Response to neoadjuvant chemo?
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Hey there... Yes! getting my pathology report after surgery was absolutely the low point of my treatment. It was incredibly discouraging to have gone through chemo only to find out that it didn't help all that much. I am by nature an overachiever and it was hard to admit that I was just a C- chemo patient! I wanted the gold star... but oh well!
One of the hardest parts for me is feeling like I'm not doing enough post-chemo to prevent a recurrence. I know that the hormone therapy is important, but it just feels like I should do more given the poor chemo response. I do take comfort in knowing that I had 8 clear nodes above the 7 positive ones. But what about any cells that may have been in my blood stream? If the chemo didn't do a great job of stopping the cells we knew about, I can't imagine that it did a good job on any others that we didn't know about. It is weird, in some ways I wish they would go ahead and think of me as Stage IV and just keep doing treatment instead of me sitting around and waiting on it to come back. Does anyone else feel that way?
Mom... I started hormonal therapy right after the mastectomy. So I did ovarian suppression and the AI during radiation. Once I was done with radiation, I had my ovaries removed. I'd be curious to know why they think you should wait until after rads are done.
"I already got three opinions from reputable oncologists on Chicago, and they all didn't recommend more chemo (I specifically asked about Xeloda/Create-X) study, and they said they would only consider that if I were triple negative."
^^^ that is exactly what my MO said when I asked about Xeloda. I do feel better knowing you are hearing the same thing.
BUT I'm planning to ask about the PALLAS trial when I see my MO in December. I'm being treated at the only NCI center in my state, but the trial is not offered there. It looks like it is offered at a regional hospital a good distance away from me. I wonder how that will work? Also I know that the stage IV ladies stay on the drug as long as it is working... but I wonder what the regimen is for earlier stages?
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reflect- I have had a wonderful experience at Dana Farber. I went there for a second opinion, but liked my MO and BS so much that I decided to travel for treatment. Its been great. I initially was going to do a trial, then found out that I wasn't eligable (but it was good to find that because it changed my course of treatment.) I will actually continue at DF for radiation (beginning soon). At first there was some thought I could do a lumpectomy with my multi-focal, but tests revealed there were a lot of tiny spots that seemed cancerous so I opted for the mastectomy. My surgery went really well, though, and so far so good on recovery.
I am going to ask about the PALLAS trial. Glad to see Dana Farber is an enrollment location.
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Hammie, yes, I feel the exact same way! That's why I'm getting third, fourth, and fifth opinions! I feel like a druggie shopping around and begging for more chemo! I received opinions from Rush, University of Chicago, Northwestern, and even got a remote second opinion from my sister's breast oncologist at Sloane Kettering. Consensus of no more chemo and Palbo trials. I'm sure I'll hear the exact same things at Mayo next week, and at that point I just need to close the book on other opinions and trust what these very smart doctors are telling me. They all say that the biggest weapon in our arsenal is the hormonal therapy (AIs)...but like you, I feel like we should still do more! The residual cancer is what really got me down and made me feel really scared (especially the nodes. Ugh). I had a "clinical complete response:" tumor and node no longer palpable and the pre-surgery scan was totally clear (could not see breast tumor anymore, even though it was still 1.4 cm). I just don't get it....how it seemed clinically that I had a great response, when in reality I didn't. I think mentally it would make everything seem so much more worth it if we had really good responses. But we didn't, so we have to figure out where to go from here.
And yes, Hammie...I do feel that way about continuing treatment. I feel like you can tell they think we have rogue cancer cells traveling throughout our body (that's why we were treated so aggressively), and we know chemo didn't kill a significant amount of our tumors in breast and nodes--so why should we feel secure/confident that it killed the roaming cells? I'm with you; it's like we're just sitting and waiting for it to come back, where my philosophy is let's use any available treatment to try to destroy those cells before they organize somewhere! It feels so frustrating. I so wish we all had gotten really good responses from chemo and weren't in this situation.... but we all seem to be doing everything we can.
Xyzeng, that's wonderful that you are getting both Ibrance and something similar to Xeloda! If I had the opportunity, that's exactly what I would do---but doesn't seem like many oncs here in the U.S. will prescribe Xeloda for ER+ and they definitely aren't willing to prescribe Ibrance outside of a trial setting. Happy for you that you have that opportunity.
