IBC lounge: roll call, support and just a good place to hang out
Comments
-
Hi LW! Thank you for all the info! And congrats on getting pCR after surgery, wow!!! Have you had your 3 month appointment yet? I'm hoping you continue to get great news at every one of your follow ups
Hi mamacure! Thanks for the reminder on keeping hydrated! I've been slacking off on the H2O lately, and I definitely feel worse when I don't drink enough. I'm going to make it a point to do better! And yes, we have had family rotating and staying with us since the day after I was dx'd. My husband is military but we are lucky enough to live only a 7 hour drive/1 hour flight from all of our family. Chasing around four little ones can be exhausting, but boy do I want to chase them around for many, many more years
Hi Mara! I'm happy that your treatment has been working to keep things stable for you, and I hope it continues to for many years to come! How are you feeling these days?
Another question (or two or 3) for you ladies
I meet with my SO in 2 weeks to discuss/set a date for surgery. When we initially talked about it she was recommending a BMX (I have 'extremely dense breast tissue') but I've since read that an immediate prophylactic contralateral mastectomy isn't recommended. I'm curious why? Is it because of a longer post-op healing time potentially delaying radiation? And speaking of radiation, is the standard once or twice per day for rads? And at the initial consult my RO mentioned I may be a candidate for proton therapy vs 'traditional' (photon?) radiation… has anyone had or heard of proton therapy rads for IBC?Thanks again and hope everyone is enjoying the weekend, take care!
0 -
Hi, Preciousbecky23. I wanted a bilateral mastectomy during the first surgery but my team talked me out of it for a couple of reasons. They wanted me to recover uneventfully from the surgery as quickly as possibly, without risk of infection or complication on the "healthy" side, so that radiation treatment would not be unnecessarily delayed. Also, I knew I wanted a DIEP reconstruction sometime down the road. Leaving the healthy breast intact temporarily made it easier for the plastic surgeon, in that the healthy side was removed and immediately replaced with abdominal fat. He did a delayed DIEP on the other side.
I wish I could intelligently answer your rads questions, but my treatment was ten years ago and I know protocols have changed. I've read about twice-daily treatment plans. I can't contribute anything regarding proton therapy. Good luck! SB
0 -
Hi again, Becky. I have my first 3-month checkup next Tuesday! I'm not nervous... yet!
I completed radiation on November 15; I had 33 treatments--once a day, 5 days a week. My RO told me that I would have had treatment twice a day if I had been younger (under 40?? I can't remember the age cutoff) and had not gotten pCR. So your treatment will depend on your age, your surgical pathology, and your doctor. I discussed proton rads but my RO didn't believe they offer any particular benefit for breast cancer treatment; your RO may feel differently.
As for the BMX, I also wanted both removed but my doctor(s) advised me to just have the single mastectomy so that there was a smaller chance of complications and I could get on with radiation. I believe that is Standard of Care for IBC. I was disappointed at first but after learning about other things (greater chance of lymphedema, "iron bra" syndrome, etc.) I've decided that I likely won't have the healthy side removed unless a problem develops. I am almost more terrified of lymphedema than cancer.
And speaking of lymphedema, I had a plastic surgeon perform a lympho-venous bypass microsurgery (LVA) at the same time I had the mastectomy. I have no idea how effective that will be since it is a relatively new procedure (M.D.Anderson had only been doing them in conjunction with mastectomy for about 6 months when I had mine.) The technique allows cut lymph channels to be sutured to blood vessels so that the lymph has a place to go and doesn't "back up" in the limb. The plastic surgeon uses the same opening that the breast surgeon used for the mastectomy, and usually closes the wound.
You don't mention reconstruction, but if you plan to go flat be sure the surgeon understands "aesthetic flat closure" and doesn't leave a bunch of loose skin and "dog ears". You want a smooth and nice looking scar.
Sorry to throw all this at you, but there are a lot of things to consider and it seems like the more we know, the better equipped we are to make treatment decisions. I hope I haven't added to the confusion. Please ask all the questions you need to!
