Response to neoadjuvant chemo?
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Chemo also destroyed my nodes. None were left even though I had a ALND. No cancer was in the tissue from under my armpit though. That made me feel good. There were no lymph nodes in the breast either, but there was 2 mm of cancer where 2 lymph nodes had been. This is the first I have heard someone else say the cancer destroyed their lymph nodes. Now I have a pretty severe case of lymphedema.
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My surgeon said she counted about 20+ nodes when she was doing removal, but pathology counted 11. She thinks this was because they were mush after cancer/chemo, hard to dissect them from each other. After they get to a point where they aren't finding more positive ones, they may stop trying to count them individually. Makes me wonder what the rest of my lymph nodes in my body are like and whether they recover? My veins also seem to be in bad shape after chemo. I didn't get a port before chemo and make it through 6 months of chemo with no issues, now they can't seem to find a vein.
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Meg, I was just wondering the same thing?? How are the rest of the nodes in my body?
Are any of you doing anything specific (besides diet and exercise) to boost your immune system after chemo? I still have really low lymphocytes, and mildly low platelets. I know it takes time, but wonder if anything helps.
Am considering going to an integrative oncologist? I feel like we need a good immune system to fight any rogue cells that might be in our bodies.
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mom of twins, before chemo, they biopsied one lymph node which was positive, the tumor and calcification. Then I received neoadjuvant chemo, April thru September, and did UMX 10/5. During surgery the BS took out 3,SNL and said they are negative because no tissues left after chemo. He never mentioned about axillary lymph nodes, or other SNL that are still in there. I personally feel this doctor is not focused on what he's doing, does he supposed to study my left breast US before surgery. Thinking back I should have gone to MD Anderson.
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Houston, if the doctor removed 3 sentinel lymph nodes and they were negative (as he told you), there wouldn't be an indication to do a full axillary dissection. I think that's a really great prognostic indicator for you if the nodes were negative after chemo! They generally will only do an axillary dissection if there are positive sentinel nodes, and more recently, they are actually leaning toward removing less nodes and relying on radiation to kill remaining cells (Z11 study).
So if I'm understanding correctly, I think this is really positive for you!! So the chemo must have killed the cancer in the node originally biopsied.
Also, like you, I only had one lymph node originally biopsied for initial staging. Then after chemo, my SLN biopsy showed that 2/3 were positive. So during my mx, they took more nodes, but I only had 2 others. It sounds like everything was done as it should and it's so great they didn't find any cancerous nodes after chemo.
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Yes, ALND is very rare. I had cancer in the lymph nodes in my arm pit, that is why I had to get the ALND. I wouldn't worry about the lymph nodes elsewhere in the body. I think the chemo only attacks lymph nodes with cancer in them. I have lymphedema in my right arm, but all the rest of the lymph nodes in my body are working fine. Take all the precautions you can to stave off lymphedema though. Don't get blood pressure, blood draws or shots in your affected arm.
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Mom_of_twins I went to an integrative medicine doctor (not Oncologist) and he gave me a slew of supplements and instructions. I found it to be totally overwhelming, but I am also still in treatment, maybe later it will seem manageable. When they are not in conflict with my treatment, I have been taking some of the supplements he recommended (he sort of ranked them based on importance so I try to get to the most important.) Most are aimed at inflammation. I am also continuing acupuncture, I started it for neuropathy, I found it really worked so I continue to do it to reduce inflammation and increase immunity once a week. I hope this week to start to get back to yoga, I feel like it packs the one-two punch of some meditative qualities and also fitness and stretching. So I guess for me, focus is on boosting immunity and reducing inflammation. Will I be able to keep this up for years and years? We will see...
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Thanks, Meg! I think I'll go see someone so I can get started on supplements, etc. I just want to do everything I can. I am also enrolling in the Palbociclib trial soon, so if I'm in the experimental arm, it will knock my immunity down even more. I might call tomorrow to make an appointment with the integrative oncologist. Quite frankly, I'm so tired of appointments, but want to do everything I can.
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Mom - fwiw I had 4 removed during the SLND, and then another 8 removed during the full ALND. So 12 nodes removed total. I'm average height, average weight. Definitely not the 20-30 that seem to come up often.
