Response to neoadjuvant chemo?
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Hi Kelly! Thanks for checking in! I hope your platelets went up and you were able to finish up chemo! If so, how'd it go?? And you're right; there's nothing simple about this journey! Keep up posted. I will find out soon which arm I'll land in for the PALLAS trial. Have to go in next week for blood work and screening. Makes me anxious and just want to be done with all of this stuff!!
How's everyone else?? I'm hoping it's been quiet because everyone's been living life and getting ready for the holidays. Would love to hear from all of you, though...think and pray for everyone all the time! Please let us know how you're doing!
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Hi Mom, I'm going next Friday to Dana Farber to enroll in PALLAS also, blood work etc. I am nervous but I figure if I get the palbo and have bad SEs I could stop, right? I just want to feel good again, and not be consumed with cancer thoughts.
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Wow, reflect. We are on the exact same timeline. I feel the same way. I feel like we are entering this new unknown of a clinical trial, where we'll possibly be on this treatment for two years!! And dealing with low blood counts, etc. The flip side is we'll be getting nothing more and that makes me feel insecure!! I'm with you. I just want to be done and to move forward. I do agree that the good thing is we can stop at any time
Do you know when you're being randomized??
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Hi Mom, I don't actually know if I'll find out on Friday or not. You're not at Dana Farber are you? We could meet for lunch
. Despite feeling nervous, I want to do it for all of us. Even if I don't get the palbo, we will know if it's helpful for lower stages, and help get it approved if it is. Good luck to us! 0 -
Hi Momoftwins- thanks for asking- platelets came up, they cut back the carbo a bit and I was good to go. This weekend is much better for me after chemo- last two knocked me on my rear lol. I'll be curious how your process goes with this study- I haven't looked into much beyond the regular treatment after I get surgery.
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Hi ladies, hope you are all having a great holiday season. I love the season--the music, the treats, and yes even shopping for gifts. However, this time last year, I was only amonth into chemo and certainly not feeling theholiday spirit. What a difference a year makes.
Mom_of_twins, the PALLAS trial is going okay so far. I was being seen every 30 days for bloodwork, to review any new issues or concerns, and turn in my tracking sheet to confirm I'm taking my aromasin daily. They are now switching me from 30 day check-ups to 60-day check-ups which is fine by me.
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Hi reflect, yes you're right! Regardless of what happens, we will be participating in an important study that might help people in the future. No, I'm not at Dana Farber, or else I'd love to meet for lunch! Good luck on Friday! I go in on Thursday for screening exam and blood work. I think I get randomized late December/early January.
Kelly, so glad your platelets came up and you're feeling better this time! Pretty soon chemo will be behind you. Hang in there.
Opt4Life, yes this Christmas will be much better for you! I was diagnosed right after the new year...hard to believe it's almost been a year. Feels eternal in some ways and so quick in others. Kinda like the pause button was hit after last New Years and just hit play again. But it's the same time of year so feels strange. I was told the first couple months of the trial requires the most visits and then it settles down. Apprehensive about the whole thing
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Just had Taxol #5 and I can feel that the lump is 1/3 smaller. I am doing weekly Taxol followed by DD A/C. I also had lupron shot for ovrian suppression.
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Hi Ladies- I decided to try and go back through some of this thread, I know momoftwins your initial posting was about chemo prior to surgery and results. So I thought I'd "help" with that piece lol.
Like mom- routine screening (was pushed out a bit because my mom passed away- go figure) on an MRI found "aggressive" masses. ER-, PR was 15%, HER2-. KI67-90% (yikes!)- right into chemo. After 3 rounds, ultrasound was done- the main bad boy stayed the same- other 3 "shrunk". I have never been given any indication that it would all go away- but they liked what they were seeing. MO kept Adriamycin "in her back pocket", my assumption if things weren't responding. She has always let me know there's a slight chance of more chemo after surgery- so the dreaded wait for what the see during that time.
So I will keep this thread updated once surgery and path happen and come back as it seems helpful? No date yet- but shooting for January.
