IBC lounge: roll call, support and just a good place to hang out
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Hi and happy new year to all of you!
First time poster here! Just diagnosed with stage IIIC triple neg IBC in November 2021. Genetic testing negative and no family history of breast cancer. Just finished 3rd cycle of Taxol/Carbo/Pembro and tolerating it well with noticeable shrinkage of axillary lymph nodes on palpation and breast looks almost back to “normal". Will follow the TC with AC then planning bilat mastectomy then radiation.
I'm 36 years old and have 4 daughters ages 4, 2 and two 7 month old twins. Had been breastfeeding the twins which led to misdiagnosis of mastitis by several doctors for 6 weeks before finally getting a biopsy to confirm our worst fear.
I've been reading through these threads and it's comforting to hear of others that have done well with treatment. Hoping I will be here for a long time for my girls!!
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PreciousBecky, I am sorry you had to join the club no one wants to be a member of. As you read through this thread, know that treatment works quite well for a long time and are getting better all the time as well. We are here for questions and if you have triple negative questions, there are threads that include it if searched for and anyone here who is triple negative will help too. We will support and go in your pocket (means offering support during surgery or scans) with warm thoughts and kindness as well. Welcome.
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Hey everyone! Sorry it's been so long but I wanted to wish everyone a Happy New Year. Hope everyone is doing well.
I'm still doing okay. Still on Enhertu, the first drug that's actually worked for me. It isn't shrinking any of the mets but it is keeping me stable, which is the best I've been able to hope for since the start. Just had my most recent set of scans last week and I'm still stable, for a little over a year now. That drug was approved just in time for me! It's a hard drug but my care team does a great job helping me manage the side effects. I'm still physically active and my body is staying fairly strong despite all of the places I have mets. I know I am very fortunate.
One weird thing that happened this past year (since I'm the one who always has weird things happen haha) - I didn't have surgery so I still have all of my lymph nodes. Last summer the ones on my right side decided to stop working even though they were clear of mets. I developed severe lymphedema. Then I developed a cellulitis infection and landed in the hospital. They never figured out what caused my lymph nodes to stop working. Point of note - my physical therapist did a lot of research on IBC and told me that manual lymphatic drainage is not recommended with IBC since IBC starts in the lymphatic system.
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Wow, it's so great to see everyone!
SBElizabeth--you are an inspiration to all of us with your 10 year mark! Such a wonderful thing; congratulations! Happy New Year, and many, many more.
DeniseML--so good to "see" you and hear that life has returned to normal. I hope your "minor interruptions" remain minor! I agree that my IBC sisters and brother will always hold a special place in my heart. Happy New Year.
Mara--you remain an inspiration to all of us. Thanks for being there and I hope the "real life" irritations will be minimal in the coming year. Happy New Year.
PreciousBecky--I'm so sorry to hear of your diagnosis but so glad you found us. This group was such a help to me when I needed a lifeline a year ago. We'll be here to cheer you on or cry with you during treatment. It's tough but doable. Happy New Year, and many hugs to you.
LoriCA--I'm so glad you posted. I didn't "know" you before but your posts have been an inspiration to me. I'm happy to know that you are stable; that's a blessing. Sorry about the LE, and how odd that you got it. Have you had radiation? (I'm too lazy to search your posts so I apologize for not knowing.) Take care and please stick around and keep us updated. Happy New Year.
To the others in the IBC group who haven't been around in a while, please let us know how you are. Take care, everyone.
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Hi @LW22, nice to "meet" you, although I'm sorry for the circumstances.
I had rads Jan-Mar 2019. We had tried to see if I would stay stable on Herception and Perjeta but the IBC came back with a vengeance. It proved to be resistant to chemo this time, so they decided to try frying it because it was spreading very fast. In fact my rad plan had to be modified twice because it kept spreading right before our eyes. That was my second thought - damage to lymph nodes from a very high dose of rads - but they said too much time had elapsed for that to be the cause. They even called in a radiation oncologist for a consult and he agreed that too much time had elapsed.
