Response to neoadjuvant chemo?
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sbelizabeth, I need two wisdom teeth pulled (I only have two)...they aren't impacted, so he said it shouldn't be too difficult. I've never had a tooth pulled, so I'm scared. 😳
I'm choosing to do it under local anesthesia with nitrous oxide (never had that either). I'd prefer to stay awake instead of going under. I need to get some crowns too....he made it seem like he wanted to do it before I started Prolia but I'm going to ask about that
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Hi Everyone- I posted a question a while back, and was trying to catch up- I appreciate the responses! I had my 4th of 6 chemo treatments about a week and 1/2 ago...knocked me on my booty this round- faster and harder, but side effects subsided last week and I'm just dealing with the annoying ones. Hoping 5th and 6th aren't even worse.
Meg- I'm planning a BMX with expanders....so I'm reading everyone's posts, and trying to stay up on the nodes etc! There's just so much to learn and know. I appreciate all of the info here! Thanks everyone - and Yay for Fatty Livers!
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i am scheduled to get proliacas well on my next onc visit. My bone density test showed isteoporosis. My dentist has two patients who have necrosis of the jaw, so he is not a fan. Neither patient had an extraction either. I don't know what to do. I had an allergy to taxol and got pnuemonitis so have a bad history with side effects.
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Hi Kay, I know what you mean. It seems like if there's a rare side effect or a rare chance of something happening, that I'm the lucky one who gets it.
My dentist said that Prolia is much better than Zometa as far as risk of side effects.
I have osteopenia in lumbar spine so they think I should take it. It also has shown to reduce the risk of bone mets so I like that part.
. It's frustrating though that's we use a medication to treat one thing and then need another medication to treat the side effects of the first. 0 -
Hi all,
I was just today hearing about prolia vs zometa and will talk with MO about it. She was talking zometa but --was there a recent study showing prolia was better? And I need dental work as well. They said I needed a root canal plus a crown of course, maybe two years ago but it hasn't been bothering me. I did a bad thing, lost my crown and delayed going to the dentist. I did not know that teeth will grow until they hit something (ie the upper tooth above it) so it was "supererupted" and couldn't take a crown. Who knew? Yeah. I need an appointment. But only halfway through rads and I am full up with appointments if you know what I mean.
Meanwhile my skin is red and bumpy and itchy and hurts. So over this! Over with this election too!! Voted early and can't wait for it to end.
Hoping you all are coping well.
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Hi reflect! Yes, talk to your MO. Mine much prefers Prolia, so definitely warrants a discussion. My dentist agreed, too. This whole thing just feels like one thing after another--like it's never ending!!! I'm scrambling to get wisdom teeth pulled and a bunch of crowns; while at the same time enroll in the PALLAS trial. Wondering if I get into the experimental arm (Palbo) how it will be to try to get dental work done if white counts are down. Feels like a juggling act. Just want my old life back!!!
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Mom_of_twins, i just had a molar extracted last Friday, eight days post final chemo (with MO's blessing). I went in to the implant specialist for a consultation about it, he said it was going to be easy and did i want to just go ahead and do the extraction right then. I said "yes, please!". I took half an Ativan, we moved to another room and he got to work. It was no problem at all. Done in about twenty minutes. No sedation just freezing.
I did have some bleeding start the next day, likely due to low platelet counts, but i'm right as rain now.
About response to neoadjuvant chemo: today i met with my surgeon and found out my tumour has shrunk from 16mm down to 7mm. No nodal involvement according to the MRI, consistent with mypre-chemo MRI. I am very happy.
I was worried about progression (25% of cases it seems). Although i would have liked to have a "complete response" to chemo, those are fairly rare (maybe 15-20% of triple-positives). I am happy chemo was worthwhile.
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Tunegrrl, thanks for sharing your experience with your molar extraction. I'm scheduled for next Wednesday...eek!!
And wonderful about your tumor shrinking! That's great news. A PCR is rare for ER+, and so great that you appear to be node negative!!
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Thanks, Mom_of_twins
Good luck next Wednesday! It'll feel great to have that done with.
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Great news Tungrrl!!!!!
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Hello all, I been struggling with reading posts to decide if I should get radiation. After talking to two OC and two RO I decided I needed to do Rads. The thing is I need to choose now is using my RO from Kelsey Seybold or the second RO from MD Anderson. The Kelsey RO said he do a CT scan to see if my heart is in radiation field. If not no breath holding techniques is used, only case by case. The RO from MD Anderson said she have me wear a goggle and it let me see how far down my heart is away from rads when I hold my breath. When I mentioned that the first RO said that can create error. They both seemed to be credible and qualified but my priority is to avoid rads affecting my heart at all cost, given bc was in my left breast. RO also said it will hit the lung 20%. So had anyone have rads on left breast? How did you decide on the breath hold technique? Do you have SE from the lung? Thanks everyone.
