Neoadjuvant TCHP - Post Results Here
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MZ - it's not just symptoms & treatments. It's a history of cancer back to Greece & Rome. If you google you can probably see one of the interviews about the documentary by Katie Couric with the producer Ken Burns and the author. Her cancer group bought the rights to make sure the story was told.
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Wow, very interesting. I'll check it out. thanks
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@loriekg @sugarcakes make sure you are asking for an iv of fluids when you go in for your nulesta shots. IT WILL BE A LIFE SAVOR! and don't be conservative, get as many bags of fluids as you need and stay at that infusion center until it closes if you have to. if you are low on potassium they can run an IV of that as well for you. if you are anything like me, those fluids were my only source of hydration during treatment so they are a life savor to prevent hospitalization.
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TexasToast -- I watched "Emperor of all Maladies." People had recommended the book to me, and I'd downloaded it but my reading has all be VERY light these days, so I haven't read it. Watching was no problem for me. Interesting about the history of Herceptin. I'd heard about it before, but nice to learn more about it.
The series was pretty positive, what with all the advances in treatment these days. It's good that we can benefit from it... and there's more hope in the future, which is all good.
The second part also featured the SO I will be having for my surgery, Dr. Giuliani, who pioneered SNBs (he was the one who had trained the doctor with breast cancer who had come to him for her surgery).
I really like all the doctors who have been overseeing my care. I'm going to them all even though they are an hour away from my home (in W. Los Angeles-- affiliated with UCLA, Cedars-Sinai, and St. John's) and I have to stay with my sister, because I trust them to do the best for me. It's very reassuring! (I had a worry that such doctors would be too in-demand and busy to really be the best for me, but they have all proved to be very careful and caring.)
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Did you ladies watch the lifetime movie Living Proof with Harry Connick Jr. the approval of Herceptin? It's available on iTunes and Amazon. I watched it the night I got my biopsy results. Started a little slow but was really good. I cried some and also got angry but felt really good and hopeful at the end of the movie. Started watching it at like 11pm thinking I wouldn't finish. The boyfriend and I stayed awake to finish it that night.
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hello I found out I have breast cancer at the age of 29 On match 17th, I have a 5 year old son and a 1 year old daughter. I learned Tuesday I'm her2 positive my heart instantly dropped when you google her2 positive all you read about is the increased chances for reoccurrence it's really had me depressed the last few days. I start chemo next week tch with herceptin and perjeta. I had an MRI which could not give them a clear view of my lymph nodes this is the most frustrating thing for me I need to know what stage I'm at they keep saying stage 1 but they don't actually know . They ordered the pet scan for Wednesday but it's all I can think about..I was just hoping for some advise
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Hi Stephmoen...I am glad you found this discussion board. I am sure you will hear this a bunch--but do stay off the internet when researching her2 stats! The information you find may be incorrect and outdated and do nothing but terrorize you needlessly. It feels like yesterday and I was at the same place you are now...not able to think about a single thing except my diagnosis and my overwhelming feelings of dread and doom! But...if you do your research here, you will find the her2 positive dx is NOT the dx it once was due to herceptin and perjeta. I've heard them called "the game changer" on here and from my breast surgeon and oncologist. I had my first chemo scheduled after my surgery for the port placement and sentinal node biopsy. MO told me that the results from my biopsy would not alter the treatment they'd set up for me. They would be using the chemo and targeted therapy (herceptin and perjeta) to mop up any stray cells whether they had spread or not.
Like you, I am doing the neoadjuvant chemo and after 3 treatments my tumor could not be manually detected.
Hugs!! --Lorie
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Stephmoen, Loriekg has said all I would say! I also was terrified when I was diagnosed her2+. All I kept seeing was AGGRESSIVE and my tumor seemingly appeared overnight at a whopping 4.5 cm AND it had spread to my lymph nodes. Since starting treatment and being on these boards and reading about studies specific to TCHP, I am actually thankful for my her2+ status! Before my 3rd infusion, I nor my MO could no longer feel my tumor. Read about about and consider watching the movie Living Proof with Harry Connick, Jr. You can find it on Amazon or ITunes. It is about the discovery and fight for testing and FDA approval of Herceptin. My boyfriend and I watched it the same day I got my biopsy results. It helped me feel better about my outlook.
