Starting chemo February 2020
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TX MOm 3, sorry to hear about things at home. Thanks for your update. I've started my hormone therapy which I find makes me feel like I have PMS so far. I'm going to start radiation next week. Thanks for the tips!
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Morrigan- that is a lot going on at once, but it sounds like you're handling it all really well!
Txmom3- sorry to hear about the move/loneliness with covid, but it sounds like ultimately it was a good move for you. Glad to hear rads isn't too bad for you! That's great. What hormone therapy will you be doing? I'm doing zoladex/aromasin. Now that I'm into month 2 of it my body had settled in and I have few noticeable side effects (as of right now).
Dysonsphere- good luck with rads starting next week. I hope you have few side effects!
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dysonsphere - I forgot to mention that I started that routine on my first day of radiation and didn't wait until skin started feeling hot or getting red. I think that also helped significantly. The aquaphor and melagel are vaseline like consistency, so I just slept in old t-shirts that I didn't care about getting greasy. Hope you do well in radiation treatment! Thanks for the info on SE of hormone therapy for you.
Ajminn3 - Thanks for all the encouraging posts. My next follow up with oncologist is end of September and she mentioned zometa as likely hormone therapy. I am looking forward to a short break from doctor visits when I finish radiation!
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I've been doing Aloe 3xday since day 1. I have a few versions, the Fruit of the Earth is one. Someone on Facebook Group recommended Aloe Propolis Creme (got on Amazon). I used it once or twice but, mostly stick with the Fruit of the Earth gel.
I Googled, Vasaline is 100% petroleum jelly and can be used to protection your skin and keep moisture in. Aquaphor is 41% Petroleum, it's other ingredients are stuff that heal the skin, not just protect it.0 -
Actually I just looked up zometa and it is complimentary drug to prevent bone loss from hormone therapy. I am not sure what hormone therapy I will get yet.
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txmom - welcome back. Sorry things at Home have been rough.
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I had a scary moment today, made me realize how traumatic all of this has been. I went in for my quarterly echocardiogram and the testwas taking forever. She kept taking images. Then she said she really wanted to use contrast dye to get better pictures of my ejection fraction, so she needed to put in an IV. The heart wall looked a little cloudy and she just wanted to get the best picture. Of course I went to dark places, thinking my heart was damaged by the Herceptin, and I would have to stop my Her2 treatments, etc.
Thank god my results came back hours later and my heart is pumping better than ever. My onc sent me a note that everything looks great and I can start Kadcyla at the end of the month. I just realized that I’ll have a really hard time ever being ok during tests without going to that anxious place.
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Tell me about it. Today I went for Kadcyla #4 and, when I was in the lab they were talking about having to do an extra vial because the doctor ordered an extra test and I had a moment of panic...why extra test? Something wrong with my last labs? Something wrong with my Echo? What's going on?!! 😫
Turned out to be nothing, they added some routine tests beyond the CBC that they do every few months. It was just this time the Lab Tech made a comment about needing an extra vial0 -
Glad everything turned out okay with you guys. I have been trying to deal with the changes with my breasts the last couple of weeks. I'm not sure why I am so emotional about them. I asked for a reduction and they look exactly like I imagined they would, but for some reason when I look at my new breasts I just want to cry. I miss my natural breasts and it's like they have died and I'm mourning them. I know that sounds strange but that's how it feels. I have bought some bra inserts to enhance my reduced breasts for now. I know I can make them bigger later if I want. It's just at the moment they feel so different.
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Fab4mom- agree 100% about the trauma...I sometimes forget all that I’ve been through in a year with this and then it just hits me at random times. I’m glad your heart cake back ok. Scans, tests, results, and any ache or pain will forever cause me anxiety...
Dysonsphere- it’s such a big physical change. I’ve had similar feelings at times. My biggest struggle with physical change is my hair. I just want my old hair back...I know it’ll get there eventually, but I just don’t like how it is now and I hate how petty I feel for caring about it so much.
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dysonsphere, I miss my natural breasts too. It's not strange. I'm sad they are forever gone and there is no turning back. I'm 3 1/2 weeks post-surgery and the swelling is down and now I'm really disliking these air-filled expanders which are like malleable bubbles under my chest. They are so uncomfortable - I feel like they have corners jabbing me and are all up in my armpits - and I am so sick of wearing a bra all the time. At least now I can sleep on my side for a while, but nighttimes are hard - I desperately miss sleeping on my stomach. I miss my boobs - they were comfortable and soft. I suspect I will dislike these weird lumpy monster boobs even more when I get them filled with saline and expanded next week.