Background- mom had BC twice (and colon cancer- my dad had prostate), tested negative for BRCA 1 and 2. Her cousin had BC (but both ladies were "older- 60's and 70's"), and that cousin's daughter (at the age of 47). All have tested negative for BRCA. I did the genetic testing and negative as well, but I have a variance on the PALB2, which once they have more info they will let me know. I'm also watched closely for colon cancer as I like to grow polyps lol. So I can relate to those of you searching and testing, and also I'm a mother of a 13 year old daughter- and it's so frustrating to see so many of us with young families just wanting to watch our kids enjoy life!
But we will move on!! Have a great holiday week everyone!
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Hello ladies, I know this thread is not about radiation but that's where I'm at. Also, I'm taking Amiridex, which is worse SE, joint hands pain, my whole body feels like 65-70 yrs old. Is this how it supposed to feel in the next ten yrs. I'm hoping to take tons of herbal products to help with the inflammation once I'm done with rads.
I have four rads so far, have not go over CT plan with RO yet. But today the tech is telling me they plan to radiate the middle part of my chest between the two breasts, bc there are lymph nodes there. I never heard of that and I don't want to risk it so close to the heart. Has anyone done this as part of your radiation treatment?
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Hi, Houston. The intramammary lymph nodes are in the middle of the chest, between the breasts. Sometimes these lymph nodes can be affected by breast cancer, particularly if the tumor is on the inside aspect of the breast. Radiation to these nodes is pretty common--my rads plan included them. Your RO will engineer a program to radiate the at-risk tissue with the least exposure of the heart and lungs.
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Kelly, thanks for the update and will be praying for a great pathology report for you!! Please check back in to let us know, and we are here for you along the way!
Houston, my radiation treatments also included the intramammary nodes; as sbelizabeth said, that's very common. Radiation has become so precise, that they have gotten really good at sparing the organs as much as possible. I was amazed at all of the thought and planning that went into my radiation treatments (RO, physicists, etc.). They literally care about millimeters and do all they can to spare heart and lungs. Even my cardiologist told me that he doesn't see radiation damage to the heart much anymore, and said how much it has improved over time. You can ask to see your "mapping," which will show you exactly what is receiving the radiation and my guess is your heart won't be in the field at all. That might bring you some comfort--it did for me! Hang in there--it will be over soon!
How's everyone else doing? Meg2016, we haven't heard from you in awhile! Would love to hear how you're doing!
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reflect, how did your appointment go? Did you find out if you'll begetting Palbo or not? I find out on 1/3. Hope all is well.
Happy Holidays everyone!!
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Hi mom, I cancelled because it was 12/23 and I was overwhelmed with work and Christmas. I plan to reschedule for January. Crossing my fingers for you!
Happy Holidays everyone!
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Just stopping in to say hello while I've got a big smile on my face. I stopped through my pharmacy because my MO called in a prescription for a year's worth of aromasin. When I pulled out my wallet, the pharmacist goes 'don't bother, Merry Christmas'. Apparently I've met my catastrophic limit againthis year.
God bless and Happy Holidays everyone!
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Hello! Hoping everyone had a wonderful holiday! I've been dark on the boards for a couple of weeks because we've been on our New Zealand trip! While I've been a little more tired than normal with this trip following so closely on the heels of radiation, its been so great to just be on vacation and spend time with my family. This is the most "normal" I've felt in quite awhile! Travel is what we do together and this past year with no travel has been long. Its just what I needed! By the way, New Zealand is beautiful and the people are amazing, if you ever get the chance, I totally recommend a trip here!
I go back to Dana Farber Jan 3 to meet with my MO and discuss PALLAS as well as meet a new Dr on a consult to hopefully go ahead and schedule my Ooph. I am ready to get that done, my PS said I can't do it with my implant exchange surgery so instead I will try to schedule it around the timing of my final Herceptin (March, I hope). It seems like forever since I have seen my MO, hard to adjust to every six weeks schedule. Any of the other Dana Farberites- let me know when you are there in 2017, I am there for Herceptin and Lupron and any number of appointments, would love to meet up!
I don't know about all of you, but I am totally ready to say buh-bye to 2016!!
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Hi Meg!! How wonderful to have gone to New Zealand!! I've always wanted to go there, friends who have gone said it is the most beautiful place. Maybe someday!
Good luck tomorrow with appointments! I also go tomorrow to begin the PALLAS trial and will find out what arm I landed in. We will see.
