Starting chemo February 2020
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i think you look younger with the pixie cut 😁
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ajminn3 and Fab4mom, ladies your hairs look great. Fuller than mine.
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ajminn3 -it may not be what you're used to, but it looks from your photos that you have a nice shaped head and hair that would make a really cute pixie cut when you get enough for a style. It may not be what you're used to, but I bet it will look cute.
Fab4mom - you too. And you still look young. But I know what you mean... looking at myself I feel like my skin is pale, transparent, and slack and that I've aged at least 5 years. I gotta believe that this will improve when we're done with all treatment.
I'm still on H&P - got some today in fact, along with a 2nd iron infusion because my hemoglobin is not recovering on its own. Even on the H&P I still have bloody nose issues - not as bad as on chemo, but still lots of red in there when I blow. And my skin is really thin and fragile in spots - mainly my eyelids and now a spot on the bridge of my nose between my eyes. And my nails are so fragile that I can't open anything that requires me to pry with a fingernail - like a spice jar thingy - or my nail will bend and break. I keep them super short.
Got my last saline fill today too. Hoping to get the implant swap before Thanksgiving.
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Do you ladies have full use of your arma already?
How long did it take?
Are you still doing exercises?
FYI, my report came back with clear margins but they allegedly ended up removing 19 lymph nodes from under my right arm. The back of my right arm is numb and it feels weird when touched by anything.
Also the found pre cancer cells in my left breast so I'm glad I decided on a bilateral mastectomy even though breast surgeon didn't agree.
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Thanks ladies, I think I’ll be rocking the no hat/scarf look sooner rather than later in public. My hair is too long for a scarf and kinda looks funny. I think it’s time!
Micd- I def still have some skin/nose issues on just HP. Fortunately I’ve avoided a lot of the other not so great SE’s of HP it seems.
SE- I’d say I had pretty good use/range in my arms about 8-12 weeks post BMX/implant recon. Now after rads, I actually find my range of motion on my left side (rad side) worse. I can tell I have a lot of scar tissue build up and tightness. It’s a bummer.
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SE, I had my surgery in July. So almost 3 months out and my armpit area is still numb but the sensation on the back of my arm seems to be coming back a little at a time.
I had 5 positive lymph nodes and my treatment since surgery is I'm taking Arimidix to block estrogen and I'm 2 weeks into my 6 weeks of radiation.
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Dysonsphere- I hope rads go quickly and have few SE's for you!
Has anyone heard from Hray recently? I haven't seen her on here for quite a while. Hray, hope you're doing well!
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I've thought about Hray too.
Back of my upper arm was partially numb and still is - but has improved (7 weeks out). It actually hurt (felt like chaffing) for a few weeks, but that is gone now too. Worst was a mosquito bite that I got on back of arm and I could feel it itching but no amount of scratching was satisfying.
I feel like the expander is jabbing into my rib cage.
I've been hitting some tennis balls with my kids lately and I feel like my range of motion is very good except for raising my arm straight up for overheads and serves. Did everyone get the over the chest muscle surgery? Sounds like the under the chest muscle one was much harder to recover from - in terms of range of motion.
I have my first singles match tomorrow (friendly local league) and I think my biggest issue will be my massive expander boobs getting in the way and jabbing me. I figure if I get through one set it will be an accomplishment.
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micdpowers, hmm, I'm pretty sure I got under the muscle TE. I'll confirm on Monday when I see the PS.
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SE - had a lot of numbness and chafing like irritation after surgery, it did subside quite a bit.
Micdpowers- how great you are back to tennis. I recently picked up Pickleball, it’s like low key tennis. My OT said it’s great for recovery and motion. My expanders are small so they don’t get in the way, lo
Dysonsphere- hope the radiation is smooth it was definitely the easiest part of treatment for me
My side effects from last weeks Kadcyla seemed to have subsided quite a bit, so now I know I’ll have to plan for a recovery week, and hopefully it will be no big deal. Also, my armpit is pretty angry from radiation. My husband says it looks like raw meat, it dark red and sensitive. Today is one week from last rads, so again, hopefully the healing starts from here.
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my arm pit hurt a lot from Rads. I started healing about 1 weeks out, my arm/pit/side peeled everything else just faded from burn to a slight tan (3 weeks out).
