Neoadjuvant TCHP - Post Results Here
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cchix - congrats. I know you don't feel like celebrating just yet - but finishing chemo is a BIG step. Keep us on the loop w/your BMX. We'll be rooting for you.
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cchix, you'll feel better and better as the days and weeks go by. You did it! You finished chemo. That is no small thing. I had my MX about 3.5 weeks after finishing chemo and it was very tolerable, relatively speaking. I will hope the same for you.
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Hi all,
Among the ~40 people that I have been able to see the pathology results from, of those who posted that they had neoadjuvant TCHP, here are the basic findings:
- 37 respondents
- 50% chance of residual cells, 50% chance of pathologically complete response (20/20)
- the stages ran from I-III
- I don't believe most of those who were HR+ did any hormonal suppression during chemo.
- Surgeries ranged from all types -- lumpectomy, single or bilateral mastectomy
Among those with a PCR:
- 10 HER2+/HR-
- 8 Triple Positive (HER2+/ER+/PR+)
- 1 HER2+/ER+/PR-
- 1 respondent didn't report hormonal status
Among those with cells found:
[I think all reported various levels of shrinkage prior to surgery -- so the drug did some significant work -- plus many had early stage disease so disease was smaller to start with.}
- 6 HER2+/HR-
- 6 Triple Positive (HER2+/ER+/PR+)
- 3 HER2+/ER+/PR-
- 1 respondent didn't report hormonal status
It seems there was a slightly greater chance of a PCR if you were HR-; a larger data set will probably reveal more details. ER+/PR- status appears to be more rare so there were less participants generally.
Still, these results are generally favorable.
I'll try to do another compile later this year as more folks report their results.
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thank you for putting that list together Agness seems that perjeta has really helped with getting better results
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Thank you MinusTwo. Surgery was on Thursday and I am recovering. Hoping that I don't need this drain much longer and hoping to hear from my BS about the pathology of the lumpectomy and sentinel node resection. Fingers crossed!!!
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Pumpkin - I know you're glad that the surgery is done. I had drains for more than a week each time, Yes they're a pain but I was actually glad to get rid of the fluid instead of trapping it inside. The hardest part is waiting for test answers. We'll keep our fingers crossed too. Remember - take it easy. There will be healing going on inside that you can't see for some time.
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agness -- Thanks for the summary! That's great info to have.
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I'm just popping in to report 5 months after completion of chemo. Feeling nearly normal, finally! My toenails don't look bad and don't hurt, but they have some dark spots that show the effects of chemo. No nails fell off, though, nor are loose (thought my fingernails did start lifting a bit--but that's all gone now), and I didn't do anything other than use some nourishing polish while doing chemo. Whew!
Hair is still under an inch, though. And stomach acts up a bit now and then, but nothing big.
Just started on hormonal treatment.
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I hope you all are faring well!
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11 hours ago cchix49 wrote:
I made it! Surgery went well. He found nothing of the 6.2cm. tumor. Gone. He did not cut into my chest muscles. Tumor had been into my chest wall. No visible of cancer. Thank God. He removed a cluster of nodes. That was new to me. I thought they would be removed individually. I must have missed something along the way. Anyhoo, I go back Monday 21st for drain removal and path results. I am sore and nauseous but taking meds. The pain med makes me nauseous thus the nausea med. I have slept a lot. Yay. Chemo has taken my good sleep away. The drain tubes are gross but no problem. Hey, with what I have gone through, not going to let some little ole drain tubes gross me out. Thanks for all the prayers and well wishes. If I can be of any help with sharing my experience, please ask. Would like to hear yours on how long were you sore and the node clusters.0 -
Hi everyone,
I start my course of TCHP tomorrow. Six treatments, three weeks apart. I'm nervous, getting ready tonight. Trying to figure out what I should take with me to chemo.