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mom of twins, that does sound encouraging, but somehow I kept thinking about other lymph nodes. But my OC recommended radiation and hormone treatment afterward. That makes sense. Thanks.
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fighter-thanks. Yes, it does seem like not all of us had tons of nodes. It obviously just varies by person and treatment response, I suppose? I just hate worrying about the nodes, as I know we all do that had lymph node involvement.
Houston, yes, the chemo obviously worked very well for you. I was told that if it "cleaned out the nodes," it was a very favorable prognosis (which is one of many reasons why I freak out since I still had two positive nodes.) I think that since it cleaned out at the least the one you knew was positive initially, and then having two others negative, you should feel reassured.
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Still no word on my scans. Really hoping I can go into the weekend with good news. Now I've managed to convince myself my urine is darker than normal (but I don't really think it is).
About the nodes... my surgeon offered a SNB bc my nodes appeared clear in post chemo imaging. But I opted for the ALND because they had been positive at the start. After surgery, the surgeon commented that they looked clear, but pathology came back with 7/15 positive. I take all of that to mean that chemo significantly reduced the cancer in my nodes even if it didn't get it all. And I'm really glad I went ahead and asked for the ALND.
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Hammie, it is disconcerting to me that the imagery did not detect your 7 affected nodes. Was that a breast MRI?
I trust that if a SNB finds several affected nodes, they tend to proceed with ALND. I guess what i want is to feel confident that we have all the relevant information, with as few nodes taken as possible to do the job.
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Hammie, any news yet?
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Mom of twins, I'd like to know how long did you have to wait after your surgery to do next treatment, radiation, and hormone?. It has almost been a month since my surgery and I'm very anxious to start on with rads. I heard of there are too much gap in treatment, any remaining cancer cells can be proliferating or spreading. Is this true or I'm imagining things?
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Hi Houston! I started radiation exactly 5 weeks after my bilateral mastectomy with direct implants. I think most people start between 1-2 months after surgery. Yes, there are standard of care guidelines (I don't know exactly what the exact time period is), but a month isn't too long, so I wouldn't worry yet. Do you have a tentative date to start rads?
As far as hormonal therapy, I didn't start ovarian suppression and AI until a few weeks after rads ended. I do know women who started hormonal therapy after surgery and during rads. My doctor prefers to do only one treatment at a time.
Hope this helps.
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Mom of twins, I suppose to start radiation in November. My OC gave me the Arimedex and said it can be taken with radiation. I'm planning to talk to another Rads OC about proton therapy at MD Anderson. I heard it can avoid heart lung damage SE, since my bc is in the left breast. Thanks.
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Houston, November sounds like a reasonable period of time. I wouldn't worry about spreading, etc., as that time period seems to be the norm. They do want you to have weeks of healing before they start radiation.
I also was a candidate for proton radiation because my BC was on the left side. I was told the downside of proton therapy is that's it's harder on the skin and reconstruction, but does more precisely target the desired areas, while sparing the other organs/tissues.
I ended up doing conventional radiation, but a very sophisticated technique. IMRT/RapidArc with the deep breath hold. The 3D mapping showed the deep breath hold pulled my heart completely out of the radiation field, so that's what was ultimately recommended.
I'm glad you're exploring proton therapy; I'm a big believer in evaluating all available options and then making the best decision. Keep us posted and good luck with everything!
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Houston - I was panicked too about the gap between surgery and rads, I was delayed for ALND, but one of my best friends is a rad onc for head and neck and her teams researched waiting times and didn't think there was an issue at least for three months. She said she sometimes treats people six months out and considers it efficacious. It was eight weeks for me. Eight months later they found some positive nodes just outside the field treated and I had rads again to that area with the breath hold technique nearly a year after the first round. We all believed that was worth doing so it put a new perspective on wait times for me. My top tip - make sure they're going to include your Internal Mammary nodes. They will at MD Anderson, they advised my team in the UK how to retreat the area. Not everyone does - though I think guidelines are changing so they will in future. Good luck and take care of yourself during rads it can be hard on some people
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Mom of twins, I'm glad you had radiation safe and sound. I have always been weary about rads so I heard about the new proton therapy here in Houston, so I like to check it out. Yes I heard we use breathing techniques to keep heart away from rads. I planned to talk to both rads OC then make decision from there.
