Neoadjuvant TCHP - Post Results Here
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Joy - I was happy to have the port all through Herceptin. BTW - I never let them run the herceptin faster than 60-90 minutes when I started doing it alone. That meant very few side effects. Also I often had an extra bag of saline to counter dehydration. The port has to be flushed every 6 weeks if you're not using it, but you will be in every three week for Herceptin anyway. If you have a "power port" they can use it for blood draws too, as well as contrast for CT scans or MRIs, etc. I really didn't want any of the poison stuff going into my veins.
Part of this probably depends on the location of your port. My BS put mine low enough & far enough to the side that is didn't show. Also it was out of the way of my bra strap. Issues to juggle. Some docs will remove the port in their offices, but even if you go back to a clinic or hospital, they don't use full anesthesia and it only takes a minute or two.
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Thank you, MinusTwo, this is all good info to have. I will definitely talk to the breast surgeon about how involved it is to remove the port. I have already used mine for an MRI and was glad to have it for that as well as blood draws. Mine is in a fine location, but it unfortunately is right under my bra strap. Not too annoying though.
My understanding about the Herceptin is that it wouldn't give me side effects alone. What side effects should I be aware of?
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Of course - fatigue. I had some joint aches - especially when they tried to run it in 30 minutes. Some diarrhea, dehydration, lack of appetite. I also had regular DECA scans to check for damage to the heart. Some people have MUGAs. Herceptin damage to the heart is usually reversible, but they have to keep watching.
Because a port is a "closed system" I was allowed to go swimming or do pretty much anything I wanted.
My MO was insistent that I keep the port through Herceptin treatment. In fact that's the main reason he ordered a port in the first place - the length of the treatments. But all docs are different.
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MinusTwo, thanks. I'm honestly disheartened to hear that it could cause these SEs. I wonder if others have experienced this with the Herceptin infusions. At my last TCHP infusion on Friday, I asked the nurses and they said they didn't expect me to have SES with it alone.
I also asked a nurse about getting the port out and she said doing the Herceptin without the port wasn't an issue. My medoc said the chemo meds were likely to burn my veins without the port, but that the Herceptin alone doesn't have that issue.
Also, my breast surgeon did say it would be surgery to remove it. So, I am going to have it removed at my MX. Yes, each team of doctors is different in their approach.
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I had my last TCHP on 2/14, and my first Herceptin only infusion on 3/7. The Herceptin only took 30 minutes and I had no SEs.
I'm keeping my port until I finish Herceptin. My Drs recommended the port because because I would be on Herceptin for a year. If I was doing chemo only, I doubt they would have pushed the port.
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As with everything about this journey, each of us is different. I have "rolling veins" and lymphadema, so I don't want anyone doing sticks in my arms - for ANY reason.
Joy - I hope you are fortunate to have no SEs. Bellas - good news that you don't.
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Hi All, I just had my 2nd of 6 rounds of TCHP last Tuesday. The first time I didn't have any nausea, now, for the past 3 nights, I'm getting nausea in the evening. Has that happened to anyone else? I was hoping that since the first Tx I didn't have nausea that I was going to get away without it..
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I didn't have any nausea the first TCHP cycle. Then had nausea / queasiness for some weeks during the 2nd / 3rd, maybe 4th cycles to varying degrees. It helped when I got a different Rx from the clinic nurses and better instructions when to take it to forestall the nausea lingering on.
For whatever reason, didn't have much nausea or queasiness at all in the late cycles though I developed other SEs to deal with.
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misslil thanks for the info, I'm going track when it starts and hopefully get a better handle on it. It caught me by surprise. I know side effects differ for each person, but are there any surprises I should be on the lookout for?
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beaner81, best wishes as you're in progress with your treatment plan. I kept a list of what symptoms I was seeing that I could bring to my MO appointments, the mix of issues varied over time. I also found the R.N.s in the infusion clinic to be very helpful and easy to talk to, as they spend the most time with the patients who are going through the process and SEs. They gave me good feedback on what was 'normal' given the circumstances, and when the SEs I was going through - including the nausea - should be treatable with OTC or Rx medications, when to take them to avoid the SEs being too severe, etc. In the nausea case, my MO had prescribed Ondansetron (sp?) which was not entirely managing the nausea. The nurses put me in for a second Rx for Compazine, which they said was better to handle nausea once it had actually broken out. Between the two, and the passing of time over the cycles, eventually the nausea did go away toward the last phase of my chemo treatment.