Fab4mom - when weighing mastectomy/lumpectomy, my BS said that with lumpectomy there is more follow-up surveillance/testing/mamograms, etc. and that many women have something like PTSD that shows up every time they have to come in for a test. I'm not looking forward to the waiting for test results ordeal we'll all have to endure in the future, over and over.
Anyone else find their breasts somewhat painful after mastectomy (I mean, after initial pain first two weeks)? It's hard to explain what it feels like because it's not exactly "ouch" pain... I'm fine when sitting/not moving. But as soon as I get up and move around the house I feel a physical discomfort all around them - almost as if my clothes were harsh and rubbing on them. But that doesn't make sense because they are numb to the touch. It is similar to the sensation I have on the underside of the arm on side where they removed lymph node. That skin on my whole underarm is partially numb and whenever I walk it feels like it's being chaffed/rubbing against something rough. Nerve pain or something - but there it makes sense because I have some feeling.
But I feel lucky to have only this discomfort. My one lymph node was clean and I had a pCR, despite still feeling a lump where the tumor was. I am so immensely grateful for this. And because of those two findings, they reversed their initial recommendation that I get radiation due to the 5cm+ suspicious area on my MRI (in addition to 2cm+ tumor) because even tho it's above the 5cm+ mark, they cannot say for sure that the extra area was cancer. I'm still going to go in and meet with a RO to get the stats and make a final decision, but this is another huge relief. I feel more like an end is in sight.
With the end in sight, I'm looking for ways to "pay it forward". My local cancer center is opening back up slowly and I'm hoping to volunteer there or with Immerman's Angels. I suppose there is always Susan Koman org. too - but has anyone seen any other unique organizations like Immerman's Angels?
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I'm sorry for those of you disliking your new breasts. I have a feeling I'll be the same way but I'm hoping to love them.
Question again for those that had the gamma injection before surgery. Is it an injection through the nipple? Do they numb the area? Does it hurt?
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"I feel like they have corners jabbing me and are all up in my armpits -"
I thought it was just me. 😁
I'm going to see my PS after Dads is done and I will bring it to his attention...yo boobs don't belong in pits 😁
"and that many women have something like PTSD that shows up every time they have to come in for a test"
I read an article that said 85% of BC Survivors have PTSD and one of the reasons why there are no annual/routine scans for early stage BC is that the scan anxiety does more damage then it helps
"Question again for those that had the gamma injection before surgery. Is it an injection through the nipple? Do they numb the area? Does it hurt?"
They did numb the area, i didn't feel anything. it was 3 or 4 injections in the nipple area, i honestly couldn't tell you if they went right in the nipple but, they said they would be in that area, i thought it was more in the areola not the nipple itself but, i couldn't see or feel what they did
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ok, glad I'm not the only one with boob in my armpit.
My sister-in-law showed me her implants (bmx 5 years ago) and she doesn't have any in her armpits so it must just be the expanders. She never had nipples tattooed on either - I guess I'll wait and see about doing that, tho I feel like I should take advantage of the numbness to get a tattoo.scatteredenergy - I'm still hoping I will like/accept my eventual new breasts with the final implants in. Right now it's just the expanders and they are not very normal-breast shaped or normal-breast behaving. I will say tho... I started trying on some bathing suit tops and other shirts to see if my boobs (even with funky expanders) looked better in them than my natural breasts did - and yes - they do. So it's not all bad. I just want to FF past the clunky expanders and get to the implants. Post surgery expander breasts remind me a lot of when my breast milk first came in. Lumpy, hard, sore, a bit freaky looking.
the pre-surgery isotope injection was four pokes around the areola. I had originally pictured right into nipple too and that freaked me out, but it's around the nipple. I found the freezing spray very "uncomfortable" (think cold nipple) and the injections were a very short painful pinch like any needle poke. But it's over very quickly. I found the COVID test and my recent eye exam more uncomfortable.
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Thanks ladies. I'm hoping mine is quick and painless lol
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checking in to see how everyone is doing. I finished Radiation yesterday, it wasn't too bad. I did get really red towards the end and, I'm a little sore, especially under my arm (which is really red). Hopefully, it heals quickly (like a normal sunburn).
Other than that just plugging away. Kadcyla and Tamoxifen are both treating me well. No major SEs to complain about.
Scattered Energy - Good luck with surgery! I couldn't find your date but, I thought it was this week.
