IBC lounge: roll call, support and just a good place to hang out
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Way to help science LW! I get those zingers once in awhile too. My naughty boob should have been blasted as well. Lol.
Mara, so happy to hear of your good scans!Becky I’m so sorry to hear about your shocking pathology report. You know what? Mine was very similar with a high # of positive nodes & residual macro & micro cancer cells left. I was shocked & devastated. Especially since I had carbo & keytruda on top of taxol & AC. Ugh. My chemo brain can’t remember the exact # anymore. However my wonderful radiologist & team blasted those cells without much side effects so far. Also I was put on Xeloda for 8 cycles (6 months). It sucked to continue chemo but at least it was by pills. It has been tolerable & not as bad as the infusion chemo. I have one more cycle left then I’m done! No scans or anything! I was dreading scans because the liquids to drink are a nightmare for me. Just check ups every 3 months & pray it does notcome back. Looking back, my TNC was somewhat resistant to chemo I think. There’s options, you can do it! Stay positive & keep fighting. I’m in your pocket with Mara & others too.
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mamacure, glad the oral chemo has been easier and you look forward to finishing it up. No harm and making sure you don't go stage !V, that is for certain.
Yes, scans so far are good. Have another CT scan somewhere soon and an MRI which is booked for August. I do not drink the oral contrast I used to for the CT. That made me incontinent for bowel movements and I cannot put up with that. I do have the contrast injected and thus far, results are similar. I do have trouble with nausea but when I am given it, I just hold my breath until it is in and breathe slowly. Like that better than the nausea meds.
I am planning to tackle lack of physical activity (walking) by instituting 10000 steps daily for myself, mostly indoors with a couple of days of walking at the mall or at my grocery store as well. I feel no need to walk the miles I used to outside as I am a tripping hazard at times. The indoor steps will be done marching for the most part as lifting my feet helps to avoid the falls. I get the whole day and can choose to go song by sone. I am not busy so easy for me to bang off a couple of songs, get some water and get back to it. Need to lose some weight and that should help a bit.
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Oh thanks Mara! I will ask about the contrast dye injection, I think I had a blue one before for bone scans. I much prefer that to drinking the nasty liquid. Indoor marching is a good idea. I sometimes walk around my kitchen island & do 10 squats. I need to do more stretching too. It rains all the time here so indoor work outs are great. Whenever I bend down & get up, I feel very dizzy. My stamina is down for sure. I wish you continued stable scans Mara. Take care.
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Hi everyone! Sorry for not posting in a while, that path report really knocked me for a loop and I’m honestly still pretty upset about it. I appreciate everyone’s thoughts and support. I actually just had my first radiation treatment this morning. I go to Hopkins and am doing proton therapy with a plan for 33 treatments (I believe the dose is 66 gray?) Anyways, hopefully that’ll zap any remaining cells locally. My incision looks great minus a little puffiness at the end under my arm, but I think it’s worsened by the fact that it’s right where the seam of my bras are. My arm is doing so much better as far as strength, range of motion and nerve pain/numbness. It gets better everyday and my physical therapist is incredible. No signs of lymphedema. I’m still going to need more systemic treatment once rads is done so contemplating Xeloda vs clinical trial route. Will keep ya’ll posted on how things go!
Take care everyone!
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So glad to hear from you, Becky! Radiation is a drag... mostly because of all the daily trips to the facility. But it will go by fast and soon you'll be done with it! I'm happy that you are getting better range of motion and reduced pain/numbness. Let us know how it goes.
Mamacure--how's the X going... are you done yet?
I'm doing pretty well these days. I can't believe how fast this year is going by! Last year I was dealing with AC chemo and doing a lot of whining. I hope all the IBCers are doing great and enjoying life. Check in when you are able and let us know how it's going.
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Wow Becky, 33 is a definite marathon. I had 25 as I remember on the breast wall post chemo. Glad range of motion is returning for you.
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Hello everyone! I am officially done with Xeloda as of last night!! Woo hoo yippee! My supportive friend surprised me with a strawberry cake & flowers!! X was much more tolerable than expected with very mild nausea. I’ll be praying & eating cancer fighting foods now on. Thanks everyone!
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Congratulations mamacure. All the best for the future.
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Congratulations on finishing your Xeloda treatment and eat all the foods you can find.
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Yippee! Good job on the X, Mamacure! I'm thrilled for you; enjoy the cake.
TravelText--I see you got the signature stuff fixed at long last. I like the new avatar, too! EDIT: Oh, nevermind. I see what you did there.
