Neoadjuvant TCHP - Post Results Here
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I started my 6 rounds of TCHP regimen on April 14, 2016. I had round 5 today. I have had a very good response to this treatment. My 5+cm tumor was almost impossible to find by touch after the 1st round!! My biggest SE have been diarrhea and heartburn. No nausea at all (thank goodness) Chemo, for me, has not been as bad as I thought it would be. Not saying it has been fun but I had visions of sleeping on the bathroom floor or my head buried in the toilet for hours and that hasn't happened (sitting on the toilet for extended periods is another story).
Surgery hasn't been scheduled but will probably happen the beginning of September followed by radiation and additional Herceptin through April 2017.
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TRB - way to go!!! Like you, I had no nausea but lots of diarrhea. I didn't have a pCR so I'm glad to hear your tumor is considerably smaller. One more!!! Hang in there.
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Good Morning. I had 6 rounds of TCHP. My tumor grew like crazy after biopsy. Started at 2.5cm and grew to at least 5cm in the month between biopsy and the start of chemo. I could feel tumor shrinking within days of the first treatment. The Taxotere was decreased to half dose starting at round 4 due to neuropathy and starting hand and foot syndrome. I kept asking for Taxotere to be increased again, but the Doctor would not do it. I had to have blood transfusion after round 5 as blood counts just could not recover. I put the blood transfusion off for 2 weeks in hopes that I could get blood counts back up. I felt horrible with pounding heart and shortness of breath. After I finally got the blood, I felt soooo much better and of course realized I should have agreed to it right away. I had terrible oral trush after every treatment. I was tested for IGG levels and found to be low so was started on IVIG monthly.
I tried to work some part time and did manage to work a few days over the last six months. There is no way I could have worked full time. I know some people have worked full time thru all of this and must say you gotta be one tough cookie!
I had follow up mammogram and ultrasound ordered after 6th TCHP. I argued with the tech because she did not do the ultrasound that was ordered. I kept telling her you have to do it, my Doctor ordered it! Finally she had the Doctor there come in to talk to me. He said; we cannot do the ultrasound because there is nothing there on the mammogram!
Had surgery with bilateral mastectomy and tissue expander placement on June 15th and went home the next day. The nurse from the cancer center in the Hospital had posted a sign in my room that said "YOu are a breast cancer surviver! Wow! I had drains removed after 2 weeks and that was such a relief! Pathology report showed only a scar where the tumor had been in my breast, no cancer and no scarring in the 2 lymph nodes taken. Complete Response!
I continue with the Herceptin and Perjeta for the rest of the year. I was referred to a cardiologist from the beginning and have ECHO with strain every 3 months. The cardiologist trained at Cleveland Clinic and brought the Herceptin Protocol to the Dallas , Ft. Worth area. This Protocol involves adding certain medications if the Herceptin starts to effect heart function and will allow me to continue Herceptin rather than having to stop it. I dont know what the medication is as so far I have not needed it because heart function has not shown to be impaired.
I will start radiation treatment for 6 to 7 weeks the first week of Aug. I was hoping to avoid that but it was recommended due to the size of the original tumor and the rapid growth. My plastic surgeon is wonderful and is doing my tissue expander fills super fast to have completed before radiation planning next week. She has also recommended Bio oil for scars, Aquaphor and wants me to ask RO about Radioplex RX. Is anyone familiar with Radioplex? Really nervous about radiation.
This has been such a roller coaster ride! I have had wonderful Doctors and Nurses on my team and a wonderful husband and family! Very blessed! Sorry for long post. Just started thinking about this great group and how it has been such a blessing to me to be able to come here and read others experiences and just to know that I wasn't alone. Even with great family support the only people that truly understand how you feel are those going thru the same thing. So thankful for this group! Gentle hugs and happy thoughts to all and have a wonderful day!
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Mena,
That's so great! Congratulations on the PCR. I am also on Herceptin (over a year now), and so far no problem with my heart. Hope it continues to work out for you.
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Hi ladies,
I learned this week that I had PCR for the tumor and axillary lymph nodes removed on the 5th! I still have Herceptin until February and I meet with the rads onco next week to talk about whether he recommends rads. I guess I'm still in limbo as to whether or not to do it
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Hi everyone,
For those of you who had NCT and a pCR, are you doing rads? Why/why not? Thanks!