I'm hopeful it fades all the way back to my normal skin tone but, I saw in a Facebook group that some people ended up with a permanent tan. 😔
I see my PS tomorrow as a post Rads follow up just to check the skin. Will ask about that question.
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I wouldn't mind a permanent tan on ny whole body but one side would suck lol
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I hope we do hear from hray soon and she is doing well.
This has been a difficult week for me. It's been the easiest stretch as far as treatment, but just accepting that I have stage 3 cancer and will deal with certain side effects (joint pain, possible lymphedema, and these mood swings) for the rest of my life has suddenly come crashing down on me. It was at my Oncologist visit this week when they mentioned that I have no breast tissue any more. I had a bilateral breast reduction but I thought I would still have mammograms. But they say no, no breast tissue, no need for mammograms. They said I do need to be very vigilant about certain things, due to the spread of my cancer to 5 lymphnodes, because the biggest concern from now on is cancer in bones, lung and liver. For some reason, all these months, I was convincing myself that my cancer was caught early and that 16 rounds of chemo, surgery, and radiation are just the normal treatment plan. That my cancer center is just aggressive with treatment. But no, I have metastatic breast cancer and this is my life. I have to measure my life in 5 years and maybe 10 year increments. My family says I should just believe that I will be around until my son grows up and lives his life. But he's 6 years old. It's hard for me to be that optimistic.
I know you guys know how I feel, so I'm venting. I'm angry, and sad. Some emotions I haven't really allowed myself to feel until now. I've been pretty optimistic, even through chemo! And I'm still grateful to have made it this far but this all sucks.
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Dysonsphere - I was told that even if it spreads to the lymph nodes, it is considered early stage breast cancer. It’s not metastatic until it spreads beyond your nodes. But even still, I understand how overwhelming it is. My cancer was in at least 4 nodes, and my treatment is overwhelming. Recurrenc is an always present fear. When it gets to me, I just try to focus on today, and how I’m feeling and how I can make it a good day. Because nothing in life is guaranteed and I can’t control everything. We did everything possible to stop the cancer, and I try to feel peace with that
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dysonsphere, I'm sorry. We know exactly how you feel. That's how I felt when I had to see a psychiatrist. I also have minors. There's nothing I can say that will make you feel better. Virtual hugs. Cry all you want, scream, get mad. Who gives a fuck. Get it all out.
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How did you ladies sleep after the surgery? I'm tired of sleeping on the bed wedge. I'm a side sleeper and have not found a comfortable way to do that. Maybe I can try your ways and see if anything works.
FYI: I wrote this without my glasses. I'll check for mistakes tomorrow lol
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Micd- awesome you’re playing tennis! I’m embarrassed to say I’m not sure where my implants are...I should really ask. That time was such a blur for me since it was at the beginning of my cancer mess and I just wanted my boobs off and new ones put in. I did have decent range of motion post surgery. Unfortunately rads has made my range worse. Need to keep stretching.
Fab4mom- my armpit, underboob, and chest were so raw and red post rads. It did get better as the days went on. A lot of it peeled like a sunburn, which relieved a lot of the pain.
morrigan- my upper chest seems to have returned to normal color, but my armpit still has a faint pink line/area.
Dyson- I’m so sorry. The mental/emotional pain of cancer has been harder on me than the physical side effects. It’s so overwhelming, especially having young kids. My oldest is 6, youngest is almost 2, so I feel you on having feelings about not making it to see them grow up. Like Fab4mom said, I try to focus on today. I’m alive today and not dying today. I’m here today. Sometimes it helps and other times I get overwhelmed. We’ve been through a lot!
SE- I had to sleep half sitting up on the couch...I am a side sleeper and it was a good amount of time before I could comfortably sleep on my sides.
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dynosphere - I'm sorry you're feeling that way. Vent away. While I think we all try to find some positives in this experience - the fact of the matter is it just f-ing sucks. Thinking of our kids in this is complete heartache.
SE - sleeping is hard at first but does get better. I was a stomach sleeper but the desire to roll that way is infrequent now. I have several smallish soft heart-shaped pillows that someone made for me. They fit nice in my armpits and help. I find that I can sleep on my side much more now - but can't be "side forward" or things squish. Kinda like on my side with a pillow behind my back that I can lean slightly back on. putting one between my knees helps too - but I think I have also just started to get used to sleeping on my back.