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Done with 6th round of TCHP about a week ago, still tough with fatigue and diarrhea but pushing along. Kept doing acupuncture, yoga, vitamin e on eyes and eye drops, all the supplements alpha lipoic, B-6 etc. Nuropathy not too much of an issue but the dry cracked fingers and nails have been an issue, some poor sleep but manageable. Met with BS and PS and BMX with TE scheduled in a couple of weeks. No imaging during or post TCHP so won't know full pathology until surgery. Met with RO and radiation for sure even if there is a full response. Breast is still feeling soft and "normal". Good luck to everyone.
On another note MO mentioned the KATHERINE Trial, which is randomized Kadcyla (T-DM1) or Herceptain. Just seems like the toxicity of the Kadcyla is still tough and after TCHP might not want to do it.
Stephmoen - research on these boards, ask questions. It helps.
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larod825--if you are having a BMX and get a full response, do you know why they are recommending radiation? I knew they would for an LX but I thought with an MX you avoided radiation.
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Stephmoen, read what you can on this site. Others have already said it, but there are very good outlooks for those of us who find ourselves here. I did have a complete pathological response to TCHP and feel lucky.
Lorie, for me, radiation still was recommended (even with an MX) because I had one positive node.
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Stephmoen--Just adding my positives to the mix. I was super scared too. I'm sorry you are having to be here but you will find a lot of good support here too. I finished TCHP too. Full pathological response for me too. And I met a lady that volunteers in my chemo center two days ago. She is her2+ too. She's ten years out and going strong. It was great to meet someone face to face like that. Take care dear.
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Can some of you further along or finished with TCHP tell me around when you met with the BS and PS as well as when you met with the RO? I'm looking ahead. Also, I see some did not have imaging before surgery. Who did have imaging and which imaging was it? Oh, and what "chemo" did you have afther surgery. They had told me "easier chemo" and I am wondering if that means herceptinonly or might it be herceptin plus some actual chemo drug. Does the chemo and/or herceptin take place during radiation or start after radiation?
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Sugarcakes--I first saw BS surgeon for a consult clear back before I started chemo. This helped me get into their system early and she played a role in helping determine some of the decisions as we went along. I ended up with lumpectomy being a good choice or me, so no PS for me. I had my consult with RO two weeks after lumpectomy and started rads around ten days after that. There can sometimes be actual chemo prescribed after surgery if your biopsies come back with cancer cells. I was lucky. Mine came back with zero cells, not even dead ones. So I do continue with Herceptin every three weeks, but no other chemo drugs. I didn't do Herceptin the month of my surgery. Herceptin will more or less remain on schedule throughout all the other treatments. I had a couple of minor hiccups. One of them was a bad echo result, so I was given one month off of Herceptin. All is well again and I am back on track. Instead of finsihing in Sept. I finish in Oct. Does that help?
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Yes mombiezombie, that helps! I met with a BS early on for the biopsy and will meet with her again but I may also go to another BS for a 2nd opinion when the time comes. The current BS threw out LX and MX being possible options for me, but she was clearly in favor of MX. Considering my response so far, I think I want a LX. I did have two smaller satellite lesions that the BS believed to be cancerous. Maybe that's why she favored MX. I figured if I did LX, I might still need reconstruction afterwards. Oh, I have existing sub muscular breast implants. Another reason I figure I will be meeting with a PS also, even with a LX.
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There are definitely some factors that make an MO and a surgeon choose MX over LX. Remember me mentioning an MRI one week after chemo started? That was because the radiologist who did my first mammo and ultrasound and biopsies thought he saw a second mass behind my nipple area. And they thought some of my surface skin was being affected. The MRI helped rule out the second mass theory. Thank goodness. A surface skin biopsy was taken by my BS. Also negative. My tumor size also helped me qualify for LX. The last thing was to get genetic testing. If I had been positive there, it would have swayed the docs back to the idea of MX. I sat on pins and needles for a while as I waited for answers.
