Neoadjuvant TCHP - Post Results Here
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Stephmoen - i was interested in ovarian suppression during chemo to help protect my ovaries. I was not HR+. Before treatment I asked my MO and gynecologist about using Lupron, a GnRH blocking med. i was dissuaded. Some weeks later early reports came out about studies using Zoladex during chmo for ovarian suppression came out and my MO agreed. I had one 30-day injection (wears off over 3-months but biggest dosecovers 30-days) that covered my final two rounds of TCHP.
It was not an easy drug to take and it caused a major dip in my cogniyive function at the time, but I seem to have recovered. My ovaries came back online and I had my first period six months after the shot.
From what I have heard, estrogen deprivation, even for HER2+/HR- patients can have a beneficial affect on the cancer cells. For ER+ patients with HER2+ I would recommend persuing the additional ovarian suppression during treatment, or even during the year of Herceptin. If there are cancer cells left you want them to starve of what fuels them.
HTH
Ann
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I had my post treatment follow-up this week (mamogram last week, six months after rads completion). Everything is cool but I still hate my RO (thick as a brick wall) and my lovely MO is retiring and moving to the East Coast. My GP is absolutely wonderful so I'm going to switch my post-care monitoring to him, since I am working with a naturopathic oncologist ongoing. This will get me off the cancer conveyor belt and working with a team that is more positive and doesnt treat me like a cancer patient which I hate.
In talking to my MO this week about the TCHP protocol, I reminded him of how I was climbing the walls trying to find any studies on PubMed of outcomes. He said TCH was developed by UCLA and when they had great results with Perjeta in the metastatic population it was just added to the protocol. In the metastatic population trials it was used with AC or TAC from what I can tell.
Studies of TCHP have started for earlier stage disease but results won't come for some time. The results you post here are clinically relevant for those of us on this protocol. I imagine that it will take about five years before they report on 5-year outcomes, factoring some time to analyze the data. The earliest anyone on TCHP would have finished their year of Herceptin would have been October 2014.
It is kind of mind-blowing and since non-metastatic disease is different than earlier disease a pCR result might be more durable than previously supposed. We will just have to wait and see.
With love,
Ann
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Agness - I did TCHP starting February of 2013. I was diverted by four months of AC treatment after the first batch of chemo & surgery since I didn't have a pCR - otherwise I would have finished my year of Herceptin in the spring of 2014. Sounds like maybe I was one of the first on the TCHP protocol.
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Hi, I started TCHP on june 3 and feel so tired today. Got nausea feeling and cold sweat this morning while in the bathroom and I thought I will faint that time. Had couple crackers and some water and felt a bit better. Would like to ask some snack suggestions: is unsalted mixed nuts, walnuts good for snack? Im her2positive. Can I drink almond milk? I will listen to all of you said keep drinking enough fluid to keep me going. Thanks for all the good ideas!
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Some have diarrhea issues, some constipation, some both. My naturopathic oncologist told me to eat a simple diet during the first week, starting a day or two before my infusion. I lived on asian chicken ginger broth with greens, some chicken meat, sometimes potatoes and steamed spinach. I didn't lose my appetite but was so badly constipated the first week that eating less, and more simply, helped protect my gut.
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kh04, good luck on your journey of TCHP! It has great results, I hope you will have great results as many before you have! Recommendations: stay hydrated. Drink anything & everything you can. Eat anything & everything you can. You'll notice your taste buds will change making many founds taste like dirt & some foods taste amazing. If you're nauseas and lacking appetite no matter how terrible the food is, just eat it if that's all that appeals to you.. If you feel dehydrated or are puking get in the habit of asking your doctor to give you an IV of fluids 1-2 days after treatment. It really really helps. A week or so after treatment you may get diarrhea from hell.. Get Imodium to help combat that
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Jumping in late here. I have been really depressed but feel like I can talk. So I am doing THCP. I feel sick all the way till week 3. Just now getting the zaps. Have had hip pain lots of nausea dizzy, mood swings it goes on. HER2 triple pos stge IIIB multiple tumors scattered in right breast I had a mastectomy. I am not on the reconstruction road yet
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Hi jumbledbamboo, and welcome. So sorry you had to find your way here. I was getting pretty depressed for a while too, but I feel better these days. No recon yet for me either, but I may start interviewing surgeons this summer.
