Neoadjuvant TCHP - Post Results Here
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april25 - I had yearly ultrasounds of my axilla and clavicular nodes on both sides. I never had mammograms as I've had a mastectomy. My internal mammary nodes were never examined via the ultrasounds, and it's not the protocol anyway. When time came for my ultrasound early this year, I had an enlarged infraclavicular node which then prompted a biopsy and further scans. I could not feel any lumps as these lymph nodes are too deep. I also felt well. In hindsight, the disease could have been caught earlier if I had yearly CT scans, but because I was stage 1 this wasn't warranted. I had 6cm and 4cm on my right and left respectively, and this was mostly soft tissue disease on top of the lymphadenopathy. Apparently, I'm a rare case as recurrent breast cancer usually spreads to organs and bones, whereas mine was very contained around the chest nodes.
It's so hard to know what the right thing is. Like you, I also found my original breast lump through self examination. I then had a mammogram for the first time. The lump couldn't be seen at all because I had very dense breasts. It was seen only under ultrasound. I suspect you are much the same, meaning your lump is not necessarily fast growing, just that any lumps which have formed are hard to see. This is pretty common in younger women. I mostly think that all the power comes from being in tune with your body and taking swift action when something feels wrong. Keep up with the self examinations, and if I were in your shoes, I would have regular ultrasounds. I would not rely on mammograms alone. Best of luck!
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Ann, I'm so sorry for your results. My heart goes out to you. Instead of Herceptin, is it possible to get TDM1? I'm asking specifically because if I have another flare up, this therapy is next on the cards. I'd be interested to know if it's safe to administer for brain mets.
Wishing you the very best.
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I finished TCHP 3 weeks ago. Yesterday I went for an MRI. when I went for my Herceptin today, the nurse practitioner pulled up my MRI report. The MRI could not find anything in my breast or lymph nodes! The lump wasn't palpable after my second treatment so I was hoping this would be the result. Next up surgery on 12/15.
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Calcon -- Thanks for your explanation. Crazy stuff! No fun at all knowing you've got something unusual going on. I really wish they'd figure out some better ways to screen for this stuff!
I'm pretty sure I have dense breast tissue... but some people mention that to me and others just shrug and say it's dense but normal enough! Some people say to push for extra/different scanning methods, others say that u/s don't work unless they pinpoint a problem area first through mammograms! The whole thing confuses me... but I'd really prefer to have more than just a mammogram because I'd been having those yearly and they didn't catch my tumor! I'd be so frustrated in your place, to find a 6 cm tumor was growing somewhere and they hadn't detected it... But I guess it happens all the time, even if we are getting all the typical screenings! agh.
Heh... I'm not all that "younger"... late '50s...I probably will have dense tissue forever... they are small-ish but pretty solid!
I'll definitely push for the ultrasounds. Thanks!
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Surgery went well on Monday. I'm sorry it took my a bit to get online... I had Facebook while in hospital and was able to post to a couple of you, but couldn't get to the BSO site on my phone. I was trying my best to follow doctors orders and rest (hard for me!) while in hospital. I was up and walking around Monday night after surgery, and I took the meds they gave me in hospital as they made me do it... However, it was fine and it counteracted and got ahead of any pain twinges that may have wanted to start.
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JerseyGirl22 -- Good to hear you are at least up and about and not in pain. I hope all went well and you recover quickly!
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Jersey- so happy you have this in your rear view mirror. Try to take it easy, I know it's hard. Just rest and stay on top of pain. Do you have 4 drains? They are annoying but help with recovery. Prayers for healing and speedy recovery. Let us know how you are. I think today is my last Herceptin.!!!! Yes!
Patty
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Thanks everyone... still feeling good. Doing my best to rest and not do too much. Patty, I have 2 drains, so it's not too terribly bad...one drain is draining really good and already changed color... the other is very little drainage, but consistent, output and is still red... trying to be patient... Very blessed that one of my best friends in a doctor and is here taking care of me for a few days....
Warrior on!
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Jersey- you sound like you are doing amazingly well. Good for you!! Having a doctor to help is a bonus too. The drains are annoying but necessary. Mine were taken out one at 10 days and the last at 2 weeks. The only problem I had was extra fluid behind the TE that didn't absorb. It made my breast uncomfortable. It was drained once and seems to be absorbing better now. I had a fill yesterday and my VERY LAST HERCEPTIN! Yea the nurses were playing music , dancing and blowing bubbles. It was kind of surreal. Keep recovering day by day it's better. I think everyone has a different pain threshold so I took pain Meds for a month. Some are off in a week. Just listen to your body. Hugs To all!
Patty
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Thanks PMR53, I am very blessed that one of my dearest friends is a doctor (lives in Michigan, but came for a few days to be with me), and another is an RN/NP ER nurse who lives close by, and she comes over, too... I couldn't ask for better care. I'm thinking they may remove one drain by the end of the week, if the output continues to slow. The other is still dark red, and the visiting nurse said it was normal. It has always had very little output, so they think my body is absorbing it... we'll see.