Man, do I hate cancer. The most awful part of it is going through all of this hell...months upon months...and no one being able to tell us we're cured or that we'll be okay. We can go through all of this and it can still come back. Hard to wrap my head around, and I struggle thinking about the future. I have four little girls and I just get so scared.....I hate thinking about the cancer "what ifs" and just want my life back. Sorry, don't mean to be a downer.
I'm looking forward to hear about everyone's progress. Let's keep this thread going since many of us are on the same timeline in a similar situation.
And please, others who had residual cancer after chemo, please share your story!! We'd love stories of hope and encouragement!
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Mom of twins, yes I did have two positive lymph nodes in my post surgery path report. Not under my arms though, the lymph nodes in the breast. I guess we look for things to feel good about. Having gotten all the cancer out of the nodes under my arm felt like a positive. Any post chemo cancer is distressing though. Glad to hear others in similar circumstances also doing well.
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Hi Mom of twins, you've described my fear. My MO wasn't certain about Xeloda until more data from Create-X emerged and only suggested Ibrance initially. I'm glad he eventually recommended both.
Will you be on Prolia? That helps to reduce risk too.
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Xyzeng,
Can you tell me what additional data from Create-X has emerged? A couple MO's I spoke with were skeptical of the study since it hadn't been published in a journal since they presented at the symposium last December. Would love to read about more data. Please pass along any info you might have!
I plan on taking Prolia. I'm getting a DEXA scan next week, and my MO said insurance might not cover Prolia if those results are normal. I told her I would be willing to pay put of pocket for it; so one way or another, I hope to get it.
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I'm IBC so a bit different than most. I did A/C (Adriamycin/Cytoxan) neoadnuvant 7 yrs and Taxol adjuvant 7 yrs ago.
For me, there was never any thought of a complete response but to get it to shrink and form a 'lump' with good margins (IBC forms as 'nests' or 'bands'). 2 weeks after 4th DD A/C, I had a UMX. A/C had done what was wanted - shrink and get good margins so Surgeon could 'get it out'. 3 weeks after UMX, I started Taxol. Then rads a week after last Taxol.
7 yes ago last Aug. I was DXd and started neoadjuvant A/C - still NED (No Evidence of Disease). My TX plan was different than almost other IBCers as most will do 2 different chemos neoadjuvant and no adjuvant - but neoadjuvant and adjuvant worked for me.
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Love this, Kicks!! So inspiring and thanks for sharing!! I'm so happy you're doing so well.
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I was IBC like Kicks and my oncologist was keen to get my chemotherapy started immediately. Chemo lasted 18 weeks, and was one day each three weeks. There were three lots of FEC (Fluorouracil, Ellence, and Cytoxan) and three of Docetaxol. The tumors were shrinking after the second infusion and were hardly palpable by the end. However, the pathology after showed clear margins, but that I didn't have a pathologic complete response. Twenty-five rad treatments followed. I'm now two years post treatment and NED.
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Hi Mom of twins. I'm not sure what he was referring to. I thought then that it might be the data from the presentation, but that can't be new data. Essentially, he no longer thought only triple negative patients benefited from the Xeloda. Have you considered writing to the researchers?
Hi Hammie28. I'm not sure how long we could stay on Ibrance. My MO intends to find out more from a researcher who's involved in the palbociclib trials. From the Ibrance thread, I understand that some Stage IV patients have been on it for as long as 7 years.
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Mom of twins...I'm a mom of twins too. That's quite the rodeo, right?
Diagnosed in 2011 as IDC with IBC features--there was a lot of tumor in an area of skin right over the lump. We started with a lumpectomy, since no one gave that area of reddened skin any attention, but when 6 lymph nodes tested positive my team of doctors went into high gear. Taxotere/adriamycin/cytoxan chemo, followed by unilateral mastectomy, 38 radiation treatments, Xeloda/Navelbine chemo, now Letrozole.
The pathology from the mastectomy came back with clear margins but active cancer remaining in the skin of the breast, so no PCR for me. I was disappointed but not surprised, since my tumor was very high ER+.
Next month it will be five years since my diagnosis. I'm doing very well, and many days I don't think about cancer at all.
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sbelizabeth,
Thanks for sharing the details!! Twins are so much fun, right? But yes, it gets a little crazy and a lot of work...but so worth it!! I think, for me, having young kids is the hardest part of this whole cancer thing. I've had this feeling of complete and utter desperation to have the privilege of seeing my beautiful girls grow up. I want nothing more. I just pray I have that opportunity. I'm sure a lot of you feel the same way and that's why all of this uncertainty is agonizing.