This is the beginning of a long journey....fingers crossed
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Hi there edwsmom! I know it seemed like I packed up for a mini-vacation my first chemo. I would take my laptop, phone (phone charger) or a good book to read. Snacks...you're going to be there for a while, so several snacks. Do you have your ice bags for the taxotere? I took frozen bags of peas (stuck them in the freezer when I got there) and just used them during the taxotere phase. I'd just sink my fingers into the bag like claws. Some people do the icing on their toes too, but I did not. You may want to suck on ice chips during taxotere also, to prevent mouth sores. Do you have a port? If so, don't forget to put your lidocaine on an hour or so before your appointment, then cover it with saran wrap or something so it won't rub off on your clothes. Good luck tomorrow! You'll get thru this! --Lorie
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edwsmom - posting a link below that is not really active but pretty comprehensive if you read through the header. Also I found it useful to join the "current" chemo thread. It was so nice to get support from others in the same place. I'm not sure if that would be September 2015 or Fall 2015, but you can find in on the active thread list. Good luck. It's never as bad once we see what's happening & end the suspense & the fear.
https://community.breastcancer.org/forum/69/topic/706846?page=56#post_4498508
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Oh my goodness, cchix49...that is fabulous news!! So so happy for you! You ARE still in the hospital, right? I was feeling better about a week after surgery...then MUCH better after my drains were out after 10 days. At four weeks, back to playing tennis!
I just had my exchange surgery today and was so relieved to see that I didn't have drains this time...I forgot to ask so I was kinda expecting them. Take care! --Lorie
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Had my 6th and last THCP yesterday. MO reduced the taxotere 40% due to neuropathy and leg weakness for last infusion. I had been at a 20% reduction of both the T and C due to critical neutropenia even with Neulasta. I experienced most of. The normal side effects, but it took about 10 days to recover each time. I worked for about a week and a half e a huge cycle and was able to use intermittent FMLA and my short term disability so was able to collect my full salary. I meet with the surgeon on 10/2 and will also have a mammogram and ultrasound on that day before I see him. I need to go back to work full time for a couple of weeks in order for my disability pay to renew and I can. Apply for a three month personal medical leave to cover surgery and radiation therapy. I will get full salary for that time also. At my last MO appointment, he said he can only feel the markers that they put in and could not find any thing left in the breast or lymph node. I am hoping for a pCR. I am not worried about the surgery as it will be lumpectomy and sentimental node dissection. Radiation scares me though. My tumor was on the left, bottom. Inner quadrant. I have so many questions as to how they are going to deliver. The treatment and still protect my heart and lungs. I have extremely fair skin and am also concerned about burns and blisters. I calm my self by reminding myself how completely terrified I was about chemo and I survived that! Glad to be done with it though. I have 12 more her elfin infusions to go, ski will finish. That in June 2016. I will start on aromas the inhibitor after completion of radiation. Hoping for minimal side effects from that!0
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@loriekg. I came home the next day. I was surprised you are only kept overnight for such a surgery. I have a lot of swelling under my arm where the cluster of nodes were removed. It hurts and pain run down my arm. I put in a call back to the nurse a few minutes ago so just waiting. I will know the path reports the 21st. God has blessed me so much as I have gone thru the horrible stuff. Good to hear you are doing well. We will hang in there. Take care.
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cchix49 - sounds good so far, especially about your chest wall. Fingers crossed for great pathology results for you.
Lorie - hooray for getting your exchange done. Did you have nipple sparing treatment or are you considering tats or faux nipples?
edwsmom - good luck with treatment, it is a very effective regime to be on. I iced my hands and feet and had no nail issues.
-Ann
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the anxiety waiting for my pathology reports is really getting to me had bmx Monday went back knti surgery next day for hematoma then had to have blood transfusions get to go home today was told 5 lymphnodes were taken out and were clear but we will see
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Waiting like that is just terrible!!
I'm a week out from my first treatment. I'm still struggling with diarrhea everyday. I wish there was something I could do to make that go away.
Beyond that the only other major SE I'm dealing with is mouth stuff. My lips and tongue are a mess - burning. UGH. I don't know if there's anything I can do to help with that, but it's very uncomfortable right now.
Question - for those of you who have completed or are farther down the TCHP road than I am - did you find your SE's to be the same each cycle, get better or get worse along the way?
