TRIPLE POSITIVE GROUP
Comments
-
Question for anyone that might know (will ask my MO next time i see him (6 weeks).
I was reviewing my full surgical pathology report and compared the HR/HER2/Ki-67 to my biopsy pathology.
ER+ 99% (on both)
PR+ 10% biopsy and Negative 0% on Surgical
HER2+ 3+ (on both)
Ki-67 60% on biopsy, 10% on Surgical.
Is it normal that some of them changed/dropped? Also does being ER+/PR- matter much? I would think I'll still be treated the same for Hormone Therapy but, wasn't sure
0 -
You're right, Special K! It is much quicker than an infusion, in that it's just one shot, administered by a doctor/nurse.
0 -
ET - do you remember the member that used to post here Cherry? She is in Sweden and got the injection - that is what I remembered and also remembered seeing that it had been approved for use here relatively recently. Definitely quicker for sure!
morrigan - the way the percentage numbers are arrived at has to do with how the slides are viewed in the lab. The slide is prepared - biopsy and surgical are done the same way - and the pathologist counts 100 cells, and how many contain a receptor - so if your biopsy slide had 99 cells with an ER receptor, you had 99%. These counts can be subjective depending on where the slide prep was done from on the tumor, because tumors are, for the most part, not homogenous. Once receptors are identified one is deemed positive, but very low percentage receptors are sometimes treated as ER-/PR-. Some testing platforms also have a range, rather than a specific percentage number. Keep in mind that since you had neoadjuvent chemo, the cells in the tumor could/would have been affected, downregulating to an extent. FWIW, I too had a low-ish PR reading on biopsy, and then had Mammaprint done from a biopsy sample because my BS was participating in a trial with Agendia Labs. Mammaprint showed me as PR-, which unfortunately, is thought to be a marker for increased aggressiveness. Not much is well understood about the role of PR and you are correct, your anti-hormonal options remain the same.
0 -
I loved my port, in fact finished my year of Herceptin 2 years ago and still have it! Most of the time I forget I have it, have had no issues with it. I go to infusion center every 8-12 weeks and have it flushed. My MO said it can come out whenever I want, for now I am ok with it. Maybe I am being overly cautious, but a little piece of mind just in case.
0 -
On the port question - my oncologist wanted me to keep mine for two years post-Herceptin, as a minimum. I ended up keeping it for six years, it was removed in 2017. Mine was a very tiny subclavian port, should have been visible in all necklines except a turtleneck - don't wear often in Florida, lol! - but was so well placed that you couldn't see it. I had a lot of surgical intervention during that time and could have had it removed at any time but I kept it for a number of reasons - my MO wanted me to and I trust him on all subjects, it was placed during BMX by my BS so I had no external scar, he used the mastectomy flap so removing it would mean a new visible scar, having the port flushed every six weeks meant I was on the infusion nurses radar so I could ask questions, get med refills, etc. Also, considering I am a pragmatic person on the whole, I was surprisingly superstitious about removing my port - a number of my experiences during treatment did not go as expected, so I was clinging to my port like it was an evil eye, lol! I was ready to have it out in 2016 but a week prior to that scheduled reconstruction related surgery I had a bilaterally abnormal PET scan, so my MO told the PS not to remove it. When I did have it removed a year later it was done by my PS so I have a beautiful incision line, not noticeable at all.
0 -
"morrigan - the way the percentage numbers are arrived at has to do with how the slides are viewed in the lab. The slide is prepared - biopsy and surgical are done the same way -"
I'm going to ask my MO because if I'm reading it right this is most likely a different tumor. I had 4cm of DCIS with several spots of tiny IDC popping through. Looking at the pathology they only tested 1 of the IDC for Hormone Status.