Sounds like you're doing so well!! I'm so happy for you, and wish you many years to come! How did you get Xeloda/Navelbine after surgery? I would love advice on how to make that happen. Not one oncologist I've talked to has budged on this issue (feel free to PM me too about this, if it's easier). I just want to feel like I've given myself every shot possible!
Anyway, please share more stories!! They're so helpful, especially to those of us who are fairly new to this journey. Thanks!!
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My oncologist was very reluctant to prescribe the Xeloda/Navelbine. I'd done a lot of research online and discussed the gepartrio trial with her, although my own cancer characteristics didn't exactly match those in this particular study. It also helped that my cousin's husband is a big-shot breast cancer researcher and he advocated for me as well. Eventually we won her over.
However...plug this consideration in, as well...cancer cells, like rats, are smart at evading capture and execution. When breast cancer is Stage IV, the treatment process is to give a chemotherapy drug until it stops working--the cancer cells have figured out how to overcome the chemo--and then move on to the next drug. It could be that by blasting my system with Xeloda and Navelbine, if I ever DO progress to Stage IV (Heaven forbid) these drugs might not be effective for me.
I can see by your signature that you've thrown the kitchen sink at your own breast cancer, and I don't know...this might be the point where you need to trust your doctor, do your best to eat healthy and exercise, and live your life. Believe me, I know the fear and uncertainty in your heart. But there are better days ahead. I promise.
Please feel free to PM me if you want. I'll be here for you.
(edited for typos)
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sbelizabeth,
Thank you so much for the information, kind words, and encouragement. It really is just hard to let go of the control....and post-treatment is actually a difficult time mentally. I have to keep reminding myself that taking this little pill every day is "active treatment" and that I'm still fighting. And I might just take you up on your offer to PM. I appreciate it so much.
How's everyone else doing?
Also, bumping to hear from more survivors with residual disease after neo-chemo!
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Hi Mom off twin, I am also a survivor with residual cancer after neoadjuvant chemo. My cancer responded from 5 cm to 3.5 cm. My surgical margins came clean. I was given more than five weeks of radiation. My active treatment finished on 11/2015. I am on tamoxifen doing good so far and doing a full time job. Best wishes and gentle hugs.
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I'm with you Mom of Twins and Hammie - can't bear not doing more when it seems so unlikely I am clear of cancer - we know treatment left loads behind. Very hard to move past that. Am gutted that PALLAS trial doesn't seem to be enrolling in U
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SSinUK,
Yes!!! It's hard to let go and not do more. Any chance you can just get Ibrance outside of a trial, considering it's not being offered there? The trial is a great option, but only some of us will actually get the drug. I wish I could do something more that was a definite, like Xeloda!! I hate this..
Meg. how did your appointment with your oncologist go yesterday? Hope it went well!!
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My oncologist appointment went well, sounds very much like she shares the opinion of the opinions you have gotten. She was willing to discuss options, although as we already know, some of these drugs just aren't available outside a trial or stage IV. Or insurance won't pay for them- although I would pay out of pocket if there was something that made sense and insurance wouldn't pay.) But she strongly feels that the Aromasin plus Ovarian Suppression is the most powerful weapon we have in the arsenal from a statistical perspective on recurrence for my cancer. My pathology came back with my remaining tumor being extremely estrogen positive and yet HER2 equivocal (whereas it was strongly HER2 + before chemo.) So the thought is that the HER2 parts shrunk away during chemo, the rest was shrinking but not as quickly. And more chemo may just continue to have the same effect. I have been having zero menopausal symptoms during chemo. So she feels that the best action is to try to get the estrogen out of the equation asap. I will also continue Herceptin. I still have radiation to go, so while on radiation, I will try the ovarian suppression and AI and see how it goes. But I'd love to continue to see what others are doing.
Mom_of_twins I am also seriously considering going ahead with ovary removal once I get done with radiation. Yours was recent, how was it? Did your insurance cover it?
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Hi Meg! Thanks for the update. I'm glad your appointment went well. And although we'd all love to do more, I suppose there is some comfort in the fact that so many reputable oncologists are providing the same recommendations and believe that hormonal therapy is our best defense. But I'm with you; I would pay whatever it took to get something more if it could reduce the risk of recurrence. Frankly, I wish I could just get the Ibrance outside of the trial, but I know that's just not how it works and it's not an option. I think it's a really good thing that your post-chemo tumor was HER2 equivocal--makes me think that the chemo killed the really aggressive stuff! I'm just wondering, did your oncologist talk statistics with you? Did she discuss your risk of recurrence percentage? I haven't gotten a really good feel of what my risk is, and am just wondering if others are given estimated numbers or percentages.
