathy in my feet during the Kadcyla treatment and it’s definitely gotten worse over the last few weeks. My toes especially feel really weird now, and over the past few days I’ve gotten some stabbing/burning pains on the soles of my feet. I’ve been taking Vitamin B6 to help with it and it has worked ok. I’m hoping it will ease up now that I’m doing only Herceptin and then improve once the Herceptin is completed. I haven’t tried ice packs but I’m going to give that a shot!
My nose bleeds are still happening but have improved. In the last week I’ve only had one that was severe, and it only lasted about 45 min at most.
My anxiety is still high. I talked to a mental health PA and he prescribed me Buspirone to try. I’ve been taking it since Wednesday evening and it seems to be making a small difference. He said it can take up to a month to be completely effective.
I’m looking forward to feeling better
0 -
I asked my new oncologist (who specializes in breast cancer) about statistics for pCR after TCHP - he said the literature says 50-60%, but he expected those numbers to start improving with more people getting Perjeta. He said that since he started using Perjeta all but one of his patients had been pCR. Granted it’s one doctor and he didn’t say how many patients that had actually been, but it sure sounds like promising news to me.0
-
i think it depends on your cancer. It's harder for Triple+ to get pcr because the HR+ interferes with the HP
0 -
Hi all, and Happy Halloween!
I kind of need a pep talk. I had number 11 yesterday, and got my second prolia as well. Today I feel like I have been hit by a truck! Also the chemo brain is REALLY bad and I can't focus at all and I can't remember anything. Through the horrible neuropathy once I took a break and got the pain under better control, I have felt like: even if I have to walk with a cane the rest of my life, I need to finish this. Just if the cancer does come back, I want to at least know I did everything available to prevent it. But today I really feel like calling it quits. I wish they had had enough data in the KATHERINE trial to do sub-group analyses of those who didn't make it all the way through. Also I can't figure out reading the study why they chose 14 as the number of infusions.
I hope tomorrow is better.
I I really, really, really hope that all of you are doing much better than I am, and able to have some fun!
0 -
hi all and especially YeslamaDragon
I just finished 12/14 Kadcyla treatments and I feel very similar to YeslamaDragon - Not much of a pep talk, maybe more like commiseration. I want to be able to know that I did everything possible to beat back this cancer. I feel like the pain TCHP and BMX will potentially be sacrificed if I don’t finish Kadcyla - that could just be my own neurosis, but that is how I feel. Wow, Kadcyla is hard. My oncologist kinda shrugs when I say that, I live in a smaller city and they just haven’t seen many women make it to 14 treatments. But I’ve got neuropathy in my toes and fingers, pretty constant low level nausea, headaches, brain fog, fatigue, Constipation, weird skin rashes, super easy bruising, muscle cramps - treating all my side effects takes so much time. I’ll finish on December 7th, and then start to work on any residual side effects. I am thankful for the chance to have this treatment, and I kinda hate it at the same time.0 -
Thank you Sueba -- that is it exactly! On the day of my infusion I felt very much like that day in my last week of radiation when I just started crying on the table. I was just so TIRED of it all! And now I am just tired of it all again.
But it turns out I was also coming down with something. Was feverish all night, have a dry cough and headache. I hope it is n't COVID, and honestly I can't imagine how I could have picked up even a cold -- I have been SO careful, even wearing a fit-tested N95 when I need to be around other people. Trying to decide if this is like the TCHP where I was instructed to call for any fever or if I can ride it out and see how it goes. At least pre-infusion my white count was actually back in the normal range! I don't know when nadir is with Kadcyla. Since I switched to the smaller community cancer center, it is the onc NP who is on call nearly every weekend, so I hate to be a pest.
0 -
I wish I can offer a great pep talk but all I can say us you are both so close to the end. You can see the light at the end if the tunnel. Just hang in there a little longer and you have this behind you! ♡
0 -
Thanks, Morrigan! I do hate to come here and whine so much, as many women have a much easier time on Kadcyla than I have, and I really don;t want anyone who has been recommended to start kadcyla to come here and see all my whining and think, "Oh! I don't want that!"
I appreciate the encouragement!
0 -
Well, the poor Onc NP was on call again, and she sent me to the ER for what I had thought would be a quick swab for COVID and flu and all. Instead I have spent much of the day there, having blood cultures and every possible blood test, chest x-ray, and getting a liter of fluid. All I wanted to do was come home and curl up in bed.
Now back home and DH welcomed me with a mug of cocoa with whipped cream! Once I have finished that will curl up in bed.
0 -
yeslama dragon
Have you gone to an OT for chemo brain? My MO referred me and it was helpful - (funny when I went I thought I was going for issues with my arm/light lymphoedema, but apparently I was sent for the cognitive issues I complained of). I am not going to say it was mmensely useful; but it was enough that I would suggest checking it out.
0 -
Last kadcyla was Tuesday! My awesome kids got a pinata and I gathered several women friends in my yard, as I smashed the pinata (ring the bell!) I read my cancer prose I had written, hadsome wine and chocolate. Was truly perfect celebration.
Still lots of anxiety, but such relief at finishing this piece. It has been a really long haul - diagnosed July 2019. Chemo, single mastectomy, radiation and then more chemo! Now it's "just" tamoxifen. And decision about reconstruction
0 -
CONGRATULATIONS FLOWER KID!!!!
