August 2015 Chemo Group
Comments
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Is anyone else leaning towards not having reconstruction? I had a right side MX and honestly I feel pretty comfortable with my foob(s) and the idea of more surgeries just doesn't appeal at all. I know it's something I can do later if I want to.
Tattoo: I have never had a tattoo, but I am planning on doing something once treatment is over. I'm just looking at designs now. I think I would like something with a group of three to symbolize me, my husband, and our daughter. No birds, because birds and I have a life-long mutual dislike. I might incorporate the verse that has been by motto: She is clothed in strength and dignity, and she laughs without fear of the future. I used it for the cover of my "cancer binder" and my husband's co-workers made me a chemo bag embroidered with that verse (not knowing that it already was important to me).
Have a good weekend.
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I am not going to have reconstruction.
For IBC they don't recommend it for at least a couple of years because of the chance of recurrence (recon would make detection and treatment more difficult). I want to have as few surgeries as possible. I am kind of looking forward to the freedom of not having anything weighing me down in the front, and in fact, I am looking forward to being able to choose how my clothes fit (foobs or not). I am pretty athletic so I think running and working out will be easier without. And the big one for me, I just don't want foreign objects implanted in my body.
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I have a lot I want to write in response to several of these posts, and I'll come back later to do just that.
But, quickly: no steroids for Herceptin only (unless there's a problem), and no, I'm not having reconstruction. I'm having another MX to make things even, though. The asymmetry is messing with my type-A brain, and I'm just fine with wearing my boobs outside my body.
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I got my new Brompton! This is my reward for enduring chemo, and why my name was MsBrompton.
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The lack of symmetry (undressed) is the only thing that bothers me about my MX. I am hoping that an awesome tattoo at the mastectomy site will help visually -- I won't be symmetric, but maybe it will be a better visual composition.
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Sweeeeet, Brooks saddle and all, Ms Brompton! I ride one of these (I only WISH it folded):
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Looks like we may have to start a bike gang! Awesome MsBrompton and Notdoneyet. The only bike I ride is the stationary one at the gym.
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hello, my diagnosis is similar ... My onco recommended the same chemo... I also had indeterminate lymph vascular... I wondered why no radiation following mastectomy???? I see you also did not have radiation ? The hand numbness goes away
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hello, my diagnosis is similar ... My onco recommended the same chemo... I also had indeterminate lymph vascular... I wondered why no radiation following mastectomy???? I see you also did not have radiation ? The hand numbness goes away
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Nope. Not thinking Reconstruction. No one sees it but me. & I'm ok with it.
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Now I want to get my bike out of the basement and take a picture.
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Jojo- are you talking about our Diagnosis being similar? I actually chose NOT to have radiation. They offered me 25 rounds. I should change my bio as I am actually a IIa and not a 1. After great discussion with my BS, RO, and research I did myself with my type of cancer, I decided that the risks of rads don't outweigh the benefits. After talking to the RO my husband told me he didn't want me to do rads but that it was up to me. The RO basically told me that there was no bad decision. If I would have had any node involvement I would have done rads for sure. No questions asked.
Ativan is a wonder drug. I haven't taken any in months. Last night I wanted to have a good sleep. I slept from 11:30-8:30.... I feel amazing today. Best sleep I have had in a very long time. I must have slept right through my hot flashes.
Accupunture appointment on Thursday. I'm not sure if she will do any needling or if it is just an assessment. They said it would take and hour. Looking forward to some possible relief from these hot flashes.
We had my FxxkCancer party on Friday. It was a great time. Lots of food, friends and laughter. Was nice to be able to celebrate with everyone. I don't know if it is just me, but I have a hard time calling myself cancer free. Technically I should have been since my surgery in June. I know I am done with treatment but I still feel like I'm not done. Don't know if that makes any sense.
Kate-have you decided about surgery yet?0 -
DeeRatz, I'm meeting with the rads doc on the 10th, and with the surgeon on the 17th. The surgery is scheduled for the 30th, and I've still got my fingers crossed that I can go back to work in time for the start of the semester, on January 11th. If not? No biggie. I've talked to my department chair, and we've decided that if I need a couple more days, it's not the end of the world.
I'm only going to do rads if he gives me compelling statistics and/or a strong argument for treatment. Most women with my DX don't do rads; I suppose it all depends on pathology, margins, that type of thing. We shall see. Any radiation will have to be after surgery, since my surgeon doesn't want to operate on radiated skin.