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Asher what is NCT? I didn't do TCHP (had THP then AC) - but I am triple positive and had pCR and I am doing rads. It was initially in my lymph nodes, and I want no regrets down the road.
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Hi asher,
I had neoadjuvant chemo and had pcr. I did 33 radiation treatments. Like fighter girl, mine had spread to the lymph nodes. I have two kids (11 and 15 when I was diagnosed) and I wanted to do everything I could to be sure I was here for them for many years to come. I know if I skipped that and it came back I would never forgive myself. I know there were risks to radiation but I felt I would at least know I had tried. Good luck with your decision.
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Fighter & Sher-
Thanks so much for your responses. I think I've decided to go ahead and do it. I had a moment where I was talking to the plastic surgeon and he brought up some points I hadn't considered regarding rads, like chronic pain and the inability to complete reconstruction because of the pain. After reading your posts and journal articles, I just feel like I need to knock my risk down as much as possible despite the potential SE. Many thanks
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Asher,
I also had a pcr with TCHP. I had two nodes that were positive at diagnosis and clear at time of mastectomy. I am at MSK and did rads. The doctors recommended it because I was HER2 positive and it is obviously more aggressive. I did the rads with tissue expanders in place and now have implants. My only other option was the LAT flap and I wanted to take a chance with implants first. So far so good
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Hi all, posting for the first time. Had a lumpectomy done in Dec 15 but due to clear margins and clear CT had thought to opt out of chemo & rads. 3 math ultrasound in March 16 showed a new tumor 2 cm in my auxillary lymph node so I started chemo. Just finished TCP on 21 July, herceptin till April 17 but my ct scan came back clear again! (YAY! ) onco wants me to do 20 rounds of rads to breast (right luckily) and regional lymph nodes too. Am concerned abt lymphedema and effects of radiation to lymph nodes. Anyone have any similar experience to share?
Am er+/pr+, her2+
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Quraine I had chemo, surgery then rads on the left side (two lymph nodes were removed during surgery). Rads covered from just below the breast area to just above, including about half the armpit. I have had no issues with lymphedema at all. That arm pit doesn't grow any hair anymore in the radiated area (yay?) and I don't sweat as much there, but other than that things seem fine.
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Currently undergoing rads on my left side (I've done 21/28) had 12 nodes removed total. Some swelling underarm happening now but nothing too bad. It is turning a little pink but considering I've gone this long I can't complain. I have had cording issues right after both surgeries, however.
I am getting the supraclavicular nodes near my neck radiated, and I think it is causing a stiff neck. The RO says no way, but the coincidence is too much. I don't believe them. There are lots of nodes in the neck up to the face. Those little buggers are getting affected.
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Thanks for the replies cassiecat & fightergirl711! Been buidling the courage to go thru.. almost there ☺
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just getting started on chemo and targeted therapy and want to thank all of you for sharing your stories!!!
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Hello everyone. It's been a year since I had a lumpectomy and 3 nodes removed (I had PCR). Now today the doctor feels a slightly swollen node that she thinks is most likely seroma (fluid) from the surgery left over. Anyone experience this an entire year past surgery & radiation? So, now I go for an ultrasound Wednesday. I have had no problems with lymphedema but I have been using my arms a lot lately, doing more lifting than I should have maybe, so I am hoping that's all it is. Otherwise all is well
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TexasToast - hopefully it is just a seroma. I think an ultrasound is a great first step. Let us know.
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Had the ultrasound today and all is well, thankfully, nothing abnormal
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Texas Toast - that's great news
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TexasToast - great news. Good to hear.
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i was diagnosed january 8, 2016 with stage 3, her2 pos, er/pr neg. spent one month intensively researching, traveling for second opinions, radically changing diet and lifestyle, and decided on TCHP which began feb 4. i had 6 rounds - last round may 19. chemo was rough - as much emotionally as physically, but i continued a very full life of parenting my loves (ages 3, 4 and 15 at time of diagnosis), living and loving life with amazing friends and family.
my breast MRI on june 6 (following chemo) showed "complete response" and no evidence of any residual disease.
i then grappled hard, sought 2nd opinions and ultimately trusted my deep gut instinct and opted for a lumpectomy, which i had on july 15. prior to treatment, biopsy and MRI showed extensive lymph node involvement. surgeon removed portion of breast and 12 lymph nodes - not a trace of cancer in any!! hallelujah.