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Hi Houston, I had rads on the left breast and did IMRT/RapidArc with deep breath hold. I have a cardiac history (complications with my second pregnancy) and it was very important to spare my heart as much as possible. I was told the deep breath hold is an effective way to spare the heart. They have to simulate the breath hold through mapping to ensure that your heart pulls out of the radiation field.
Without a deep breath, the CT showed that a portion of my heart would be in the field, and it pulled completely out of field with a deep breath. So was an easy decision for me. Each session takes a bit longer, but worth it.
I've had no lung issues, but I was told that a small part of the lung does get exposed, which can cause fibrosis (scarring). I don't have side effects related to that and hopefully I won't!
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Thanks Momoftwins for sharing. That's good you got thru rads OK. I'm just starting. My OC said today Kelsey Seybold has an up-to date state of the art machine that can let Dr. See if your heart is in the radiation field, if it's not then they don't apply the breath hold technique.. she said its good for the left breast. Has anyone heard of this machine before?
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Houston2016 I didn't do the breath hold technique either, which I still find unsettling, although I don't seem to have any lung or cardiac problems. I asked about it at least a half dozen times, and they even showed the images of the radiation field avoiding the heart altogether. I was reassured each time I asked. It has been almost three months since I completed rads - the SEs I'm finding now are stiffness in my shoulder and pectoral muscles (I'm pretty active too.) I had ALDS, but I'm convinced it was rads that has affected me to this point, and makes me wonder about the long-term impact on my heart. My machine was called TrueBeam something...
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Happy to have found this topic...
Last Friday I had a LMX after completing neoadjuvant chemotherapy. At various points during treatment, I had a PET scan and 4 breast MRIs. The doctors never believed my nodes were involved. After my first 12 infusions the breast tumor was no longer observed on MRI. It was quite a shock when I was told both sentinel nodes were positive. I am waiting on the pathology report (5 to 10 business days) and oncologist appointments. Will let you know result and recommended treatment plan.
SV
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Hello everyone, I went in person to speak to the RO from Kelsey Seybold. He showed me an old CT scan in April that shows my heart is small and not in the radiation field. He said for someone with an enlarged heart then deep breathing would be used. Case by case. Kelsey has a new machine call True Beam Edge that supposed to monitor your movements.
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SV6059- please keep us posted- I'm still in chemo- just had 5 of 6. I know that i'm not out of the woods for more chemo and/or radiation after I do a BMX. They say small chance, but I'm more realistic as your story gives light to. Wishing you the best and appreciate your willingness to share!
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Hi everyone, I just got a not so good news from my OC. As previously posted, I went to see RO from MD Anderson for a second opinion. This person looked at my PATH report from 10/5 Left UMX, and said my BS did not take any lymph nodes out, but the paper stated specimen from lymph node were removed in the summary it says total lymph nodes=0; none positive. The BS based on this told me the lymph nodes were negative because tissue were blasted by chemo.
Later this week, the same RO called my OC to let her know that I need to have surgery AGAIN to get more lymph nodes out. Apparently she didn't think my BS did the right job. This RO said standard practice is to get 10 lymph nodes out. I cannot believe this, I was already having hard time with the surgery on 10/5 and the reexcision on 10/24, it has been 8 weeks since first surgery. I was preparing for radiation. Now this? How can they play game with my life and want to open me up when they want? If in fact the BS did not do the lymph nodes why the OC not telling me? They are all covering for each other and I have to pay the price? What is the significance of removing 2 or 6 lymph nodes out. Isn't radiation supposed to kill those nodes? Does anyone have inputs suggestions?
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Oh Houston, I'm sorry. So your path from surgery didn't show any lymph nodes at all, or just none were positive?
I know the standard of care is to at least do a sentinel node biopsy, and often if any of those are positive, that is sometimes followed by axillary dissection. More recently, however, based on the Z11 study, they are leaning toward removing less nodes and like you said, let radiation take care of the rest.
I had a sentinel node biopsy a week before my double mastectomy, and 2 out of 3 nodes were positive. I was told I was going to have an axillary dissection during mastectomy, but they only found two more nodes (which were negative). I just didn't have a lot of nodes, but much oncologist did say that chemo can destroy them.
I guess my question is: did you actually have a sentinel node biopsy? It's all confusing and seems like you're getting conflicting info! I'm so sorry--that must be so frustrating! I do think they should have at least evaluated your sentinel nodes, and if they didn't, they should have! But then it almost sounds like they said they couldn't find any? Am I understanding this correctly?
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Oh Houston, how awful for you. Big hug to you. That stinks.
