Neoadjuvant TCHP - Post Results Here
Comments
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Bjsmiller, thanks for your wize words. I beginning to feel the same of my port as you...) might as well keep it..My next challenge is getting in some kind of shape and that I have promised I will start this coming week joining a luxurious spa/pool and just take it easy in the beginning moving into the gym in a slow pace. Praying for no recurrence.
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I finished neoadjuvent TCHP in September. Breast MRI showed it as completely gone. Had lumpectomy last Friday and pathology came back not clear, definitely residual disease left. Looking at a double mastectomy now. Since I had no luck with tne chemo I just want them both off. No lymph nodes were involved ( so they say) so no radiation should be needed. Still have Herceptin every 3 weeks and antihormonal pills. I’m skipping the perjeta as I had such bad diarrhea from it and I lost 30 lbs.I have terrible neuropathy in my feet and fingers and 6 weeks sinc chemo ended food still sucks. Not happy at all with the results from this.
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LTWJ - I'm so sorry about your results, it's hard to believe that can even be possible. I am going through the same treatment right now. I've just completed 4 of 6 neoadjuvent TCHP treatments for an ILC tumor which needs to be shrunk away from my chest wall before a lumpectomy is carried out. The tumor is no longer palpable, so we assume it is working and shrinking, but an mri after treatment 6 will hopefully confirm, or so I thought it would. If the MRI showed clear, then I would have thought that was cause to celebrate!. It goes to show you what a sneaky and unpredictable illnesses this is. I am devastated for you after everything you have been through and getting to the end of all 6 treatments, I can only hope that I make it to the end of the chemo treatments. I am thinking of you and wish you success with the next surgery
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Hi LTWJ and Icedgem,
My profile is very similar to both yours. ILC is a tricky type of cancer. The way it worked for me, the chemo addressed the HER2+ “part” of he cancer. And the chemo didn’t do anything for the ILC part. I had a palpable mass that was 2cm big that definitely responded to the chemo and was no longer palpable after three rounds. Then on mrI after chemo and before surgery, NOTHING was seen. I was NED. Then 3 weeks later at the time of surgery they found a SIX cm ILC mass that didn’t show BEFORE CHEMO or AFTER. The only thing that gets rid of /attacks the ILC part of the tumor is 1) surgery plus radiation (especially if close to the chest wall) and then 2) hormone blocker if you are ER+ You may want to consider a mastectomy instead of a lumpectomy because of the way ILC grows: in a single-cell spider-web-like pattern. When they do a lumpectomy and try to verify clear margins, unfortunately the likelihood of them missing a single cell is pretty high, meaning that there could be a whole row of single cells OUTSIDE the lumpectomy site. Radiation may kill off any cells that escaped, but them they would be allowed to continue growing, and maybe spreading to lymph nodes over time without your knowledge since ILC in general doesn’t show up on imaging.
LTWJ, the way I see it, you were lucky your margins of your lumpectomy were unclear, leading to your decision to do a mastectomy. My worry for Icedgem is that during pathology, when checking for clear margins, they won’t even SEE one single row of cells that extend beyond the generally “clear” margins, and the sneaky ILC will be allowed to fester and continue to multiply.
Your situation may be completely different from mine, so please feel free to disregard my worries for you. My mass showed up just 2 months before diagnosis. But the ILC was slow growing, and was huge, and hidden, and likely there for years. I think that for me, the mass that grew had most of the HER2+ features, grew fast, and responded to the chemo right away. After chemo, surgery and the final pathology, my doctors told me that if I wasnt HER2+ the treatment would not have had to include chemo at all. It would have been mastectomy, radiation, and hormone blocker for 10 years only, no chemo. But since I had ILC AND her2+ I also had to do chemo on top of all the above treatments.
Also, have you both thought about what type of reconstruction. You are thinking about?0 -
LTWJ, I had really bad neuropathy too (causing me to stop after 5 rounds instead of 6), and it’s completely gone now, 1 year and 6 months after stopping chemo. The normal sensation came back incrementally over 3 to 6 months and now I don’t even remember it! And now my energy is also starting to return, and I’m able to exercise more and more. SOON the chemo will be a distant memory! Hang in there
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I’m so glad to hear that your neuropathy reveresed! I cannot feel 3/4 of each of my feet and it drive me crazy thinking this may never change. I complained to my oncologist when it started getting bad after 4. He gave me a prescription for symbalta and oxicontin , I m not kidding. I was furious. He said i had to finish the chemo for it to work.