I probably would have been a better patient if I had taken the Rx medications more consistently. I don't like taking pills lol so I was always trying to predict when I'd need it and take the minimum I could get by with. Vs. taking it consistently which may have better avoided the nausea issues. Or not. In my clinic visits sometimes I would see patients with severe nausea that was not under control, anything I had in contrast was mild.
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misslil, thank you so much for the info. I don't like taking pills either and am tracking my SEs for my next appointment. The nurses labeled my nausea meds #1 - Zofran, #2 Compazine and #3 Ativan, so that's the order I need to take them, but if vomiting starts, skip zofran and can alternate Compazine and Ativan... the nausea this time just caught me by surprise, next time I will do some preventative measures so I'm not caught off guard and losing my dinner
thanks again for your help!
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i have had my second cycle of TCHP and my reflux is bad with the second one. i have reflux and delayed gastric emptying and other SE's are manageable except these two. after the first cycle my Mo could barely feel the lump. now, after the second one we cant feel it anymore. my MO thinks that if my reflux is this bad, we might not be able to finish all 6 and 4 rounds might be enough to get a pcR. plus continue the Herceptin for one more year. of course, i am praying that i will finish it off. i will be referred to a GI doctor. is there anyone here who had to cut short TCHP but achieved a PCR?
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kae,
How wonderful to hear the good results with your tumor not being palatable! I'm so sorry to hear of the reflux issues though. I have dealt with that in the past (though not with chemo) and it was crippling. That on top of the nausea and diarrhea that comes with TCHP is just awful.
If they decide to shorten the chemo, I would encourage you that your tumor responded so quickly. My MO said he has only had a few on TCHP respond completely because of the chemo. He said most still have some tumor remaining that is removed in surgery. This is after all 6 rounds. To have yours respond after two cycles means you are already ahead of most who complete all 6. Just my amateur thoughts...
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Kae,
I did 2 of 6 TCHP and achieved a pCR, so it is possible. After the first cycle my lump was clearly not as big and after the second we couldnt feel anything. It just seemed to melt away. My tumor was 1.6 cm.
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thanks Jewel and Joy
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I am so happy I stumbled upon this thread!
I have my first of six TCHP treatments tomorrow and my anxiety has really been up and down about it the past few days.
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Even though I also had results after the first 2 TCHP, my MO explained that Her2 can show up other places in the body and may develop over time. The protocol of 6 addresses anything that may also be other places.
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I had substantial reduction in the 2 cm area after my first weeks of TCHP, to degree that I could not feel anything any more and my MO was not feeling much of anything either. After six treatment cycles, there was still a little nugget 1mm left in there per the pathology. I hate to say, but that left me wondering if I needed seven or eight cycles. Or if there could be just some cells that are darned stubborn no matter what. They took out quite a bit in my surgery with wide margins, hopefully they got any remaining troublemakers but I am going to go ahead with the radiation just in case it may kill off any stragglers.
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Myraknits, That is my understanding as well, good reminder.
Mislil, pathology definitely gets the last word. You’re wise to do the rads.
Bethany3, you are starting a new journey and you will come out stronger on the other side. Praying for you today. I hope you have informative and kind nurses who can prepare you for the side effects and help you to see your blessings. I hope you have all your meds on standby. They are your friends on this journey. It always took a few days for the diarrhea to hit, but my tastebuds and appetite were altered right away. You can do this!
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Joy- I second all that Minus shared about keeping the port for the Herceptin only infusions. I also had them run 60-90 minutes with saline to keep dehydration at bay. Had some fatigue but not too many other SE's. Finished treatments May '16 and had port removed Aug. '16 during a "buffet" of services under anesthesia- endoscopy/port removal/colonoscopy with good results. Port area still gives me a twinge from time to time. However, I am glad to have had the port the entire time! Good luck with the rest of your treatment. BTW; I had a complete response.