SSinUK, thanks for giving me info about time delay, drs never tell you anything, that's why I'm glad for this board. Even though two months may be OK but my mind would running wild with all the what if...so I just like to push things ahead to move forward to next step. But it secured to know though. Thank you ladies.
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I am happy to report that I have a Fatty Liver! I was convinced that couldn't be the case for because I am not obese so I was just sure my enzymes were elevated due to mets. I'm soooo relieved!
About my nodes, pre-chemo they were palpable and showed up on breast MRI and PET. Midway through chemo they were no longer palpable and did not show up on a breast MRI. I am sure the SNB would have caught them even if I hadn't done the ALND, but I wanted to just go ahead and be as aggressiveness as possible. Plus... I think that you have to go back for the ALND... is that right
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Hammie, congrats on the fatty liver. Woot! So great to get good news like that after being scared. I had liver MRI results last week that showed the thing they could see is benign. Scary stuff, waiting for important test results.
As a side note, my oncologist said that if they'd found a few small mets in my liver, they have a way to treat those specifically and they would not consider it stage IV. It is an amazing time to be alive.
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Oh Hammie!! Great news!!
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Hi everyone, talking about integrative therapy, does the OC approve for the supplements that you're planning to take besides hormone pills? I'm also interested in boosting my immune system and had researched a slew of herbs and supplements. Some came from Asia but I found out that some of the herbs may be hormone related. My sister happened to be an oriental medicine doctor, and an acupuncturist. Somehow I prefer getting a massage and water therapy. I think acupuncture is usually if you're in some kind of pain (such as during chemo).
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Hi all, I have a question about TE, since my UMX and reexcision, the TE was placed and sometimes I feel hard like a rock, then it moves. I don't know if it's even worth it to do implants as the BS has cut more of my skin. I feel uncomfortable sometime with TE in there with the risks of infection. If I decided to go flat should I waited till rads are done then have TE removed or vice versa? Thanks .
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Houston, my oncologist isn't a big fan of supplements...she's okay with Vitamin D and Calcium because I'm on an AI and soon to be on Prolia. She does encourage other integrative treatments, such as yoga and acupuncture. I think if I were to consider taking supplements and herbs, etc., I would go to an integrative medical oncologist.
There's an integrative cancer center here that I'm considering getting a consultation with, and see what they say. Maybe there's one near you? I'd like to rebuild my immune system, too. My lymphocytes are still so low....
As far as the TEs, hopefully someone else can chime in. I went direct to implants so not familiar with that process. Good luck!!
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My oncologist wanted to approve any supplements I was taking. During chemo it was vitamin D, Magnesium, Biotin (just trying to get my hair and nails back in decent shape), Green Tea, multi-vitamin that was specifically for inflammation and Tumeric. I cut out everything but the Magnesium and Biotin for Radiation, but will try the others after I am done. They helped with the joint pain I had during chemo and hopefully now with AI. Acupuncture helped a lot with my neuropathy, I may also try it for joint pain after radiation.
Houston2016 I have tissue expanders. They aren't fun. The forum "TE's a beginners primer" is a good place to ask questions. I don't think I've had the specific issue you are talking about. Do you mean your pectoral feels hard? I did have that, more at first, now as they are stretching I don't have that as much. Muscle relaxers are supposed to help, although I never took them.
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I've been taking vitamins D, through out chemo and now like to take more stuff like reishi extract, green tea extract, curcumin, but I guess I have to wait after rads. Not sure how these herbs supplement interact with Arimedex. TE feels fine at some point just yesterday it just froze up and I touched it and it's hard like cement then it gives me some sensation. I just think it'd worse when they inject the saline and stretch them, it must be torture.
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How's everyone doing? Haven't heard from you guys in awhile. So I'm going to enroll in PALLAS (Palbociclib trial) probably by the end of the month. I'm also supposed to get a Prolia injection soon, but need to get some dental work done first (yuck). I hate dental work.
Just thinking about everyone, Check in when you can!
Also would love to hear from others regarding their response to neo-chemo!!
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Mom of twins, what kind of dental work are you having done? I'm on Prolia too, and I asked my dentist about it. He said cleanings, filings, crowns, stuff like that is not a problem. The work they get concerned about is when they have to work in the jawbone itself, like root canals or implants.
I hate dental work too. Maybe an iPod and earbuds?
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