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Hello,
The last 2-3 weeks have been rough for me. A minor cold turned into a sinus infection and suspected viral meningitis. It takes a while to fully recover from chemo treatment. I think I have been pushing myself too hard..especially since the kids got out of school. My PCP is encouraging me to slow down, take medication for sleep, and for anxiety and depression. I know she's right, and I am trying to take her advice. I am napping during the day, taking Xanax when I feel like I need it, and considering an antidepressant. This part of cancer treatment is the most difficult by far. How do I go back to normal life? What is my normal life supposed to be like? Very difficult..
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Thank you for the advise, runningcell!
I fell much better today! Besides joint stiffness, just a bit lack of energy. Once a while feel my organs been pintched for a few second, I just take everything easy, but still do regular house work, just trying to keep life as normal as possible, I dont have any sleeping problems(yet), I found out that nap in the afternoon really gained my energy back.
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by the way, I never took nausea meds besides the nausea meds in the infusion. Funny part is I always feel hungry, very interesting on the foods. I think eating enough food to keep my belly full do keeps nausea away. I pray everyday during my treatment can be easy as possible and everyone on their treatment can go smoothly as well! I drank enzymes and vitamin b complex to keep up my energy and rinse my mouth with those drinks to keep the mouth sores away.
I have a question: any possible not loosing hair during treatment? I know it sounds silly but I never imagined I will go bald for months in my life. Haven't get a wig yet. Cause I still cant believe I have bc . Feels like a dream on some days when I feel good but when I get to see the docs and doing treatment dragged me back to reality that I do have bc. Ladies, stay strong!
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I have hair!!!! Thanks to cold caps. 💜
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As far as hair loss I had really gorgeous thick hair. I loved my hair(can you tell?) lol. But here I sit bald as a baby. I am ok with it. I have no idea why this is not fazing me as much as I thought it would. I have lots of scarves and 2 wigs. I like the scarves. It is too hot in texas for a wig!
My first few rounds of chemo I had bad bad diahrea but for now I alternate between no go and the other. Probiotics help so much. I eat the yogurt with cereal in it and eat the pills. I also have tons of heart burn.
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Jumbledbamboo: sorry to hear that u have heart burns. So far I dont have it and hope it doesn't appear. When I got dx, my friend got me some digestive enzymes with probiotic and very concentrated original flavoed aloe juice, she said these will help me during chemo (to protect my digestive system and boost my immune system too). I started took them weeks before the chemo and so far so good. I told her I take whatever I can to help me because Im scared of any treatment and taking meds.
I thought the worst in the beginning just in case I wont be able to get off the bed during chemo and I have to arrange childcare for my children, but so far things seems going ok that Icould keep up with regular normal life. Thanks god!
I told my husband that Now I always feel hungry and love to eat and very enjoy of it. I said it feels like hungry feelings during pregnancy. And I rather it's true than get this bc.
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Hi. I take the neulasta shots. My blood count has not fallen below normal after 2 treatments. This last treatment did get to me a lot more and SE lasted longer. I had one day I questioned myself if I could do 2 more and all that is still to come. I too have D but it seems to be getting better. I am very fatigued most of the time. I am 65 years young and think that is a factor. I have lots of heartburn and take Pepcid. What are the probiotics that would be good to take? I had very sore mouth 1st treatment but not 2nd. Will see what 3rd brings. Woo woo. I experienced a bit of chemo-fog a couple times. Worst SE has been nausea, then fatigue. I never had a previous experience with cancer or even knew anyone so this is quite an eye opener. My prayers to all you. Thanks for sharing your journey. I find this very helpful.
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cchix49,
I had lots of trouble with heartburn too. I took Prilosec 2x daily to get through treatment. I am happy to say that things have really settled down in the gut! Chemo is tough..definitely the hardest thing you will face during your cancer treatment. Fatigue and nausea can be brutal. There's not much that can be done about fatigue, but your MO should have a few things in the arsenal for nausea. I had 2 anti-nausea meds and a patch. The combo definitely got me through my worst days.
