IBC lounge: roll call, support and just a good place to hang out
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I never had a dose reduction when I was on AC, only when taxol came along since I had bad side effects from it.
I would not worry about a dose reduction yourself as it will still be effective. Places won't give a subtherapeutic dose that would not have any effect on the cancer as these drugs are so expensive. Your MO knows what they are doing with dose reductions. I am interested in the aesthetic flat close, that would be better than what I have. All the best with your treatment and surgery.
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LW, I agree with Mara. Don’t worry about the dose because, I believe, they are mostly set higher than necessary to be super effective. This often leads to side effects. Rest assured that the treatment will still be effective. The lymphovenous bypass will be interesting, not sure it was an option when I was treated. Keep us posted.
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Hey Mara. Thanks for the encouragement; everything seems to give me anxiety lately. I know you are right about not administering a non-theraputic dosage.
As for the aesthetic flat closure, more and more women are speaking out about the unsatisfactory scaring from mastectomy, especially when they choose no reconstruction. There are MANY posts here on the forum about people choosing the aesthetic flat, since they don't have to deal with hanging skin or "dog ears." A plastic surgeon will be closing my surgery as well as doing the microsurgery lymphovenous bypass. I will have more information after I meet with him next month.
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I agree with Mara and I agree with TT! I did ok with TAC but needed a dose reduction when I did Xeloda. I asked my oncologist the same thing..."will it work if we reduce the dosage?" She said yes, it'll work. It's been almost 10 years so she must have been right.
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Hiya TT. Thanks; it's so hard for me to settle down and just trust that my doctors know what's best for me. So far the reduced dose has been MUCH easier on me; normally by today I'd be plastered in bed, but today has been fairly easy.
The lymphovenous bypass is relatively new; I believe clinical trials were still going on in 2019 though the procedure has been around since 2008 or so. (I may be off a few years; I have chemo brain.) It is also called the LYMPHA procedure and it's pretty hard to find any long-term success rates because there aren't any long-term results yet. But I am willing to try ANYTHING that might prevent the onset of lymphedema. (This process attaches cut lymph channels directly to blood vessels so the lymph has a way to drain after the nodes are removed.)
Thanks for writing; I wish others would come back and help keep this thread alive. Hope you're doing well these days.
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Hey SBE! Thanks; that's very reassuring. I love hearing from you long-timers and I hope you're doing well. Thankfully I got through 2 full doses, had 1 reduced dose yesterday, and only ONE MORE TO GO!!! Thank goodness; it seems like my entire life has been in chemo after starting with Taxol in February. Next I'll be whining about surgery, and then radiation.
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LW422, you are still in the thick of it when it comes to all of your chemo, surgery etc. It is still a new dx you are dealing with. Of course you will not be settled. Gradually as time goes on and you are finished this treatment, you can breathe again. I remember feeling quite overwhelmed, from 2015 before I knew I was Stage IV and getting used to all the treatments and just having cancer to dealing with the 10 cm brain met in 2016 and subsequent surgery and brain radiation. I am still no evidence of disease from the neck down for 6 years almost and clear in my brain since 2018. It is a long road that you only need take one step at a time and you will start to feel less of the intensity of the fear and start living with cancer as part of your life, hopefully not forever though. Fewer appointments help us to forget the cancer side of things and move on with other things in our lives. That is where I am at now and I am hopeful it will be the same for you.
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Thanks Mara, you are always so kind. I hate always sounding so whiny when I know everyone on this forum has walked (or is walking) the same scary path. I hope that someday I can look back on this as just another challenge, and I hope that I can be as positive and helpful as you. It means so much that you take the time to encourage people like me.
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Hi Members:
I have an important question. When a person is on an AI i.e. Femora/Letrozole for 10+ years should they be going off of it for a certain length of time? We have such few Oncologists, I can't possibly make an appointment for one question, although it is extremely important to me.
Every opinion or fact will be given a lot of thought.
Thank you in advance, it's greatly appreciated.
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Hi:
For me the chemo infusions were the worst I can't explain how very awful I felt. I would get thrush with big blisters in my throat and entire mouth. My gums would be so swollen often I could not close my mouth. I had many horrific side effects especially with Taxotere (?). Two weeks after chemo (which took 6+ months, surgery and radiation. I found both of these were very easy to handle, perhaps because all the suffering with the chemo. I had beautiful teeth with one back one missing, after chemo slowly they broke off at the gumline. Many years later I still have probably 24 roots in there and no teeth. Why I didn't have the 24 roots cut out is a long and boring story in itself. However, I'm very happy to be around today to complain.
