IBC lounge: roll call, support and just a good place to hang out
Comments
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Hi Peter! I hope Nicole and you are doing well. My first radiation appointment is in the history books; it went OK but I did have a verklempt moment when I got on that table and big tears started to fall. Hopefully it will be easier tomorrow!
Hope everyone is doing OK. Mamacure, I'm thinking about you!
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LW422, hope the first radiation went well for you.
Mamacure, healing thoughts for your surgery as well.
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Hi friends need a suggestion. I have been having constant headache for last two weeks or so. I got anxious and went to urgent care and got cat scan done. It came back clear but the headache still is there and I get nausea in the evenings.
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LW and Mamacure- thinking of you both today! Prayers that you move through these next steps swiftly and successfully. ❤️
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Thanks, Mara. So far, so good... but this is just day 2!! I'm trying to figure out how on earth to put lotion on the radiated area and avoid all the "roadmap" of markers on my chest.
Flo--I'm sorry you still have that headache. I am prone to sinus headaches in the fall; something about the high pressure systems of weather. Have you gone to your primary care doc for followup? Hope you feel better soon.
zakheat--thanks so much. We all have to help each other along this rocky path!! How are you feeling these days and what's your next step? (Sorry if you already said; my brain is like swiss cheese these days.)
Mamacure--hope all went perfect for you today and that you are recovering from the surgery. This will be a rough week for you, dealing with drains and your "new" body... but you can do it!! Hugs.
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LW422 hope the radiation area gets better soon. I used saline solution which helped like saline soak. My headaches are still there . The relief is that the ct scan was clear. Have an appointment with the primary on Thursday to check
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LW422, I did not have markers placed on me, I had tatoos put on instead, just a few dots so it was easier for me to moisturize like crazy. Hope you find an easy way to deal with the markers.
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Hi everyone, my surgery went smoothly. They rushed me out the same day so I vomited a lot whenever moving. Pain & drains are manageable so far. Really glad it’s over. The incision is big starting at themiddle of the chest to under arms. Will try to look tonight or tomorrow. Wearing the compression sleeve & glove is not fun. Thank you LW422 & everyone for well wishes!!
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Glad it's over and went well, Mamacure. Take care and let people spoil you!
I can't believe my first week of radiation is almost done. Hope the next 5 will go as quickly!
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Hi mamacure, glad your surgery went smoothly!
Hi LW422, have you felt any side effects yet?
Nicole went through her simulation toda and got a few dots tattooed. Don’t have radiation schedule yet.
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Hi Peter. Nope, I haven't had any side effects yet. My RO said it might be week 2 or 3 before I notice any changes. I'm praying that they will be MILD, whatever they are!! I'm still having a lot of discomfort under my arm from the node dissection and I wish that would go away. I'm afraid it's going to take a few months which is depressing. I hope Nicole is feeling well these days.
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Hi everyone,
haven't posted in a while but am reading other post and obtaining munch needed information and encouragement ! All treatment was completed 1st of July due to cardiac side effects. Herceptin/Perjeta stopped 3 treatments early. I was initially very worried about ending treatment early until I read others posts here and other blogs. I am feeling much better now. I have started on cardiac meds and will be repeating echo and EKG this week. symptoms have resolved and am currently doing the 35 mile breast cancer challenge! feeling great! following up every 3 months with surgical and medical oncology as well as cardio-oncology. starting to relax a little and managing to forget about what I've just gone through for short periods of time.
I am praying for each of you during this trial. My focus now is on all my family members and their needs which are greater than mine! Leaving the future in God's hands!
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Had post-op with the surgeon today. She is amazing, flat closure, clean, looks like no need for plastic surgeon. Pathology is not what I had wished for…………..all that nasty chemo, the whole kitchen sink of awfulness (T, carbo, AC + keytruda) barely shrunk the tumors. But surgeon got clear margins 2mm, thankful for that. 8 lymph nodes were taken ( less than I expected). 5/8 had cancer cells ugh. I was hoping zero or max 1……. Radiation will be helpful. I’m still on keytruda every 3 weeks, so afraid they might throw more chemo at me. At least the cancer is gone from my body. Hope everyone isdoing well, hope radiation is going well. Take care.
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Denise--so great that you are done with active treatment. I hope all your cardiac issues resolve themselves and things get back to normal for you. Take care and let us know how it's going.
Mamacure--sorry that the tumors didn't react well to chemo and that you had positive nodes, but what a relief to have all that removed and with positive margins!! I'm glad the surgical scar looks good; how are you feeling? Did the surgeon take 2 levels of lymph nodes? My SO told me that due to each individual's anatomy those 2 levels might contain 6 nodes or 40... everyone is different. I find that odd but I suppose she knows what she's talking about. (I had 2 levels removed and it was 32 nodes...ugh. I don't know if my armpit will ever be the same again.
Take good care of yourself and let us know what's next. I've got 2 more days of rads to complete 2 weeks, so yay. Only 4 more weeks after that, haha. It is a hassle traveling to treatment every freakin' day but so far my skin is holding up and I'm so grateful for that.
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LW422 glad your skin is holding, may that continue for you.
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Thank you, Mara! How are you doing these days?
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I am doing well, thank you for asking. Walking mostly.
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LW422, you are charging through radiation! Way to go. I hope it will be easy on you. Yes, my surgeon planned on 2 levels to remove and auxiliary dissection. Not sure why 8 but she used the dye injection mapping. I will be on Xeloda after radiation. I could delay radiation and go on Xeloda first but I think getting radiation out of the way and zapping it will be best.