I'm not going to sweat it, nothing I can do about it and since it doesn't change my treatment plan we'll just keep chugging along
0 -
mmorigan - I have heard of peoples pathology changing, but I'm not sure if it's a different tumor. I wouldn't sweat it too much either, your still really ER and Her2 positive either way, so on the right treatment plan
SpecialK - it's nice your ps took out the port so there is less scaring, when I'm done with all my treatment, I am going for a Diep Flap, so hopefully I can do that too
0 -
I never had a port and had no problems with Herceptin. I did not get a blood draw every time like before chemo. And the injectable form of Herceptin was approved by the FDA while I was getting it--I asked how quickly it might roll out in the US but was told these things take time--to train the nurses, manufacture the supply, . . . , surely not in time to affect my treatment. There are several posters on BCO who received it this way--I think it takes about ten minutes, and goes in the thigh.
0 -
Ingerp, thank you for the info! A 10 minute injection in the thigh does not sound like fun... ouch! But it does sound more appealing than an hour long intravenous infusion. Too bad the pill form isn't out there yet.
0 -
Hello friends its Angelsgal,
It has been a while since I have posted, though I read this every day. Wanted to share what I have found to be true in my case regarding infusions that was confirmed by my friend who was an oncology nurse in the office where I have mine done.
If you do a 90 minute drip rather than a 60 minute drip you will have far less joint and muscle pain in the proceeding weeks. I know it seems like a long time but in the long run for me it is more tolerable on the body in so many ways.
On my final Kadcyla 3 weeks ago I forgot to remind the nurse that I get a 90 minute drip and she did 60 and I had a very rough time recovering on those last 3 weeks from insomnia, to total body joint and muscle pain and headaches.
A 10 minute injection sounds awful to me.
Take care everyone, be encouraged and stay faithfully strong.
0 -
All -
I finished up my last round of chemo, and would like to hear from you all what to expect in terms of side effects when I'm "just" getting Herceptin/Perjeta. It's obviously hard to tell what's from the chemo and what's from the others, so I'm curious what went away for you all and what stuck around. Thanks!
Kris
0 -
I only had 1 HP but there were no SEs
0 -
I had my third HP only and I don’t have much in terms of side effects. My nose runs and my 💩 are loose, but that’s about it. Very easy to tolerate for me. Good luck
0 -
I agree with Morrigan and Fab4mom, the SE’s from HP infusions have been few to none for me so far. I’ve done 3 HP infusions so far. Hoping the same to you Wahoomama! To be honest I was expecting a lot of diarrhea (figured people call it poojeta and perjetarrhea for a reason!) but that hasn’t been the case much. Much more tolerable than TCHP for me
0 -
The taxanes (Taxotere and Taxol) are tough on the digestive system --- they contribute quite a bit to chemo diarrhea. I never had diarrhea while doing Herceptin.
0 -
Angelsgal, I agree with the 60 or 90 minute infusion. I have always recieved 60 minute HP with an extra bag a fluids. I still have bone and joint pain, but tolerable. When the nurse forgot last year and gave me 30 minutes, I had every SE for 10 days!! 4 more HP to go!!
0 -
My first Kadcyla was 90 minutes, 2nd was 30 minutes. I seem to be doing just fine with the 30 minutes but, I have seen others report going to 60 or 90 minutes in order to reduce SEs. I'm going to keep that in my back pocket for now.
With Kadcyla the only SEs I have and they're random, occasional headache, occasional runny nose and loss of appetite (new for cycle 2) for 3-4 days but, I'm totally cool with that - helps lose weight/keep weight down.
The only consistent SE is dry mouth. I always feel like I'm stranded I the dessert.
For HP I just did the 30 minutes infusion (per drug) and didn't have any issues.
0 -
I endorse the 90 min infusion - mine with chemo were over 90 mins, but it was accelerated when given without. I did not have issues with bone pain during chemo at all, but OMG I had intractable hip and leg pain for about a week after first targeted therapy only. I asked to slow it back to 90 mins and no further problems. Some who have made this request have encountered pushback from the oncology nurses because it means you are occupying the chair longer. Some centers will charge an extended infusion room fee and /or require the one to order a slower infusion. I always made my chemo appts for first of the day so I could get started without any delays, but when receiving targeted therapy only I made the appt for late afternoon when the infusion room was more empty. That worked out fine. The infusion directions are to give without chemo as rapidly as 30 mins, or as slow as 90 - so doing it slowly is a legit request if it is causing discomfort.