Wishing each of you the best.
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Trudy-erl--sorry I don't know about long-term AIs, but you might get more responses if you post your question on the Hormonal Therapy section of the forum... https://community.breastcancer.org/forum/78
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Not sure if this is appropriate to share, but I discovered that the IBC Network group from Facebook has established a new website and forum for IBCers. (This is the Terry Arnold group.) I recently signed up and it seems like another good resource to connect with patients sharing this Dx. Here's a link if you have any interest... IBC NETWORK
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LW422 yes it is a great group!!
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Missmom79--are you on that forum or just the old Facebook group? Seems like the forum is struggling; people don't like the interface when they are used to FB. I don't do FB so the forum works for me. It's nice that it is EXCLUSIVELY for IBC, though. There is nothing that compares to a discussion with people who have the same diagnosis, which is why I wish this board was more active. I see people on other parts of this forum with IBC but they don't seem to post here for some reason.
Hope everyone is doing well. I'm feeling OK after my last AC; only one more to go then I'll be whining about surgery.
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I'm not on FB either so I was happy to sign up at the new site five days ago. Unfortunately, I'm still waiting to be approved or rejected.
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Shycat--it does take about a week or so to get access, so don't give up. They are experiencing growing pains but hopefully it will ultimately be a valuable place for IBC information.
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I remember this when it was not Facebook or whatever it was called back in the day and was rebranded again. I do wish we were as active as some of the other groups, stopping in to say hey to each other. This is the only group besides the brain mets group that share something unique with me. I am commonly found on Stage V MBC fitness thread and the My Husband My life, My Love, My Cancer which is in Stage IV section but it is open to all stages to come and talk. It's like a living room where we talk to each other about life, not only cancer but what we do or cook, exercise, keep track of scans and just chat and support. That is a pretty busy thread too. I would love to see us here as well too.
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I feel like IBC diagnosis is such a mystery & docs like to go aggressive on it. Stronger chemo. Met with radiology onc. He wants to go 6 weeks of daily radiation including the neck area. Was hoping for 4 weeks. Hope it kills everything but not my skin. It will be better than chemo tho. Just driving by the hospital makes me nauseated. Anything related to treatment, a bag, jacket, etc. makes me nauseated. Thanks LW422 for that IBCgroup info. Surgeon said she will remove level 1 & 2 nodes & do some mapping. I have a consult with PS to do the closing. Hope she can save some nodes too.
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Hey Mamacure. I agree about anything to do with chemo. I get a sick feeling if I see an IV stand... almost like PTSD or something. I hope I NEVER have to smell those "chemo smells" again. I'll be so glad to have this behind me.
I haven't seen the RO yet but I'm surprised they want to radiate your neck. Did he say why? I don't know if I'll agree to that; I want them to stay below my clavicle for sure. I'm already upset about having 2 levels of lymph nodes removed whether they show involvement or not. Seems like we just don't have any good options so I hope all this torture will be worth it.
The other site is having growing pains and it takes a while to get "authorized." I hope they can get it together and provide another resource for IBCers.
I hope you're doing OK and hanging in there. I'm already getting nervous about my surgery which is scheduled for August 23. Take care and keep in touch.
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Hi LW422, your surgery is next month! Mine is scheduled for October. Can’t wait until it’s done. Surgeon said more & more are opting for flat closure. She will map the lymph nodes to see which are connected to the arm. She expects good recovery with PT, etc. RO said that one of the first area it can spread to from lymph’s are the neck area near the clavicle. I may have to do the breathing technique to spare the heart since left breast. He said 5-6 weeks after surgery to get started. Minimal nausea expected. Yay. Plz keep us posted on your progress!
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I do wish I had known about the flat closure option when I had my mastectomy. I have the lumpy and bumpy look which is not too distressing for me but a flat smooth closure would have looked better.
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I'm so glad you are here mara51506, I read some of the other threads you mentioned. It really puts things into perspective. I'm sorry to complain at times, but I'm sure you 'get' it and seen it. Thank you.
I wish I can go flat both sides, but don't want to touch 'what's not broken'. Faster healing time the better, I plan to use a stuffy to even the girls out. I will be a uni-boober, I just saw that it is recommended to get a therapist for masectomy. That might not be a bad idea. Self image, coping, etc. Although with COVID, therapists are very hard to find. Long wait list. I am pretty strong but not as strong as I used to think.