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PMR53 -- Congrats on the last Herceptin! Crazy year of treatment, right? Funny that the nurses were dancing and blowing bubbles. Mine were low-key... probably because we were all sort of surprised when the last one crept up!
JerseyGirl22 -- So good you have such support from friends! It sounds as if you're healing well. That's all good!
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Hi all - I know that this is a neoadjuvant TCHP group but my situation is a little unusual in that we only found I had invasive cancer after my mastectomy and so I started chemo after surgery. I have finished 4 out of 6 chemo sessions but the plan is to continue herceptin for the full year. Today we asked if there would be a benefit to continuing perjeta for a full year also, but my doctor thinks it is unlikely that insurance would pay for it. She also notes that an extended course of Perjeta has not been shown to have a benefit.
We are not super rich but if this is something that can prolong my life and allow me to watch my kids to grow up, we may explore the option of paying for it ourselves.
Do any of you have experience with staying on Herceptin and Projeta only for year after chemo? Also, I have read that Projeta can cause hair loss. I had hoped that my hair loss days would be behind me after completing "real" chemo.
Any thoughts on this?
Thank you!
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SFmama,
I will finish up my year of Herceptin and Perjeta on January 15. It has been very tolerable. The only side effects I have had are some mouth sores and my face has broken out quite a bit. My hair started growing after I finished the taxotere and carboplatin. It is now about three inches long! I had a complete response so I am very grateful to have had this combo. Every patient and situation is different so it may be best to follow the advice of your doctor. I know Perjeta is only indicated for neoadjuvant because there are studies to support it. I always favor treatment that has data to back it up
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Raleighgirl,
Somehow my doctor was able to get permission from my insurance company for me to do perjeta after surgery in combination with with my chemo and herceptin because she convinced that them I would have been eligible for it pre-surgery if we had known my diagnosia at that time. Pre-surgery we only thought I had DCIS but surgical pathology revealed Tyle 2A hormone negative, HER2 positive invasive cancer,
To me it seems like there could be a benefit of a year of projeta, probably no worse side effects than I have already experienced, and it could possibly help me. I just need to find out if anyone else has done this.
Thank you!
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like SFMama, someone in my cancer group has surgery first where she insisted on a mastectomy which revealed disease throughout and in her axilla and bumped her up to stage 3. Since Perjeta was being offered as a dual blockade against HER2 before surgery this put her at a disadvantage. In all my reading, having that dual blockade meant a better outcome. She asked her doc about it and they were able to convince her insurance to let her do the regular course of 6 doses during the year she was on Herceptin.
Separately someone in my group took Perjeta for the whole year with her Herceptin. She tolerated it okay but from my single, 7th dose of just Perjeta and Herceptin I felt a lot more fluish that round than any other with Herceptin alone.
The anti-HER2 targeted therapies do allow your hair to grow but it feels more fur like and weird. It wasn't until I stopped Herceptin that my hair texture improved significantly.
The earliest any studies of neoadjuvant TCHP will be available is summer 2016 I have heard. Until then it is just an experiment -- one which I was happy to participate in, even without a clinical trial. The results from our group I posted a while back and everyone experienced disease diminishment. We see with standard therapy some patterns of subtypes emerging though, those who get a PCR with six rounds of TCHP (HER2+/HR- and triple positive) and those who didn't quite get there (HER2+/HR- and triple positive). In studies they lump us together quite often into HER+ but I believe they are missing a lot about our disease variations -- at the very least those who are HR+ should be separated out from those who are HR-, anything else smacks of laziness to me.
I've been doing more research into those who develop resistance and I will probably post soon to this forum when I'm finished. I think there is more to understand about HER2 disease progression, therapy resistance, and affinity for different types of mets
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Has anyone here had to change one of the chemos they took instead of the TCHP? I have 2 rounds completed of TCHP, although the second round only had Taxotere at a half dose. My MO has decided that I cannot take any more Taxotere due to very violent diarrhea and even at the half dose it started getting bad on day 6+7. So he wants to change me to Abraxane weekly instead. So my protocol will be Herceptin and Abraxane weekly until my next 4 "rounds" are complete, and every third week continue the Carboplatin and Perjeta. I'm just concerned about whether this is a effective as Taxotere. I know it hasn't got the studies yet but I would rather grit it out for the next 12 weeks and know my outcome could be so good than take a risk on the outcome with Abraxane. He refuses to let me do that.... so I just thought I'd ask here if anyone has any experience with Abraxane, and especially with this neoadjuvant plan.
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Grace - I am so sorry you are so sick from Taxotere. I did 4 rounds of TCHP. I was supposed to do 6. My body had had enough at 4. It did work though. After MX no invasive left. I have never heard of abraxane. I guess I would ask the question. What are the similarities between taxotere and Abraxane. Each chemo had a different job of killing the cells in a specific way of the cell cycle. Does that make sense?
