TRIPLE POSITIVE GROUP
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I'm doing neoadjuvant treatment now. The original plan was to shrink/eradicate the DCIS/IDC so my surgeon could do a lumpectomy. I've since decided on a BMX (personal choice) but, I'm still hopeful for a PCR and, if not there's Kadcyla.
As others have said the good thing about neoadjuvant treatment is you know how well you respond to chemo+H/P.
I do understand how you feel, chemo was my biggest fear, surgery (even BMX) didn't phase me but, Chemo was my nightmare. I can say that TCHP isn't as awful as I feared, granted I'm tolerating it well but, the images in my head of throwing up, being too weak to move and emaciated is a far ways off from my current reality.
And yes, Chemo during COVID-19 is very scary but, this is our new normal for the next 2-3 months and, it could come back in the Fall so we may be living with COVID for the next 12-14 months (before a vaccine).
As it is, my surgery should happen in June but, given everything going on I may have to wait a bit longer. I'm hoping that's not the case as this isn't really an elective surgery but, I'll have to wait until we get closer to June and see how my state is doing (our peak is expected in 2-3 weeks)
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I had surgery first (BMX) only because biopsies done could only find extensive DCIS, although they felt due to the size that there was going to be IDC lurking somewhere in there. They just couldn’t find it initially. After surgery they did find 3mm of IDC on one of three sentinel nodes only (I’m a strange case I guess- no IDC could be found within the 8cm of DCIS), discovered it was triple positive and now I am on a chemo regimen (TCHP). I’ve had clear scans so technically I’m NED and there will really be no way to tell if the chemo is working beyond no reoccurrence in the future. I wish it would have been found before surgery so I would be able to see if it responded to treatment (in hind sight). Best of luck to you. It seems like many others on here had a similar recommendation and path as you.
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Thank you - will you eventually have surgery? Have you already started the chemo? I see that you were just diagnosed a few weeks ago. How's it going?
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Thank you - this helps!
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Thank you - I'm guessing (I have not met with the MO yet) that they are recommending the chemo first because I have confirmed lymph node involvement. I appreciate your insight!
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wahoomama - I had chemo first and am glad I did so. I had a 1.5cm tumor with 8cm of specks around it. When I had surgery 9 weeks after my last chemo, the residual cancer in my breast tissue was 2mm! I had a BMX with reconstruction.
Since I had residual cancer in the breast tissue that was removed, I will get Kadcyla to do some clean up!
I worry for you all just starting chemo with this COVID mess but you doctors and chemo nurses will take good care of you
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Thank you!
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wahoomama87, I suggest you find the thread for "starting chemo April 2020. My group set up a private Facebook account and are still together 3 plus years later. Great support and we were able to post before and after hair pictures etc. Good luck. Not a good time to start chemo or have surgery but we will be here for you.
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wahoomama - generally the dividing line for surgery first is tumors under 2cm and node negative. Tumors over 2cm - or those with smaller tumors but are node positive - usually receive chemo and targeted therapy first. The evolution of neoadjuvent chemo came in 2013 when Perjeta was introduced for use in early stage patients with 2cm tumors, and/or node positives. This additional targeted therapy, added to a taxane chemo plus Herceptin, was only FDA approved for neoadjuvent use at that time. This represented a shift away from surgery first for those who fit the criteria. The advantage of doing chemo first, as other have stated, is to determine the efficacy of the drugs, and to help determine whether other drugs need to be added after surgery if complete eradication has not occurred. Keep in mind that neoadjuvent chemo is not for the sole purpose of eliminating the breast tumor, it is to determine how effective these drugs are on your specific tumor, because chemo and targeted therapies are given with the goal of eliminating a metastatic spread to bones, organs, lungs, and the brain - these are systemic medicines, as are the anti-hormonal drugs given after surgery. Surgery and radiation are localized treatments to the breast and axilla. During chemo many of us are given Neulasta or neupogen, which helps build up white cells which are inadvertently being compromised by the chemotherapeutic agents. These white cell boosters will provide some level of protection against opportunistic infection, and frankly, I would rather be in a chemo suite than an operating room in the center of a hospital right now. Wishing you the best and so sorry you have these additional worries - dealing with breast cancer is hard enough, right?
