Neoadjuvant TCHP - Post Results Here
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Hi Trisha. I suspect all of us can relate to what you've written. I don't have any sage advice, but I did want to say that I can empathize.
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Hello Trish! I too think we all can relate in one way or another if not all ways! I too had just about every side effect to this neoadjuvant therapy, but I made it through and am thankful it's behind me. I had to switch from Taxotere after 2 rounds to Abraxane weekly and had to drop the last 2 of them due to fairly severe neurapathy in feet, and some in hands. I did manage to finish everything else. My tumor decreased in size from 5+ CM to 2. I was hoping for 0 but that's what my surgeon estimated it to be. I thought it was more like 1CM myself but figured he knew better. He did not want to do an MRI after treatment and I only had a PET before treatment so not a whole lot of certainty on anything for me either.
I just had bilateral mastectomy April 6th and came home the next day. I'm sore but not in agony at all. I have not gotten my pathology report yet so I too am anxious to hear about my lymph nodes, because there was nothing that showed up on the PET scan prior to treatment, but I later found out that really didn't mean much as the PET does not show up anything less than 2MM. So who knows whether there was any node involvement. After trying lymph node mapping for 2 hours prior to surgery, the technician gave up because she could not get a good enough picture to map the nodes, but the surgeon was able to use dye while I was in OR and did find the sentinel node and removed it plus one more and sent them off for testing. I don't know that I'll ever really know since doing the neoadjvant treatment it's possible all cancer cells that might have been there could be dead now, in which case I'll never really know if they were involved or not. I guess it's just something we have to live with. I am thankful the worst is behind me and have been told I'll have to do radiation as well, so that and finishing Herceptin lies ahead, but that should be a cake walk compared to this chemo regimen!
Wishing you all the best and peace about the results! At some point we need to be able to just live with what we know, and pray about all we don't know and can't control. We are right there with you!!!0 -
hey guys.
First off thanks.
Second I met with the breast surgeon today for 1 month post op. She said if you're young the highest chance for recurrence is in the first 2 years after completing treatment. She also said that neoadjuvent chemo will attack the lymph nodes last, so for me, although my cancer is grade 3 aggressive, it's good that it was only in one of 30 nodes.
Unfortunately for me, my occupation is as a family therapist. I'm licensed in my state and am waiting to become independently licensed. That being said, it is impossible for me to ethically provide services to others while I'm such a mess. Has anyone else had trouble working during all of this?
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I don't post often, but read all the posts. After finishing TCHP Oct 22, 2015, I had a PET which showed my tumors (two) had shrunk about 60% and my lymph nodes (two) were clear. However, after mastectomy in Feb. 2016, BS told me she also removed one obviously cancerous lymph node which did test positive. That was very concerning to me because the path report said the lymph node was 11mm! It grew that large that quickly (3.5 months) after TCHP and declaration of clear lymph nodes? So, now MO has started me on AI before radiation and she probably should have started me sooner.
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I'm so sorry to hear this concerning news Bjsmller! I can only imagine how you feel after the great response to your neoadjuvant therapy! I wonder why the Dr waited so long to do surgery after your chemo? Especially since a bone met was found, I would have thought they'd want to do surgery right away. My surgeon waited 4 weeks after chemo for my surgery and I was worrying even then because the tumor did not completely disappear. i still don't know the results of my pathology but since no mets were seen I'm still assuming it had not spread so hoping and praying the lymph nodes he took out are clear. Sending hugs and prayers for you!!!
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Thanks, Grace. The bone mets were found early on and MO wanted to be sure they were necrotic, so she recommended radiated them after chemo. That plus scheduling issues are what delayed my surgery. I'll be starting breast/axilla radiation soon and supposedly that will kill anything left behind. I hope so. I'm so ready to be done with all this!
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Popping back in here...
Completed TCHP a year ago. Just had a physical and showed slightly low WBC. My doc thinks it is just a late result of the chemo... So yes, stuff like that seems to hand in for a while! I think my WBC was within normal before this...
I still get stomach rumbles more than I did before TCHP... it really did a job on my GI tract! But no major problems.
I've been SO happy since I got my port out. Aside from waiting for my hair to grow longer, I've felt pretty darn normal!
I didn't get a complete response, but at least my tumor shrunk a little. I just have to hope that the surgery took out the remaining and the radiation also...! But I guess I'll just have to wait and see on that. Life is uncertain even without this, so I can't complain that much.
Bjsmiller -- Too bad about that bad node! But if your docs think they can get it with rads, that's good. Hopefully rads will be quick and easy for you. I found everything to be easier than chemo! It all went by very fast. You'll be through before you know it, I'm sure!