Maybe someone will know more. Hugs to you. We have very similar diagnosis. I was Triple positive. No nodes and mine was 5cm. I had chemo then Uni MX.. Hugs my dear.
PMR53
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Hi Grace -
I have only heard mention of Abraxane by stage 4 patients and Im unfamiliar with its use in this cI text.
Someone in my chemo group ended up hospitalized after the first two doses of TCHP and her doc switched he two weekly Taxol treatment instead of the Docetaxol and she too had a PCR. I would want to go that way before trying anything ekse.
There is this great explanation of the differences between the two taxanes here:
https://community.breastcancer.org/forum/23/topics...
I can find out where my friend was treated if you like. Maybe your doc can consult with hers. She was treated in the Raleigh area.
PS - I have learned from the stage 4 gals to ask for documentation of any changes to protocol. Tell your doc you want to see the medical articles that show that Abraxane is equally effective in this situation.
- Ann
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Thank you Ann and PMR53! I have done a little more looking and it seems that Abraxane, Taxol and Taxotere are all Taxanes and therefore work much the same way. The chemo agent is the same in taxol and abraxane - difference is delivery method - abraxane is delivered via nanoparticle albumin, vs a solvent agent for Taxol. Because of this it seems that Abraxane has fewer side effects. Most of what I have read about Abraxane is in stage 4 BC but that doesn't mean it can't work in this situation as well I guess. My hubby asked a Dr friend at church this morning what he thought about this switch and he said for my case he would be very comfortable with that switch. So I guess even though the trials were not conducted with Abraxane and therefore I can't find much info on it's use for Neoadjuvant TCHP T replacement, it is still a viable option with fewer side effects. Keeping my fingers crossed and praying hard that I won't react as much to this one as I did the Taxotere. I just want to get this over with and move on to surgery. Thanks for your replies!
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I had reduced taxotere after my loading dose because of severe diarrhea (as in getting hospitalized for dehydration first two cycles--and getting home IV drips for all cycles after that). The reduced taxotere didn't seem to make a huge difference. I'm surprised my MO just didn't go ahead and put it back up, but oh, well. I did NOT have PCR.
I did not get Perjeta with my continued infusions of Herceptin. I have no idea what the reason was for that, either way. It wasn't due to insurance. I thought it was probably because Perjeta is mostly approved for neoadjuvent, and that's what I got...???
Oh, well! Too late to ask about it now!!!
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http://www.breastcancer.org/research-news/survival...
This article makes me happy 92% survival rate after 10 years and this was even before perjeta was added knti the mix!!
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Herceptin was such a huge breakthrough.
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Hello April! I too am surprised your MO left you at a reduced dose of Taxotere, although that is what my MO did for one week as we were eliminating the one of the four that made me have such severe diarrhea. If I had not continued to have diarrhea even at the reduced dose he might have let me continue on that reduced dose for all I know. But like you, even at half dose I still had the D so he just decided on the weekly Abaxane. I am doing MUCH better with it! No D, and not all that bad with other side effects either. Very tolerable! I am feeling a definite reduction and softening of the tumor but unfortunately it is still pretty large and I'm praying this last half of treatment will give me a PCR but I'm not so sure I will. I too will not get Perjeta after the 6 treatments. I feel within a year or two Perjeta will be approved for all HER2 cases but right now there are only certain circumstances that qualify for Adjuvent treatment. I hope that will happen soon so we can take advantage of it perhaps along with the Herceptin after surgery.
I have not had my 3 month echo yet to see if I can continue Herceptin, but hopefully that will be fine and I can continue on with that. I'm on a weekly dose for 52 weeks if my heart can handle it. It sure would be nice if some Perjeta could continue then but oh well.
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thanks for posting stephmoen! What great news
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Thank you Steph for posting this! Positive news!
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Thanks for sharing that Steph! Great to read. I'm about 17 months post-diagnosis, and so far, so good.
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Just thought I'd stop in here to say that I just got my port removed!
And my hair is around 3" long.
I feel pretty much back to normal aside from a bit of an ache in my bad arm... which might be minor LE or might be rads affecting nerves... I should get it checked out but isn't bothering me enough yet... I'll have to see.
The Anastrozole... It's OK so far. I think it's making my joints a bit stiff, but it's not terrible.
I'm about 15 months post-DX.
I hope all is well with everyone!
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CongratApril25 on getting your port removed! That is awesome.
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April glad you're keeping in touch. I sort of promised my new MO that I'd have my port removed in June if I could have a PET/CT first. Since I have LE, it comforts me having the port there for blood draws & testing. And of course since I had a recurrence, I'm skittish about taking it out.
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great news April! I hVe only 3 more herceptins to go crazy to think of all I have been through and hoping I got to the end seeing your posts helped me through! I am happy I am finally coming to the end as wel
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