Chemo Starting August 2018
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Santabarbarian - I completely agree - we have to be our own advocates and our own researchers. I remind myself that ultimately, my well-being is more important to me than to anyone treating me. Not because they don’t care, but just realistically they aren’t going to be quite as invested.
MACTAZ - good news with the second opinion and your decision to insist on no axillary dissection. As for the nuclear medicine - I had two shots, one right above and one right below the nipple. I’m a total needle phobe, so I found the procedure pretty unpleasant. Like long wasp stings. If I had it to do over, I’d have asked if I could use EMLA cream (a lidocaine/prilocaine anesthetic cream) like you use with your port to numb the area right around the arealoa an hour before. Of course, I didn’t know that was an option at the time. But it is over pretty quickly and doesn’t stay sore after. At my center, they inject the stuff and then after a bit you stand up and they check you with a machine that looks like an x-ray. That part was interesting, I asked to see and they showed me the nodes lighting up.
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thanks wanderweg and santabarbarian,
If I put EMLA cream around the areola and cover a 2” area around should I have the place covered?
I’m a total needle phone also, it’s alwaus the unknown for me. Once Ive been through something I’m better dealing with it.
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Yes, that will be plenty.
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MGJ I feel like my phone must have wandered into some Ryan Gosling movie!
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MACTAZ—I'm really happy that you vocalized your concerns about the axillary node dissection/removal. It's something I wish that I didn't have to have but, alas I had positive nodes up there so it is what it is. The blue dye they inject during surgery into the tumor area and see where the runoff is. Thus, what nodes does the tumor drain to. You will look sickly grey after the injection in the PACU. By sight, you could always tell who got the blue dye.
The nerve pain gets better everyday. My arm ached awfully during AC treatments. I didn't expect that. Now, post chemo I'm exercising a lot more and the arm loves the exercise.
Santabarbarian—I read that also about rads being just as good as the AND. I had surgery first so it is what it is.
I literally did no research prior to surgery. I was just so sad and pissed. My surgeon could feel my bulging nodes in my left armpit and visually on ultrasound they were there. I'm just thankful he didn't go hog wild and take more. His quote was 'I took 9. I was really surprised only 3 had tumor.' Just goes to show, less is more.
Kelly-Anne—if you feel up to it keep me posted on the rads. I have stimulation on Monday. I hope to get going sooner than later myself. I have bought so many lotions, oils, creams, etc. I met a lady doing rads and she had a sticky film (like a huge tegaderm) across her chest and back. She said it was to help preserve her skin. She had just had rads and she was pink for sure. Good luck to you! My hope it doesn't wipe you out. You've been through a lot already.
Happy Hump Day! 🐫 like the Geico commercial
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thanks gals, I will definitely use my EMLA cream. We live an hour from hospital so hopefully it will still be effective when the shots start.
Hubby said I could always put on in car and give the truckers a thrill. I'd be worried it would cause an accident.
KiWilli and Kelly-Ann, let us know how you are when you feel up to it. Thinking of you
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Your husband and I think alike!
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MACTAZ - That should more than do it - the injections are right adjacent to the areola. And you should still be numb if you put a thick layer of the cream on. Although, your husband's suggestion made me giggle.
MGJ - Glad the nerve pain is improving! It's good that exercise is helping it.
The thing I feel changing for the better is the heaviness in my thighs. I walked a couple of miles yesterday and today and although I was tired, I wasn't terribly winded like I used to be just by walking across the room.
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Yes my permanent exhaustion has lifted in the last week or so too. I feel so much more like my old self.... with a sore underarm and a buzz cut.
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Got my phone back and it is unscathed!!
First photo is me doing a comb over w/ my long never-fell-out hair on Dec 8; 2nd photo is me today...
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WOW.. Growing so fast and in color! Very encouraging.
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SB, you look great. I can’t wait, am really anxious to start seeing some hairs growing in,. Glad you have your energy back.
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NICE!!
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santabarbarian dang girl I wish my hair would start growing like that.
MACTAZ surgery is right around the corner for you, and I am right after that. Surgeon said,
"we will schedule next surgery in about four weeks."0 -
hughope1, so how is it going? I can’t believe you are close to a month out of surgery.
I’m still staying “sorta” calm but I know the tension will rise the closer my date comes. I met with PS today to go over plan, at least I think that is what this appointment is for.
I also have finally figured out what I am going to tell my BS regarding node extraction - will only agree to her taking 1-3 sentinel nodes and no auxiliary nodes. If there happens to be gross disease found in any of the sentinels I will address that later. It’s been a stressful couple of weeks trying to get this figured out.