I know I need a left mastectomy but I can’t decide if I want both. My common Sense says I need 1 not 2 but I’ve been conservative through all of this and it hasn’t worked. My husband thinks 1 because of recovery, get the other one later if I need it. He wants me to get BRAC tested first, if neg then 1, if pos then both.As for reconstruction I’m so torn because I know I want it, I don’t care if they are matched perfectly, but tne flap surgery seem so much harder to recuperate from. If I get implant surgery there seems to be plenty of problems too. Reading articles on this site they seem to really push the flap surgery, hardly mentioning any problems but they really push the problems with implants, like it’s a bad idea. Im so confused reading them. My breast surgeon says it’s my choice for any of it, but she said that for the lumpectomy too. If I said I wanted a bilateral mastectomy when the MRI came back completely clean she wouldn’t have batted an eye.
My lump was no longer palpable after 2 rounds of chemo and my tumor marker went from 68 down to 35, but I still had cancer
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My breast surgeon says no radiation after my mastectomy but after reading K’s part above, now I can’t say that I trust her on this part
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You are in a tough spot right now because you are having to make lots of decisions without really having all the facts yet. What is going to decide whether you get radiation or not is two things. If the tumor is close to the chest wall, and if the size ends up being 3cm or not. I was told that if it was as over 2 or 3cm I would get radiation. If it was under, radiation wouldn’t be automatic. The whole time we thought mine was just 2 cm, but it turned out to be 6cm. So when I went into surgery they said I wouldnt need radiation. Since it was larger and because it was lobular in that single cell formation, they said I had I to get radiation, and I’m happy I did.
The funny thing is that in the moment, chemo was the absolute worst. Radiation wasn’t bad. It blistered but healed up pretty quickly. And the surgery was really easy. My surgeon gave me the option of a lumpectomy, or single mastectomy. He said he would do a double if I wanted it, but that there wasn’t a medical reason for it. I decided on the double. I am super happy I did both sides. Had I only done one, I would have had no peace of mind about the non cancerous breast I would have done yearly mammograms and/or MRIs, not knowing if it would ever show up on imaging until it had metastasized to the bones or elsewhere.
Now, over a year after radiation was finished, just on that side I still have deep tissue damage (tightness, limited range of motion/ reaching back, slight weakness, and tingling in certain yoga pose positions), but I am still very happy I blasted this thing with all the guns possible.
My non cancerous side with the implant is nice and soft. There is some rippling and muscle animation, but I could live with that for the next 40 years. The radiated side however is rock hard since contracture set in big time. I wish I had considered more seriously the flap surgery for both sides at the time of my exchange 5 months ago. They knew that the radiated side would very likely contract, become distorted and sit higher han the other, but my plastic surgeon doesn’t do flaps very often and he didn’t really talk about free flaps or suggest it.
So now I am getting 2nd and third opinions about my options and am leaning toward redoing both sides completely, removing both implants in favor of bilateral flaps. I am either going to do a diep flap or a sgap flap, whichever the surgeon thinks will work best. That way there won’t be that animation and rippling on the good side, or rock hardness, assymetry and distortion and discomfort on the radiated side. Because I probably don’t have enough fat for two breasts, I’m either going to go from my current size B down to an A, or I will go to an A and then after I heal I will get small implants under the flap to go back to a B or small C if they can do that without disrupting the blood supply. I know it is a bigger surgery, but I definitely cannot live with this assymetry and discomfort for the next 40 years. I’m also not going to let just any surgeon do the flap surgery. I love my current PS, but last week he said he “can” do the feee flap surgeries, but that he only does About one a month or 12-15 a year. I consulted with one of five breast micro surgeon at UCLA last month wh does 2 to 3 free flap surgeries a week, or 100-150 a year. So if there aren’t any breast micro surgeons in my insurance group, I am switching insurance in May of next year so I can go to UCLA or some other microsurgery centers where they also specialize in free flap surgeries.
If you want to talk by phone or Skype, just message me privately. Hang in there. You are getting close to being done. Follow your gut about what you do or don’t want. A lot of the decisions are so personal, so just make the best decision in the moment, and be okay with it. You are now a warrior and can get through anything!
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I have a general question for all of you who opted for neoadjuvent TCHP. Did any of you have a sentinel node biopsy BEFORE the start of chemo?