One of my boobs has remained full and tight and hard to even push on since my last fill on Tuesday. But the right side is now very loose and slack and easily pushed into/dented in. PS office asked me to send them some photos. So now I'm all paranoid that I busted my expander playing tennis!!! I googled that and it seems unlikely, but you know how the mind works. Waiting for a call back after PS looks at the boobie pics and video I emailed him.
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micdpowers, yeah, that's how I started sleeping sideways after my tt. I tried it last night off and on and woke up with my left arm numb. I don't want to do it with my right side because I'm scared lymphedema will come out.
I hope there's nothing seriously wrong with your breast. That would suck.
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How often did your tissue expanders get filled, weekly or longer?
I'm still trying to decide if to go to my PS appt. tomorrow. The appt. is too early to call and ask before driving that way. My two drains left are still drianing too much so I don't want to go in if he won't be filling my TE.
P.S. I just Googled it lol and it looks like it can be done weekly or biweekly.
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started bi-weekly then we went to weekly fills in order to be completely filled before radiation
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Yeap. Just saw him today. He filled only my right breast. He says he will be filling it weekly to have as big as possible before radiation. He did not fill my left breast. He says he doesn't want the left to get in the way of radiation. He says he wants the rays to go in one side of the breast and out the other. If the left breast is full the TE might redirect the rays towards my lungs or heart. So, I guess I will be lopsided for a bit lol
Oh and still was not able to remove the last two drains.
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They would have deflated my non-surgical breast if I had needed radiation, to get it out of the way. Which I don't need now, but I do find myself very lopsided anyway. I didn't get a clear answer on Friday, so when my expander was even smaller over the weekend, I called on Sunday and they put me through to PS. He said not to worry, and not to come in for two weeks because sometimes the scar tissue seals up the leak. So they'll try filling it again I think, but even if it doesn't stick, I should have enough skin to work with. So... I've got a super perky D or DD on the left and a flattish, sad B on the right. Sigh. At least its getting to sweater weather in IL - less noticeable under that than a tank top. I asked if I should stop running/tennis and he said to go about my usual activities, that it was probably unrelated. I'm thinking the leak started after my last fill on Tuesday and wearing the tight sports bra while I played tennis on Th just helped squeeze the saline out. It must be up high, because its not totally empty. I think it's down to a point where it's not getting any smaller. It's somewhat disconcerting, but it's not the worst and I'll just roll with it. Maybe they'll get me to implant surgery faster because of it.
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That's a big difference in size. Thank God is just the TE and not the actual implant.
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With the lymphedema risk, do any of you know if we will ever be able to wear underwire bras again? I am tempted to get rid of mine but I want to make sure I won't need them lol
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i thought the underwire issue was only related to implants?
I actually haven't worn a bra since surgery, except for the sports bras to start. I hope we can eventually wear under wire bras, all the pretty bras are under wire.
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morrigan_2575, I have some cute lacey(sp?) bras from VS with no wires.
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I’ve found with my implants that underwires aren’t very comfortable or needed (which is crazy to me because I’d 100% need an underwire previously!). I actually don’t even wear bras very often any more. They seem more of a nuisance to me now with implants. Sometimes I do some basic sports or flimsy bra but that’s about it.
How is everyone doing? My 1st graders classroom got “quarantined” for the next week due to multiple exposures in his classroom. He hasn’t shown any symptoms (He was exposed 8 days ago, yet the school just let us know yesterday) and goes in for his covid test tomorrow morning. That’s about all of the “excitement” around here, so I guess I can’t complain too much. I have H/P infusion 8 this Friday
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We are doing good. I kept my kids doing virtual school because I knew all of that was going to happen and I don't want to put them through the horrible covid tests or to be quarantined. I'll keep them until it is no longer an option.
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My son started 1st grade this school year. I decided to home school him for this year. I will be a teacher once I am done with treatment and recovery, so I figured I could handle it. I just didn't feel like having to stick to the schools online schedule and I don't feel like it's safe for him to go back yet.
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