Neoadjuvant TCHP - Post Results Here
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Me Too!! I am on a few threads and they have prepared and supported me through out this entire process!
Patty
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Same here. I wish that I had known about them and joined early on. I was muddling through as best I could, then I found these boards when I started radiation. Radiation was causing me PTSD connected to traumas from my past. I started looking for women who might have experienced the same or similar and that's when I found these threads. Quite literally, these boards saved me and helped me find avenues for healing in more ways than one. I'm glad that many of you lovely gals are finding help here sooner than I did. --Sara
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It's great to hear about what everyone knows and has done and how you all are doing!
I'm still doing TCHP... My 6th cycle will be tomorrow! I can't wait until I'm done with the chemo as it has been pretty nasty (2 hospitalizations due to diarrhea/dehydration, and home IV drips the following cycles... numbness in one foot due to neuropathy).
Before chemo I had CT scan (hip/abdomen), and a PET. Then I switched insurance and doctors and my new MO wanted a LOT more screens, even though I'd already started chemo, so I had a Bone Scan, Bone density, Brain scan, Genetics test.. and a Bi-lateral Breast MRI after 2 cycles, because I couldn't arrange to get it sooner.
I saw a surgeon and radiologist when I was first diagnosed, but then decided on neoadjuvent chemo--and then changed plans! So new docs (fine with me! wasn't too pleased with the surgeon who at first said I should get an SNB before chemo and then denied saying that)... saw the new surgeon during my 4th chemo. (He was recommended by my MO and was featured in the 2nd part of "Emperor of all Maladies"). He (Dr. Giuliano at Cedars-Sinai, Los Angeles), wants me to get another MRI at the end of my chemo, then he will see me to arrange the surgery, which most likely will be a lumpectomy. He looked at the results of my first breast MRI and said it looked like my 3cm tumor had shrunk a bit, maybe to around 2cm. I can still feel it, though! So that's no fun. But shrinking is better than not shrinking!!! (I'm ER+ PR-, so maybe I'm one of those who isn't going to have a perfect result from the TCHP???)
So far, no signs of lymph involvement.. but they won't know for sure until the SNB, I'm guessing. I was happy to have all the extra scans, though, since they kept reporting no sign of any spread, which is reassuring, even if it doesn't mean some undetectable cells haven't spread...
I have not seen a new radiologist yet... but I'm pretty sure I'll have to do rads with the LX.
I think I'll have to do Herceptin and femara after chemo...
I'll definitely know a lot more after surgery...!
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I was diagnosed with IDC Stage 2a ER/PR- and Her2+ on October 13. Prior to chemo starting I had a SNB which was positive.I had 6 rounds of TCHP that ended on Feb 13, 2015. I had a bilateral mastectomy and 5 lymph nodes removed on March 17, 2015 all of which tested, along with the breast tissue, as no remaining evidence of cancer. I had achieved a complete response. However, I have seen a RO who is still recommending 28 rounds of radiation. For those who have achieved the complete response and did radiation, what were some of the deciding factors that influenced your decision?
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Denise--I had a complete response. I didn't want radiation but a few things made me change my mind. One is the high level of recurrence among Her2+. Two, I had lymph involvement and apparently the next set of nodes the cancer will show up in is the ones near the clavicle. My radiation targeted that. Three, I have a great deal of confidence in my surgeon. She is highly recommended in my area and she has done breast surgeries for over 30 years. She has seen a lot. Apparently, she has seen many women choose no radiation due to complete response end up back on her operating table with recurrence in the original tumor sight. So when she added her recommendation to my MO's and RO's oppinions, that made me do a little more homework on the net. (be careful with that, you can really scare yourself) I am religious, so I will also say that I prayed very carefully over this matter as well. I felt like all of my resources pointed at radiation being a wise choice. I'm sure everyone here is trying to make choices that secure a NO RETURN POLICY for their cancer. It seemed prudent to add radiation to my "policy".