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mara51506, if you're distressed by the lumps, bumps and rolls of your mx scar, it's not too late to consult a plastic surgeon and have a simple procedure to flatten out and neaten up the scars. My mom had this done and was very happy with the result. My original umx scar was terrible, and I lived with if for a year until DIEP recon. Had I not opted for recon, I would have been at the plastic surgeon's demanding something be done about the mess on my chest.
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Thank you for the information sbelizabeth, I will look into that.
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I had a MO appointment today; my LAST AC is Thursday. I am so ready to be done with that! Next week I have a ton of appointments "surgery planning," etc. I dread it because I'm usually flattened the first week after AC so I'll be dragging anchor and feeling weak.
I was talking with the NP at my MO's office about the surgery; she told me that most of their mastectomy patients are having the lymphovenous bypass done now! I was really surprised but happy to hear that it is becoming a mainstream procedure. I'm hopeful that it will make a big difference for mastectomy patients to not have to worry about having lymphedema! Of course there are no long-term effectiveness studies yet but this is a positive step in my opinion.
Hope everyone is doing well.
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LW422, Are you sure a lymphovenous bypass would be arranged out before:you know you will need all (or even some) of your lymph nodes removed? This seems an extra procedure at a time when the mastectomy is the important surgery and the one that takes time to recover from.
Looking at the MSK site:
https://www.mskcc.org/cancer-care/patient-educatio...
"LVB surgery can be done to help treat lymphedema caused by blocked lymphatic vessels."You wont necessarily get lymphedema, and certainly not right after the Mx.
I had all my lymph nodes removed on the Mx side (called an axillary clearance) seven years ago and have never had lymphedema.
Of course, we're all different and surgeons are too, but I'd do some more research on this.
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Traveltext--the standard IBC treatment protocol at MDA is that 2 levels of lymph nodes are removed with the cancerous breast whether the nodes are cancerous or not. It frustrates me but that's just the way it is, especially since I only have one node that appears cancerous. The lymphovenous bypass as part of the mastectomy is fairly new, like within the past 2-3 years, though previously it has been widely accepted as a solution for patients who already have lymphedema.
I seriously doubt that MD Anderson's IBC Clinic would allow the bypass if it would impede surgical healing, since they don't recommend the prophylactic removal of my "healthy" breast during the mastectomy. I will be meeting with the plastic surgeon who does the bypass in the coming weeks to get more information since I have many questions. I am curious to know if there is any "success rate" data available since the procedure hasn't been done for long.
I have read that IBC patients have an increased likelihood of lymphedema (I suppose because of the increased lymph node removal and radiation) with occurrence rates as high as 50%. To this point I seem to always fall in the "unlucky percentage group" so I am willing to have the bypass to help prevent a problem down the road.
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LW422. Certainly the success rate of this op should be at the top go your question list. I can't find a study.
Sentinel node testing is pretty standard, and lucky you to have only one with cancer, but if the decision is made to leave the other 20+ nodes, your chances of getting lymphedema is very low. Sure, lymphedema risk is higher when you have all your nodes removed, like I did, and radiation does further exacerbate the situation, but my BS was adamant my lymphedema risk was low.
I know MDA has the best IBC clinic in the States, and they certainly won't do anything unnecessary. You'll likely make the best decision based on your meeting with the plastic surgeon.
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just reading the thread and not sure if I should be worried or relieved by some info. I had LMX. With only 7 lymph nodes removed in January. Initial Imaging showed positive node involvement in levels I, II, and 1 node Supra-clavicular. Also internal mammary involvement. Repeat scans prior to surgery showed only 1 node possibly still affected. I did have pCR st surgery for breast & nodes. Because I would have to have radiation, it was explained that could kill remaining CA cells if any, so removing nodes not absolutely required. Decreasing lymphedema risk. Quite a difference of opinion among specialists it seems.
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I am 5 treatments away from completing Herceptin & Perjeta and echo just showed decreased ejection fraction ( heart function). Had to hold this months infusion. Has anyone else experienced this? Does heart function improve ever with holding dose? If so, are any alterations made to dose, frequency, or dropping Perjeta? Concerned ! No other recommended treatments for me after this, and MO doesn’t do surveillance imaging or bio markers because they are not tecom
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