As far as the ovary removal, I did attempt the surgery but it wasn't completed. During the procedure, I became severely bradycardic and they aborted. PLEASE don't let this scare you...it was just a rare fluke. And I swear, I'm always the fluke. It's a fairly routine outpatient procedure, and the vast majority have no problems with it at all. So, in the meantime, I got a Zoladex injection and started taking Anastrazole. I'm going to try the surgery again after the new year. But I was told that suppression and ablation are equally effective, so there's no rush on the surgery. I just wanted to get everything done in 2016 and have it all behind me. Didn't quite work out that way, but such is life. But yes, insurance did approve the surgery and I imagine yours would, too.
Anyway, thanks for keeping us updated. I'm going to Mayo on Tuesday for my last outside opinion, and at that point, I just need to find peace and move on if she says the same as the other oncologists I've consulted with. I will let you know how it goes.
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Mom_of_twins Thanks for the info on the oopherectomy. I am leaning in that direction, have to get through radiation first, so it will be next year before I can get it done.
My oncologist does not really discuss my personal odds- she will talk about stats when we are discussing studies, risk reduction from a particular treatment, etc.And if there are things that have similar percentages, she will take them to the tumor board for discussion for my case. But she does not give me an overall percentage for recurrence for me. We did discuss it briefly, but between two types of chemo, herceptin, radiation and now the ovarian suppression, there are a lot of variables in play, so its hard to pin down the math even if she were willing. She likes to say we have thrown everything and the kitchen sink at this- so my odds are as good as they can possibly be. I also feel like my surgeon was excellent and I do believe surgical skill comes into play with recurrence risk as well. So I am trying to be ok with just knowing that everything in the arsenal was used. And yet I don't feel like I have been over-treated at any point. The other day my daughter asked me about her friend's mother, who had all the same treatments I am having, yet her cancer came back and how do we know mine won't as well? It was all I could do to not just cry at that moment and agree with her and say " that thought scares me every day" -instead I told her that we are doing every single thing we can but we never know 100%. And then realized later I basically said the same thing my oncologist says to me. The part that my husband is struggling more with is the lack of scans. I expected that since I have been on these forums and know that once you complete treatment, you pretty much just sit around and wait for symptoms. By the time this cancer had symptoms, it was very far along as far as lymph node spread, etc. so thats not comforting. Although even if my oncologist agreed to frequent scans, I am not sure what scan I would want that would even make me feel at ease.
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meg2016 - be careful what you wish for re scans...I'm now on 3 monthly PET scans because my Onc thinks it's so likely I have more cancer - and I can tell you scans that often are NOT reassuring they are mental torture that divides life into tiny chunks. It's like knowing you have an appointment with a firing squad every 3 months and having to constantly revisit the fear that some got away.I'm currently hanging out on the boards as I have a scan in 2 weeks and scanxiety is building. I wish I was back in the place where they'd only scan for symptoms.
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SSInUK- that is a really good point. I think my husband would feel better if I got the scans.... but I would probably be higher stress. Just on a couple of scans I did get when I began this process, I had false positives which continued to cause stress during treatment. And then watch and rescan, etc. I am not doing PET, just a periodic chest CT. Those are stressful enough and they are confident there is nothing to worry about. But that doesn't mean we don't worry.
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Hey Meg -- I did have my ovaries removed back in June. My last radiation was June 1 and my surgery was June 13. I had ovaries and tubes (be sure to have your surgeon discuss removing tubes as well) removed. I am happy with my decision and wanted it done as soon as possible. I did Zolodex for OS for four months and I didn't not notice a difference in the symptoms between medical and surgical menopause. The recovery went smoothly and I'm happy not to have to return to the cancer center for a shot each month. I didn't have any issues with insurance approving the surgery.
