Neoadjuvant TCHP - Post Results Here
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Thanks, misslil. I am checking the info about Nerlynx.
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All, my wife is having the 3rd TCHP today. The nurse we used to see is not available and the substitute is putting the infusions in a different order PHTC instead of TCPH like the previous 2 times. Does it matter? I believe it should not but I am just asking.
Also, the nurse told us today that after the neo-adjuvant, my wife is going to continue the H and P combination for the reminder of treatment year. I was under an impression before that there is only H. Sounds like a new approach, anybody else has the same experience?
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LilyCh:
My facility usually does the targeted therapy infusions first but because I am doing cold capping they do the chemotherapies first and the targeted therapies after to make double use of that time for the cold cap warm up phase. It gets me out of there sooner. They didn't say anything about it making any difference as far as effectiveness of the treatment goes.
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LilyCh,
The H and P adjuvantly is not a new approach. It was a new protocol three years ago when I went through treatment and I feel lucky I was able to qualify for it!
I had a complete response to this regimen afterinitially having ten tumors and one positive lymph node.
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My infusion center does it in PHTC order, with the extra nausea meds first, before starting the Perjeta.
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Thanks, WC3.
Is H + P for a whole year a "new" standard option now?
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I think it is. I was able to have Perjeta as neoadjuvant with the TCH due to the size of the tumor but only Herceptin as adjuvant.
My meds were given as targeted therapies first followed by chemo agents. I remember because I learned to suck on ice chips for the two chemo drugs at the end. All premeds were given at the start.
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Thanks a lot, raleighgirl, Hybrids and NotVeryBrave.
Hybrids: yes, nausea meds first. Maybe next time we would ask the nurse to stick to PHTC order. My wife said she is going to see if her reactions are different this time with the new order (hopefully in good direction). Thanks again.
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I don't know if I ever posted my results!
I found the lump about 4 months after a normal screening mammogram. All imaging (mammo, US, MRI) showed a similar size (2.7-2.8 cm). Two nodes were suspicious, but the one biopsied was negative (discordant).
I could not feel the lump shortly after the first round of chemo. Post chemo imaging showed nothing there. Final pathology was clear. No cancer at all!
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NotVeryBrave: Wow, that is so great, thanks very much for sharing the encouraging news!!!
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NotVeryBrave: one more thing, :-), "Post chemo imaging showed nothing there", why would you still choose mastectomy? A few weeks later my wife is going to make a decision about this, we are just curious.
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LilyCh:
In that situation I would still choose mastectomy due to the possibility of microscopic malignancy and the fact that my cancer is high grade and has a high local recurrence rate.
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WC3: Oh, but NotVeryBrave's Grade is only 2. :-). Other than the grade number, what else is considered for "the possibility of microscopic malignancy" and "local recurrence rate"? would BS and/or MO give the analysis?
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LilyCh - The standard protocol for continuing H & P depends on your individual diagnosis. Although I was eligible because it was a recurrence, I chose to continue only with the H since the perjeta caused severe diarrhea for me and I'd already lost 60 pounds that I couldn't afford to lose.
I chose BMX the first time out when my diagnosis was only DCIS. There was not one bit of doubt in my mind from the beginning. I didn't want to deal with two different sides nor with the chance they missed something and I didn't want to do rads. Both breasts were very dense & I'd had call back mammos for 15 years. Sure enough, the "good" breast had as much DCIS as the original problem one. They got clean margins & I didn't have to do anything else... And I proceeded with anatomical cohesive gel implants. Edited to add, at that point in time they didn't test for HER2 with a diagnosis of DCIS.
Unfortunately two years later I ended up with IDC in my right lymph system. A micro dot apparently skipped right past the excised nodes from the original 3 clean SNBs (clean on both sides) & took root. And it also transformed from DCIS to IDC. So neoadjuvant chemo, ALND surgery, more chemo, rads & herceptin for a year.
Still - I would not change my original decision to have the BMX. I wanted my life to continue to be as care-free as possible, pull on a T-shirt and go. I couldn't have done that with a unilateral and as it turned out, a lumpectomy would have ended up extremely unsightly since they found much more DCIS once they opened me up. It's a difficult decision. Hopefully you can support your wife which ever way she chooses.
