Neoadjuvant TCHP - Post Results Here
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Glad you're getting down to the last few Herceptins, Stephmoen! My last herceptin caught me a bit by surprise. I had to ask the infusion nurses and my MO about it, and suddenly it was discovered that it was the last one. It was right before the holidays, so things were pretty crazy at that time of year, anyway. I went in to get one port flush, mostly because they weren't scheduling port removals before the holidays...
I figured I wouldn't want to be going in for port flushes every 4-6 weeks to keep the port in... And maybe I'll get a recurrence, but right now, I'd like to at least hope I will not! If I do, then I'll see if I can get another port, but until then, it's nice to feel a little less like a cancer patient! (Although the short hair still reminds me! At least all my toenails are back to normal by now!)
... I have some bruising around the incision to remove my port... I don't remember any bruising at all when it was placed. Not bad, though... It's a little pink at the edge of the bruise and I'm now a little paranoid about infection, but hopefully it will heal up ok. Doesn't hurt at all. A little tender only. But super nice to not have that tube running over the collar-bone!
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Hi April,
Who did you get to remove your port? My breast surgeon (the one that put it in) is who I'd think you'd go to...but since we switched insurance this month, now she's not "in network". I'm thinking I may just see what kind of cost we're talking about and pay out of pocket to have her remove it.
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Hi April And Lorie-
Were you sore after getting port out? Mine is coming out Feb 11. My hair is about 3 inches long too. So happy you are doing well and getting back to a new normal!!!
Patty
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Lorie,
An interventional radiologist put mine in and removed it as well. I would think your oncologist would be able to set that up if you aregetting treatment at a medical institution. Mine did.
Hope you are doing well!!
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Hi Ashley and Patty!! Yes, I'm doing well! I am very stiff in the mornings and feel like I must be 80 when I get out of bed. I think it is the Tamoxifen causing the joint stiffness.
Patty--my aunt told me when she got her port out she didn't even FEEL it...she was talking to the doctor the whole time. She said having her drains out was worse. But isn't that weird? Especially since I was put under to get the port put it IN!
I know its vanity talking--but I think I will "feel" much better when my eyelashes ever come back in fully!! Ashley, I did try eyelash extensions after you told me how much you loved yours. It WAS nice--but I'd feel a little guilty spending that much money every month.
And I'm going to give my hair another month or two before visiting a stylist to see what on earth they can do so I can retire my wig! Can't believe we've passed the year mark!
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lorie,
So funny about the extensions. I did it once and loved it but felt the same as you did about the monthly maintenance expense. It bothered me a little as well that I could never rub my eyes without worrying they would fall out! My lashes are still short as well. Do you think they will ever return to their original length?
It was strange being awake for the port removal and talking to the doctor during the procedure. I honestly think this was the worst part of the surgery. It didn't hurt at all. He showed it to me afterwards and explained where it went into my heart. How did I not know it went directly into my heart? I thought it was just inserted into the jugular vein. I am so glad I didn't know this until after they finished the procedure! Haha.
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Lorie - my BS insists on removing the port in the hospital. I can have a local so I expect to be awake, but since the lines do go directly to the heart, they want me in a place that can deal with emergencies.
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loriekg -- My bs offered to remove my port when I had my lx, but I wanted to keep it in for the remainder of my herceptin... It was my MO who set up the port removal. It's usually done by a Radiologist (md), but sometimes a surgeon (mine was placed by a radiologist, too, also in a hospital--different one, since I changed insurance, too... actually changed TWICE since dx! ugh! and have to change docs, but my MO and BS are still in network, thank goodness). Sometimes it's done in the office, but people say to try and get it done in a hospital if possible, just in case. Mine was done in a hospital and handled like a regular surgery, even though it's minor.
I'm pretty sure the removal should be covered! Good luck with that, though. Insurance coverage can be a royal pain!
I get stiff from the anastrozole... bleh. Not painful, though... just get out of chairs like a creaky old lady. But it goes away when I start moving.
I talked all through the port removal and placement. I swear, that "twilight sedation" doesn't affect me at all (I was out during my colonoscopy--they give you LESS for the port placement/removal). It's just getting the local--and that's it... but at least that worked. No pain at all.
My eyelashes came back in a month or so post chemo... but are fairly short and stubby. But I never had thick, long lashes to begin with. I rely totally on eye-liner! That works better than anything to make me look like I have something! Wearing eyeglasses doesn't help, either.