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April so glad you are feeling so good 1 year out!!! What an encouragement to us all! Interesting that your WBC is a little low but I've heard all sorts of strange long term SEs of chemo. Just glad you are feeling so well!!!
I got my stitches, staples and drains out day before yesterday and that feels sooooo good! The path report had also come in but the Dr did not have time to explain it then so I have to see him Tues morning. I asked for a copy of the report and it basically states that I did not achieve a complete response as there was still live cancer in my breast but it had shrunk from 5+cm to a multi-focal tumor with the largest dimension 2.7cm. The good news is that the 2 lymph nodes he took (sentinel plus one) were both clear. I imagine when I see the Dr Tues he will be recommending radiation as he had told me to expect that no matter what they found inside. So I feel like I'm nearing the finish line with all this, although I know I will have to be starting hormone therapy as well, and of course I need to finish my Herceptin. I too am feeling much better just being done with chemo! I still have problems with neurapathy in my feet and hands, and my nails are still a mess, but basically I am feeling much better!
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I had TCHP neoadjuvant therapy, a year of Herceptin followed by radiation. When the path report came in after surgery, I was a little disappointed. Seems the large (5+ cm) tumor had shrunk by about half, but the tiny spot that could only be detected by MRI ( had mammogram, 3D mammogram, ultrasound, and MRI) did not go away. Chemo was grueling for me. Hydration was a problem, diarrhea so bad I couldn't leave vicinity of a bathroom, shaky legs that were so weak I couldn't walk farther than about 25 feet, multitude of side effects but I powered through only to be worried about the results. Sailed through radiation. But because of tumor response to chemo, I am anxious all the time even though I had clear margins and supposedly (who knows with with neoadjuvant chemo) no node involvement
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Hi April25 and TCHP Sisters. I completed TCHP 13 months ago and Herceptin in December. The biggest side effect is fatigue. I have little reserve at the end of the day. I saw my MO for a checkup and she said that the chemo and the 5 surgeries are the cause and that it was too soon to feel "normal". I tried Armidex and it was causing headaches and insomnia so switched to Femara. It was a hard year. Glad it's over. My hair grew back and I am trying to start anew. I hope everyone is doing well
PMR53
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had 6 rounds of TCHP June 2014- oct 2014. Had a lot of nausea ,unable to eat for 10 days following treatment each time, liquids only. No neuropathy. Lumpectomy nov 2014, no node involved. Radiation January to February 2015. Finished herceptin june2015. No issues with Herceptin. Have had hot flashes since first chemo, still have several a day. Tamoxifen, ok, no weight gain, but I'm careful with diet. Have had usual followups with surgeon and onc, all normal so far. Feel very good mostly. Will run my first half marathon this weekend. Complaints: terrible shoulder pain for A year . I have PERMANENT Hair loss. 18 Months after chemo I only have 30% approx hair, have spent thousands on treatments and wigs. Considering Joining class action suit
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Just thinking about this site, and thought I would stop in. I am now 16 months post "crappy" chemo. I ended TCHP in January 2015 and Hereceptin in September 2015. Had mx in February and have had reconstructive surgeries in August and December 2015. I still have no nipples, but not in a hurry to go under general anesthesia again anytime soon. I am still cancer free - and I've just started feeling comfortable saying that. I would only say that I am clinically cancer free before (as they cannot examine all of the tissue from the mx - it is a representative sample). I still don't feel that all of my hair has come back, but it does look like a normal female pixie cut now. It did take a long time for the top and front of my hair to fill in. I still seem to have issues with my eye lashes or eyebrow hair falling out if I rub those areas, but they are filling in. I still have one fingernail not quite attached all of the way, the rest are now attached, but break/split easily. I haven't noticed any long term GI issues as some have posted, but I have crohn's anyways so GI issues were my life before cancer. I started running last summer and could tell I couldn't get my endurance up while on the Herceptin. Now that the herceptin is done, I'm finally able to run a 5k - couldn't do that during chemo. It does seem to be that Her2+, ER/PR- cancers react much better to the TCHP. I asked my Dr. about recurrence rates and she wouldn't comment, it will be interesting to see how recurrence rates are with the TCHP. I will end my rambling now.