Hey Mara. Hope things are going well for you. I need to check the living room and see what you've been up to.
Becky--how are you?? Check in when you can.
I hope all the IBCers are doing well.
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LW, I am still stable and generally feeling well. Not too much to report at the moment otherwise but not too much is better than too much going on at the same time
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Hi friends hope you are all doing well. A big hello from me:
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Mara--so glad to hear that you're stable. Hope things are going well.
Hello Flo80. Nice to "see" you around again. How are you doing these days? Take care.
Becky--check in when you can and let us know how treatment is going. I've been thinking about you. Hugs!
Mamacure--so glad you're done with X!! I hope you're feeling much better. Good job on slogging through that treatment swamp but now you're out in the sunshine!
I hope all the IBCers are doing well. Check in when you can.
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Hi everyone! Congrats on finishing Xeloda mamacure!! Glad to hear it wasn’t too hard on you! I’m still trying to decide if I should go with Xeloda or a clinical trial route after rads. 14 down, 19 to go! My skins a little pink and slightly itchy, but not real bothersome at this point. My team recommended calendula cream so that’s what I’ve been using twice a day. Feeling pretty good. Still getting pembro every 3 weeks. My wbc and platelets have been trending down slightly since my last chemo (which was almost 3 months ago!), not sure what that’s about, but MO says most likely still from chemo…? I’ve always been pretty fit (5’5” 120lb) but I’m trying to eat better (less ice cream in bed!) and go for a brisk 2 mile walk every night after I put the kiddos dow. Otherwise just enjoying the summer with the fam! Hope everyone’s doing well!!! ~Hugs~
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Thank you so much everyone. I have been thinking of you all. I am doing okay but started getting this weird lower abdomen pelvic bone pain. The X-ray was good but they said they will do ultrasound for the abdomen. No need of ct:
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Thank you everyone! So happy to hear from all of you! Best of luck Becky on proton therapy, hope it goes super fast. Please continue to keep in touch.
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Hello everyone; I hope you're all doing well and staying cool this summer. It has been SO HOT in Texas. I'm doing OK but I'm afraid I'm getting some LE in my right side and arm. That really bums me out but it is what it is. I need to see a PT and learn how to "wrap" because I know I will never wear those stupid sleeves and compression garments. Next month (August 23) will be a year since my mastectomy and honestly I haven't been "comfortable in my body" since then. It's always something... tightness, stinging, nerve zaps and now some swelling. Ugh.
Becky, how's the radiation going? I hope you're not having a bad time of it. Hugs.
Mara, how are you and what's new with your apartment situation?
Mamacure, are you beginning to feel better after treatment ended? I hope so!
Flo--did you have the US on your abdomen? I hope the pain has improved and you are feeling better.
Still hoping some of the IBCers will check in and let us know how you are. (Lori, Blue, TT, SBE, NatureYogi, Peter and Nicole, Saulius, Denise, Val, EBBA and everyone I missed... check in and give us an update!)
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lw422, thanks for calling us up. Ive read every post here since 2015 and love it that there are new people here interacting and helping each other. I'm fine, still NED for breast and prostate cancers. I'm very active on Twitter as @malefitness and I write about this disease a lot, particularly as it relates to men. I'm also on the board of the Male Breast Cancer Global Alliance. Lori, who lives in cold, cold Wyoming, is doing well, her latest chemo turned out to be effective after several treatments weren't. She's an inspiration for all IBCers. Best wishes to all here.
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Hello, sisters and brother! All is well on my side of the world. Swimming, playing with the grands, and we're going to Alaska to fish for salmon in a couple of weeks. Thanks for pulling all of us in, lw422. The next blip on my cancer radar is the 10-year anniversary of taking femara, the aromatase inhibitor I started in July 2012. I'm scared to stop but not sure they'll let me continue.
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TT--thanks for checking in and for giving the update on Lori. So glad to hear from some of the long-term survivors which gives us so much hope. Take care.
SBE--wow, Alaska! Have a great time. Kind of scary about ending Femara, but just consider the TN folks (like me!) who got no AIs or nuthin' after treatment. Pretty much a "see ya" from the MO, with 3 month checkups. Talk about scary!! Thanks for checking in and update us on the trip.
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LW, nothing really new for me. My last CT scan shows as stable from the neck down. No evidence of cancer since 2015 from the neck down. MRI scan of the brain happening Sept 1st. Healthwise, I am healthy and strong as I can be and feel lucky.