Yeah, crazy that it's been over a year! Time dragged, but then it sort of flew as the treatments started ending. Yayyyy!
PMR53 -- The area is a little sore/tender... pretty much like you'd expect if you got a cut (no pain meds necessary, though and it's not uncomfortable)... I can move my arms around and lift things, but I still want to be a little careful of that side, just so I don't irritate it. The seat-belt in my car hits right in that area, but I was able to drive OK. It's just got surgical tape over it... which they said to leave on until it falls off naturally... and a little bit of gauze with a dermatag over it so I could take a shower and not get it wet. I think I can take that off to wash after 5 days? It wasn't quite clear in the instructions... but the dermatag stuff (clear sticky film) was super in keeping the thing dry! I had the worse time trying to keep my port and lx incisions dry for those first few days.
raleighgirl -- Yeah... I kind of didn't want to know where that tube went! I know it went into a large vein, and that was bad enough. Kind of creepy thinking of all those chemicals shooting right into the heart, but then if it's in the bloodstream it would be hitting the heart anyway!
I know of several people who had their arm veins messed up by chemo. I'm SO glad I had the port!
MinusTwo -- Yeah, it's probably best to do it in a hospital... I've heard that recommended by several people. I know I felt better about having it done there.
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I don't think I knew the port goes right in to the heart either!! I would've guessed it went into a major artery… but since the whole idea of it makes me a bit unnerved, I never asked or read up on it.
Lash extensions and not being able to rub your eyes? YES!! I hated that…and not being able to remove makeup like I'm used –no baby oil, no cotton pads.
I never had any problems with my last insurance (Blue Cross Blue Shield) but since they dropped their PPO plans, we chose Scott & White. It was super stressful looking at the lists of doctors on each plan and trying to figure out who we would keep since no provider had ALL our doctors.
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loriekg -- Ugh... I've had three different insurance in 3 years... Left Kaiser when I got DX and the MOs I had there didn't seem easy to get a hold of and wouldn't prescribe "extras" like Perjeta, unless I got an outside doc to recommend it! Then went to Assurant Individual PPO, and they were great through my treatments, but then dropped their individual plans. Now I'm on Blue Shield, which has half of my former doctors out of network. It IS a PPO (individual) though. But I think these things can differ from state to state or between group/individual.
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Port removal seems to be going along OK. I worried a bit right after because of some bruising. Now there's a bit of a pull when I stretch my neck! Hopefully it will go away!
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Hi everyone! I just finished my last Herceptin. Wow, what a year! TCHP Chemo finished last June. The only "after effects" are that I still have brittle nails, and low white blood count. It fluctuates up and down between 2.4 to 3.5 . My last Herceptin visit (last Tuesday) WBC was 2.42, down a bit from the last visit. So...they sent me to a hematologist, who is not worried, said I should not be either but thinks just maybe it will go back up now that I'm done Herceptin. He did ask me if anyone in the family had any autoimmune problems (they don't). Anyone else have this experience?
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TexasToast, my WBC came back to normal levels but my platelets have been continuing to run a bit low. My doctor seems to often look for the worst, but ultimately none of us is worried at this point. I finished Herceptin about 6 months ago.
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Hi all,
I'm encouraged by your experiences with neo adjuvant. I go in tomorrow for a PET and to perhaps start the cycle. I've heard such great things about the results, so I'm very hopeful. Thank you for sharing your journey.
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asher, best of luck to you. Within two cycles of chemo I could feel the tumor shrinking, and halfway through they couldn't find anything via ultrasound. I ultimately had a PCR and showed no evidence f disease by the time I had surgery. I will hope for the very best for you!
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Thanks, Cassie
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Just got the final pathology back. I had a complete response to chemo. There was no cancer left.
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Skittlegirl - wonderful news. Contrats!!! Will you stay on Herceptin? And maybe Perjeta too?
I chose to pass on continuing w/Perjeta since the Herceptin had lots fewer side effects.
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Skittlegirl!! That is FANTASTIC news!! Makes it all worth it, right?!
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That's incredible, Skittlegirl
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Congrats Skittle!! That is fabulous news. How are you doing after MX? Your surgery info doesn't say if you did reconstruction? Celebrate the beast is gone !🎉🎉😇
Hugs
Patty
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Thanks ladies.
Yes, I am still on Herceptin (no more Perjeta) until the fall.