What you're saying about your cancer-free date makes absolute sense to me. According to my MO, I've been cancer-free, at least technically, since July 6th when I had surgery, but I think the end of chemo is a good date.
I've been taking 2.5mg of melatonin at night, and it's helping me sleep through the hot flashes. I hope yours get better soon; I do know that agony well. Have you tried the vitamin E? I think that might be helping, too.
Now I have to make a dentist appointment to get this gumline tooth staining addressed--I have a suspicion that one area is actually a cavity: my first cavity, right smack dab in between an incisor and a canine tooth. Sigh. The appointments seem never-ending! And, seriously? Now I have weird staining on my teeth, too, that looks like a piece of black pepper stuck in there? What the actual hell? Talk about adding insult to injury.
On the plus side, I'm going to meet one of my favorite bands before seeing them play live on Tuesday. Really looking forward to it! It'll be me and a carload of other thirtysomething women, and I think it'll be a great time. I may just wear my f*** cancer T-shirt, which was gifted to me to wear to chemo--but T-shirts + port access does not compute.
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My RO didn't push rads on me. He said it was purely my decision. If he had been pushing it on me I would have definitely reconsidered. I had no node involvement and clear margins. Due to the fact that I was multi focal and multi centric they suggested rads. As my BS said, I have very little breast tissue left. So the rads would have been to my chest wall. There is the possibity of causing heart and lung damage as well weakening of my ribs. If I do have a reoccurrence(the black could that lingers in my mind) it will be on top of my reconstruction. So that made me feel better in terms of me detecting anything that could be suspicious.
I have been taking Melatonin. Doesn't seem to do a thing. I even bought some stuff at Costco called Super Sleep. Did nothing either. Tried OTC sleep aid, Unisom....does nothing either. So I finally took out old faithful last night....Ahhhhhh Ativan. If I take one once a week, at least I can have one good sleep a week. Hoping Accupunture helps as well. Fingers crossed.
I ended up going without a cap or wig at my party. I was having such bad hot flashes that I couldn't stand anything on my head. Nobody was bothered and I was ok with it.
Have fun at your concert Kate! Just over a month until Madonna!0 -
DeeRatz & Kate: Know exactly what you're talking about date. My surgery was June 18, clean margins, no node involvement. & I didn't even see a RO. If not for my stupidly high ontotype score... Anyway hot flashes seem to be stronger/ more often with Tamoxifen (been on it 5 weeks). Although no sweating, unless it's too warm outside. I don't notice the teeth, but it seems my veins are darker / more prominent. I can still see the mark where first chemo went in (end of july), and the blue-ish under the skin where my skin was bruised at the ER (beginning of Aug)...
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I'm pretty bummed. I was supposed to have my exchange surgery next Tuesday, but I found out last week that they will be going back in to get a cleaner margin and not do the exchange at this time. The margin is only .15mm so in order to avoid having RADS, my breast surgeon is going back in to scrape more tissue out. At this point I'm not sure how much more tissue they can get, but she's going to try her best. My plastic surgeon said he didn't want to do the exchange because he didn't feel comfortable with it. This means I have to keep these stupid tissue expanders in longer and I'm so sick of them. I want to rip them out and throw them against a wall. Also this means more surgery in my future and I'm already a nervous wreck.
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SoCalGrl-Sorry to hear about your delay. I hear you on wanting to have your exchange surgery. We had our bmx surgeries the same day. I won't have my exchange surgery until Feb. I so want these hard expanders out as well. They are not the most comfortable things.
What made the BS decide to go back in now? Your margins were clear, Small but clear.
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SoCalGal.. What a Bummer!!! 0.15mm? how close can it get?! Did the surgeon leave more tissue for the expander, compare to someone Not having them? Isn't Clean Margin one of the reason of Mastectomy?
Someone mentioned a chinese med to my mom (name given was in chinese), said that their mom-in-law is taking them (dk what's her diagnosis). When I googled it, turns out to be Turkey Tail. I remembered it was mentioned here. But can someone remind me what's it's for? How does it go with Tamoxifen? It's not cheap, neither!
In the chinese Wikipeadia, it said to be "supports / stimulates immune system, anti-cancer. suppresses growth of malignant cells. It reduces the side effects of Chemo (hair lost, vomitting, lost of appetite, oral health etc). it improves survival rate. it also protects the liver."
I guess I am going to email my MO...