I hope everyone had a great holiday! It's hard to believe it's 2017--and yes, good riddance 2016!!!
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I did get the zometa last week. Did feel like I had the flu the day after. Hope I made the right decision taking it.
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Hi everyone, just went for the first day of PALLAS trial and found out that I'm randomized to the control arm. So no Palbociclib for me. Although I was very apprehensive about starting a new drug, I was eager to feel like I'm doing something more to fend of distant recurrence. Asked about Xeloda again, and my MO doesn't think that is the best answer. She is skeptical of the Create-X study, since no more information has come out about it since December 2015 and thinks it could do more harm than good.
Ugh....I just hate cancer.
Hope everyone is having a good start to the new year! Would love to hear how everyone else is doing!!
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Hi Everyone-
I feel like I'm totally uneducated on the studies you all are involved in! I've been too wrapped up in my own process lol. About 2 weeks after my last chemo infusion (via vein), my arm became painful, swollen and red. Did see MO who squeezed me in, she put me on antibiotics but wasn't sure what was going on. Said if not getting better to get into Urgent Care (of course it was the holiday weekend approaching). Last Friday night got worse and I got myself to ER. Ultrasound and blood work done and ER dr said Deep Vein Thombrosis and checked me into the hospital. The next day after further review of ultrasound the Dr said it's a blood clot in a superficial vein and cellulitus. I was able to home Saturday, but I've been on constant pain meds and it's just totally frustrating. So hoping my surgery stays on schedule.
Wishing you all a wayyyy better 2017!!
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Oh Kelly, that stinks! I'm glad you went in, and hopeful that you have a speedy recovery! Not the best way to start 2017, but hoping things turn around for you.
Meg, how did your appointment go today?
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Happy New Year everyone (or as I like to say, Happy New Deductible!)
Had my MO appt and no PALLAS for me. Because of my Her2 positive status, which the study online said they don't eliminate based on Her2, but when my oncologist followed up they indicated they aren't taking Her2. I also mentioned Xeloda and got the same answer- results aren't there where she would recommend it. I am going ahead with the oopherectomy- working on scheduling it today.
ajbclan- sorry to hear about your DVT! Hoping that this doesn't cause any delays for you.
Opt4Life- A year's supply of Aromasin- hilarious xmas present!
Mom_of_twins- did you ever meet with an integrative oncologist?
How are everyone's side effects from Aromatase inhibitors? I know that joint pain is going to be a part of my new normal, trying to come up with the best ways to manage it. I got a treadmill for Christmas- whoohoo! Since I have a job that involves sitting and working from home, getting up and walking a few times a day seems to help, but I won't always bundle and get outside to do that so that makes it easier.
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I've been on letrozole since July 2012, and my MO intends to keep me on it "forever," which is a-ok with me. At first, I noticed stiffness and achiness mostly in my hands, but some in my hips and knees as well. As the months and years ticked off, however, my hands seem fine. And I'm the proud new owner of 7-week-old twin titanium-and-plastic knees, so that pain is gone too! I have tolerated AI therapy well, and I believe it's because I've tried to MOVE a lot.
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Meg, sorry about the PALLAS study, but I'm enrolled and we're still in the same boat!! It's reassuring that your MO at Dana Farber concurred with my oncologists. We are both being treated at top-notch facilities, so I suppose we should rely and trust their experience/knowledge? But as we've all discussed before, we all want to do more (e.g. Xeloda). I'm just struggling finding peace with no more treatment aside from the AI.
I've been tolerating the AI fairly well. Have had a couple irritable days (which is unusual for me)...has that been happening to any of you? Some joint pain, but it's so hard to tell if this is new or something I've had since pre-cancer. Paying so much more attention to my body and every ache and pain now.
No I haven't met with integrative oncologist yet, but it's on my list. Have you looked into it at all? Since I'm not getting the Palbo, I'd like to build up my immune system as quickly as possible. Meg, I'm going to try to get back into my exercise routine again soon. I know a healthy diet and exercise has proven to reduce recurrence--so one of the very few things we have control over.
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Happy New Year ladies, I hope you all had a great holiday. I did little, thought about little, and ate lots.
