Response to neoadjuvant chemo?
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Hi All-
Bloot clot/cellulutis in arm is getting better finally- I'm on blood thinners but still on track for surgery at the end of this month. I'm not even thinking I'll have a PCR, just hopeful the chemo has kept it from spreading. We shall see soon. Not looking forward to the waiting game again.
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Kattis, i second everything Mom_of_twins just posted. And i wish i had thought to tell you about the current best evidence that suggests a pCR makes no difference to the prognosis in triple-positive breast cancer. Really, you've got so much good luck on your side right now. Enjoy it!
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hi ladies, my situation is much more worse than I thought it would be. I have multifocal cancer, the bigger tumor was 6cm, er/pr +, I had 6 rounds of neoadjuvent chemo ACT My follow up with my onc was very promising as we noticed that the tumor shrunk and the underarm node reduced in size. I had my Bmx surgery a week ago.
My path report revealed that I still have 11 positive nodes, the tumors did shrunk and had a lot of necrosis, the biggest tumor went from 6 cm to 2 cm. My big shock was that it turned out to be triple negative. i was devastated by the TN news as I was hoping that the hormone therapy will help with the residual cancer but now what chance do I have? I will meet with my onc next week to discuss if I can have more chemo before the radiation.
Any advice would be very much appreciated.
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Hi Momy4ever,
What was your percentage of ER/PR during biopsy?
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Hi Stephilosphy my ER +25 PR +2. I know that itwas low but it made me feel more safe having hormone Therapy
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Momy4ever,
I'm so sorry you're going through this. First, see what the oncologist says. Where are you being treated? Second, I highly recommend a re-review of your pathology....maybe even by an outside NCI center (if you're not being treated at one). I had mine reviewed by Mayo just for peace of mind. Many other facilities offer it, including MD Anderson and Johns Hopkins.
Anyway, if you truly are triple negative, there are many clinical trials and currently many MOs are offering 6 months to a year of Xeloda for residual disease after chemo (it seems that most are more willing if you're triple negative). Google the Create-X study.
I know how scary this is. We all do. But try to hang onto hope and get the full picture of your situation and see what else might be available for you.
Hang in there and we are here for you.
Keep us posted.
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Thanks Mom for your reply, unfortunately I'm not living in USA, I'm a resident of Dubai and I'm treated there. I will discuss it with my MO if we can re review my pathology in another place.
I will see him on Wednesday to discuss with him about the xeloda or may be more IV chemo round.
I will keep you updated
I pray for all of us.
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Okay, Momy. Best wishes! Also forgot to ask, have you had genetic testing?
Kattis, I forgot to mention that they often use the "Residual Cancer Burden (RCB)" to assess prognosis/risk after neochemo. In order to calculate that, you'd need the measurement of the primary tumor bed, the percentage cellularity of residual tumor, the percentage of DCIS, and lymph node status (which yours is zero. Yeah!). There's a calculator online through MDAnderson where you can get your score using that info:
http://www3.mdanderson.org/app/medcalc/index.cfm?p...
The scores range from 0-III: 0 means no residual disease; I means minimal; II means moderate; and III is "chemo-resistent." If interested, I can forward you a medical study which will tell you your risk level based on your RCB score. You might have had a much better response than you realize! And FYI--prognostically RCB I patients do as well as those with PCRs!!
Hope this helps.
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not yet done the genetic tests, we already applied but still waiting for the insurance approval. I already choose to have a BMX so I was not in a hurry but now afterfinding that I'm Triple negative I will push for it.
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Good idea. There are studies that if you are BRCA+ that it is more sensitive to the "platinum" chemos (e.g. Carboplatin), so might be a good thing to discuss with your MO for possible additional adjuvant treatment. Hang in there!! You're doing all the right things!
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Hi Katy, I have same concern as you when my tumor didn't shrunk as much after neo-chemo. So based on what you're saying, that there are stray cancer cells escaped from the tumor? I was told by Dr that it doesn't mean spreading. The tumor doesn't always shrink 100%. After surgery, what's important is that you have clear margin. The PATH showed I have LVI but BS took out 2 SNL and they were blasted by chemo, no tissue left. They consider it no lymph nodes.
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It's been awhile, so just checking in. How is everyone doing?
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Houston2016 - rather late to reply to your earlier post but rads is exactly what can clean up stray cells and please DO have rads to the internal mammary nodes between the breasts. Ladies for our own self-advocacy they are called this not 'intramammary' nodes, which are within the breast itself. Disease was found in my internal mammary nodes after rads that did not include this area and much research has led me to feel very strongly ALL stage 3 women should be considered for rads to this area as the chance of having involved nodes is up to 40%. Modern radiotherapy at a sophisticated centre will NOT damage your heart.