0 -
Hi sbelizabeth and LW
thanks so much for your responses! That does make sense to do (or in this case not do) whatever necessary to minimize potential delays in radiation. After my dx I made up my mind fairly quickly that I want a bilateral mastectomy, I’m just not sure about whether or not I want reconstruction later on. I feel like I am ok with just going flat. Then again right now I’m more focused on just trying to survive this so trying to decide right now whether or not I want to look a certain way in the future just seems… so… trivial at the moment. I’m sure we will go over all of this at my appointment next week. My list of questions for my docs gets longer each day. The LVA procedure fascinates me and sounds very promising! I go to Hopkins and while I know they have PS that perform them I don’t know if it’s an option for me to have prophylactically… another question added to my list 
Still wondering about twice a day radiation and if I should be pushing for that. I’m 36 if that makes a difference?? If anyone has any more info on that I would greatly appreciate it!
LW - good luck at your follow up this week, I’m thinking about you!!
Thanks again ladies
0 -
Preciousbecky, I could see the benefit of that only for the fact that you would be done in half the number of days. That would certainly be an incentive. I would definitely ask your docs about it and what they think. If they allowed for it, you may want to baby your skin even more or do the Mediplex (I may have screwed up the name) as well to help the skin. Like I say, the main benefit I see is a shorter time going to a hospital every day and done the treatment sooner.
0 -
Becky--here's some information you can look over; it's a summary of the MD Anderson IBC Standand of Care documentation. It covers all facets of treatment including radiation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC59290...
Here's the radiation information summary chart from that document:
And this...
"Although multiple approaches may be feasible, most experts agreed that minimal recommendations are chest wall boost to 60 Gy, targeting of all undissected upfront gross nodal disease, and use of bolus to obtain an adequate skin dose. Further escalation to 66 Gy twice per day, improved locoregional control for patients younger than 45 years who had positive margins and poor response to chemotherapy 46, 47. On the basis of this evidence, treatment in patients with a lack of response and who are relatively young may be further personalized and is standard at MDA."
So it sounds like if a patient is 45 or younger and had positive margins after surgery along with poor response to chemo, they will have twice-a-day radiation or a "personalized" radiation schedule, at least at MD Anderson.
________________________
I had my first 3-month followup with my MO today and it went very well. Except for some pesky elevated blood pressure I'm doing fine. Hopefully I can finally begin to look forward to some "new" normalcy in my life.
I asked Dr. Ueno about seeing a LE PT to learn MLD in case I need it. He said that would be no problem and it's good to be pro-active with self care. So I'll be setting up an appointment with a LE specialist in PT soon.
I hope everyone is doing well!
0 -
Hi ladies! Thanks so much for the feedback and recommendations! Now that I know a little more about radiation dosing/frequencies and what it all entails I feel better about discussing options with my RO.
LW- I'm so happy your appointment went well! Here's to nothing but good checkups moving forward
I just had my first AC (+pembro) this morning and so far, so good. Came home and took a little nap (couldn't sleep last night), otherwise I feel fine. My doc did end up giving me the Neulasta, so I got the Claritin on board based on your recs. We'll see how these next few days go!!!
Take care everyone
0 -
Good job on the first AC Becky, you’re a trooper!
LW, nice going on the 3month MO check in! I’m the opposite of you, low BP. Lymphatic massage by the physical therapist feels heavenly. I like it so much. I’m going to PT once a week sometimes twice, but PT said today that I might be done by April & I can manage myself after that. I got released by the radiologist after the final follow up. He said my skin looks great & everything went smoothly. If I can get released by the MO I would be so happy.
0 -
Woohoo!! Glad you're done with the first AC, Becky! You'll be done with it before you know it.
Today is the anniversary of my FIRST chemo treatment a year ago... what a terrified sad sack I was. Just a puddle of goo, basically. So glad I had a great bunch of understanding people here to help me along.
Hey MC! How's the Xeloda going? I need to check on you and Serendipity. I enjoyed my session with the PT today; she's a peach. I learned that my own clumsy attempts at MLD via YouTube videos were much too fast with too much pressure. Can you tell me which OTC sleeve(s) you bought? The LE PT said I could get a Mediven Harmony to have in case I fly or do any strenous exercising. I'm pretty much at a loss with the whole sleeve thing, and they are so expensive I don't want to order a dud.
Hope everyone is doing great!
0 -
LW422, when I went for my first lymphedema therapy session I was amazed at the light touch required. I was thinking "massage" like what I was used to, when the massage therapist digs into your muscles. The LE therapist said the lymphatic channels are right below the surface of the skin so light pressure is all that's required.
When I wore a sleeve my insurance paid for them. I liked LympheDiva sleeves. They're very pretty.