You asked about imaging after chemo, but before surgery. I forgot to address that. I had an MRI before surgery. They were excited by my results. Also, because I had no tumor to remove, they still had to remove a margin of tissue. So I had to go in an hour before my surgery to my radiology place to have a "wire" placed. They used stereotactic imagery to locate the original sight of my tumor (a marker had been placed during the first biopsy). The wire was placed in such a way as to outline for the surgeon what tissue needed to be taken. That part was not hard, but it was a little creepy and inconvenient. I had this wire sticking out of me and all I could wear was a loose jacket over my naked top half. I had to put on the jacket, get in the car and drive over to the outpatient surgery place and sit in the waiting room. Fortunately the two places were only minutes apart and the surgery center got me back to privacy and comfort really fast. They were great in fact.
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MonbieZ, did they remove tissue based on the original size of your tumor? Mine was rather large at 4.5cm. I did not have an MRI before treatment. I had a contrast CT scan and a bone scan, I think mainly to see if the cancer had spread further than the armpit lymph nodes. The BS let the MO decide which scans, but she as well as the radiologist that did the initial mammogram and US seemed to promote having an MRI done
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thank you for the advise it's very hopeful seeing that many of you have a complete response to this chemo therapy I am meeting with my oncologist this morning to go over the protocol for what's going to be happening next week once I start. One thing that makes me nervous is the fact I'm estrogen positive and some of you have said those who are don't have as good of a response to the chemo. My oncologist was so happy when she saw I was estrogen and progesterone positive I will address that issue today
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Stephmoen--MOs do tend to be happier when you test positive for more than one component. That part made me feel weird, but I guess they look at it that way because it gives them more options for what methods and drugs they can throw at you. If you are only her2+, there are fewer options and if you are triple negative, then there even fewer. Forgive me if I am stating things everyone already knows. I will add that the woman I mentioned earlier, the one who is 10 years out, was ER+ and her2+.
For anyone it helps to hear this, I have 4 personal friends near by, who were ER+, that have had complete response. One is one year out, one is three years out, one is five years out and one is 16 years out. One of them worried about the uterine cancer risk that tamoxifen can cause. She chose a preemptive strike for that and had a hysterectomy. Two friends chose to monitor only. The gal who is 16 years out did get uterine cancer not long after. It was detected and she recovered fully from that as well.
Sugarcakes--My tumor was only 2cm. They took a huge margin of tissue--basically, it was the size of the tumor, plus lots more--it even included a little bit below the breast. My ribs still ache from that. My tumor was low and deep--hard for them to even get it into range for a mammo image. Because I did originally have lymph nodes involved, they also did axillary lymph removal. They chose to do MRI before the surgery. And since that scan showed zero cells, they chose not to pursue a PET. All of my docs have worked closely together on the choices made throughout. I think they would have sent me for further pre-surgery testing if the MRI hadn't been so utterly clean. Even with the good stats that are out there on the use of Herceptin, the pathologist that did my biopsy work actually called my surgeon to ask about me because he was amazed that he wasn't even finding one or two dead cells in the tissue sent over. He said it was as if I had never had cancer at all. I worry that it is too good to be true, but I am also excited and want to believe in what has happened. Sometimes meanings get lost in chatting this way--did I answer your question?
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General: Just to add my situation to the mix. I had US, Mammogram, breast MRI, and PET scans prior to any treatment. BS recommended
meeting with MO, PS, and getting Pet Scan prior to TCHP. A side note I met with RO just after 6th treatment to get a consult. I also met with PS and BS just before 6th treatment.Radiation: Since I was node negative prior (via SNB) to neoadjuvant but I had a 1.5 cm and 1.2 cm tumor and a diffuse area in the upper right quadrant (the upper right quad was never biopsied so no one knows if it is DCIS or IDC) the RO strongly recommends radiation. There was some question of chest wall involvement but the PET Scan ruled that out. My husband asked if the diffuse area was not there would the radiation still be recommended and the answer was yes. Now the gray areas: 1) node negative and if there is a complete response, 2) if margins are clear and full response then it is a little gray. Some other factors about radiation were age (37yrs old) and obviously her2+ tipping the scales towards radiation. Don't get me wrong the RO would support whatever decision I make but all the factors inherent to me and the recurrence reduction, in the ROs mind makes radiation more applicable. I was hoping to not do radiation.
Imaging: BS did not require imaging prior to surgery b/c I chose a BMX and MO is not recommending imaging until maybe a little while down the road, probably another PET in a year? MO, BS and RO all did physical exams during every visit.