In 2020 I had mets all throughout my lymphatic system, clusters of nodes in my chest and abdomen. So my first thought was that the mets had returned to the nodes in my axilla, but a scan showed that they were currently clear.
It's a mystery. No one knows why they just stopped working one day.
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Hi Everyone, just dropping by to wish everyone Happy New Year and wishing 2022 to be good to everyone!
No new updates for Nicole other than she bas a full head of hair, really soft & thick hair, lol. Still struggling a bit with neuropathy in her hands and feet, mostly likely from Taxol. Hopefully in time neuropathy will go improve. Nicole still has Herceptin once every 3 weeks until August.
We are currently in Florida on a 2 week vacation enjoying the warm weather.
Is there any reason to ask for a CT/bodyscan every 6 months as follow up?
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Hi Lori, and thanks for the explanation. May I ask where the LE occurred (arms, trunk?) I know that rads can often cause LE but I had not heard of a "time elapsed" factor. Interesting. I'm just glad they got it under control and glad your nodes are clear! Here's hoping that you remain stable for years to come.
Hey Peter! Glad you and Nicole are getting a vacation and she has hair! I also have a head full of "fluffy" hair; not at all like my previous straight hair but I'll take it. My MO says I won't have anymore scans unless I have a concern (which is in itself a little concerning!!) I imagine different MOs have varied approaches, though. Happy New Year to you and Nicole.
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Dear LoriCA, I am so happy to "see" you, I have no words... Yes, you really are "since I'm the one who always has weird things happen haha":) And this time you rose like phoenix from ashes - I checked and your last message was on 11th of Jan 2021, crazy - I cannot stop smiling:)) Saulius
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Sorry it was so long Saulius, time just got away from me. Just getting through day to day life on the property keeps me busy because there's always something that needs to be done. I'm still only halfway unpacked and rooms are filled with boxes. Hopefully the Ritalin will help me get on top of that.
LW422 the swelling is from my shoulder to my wrist, and occasionally my hand, on my dominant side. That is the side the cancer first started. There's still mild swelling even with compression, but not bad enough to go back to those 7 layers of wraps I had to get through for a few weeks.
I follow the Executive Director of MD Anderson's IBC Program, Dr. Naoto Ueno, on Twitter and he recently posted about their new trial that may be of interest to some. I'm going to keep my eyes on this one since I've been resistant to so many drugs. It's for metastatic IBC right now, but often drugs that are very successful with metastatic patients are later used with early stages. His post said,
"Prostaglandin is a fascinating target of IBC. IBC has very high levels of certain prostaglandins compared to non-IBC. We are excited that we opened a clinical trial based on EP4 inhibitor combined with chemotherapy for metastatic IBC."
The trial is NCT05041101. It is Grapiprant and Erubulin. TT you will be happy to know that men are included.
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Hi Lori. I'm glad your LE is relatively controlled. Do you do anything to manage it on an ongoing basis? I had a lymphovenous bypass at the same time as my mastectomy so I am hoping that it will be effective in preventing LE. I had 32 nodes removed!
Interesting; Dr. Ueno is my MO! I just love him. When I was in treatment and having a hard time with AC, he had to travel for a conference in Tokyo. He actually called me from Tokyo to check on me after my chemo that week. I couldn't have had a better doctor. I'll see him on February 8 for my 3-month followup visit.
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I just wear a compression sleeve every day. Since my PT advised against manual lymph drainage there's not much else we can do. They did bring up the surgical option, but I told them that since I'm Stage IV and already 4 years in to this, I'm not interested in elective surgery for something that doesn't cause me pain and doesn't interfere with my day to day life. Even when my arm was swollen to 3x the size of the other, I still had full mobility and use of the arm.
You couldn't have a better onc than the director of the IBC program at MD Anderson. Glad to hear that he has a good bedside manner too.
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Oops I did it again!