0 -
Hey SBE! I agree, I was surprised at the MLD "light touch." I also have a hard time slowing down my movements and not sliding my fingers on my skin... obviously I need lots of practice! My doctor and the LE PT were both kind of iffy on whether I should wear a sleeve at all "yet." They agreed that I should have one for flying or long car trips, so I ordered a Mediven Harmony and one other brand from Amazon using the measurements from the therapist. So I will try those and attempt to learn how to put one on!!
My insurance doesn't cover sleeves so I'm on my own. I was particularly shocked by the cost of gloves... YIKES.
I had a discussion with my surgeon yesterday about lymphedema. Since I had 32 lymph nodes removed I probably can't totally escape LE, but he is optimistic that it will be mild and I will hopefully be able to control it. Most of the IBC patients at MDA are having the bypass now as part of their mastectomy surgery, due to the SOC ALND. We always get the short straw.
0 -
The bypass surgery wasn't available when I had a mastectomy, unfortunately. It sounds like a wonderful breakthrough to avoid problems. I wore a sleeve for, maybe, six months, and then decided that most of my lymphedema was in the skin of my chest, not my arm. When I had DIEP reconstruction my LE issues resolved. I sometimes get a little bump right above my fitbit band, but it's no big deal.
To put on a sleeve, my therapist had me buy some Playtex dishwashing gloves. After you get the sleeve on, put on one of the Playtex gloves and smooth your hand up and down the sleeve. It helps distribute the material evenly.
Yeah, IBC comes with a big selection of crapalactic features. If I had been consulted before it landed on my doorstep I would have said no thanks.
0 -
Thanks for the tip; I'll be sure to get some dishwashing gloves. I ordered one of those "Ezy-As" contraptions for compression garments; I hope it will work as well as the Youtube videos make it appear. I have a feeling I'm going to need lots of help putting the sleeves on. I have so many sensory issues with tight or binding or hot, uncomfortable things... I just get beside myself and have what my grandma would call "a damn fit."
" /> (I take after grannie.) I'm glad that there are some strides being made in the prevention/treatment of LE; it's such a devastating thing for so many people. My doctor has no idea what my actual outcome will be since they just don't know how radiation and other treatments affect the LVA. There's just not enough historical data yet, and in fact many insurance companies still consider the procedure experimental and won't cover it.
If this past year has taught me anything, it's that I needed to learn to take things as they come, because I certainly can't keep them from coming! Where'd my mundane life go???
0 -
Hi LW, Mediven sleeve should be just fine, you probably don’t need a glove. I hardly wear mine and prefer just a sleeve without a gauntlet attached. I have Juzo sleeve 20-30 mm. Solidea sleeves are more comfy & less tight. It’s a good idea to have one for flying or long car rides or heavy excercise. It’s very interesting to me that different hospitals have different recommendations about the sleeve wearing. In Europe & Asia you just pick one up like meds on your way out. It’s a pain in the US to get one especially with insurance. Also have the PT measure your arms so that you have a base to compare against if they haven’t already. Mine is back to pre radiation levels and holding steady. When I compare my arms side by side I can usually see a difference in sizing.
On another note, anyone here doing any travels by plane? I’m hesitant - afraid tocatch covid since wbc are low but getting pressure from family
Take care everyone!
0 -
Hey MC. I have ordered the Mediven sleeve and one other brand from Amazon to try. At least I can return those without a hassle if they don't work. My arms were measured (baseline) last August before surgery and they measure at each visit. They had some sleeves at MD Anderson but the PT told me since my insurance doesn't cover them I'd find them significantly cheaper online. So she told me what size to order.
Hope you're doing well with treatment, and thanks for the info!
0 -
Mamacure, I have traveled from Colorado to Virginia a few times during the pandemic to see grandkids. I feel less safe in the airport itself than in the actual airplane. Inside the aircraft, masks are no-nonsense, don't-give-us-any crap, REQUIRED. In the airport it's another story; people wear or don't wear or incorrectly wear masks and they sure don't maintain 6 feet distance.
I've been triple vaxed and caught Omicron last month, so I'm feeling bulletproof for a few weeks. Still, when I fly again I'll be wearing an N-95 mask the whole time between here and there. These masks are very effective at blocking out the bad guys. I gave vaccinations all last winter wearing an N-95 mask, and even before I could get vaccinated, I caught nothing. Not even a cold.
Still, it's your body, your immunity, and your choice. If you don't want to take the risk, don't take it.