You can do it! Rest and take good care of yourself. Keep us updated.
Amy
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So my Path says that my HER2 + is inconclusive! Original biopsy report was inconclusive, too, but the FISH was Positive. I wonder if this means I should have had slightly different treatment than TCHP? Too late now, I guess, but I still have a year of Herceptin ahead...
MO thought getting the Path after neoadjuvent chemo might have affected the results. He wasn't sure though...
Path says I'm very ER+, like 90% or so... I wonder if that makes a difference? I wonder if I shouldn't have had neoadjuvent chemo? Hmmm.
Too late now, though!
I'm being treated in west Los Angeles/Santa Monica... My MO is a UCLA guy, so I wasn't surprised he suggested the neoadjuvent TCHP protocol.
I don't think I need hormone suppression if I'm post-menopausal, right???
Over a month post chemo, I'm still having SEs... I had terrible D all through chemo--so much so that I had to be hospitalized twice and then went to 2 weeks 24hr IV drips to keep me hydrated. It didn't matter whether I ate or drank or not since it all went right through me! But as it was, I had an appetite, but food seemed like sand-paper and cardboard, and drinks weren't much better... So I would lose 10lbs each cycle, then could eat food for the few days just before and after an infusion and would gain 10lbs, then lose it again... which can't have been great. --Anyway-- I STILL have D now, and my stomach aches with heartburn and some gas. But I don't have to have IV drips since I think I'm eating and drinking enough...
My nails turned pale towards the moons during chemo but looked like they might stay put and not get worse, but now, over a month later, they look like they are starting to separate from the nailbed at the fingertips! Gah. There's something very creepy about possibly having nails fall off!
Hair loss, I didn't mind so much (mostly because other chemo SEs were such a pain). I didn't loose eyebrows and lashes until AFTER chemo (which was also disappointing!). They fell out and now they are very slowly growing in... have very, very short fuzz on my head and everywhere else... (I bought a nice human-hair wig right before I started chemo and I've been getting use out of it... I have a ton of scarves and caps now too.)
My leg muscles got weak from lack of exercise and chemo induced neuropathy during chemo, but I think it's coming back a bit... very slowly.
Aside from the mentioned SEs, I didn't have much of the other things: a bit of nausea only. I did have fatigue, but again, the other SEs were worse (D and dehydration), so I didn't worry about it. Dragging an IV around for weeks and not eating and getting anemia and low potassium and magnesium and some hits to kidney function (briefly) was worse!
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April
I am sorry your still having SE but they will get better! I am 12 weeks past TCHP and feel better everyday. I also had 2 surgeries. Because you are Estrogen positive you will most likely go on hormone suppression. The adrenal glands, fat cells and ovaries make estrogen. As far as your Her2 status I had Fish and IHC test. They were both Positive. I would ask why the IHC test was not done.
Hang in there!!! Are you taking Biotin for hair? Mine is growing! I am coloring it today in fact!
PMR53
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Thanks DaisyQ for the reply. I am so thankful for those site. I is so comforting to have people to talk to that know what it is like. Thanks.
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DaisyQ
how was your responds to tchp? I have a same type bc like yours. My mo told me I should see good respond in a few weeks. Which I already felt the size is getting smaller. I dont know its good or not? If it completely melted away at the end of the chemo, will there be possible any changes on the treatment plan? Avoid radiation or some what less damage procedure to the body? I think I felt some numbing/tiny warm feelings on my head skins, is it the sign that im going to loose my hair soon?... cant image that.
Im check this board daily now and love to see so many good advises here you all have.
Thanks everyone!
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kh04, I had a complete response to the chemo (yay!) and could feel the tumor shrinking within the first round of chemo, but it did not change my treatment plan. I still had an MX and then radiation. As for hair loss, mine started going somewhere around day 18 or so after my first chemo. I think I buzzed my hair short around 5 days after my second chemo.