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Hi gals,
I'm about to go in tomorrow for my final round of chemo (not counting herceptin for a year and radiation consult is next week). I am relieved and of course anxious and these steroids are feeding that crazy train, you know how it is. I've had a couple of side effects rear their head in the past few weeks, I'm going to talk to my onco about it tomorrow. First is a very slight incontinence....I wipe after I pee but then when I get up I'll leak a bit. or sometimes I just leak a little walking around. Anyone else? I just lost my pubic hair, so the weirdness of pee going everywhere is new, but this is different. I sure am hoping this is temporary.
Also I am having pretty major weakness and some pain in my legs. Mostly my quads, if I squat I can't get up without help, and whenever I move I have a strange muscle ache in my quads. It took me a while to figure out this wasn't normal and just me getting weaker, I think its chemo related.
Ms. Brompton, I am glad to see that bike. I have remembered since this all started that you said you were getting that at the end of this f#$%king chemo, so I am very happy for you. I'm figuring out a treat to get myself. I think some high end audio gear is in my near future.
DeeRatz, yes oh yes to the ativan. That will get me through the next few nights.
Superuis this is worth watching and talks about Turkey Tail, If you don't want to watch the whole thing start at the 7:50 mark, and make sure you see the end
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Final round! So awesome for you RavenSally!!! I also have weakness, but not to the extent that you describe. This chemo business has really taken a toll. I learned in the Army (where one must be very physically fit and lots of injuries etc, kind of like being a pro athlete) that for every day you are down with an injury or illness it takes two days to recover and rebuild. So, keep that in mind. For me after 9-10 months of treatment, I figure I will be back up and running on all cylinders by approx. October 2017, no kidding.
I had FEC #3 today and flavored my ice chips with coca cola so between that and the steroids I am sure I will be up for days. I will be doing drugs, specifically ativan, to TRY to get some sleep but not that hopeful...
Someone sent me some turkey tail, I am going to watch the video. My MO said none of that kind of thing during chemo, but after, that's up to me...
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RavenSally, you're so nearly there! Never heard of these side effects but with all the crap we've all had I bet anything can happen. I'm now 6 weeks post final chemo and FINALLY some things are coming back to normal.
Notdoneyet, good luck with the FEC. There's a light at the end of the tunnel for sure!
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Those Turkey Tails, they are not cheap... The person got it in Hong Kong, she mentioned it's about HK$4000 for 2 months or so, that's about US$250 a month. Thanks for the video. I'm going to watch it & talk to my "people" (MO & Onco researcher friends)...
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(((Bluefrog))) - lots of hugs to you!
MsBrompton - sweet bike!
VickiRides - I'm not doing reconstruction. I had a BMX in July. I typically go flat, but for special occasions I wear foobs. I'm very comfortable without recon & actually like the look now, though I do miss cleavage.
RavenSally - my side effects sound similar to yours, down to the wayward pee.
Can't wait to get back to normal.
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DeeRatz - BS said that the margin was too close for her comfort. We finished chemo around the same time too. How's your hair growth going? Mine is slowly coming in. It looks like a dark shadow coming across my head, but still not a lot of hair yet. I'm probably checking way too often.
superius - I think ideally they want a minimum of a 2mm margin. It's either more surgery or do radiation so I'm opting for surgery. Let me know what your MO says about turkey tail. I started taking it a couple of days ago along with the whole arsenal of other things I take at this point!
RavenSally - Congrats on almost being DONE!0 -
RavenSally-congrats on being done. I hope your side effects are minimal.
SoCalGrl-my hair is coming. I can also see the clear outline of hair. It looks like I have male pattern baldness. It is quite attractive! I can see a difference everyday, literally can see the bald spots filling in. I started taking Biotin and don't know if that has made a difference or not. It is coming so well that I actually went without a hat at the gym today. I had a hot flash yesterday while I was doing my cardio(with my hat on) and thought I was going to have a stroke. So today I decided I was going to be brave and rock the stubble. I have started going capless/wigless around my friends. It is such a hard thing to do.
As for Turkey Tail, haven't even thought about it. I'm sure my husband would like a piece of tail right about now. To be honest I have no desire to put out. My body is such a hormonal/hot flash mess we can't even cuddle anymore. I break out into an instant sweat. I do think since I have been exercising the hot flashes have gotten better. I haven't noticed that Tamoxifen has made them any worse.
My Step Dad passed away on Monday. He has struggled with Parkinson's for years. He had a fall and broke his hip and arm a week ago, then had a heart attack on top of it. He is free from pain and tremors now, in a better place So we will be driving 9 hours on Friday to go to his funeral. Then 9 hours home on Sunday. Pretty excited about the drive. One good thing is I will get to see the beautiful Rocky Mountains in all their glory. I will also get to see my Mom.....0 -
You guys, I met 1/3 of my favorite band last night, and she was wonderful! A truly kind human being. (I'm talking about Corin Tucker of Sleater-Kinney.)