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MinusTwo:
Thanks very much for sharing your stories and thoughts.
At this moment, I feel like for my wife's case, it might be fine to have the lumpectomy --- single tumor, Grade 2, Triple Positives, size first reported as 7 mm by US, one week later MRI said 2 cm, node negative (by both US and MRI), Genetic Testing negatives (for nine genes), no family history...
Yes, we would wait until chemo finished, meet with both BS and MO, and make the decision.
Thanks again.
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LilyCh:
Mainly that it is HER2 positive, high grade, and a family history of recurrance or second breast cancer.
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I have gotten my MO on board this time with new added meds. I told him I was ready to quit. He made some adjustment, since day eight last time took me back to hospital for hydration and potassium. Day 10 I was able to go back to work for the next 10 days. This time we are extending the dexamethasone (steroid) which I started today for eight days. Day 1 after chemo Friday we are using zyprexa at bedtime for three days, and ondansetron. And he gave me compazine to use instead of zofran. Still have the Zarxio shots for 5 days.
He does not want me to go past Tuesday this time, day four without poss. going back in for fluids. I will keep you posted my friend. I also ordered this stuff called metaqil on amazon. It takes a lot of the metal taste out of your mouth so you can eat a little better. I will write more as soon as I can. Here I come round two. xoxo
Hang strong my friends, what doesn't kill us only makes us stronger.
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Hi Hughope1, I just saw your response about how you and your MO adjusted your meds to make it all a little more tolerable. I’m happy you are able to do that. It made me smile because when I was doing my TCHP treatment in 2016 after a few rounds I started asking my MO if I could stay on steroids longer than the first three days. He said no, but what I did was “steal” a fourth or 5th day by spreading out my 3 days worth of steroids over the 4 or 5 days- all with his blessing. By the end through, i ended up stopping after five rounds instead of six, just because it was so bad and because the number of “good” days, usually about 8 to 10 days, had narrowed to 2 or 3, before I had to start it all over. You gals are all doing so well, just press on one day st a time, and soon this part of your treatment will be a distant memory that you can even laugh about from time to time! Big hugs.0
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I just somewhere says for Neoadjuvant TCHP protocol, only tumor >= 2 cm (or node positive) gets P, otherwis still TCH. Is that true?
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Those were the parameters from the original study that supported treatment / insurance decisions neoadjuvantly for early stage HER2+ patients. Whether it's changed by now (>2 years on), I'm not sure -- there have been different studies since then plus a lot more clinical practice.
I remember because TCHP was pretty new when I got my diagnosis, and I only qualified after my MRI report came back right at 2 cm. My mammogram reading was around 1.5cm.
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Thanks, misslil.
Talking about size, which one gives more accurate information, Mammogram or MRI? Three months ago when my wife's US report was out, it said 0.7 cm, but the MRI one week later said 2 cm, that concerned us a lot as we thought the tumor grew so quickly in a week...
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LilyCh - the parameters for Perjeta have changed. I don't know exactly but there are many HER2+ cases where it is regularly recommended now. As for size - the definitive answer is of course surgery, but the MRI is more accurate. Most surgeons ask for an MRI &/or CT before operating to pinpoint the area as closely as possible.
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Thanks a lot for the information you provided, MinusTwo
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I had the same question when the MRI reading came back 1/3rd bigger after just a few weeks from my mammogram. I got a vague comment that different methods can measure differently.
It crossed my mind it was ~convenient that the second report came in exactly what was needed to qualify for insurance on the team's preferred treatment method. I didn't inquire too closely.
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My breast MRI came back 5 cm after my sonogram said 2. My MO said MRIs are not exact and tend to show bigger. Then after TCHP chemo, breast MRI showed no cancer at all as did sonogram, so they used an old sonogram to pinpoint where to do tne lumpectomy. Surprise then when tne pathology of the lumpectomy had plenty of cancer in it, and no clear margins. Then I had a bilateral mastectomy and the pathology found no cancer present. I have to believe they have my best Interest but they def are trying me
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LTWJ. Wow! what do we "trust" now? MRI or US? Pathology of lumpectomy had plenty of cancer but none from mastectomy? even more confusing.