As far as the housing, I have not been asked to move and there are new property managers for the building that seem nice, if I can stay that would be good as I stretch my money and make money playing little mobile games and do surveys. Life is quiet but really not bad, hope everyone else is well, in pockets for anyone struggling with SE or just feeling anxious about anything.
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Good news Mara. Six years stable from the neck down must be so good to hear. As is healthy and strong.
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TT, you are right, stable is good to hear, never gets old for me. I am so glad for you that the breast cancer has not reared its ugly head and that you have got through the prostate cancer as well. May it stay the same for you as well.
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Hello everyone! I am hanging on, sad from having to move out of state but getting better. Aches & pain here & there back ache on the affected side maybe due to imbalance with missing boob. Sometimes feel like walking on a tight rope but trying not to worry & enjoy each day. Heard from my onc there’s a new drug for TNC with low .. (dx by fish) so that is hopeful but pray we won’t need that. Sorry to hear LW about your arm. Mine seem to stabilized for now but hate wearing dang sleeves 24/7. I take a break for a couple of hours. Massaging and excercising seem to help. Pretend you are swimming with your arms do about 15-20 when u remember to. I think u can keep it at bay. Thanks everyone so great to hear from everyone. Take care.
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hi everyone. Been a while since I posted. Read back a few months and so nice to see familiar faces ( so to speak) ! Am now 2 years post- dx. With NED . Have finally decided to have prophylactic MX. 9/1. Without reconstruction. It’s taken me awhile to figure out what’s best for me.. so very happy I delayed this part because I would have chose differently in the initial world wind of treatment.
Think of all of you often. Hoping for the best for all. God bless
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Glad you have found what will work best regarding surgery and whether to reconstruct your breasts or not.
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Mara--what good news it is to hear "stable." Glad you're doing OK these days.
Mamacure--I didn't realize you were moving! Wow, that must be exhausting so soon after treatment. Where did you move to? I agree with you about the missing boob causing posture issues. I notice that my boobless right side shoulder seems higher than my left shoulder so I have to consciously "adjust" when I notice it. I still don't have a compression sleeve; I'm just being ornery but I know I will be non-compliant with that stuff. I'm just seriously exhausted from dealing with all the shit-sandwich we were handed from breast cancer and I resent it all so damn much. I want to yell at the surgeon... "LOOK WHAT YOU DID!" but I suppose that wouldn't help anything.
Denise--good luck with the surgery; I hope it goes well and you have an easy recovery.
Yeah, I'm in the "pissed off about all the cancer bullshit" mood today. I need to get back to being grateful that I'm alive but right now I'm just mad. Hope everyone's doing OK.
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LW, like you, if I don't put my silicone breast form into my bras, I feel out of alignment also. I have also gained weight causing left breast to be bigger than the right so I got padding to add to the right breastform. I feel more balanced out now. I have had the silicone breast form since 2015. It was expensive but seems pretty durable, only a bit of a tear which I sewed and it is not liquid nor meeting my skin so am not too concerned.
I have not dealt with lymphedema to this point but the possibility can happen anytime. Anytime someone goes for my right arm for blood pressure or blood draw, I tell them no. I have had silly people tell me it is OK but I remember the instructions not to use the right arm for anything. Hoping your prophylactic arm behaves.
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Hey Mara. I pretty much never wear a prosthetic; they are too hot and annoying. So I have one "D" cup boob which does unbalance my posture. I probably should psyche myself up for the prophylactic mastectomy to ditch "Louise" but so far I still feel so uncomfortable from the first surgery that I don't want to think about it. So far my LE symptoms are very mild but noticeable to me... I can tell there is a bit of swelling in my fingers and axilla. The axilla swelling gives me the "tight band" feeling under my arm that makes me want to stab something. You are smart to keep well-meaning medical personnel away from your affected arm; you really don't want to tempt fate when it comes to LE.
I'm still struggling with all the fabulous cancer personality disorders... anger, sadness, fear, anxiety, and of course intermittent hysteria. Today is a total ANGER day for some reason, and everything is pissing me off. I need to go take a nap or have a drink, haha.
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lw422, I have always believed myself to be a calm, accommodating, friendly person. And generally, I am. But...when my dad was hospitalized with lung cancer I became a demanding biyatch. When I was recovering from a double knee replacement and the physical therapy scheduler messed up my appointments, I came unglued on her. I was embarrassed by my own behavior and had to apologize. And during those breast cancer days...I had to seriously guard myself. When I was particularly stressed I found myself lashing out, only to have to humble myself and apologize later. If you can dive deep and uncover why you're having an anger day it might help turn it around. Then again...we're all angry at times that this crapalactic disease landed on us. We get it.
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