So I had an appointment with the "survivorship clinic" on Friday. I met with a nurse practitioner who basically reviewed all of the treatment I had received and talked with me about how I was doing. She recommended that I begin seeing a cardiology for a post-chemo assessment because I received Adriamycin. She also recommended that I see an endocrinologist because my baseline DEXA scan showed osteopenia. I was really happy with both of these suggestions. I have been thinking that I should push to see a cardiologist, but had not even considered that I needed a specialist monitoring my bone health. She also told me that it might be a bit of overkill but that I should probably go ahead and have a colonoscopy. At this point, I figure I am such a statistical anomaly why not go ahead and have a colonoscopy in my 30's! Sounds like a blast. Welcome to survivorship! Oh! and I asked her about the PALLAS study and she researched it a bit and sent me a message after the appointment explaining that I amy not be eligible because I have already been on AI for more than six months. She gave me a number to call to discuss enrollment and I'm going to call tomorrow! Finally... she ran through a list of symptoms and I confessed that I've been having headaches all summer. She told me that her job is to listen and if I'm having headaches that warrants checking out, so I'll be having a head MRI soon as well. I'm not particularly worried about the headaches, I think it is just stress... but I will be happy to check them out.
I also see my surgeon next week. The appointment is a follow-up for the mastectomy but I am hoping to get my reconstruction surgery scheduled for early next year.
I hope everyone is having an enjoyable weekend. Fall has arrived where I live and it has been glorious!
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Hi Meg, my onco hasn't really given me a risk percentage either, and honestly I'm not sure I even want to know. I know I've taken every step possible to reduce whatever that risk is, and trying to find a sense of peace with that. That must have been a difficult conversation with your daughter. This is so hard on our families, too. And I think watching someone go through what we have, there's such a desperation that we're going to be okay. My girls are very young, so they have no idea what's going on. Easier in some ways, but harder because I need lots of time to see them grow up! And I agree about the scans. They cause so much anxiety, and the waiting and anticipation is torturous. Double-edged sword, I think. My staging scans showed a few things that needed to be followed, and I was a nervous wreck!
Hammie, sounds like your team is being thorough. I've been seeing a cardiologist all throughout treatment. Adriamycin is so cardiotoxic, that I think it's important to stay on top of it. I think being proactive with this stuff is so important, and plus AIs have cardiovascular risks, too. It's a pain because it leads to more doctor's visits, but also gives peace of mind. And speaking of staging scans above, they saw a mass on my colon so I had to get a colonoscopy just days after diagnosis! It felt like such a kick in the pants. The procedure wasn't that bad...the prepping is no fun. 😳 I'm getting my DEXA scan on Thursday, so we'll see how that turns out. I'm going to ask for Prolia regardless of the results. Any of you on Prolia? If so, what are your thoughts?
Anyway, everything about cancer is unfair. But we'll get through it!
Hope to hear from others, too! We can all use stories of hope from long term survivors with residual disease! Please post to tell us how well you're doing!
Hope everyone is having a good Sunday!
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I called and got additional information about the PALLAS study. Unfortunately I am not eligible. You must enroll within one year of diagnosis (my one year date was yesterday) and within six months of initiating endocrine therapy. I thought I'd pass this along so thateveryone is aware of the time constraints
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Hammie, thanks for the information. I'm so sorry you missed the time window. And for others' information, I think the PENELOPE trial is even shorter--they told me I would have to enroll in early November (which would be two months from when I finished radiation).
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Hi everyone! Well, I'm at hotel in Rochester, MN after a consultation at Mayo. Very similar opinion to other oncologists: she said endocrine therapy is the biggest weapon for my type of cancer.
She recommended a Palbo trial like the others (PALLAS); so I plan on enrolling in a couple weeks. I asked about Xeloda, and again, she said she would consider it only if I was triple negative.
She also told me that if Xeloda was prescribed, it would be sequential, meaning that she would have me take Xeloda for several months, followed by an AI--that they usually don't prescribe together. That made me feel better because I wouldn't be comfortable waiting 6-12 months to be on the AI.
She reiterated that I've done all I could (and more) to keep the cancer away. I think I'm ready to close this door on outside opinions (I've had 5 in total, and it's basically been a consensus). Now on to PALLAS and hopefully this cancer will stay away.....
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Mom_of_twins-- Thanks for posting this update! I do feel better knowing that they all seem in agreement. 5 second opinions is impressive! But you know you've done everything you can. I am also looking into PALLAS, but I have to get through radiation first. Also considering oophorectomy. I just started Lupron shots and Aromastase. If I have 5+ years of monthly shots (I'm 40), thinking ooph might be the better option. But researching that at the moment.
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Mom of twins, you get the stick-to-it award. Good for you for advocating for yourself and giving that kitchen sink a hurl. If I were a breast cancer cell I wouldn't be cause dead in your bad-ass self. Now go forth and live.
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Well and wittily said sbelizabeth! x
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