Mom of twins - I know you angst about no more treatment but my friend who had multiple mets in her spine became NED and stable for 3 years and counting on tamoxifen alone. Woohoo for anti hirmonals!!!!
Momy4ever - gentle hugs, you are having a hard time. It is possible your inc may still think anti hirmonals are relevant for you - and I agree, push for more treatment or other opinions.
Finally the whole issue of response to NAC is so complex. Having a 'poor' prognosis relative to those with PCR is very relative. They may have a 95% chance of cure - but some will relapse. And look at this from this end - if you gave chemo to what my onc friend calls 'little old lady cancer' - which is 100% ER/PR, no involved nodes, Grade 1 - it woulld NOT get to a PCR. Yet the likelihood of relapse is very small.
As for the RCB index - I strongly suggest you don't go there. Momoftwins I don't think that link will be helpful to most here. Your post chemo stats were much more favourable than most of us who are still stage 3 post NAC chemo. I ran the RCB numbers a year ago and went to a dark place for a long time. For most on this thread those particular numbers will look grim. We know we had a lot of disease - we know we still had it after chemo - Nuff said. And the oncs told me the RCB concept is very undeveloped and studies way too limited I suggest RCB comes under the heading 'don't Google' - it offers nothing in relation to treatment options, just horrible statistics. My onc friend said she'd seen many women do just fine without the big response to chemo. I hold onto that. And we read the stories of survival with multiple nodes on this forum and see a much more positive picture.
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SSinUK, thanks so much for the great input and encouragement! And I agree with the positive way to view things. I think a lot of the stuff out there on the internet isn't helpful or accurate.
I posted the RCB info in hopes to encourage Kattis, as she had clear nodes and likely the chemo killed some of her breast tumor. Just to remind her that she might have had a better response than she thinks! I agree it might not help others here. Not my intention, and can certainly delete that post if it's unhelpful.
How is everyone else doing?
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My tumor is almost 100 er+/pr+, ki67 7.5% kind of slow-growing but it is grade 3. I have finished 11 rounds of Taxol so far, it has shunk a lot and and I can barely feel it now. I hope I will get a good result in the end （still have one more Taxol then will switch to A/C）.
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Hi Everyone-
I'm scheduled for BMX w/reconstruct (TE's) on Tuesday. Not looking forward to being laid up again, but mostly that wait for the pathology report to see what is really happening and how things responded to chemo. Let me know if anyone has any hints for the recovery of it! I've been looking on the sites, but throwing it out here as well. Thanks!
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Hi stephphilosophy, good luck on the rest of chemo! Glad you're almost done with Taxol and that you seem to be having a great response!! Hang in there and keep us posted!
Ajbclan, good luck with your surgery--will be thinking of you on Tuesday! Praying for a great pathology report for you! Please post back here when you feel up to it and let us know how you're doing.
Hope everyone is having a great weekend
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Doing well! Have an Ooph pre-consult next week.
ajbclan Will be thinking of you for your surgery! That's the same surgery I had (except I also had lymph node removal.) Do you know what you will have done to lymph nodes?
My top advice:
1) Once you go home, set an alarm to have someone give you pain meds at night on the schedule for when they will wear off for the first couple of nights. Have someone keep a chart of when you took things, lots of pills between pain meds, antibiotics, probiotics, stool softeners, etc etc. ina ddition to your drain outputs.
2) After a couple days when you want to try to pare down the pain meds, alternate the strong stuff wtih Tylenol (assuming its ok with whatever they give you). The Tylenol took the edge off when the pain meds wore off and allowed me to get further stretches between taking them and gradually wean onto just tylenol.
3) Keep up the stool softeners! Hydrate, hydrate, hydrate.
4) Don't leave the hospital until you feel 100% confident with (a) being able to get in and out of bed and and to bathroom, etc. (b) the exercises you need to do when you get home and how to do them (c) how to clean your drains and measure output and (c) have your pain under control.
5) Have a good way to sleep almost sitting up when you get home, i.e. in a recliner or on lots of pillows and a wedge in the bed. Have a pillow or other cushion for the seatbelt when riding in the car on the way home.
6) Get a good Netflix show to watch or similar and just rest. The pain meds may make you feel like you can do more than you should, so just take it easy!
I'm happy to answer any questions! Good luck!
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Thanks Ladies! Meg- thank you so much- that's what I needed a synopsis just like that!!! Really appreciate it! Oh- and yes- they're mapping me first for lymph nodes. I think she takes one or two and then goes from there???
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Meg, you have some great tips for surgery!! And I second having a wedge pillow in bed -- don't think I would have been able to sleep without it. I ordered mine on Amazon. Also, I agree to stay on top of the pain meds...the first couple days are the hardest, and for me at least, I felt after a week I turned the corner. At that point, I went to only to Tyenol. I remember being most surprised at the limited range of motion. Total alligator arms; I remember the first time trying to brush my teeth--quite a challenge!!