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Santabarbarian - your hair is looking great! So jealous! I am almost 3 weeks behind you for for PFC. do you feel like you’re pretty well healed up from the lumpectomy?
And hughope, how are you doing post surgery?
MACTAZ - That sounds like a really good plan to me about the lymph nodes. I don’t think surgeons really understand what it’s like to live with the threat of lymphedema. Anything you can do to minimize that is a good thing.
I went to a breast cancer social gathering last night. It was nice to be surrounded by local people who are going through or have been through the same thing. They meet every other month and I will definitely go back. My only complaint was that the food was mostly things based on plain white flour and that is something I’m trying to avoid these days!
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Thanks people!
I went hatless yesterday and it was fine. I think people could possibly mistake this hairdo for something intentional..... but they must think I am an anarchist, a lesbian, an ex punk rock star, an artist, or a reaaaally old looking teenager.
Wanderweg, I am feeling good. I developed a water ballon-ish lump in my armpit -- a seroma-- but it does not hurt. Just a weird feeling. Normal and will reabsorb over time.
Re 3 weeks... remember, I did a homegrown version of cold capping... not on chemo #1 but thereafter I wore frozen migraine treatment caps for the taxotere. So my hair fell out anyhow from #1, but I think my hair loss was arrested, and my regrowth got sped up somewhat.
The comb-over hair never fell out.... when the rest came in, I cut it short to match. Most of my scalp looked exactly like yours does now, in about late November. I think I posted about my head looking "dirty" at the time. So I would say you about 6 weeks away from my length!
YAY We will all be hatless and wigless when spring comes! It will feel so good!
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Santabarbarian—No joke, I just yelled out to my iPad “Look at all that hair!!!" That's amazing! You can totally rock the topless look. You look wonderful! Seriously, it looks like a messy pixie.
Wanderweg—We are a tribe, aren't we? I would give my cell phone number (and I have) to anybody who needs a friend through this journey. I met a lady during a RO appt and she just lifted up her shirt to show me her mastectomy scar. The gloves come off and we fight like hell and someone who has lived through this just understands.
MACTAZ—keep those nodes when you can. I’m currently wearing my compression sleeve as the running is giving me cords.
My daughter starts school on Monday. She elected to stay home her first half of 7th grade and do online school as I was so stinking sick from chemo and had stopped driving. Fingers crossed that this goes well. She's excited and I'm scared. But happy to have the house to myself again!
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Hi Jess, I had to give up driving too! Unfortunately my family have zero interest in me taking back my keys. Hope you are feeling better enough to be out and about with your car.
Probably a good call for your daughter to do home schooling. My daughter is older (15) and she found school very stressful knowing that I was home/hospital and unwell.
I get dinner out tonight. Don’t think I can stand the wig so 🎩 night it is. It is cold here and everyone has a hat on now so I don’t feel so conspicuous now. I’m really hoping my duck fuzz head grows some actual hair soon.
🌸😘 for everyone.
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Hi all, hope you all are doing well. I have a question, I’ve been done with chemo now for over 4 weeks but my nose is still constantly dripping and I have a scratchy throat. The dripping happens unexpectantly and when I bend over for something. I thought these two issues would stop after chemo but hasn’t. I am still on Herceptin and Perjeta, I guess it could be that but I thought I’d check.
Hope you all are doing well, other than the above issues I am feeling really good, walking 4 miles a day and don’t need any afternoon naps. (Have to admit I miss my 😴). Stay strong 🤗😘
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MGJ - A tribe, for sure. One you can't understand until you get dragged into it. Good luck to your daughter her first day back at school tomorrow!
MACTAZ - I'm more than 10 weeks PFC and I constantly have a runny nose. Very frustrating. Someone said the other day, "Hope you feel better soon!" And I wanted to yell, I don't have a cold, I am still having side effects from chemo!" Is it related to losing nosing hair?
I got dressed today to go out in gray cords, a black sweater and black boots and I found myself wishing it was warm enough to not wear a hat - with the level of supershort hair I have, it looked pretty intentionally badass. I think I need to just go punk for a bit. My husband loves it!
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MACTAZ, wanderweg... I am just getting over nasal drip. Used to be constant, now intermittent. I am 6 weeks PFC. And I did not have hormones, just Taxotere/Carbo
Too bad we were too sick to meet in Vegas and be Coneheads for Halloween
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Wanderweg & SB, I thought at first it was loss of nose hair but then I saw that I still had some so who knows. SB, glad to hear your drip is slowing, we all seem to have our different timing of SE's. But the dripping is getting very tiring. Maybe there will be a few warm days coming up - I think the both of you would look badass.