Thanks for any tips or help....
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Edwsmom: I finished 6 rounds TCHP at the end of December 2014. My mouth was sore the week after each treatment-no open sores. I chewed on ice chips during during Taxotere infusion to help protect my mouth and tongue (I read about it somewhere..). I did end up with sores in my nostrils though. Yuck. The diarrhea was a a constant SE for me. Make sure you let your MO know about SEs. Mine was quick to try different medications to address the most bothersome SEs.
Hang in there!
Amy
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Agness—sorry I missed your question…no nipple sparing, and I am not planning on having them reconstructed. I thought about tattooing, but honestly, I don't think I'll do anything at this point.
Edwsmom—I finished up in May, and the first treatment was by far the worst! (I was most afraid of the diarrhea, so I started taking Imodium when I got home. I never waited for the diarrhea to come first…I still got it, but not severe.) Usually by 5 days after treatment, I was back to normal. Other than the diarrhea, are you feeling okay?
Do you have biotene mouth rinse and toothpaste? I couldn't brush with my regular toothpaste, it would burn my tongue, but the biotene toothpaste was okay. Like Amy said, chewing on ice chips during Taxotere might help. (OH…the nostrils…Amy, my nose is just now recovering!! I'd wake up with a scab in my nostril every morning!! Sorry TMI? Ha)
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edwsmom: I finished 6 rounds 6 weeks ago and am 10 days post box. I experienced different SE's as they added up. I only had sore mouth after "1 and then no more. I had "D" all 6 rounds but it was routine and only several times in morning. UGH. Nausea was about 3 days after treatment. I was faithful to take My nausea meds. Even set the alarm to not miss one. I never vomitted. My fingernails got sore and discolored after #5. Not sore now but still discolored. My feet became sore after #4. My taste was whacky about 3 days after each treatment and cumulated with intensity that lasted until just a couple weeks ago. Everything had a bitter taste. My appetite was off too. I have lost 25 lbs. so far. My appetite is better so I bet I can put the weight back fast
I had a nasal drip and gooey eyes. Nurse said it was from taxotere. That started about #3. Hair was gone after #2. I still have eye brows and a few lashes. My fatigue accumulated so by #6 I was very weak. I had tachycardia after#5 and was given atenelol which worked good. Could not walk more than 20 ft without having to rest. I am up and about good now. So it will get better after treatments. It was hard but you can do it and time will pass before you know it. Taking your last treatment is awesome. Celebrate it. Just the idea you don't have to take another of that kind treatment is a warm fuzzy feeling I had while I laid there feeling like ca-ca. Hope this helps. Everybody is different but this was my journey. I find reading about others is comforting and bonds me to this sisterhood. Gods Bless 0 -
edwsmom - lots of good tips above. Yes, keep ice chips in your mouth during Taxotere, but do call your doc and ask for the "magic mouthwash". It was great. I never had nausea but never got rid of the Big D. I lost a total of 60 lbs - way more than I needed to lose. I couldn't each much except bananas & mash potatoes & sometimes oatmeal. My staple was Carnation Instant Breakfast with extra protein powder added. I also went in between each infusion to get an extra liter of fluids. MOST important to keep hydrated. Also - be sure to tell your MO about all the SEs every time. He may have to adjust the drugs based on the cumulative effect.
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My SEs were very predictable, although I got weaker and weaker at the end and things got a bit worse all around.
SE was basically D. Absolutely nothing would stop it and I would get so dehydrated I had to be hospitalized the first 2 cycles and then had IV drips for 2 weeks solid at home during all the other cycles. And because nothing tasted the least bit edible, I'd lose 10lbs each cycle and then would put it back on between cycles (or rather at the end and beginning of them). But by the 6th cycle, I was anemic... As soon as I could eat I got as much protein as possible into me... lots of red meat, even though it isn't the healthiest thing...
5 months later... my weight has all come back (I'd lost around 20-30lbs).
I had some neuropathy in my lower legs and feet. No pain, just weakness. That has been improving since the end of chemo, too. The top of one foot is still a little numb, but my one foot now has most of it's movement back to normal.