I walked to the cancer clinic just fine though the temperature was just above freezing. Lifted legs almost like I was marching. When I left after my Herceptin, did not take the lowering temperature as being an issue. Was going to the intersection down a curb with a ramp. Wouldn't you know, foot slid right out from under me and landed on my generous butt. I was lucky I was not hurt but a couple of kind girls who just crossed saw my tears. They helped me up and I made it home without incident.
Having said that, walking overall did feel good but think for walking on sidewalks that are not completely clear and dry, cleats will be mandatory. Bring along a second pair of shoes as well to change into when grocery shopping or whatever. Not gonna stop walking though as it has been many years since falling due to slipping on ice. Just the joys of winter in Canada. The almost marching steps I took were quite a workout and I plan to keep that type of walking from now on.
Can't really do much about black ice so just need to wear the traction cleats on my sneakers for walking.
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Go Mara.
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Mara--Oh my goodness, I'm glad you weren't badly hurt! Get those cleats on, girl!!
Lori--I could not be any happier with my MO. Don't know if you are aware, but he is also a cancer patient. I felt like he "heard" me, every office visit, every time. I cannot recommend him highly enough.
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Well, I was lucky this time I did not fracture a bone this time. Cannot let this stop me and also, I need to start training on how to get myself up after a fall as well. I will train on that from home, start from pushing up with a step bench and then eventually the floor.
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Hello everyone,
Just chiming in. My sister is now NED.Thank goodness. Just wanted to share a beacon of hope and the good news. She is on Tamoxifen, doing lymphatic massage and getting follow up scans. She still suffers from severe neuropathy in her feet, but she still keeps going for daily walks!! I think of all of you often and I am grateful for all your support.
Lori, oh my, big smiles to finally hear from you. I would check in periodically to see how you have been with no luck. Warmest hello to you. So HAPPY......you are back.
Take care 💟
Shela.
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Hi all... just thought I'd check in and let you know I am still here! I have been on Xeloda/Tukyasa/Herceptin for almost a year and have remained stable after that progression to the lining of my lungs. My goal was to become NED again but so far not happening. I don't quite have the stamina and energy on this drug than I did on my last treatment, but trying to hang in there and stay as active as possible. I'm glad to see so many of you here! It's nice to come back and see "familiar faces".
Happy New Year!
XO
Andi
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Hi everyone! Hope you're all keeping warm and doing well. My first checkup is coming up soon and I'm not nervous yet! I actually look forward to seeing my MO and the PS. Last week marked my one year since diagnosis. Hard to believe when I look back now.
I've had some annoying swelling along my mastectomy scar that comes and goes and seems to "migrate" around since my surgery last August. I thought it was simple edema that would eventually resolve but I'm beginning to wonder if I have truncal lymphedema since it has been 5 months. I've been doing stretches and some attempts at the MLD with "brushing", but since Lori posted that she was advised against manual lymph drainage I'm going to have that discussion with my doctors. So far no sign of swelling in my affected side arm.
Shela2020--I haven't met you but I'm so happy for your sister! That's wonderful news. I had pCR with chemo but my doctor has not used the "NED" terminology for me; I'm not sure how that is determined but I had no evidence of active cancer last August with surgical pathology. (Also noted that they changed my stage from IIIC to IIIB after that...??? Not sure how that works but I'll take it.)
Hi Andi67! Nice to "see" you, too, and hooray for remaining stable! Do you have IBC? Take care and Happy New Year to you, too!
Mara--I hope you're doing well and keeping those cleats on! I check your posts on the "My Husband..." thread to keep up with you!
Mamacure--how's it going? Have you moved on to the next phase of treatment yet?
I hope everyone is doing well; please check in when you can and let us know. To any newbies reading, please post and join in. IBC is a scary diagnosis, but you'll get support from this group. Blessings to all.
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Hi LW! Is it your 3 month check up already or 1 year follow up? Will they do any scans or just a visit? I like how the downgraded your stage after PCR.
I finally started Xeloda this week & avoided bone biopsy again. Yay. I hope wbc stay good enough.