Have you found the board for people starting chemo in June 2015? It can be helpful and comforting to find a group who is going through what you're going through at the same time. It was for me, anyway.
April, glad to know you've made it through chemo. I hope all of the SEs start subsiding for you sooner than later.
cchix49, my MO had me start taking Prilosec every day, and that really helped with my heartburn. Nothing else was helping, but that daily pill did the trick.
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Hello! I haven't been to this site in a while but I still like to periodically check in from time to time with good news. All women receiving TCHP should have some added confidence (and hopefully happiness) with the latest news regarding its efficacy. Check it out:
http://breastcancer-news.com/2015/06/07/genentech-...
Before this data was released, experts only knew that the TCHP regimen could increase the chance of a pCR (which they suspected had a positive impact on DFS and OS). Now it's very much looking like the addition of Perjeta has a big impact on reducing the overall chance of recurrence and survival regardless of achieving a pCR or not.
So stay the course, ladies, and know you're getting the very latest and greatest treatment for your specific type of BC. SE's definitely suck but I think Perjeta is worth it and continues to validate its hype as a "wonder drug."
God Bless.
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Does anyone know why after chemo, some of us continue with Herceptin only treatments to finish off the year, and others receive both Herceptin and Perjeta?
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ben50 - thanks for sharing.
Lori - my Mo offered continuing Herceptin & Perjeta. I'm guessing it was because I had a recurrence within two years after my BMX, but that's a guess only. I continued w/Herceptin but declined the addition of the Perjeta for the rest of the year based on listed possible side effects. It's hard not to second guess now if I did the right thing.
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thank you for posting that.. it gives me much hope when I'm feeling down that this is going to work and I will live to be a grandma some day.
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PMR53 -- I'm feeling a bit better even if some SEs are hanging in there... more energy and feeling a bit stronger.
At the first DX from the biopsy, they tested (not sure what test) for HER2, but it was inconclusive. Then they went with the FISH and it was Positive. I'm not sure if I got the IHC test or not... Should I ask about it? Does it matter now, that I've already had chemo and surgery? I'm set for radiation now... a rather LONG course of 35 sessions! I'm trusting the doctors to be prescribing the right thing... but who really knows? (They all saw the PATH, though...! No one mentioned the differences between it and my original DX.)
I wonder if my weak/inconclusive HER2 was what might have interfered with a complete response? Or maybe that's just the way it goes, that not all cancers react the same?
Oh... I THINK I'm getting some years of femara... that would be the estrogen suppressant part, right? Not sure when that starts... I'm just on Herceptin every three weeks for a year at this time... along with the rads, of course.
loriekg -- I'm just getting Herceptin alone for the year. I have no idea why no Perjeta. I thought maybe because it's more approved for neoadjuvent? but I really am totally guessing.
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Hi,
Loriekg, it is my understanding that the safety of Perjeta administered for greater than six cycles for early stage Her2+ positive breast cancer has not been established, and therefore not approved by the FDA. However, had I enrolled in one of the trials like for example TDM-1 (Kadcyla) I would have received Herceptin in conjunction with Perjeta for the year (assuming I would have ended up in that arm of the trial). The protocol might be different for later stage Her2+ breast cancer.
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re: continuing Perjeta - I was at a 'teaching hospital' but not on a trial - maybe that makes a difference too. Also I was ER/PR negative so there were not as many treatment options. However I've seen Perjeta offered for the year much more frequently lately.
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PMR53...ok, I started chemo just a week after you, and you have enough hair to color??!! Your hair must be growing at an amazing rate! LOL My new growth is maybe 1 or 2 mm's, and from a distance of three feet from the mirror, I still look totally bald. Did your hair start growing back before you were done with chemo? Wow--I am jealous!
--Lorie (running off to find Biotin)
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PMR53...ok, I started chemo just a week after you, and you have enough hair to color??!! Your hair must be growing at an amazing rate! LOL My new growth is maybe 1 or 2 mm's, and from a distance of three feet from the mirror, I still look totally bald. Did your hair start growing back before you were done with chemo? Wow--I am jealous!
--Lorie (running off to find Biotin)
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