When they remove lymph nodes they don't actually know how many they will get. They remove by "levels", either level 1 or 1&2. Everyone has a different # of nodes. I had 17 in my level1-2 dissection.
Or, they do a sentinel node biopsy, put dye into the tumor (or previous location of it, I suppose), follow the dye and remove the first 1-3 nodes. These can be sent to pathology right away, and if it's necessary they can remove more.
Anyway, that's my layperson's understanding. It seems to be standard to do at least the sentinel node biopsy with most of us. You can ask your BS what his/her rationale was for not doing it, but personally I would get it done now.
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Hi Momoftwins, and Reflect, I'm sorry for not making sense and yes it's pretty confusing why these doctors want me to do this back and forth.
Here is my entire story: Dx in April with er+pr+, 2b, my team of drs are from Kelsey Seybold, the OC, Dr.R, BS, Dr.B, and the RO, Dr. D. I finished AC and Taxol April-September 01. Prior to chemo, I had an axillary biopsy, biopsy of the large mass, 3.3 cm, and some calcification which were DCIS, and a lymph node biopsied at superclavical. Result is one positive axillary lymph node, and tumor mass, and calcification. So after chemo, I went for LB MX on 10/5, (Dr. B performed a simple MX, had the dye went in, removed 2 sentinel lymph nodes) the PATH report came back two weeks later, I met with Dr. B. To discuss: he said the lymph nodes came back negative, he said that's good news because that's very important. OK, he said the chest tissue however, showed a tiny dot of cancer cell up on the edge so it's positive margin. On a side note, my Dx was tumor 6" above the nipple. I also have LB ultrasound done on 6/13 and 08/23/16. No other biopsies done. So I consent to do second surgery to get a clear margin which took place 10/24. I met with Dr. B on 11/2 to discuss PATH, this time no sign of cancer cell. He did cut out more skin, and my PS, Dr.Bl puts in a tissue expander, both times. So everything was good and I consulted with Dr.D for rads but I also went to see Dr. A, RO from MD Anderson, on 11/11 for second opinion, and maybe to do rads there. I sent records there for review.
Dr. A reviewed my PATH from 10/5 without the Dr. B operative report. She told me it looked like Dr. B didn't take any nodes out. I told her that's not possible, I read the report and it stated Dr.B submitted 3 specimens, left breast mastectomy, left axillary sentinel lymph node, and left breast mastectomy skin. At the end of the report, it says lymph node, sentinel, left axillary, excision: fibrovascular tissue with no lymph node identified. The lymph node summary said:
Total number of sentinel lymph nodes:0 total number of positive sentinel lymph nodes:0 total number of non-sentinel lymph nodes:0
So I don't really know why it stated zero and the Dr. Report described his removing small lymph nodes within the axilla. Anyway, Dr.A from MD Anderson may have different views and she called my OC,from Kelsey to request for another surgery. So here I am don't know who's right and who's not. I want to ask Dr. A what's the benefits of getting more lymph nodes if I'm going to do radiation? Is someone look at this at a different angle? After having hard time recovery, I just don't want to subject myself to unnecessary surgery, for what purpose? Do you think another biopsy is needed at this point? Thanks for all your inputs and concerns.
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Hi Houston!! Thanks for sharing your story. And yes, it is quite confusing. My first thought is that you don't definitively know the pathology of your lymph nodes. At the very least, you need a sentinel node biopsy, but sounds like we're not sure how many nodes were removed? Would you consider sending all of your pathology slides elsewhere for an outside review?
I think you have to know that information accurately in order to make decisions. If you truly had a negative sentinel node biopsy, then I think radiation would be fine. But obviously you must feel unsettled to get conflicting and confusing information. I'm so sorry!! I had Mayo review my pathology just for peace of mind. Not sure if any of this helps!!
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Also, I know a few of us have discussed this, but have any of you enrolled in the PALLAS trial yet?
Opt4Life, I remember you saying you were randomized to the control arm. What has the trial entailed so far? How often do you have to go in and what do they check?
I'm supposed to enroll in the next week or two. It makes me nervous. I wish I could just definitively get something more to reduce my risk of recurrence. I wish one of the MO's I consulted with would've prescribed Xeloda (Create-X). A two year clinical trial, although a potentially great opportunity, is daunting. I just feel like it's going to be hard to move on mentally if I'm on a drug that lowers blood counts, etc., for two years. It was hard enough trying to avoid germs with my young kids for the 4 months I was on chemo! And even being in the control arm is a big commitment. I obviously want to help science and the future so new treatments can be discovered, but it's a lot!
I'm going to enroll, but admittedly I have a pit in my stomach. Just want to go back in time to my pre-cancer life. Sigh...