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Thank you MombieZombie. Our cancer is virtually the same and I agree with all of your points. My biggest fear is lymphedema and failure of my reconstruction surgery. Have you had any problems with lymphedema?0 -
I haven't had any lymphedema yet. I'm supposed to check in with my therapist in about a week, now that I'm done with rads. I can tell that I've tightened up again, but the exercises and massage techniques she told me to use have helped minimize that. When I see her she'll measure my arm and see if there are any signs that I'm not catching. Some of the scar tissue that she worked on might be recurring in the underside of my upper arm. I'm going to ask her about it. I'm convinced that early preventative treatment was a plus for me. I don't have good body circulation and I retain water easily. I worried about lymphedema a lot before I met my therapist. I feel like I will be able to avoid it if I am cautious, but I don't plan to baby this arm as much as they recommend. My therapist knows this and gave me information on how to best go about "breaking the rules" in the activities that I don't plan to give up. Even though I haven't seen her for follow up yet, I think she's going to say I'm still fine.
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Denise - I too am ER/PR negative & HER2+. I did not have a complete response so had more chemo after surgery even tho I was clear. But with the HER2 my MO & the entire tumor board strongly pushed rads also, since Herceptin is the only other tx for now. I'm fairly sure my LE was from the second surgery - ALND - but the mild radiation fibrosis didn't make it any better. I have a great PT who's teaching me how to take care of both.
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hello I had my chemo teach and will be starting the 16th. Right now it is for tchp once every 3 weeks and just herceptin once a week is that what everyone else did? My nurse wasn't sure if I will be getting perjeta for sure die to my tumor being smaller than 2cm and the results from my pet scan yesterday showed no lymph involvement. There was noted a small area in my liver lit up but no lesions we're see and was nonspecific as the radiologist put it my dr said that happens in young adults and she is not worried about it they will keep an eye just in case. I was also wondering how everyone felt 2 days after their treatments sisters having her baby shower and I really would like to be there!
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Steph, I did TCHP every three weeks. Day 2 was the day after Neulasta, and I was one who didn't react well to Neulasta the first few cycles, so I didn't feel very good that day. In later cycles I did better. I hope you're able to go to your sister's shower and enjoy it.
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stephmoen: I feel like I'm the fluids advocate here. Any chance a newbie comes I have to say some things!
1) while getting nulesta shot, ask for fluids to stay hydrated on the days you won't have an appetite. This is a great time to be proactive.
2) try to suck on something to help the metal taste in your mouth not make you feel yucky.
that's all I can think of for now.
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Runningcello, your self proclaimed fluid advocate role is a very important one. I wish I would have gotten additional fluids earlier in my tx. It took a few rounds to figure that out. I drank lots of fluids, but that didn't work the way IV fluids do. Keep spreading the word!
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the nulesta shot is for low WBC? I would get that shot only if my count appears to be low or as a precaution? And do you mean ask for fluids on my chemo treatment days or on my off days. I'm sorry I'm just confused because I haven't started my treatments yet
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Neulasta helps your body make more WBCs. Some doctors always do it the day after chemo; others don't. It would be a question for your MO.
Staying hydrated is very helpful, I agree! I didn't have a port, so getting extra fluids meant another IV stick for me. I had extra fluids once via IV when my BP dropped due to dehydration.
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For me, I received the nulesta shot the day after treatment (in the beginning) then the doctor moved it to 2 days after treatment because that was the day I needed fluids the most. What I mean by fluids is just a bag of saline to hydrate your body once they give you the nulesta shot. It'll keep you in the chair an extra few hours but it's well worth it. Honestly, with the diarrhea from perjeta & the vomitting & nausea from the rest of the drugs. You will inevitably get dehydrated. My potassium was also low so theygave me an IV of that.
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Stephmoen…I get the Neulasta shot every time after chemo also. I have my chemo on Friday, and the shot on Monday morning. I think the window for having the shot is between 24 and 72 hours after chemo. I feel horrible the night after getting my injection. Then the next day is the worst. (So I really don't know if it's the chemo making me feel bad on the third day or if I feel so bad because of the Neulasta!) But I suspect the shot because of the extreme bone pain.
I hope you'll be able to make it to the baby shower!!
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Day 2 was always bad for me. If you do the fluids and take your anti-nausea, you might be able to go the that Shower, but I would have an easy way to get home if you need to cut out early. Don't be afraid to take care of you if you go. Oh, and I'll add again that our clinic has you take a Claratin one hour before the neulasta shot. For some reason it helps cut down the SEs.