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Hi there whohoomama87,
I went the chemo, herceptin route before surgery and there was significant shrinkage of my tumor and Had very clean margins. So much so that the partial mastectomy they did took very little corrective surgery and surgeon just moved around and filled in to keep my shape using my own tissue.
You have to do what is best for you and weight all the input and go with what you believe will be your best outcome.
Glad to see you here. Be encouraged.
You will find faithful friends here.
AngelsGal57
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wahoomama - the best argument for chemo before surgery in my opinion is that if you have a good enough response to chemo, it can de-escalate your treatment. It didn't work for me, I did show response to chemo but still had residual cancer in my breast and in 3 lymph nodes so I ended up still having everything - bmx, alnd, rads, etc. I was really hoping to skip some of those, either alnd or rads, but alas it was not to be.
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Thank you - I did see that group and will join as soon as I confirm what I'm doing. I meet with the MO today and have an MRI on Wednesday and then we'll formulate an actual plan.
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Thank you so much for this comprehensive answer. This does make sense. I'm anxious to meet with the MO today to see what he says also. My friend who had the exact kind that I have, had surgery first, but she did not have an lymph node involvement. So I can see where that pre-surgery chemo makes sense there. I'll be asking all those questions today.
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Thanks - that's my concern also. Doing all that to my body and then having the surgery anyway. And I know I want the mastectomy, regardless. I don't want to be messing with this any further down the road, wondering if the breast cancer will come back in remaining tissue. I would love to see response in the lymph nodes, but I also feel like it would be discouraging to do the chemo and see no response.
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wahoomama - it is pretty unusual to see no response to neoadjuvent treatment - Herceptin, accompanied by a taxane chemo, is a game changer in treating Her2+ breast cancer. One thing to consider is having surgery first and then encountering complications that delay chemo/targeted therapy. This can happen even to healthy people. Complications increase with bi-lateral mastectomy versus unilateral, and increase again with immediate reconstruction (tissue expanders), minimally 20% or more. I am one of those who had surgery first - I was treated long enough ago that neoadjuvent treatment was not the standard of care. I did have post-surgical complications - that nobody saw coming, and surprise positive nodes - also that were undetected by palpation or any imaging, including MRI. This caused four additional surgeries before I could begin systemic treatment and resulted in a 14 week delay, which was scary with a 2.6cm tumor and two positive nodes. Studies have shown that time from surgery to chemo and impact on disease free survival is most beneficial at 30 days, worse at 60, worse again at 90. The goal of systemic therapy is to control the metastatic threat, and studies have found that in tumors 2cm or larger, or node positive patients, there is more benefit from neoadjuvent therapy than adjuvent. Also important to note that due to the current state of affairs some hospitals are only doing bi--lateral mastectomy with no reconstruction, or only unliateral mastectomy, and will do the prophy breast and tissue expander placement down the line. Due to wanting to limit in-office appointments, some plastic surgeons are not doing fills or exchange surgery in the foreseeable future so are not placing expanders. If you are considering surgery first, you might want to check on this so that you are not left with fewer/different options than you might be thinking.
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SpecialK - thanks for all that. After meeting with the MO today (who I loved!) I think I'm doing the neoadjuvent chemo. I'm waiting on the MRI that I will have Wednesday, but that seems to make the most sense. He did talk about the potential surgical complications and that does make a lot of sense too. I appreciate you sharing that that was your experience. I do meet with the plastic surgeon tomorrow so I'm curious to see what she says about even doing surgery right now.
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Wahoomamma - sounds like you have a good team in place and are asking the right questions. Stay close to those of us on the threads.
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Hey all - I'll be starting chemo on the 8th. Joined the April 2020 group here. The plastic surgeon did confirm (as I suspected) that the hospital is not allowing any reconstructions right now. And discouraging even mastectomy unless it's very urgent. So chemo it is so we can get started dealing with this. I would love any personal tips and tricks for chemo. And any suggestions for caps/scarves sources to cover my inevitable bald head.
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- Wahoomama TCH chemo is very easy on some, harder for others (it was hard on me, but not as hard as with the addition of perjeta for my first few cycles), so for some things you'll need to wait and see how it effects you.