I didn’t, and after the fact, I wished I had. Had I gotten the LNB before the starts of chemo, it would have told us whether I was a stage 2, or stage 3. To only do the LNB after chemo at the time of surgery, we lost the ability to accurately stage the cancer because the chemo COULD have killed off any micro metastasis in the nodes.
Any thoughts?
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I had tne node biopsy when they put my Port in and I also had a ct scan to make sure it hadn’t spread anywhere.Both came back clean
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hi, I have a very similsr experience. I have ILC, completed 6 rounds of TCHP, then single masectomy. Just got the pathology report. The tumor was larger then expected. It was 58 mm by 44mm. Everyone thought I had a great response to chemo. And I did have a response. Just not a complete response. The tchp killed most of the breast tumor. Micro mets greater then 200 cells were detected in 4 of 7 lymph nodes. A 1.9 mm tumor was found in one lymph node.
I have radiation starting in a couple of weeks. But what after?
Like everyone I want this cancer gone and I don't want a recurrence.
I still have several months of herceptin. And then hormone inhibitor therapy. Will that be enough to prevent a recurrence?
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lwbt - I didn't have a complete response to TCHP chemo either. Supposedly the surgery after chemo got clean margins but my MO recommended 4 rounds of AC chemo after surgery & before rads, just in case there were any micro mets. I'm 3 years out from those nasty chemicals.
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Hi Lwbt,
You are close to being done. You are doing all the right things to rid your body of any cancer cells: chemo, surgery and radiation. The last thing you can do is the hormone blocker for at least 10 years. Hang in there. 6 months after radiation I started feeling a lot better and was able to get back to exercising and having most of my treatment be behind me. You are really close!
Can I ask how your cancer was first detected? Was it palpable? Was it seen on mammogram?
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Khanniganslp9,
In 1998 I was diagnosed with ARVD. It is a heart condition and was causing my heart to go into V-Tach almost continuously. An ICD was implanted beneath my left breast. That made me asymmetrical, so I has an implant placed beneath my right breast. 18 years later it deflated, so I went back to my plastic surgeon to have it replaced. And he found the tumor during that surgery in May 2017.
I had a mammogram in Dec 2016 that was good. But later was told that only abt 50% of lobular breast cancers are found by mammogram.
So here I am. 51 years old with stage IIIB Breast cancer and a lot of life to still live. I was so wanting a good report after the surgery. I don't care about reconstruction or my hair growing back. I just want like everyone else, to be cancer free, and have my life back.
I'm limited on what chemo I can take because of my heart condition. My breast surgeon recommended that I have a genomic assay completed on the tumor to determine if there is another chemo regiment that will kill it. I see my oncologist on the 11th. I like him but he is a very by the book kind of guy.
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I finished 6 TCHP on 11/9/17. After #5 I was hospitalized for dehydration and blood in my stool. Turns out I’ve developed an ulcer in my stomach along with esophagitis. I’m now 3 weeks out from last one but still have belly pain - particularly on right side. I’m thinking my colon is inflamed as well. Anyone else have this happen?
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Clynnejohn5: I developed an abscess on my colon. It was discovered 3 weeks after I finished TCHP. I only had mild pain but no fever. I was hospitalized for 4 days while it drained and I was put on IV antibiotics.
Background: starting with round #2, I would get belly pain on the right side. The pain would start around day 3 and continue until about day 11. Then it would disappear until the next round and the same thing would happen again. But after round #6, the pain never went away, but became more of a discomfort. So my MO sent me for an US, then a CT. The CT showed the abscess and I had to go to the ER that evening to get admitted to the hospital.
According to the internist at the hospital, chemo often causes these abscesses. I was surprised cause the pain wasn't nearly as bad as the pain I experience during chemo and I didn't have a fever so no one expected an infection. So contact your MO. You don't want to leave an abdominal abscess untreated.
Please keep us posted. Good luck!
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Thank you for your reply BellasMomToo! I had a CT and MRI after round 5 when I was hospitalized. At that time it didn’t show anything but maybe I should get checked again. It seems to be relieved with a bowel movement and those are back to normal yet (either diarrhea or constipation).