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I'm finishing up round 6 of TCHP neoadjuvant in 2 weeks and it can't come soon enough. This has definitely been the hardest thing I've ever done. Lots of dehydration, Heart palpitations, IV fluids every 2 days the week after infusions, GI distress and no solid foods for 10 days after infusions.... The usual. My MRI just showed no activity with the contrast which is great news. Now I need to decide between a lumpectomy and 6-8 weeks of daily rads or a full left mastectomy. Considering how hard the chemo has been on my heart and that I already have a fairly severe arrhythmia, the thought of any damage from rads scares me more than all the chemo I just had. I'm wondering if anyone else faced the same situation?
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Myraknits - I hope your last chemo goes well. I just had my third "antibody only" infusion on Monday. I say antibody because my MO has me getting Herceptin and Perjeta, not just Herceptin. I didn't really have a choice between a lumpectomy or a mastectomy. I had 3 small tumors not situated close enough to make a lumpectomy a good option. I debated between a single mastectomy and a double mastectomy, and opted for the single mastectomy. Even with the mastectomy, there was still the possibility that I would have to undergo radiation. I think it depended on the results of the surgery, which convinced my BS and MO that I didn't need radiation. Good luck with making a decision.
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I have two more Herceptin only treatments, had a left mastectomy, no recon, and now I'm doing radiation to the breast area/axilla. So far, my heart function has been good while on Herceptin. Rads tx ends on June 15 and I have another echo on June 24, so I'll be curious to see if the rads have done any damage. So far, I feel great, so I think I'm okay.
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Barbara, I did basically the same thing as you and my heart function remained good throughout.
I was worried about left-sided rads, but ultimately decided to trust my RO and go through it. None of these treatments are easy on our bodies, that's for sure.
My biggest complaints these days are insomnia (or at least difficulty getting back to sleep if I wake up much after 4:30am), some lingering tightness through my chest area on the MX side, a couple of fingernails that still seem a little more prone to minor lifting, weaker fingernails in general, and chemopause that seems here to stay.
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I had right breast rads, so didn't worry about my heart. I believe they can angle things to avoid damage to the heart... but perhaps with some people or methods, it is more of a risk. I'd definitely ask the radiologist.
But for ME, rads was a total picnic compared to chemo! Seriously. I was HAPPY all during rads, because chemo was OVER! Also-- LX was easier to recover from. I was lucky and had clear margins, so that one procedure with SNB was it! MX would be a lot more to deal with.
I also have Bcups, and I think smaller breasts tend to do a bit better with rads--less stress on the skin, or something like that... So several factor should be considered.
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I'm wondering if being a bit more marginal (FISH) HER2+ might be a reason for a non-complete response? My Path showed HER2+ =Equivocal ... which sort of threw me for a loop. My MO wasn't even sure what that meant... thought that maybe the chemo killed the HER2+ cells?
My tumor started around 3cm and shrunk around a third after chemo. Definitely still had live cancer left...
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I just had my bilateral mammogram, 1 year post LX, (plus 2 weeks since end of chemo). All clear! YAY!
I never had a huge fatigue problem, but feel even less of that these days. My GI tract is still much more rumbly and has more heartburn than I used to (which was NONE--total cast-Iron before). Bowels were loose for ages, but didn't really inconvenience me. (During Chemo I couldn't eat anything for a two weeks each cycle--and had so much diarrhea and dehydration I was on 24 hour drips!)
Gained back all my weight (which wasn't all a good thing! At least not anemic any more!)
Leg neuropathy seems to have gone away. Nails all back to normal (I took biotin and other nail/hair vitamins all through).
I feel pretty much back to "normal."
My hair is around 3 or 4" long, but still mostly wearing my wig when going out, though. The top front is slowest to grow, which is annoying. But my hair was already thinning before chemo, so I can't really blame it on everything.
emrose1 -- There have been commercials here for lawyers wanting to take on taxotere permanent hair-loss cases, and of course there have been threads on this board about that. I'm sorry it happened to you!
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Congrats, April, on the clear mammo! The techs tell me they have targeted to miss my heart and lungs by zapping me from behind and not to worry, so I'm not. I really don't mind RADS either compared to chemo, mostly just the daily grind of going, but otherwise, it's a piece of cake.
I think equivocal means ambiguous, so the HER2+ finding may be on the border of positive or negative. I haven't gone back to check, but I remember asking the BS about something like that on my report when she went over it with me. She said, "Huh, well up here where it says "Postive" means you're positive. I'm still not so convinced. My tumor shrank about 60%, but MO expected a better response so maybe I'm not strongly HER2+ and just borderline.