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Neulasta - I was advised by BCO members to start the Claratin the day before Neulasa (which was my chemo day) and continue the Claratin for at least 5 days. It sure made a difference w/my bone pain. Be sure it's regular Claratin and not the "D" kind.
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ok thanks I really hope I will feel ok to go she's making it a gender reveal shower and I'm so anxious to see If it's a boy or girl and does anybody know what could keep your eyebrows and eyelashes from falling off someone had said there was a gel all natural you can buy I'm already accepting the fact my hair will fall out I'm going to go buy a wig next week and also the fingernails I have on gel polish now but I should take it off because I think it makes your nails thinner than they already are
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oh and one other question I thought I saw on a post about a type of spice that it supposed to make the herceptin work better anybody know what that was?
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stephmoen - Below is link to a list of things to help with chemo. There are also seasonal or monthly chemo threads (like April Chemo...) where there will be lots of folks going through the same issues. I read an earlier month before I started to see what was working best. I used Latisse for my brows & lashes. It's very expensive but I never lost all my lashes or brows. There is a "hair, hair, hair" thread that talks about this in some posts & probably a Latisse thread too. Don't know about the Herceptin spice. Good luck
https://community.breastcancer.org/forum/69/topic/706846?page=1
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thanks minustwo still new here don't know my way around yet
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Stephmoen - I discover something new on this site every day. Welcome and ask whenever you want. I'll be interested to see if anyone answers about a spice & Herceptin.
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Steph, I never lost all of my hair, eyebrows or lashes, without using anything special. So you never know. I lost ALMOST ALL of my hair and about half to two-thirds my brows and lashes.
I don't know of a spice that helps Herceptin work better.
The monthly chemo threads can be very helpful. I still feel very close to the August 2014 group, and many of us still post there. Having people to talk to who are going through it at the same time can feel very comforting.
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I didn't lose my eyebrows or lashes but definitely started balding at the center of my scalp so the hair came out at that point. I think it would have fell out regardless because once I shaved it.. Days later very little hair was on my scalp
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Was it a spice or a supplement? I mentioned CoEnzyme10 and it's better form--Ubiquinol. Does that ring any bells?
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Debiann, thanks for your kind words.
Stephmoen, I don't want to scare you prior to beginning this long journey.. But tchp sucks. With that being said, realistically, I think going to the shower that close after chemo will be very hard on your body. I couldn't attend my friends wedding because I was too tired to sit up.. you will need your energy and some people deal really well with tchp but I definitely did NOT. I want you to know you may want to give up at some points but it always gets better. My schedule was like this, Tuesday's chemo, Wednesday good day, Thursday the tiredness started to come & by evening it was in full effect until the following Tuesday. By Sunday I would be okay-ish.. But then diarrhea would take over from perjeta and I couldn't go out because dang when you have to go.. You have to go. I'm sure you will do much better than I did. I was hospitalized twice.. But I want you to know its a tough regiment but you have the ability to get to that finish line. I spent the 2 weeks when I felt semi okay with people and going out.. I recommend you do the same to keep your spirits up. Some people work during chemo.. I, thankfully, didn't have to - and had to differ from starting my program because I couldn't go to school during chemo. Again, I think im just a total horrible example.. But I give you a horrible example to show you it always gets better
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Honestly, runningcello is right. TCHP is pretty rough. It took the stuffing clean out of me, evening the drive home was tough. (hubby drove and we had a long winding back road to travel--where's my bucket!) But I know people (nice ones that are too nice for me to dislike for this-lol) who went to work through the same treatment that flattened me. So I hope you feel up to that baby shower Stephmoen, but be prepared to be there by speakerphone or something. Maybe they could set up a Skype for you!
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I'm going to give you a little hope. I have my infusions on Mondays and come home wired ready to take on the world that Monday, Tuesday, and the majority of Wednesday. It's due to a steroid included in my cocktail that takes a couple of days to wear off. I believe it's EMEND. Think positive. I hope it works out for you.
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Ah yes, I was wired the day after as well from steroids. Emend is an anti-emetic (anti-nausea and vomiting) drug. I had a form of dexamethasone in my IV the day of chemo, plus took it orally for 3 days, and that was what gave me the up feeling, like I had some energy.
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