On another note for us TCHP gals; my doctor congratulated me Monday on finishing the treatment. He said it is the hardest regiments there is. I don’t know if he was trying to make me feel better after all I’ve been through but I do know it was hard. However, with a good medical team it is definitely doable! I urge anyone who is just starting to not be afraid to call the doctor if you’re having a problem. That’s what their there for
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"On another note for us TCHP gals; my doctor congratulated me Monday on finishing the treatment. He said it is the hardest regiments there is"
I had most of the members of my medical team say that. Except my main MO lol. But the consulting MO who did the tumor board second opinion said it. I asked why they considered it rough. It was somewhat due to the length of the overall treatment, and the combination of drugs raising the SE factor.
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LWBT,
You are doing all the right things. Lobular responds to estrogen blockers the most, more than chemo. But you, like me also had to do chemo to address the HER2+ part of our cancers. After my tumor was found to be much bigger, I asked if I needed more chemo/another type, and the consensus was that there wasn't anything else that could be given because it was lobular. At that point it was just the estrogen blocker that I would need to take for at least 10 years, not just 5 years. Best of luck. Do what the doctors tell you to, and get back to living a normal life!
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Clynne,
Your MO was not exaggerating. TCHP is one of the toughest regimines! So congratulations for completing it! Best of luck.
Karen
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lwbt,
If you don't mind, I wanted to ask you how you decided to just have a single mastectomy. It seems you were very fortunate that your PS found the tumor, but that it wasn't seen on mamogram or other scans. Lobular worries me because it is often hidden. I had a double mastectomy before I knew my tumor wasn't showing on any imaging (ultrasound, mamogram, or MRI), and I'm really happy I did. If I hadn't done both, even though I would have continued to get mamograms or even MRI's, but I think I would have been worried forever that it might be lurking for years without any symptoms.
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I begin TCHP on December 12, 2017, in three days. Looks like this thread has not been active for a while. By posting, I am hoping to invite current replies. Naturally, I am uneasy about starting Chemo. Is this targeted treatment even called chemo? If anyone has had good results, or good ideas for handling this treatment, I'd like to know about it..
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I spoke to NP about my belly pain. I’ve been especially anxious because my sister passed from ovarian cancer in October of 2015 (both of us were negative for BRCA gene). I had an abdominal and transvaginal ultrasound Wednesday. Ovaries are good
- but I’m still going to have it all out ASAP. Belly pain is getting better; so it must have been a SE. 4 weeks out from final chemo now. Cathy
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In three days I start therapy. Have any of you had, or do you know of anyone who has had a good outcome from this therapy? Or, reasonably manageable side effects? I am struggling to stay as positive as possible.
Warmly,
Emalyn
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Emalyn - what kind of therapy? Are you doing Perjeta only? That would be unique. All of us on here have had multiple experiences. If you're talking about TCHP, there lots of descriptions in these 29 pages. Some have more side effects than others. Some are nasty, some just annoying. There is always a current "starting chemo- xxx" group running - like Chemo Winter 2017 or chemo December 2017. I found a great deal of support in sharing contemporaneous stories, and lots of knowledge in reading the posts from the "season" before. You can do this.
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Emalyn: Here's the thread for 'starting in november'
https://community.breastcancer.org/forum/69/topics...
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Minus Two:
Thanks for your reply! My treatment plan is TCHP. (Taxotere, Carboplatin, Herceptin, Perjeta) I just figured out how to put that into my profile for this web forum. However, I am not sure the change has posted yet. Also, I plan to follow your advice and check out a season earlier.
Emalyn
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Emalyn - here's the link for the chemo topics, that has Sept, Oct, Nov, etc. There are also some HER+ forums. But as you can see a number of us still have this topic on our favorites, so please let us know how you are doing.
https://community.breastcancer.org/forum/69
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Appreciate the link! Chemo-Immuno (my term) starts tomorrow. Woke up at 5 am this morning, nervous. Saw some videos on YouTube by scientists about studies of the combination of Herceptin and Perjeta and the excellent results. This was encouraging and calming. I'm trying to strike a balance between learning about my illness and treatment, seeking and getting support, and distractions. Maybe distractions won't work well today, but I will still try. I'm open to suggestions - what has worked for you?
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Hello, I finished TCHP chemo on July 7th.I had a mammo and a breast MRI right after my last treatment.MRI showed residual cancer and the mammogram showed microcalcifications.I had a quarter of my right breast removed and sentinel nodes removed on july 31st..i had a pcr!what they found in my breast tissue was benign calcifications and a huge 5cm x3cmx3cm scar from my initial biopsy which was probably what showed enhancement on the mri.I will continue to receive herceptian and perjeta every 3 weeks until March 2018.
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