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After meeting with the RO I've decided to go ahead with the lumpectomy and rads. She convinced me that the location of the tumor, about 2:00, the radiation will not even touch my heart. She said she can block the direction and shape of the ray. The only problem right now is that I'm on hold for surgery due to complications from TCHP. I was supposed to have my last round of chemo but after 5 weeks post round 5, I'm having heart issues so I have to go for an echocardiogram to see how to proceed. One more bump on this long and winding road
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Myraknits, glad to hear you've made your decision and a plan is in place, but sorry to hear of your complications. It's always something! Today is one year since my dx and it's been a roller coaster ride for sure, but I'm almost in disbelief that it will all be over soon. Hang in there, and you'll get through this, too!
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bjsmiller, thanks. It really helps to hear that! Sometimes it seems like there's no end in sight and these hiccups just seem to send the light further down the tunnel. Someday we'll be looking back on all this
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Myraknits -- Oh, that's too bad, having heart issues! But getting 5 rounds isn't bad. They might have you finish the last round if they think you can do it without any heart damage, but 5 might be enough if you have to quit. There were a few others who had to quit early due to heart issues. I didn't have heart problems, but I had lessened taxotere because of other SEs... (although the SEs continued to be bad, so I wondered why they just didn't keep me on the full amount???). Oh, well. (That might have contributed to my non-complete response? Or the equivocal /FISH Her2+? who knows?).
Whatever they decide--you got through MOST of your chemo. Surgery wasn't bad for me, and radiation was bad at all, either. I'm a year post surgery and am feeling pretty darn normal. You'll get there soon!
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April, thanks. I was hoping to get the results from the echo today but I'll have to wait till Monday. If there is damage, my MO said he may put me on an alternative chemo for the rest of the year rather than the Hercptin or the Taxotere. I can't imagine any cancer cells surviving the 5 rounds I've already had. Heck, I barely survived
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Hi all, last TCHP on March 22 followed by bilateral mastectomy on April 19 and pathology report came back as NED and I had a complete response to Chemo! I start 33 rads on June 14. My oncologist was so pleased with pathology report she did a happy dance. So all of the side effects of the Chemo were worth it. I wish the same for all
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Lrb, congrats!!!
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Lrb3665, great news for you! Congratulations.
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I finished neoadjuvant on June 9th. I still have Herceptin until February. I have surgery on the 5th. According to my MO, if he had felt the affected breast on a woman not diagnosed with BC, he would not be concerned that there is cancer. They are still doing axillary node removal on the right side. I guess my question is, is it typical to get some sort of scan to ensure there is no lingering cancer, or do they just trust the chemo & rads will get it all? The uncertainty of it all is a little unsettling.
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__asher__ - my MO told me that I'll be getting an MRI post-chemo to check on my progress (if you're doing the every 3 week cycle, I think they wait until 3 weeks after your last chemo to let it do its thing, but I'm not 100% certain). Depending on your particular circumstance, they may also do a CT scan - I think they're doing a CT scan for me because I am LN positive and they found additional LNs that could be impacted in the CT that were not in the MRI.
That's just my experience so far - but it seems worth asking your doctor for at least an MRI so they can measure the effectiveness of the chemo prior to surgery! Sometimes they use that info to determine if rads are recommended.
How was your experience with TCHP?? I start tomorrow!!
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Thanks, DistrictGirl.
I had a relatively easy experience with THCP, although I know of some people who worked while doing it & I don't think I could've managed. Some people have severe neuropathy, which I didn't have any. I didn't have severe diarrhea, either. I was very fatigued and had nausea, however. The effects can be cumulative. So by the time I was done, I was so ready to be done. Some things that benefitted me were 1) asking for Claritin for Neulasta shots. The Neulasta stimulates your WBCs so your incidence of illness isn't so bad. In turn, it can cause bone aches. Claritin is good for that. 2) Go in for fluids if you are given the option. Our chemo clinic allowed for us to go in for IV hydration and that really seemed to help. 3) Suck on ice chips while getting the Carbo & Taxotere. It will help with preventing your taste buds from completely dying. You may not be crazy about eating, but the absence of taste buds makes it even worse
Good luck on your treatment! You got this. 0 -
I could only do 2 of 6 tchp cycles because my wbc would never go back up and were too low. I was even getting Neulasta shots. My last tchp infusion was April 5th and they still have not gone up. I had a bone marrow biopsy, extra blood work, and an ultrasound to make sure everything was ok and those all came back normal. So I guess I was just very sensitive to the chemo. They pumped me with neupogen to get me through the surgery.
Even though I only had 2 infusions, I had a complete response (my original tumor was 1.6 cm) which makes me feel a bit better about not finishing. I really wanted to do all 6 and throw everything I have at it. They are having me finish up my regimen with Herceptin/Perjeta only and then just Herceptin.
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