Yes, definitely makes the chemo worth it. Thank goodness it worked.
No reconstruction yet. I still have radiation to do and the PS wants me to be a year out from radiation before reconstruction. So for now I am enjoying the ability to go braless.
Feeling all right after the BMX. Feeling a lot better than last week (1 week out). Fairly good range of motion and hoping to get my last drain out today.
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The port goes in to the jugular. Mine was inserted and will be removed by my surgeon in the OR under sterile conditions. I truly would not accept any other way. Please be careful.
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hello guys,
I finished my last TCHP treatment March 1st. I had my mammogram and ultrasound done and the pathelogy reports showed that my 2.5cm tumor is gone! The six rounds of TCHP hell was well worth it! I'm scheduled to do my lumpectomy on the 30th of this month followed with six weeks of radiation. I'm so happy to be halfway finished with this journey and I am also so very grateful for you encouraging group of women.
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GREAT news Lind and Skittlegirl! So happy to hear the good news and praying I will soon get good news as well.
I completed my 6 treatments of Carboplatin and Perjeta, plus the weekly Herceptin during those treatments. I was unable to take Taxotere after 2 rounds (second one at reduced dose) so Oncologist switched my taxtane chemo to Abraxane weekly and I did well with it until the very end. Had to skip last 2 weekly doses due to neurapathy in hands and feet. I see surgeon tomorrow and am not sure if he will order scans or just set up surgery. My original tumor was first stated by radiologist as about 2.5 CM but then surgeon said at least 4 CM and Oncologist said at least 5 CM after PET scan. No clean margins and possibility of multi-focal (other tumors behind primary). I can still feel the lump but instead of a small avocado it is like a large grape! I was hoping for nothing palpable and am praying for a PCR but don't think I will know that until surgery. Praying I will get great results as well and so very happy for all you gals who have had a PCR!!! I started on the 3 week dose of Herceptin last week and have had my first follow up Echo and so far so good so I'm really praying I can continue on that for the next 8 months. I will update status when I get news. It's so encouraging to read of so many great outcomes to this protocol! It sure was not an easy regimen but well worth it if a good result!!! Wishing you all the best!!!
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Grace, How good to hear the tumor has also responded well!
I am in treatment 2 of 6 gleaning much encouragement from your stories. My large tumor has also shrunk considerably. I'm elated! I need to keep that focus and be grateful that there are treatments to actually do such things instead of being discouraged by the SEs. Thank you for your success stories
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Tina so glad you are feeling a big reduction in tumor size after 2 treatments! It is not easy but you will make it through and yes.... the results are incredible with this regime! It is worth all the side effects and all the little issues that arise along the way if you can have great results, even with a large tumor! We are about the same stage I think, and tumor size very similar and I have had a huge reduction in tumor size! Hang in there and I am praying you have a PCR as well as so many others have!!!!
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great news ladies I still felt a thickness after my 6 treatments but surgery proved I also recieved pcr..remember it doesn't alway kill DCIS off although it did on mine dr said that doesn't always happen but you still have great survival rates!
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Question for you guys...
Today I had an appointment with my MO. We were talking about me starting Tamoxifen soon and she made a comment like since I didn't get PCR from my THCP chemo they might want to start my tamoxifen during radiation. If I had achieved PCR they would wait to start tamoxifen after radiation.
Has anyone heard this before?
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Has anyone had an experience where their tumor has shrunk and then started to grow again
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hi
I'm new here. This is the regimen of chemo I had for my breast cancer. It was awful. I had every side effect possible, was hospitalized once, had the Carbo pulled due to potential long term kidney damage, needed routine IV hydration and 2 awesome blood transfusions. I did 6 rounds of chemo, from October 2015 to January 2016. Then I had a double mastectomy at the end of February 2016. I'm doing well now.
My tumors definitely got smaller during this course of treatment, I saw the mammograms and the MRIs for side by side comparison. I'm still taking the herceptin until the end of September 2016. I also get Lupron shots monthly.
When they did surgery some small micrometastacies were found in one lymph node. This is concerning to me because there was no indication of nodal involvement on any tests. I freak out a little because I did neoadjuvent chemo and it was explained to me that if the chemo does its job there is no 100% way to know just how far things had spread.
I guess I'm just kind of an emotional mess these days. Since I got through the super shitty stuff, now I have a lot of recovering and waiting. And the thinking! Has anyone had these types of experiences? I can't be alone...
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