Good to see this thread staying active. Thanks everyone.0 -
TravelText--If you're reading... my RO added Mepitel sheets to my radiation Rx today and I thought of you. She didn't seem to think it necessary for anywhere except my mid-chest area where I'm getting "55 Gray" (whatever that means). She said the other areas are getting "50 Gray" and the skin should hold up. Hmmm. Anyway, I've got a Mepitel sheet on and hopefully it will work well.
Mamacure--bless your heart, how are you feeling with your surgery recovery? Have you had any drains out yet? I'm still having some tightness and nerve weirdness, even 7 weeks out. I think you're making the right decision to have rads before Xeloda; I'd do the same to get any random cells zapped! I'm almost done with 2 WEEKS of rads... woohoo!
Mara--I'm glad you're doing well. Hugs.
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LW, thanks for the feedback on Mepitel. I’ve been banging on about how good it was for me for years and you’re the first person to give me feedback. Good luck with the final doses, you’re on the home stretch. WooHoo.
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LW422, that’s a brilliant tip on putting Mepitel on the highest dose area. I was thinking how I was going to cover underarms, clavicle, etc. you are lucky they put it on for you! I was told to buy it on Amazon. I got the last drain out today & feeling free. I’m healing well but underarm feels sore, numb, tingly, just weird.
Thanks for being the Mepitel advocate Traveltext! I definitely plan on using it too.
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Mamacure--oh, I know how good it feels to have those drains out! Glad things are moving along for you. That armpit weirdness seems to be standard for lymph node surgery and it can be quite irritating. I still have that, plus some numbness on the back of my upper arm. Are you doing stretches yet?
I don't know how you'd deal with Mepitel under the arm; it will be difficult to keep on I imagine. The area I have is only about 2" x 4" or so and is mostly flat due to the mastectomy. The Mepitel still gets "wrinkly" when I move my arms. I'm glad I didn't have to buy it or apply it myself, though.
TravelText -- I have read good things about results using the Mepitel (including a clinical trial) and I don't know why it isn't more widely recommended. I'll let you know how it goes.
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Hi mamacure, sorry to hear the tumour did not shrink as much as you hoped. Clear margin is good though! Radiation should hopefully take care of the rest
Hope you are recovering well from the surgery!
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Hey Peter. How are Michelle and you? Has she started radiation treatments? I'm almost done with week 3 and so far, so good. Take care.
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Hi LW422, glad to hear your radiation treatment is going well and no side effects! You are almost at the home stretch!
Nicole is doing well and will start her radiation on Friday. Not sure why they scheduled her first session on a Friday, at 4:30pm nonetheless! Traffic going home will be terrible, so we’ll head over to my dad’s for a visit/dinner with family. Nicole’s hair is coming back. Hair was a peach fuzz a few weeks ago and now growing in. Big difference for sure. I joked with her that she might have a mullet soon.
As for Michelle, don’t tell Nicole about Michelle (just kidding, there is no Michelle).
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Haha!!! So sorry, Peter!!! I have no idea where "Michelle" came from... I'll just blame it on chemo brain and look wide-eyed.
" /> My apologies to Nicole and to you!! I hope her radiation goes well and she doesn't have any uncomfortable SEs. I was able to get my radiation treatments scheduled mid-day so that we don't have to deal with rush hour in Houston. Hopefully Nicole's schedule can be worked out for a more convenient time. How cool that her hair is coming back; mine is too! I have about 1/2" of fluff up there and it feels good to not see shiny scalp anymore.
Take care and let me know how things go with rads.
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Thanks Peter, I'm recovering well tho my under arm area is warm & tingly. I also have tiny sideburns now LOL
LW, nice going with radiation! Hope it goes fast!
I'm getting the Pfizer booster tomorrow (got J&J before).
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LW422, glad you were able to schedule a more set time for rads. My place did not do that so it was different everyday.
I wish my country was giving vaccine boosters but we are not doing that yet. I keep sending emails to my prime minister's office and my premier as well to get this underway.
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It is dark and rainy so not going out until at least the thunderstorm risk is lowered.
I feel like a genius to my self because I am cleaning a couple of dustbuster filters and realized I could use my portable washers. I have 4 mesh lint catchers in the machine and if I just put water in and let it cycle about 30 seconds, it cleans the dustbuster filter clean. Of course I take the worst of the lint off first. After that I place them on my boot dryer as it is only warm air blowing and does not burn anything. Will make cleaning the filters for the dustbuster much easier in the future.
Edited to add, I just had to wipe down the washer with vinegar and doing and additional hot water and vinegar rinse as well.
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Hi LW422, no worries, chemo brain is a real thing (according to Nicole). I can't comment on chemo brain and I hope I won't ever have to experience it. Helping Nicole through her journey gives me a new prespective the amount of courage all of you have! I told Nicole she will have probably 1/2 inch by December, hopefully her hair will grow in fast (but will probably still take 2+ years or so to get back to her normal shoulder length).
We discussed with the RO on mepitel dressing and her RO does not think it will help, perhaps because she is only getting 15 sessions and bolus every other day. Hopefully Nicole won't get bad side effects like she did with chemo (hand & foot syndrome from AC, neuropathy from Taxol, very bad bone pain from Neulasta shot)
Hi mamacure, good to hear you are recovering well! it's exciting to see the hair growth! I have been taking picture of Nicole's hair every other day. We may document the hair growth with pictures, would be cool to see the progress.
Hi Mara, vaccine boosters are available if you need or think you need one. Talk to your family doctor or your MO and they can write you a note for you to get the booster. Nicole's MO & SO offered to write a doctor's note for the booster.
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