I still struggle with why all that strong chemo + keytruda did not work for me. I think TNC is scarier than IBC……….. my lymphedema is under control, arm is smaller after rads ended. My PT bandaged my arm and showed me how to do it in just in case.
Wishing you LW & everyone here well! Cheers! Please keep us updated.
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LW422, doing alright and yes my cleats are on my shoes all times unless somehow snow melts and the sidewalks are dry. Otherwise, cleats on no matter how much I sound like I am clopping along. Pain to have to change shoes but better to be safe than sorry.
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Hey Mamacure! My doctor visit is my first 3-month checkup with the MO and PS. No scans unless there is a "concern". I agree that TN is scary, but I suppose any type of cancer is scary. I have tried to ignore all the stats for TN and IBC, telling myself that a bunch of numbers doesn't really mean anything about an individual's outcome. It all just seems like a giant crap shoot. I'm pretty calm these days for the most part and happy to be so!
I hope you do well with the Xeloda and I'm so glad you avoided the bone biopsy! So wonderful that your LE is controlled. LE scares me almost as much as cancer. Did you have a custom sleeve made or just buy one off the shelf? I have wondered if I should get one "just in case" but I don't know how that works. Take care of yourself and let me know how everything goes.
Mara--good girl! We don't want you taking another tumble on the ice. I'm so glad to hear that you're doing OK. Take care and keep warm!
Hang in there, everyone!! Check in when you can and update us.
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Hi LW! I have 2 regular sleeves, a custom one (tighter but fits my short arm better), and a nighttime one. You should have one just in case or just buy one whenever you feel the need. It’s not that scary if you get ahead of it. Sounds like you are doing alright though. My PT noticed some small cording under arms, it doesn’t bother me and she said she will massage it but it will also resolve itself. Agree it’s a crap shoot! Take care! I love your check ins
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HI Peter,
very happy to hear Nicole is recovering from all she has endured. I too had severe neuropathy in hands and feet. It was minimal until after the last chemo Tx. then quickly progressed. Scared the living daylights out of me. Followed up with a Neurologist and he confirmed what other's threads have stated. It was due to Chemo and can progressively worsen several months after all chemo has finished. The good news is it has slowly improved since chemo ( 13 months ago). Hands nearly completely resolved, feet greatly improved as well. My balance improved significantly too. Just let Nicole know TIME can heal some injuries sustained from Tx.
Wishing you both the best life has to offer going forward !
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Hi all, hope everyone is doing well!
Question! I’m now 1/2 way through chemo (will be switching over to 4 cycles of AC next week). Did anyone get imaging during chemo? I discussed with my MO and SO and they’re planning to repeat imaging after chemo is complete, justprior to surgery, but no sooner. Just curious what others experiences were and if that is standard (to wait)? My team is happy with my physical exam (swelling has decreased, skin is soft and maybe just a trace of pinkness that only I seem to notice) but I was also breastfeeding twins when first diagnosed so a lot has changed in there over the past couple months! I’m having quite a bit of soreness/aches in the affected breast and underarm and of course am worried about things getting worse and us not knowing…
Also, I know there are many threads about AC, but if anyone here has any tips before I start it would be greatly appreciated! I’m a little anxious about this so called red devil!!
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Hi Becky. Congrats on being halfway through chemo! My MO had an ultrasound done when I completed Taxol and before starting AC, but I'm sure this depends on your doctor. I wouldn't be too concerned about the scan.
As for AC, it was definitely hard for me. I really struggled with it and had to have a dosage reduction at treatment 3, but I managed to complete the treatment. You are probably aware that each of us has a different reaction to chemo, so there's an excellent chance that it won't be a big deal for you at all. Just remember to drink as much water as you can and try to do a bit of easy exercise (walking, stretches) and to rest when you need to. Also, if you were icing hands/feet for Taxol, you won't need to do that anymore for AC.
I made it through AC without needing any Neulasta shots for my blood numbers and I hope you can, too. I had read that those shots were pretty bad so I was thrilled that I didn't need them.