0 -
Just wanted to stop by and say hello to everyone!
0 -
Hi all,
Fairly new to the boards and just wanted to check in.
Quick recap:
41, single mom, diagnosed on 1/24. For now, it looks like I'm 2B and it has spread to a lymph node on my left side (the lump is in my left breast as well). I just had a muga scan and a port placed today (did not enjoy that experience in the slightest) and my first chemo session (AC) starts Thursday. I'm one of those hard to stick iv patients so the experience of 3 or 4 attempts today to find a vein during the port placement was not very fun. My hand is still sore from the last placement. The port itself and the incisions are all still numb. My provider ended up giving me the wrong at home instructions for care, so I've had to google what to do (they did slightly go over a few of these things at the hospital). They sealed the incisions with derma bond but did not put a bandage over either of them (I didn't realize this until I went home and looked at it in the mirror. Hoping this won't be a problem in terms of infection. I'm debating taking pain pills now so I don't feel anything when the numbness wears off (they prescribed me hydrocodone) but I'm reading it may cause constipation which I know is already an issue during Chemo and I'm not sure it's worth the risk.
I'm nervous about starting chemo, but I'm following the AC thread so a lot of my questions were answered there. I think I'll also leave a post in the January 2022 chemo thread since there doesn't seem to be one for this month.
Anywho, I'm glad so many of you have made it through the chemo and are on other phases of treatment (and in some cases done with them all). Sending positive thoughts for all us.0 -
Hey there, Blue! Nice to "see" you and hope all is well.
Hello HartnSole--nice to meet you but sorry you have been diagnosed. You have landed at one of the best places on the internet for support as you travel through this uncharted territory that NONE of us wanted to be in. Is your diagnosis also IBC (Inflammatory)? Sorry they didn't give you better instructions for the port. Just keep an eye on it and keep it dry for a day or two. If there are butterfly type bandaid things (I can't remember what those are called), don't pull them off... they should stay until they finally fall off in a week or so. You will be glad you have the port when chemo starts.
My best wishes to you, and good luck with the chemo. I'll check on you in the January chemo thread to see how you're doing!! Take care and I'm sending cyber hugs.
0 -
There was no bandage at all. Just evidence that they sealed with dermabond glue.
I just checked again and I'm IDC. I suppose I'm in the wrong thread. Still getting used to all of the acronyms.
0 -
So odd that there was no bandage! Hopefully it will be fine; seems like my port wound healed fairly quickly.
No biggie about the "wrong" thread. We were all newbies at one time and all the acronyms can be overwhelming. We all wish you the best, no matter what the diagnosis! My Dx was a "combo" of IBC/IDC.
0 -
Hi everyone, hope you’re all feeling well!
I never updated after my first AC infusion and already had my 2nd one today! I felt fine after the first, except I caught a head cold from my daughter right around the same time, so I was mostly just dealing with those symptoms. No nausea, never had any bone pain from the Neulasta, my energy level was pretty normal… I was actually really surprised and relieved! But then day 7 I started with chills at night. Took my temp first thing in the morning and it was up to 101.5
off to the ER I went. My ANC was 30, WBC 0.2!! They admitted me, ran every test to find a cause for the fever, and started prophylactic antibiotics. My viral panel came back positive for coronavirus (the “regular” one, not covid-19!) so officially “just” a dang head cold! I was able to go home after a couple days once they confirmed nothing else was going on and my ANC at discharge was already over 500. One week later it was up to 4800! So I had AC #2 this morning and so far feeling ok, just a little tired (twins are teething and not sleeping that great!) and mild headache (probably from being tired!) but otherwise ok. Trying my best to avoid picking up any more germs, but it’s quite difficult when you have 4 kiddos and your house is a petri dish lol.
Anyways, half way done with AC!!!
Hope you all are feeling good!! I’m in the DC area and looking forward to seeing the cherry blossoms soon. Daffodils should start blooming any day. And we get to move the clocks forward soon! I love spring
Take care ladies!
0 -
Hey there, Becky! I'm so glad to hear you sounding upbeat; I know you must be tired, having to deal with 4 little ones during treatment. Glad the ER trip turned out to be nothing too serious and that you're doing better. Half done with AC!!!! WOOHOO!
I've been having a pity party for the past couple of days. Not sure what this is all about but the smallest thing has me crying my eyes out. Hope I can pull it together soon. We're having some spring-like weather in Houston so I sat out in the sunshine for a while this afternoon.