next ... radiation. more grappling and searching and difficult-decision making. ultimately, all providers on my team recommended rads due to extensive lymph involvement and possibly inflammatory features, so ... i am currently doing radiation. friday was #17 of 33.
oh, herceptin!! ** i completed 7 of the recommended 12 months ... my last 2 infusions produced agonizing heart issues. nothing structural, per the echocardiogram, but terrifying palpitations and aching for several days following the last 2 infusions. my brilliant and beloved integrated oncologist noted that the half life of herceptin is up to 28 days; my infusions every 21 ways and subsequent side effects indicated i was likely getting *too much; that the trough had been maxed and my body was clearly sending messages of over-dose. so, i have stopped at least through radiation and will revisit when done. the latest large scale study on herceptin in 2013 showed a difference of just 2 percentage points in disease-free survival taking 6 mos vs 12 mos.
blessings and best to each of you precious ladies!
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Hi everyone. I believe this is my first post, but I've been lurking since my diagnosis of triple positive IDC stage IIIB in March 2016. I've learned so much from all of your posts -- thank you so much for sharing your stories and knowledge.
Before chemo, I had 2 tumors in my right breast (~7 cm for one, ~4 cm for the other), and around 5 affected lymph nodes per my PET scan and breast MRI, although only 1 was palpable. One of the breast tumors was close to the skin, so they performed a skin biopsy which was positive. I was 39 years old when diagnosed, and had a regular check-up 3 months prior to diagnosis and the clinical exam by my doctor was normal -- she suggested that I could wait to start doing mammograms until I was 45, based on the new-ish guidelines and no family history. I know many people say this, but my tumor seemed to appear out of nowhere and seemed to grow fast (it was an aggressive tumor -- grade 3). My breasts were rather large (38DD) -- they never shrank after nursing my 2 kids.
I completed 6 neoadjuvant TCHP sessions between April-July 2016. My oncologist noticed my tumors shrinking right away, per her clinical exam. After session 4, I had an ultrasound performed that showed no evidence of tumors. I had a bilateral mastectomy in August 2016 (prophylactic on the left side). I was so hopeful that I would get PCR, but no such luck. The larger tumor showed a lot of treatment effect and shrunk to 4 cm (but was like "swiss cheese" according to my doctor); the smaller tumor shrank to 1 cm; and cancer cells were found in 3 lymph nodes out of 25. I opted for the bilateral mastectomy because of my age (didn't want to have to do screening for the rest of my *hopefully long* life), and the fact that it would be hard to get symmetry given my breast size. Lumpectomy and nipple-sparing were never an option since I had the positive skin biopsy.
I've been lucky through this whole process. I'm very happy with my care team; I've been able to continue working (a great distraction!); and my friends and family have been so amazing. I felt super icky during chemo, but got through it. Mastectomy recovery has been going well for me. I start radiation next week, and then after that I'll start tamoxifen (although am considering ovary removal and AIs). I'm continuing Herceptin every 3 weeks through March 2017. Planning on doing the DIEP flap reconstruction in the spring 2017. For me, by far, the emotional part of this journey has been the hardest. I want to be around for my young kids (ages 3 & 6 at diagnosis) for as long as possible.
Best wishes to everyone, and again, thank you for sharing your experiences and knowledge.
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Hi everyone - just wanted to post some encouragement for those undergoing TCHP.
I found the lump in my breast myself this May and went to the gynecologist, who sent me for a mammogram. the diagnosis was shocking since I'm only 30 with no family history. After just 1 treatment of TCHP, the tumor shrunk significantly. After the second, we couldn't feel anything anymore. I just had my final MRI scans after my 5th treatment, and they were completely clean - no evidence of disease! I still need to go in for surgery and get the final pathology report and take Herceptin for the remainder of a year, but my MO is confident I've kicked this!
It's been a tough road - I was hospitalized twice, got 3 infections, have battled nasty thrush, severe exhaustion and joint/muscle pain. The pain and exhaustion got so bad this round that my MO decided to not give me the 6th and final chemo and only give me the HP, given my MRI results.
I truly think it's been the Herceptin and Perjeta working their magic and melting all of the cancer away. TCHP can be a rough regimen, but the results have been worth it!!!