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LilyCh - I'm sorry that I didn't see your question to me from a while back. I'll try to answer it now.
Why I chose BMX if the cancer appeared to be gone - lots of reasons (in no particular order): They were watching an area in the "good" breast that was concerning enough to warrant an MRI every 6 months but not a biopsy (2 other areas disappeared during chemo). I was both afraid of radiation (required with LX but not with MX for me) and I also didn't want to "use up" that treatment in case I needed it later. They were still going to take the originally planned amount of tissue in hopes of guaranteeing clear margins. I was worried about aesthetics and symmetry. I wanted to do "all I could" and not look back. I was 50 when diagnosed - plenty of time for recurrence.
It's a big and personal decision. Some people just know what they want to do. Not me. I agonized over it. I second guessed my choice afterwards. It's super hard. But I'm glad that I did it in the end. I miss my real breasts and I had some complications (infection and rotated implant), but it's behind me now and I concentrate on the positives.
On a side note - I only had Perjeta with NAC. I qualified because my tumor was > 2 cm. The decision to continue it with Herceptin for a year came later, after I was done. I'm kind of glad actually. I had a lot of problems with diarrhea that seemed to get worse the longer I was on it.
And - as far as MRI and tumor size - I was told that MRI usually shows the area as quite a bit bigger. All of my imaging (mammo, US, MRI) showed a consistent size.
Best wishes for your wife!
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Thanks so much, NotVeryBrave!!! Really appreciate it.
Regarding Perjeta, I had a chance to ask the MO yesterday and she said, yes, only size > 2 cm will get it during the neo-adjuvant (and the rest treatments of the year). She said for node negative and size < 2 cm, Perjeta is not that effective (maybe it is hard to get covered by insurance as well?). Originally my wife and I were sort of disappointed by the size (first reported by US as 0.7 cm and one week later by MRI as 2 cm), but it ended up may not necessarily be a bad thing
Regarding the order of TCPH or PHTC during the infusion, the MO said it does not matter. My wife had TCPH for the first two and PHTC during the third, should we ask the nurse to stick to PHTC from now on? :-)
Oh, my wife is having the fourth infusion tomorrow. We are glad it is half way through and the MO said the tumor is not palpable anymore :-) :-), but we are also kind of nervous, it may get harder? We hope not, but fingers crossed.
Is this time now to contact the BS for the tests (MRI,US etc) and surgery after chemo or not yet? How soon do you usually have the surgery after chemo?
Thanks again
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I don't think that the order of the infusions matters much - unless your wife felt differently. The only thing that I did was to suck on ice chips during the chemo drugs to help protect my mouth from sores.
It's funny - some things seemed to resolve over time and bothered me less. Or I just got used to them! Some things were cumulative so watch for any signs of neuropathy especially. I thought I'd be happier by halfway done, but I think I started to lose steam and get kind of down with the whole mess. Each step forward is good though.
Surgery is usually scheduled 4-6 weeks after chemo is done. They will want follow up scans done soon after the last round and the BS usually orders those. A pre-op visit with the PCP is needed as well (clearance with blood work, EKG). If any reconstruction is planned - a visit with at least one PS should be arranged, too.
I agree with the size concerns and chemo plan. TCHP was highly successful for me. I'm glad that I qualified to have it as NAC. It was really encouraging to have the tumor shrink away.
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I completed my six cycles of TCHP on Sept 5. I had some issues with low blood counts and side effects along the way. I got my imaging results back and they showed:
The tumor shrunk from 2.7 cm to 1.7 cm according to the Ultrasound. The lymph node that had cancer in it shrunk from 2.5 cm to 1.7 cm according to the US. The MRI showed that the tumor had completely resolved and that the lymph node had shrunk and looks more normal.
Surgery is scheduled for Oct 9.
Has anyone else had US show a residual tumor while MRI showed complete resolution? If so, what did the pathology ultimately show?
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