I never had much nausea... Just some during the first few days after infusion. The typical pills would work if I caught it on time and actually took them! Never got mouth sores, although it was very tender. My MO prescribed me L-Glutamine, which he said helps with that.
My stomach still gets a little upset now and then, and I get some mild D, but it's a lot better. I had D for months after chemo, but not bad enough to dehydrate me like during the cycles, thankfully... but still, ugh!
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April--how did you manage the diarrhea? I'm on day 6, and it is not letting up. Imodium is just not cutting it. My booty is so sore. I really feel if wasn't for the big "D" I would be feeling okay. I saw the doc two days ago, and he just looked at me and said, "oh, yeah, diarrhea". Thankfully I'm not dehydrated yet.
Anyone with any tips? I just hope it doesn't last too much longer.
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Fidget - Be insistent with your doc if it lasts more than a week. The Big D is nothing to fool with. If you haven't done so, switch diets. BRAT is one you can google, bananas, rice, applesauce & toast. There are several prescription drugs that might help more than over the counter. One is Lomotil. Keep pounding water. Good luck.
Oh - edited to say that for the entire treatment duration I was never without a 'light days panty liner' inside my undies. That saved me many times.
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Thank you MinusTwo. That's exactly what I'll do. Cold applesauce actually sounds good right about now. Will phone MO also.
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fidget, the big D is my main SE too. I'm told it's the perjeta and its especially rough the first chemo because of the loading dose. My doctor told me that it's highly unlikely to be as bad from now on because the dose is lower. I'll still get it as a SE but not as severely and now I have better meds for it.
Im still dealing with it but it's gotten better (I'm 9 days post first chemo). It's like 1x per day in the morning now.
My doctor said that if diarrhea continues you might have an infection called C diff. It can take a few tests to see it. I told her Imodium wasn't working and she gave me a prescription for lomotil, which works better. There's also another medicine that's a step above that. She said I shouldn't have to struggle with it. Don't just accept it.
I ended up going to the ER on Tuesday since I had a low fever (99.5). They said I had dehydration and they gave me 2 bags of fluid. Since then ive been feeling much better. I didn't think I was dehydrated and I was. I drink a ton of fluids and it still happened. Could you just go and get IV fluids tonight or tomorrow?
At the very least, make themgive you better meds that Imodium.
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Thanks so much edwsmom. I hate you had to go through all of that, but I'm glad I'm not alone. I'll ask the MO for better meds and see what he thinks. It's slowed down a little today, but I've not eaten much. Getting ready to grab some toast. I'm trying to stay hydrated with lots of water and Gatorade. I thought I recalled the nurse saying the perjeta would be less next time. I was there from 9-4 and she said it would be shorter the next time. Hope you continue to feel better!
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Yes. The perjeta and herceptin are loading doses the first time. I was told that subsequent treatments would be an hour shorter since those two would be half as much.
Hang in there. Hugs!
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figet & edwsmom - I didn't have a "loading" dose. It's been my experience that the doses are the same for all the drugs every time - based on your weight - unless you develop something like neuropathy. Many centers will shorten the infusion time & feed it faster after the 1st time if you haven't had an allergic reaction. I found that my side effects were MUCH worse with shorter infusion times, particularly the Herceptin. I always insisted that Perjeta was no shorter than 60 minutes and Herception was 90 minutes. Taxotere was 90 minutes & Carbo was 60 minutes. With TCHP, my infusion days were always around 8 hours. I insisted on that infusion time even through out the year on Herceptin only - 90 minutes. Also due to the continuing diarrhea, I always requested an extra liter of glucose/fluid with each treatment - so maybe another 60 minutes. And another liter of fluids 7-10 days later.
Good luck to you both. You can do it!!!
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ok so I was ready for my pathology reports had my dr appt this morning 8 days post mastectomy and the results are no tumor found at all but it's not final because they are going to send it out somewhere else and look even more thoroughly so that's good news right?!! Did any of you ladies show dead cells I know my lymphs are clean but would like to know if there are any dead cells to indicate any cancer before chem
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