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I just had H/P infusion 5 last week and just keep trucking along with my OS/AI. I'm not really having many SEs anymore beyond some occasional joint pain. I truly can't complain right now! It's my first week back at work teaching at school since last December. I am so, so exhausted. While I'm happy to see my students in person again, my body is not used to hitting 10,000 steps by 3pm! I know my body will adjust, but if I could I would sleep 12+ hours a night at this point haha. If only my littles at home allowed that...
Morrigan- That's so great your radiation is done and with few side effects! I'd say week 2 post radiation for me is when my skin flaked/peeled and felt relieved. My skin is still a little pink and you can see where the Rads hit, but other than some tightness in that area I feel good.
SE- hope your surgery goes well!!
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Thank you ladies. I'm glad you are both doing well. My surgery is on Tuesday the 22nd.
I had the Covid antibody test and it came back positive so that's good. I have an actual Covid-19 test tomorrow.
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Ladies, how soon after your surgery were you able to drive? I don't like depending on others and my diance can only take two weeks off.
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SE- I was able to drive by 2 weeks post surgery. I’d say my range of looking over my shoulder or big movements was tough, but I could drive just fine
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You can drive once your Drains are out provided you aren't taking pain meds. I was actually driving myself to the drs in a week (8 days) even with the drains in because I hate bugging people for rides even though I had a ton of volunteers.
Just be aware of how your body feels and your arm movements. I had full range of motion so I felt comfortable driving myself to the Dr which was local and not a daily thing
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Thank you ladies. I drove my self everywhere after my tummy tuck lol
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SE - I drove 4 days after my DMX. I had to go to the drive through Covid test because they were sending me back into surgery and I didn’t want to drag my family. I would say looking over my shoulder was a little dicey. They actually didn’t give me any driving restrictions besides no driving on pain meds.
AJMinn- I bet you are exhausted. I can’t imagine being back in school all day and then coming home to your little ones without husband as back up at night. I hope your body adjusts to the routine soon. I’m glad you aren’t having many side effects from the AI’s.
Mmorigan- hope the skin is still holding up.
I’m struggling with insomnia so much lately. I fall asleep later and often wake up and can’t fall back asleep. It is so frustrating.
My skin is starting to hurt a little from radiation. Just barely, but I still have 11 to go, so I’m worried.We splurged on a new “toy” to get through another Covid winter. I’m a big fitness person, and really miss my gym workouts and group fitness classes. I don’t feel safe going back to the gym now, it’s just not worth the risk. So, we got a Peloton. Did a beginner ride and it felt so hard. I’m so out of shape from where I was in January. But I’m giving myself lots of kindness and it just felt so good to get my blood pumping again. I have walked so much the last few months, but I need more.
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Fab4mom, good to know
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Fab4mom- I suggest a lot of moisturizing with whatever lotion they gave you and using mepilex pads (my RO gave me boxes of them) to cover areas of my skin that started to hurt/rub against things.
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Good luck tomorrow SE! You've been waiting on this for a while. The surgery and recovery and emotional impact was not nearly as bad as I imagined it to be - and I hope everything goes really well for you too. But do let people take care of you. Even if you feel like you can do stuff (e.g., cook, put dishes away, fold laundry) if ever there was a time to let someone else do it without feeling bad about just sitting on the couch while they do it... that's now.
It won't last long so take advantage. 0 -
Good Luck tomorrow SE!
I agree with MicD
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Thank you ladies. I'm not emotionally well right now, there's a lot of shit going on besides the surgery. I'm ready to just sleep through it all lol
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good luck SE. I agree with micdpowers, I really don’t miss my breasts, and I was relieved to have it gone. Take it easy and try to let all the other stuff in your life wait.
Ajminn- my RO didn’t give me anything. She said “try coconut oil”, so I’m doing that now. But really, my skin isn’t bothering me much yet. 8 more to go, I’ll be happy to have them done. How’s school going?
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SE- best of luck with surgery! I’m sorry things are rocky. I’m so over 2020, as I’m sure we all are for many reasons. I hope your surgery goes well and your recovery is as smooth as possible.
Fab4mom- I’m sorry your RO didn’t give you anything. I don’t understand why ROs can be so different that way! Hopefully your skin doesn’t bother you too much as you finish the end of rads. School is going ok. I like being back in the classroom, busy, etc, but it’s weird and not the same “school” as before. We’ve already had some staff and students test positive for covid And it’s only been 1 week here, so there’s staff out with no subs (can’t find any) and some whole classrooms that are quarantined for 14 days now. It’s a bit of a headache....
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