All you Chemo gals stay strong, we will beat this I know it. Hugs....
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MACTAZ, I am almost 8 weeks out of chemo, no dripping nose but I still need to blow it occasionally.
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Yup, my nose is still dripping, too. Although, less than before but when I’m outside it’s awful. Snot for days.
Got my kid off to school early this morning. I’m alone in the house. Woohoo! I have my rad CT appt. at 11. I figure I will forget to get my kid from school so I set my phone alarm. (Chemo brain!)
The front of my hair/bangs is finally filling in the very front. The sides are still bald. I look crazy. So old man! I’m having a haircut on Thursday just to even it out. I’m just going to the salon so I can swig a few mimosas and feel normal-ish. I actually touched a shopping cart without gloves the other day. I’m such a rebel.
I’m still just wearing my beanies. I will soon be a badass and go topless. (Just as soon as the front fill in)
Santabarbarian—you still going to go for proton rads?
MACTAZ— Nice! 4 miles a day and no naps!? Getting strong for sure!
KWilli and hughope—How’s everybody doing post-surgery?
I think I will have mastectomy #2 in April. I meet with my surgeon on Wednesday for a check-up.
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I am working on the rads now. I am hoping to get proton approved. We shall see... Between TNBC and a left sided Cancer, I am hoping insurance will cover it. I am looking at U Penn, and Procure in NJ. Both of these places are an hour or so from Manhattan by train, so a nice spot in terms of socializing... I lived in NYC in my 20's, and a lot of my college friends are there. Plus my married adult daughter who is almost 32.
It was a very good strategy to have old friends come to help for my chemos. It made each chemo *slightly* fun, it prompted me to stay strong and be willing to have fun when my old pals hit town, plus my friends are wonderfully nurturing, so they know how to give good care to a sick person. And friends remind a person why they want to stay alive! So I think why not carry it on with rads and have some fun weekends in there?
Dare I say I am feeling pretty normal now! 2 weeks past surgery which is healing well and not painful. I got a "seroma," lymph fluid accumulating in a large water-blister-like pool near my armpit incision. Irritating to have a lump in your armpit but not painful. That has resolved and is reabsorbed now. I am going no hat and it's fine (if cold). I am a middle aged Emma Gonzalez! Hell yeah.
My shy kitten has finally decided her favorite spot is lying across my collar bones, enjoying my internet surfing w me. I think she came with a runt complex of feeling like close cuddles were not her lot in life, due to getting shoved aside all the time in early life. It took me insisting on petting her and bringing her close when she hung back. Its so sweet how much cozier she has become! (Her alpha sister was face butting me the first week.)
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Santabarbarian—I sure hope insurance approves the proton rads for you. Sounds like a cool plan to get rads and hang out with old friends and your daughter. I think I might enjoy rads more on a tropical island with a cocktail in a coconut. That runt kitty sounds like a love. I had a chihuahua that always laid like that on my husband, right under his chin. (I don’t really enjoy chihuahuas but I can’t say no to an animal in need, so I had 3 pound chihuahua ruling my house for 8 years). My Great Danes were terrified of the chihuahua. She was a pistol.
My mapping appt was quick yesterday. They put me through the CT with my arms over my head and shrink wrapped my upper torso so it couldn’t really move. Took a mere couple moments and then they told me with my anatomy that I didn’t have to breath hold. Cool. I figured I might have to being left sided as well. I got 3 itty bitty tattoos across my chest. They look like blackheads. The nurse asked me how long I was to have rads and I said I was told a long time ago, 6 weeks. She’s went to check with the RO and came back and said 7 WEEKS! 🤬🤬🤬
Really!?!?!? Can’t I catch a break?😭 I’m starting Monday morning. Just want this over with! I think I’m done the week of March 14. I hope my skin will hold up. I’m rubbing all sorts of magic oils and potions all over my chest. We shall see
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My understanding is that the longer duration rads are for lower intensity each time so it comes out pretty much the same total.
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I will have to pay a large copay, but only up to my out-of-pocket limit, which I will certainly go past anyhow... So looks like I can do proton! I need to see about Penn. They have a cancer center and maybe access to other trials etc.
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SB and MGJ, you have been talking about proton radiation, is this a fairly new technology? I haven’t heard about. I looked it up and see where they say less SE but is it proven?
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