Misc: I believe Herceptain is targeted and not chemo. The KADCYLA (T-DM1) trial is also dependent on having residual tumor or node positive. The KADCYLA (T-DM1) includes a chemo incorporated with herceptain. I believe there are some trials looking at removing a taxane (chemo) away and using KADCYLA instead.
Happy Easter everyone.
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Can some of you further along or finished with TCHP tell me around when you met with the BS and PS as well as when you met with the RO? I met with my BS first, after initially being diagnosed. I haven't met with a PS yet. I met my RO about two weeks after surgery.
I'm looking ahead. Also, I see some did not have imaging before surgery. Who did have imaging and which imaging was it? I had another PET scan, as well as another mamm and u/s, about two weeks after chemo/two weeks before surgery. My MO scheduled those, but it was likely in consult with my BS, as the tumor board meets weekly and my case was presented from time to time as I passed certain milestones (like finishing chemo).
Oh, and what "chemo" did you have afther surgery. They had told me "easier chemo" and I am wondering if that means herceptinonly or might it be herceptin plus some actual chemo drug. Does the chemo and/or herceptin take place during radiation or start after radiation? For me it's just Herceptin, and I'm guessing that is what they meant for you. My last TCHP was Dec. 15th. I had surgery Jan. 9th and then had my first Herceptin-only infusion Jan. 23rd. I've been doing them every three weeks since then, through rads (which started Feb. 12th and ended this week!).
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Larod--you are right about herceptin. It is targeted not chemo. Good to clarify. I think even my nurses tend to call it chemo because it starts along with the chemo drugs and is continued via infusions at the same place you receive chemo. I know that if I tell people I have to go back for infusions I end up having to explain the difference to non-cancer folk every time.
Cassie--We are almost following the same calendar. My surgery was the same day as yours.
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larod - wouldn't that be something, to have a more targeted agent like Kadcyla and not have to use taxanes? I'm so encouraged by Herceptin and Perjeta and hope that things will indeed keep moving in that direction.
Mombie, indeed we are on similar timelines.
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I'm excited by all the break through drugs too. It makes me less fearful of recurrence (heaven forbid that it happen, but one must face possibility, even if not panicked). They have good next line of defenses out there and there are more things coming into play all the time.
I see threads in here that read "five years out--roll call" and so forth. Won't it be great when one of us can set up a thread like that down the line? I hope we all get to report there together when the time comes. I've met so many who give me courage and hope that this will be possible for our group too.
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Hello All! While I've never posted, I've been reading these boards since my diagnosis in Oct 2014. I am 37 and was diagnosed with bilateral synchronous cancer. It was very strongly ER+ (100%), PR+ (98%), and Her2 3+ by IHC. So, very triple positive. I saw a breast surgeon first and underwent CT scans of the chest/abdomen/pelvis, a bone scan, and a breast MRI. My left sided tumor appeared to be stage 1 based on size and normal appearing nodes, but the right sided process looked big and nasty. I had a mix of a lot of DCIS and some IDC. My nodes were not clearly involved. I almost immediately started TCHP and completed 6 cycles with the usual side effects.
I had my sentinel node biopsy after chemo and was clean bilaterally. I had bilateral mastectomy last week and had a pCR!!! Best Easter EVER! So, even with my impressive ER/PR positivity, TCHP still did its job!
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Thanks for sharing about why you are having radiation. I was told I probably wouldn't need it if I chose to have a MX, but then when I read about someone having it and I see their dx is just like mine I start to wonder! I don't want to have it, but absolutely will if it's recommended. But...if you do have a complete response and no nodes involved, then have a BMX, what is it that would be radiated? The remaining lymph nodes?
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I'm not sure except maybe they want to hit the axillary nodes and the ones up by the clavicle? I had cancer present in the nodes under arm. They told me that they wanted to radiate the nodes up by my clavicle because that's the next place it might travel. I'm just throwing out thoughts, don't really know.
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TrixieCat - great news. Congratulations.
Laurie - my doc insisted on rads even after BMX since I was ER/PR negative, so no other options available except the targeted Herceptin/Perjeta for the HER2+. Maybe you can get away without rads since you can take meds for the ER+.
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I can't tell you ladies just how thankful I am for you answering my questions. All of your responses have been a tremendous help in helping me better understand what may come next. Bless you all!! I love these boards :
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I don't think I could have managed half as well if I didn't have these boards to come to.
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