Mom and Meg, I see you are joining me on the No Palbo ride. I was disheartened to not receive further treatment but it also means I'm not receiving further treatment.
I'm on the daily aromasin, 60-day check-up, and 6 month mammo plan. Aromasin has me flashing once daily and knees take a beating when walking down or upstairs. Coincidentally they don't hurt when exercising--weird.
I have a breat reduction and lift scheduled for my non-cancer breast in February. Not really feeling up to going back under the knife or anesthesia but I'm currently lopsided and its noticeable.
Hope to see my 50th b'day in2017!
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Happy New Year, Opt4Life!! Glad to hear from you. I ate tons over the holiday; trying to get back on track.
Yep, still bummed about no Palbo. Opt4Life, I can't remember so forgive me if you already told us, but did you and your MO ever discuss additional chemo like Xeloda? It seems like no MOs approve it, but I have heard of some patients getting it. Would love to know who their doctors are!!
My knees hurt going up and down stairs, too. Truly I don't know if it's from the Arimidex or just from being in my 40s. I didn't pay attention to every ache and pain before cancer, so now I notice everythjng. Just not sure if they've been around and just didn't pay much attention.
Good luck on upcoming surgery! Totally understand not looking forward to another surgery, but will be so nice to get it behind you. The one good thing about no Palbo is that in a way, it feels like I'm moving away from this cancer thing (although still enrolled in the trial). I was worried about how hard it would be to deal with the side effects that came along with it, along with the low blood counts and constant fear of getting an infection. I have 4 little girls and the 4 months I went through chemo when immunocompromised was rough. Two years would've been hard, although I would've happily done it to keep the beast away!! But definitely a double-edged sword. Just hopeful our antihormonals are enough
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I was directed to this thread since I am concerned so I am copying below.
Hi again ladys,
I read somewhere on here that if you do not have a complete respons as tripple positive the prognosis looks worse for recurrences.
So there was no Complete response for me...my tumor was 2,5 cm x 2 cm at removal, instead of the 6,5 cm x 4,5 cm so it has shrunk some but I am still concerned about this.
I will start the radiation and have started Femara. My Ki65 went down from 35% to 6% so I guess that is good. Not sure what it means. My onc is on holiday so I still have to wait for the entire picture and explanation. If anyone here has some advice I would be so happy.
Is it true that the prognosis looks worse and why?
I did not have any scans done for mets as of now but my Onc told me they would do it if it would make me feel better, I am not sure it would, sort of holding on the Stage 2B for the moment and would like to stay there, but did anyone here do scans with clear nodes?
The nightmare continues....
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Hi Kattis! Glad you reached out to us. We all know how disappointing it is to not have a pathological complete response (PCR) from chemo. The reason it increases your risk of recurrence, is that there is data that shows those who have a PCR have an excellent prognosis. The theory is that if chemo kills all of the known cancer in breast tumor and/or nodes, it is extremely likely that it killed any rogue cells that may have left the breast. Without a PCR, there's more of a concern that there might be some lingering stray cells floating around.
With that being said, being node-negative is huge, and bodes well for a good prognosis. Although it's possible floating cells could have escaped, that's less likely since you were node-negative. Most of us on this thread had positive nodes after chemo, which seems to be a much less favorable prognosis than if chemo cleaned them out. I've also read that the significance of PCRs are less significant for certain subtypes, such as triple positive. It's also very favorable that you were so strongly ER/PR+ because anti-hormonals should be very effective for you.
As far as scans, that's a personal choice. It's terrifying going through them, but what a relief it would be when you heard they were all clear (which is pretty likely)? I thought scans were the worst part of the process, but I always reminded myself that not having them doesn't make the potential cancer go away. But total personal decision, and I totally get each perspective.
I'm so sorry you received this disappointing news...and we all have been where you are. Personally, I think you have a great prognosis and it's great your tumor reduced over 50% in size! We all have to remember that only a small percentage get PCRs!!
Edited to add: I was told on here that it's a good prognostic factor if your residual tumor changed to a low ki-67--so you have that going for you, too!
Hang in there and please let us know how things are going for you.
How's everyone else doing?
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Don't underestimate the power of hormone drugs on hormone positive cancer.
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Yes, Meow! So true!!
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