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Houston, I think I had a similar circumstance to you. If so, you're the first person I have found with the same circumstance. I had a right mx and ALND after chemo. I had a very good response to chemo, but not a total response. Had at least three different tumors and also "numerous" lymph nodes per the breast mri. The BS told me I didn't have any cancer in the nodes under my arm, it was all gone. I read the pathology report and there weren't any lymph nodes in the tissue. She didn't tell me that! And I really felt like she was hiding it from me. I do love her, I really believe she is a great surgeon, and very much does the absolute best she can for every patient. I am not sure why she didn't tell me about the lymph nodes. I called and asked her about it. She said that chemo sometimes destroys the lymph nodes. Probably especially if there is cancer in them that it goes after. I assume all my lymph nodes had cancer and that is why they were all destroyed. I have gotten comfortable with the idea, but it has been 5 years for me. Do be careful about lymphedema risks. I did develop a bad case almost immediately after surgery and still struggle with it. That is my very unscientific feel about it. I could be 100% wrong.
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Mom_of_twins I haven't enrolled yet in PALLAS, I just completed radiation this past Tues (Yaaaay) and am seeing my Oncologist to discuss it further first week in Jan. I'm with you, it's a tough one. But I feel like my chance of recurrence is so high, I am pretty much willing to try whatever could help. But I travel a long distance to appointments and want to make sure I can take on the travel commitments with a trial. We talked about scheduling the Ooph and I am going in for a consult on that in Jan. I also still have to finish Herceptin until March and from our last conversation it wasn't clear whether Pallas and Herceptin could overlap. I will have more questions when I see my MO next for sure.
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Hi Meg!! Congrats on being done with rads! That's so nice to have that behind you!!
I signed consent for PALLAS today. Of course they tell you all the potential risks and side effects and it's scary!! Obviously, every medication has risks (think of all the commercials that list all of the side effects),and hopefully Palbo's benefits will outweigh the risks. Anyway, what's worried me most is what are the shorter and longer term repercussions of suppressing the immune system for two years? I still have fairly low platelets and lymphocytes and I'm 6 months out from chemo.
Just wondering how much suppressing immune system for 2 years will affect body long-term? And one of the side effects is hair loss, and although not on top of my list of priorities, that is a bummer considering my hair is growing back. So I'm kind of scared to get it, and scared not to get it at the same time! Of course I want to do everything I can to keep this cancer away.
I was also told that the annual San Antonio Breast Cancer Symposium is next week, and they are supposed to reveal some data regarding the Create-X study, regarding taking Xeloda when there's significant residual disease after chemo.
I wonder if the data shows that it's beneficial for both triple negative and ER+ subtypes, would our MO's finally be willing to give it a try? Part of me just wants to get more treatment...go through that 6 months or a year of a chemo pill, and be done with it. Especially if it's been proven that it reduces risk in our subtype. I just wish we all had "cleaner" cancer and could just move on with our lives!!
I created a post asking if anyone is on Xeloda or doing PALLAS trial; hoping to get some input there, too.
Hope all is well! It's been quiet around here...would love to hear how everyone's doing!
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Hi Meg and Mom, I just finished rads yesterday. I have an appointment at the end of Dec with MO at Dana Farber to discuss PALLAS and enroll--unless I chicken out. Also worried about Palbo SEs and some part of me is thinking I should "save" palbo in case I need it later. Local MO says why not do it. I don't know, but I am tired of "treatment". Thoughts?
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Hi reflect! I'm totally on the same page as you. But the way I think of it: I want to do anything I can to never need it later!! That's why I feel this time and the decisions are so critical. But when I was at the meeting to sign the consent, I was getting cold feet. I felt scared about thinking I'd land in the experimental arm, and then felt anticipatory disappointment when I thought about being in control arm. Feels like a double-edged sword.
I guess, in a way, enrolling in a trial like this can stunt us mentally. I mean, most people are walking away from active treatment...and over the past couple months, I've tried to get back to life and mentally move forward. Being in a trial and dealing with low blood counts and being worried about getting sick (for possibly two years!!?) will be tough mentally. I want so desperately to move away from cancer.
WIth that being said, it does seem promising and is potentially a great opportunity. But it's scary to take a drug for so long without knowing the residual long term effects. I know it's routinely used in the metastatic setting, but that's a whole different scenario.
I'm eager to hear more information about the Create-X/Xeloda study next week. And I'm unsettled about PALLAS...
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It's been so quiet around here!! How is everyone??
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I've sort of jumped out of posting here- haven't thought or discussed any trials, still trying to finish up chemo (got delayed 1 week due to low platelets)- heading for a 2nd try this am for #6 of 6, fingers crossed- want it done as you all understand! Then I'll have surgery. Trying to stay educated on everything but it's not simple this journey, is it?!!!
Hope everyone is well.....
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