My best wishes to you for an easy time of it, and for a great outcome!! Check in as you go and let us know how it's going.
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PreciousBecky, I was given AC as my first chemo since my cancer had grown very quickly. I was also given a mastectomy first which was also not standard treatment for IBC. Not sure if AC given as a second chemo is normal or not. I digress, I found AC easier to take. I was made extra hungry with the steroids I had to take, I would crash four to 5 days after and then felt fine the rest of the time until the next chemo. Take Claritin if you are getting Neulasta the day before the shot, day of the shot and day after. Reason for this is to avoid the bone pain of stimulating the white blood cells. Eat as much protein as possible. Your tastebuds will be affected so stick with protein that you can add to foods or else a drink. Will help the energy level and once the tastebuds get more normal about a week after the AC infusion, eat what you like. That is what I found with the AC. I was unable to take the Taxol which was supposed to be gentler but I had more side effects with the Taxol than the AC.
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Hi LW! Thanks so much for the tips! I’ve been lucky thus far with minimal SE’s from the taxol/carbo/pembro… just some mild fatigue and occasional nausea… I’m expecting the AC to be totally brutal on me just to make up for how well I feel so far lol. We will see! As for the scan, I assumed I would have one halfway through as well, so I was really surprised and honestly bummed when they said I won’t get anything until after all chemo is done. I know they’re happy with my response based on physical assessment but I’m the kind of person that prefers objective data!! Also, like you said, everyone’s response to chemo is different, but were you able to tell if the taxol worked better than the AC to shrink any masses/reduce your IBC symptoms or vice versa?
Hey mara! I was also a bit confused when initially reviewing my chemo regimen, as it seems the majority of people have gotten AC first, but my MO is following the new(ish)ly approved Keynote 522 protocol, which does the taxol/carbo/pembro first followed by AC/pembro, and then pembro adjuvantly, as well. Curious why they decided to do surgery first in your case? That is awesome that you tolerated the AC well, and thanks for the tip on taking claritin! My MO isn’t sure I will need the neulasta shots, as the protocol is for AC every 3 weeks (opposed to 2 with the dose dense schedule) so we will see how my counts do. So far my numbers have stayed surprisingly decent, but again fully expecting the AC to kick my butt to make up for it! Thank you for the other tips as well!
It’s great having the ability to talk to people who have been through this, although I still get so, so, SOOOOO mad that ANYONE has to deal with this horrendous disease!!!
All my very best to everyone!!
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Hi again, Becky! I have a feeling you're going to do fine with AC. I also had an easy time of Taxol and my blood work was always pretty good, so I was thankful for not having Neulasta. Honestly, I could never feel any lump at all; I had some skin thickening on my breast and a pink "bruise" about as big as a quarter. It was like that from the get-go, and I never saw any difference except during chemo on treatment day, my cancerous breast would get really red and "angry" looking. (That would fade in a day or two.)
I was surprised to hear that my IDC tumor had shrunk a bit with the first half of chemo since I didn't see or feel any difference in my breast. It was a thrill to hear that I had a pCR after my surgical pathology, though. Those words made every minute of the AC side-effects worth it!
I forgot to mention that I had an increased heart rate during AC that was bothersome but it has leveled off in the months since I finished chemo. If you wear a Fitbit or other fitness device you might notice some heart rate variances but don't be alarmed.
Take care and hang in there!
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Hi Becky,
I also had fast heart rates during chemo like LW. It does normalize. Looking back, I wish I had the mobile nurses come to my home for IV hydration because I had bad bad dehydration. I hope you have some help with your twins during AC so that you can rest. There will be good weeks too when you will be able to do more. Hang in there!
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Preciousbecky, I have no idea why surgery was was done first. When I joined this thread, I noticed that people had surgery after chemo was done. Ì had surgery, chemo and rads
I've been Stage IV all along according to my oncologist and never had mets in my body from the neck down since, just my brain which is fairly stable too. I would say the unusual treatment did not hurt me any.
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