Hey to everyone in the IBC Lounge... hope you all are doing well.
0 -
Hey LW! I’m sorry you’ve been feeling low lately. You’ve gone through so much over the past year. Like A LOT. And it was grueling at times. I know I tend to bottle up stress, emotions and all that during tough times and it all catches up to me later on. I hope you start feeling better soon. Hugs your way
0 -
Hi everyone; hope all are well. This new "improved" forum interface is so annoying I haven't been around much and I hope they get it sorted out soon.
Becky--thanks for the kind words. How's treatment going? I hope you're still doing OK with the AC, bless you.
Everyone check in when you get time; let us know how you are.
0 -
I am finding the load times and error responses from BCO is better than it was plus the font was made a bit bigger. There is a ways to go to have it be as responsive as the other version and hope more colour is added and the problem with avatars not showing up is resolved soon. I know they are working on it and I will try to be patient.
I am doing fine as usual, hope everyone else is doing well too. My treatment is keeping me stable, see my onc every 3 months or so. Echo appointments were moved from 3 to 6 months out since my heart is not having an issue with my Herceptin and never has after 7 years almost on the stuff.
LW, I am sorry I missed your post about feeling down. Don't call it a pity party. Tears can be a great stress reliever and should not suppressed unless it is causing you to feel super depressive all the time. You have been through a lot. Pandemic did not help and coverage of the Ukraine/Russia would make anyone cry as well. I stay away from that except when my news comes on. If you go back to normal, the stress relief of tears is just fine.
0 -
hello & happy spring everyone! Glad to see you all back on here. Glad to hear you are doing well Mara. LW I’m sorry you have been feeling down. I hope you feel better soon. How is your hair? How long is it? I am grateful to have some so that I don’t look too sickly but xeloda has stopped the growth. I put on earrings for the first time since starting chemo. It didn’t close up! Safely flew to sunny California & back. The airport & plane was packed but I kept my KN95 mask on except when I had to take xeloda ugh. The plane smelled terrible when I lowered my mask, yuck my heightened sense of smell. I am doing good on xeloda so far half way thru cycle 3. Fingers & toes crossed. I hope you all enjoy each day & not worry too much….. I try to stop my negative self talk or slapping my forehead at times. Lol. Hang in there everyone! Keep us posted.
0 -
Hey Mara. So glad to hear that you're doing well, and doubly glad that your treatment is keeping you stable! Thanks for always being so kind. I feel kind of silly, blubbering over things when other people have it so much worse than me. But you're right... sometimes a good cry is a good thing.
Hey Mamacure! I'm glad you're doing well and the X isn't awful. It's great that you made the trip safely. My hair is about 2" long and totally wild. I can't do anything with it so I just let it stand straight up... Kind of that "Don King" thing. I need to get one of those "wild hair, I don't care" t-shirts.
I was so worried about getting LE but I have finally settled down. I need to stop anticipating the worst and get on with my life. Happy spring!
0 -
LW422, I am glad you are ready to settle back into life without cancer, that is the way it should. As far as lymphadema, I am sure you have been told, avoid needs, IV or blood pressure on the side where you had breast surgery.
I am still doing well except for a reno project above me went wrong when a worker's leg broke through my living room ceiling. Luckily I was not hurt nor anything really damaged except I have an ugly hole in my ceiling, both cats still terrified as well which makes me angry. I did email the city to ask for a building inspector to be sent out, don't want another person above's furniture crashing on my head. Other than that I am doing well, snow should be gone, found it hot last night for a change so it will be nice to get out.
0 -
Hey Mara. Yes, I have all the lymphedema "training" materials and I try to be careful with that arm. Problem is that it's my dominant side and gets used for everything. Anyway, I'm just going to live my life and try to stop worrying in advance. I made the mistake of reading some articles about IBC last night and got so depressed I wanted to cry. I seriously need to get outside in the sunshine! On top of that, a friend was diagnosed denovo Stage 4 BC yesterday and she's reeling. I told her to sign up here but this "upgrade" has everything in such a mess it will probably be frustrating to her.
OMG, I can't believe that worker stepped through your ceiling!! WOW. They must be tearing up the floor up there; I can't imagine how else that could happen. I'm glad you weren't hurt and didn't have anything broken or ruined. You are certainly having a lot of challenges there in that building.
0