With all the being said, it's totally doable and it will get better each day. Good luck and we'll be here with you along the way!!
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SSinUK, thanks for the late post but that's exactly what's on my mind now, rads. First, I completed 6 weeks of rads on lymph nodes, chest wall, supraclavical, intra mammary lymph. It was doable except the end of fifth week, chest turned all red, and left armpit swelling and sored. Last week I had four scar boosts, and now my chest is all darken red like a piece of steak, the skin near my rib hurts and feel rashy even though some parts started peeling. My left armpit still swell but it peeled the most skin and less sore. I looked at my chest and just horrified at the aftermath of radiation done to me. I still have two boosts left but uncertain about return. I mean, what determines four is not effective as six. The RO only told me that it is just standard. I would like some inputs on this and what I can put on my skin to relieve the soreness. I used aloe Vera plants and Aquaphor cream four times a day but it still hurts like crazy. Thanks ladies.0
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- SSinUK, thanks for the late post but that's exactly what's on my mind now, rads. First, I completed 6 weeks of rads on lymph nodes, chest wall, supraclavical, intra mammary lymph. It was doable except the end of fifth week, chest turned all red, and left armpit swelling and sored. Last week I had four scar boosts, and now my chest is all darken red like a piece of steak, the skin near my rib hurts and feel rashy even though some parts started peeling. My left armpit still swell but it peeled the most skin and less sore. I looked at my chest and just horrified at the aftermath of radiation done to me. I still have two boosts left but uncertain about return. I mean, what determines four is not effective as six. The RO only told me that it is just standard. I would like some inputs on this and what I can put on my skin to relieve the soreness. I used aloe Vera plants and Aquaphor cream four times a day but it still hurts like crazy. Thanks ladies.
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Hey reflect, was just reading through some of these posts. Haven't heard from you in awhile. Just wondering how you are and if you enrolled in the PALLAS trial?
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mom of twins- thanks! i panicked and just ordered the wedge pillow lol! should be here tomorrow. Houston wow- i can't believe what your body has been through!! I wish I had advice! Hang in there....
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ajbclan, glad you ordered the wedge! So what I did is I used the wedge as a platform and loaded it with soft pillows, so you can find a comfortable upright position. I also put pillows under my arms, because without them it is quite uncomfortable! So you will feel like you're in a sea of pillows!!
I'm also a side sleeper, so it was hard to adjust to sleeping on my back. What I did was just turn my bottom a bit to one side and then use the pillows to prop up the other side of my back a little with my husband's help (hope that makes sense). And then I would rotate sides -- it was just too hard to be flat on my back the whole time.
Good luck and please let us know how it goes
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Ok great info- I'm a side sleeper too and the whole time I was on chemo, I kept thinking- how am I going to sleep on my back?!! thanks so much!
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abjclan, wish you all the best in your surgery ... and a speedy recovery
SSinUK, thanks for your sweet words. I already spoke with my MO for additional treatment and he will start me on Xeloda as soon as my wounds heel.
I had another surgery last week because of an open wound and a necrosis area in my left mastectomy, the PS removed the necrotic part and restitched the skin. They want my wounds to heel before starting me on xeloda and radiation. Also the PS wants to finish the filling of the expander before the start of radiation. Is that the usual procedure, finish the filling before the radiation? I was supposed to start radiation mid February but now i have to heel first and finish the filling I don't think it will be possible. We'll see.
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Hi momoftwins,
After a lot of thought and a discussion with my MO, I've decided not to do the trial. My main reason is that I need to not think about cancer all the time, and I'm not up for more struggles with SEs, I need to focus on getting back on track with family and work. It feels like the right decision to me. Thanks for thinking of me.
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reflect, thanks for your response. I totally understand your decision. I'm in the control arm and have to go to an appointment today. It certainly makes it more difficult to "move away" from cancer and I have many similar feelings as you. Please keep us posted on how you're doing!!
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Thanks Mom! I saw my MO on Friday. I have a lot of scar tissue from sx/rads and she will refer me to a "genius" PT who can help. It's a huge lump, like 1/3 of my breast (and that breast is still large b/c I started at XXL!) ...hurts a bit. I need to return to PT for lymphedema in my arm anyway...and get a sleeve I suppose. Other than that, and lingering fatigue, nothing is amiss. Although we don't check for tumor cells or do scans as some women here do. So just hope I don't get any symptoms! I don't think I'll have regrets about not doing the trial. I really want to string together some days w/o thinking about cancer most of the time. Thank you for doing the trial, all the participants are moving knowledge forward, and that's so important.
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