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kae_md99 - I too had terrible stomach problems, starting with the first round but much worse by the second one. I was put on Omeprazole 40 mg daily for the gastritis and given Carafate for the esophagitis. They helped enormously within a few days.
I seriously debated stopping the TCHP after the third round due to side effects and concerns about long term problems. I was given the option of just doing the HP, but cautioned that the six rounds is based on trials. They just currently don't know for sure if someone would do as well with 2 or 4 or 6 or 8! I ended up sticking it out because I knew that I would kick myself if it came back and I didn't follow the recommendations. I have one more to go!
BTW - I could no longer feel the lump within weeks of the first round and it was 2.7 cm when discovered!
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NotVeryBrave- yes i have sucralfate and i am on nexium 40 twice a day plus a lot more.i have a condition called gastroparesis or delayed gastric emptying which makes things worse. i will try to get as many cycles i can tolerate with taxotere then my Mo might reduce or just remove the taxotere which she believes is causing the side effects for the remaining ones.i will still still get 6 treatments pre surgery per protocol. good luck on your last one.congrats! after first cyle i hardly can feel a lump and after the second cyle, there is only like a tiny swiss cheese-like thing that i feel..yours is totally gone? like a normal breast tissue? we are similar in stats, i had 2.5 cm,grade 2 on diagnosis
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Yep - can't feel anything. NP did exam when I was thinking of quitting and couldn't feel anything either. They are planning to repeat the MRI after the last round, but I understand that sometimes it still looks kind of like it did before - even with a good response. Surgery and pathology will be the final word, I suppose.
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thanks notverybrave, my MO thinks that after 4 cylces i will have pCR but i will take it one day at a time. will have my third friday next week and hopefully if something still remains, the third cycle will take care of it.
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"had port removed Aug. '16 during a "buffet" of services under anesthesia- endoscopy/port removal/colonoscopy with good results"
That's a good idea. I'm overdue for a colonoscopy, the logistics of doing it under anesthesia being a big issue before the cancer fun started last summer. Doing it one of these other times in conjunction with getting the port out after I finish with Herceptin may be a good idea. I was also thinking to have the port pulled when I will go in for a plastic surgery fix-up in the fall.
I'm not sure what the percentages are of those who are seeing full vs. not quite full response to TCHP. It seems quite a powerful combination even if I didn't have a full response. I read somewhere being ER+ may not work quite as well as some of the other variations.
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Last week I showed up for my first post-chemo infusion of Herceptin alone and my medoc told me that a new study has shown improved results in continuing Perjeta along with Herceptin. He said the full results won't be revealed until later this spring, so he didn't know how dramatic the results actually were, but wanted me to have both for my infusions until we learn more. So, unless the full results aren't very impressive, my medoc will be giving me both bio drus every three weeks for the next 8 months. I'm curious if anyone else heard about this from their medoc. I did my own search just now and found a few articles about it. Here's one: https://www.gene.com/media/press-releases/14655/2017-03-01/phase-iii-aphinity-study-shows-genentech
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yes, i have heard about that but my issue is insurance, do you guys think insurance will pay for Perjeta adjuvantly?
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I have no idea and didn't even think to ask the question. I have assumed insurance would cover whatever the doc ordered.
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Joy,
i did ask my MO about it and she said her only concern is heart issues but hopefully the aphinity trial will address that issue. i would love to do the perjeta together with the herceptin also.
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hi everyone. Joy45Gen, thanks for sharing that. I will have to ask my MO. With early stage breast cancer and neoadjuvant TCHP, the perjeta is typically only approved/given for 6 cycles. Insurance would be a big issue for many. Like Kae, i would be happy to continue with the perjeta for the rest of the year as an extra insurance policy. Perjeta adjuvantly is approved for metastatic disease, if memory serves.
For anyone suffering from nausea, don't tough it out. Please call or go see your oncology nurse. It could be reflux, not nausea, which is well controlled by omeprazole (a/k/a nexium) and ranitidine (Zantac ). The side effects typically get worse not better so it's good to get on top of them. I suffered a week of nausea only to have to nurse tell me it was reflux. Having never had reflux, I was clueless.
Running the Herceptin only slower is not something I had heard but sounds like a good plan and I will ask about that. Thanks for the tip.
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