I was one who struggled with the Big D even after chemo was done, infusion room nurses recommended taking a probiotic, which worked.
Congrats wahoo on finishing - I started to feel markedly better at the 6 week PFC point. With targeted therapy alone I had a runny nose and the aforementioned D, which was mitigated. Other than that a mild persistent headache, particularly as I got closer to the end, but handled with Tylenol. Some people experience slower hair growth but I did not, it was slow to start but once it came back it grew at my normal rate
0 -
I expect COVID might require more of a fight for a longer infusion time due to the cut down on available chairs. However, we have to do what's best for our bodies in the long run.
0 -
Thanks everyone! I have had some issued with diarrhea (round 4 was particularly bad for me) but I think it was due to the Taxotere. They reduced by dose by 20% for rounds 5 and 6 and I had almost no issues, so I'm hopeful that the Perjeta alone will not be a problem in that area. I get HP over 90 minutes - 30 for Perjeta, 30 minute break, 30 for Herceptin, so I imagine they will continue that. I have the runny nose too, but with my allergies, I'm use to that. Mostly the only part that bothers me is how it drips out without warning - but I think that will resolve somewhat once I get nose hair back!
0 -
My only SE with HP was a constant runny nose. Normal life otherwise.
0 -
it never even occurred to me to change my drip time. I’ll definitely keep that info in my back pocket as I get ready to switch to Kadcyla in a few months. I’m on HP now, and through radiation, and the quicker I can get it over with the better. No major side effects.
0 -
For my second infusion today of Tchp, my oncologist dropped the perjuta due constant diarrhea during days 5 thru today. So hoping that changes that side effect. She will add it back next time but at a reduced amount if it is found to be the cause of the Big D.
0 -
Diarrhea is a big side effect of TCHP for some people. Mine was controlled with Imodium, but I think it’s not that uncommon to have to change the formula if it’s too bad to control.
0 -
I only had "chemo lite", i.e. TH, but I did find that being sure I was "cleaned out" the day before chemo was a helpful strategy. I took whatever I needed to take, mirolax, over the counter products etc. to empty my bowels and had much less problem with the constipation/diaherra syndrome. I also started and continue to take a probiotic.
0 -
Hello. I finished my last (#12) chemo/herceptin combo last week. This week I’ve been experiencing heavy mood swings, but mostly very angry. I was receiving steroids each week before infusion among other premeds. Could the mood swings be withdraw from steroids, kind of like “roid rage”? Has anyone else experienced these types of mood swings?
0 -
Lamloved -
I had the SAME issue and the culprit was the Taxotere. They dropped my dose by 20% for Rounds 5 and 6 and it made a HUGE difference.
Kris
0 -
wahoomama87…thanks for the tip. I am going to keep better track of the big D this round. My oncologist seems pretty open to adjusting so if it like the last round I will try to get her to reduce the Taxotere.
0 -
I am on round 3 of TCHP this week. I am thankful to be feeling really good days 8-21. A little more tired and I have a hard time being outside in the heat but I can handle that! The only new thing that I am experiencing is joint pain especially in my elbow. Has anyone else experienced pain in their arms? Are any of you having a mastectomy after your 6th treatment before starting the year of additional therapy? THANKS!
0 -
Dear cdw2020,
Welcome to the BCO community. We are so sorry about your diagnosis and so glad that you reached out and joined our community. If you complete your diagnosis and treatment profile and make your information public our members will be able to see a bit more about your situation as it will appear in your signature line. We are grateful that you are here. Let us know if we can be of assistance as you navigate your way around the boards.
The Mods
0