I was so worried before the show, even as we were driving there--will I be able to stand up that long? what will I do if I get tired or feel weird?--but then it was a non-issue. My old self was back for that block of time. There's light at the end of the chemo tunnel.RavenSally, congrats!
SoCalGirl, I'm sorry that's happening. I have to meet with a rads oncologist tomorrow (my margin was 1.5, so we'll see what he says), and I'm dreading it. DREADING IT. I don't want radiation. I mean, I didn't want any of this, but radiation scares me: I'm super fair-skinned; I get a sunburn in about ten minutes, so what would rads do? Ugh. I'm hoping it won't make a huge statistical difference, so I can just say no and walk away.
DeeRatz, enjoy your trip as much as you're able. I'm sorry about your step dad! My dad has Parkinson's, and it's a damn evil disease. I'm glad he's pain and tremor-free now.
I'm so tired of all of this. I'm sure we all are. Since chemo ended, I've been getting more and more irritated with the constant slew of appointments, you know? I just want one day a week when I don't think about breast cancer. . . And I sort of feel guilty about the irritation, because I'm also very grateful that we caught it relatively early, that I've built a great medical team, that I have an incredibly supportive partner, etc. Sigh. It's complicated.
I'm going to take Turkey Tail, too, along with spirulina and a list of other things. As long as it won't interfere with Herceptin or Tamoxifen, I'm probably going to take it. I never want to do this crap again.
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Good riddance Taxotere and Carboplatin!!!! Had my last infusion monday! Still need to do the herceptin and rads but looking so forward to recovering from these side effects instead of starting all over every 3 weeks!
I am getting really flushed this last time. My face looks like I have a sunburn. That is new, but hopefully it all subsides and stays subsided! Looking forward to the next and closing another chapter treating this beast!
Congrats to all the others who are on the last!
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Congrats gooseberry! So many of us have finished or are wrapping up. A couple will keep pressing on... This group has been home for me. I posted the following in my surgery group, but want to post here too because you all have been my sisters longer:
I knew today would be busy, but WHEW! We had our homeschool co-op (8:50-2:00), I left early to take the kids to my dad while my mom took me for the sentinel node injection. I didn't know it would be such a nothing little injection--could have driven myself just fine. Drove all the way back across town to see my chiropractor, picked up the kids' bags and the doggie to take back to my mom's for tonight and most likely tomorrow night. DH met us there to go get dinner and go to church, then back mom's to drop off the kids.
I had thought it a good idea to be busy today and keep my mind preoccupied but it turned out stressful. Home at 9:00 to shower, pack, go over my paperwork one last time... Feeling the pressure and have to be up at 5:45--check-in at 6:30.
For the past few hours I have NEEDED to get home and get on here and connect with my sisters. I am starting to relax a bit now. I have been ambushed by well-wishers for the past few days and, while I appreciate it very much, that alone can be exhausting.
I finally feel good about the surgery itself. I had been very nervous last week and this weekend. Seeing my therapist on Friday and my BS on Tuesday put my mind at ease. What is nagging at me now is how I will look after. Do I have to take the bandages off? Ever?
Big day tomorrow. So many of us are scheduled. I am thankful to have you all to go through this with. It is starting to feel like a team sport. August Chemo group, December Surgery group, January Rads... We get through it all together.0 -
I don't post too much these days but I want to tell Kate, YOU CAN DO RADIATION. and you will rock it and it will be NOTHING like chemo. Chemo is a bastard. I had an early skin reaction to rads. 5th day after 4th treatment. I am handling it with aloe Vera and polysporin. The radiation does not mess with your head or your belly or anything else.
Am I tired? yes but I'm driving 180km round trip and taking care of a new dog and two kids with extra curricular activities. Am I exhausted? nope.
I am 12 of 21 tx done. I have a redness in my axilla, and I have a 'rash' on my upper left breast and along the entire length of the under side of the bra. I use polysporin for the open sores on the rash and aloe vera on the rest. No hydrocortisone so far....
You are a strong woman you will be fine!
Think positive, be positive, feel better ... you can do it.
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DeeRatz, I'm sorry for your loss. I hope your trip goes well.
gooseberry, congrats on being done with the chemo stage!
Musosgirl, good luck to you!
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