- Nausea tends to not be much of an issue, but other G.I. effects might be a problem (diarrhea or constipation, indigestion, heartburn, stomach or gut pain) so it's good to have meds for those things on hand.
- An extra gentle toothbrush and mild flavored toothpaste for mucositis, soft bamboo "liner caps" on amazon for prickly scalp pain at night as your hair falls out, lots and lots of Kleenex! I also relied heavily on artificial tears, KY jelly, and good body lotion- chemo really dried me up insode and out, and made all my mucous membranes raw, bloody and painful.
- Stock up on easy snacks and meals, prep stuff and freeze ahead etc. Many people have taste buds affected and water tastes awful but sweet and sour things taste good, so have lots of beverage options (ginger ale, lemon lime soda, lemonade etc).
- I started to get neuropathy right away, and nipped it in the bud with good quality glutamine powder (10g 3x a day). Some people ice hands and feet during chemo for this. Good luck!
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I asked my Dr about neuropathy he suggested 100mg of B6 (1xday) and 600mg of Alpha Lipoic Acid (2xday).
@HeartShapedBox is L-Glutamine Powder, the same thing? When I went looking for Glutamine on Amazon I could only find "L-Glutamine" Powder. I think it's the same thing, the directions are 5mg 2-3 times per days mixed in a shake.
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morrigan - I used a capsule of B6 (100mg) per day and 30g of L-Glutamine powder, in 3 doses of 10g, dissolved in a cold non-acidic drink. Both are thought to help prevent neuropathy, or lessen the severity. Alpha Lipoic Acid is also on the list of supplements that may be helpful. I also used Acetyl L-Carnitine, but a later study showed issues so some oncologists stopped approving and/or recommending it, although they used megadoses in the study. I had six infusions if Taxotere/Carboplatin/Herceptin and did experience neuropathy on the bottoms of my feet, fingertips, and tongue from the outset. For the first three infusions the neuropathy resolved by the next infusion. From the mid-point on it stayed but by about 90 days PFC (post final chemo) it was gone. For everyone, check with your MO before using any supplements during chemo
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About hats and scarves - I picked up many at local thrift shops. My favorite - a rather non-descript straw hat (in AZ need a brim) which I tied the scarves around. If you just want to wear a scarf, get scrunches to made them the tightness you want. I like "newsboy" hats better than baseball caps. I actually liked my bald head better than the bald spot I have now from the letrozole. As I watch my gel fingernails fall off, I think I won't replace them. If I have to wait too many months for a trim, I may go back to bald.
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Yes, (l)-glutamine is just an amino acid, the most abundant one in the human body. Protective of nerves and g.I. tract. I used "Naked" brand from Amazon (high quality without the ammonia scent i researched cheaper brands could have). 5 mg 3x is the normal dosing, and 10g 3x recommended for chemo, but only needed for a week each chemo cycle, starting the day before chemo.
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Mary's magic Mouthwash made all the diff - I had severe mouth sores even though I rinsed with baking soda and salt 10 times a day. Rx at CVS.
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Hello mam! How are you doing today?If you dont mind me asking. I just want to know about your treatment for breast CA? Any inputs from you is greatly appreciated.
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HeartShapedBox - can you tell me why you dropped Perjeta? And also can you tell me about radiation - why you had it and how it was? Thanks!
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rljes - took me forever to get my MO and NP to prescribe this for me. Sometimes they just really don't listen.
Stay safe everyone! ❤
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All - steroids during chemo? Pros? Cons?
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Steroids kept me up at night until they wore off. (MO prescribed me Ativan to help me sleep on those nights.) They also give you some energy, which was helpful because I worked through chemo. I guess they also did their job; I never had a bad reaction to chemo.
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I hated the steroids, but I was getting pretty bloated towards the end so I guess I needed them. I had the steroid crash every time I stopped taking them, and after the first round I had these weird diaphragm spasms that caused me to forcefully exhale every time my heart beat. I called the 24 hour emergency line dragged some poor resident out of bed for that because it scared the bejeesus out of me and he said it was a rare side effect of getting off steroids. It only happened on that first round though. They didn't keep me awake like most people, unless you count having to get up every three hours to pee.
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