And what a nice celebration!
0 -
Congratulations Flower Kid!
0 -
That’s awesome, Flowerkid!!!
0 -
I am due for #12 tomorrow. I am tired, and I have this dry cough that isn't going away. It may just be the sudden weather change to winter and dry cold air, but I do worry about lung damage from the Kadcyla. Will see what they say tomorrow.
I also really need to go to PT, but right now with COVID spiking here (as everywhere, it seems) I worry about ANY additional exposure. And I feel my brain is too foggy to make big decisions, but not sure if that is just the pandemic fog everyone seems to be in or if it chemo- and Kadcyla- brain.
I searched medical trials databases, and I don't see any studies of Neratinib after Kadcyla for us folks. Does anyone know of any? I also keep looking for word of the 5-year follow up data from the Katherine trial.
0 -
i have not heard of any studies but, I do know several people in my Kadcyla Facebook group have gone to Nerlynx as their next step. I believe MOs and, Insurance are treating it as 1 year of Kadcyla = 1 year of Herceptin.
0 -
I hope everyone here in the US had a wonderful, safe Thanksgiving!
We discovered mini-pies (baked in cupcake pan) and Zoom get-togethers are actually really good. Ans since i generally work the day after Thanksgiving, we may continue the Zoom/Facetime Thanksgivings in the post-COVID times. I was able to see cousins I hadn't seen in years!
In Kadcyla terms though, I have been really struggling. I had another one of those lightning cramps Friday evening, this one in my calf. It only lasted less than 2 minutes, but my calf is still so painful I can't really walk, even now about 40 hours later. I have tried massage (ouch!) heat, ice, epsom salt bath, stretching.... It hurts so much I started worrying about compartment syndrome, but the muscle doesn't seem tight (to the extent I can assess, it really hurts to poke on it!) My potassium and magnesium have been good all along, and last week my numbers ALL looked good -- even my anemia has improved! And I have been staying well hydrated. I only have two more to go, but I am just so tired. I am going to try to take off the day after my next infusion, and possibly the Monday as well, but it is going to be hard because of staffing issues at work. I am hoping if I rest up after the infusions it will be easier to get through the rest of the cycle. Fingers crossed.
Flowerkid -- I haven't gone to OT. I would love to, but I just feel like right now I cannot take any more time off work. I am hoping that in about 2-3 months the work situation should get better. The timing of everything just is rotten. In the meantime, I just write EVERYTHING down and rest when I can.
0 -
YesIAm - sorry you are still experiencing the cramps. I did have calf muscle cramps a couple of times and it is excruciating!
I had my last Kadcyla on 11/20. This one happened while I was fighting a sinus infection so it really drained me physically and mentally. But I am done and thankful for the opportunity to have it. I hope you are able to take some extra days off to rest. We’re in a bind a work tow and I hate taking off for medical reasons but I keep telling myself that I have to put me first right or - you should too!!
Glad to hear your Zoom Thanksgiving went well! It’s nice something good (like talking to cousins and family members you have seen in years) can come out of this awful pandemic.
I hope all of my Kadcyla sisters are doing well!!
0 -
Got #8 on Monday, so far, so good.
With #7 I got some neuropathy in my feet but, I added Glutamine to my diet and it went away. I'm down to 1 dose of 10g/day but, if I start to get pain or pins & needles in my feet again I'll go back to 10g 3xday.
For #8 I had a headache today took a few Tylenol to clear it up. I'm not sure if its Kadcyla related or simply because I'm a little dehydrated today.
Other than that the only continuous SE is constipation
0 -
Angie - congrats on your last kadcyla!! Yay!
Yeslamadragon - it is true that timing is essential in life. Wishing you some physical peace, two more cycles to go!
Thought I would update on myself - I cannot believe it has been a month since my last and final chemo. Feeling super tired, like I have to rest A LOT. Not sleeping great at nights. Headaches and achey. Slight throatache. Hard not to think I have covid half the time. - I do understand it can take 6 months - year to get the chemo out of my system.. and then of course I am on tamoxifen which has a whole host of side effects. Guess I should call my oncologist.
I just made an appointment for port removal at end of December. I am rather anxious about it. Love/hate relationship with my port.
0 -
Flowerkid - sorry you are still dealing with some lingering SEs. Have you tried melatonin to help you sleep? I’ve been on it since I was diagnosed.
I am ready for the call to remove my port but I will let my oncologist make it. I have extreme gratitude that I had it
0 -
AngieB - Congrats on finishing Kadcyla, I'm only on #8. What are your next steps besides removing the port?
0 -
Thanks, morrigan!
I have a 6 month follow up with my breast surgeon on Dec 14. I also go to have a CT scan and to get my port flushed and meet with my oncologist. The CT scan is just to check on things since I had two small nodules in my lungs. After that....just taking my Tamoxifen and living with purpose
0 -
Cool!
1 -
AngieB
Can I ask what the ct scan is for?
I also finished kadcyla and am taking tamoxifen. I was told there are no more scans necessary. I have been wondering "how do I know I am cancer free?/when can I day I don't have cancer anymore?".
And - I also ended up being very appreciative of my port!
0