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I'm grateful for TCHP as well. Yes, it's utter hell going through it. I was hospitalized between 2&3. Had to go for fluid infusions every other day after chemo and spent a lot of time in bed. At times I felt like I couldn't keep going and had to stop for 2 months between 5&6. But I eventually made it through, learned that I was stronger than I ever thought and also had a complete response with no detectable cancer in the pathology from surgery. I'm just finishing up rads, 3 more boosts and then just Herceptin every 3 weeks till Feb '17. It's been a long year, but all in all I'm justthankful to be cancer free.
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i was diagnosed january 8, 2016 ... sought 2nd and 3rd opinions and started TCHP on Feb 4 ... last treatment May 19. there were certainly some very hard dark days, and i didn't feel great physically but generally was able to still very much be a part of life and it is busy - 3 kiddos (including boys ages 3 & 4!) ... such celebration when chemo ended and then my follow up MRI showed "complete response" to neoadjuvant chemo, no residual disease! More research, counsel, 3rd opinions, prayers, intuition and finally a decision about surgery - lumpectomy, July 15. removal of 12 nodes and NO trace of cancer in breast or lymph tissue! GLORY! I just completed 33 radiation treatments last week and also discontinued herceptin after 7 months. i feel healthy, strong and open to the beautiful future ahead! working closely with my integrated oncologist on lifestyle choices that support ongoing healing! i share my heart & my story at www.home2learn.wordpress.com.
gentle hugs!
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Wow, EmlywithHope, you had a great response to TCHP. That's awesome news! Congrats to the rest of you who got to PCR. TCHP was not as awful as I had expected, but I'm still dealing with some neuropathy in the fingers and feet. Acupuncture is helping though and my right foot finally feels "normal." Hugs to you all.
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I also just started 6 cycles of adjuvant TCHP + Herceptin for a year. The invasive part of my cancer was unfortunately also found after my mastectomy/recon surgery. Insurance is covering it, but I am in Europe.
NCCN guidleines in the US have recently been updated and now recommend adjuvant TCHP in some cases. The results of the adjuvant TCHP clinical trial APHINITY will be released next year I think and will hopefully back the addition of Perjeta in the adjuvant setting.
I had my first TCHP treatment yesterday. I have a VITAL-port implanted in my forearm which worked well. They were very careful during the Taxotere infusion and as time was running out they gave me Herceptin as a subcutaneous injection instead via infusion. No allergic reactions! I iced my hands and feet during Taxotere and Cabopatin and also sucked on ice cubes to cool my tongue. Cryotherapy worked very well during my first AC+T chemo 3 years ago as I did not loose my taste and I also had no issues with neuropathy in my hands and toes.
I greatly regret not having opted for a bilateral mastectomy at the time of my first diagnosis... At that time I was hesitant to also remove my second breast and finally decided to keep it. Removing it would have saved me this second chemo as I had a new primary develop just 3 1/2 years later. Booooo.
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I am somewhat concerned.......Most of you have had TCHP prior to surgery. I was diagnosed with BC in Dec 2002 Lumpectomy, lymph node dissection and radiation along with Hormone inhib due to ER + status....also had total hysterectomy at that time. Flash forward:
Regular yearly MRI on 11/07/16....they see something...Mammogram and sonogram confirm. Core biopsy on 11/11/16 confirms invasive ER- PR- HER +++. I spent a horrible ten days trying to get a surgeon to return my call. Finally decided to call Moffitt in Tampa even though it is 6.5 hours away. Since the original biopsy estimated the growth to be about 1 cm my BS decided to complete surgery first and then do chemo/ Due to holiday I was able to have a BMX on 12/07/16 but no reconstruction due to ER time availability. This is where the game changer came in -- the mass was actually at least 6cm with extensive lymphatic/vascular invasion. One lonely lymph node was found and it was clean.
Now they are going to do six rounds of TCHP then a year of just Herceptin. Still waiting on them to decide when this will start. Of course I want it to start yesterday but it is looking more like the second week of January. I am about ready to scream due to all of the anxiety
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Cindyanne - Most of us had TCHP before surgery as that is is the most common protocol, but that doesn't mean that you won't get stellar results! My tumor shrunk by 1/2 after the first treatment and the Dr could not find it (manually) after the 2nd. Try to enjoy your holiday and not stress too much about getting started. It'll work it's magic once you do.
On a side, I think that ALL medical personnel needs to realize the stress their patients are put under by the shear amount of time they are made to wait for results. Maybe they need to add a class at Medical school!!
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Thank you BeachBabyK, I agree about the stress. I have not even started Chemo and my hair is falling out--I think because the stress is soooo much.
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