Chemo Starting August 2018
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Kwilli, There is a trial at U Penn for TNBC people who have finished their treatment. I do not know whether or not they would take a person from Canada? It's for prevention of recurrence. It's the only one I could find that takes people with no residual disease before there is recurrence. There were a few who would take a person w residual disease.
I believe if you are in a trial you are not charged beyond insurance. FYI there is an observational trial at UMD for proton rads as well.
Otherwise it seems like diet and exercise (and for me, supplements, Metformin and Melatonin) are the best pathways for prevention. I am fasting-mimicking now to prep for rads and I intend to fast every month or two as that seems to keep the immune system tuned up and strong.
We have to get ourselves through 3 years. My onc said he has only had one patient in his career who recurred after 3 years, and it was 3 years one month.
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KiWilli, Please give us an update once you find out what your drs plan is. Did you get your path results? I wasn’t sure what your results were but hope they were good. Keep up the fight, we are here for you
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Wow, cefinkc, that just looks like an intentional short haircut - that's an amazing amount of hair. I wouldn't hesitate to be out and about with that! And I think it's a gorgeous color.
KWilli - My breast surgeon told me her department at UT Knoxville is partnering with a couple of big guns in the US (MD Anderson and Memorial Sloan-Kettering) on a TN trial that looks very promising. I am excited to hear about anything new coming along.
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KWilli and cefinkc—You both look amazing! My darn bangs! (Grow, grow, grow! Please!) My gosh you both look fabulous! I love the short hair on everyone, seriously!
Dinner with friends went well. I drank too much red! (Thank you Uber!) And cried a bit (happy tears) and lost my eyeliner but boy was that fun.
I was in my house waaayy too long through chemo. Now I feel like I just want to get out and do everything.
Started week 3 of rads, no problems at all still.
MACTAZ—healing well?
Kelly-Anne—how are you doing? Big hug to you.
Santabarbarian—I’ve been enjoying eating so much I need to get back to a fast cycle myself. During the week I’m back to being plant based but the weekends are too much fun with wine and charcuterie plates. My discipline fails me Friday night at the wine bar down the street. Oh well. How are you going to fast with rads? I get up in the morning and go to rads and then I run and then I eat so it’s a long spell in between when I last had a meal. I ate today at 1pm since I had an acupuncture appt. so it’s a bit of a mini-daily fast.
Thank you ladies for everything! You all make my heart smile! ❤️❤️❤️❤️
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I thought Id do a mini fast over the weekend every 2 weeks. I've loosened up my diet a bit too but discovered that I feel better on the clean fuel....
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Santabarbarian, did your oncologist prescribe metformin or were you on it prior to the BC diagnosis
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No I was not on it but I read about the anti cancer properties, and I asked my onc about it, and he prescribed it for me.
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Santabarbarian—I agree totally. I feel better on my plant based diet. Cheese pizza tastes better, though.
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Hi all, hope you are doing well. Got one drain out today and other drain on Friday so I’m happy. Have had quit a bit of pain with the TE, hoping it gets better. I’m doing well but not close to where I use to be physically. I looked in the mirror the other day and OMG have I aged over the last 6 months. Im hoping my sallow skin improves now that I’m through with chemo and first surgery. Take care, sounds like everyone is doing good
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MACTAZ, those drains are the worst! I felt like I really started to heal once they were out. But I also found the TEs quite painful and was glad when I had my exchange surgery.
So, I’m the queen of weird surgical side effects. First the calcium deposit in my ankle getting pressed into the nerve bundle during my breast surgery (still healing from the surgery required to fix that) and last night I noctied that I had dark bruises on the bottom and underside of my tongue after my port removal surgery yesterday. I usually have a mild sore throat after surgery, but this is new. It looks freakish. I sent my breast surgeon a note asking if it might be due to the breathing tube in anesthesia.
You know how surgeons scribble on you with a marker before surgery to mark incision sites and so on? This was mine from yesterday:
My son said I should turn it into a tattoo. I adore my breast surgeon, but I’m going to pass on having her intake permanently tattooed on my chest
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9.5 weeks PFC.... remember, I had a faint "dirty" five o' clock shadow coming back in by my final chemo, from my cold caps. Still an extreme widows peak but I had that hairline already before chemo, which my long hair disguised. I think I look like Tintin!!!
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Wanderweg, congrats on getting your port out. Mine will be later this year but I’m looking forward to that. I agree with you, no tattoo of your surgery scribble, who wants to be reminded of this. Let us know what you find out about your tongue, sounds kinda funky.
Santabarbarian, you look fabulous. I will admit I had to search tintin on net and when I found the cartoon had a big ole belly laugh.
Take care all.
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I was given the perfect end of chemo present today:
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bahaha!! That’s awesome! I love your hair, by the way.
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Well, my shower has to wait until Monday. Unfortunately they didn’t think the one drain could be pulled yet, I still have more fluid draining then they want to see. I’m hoping it slows by then, I really want a shower.
SB, even without chemo brain I misplaced my keys. I love your present.
Hope all are doing well with there rads and other treatments. Happy weekend, I’m feeling almost human again.
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Can you do a careful bath, Mactaz?
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Santabarbarian—Totally funny! What a great gift! And your hair is amazing! So jealous! When do you start rads?
Wanderweg—no more port! Congratulations! I called my onc who put in an order to have the surgeon take mine out, too. I can’t wait. Mine will be taken out in the office. I figure I can smear the site with all that numbing cream I didn’t use through chemo and they can hack away. I’m thinking about a tattoo myself but my surgeons initials might be a no-go.
MACTAZ—damn drains. I just sat on a bench and faked taking a shower when I had my drains. I think I just steamed myself mostly. But, psychologically I thought I took a shower. I’ve heard TEs can make you sore.
Week 3 of rads are done ✅ My skin got so angry yesterday when they did the gel pad on it to bring the rads to the skin surface. Ouch. Like a bad sunburn on super tight skin. Totally fine today.
Can I please be done with this crap yet? I think I need a glass of wine.
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MGJ I start on Monday! I fly tomorrow!
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santabarbarian - Your hair is amazing! And the key bowl cracked me up. Safe travels and please keep us posted on how rads go.
MACTAZ - I hated not being able to shower. When I had my drains in (17 days before the second two came out), my husband rigged up a tilted chair so he could wash my hair over the tub. But I really wanted a shower. I hope that last drain comes out soon!
MGJ - How many weeks of rads do you have altogether?
Haven't heard back from my surgeon yet, but the bruises on my tongue are fading and the consensus from folks in the medical field who I've asked is that my tongue was bruised by the breathing tube.
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Mactaz: No showers?! I wonder what is different here; as I was allowed to shower after 24 hours, drains and all? I am sorry that it’s been so long. Man will it feel good when you get in there!
SantaB: safe travels!
Wanderweg: no more port!! Woohoo! Does your tongue hurt?
MGJ: I hope it’s done soon... mmmmm wine!
I enjoyed a very “normal” week. Playing with my son, chatting with my daughter; working, cleaning and baking. It’s been so nice. I see the radiation oncologist on the 19th...
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KiWilli, my PS is very conservative and worries about bacterial infections - he also has me taking antibiotics until the drains are out. I went Friday and it was a no-go, so still haven’t had a shower or bath, only sponge bath. Im hoping Monday is the day, two weeks after surgery and I’m getting ripe.
Wonderwig, I use a wash cloth with baby shampoo to wash my hair, what there is of it. That works since I have so little of it. Good news is I do see quite a bit of hair coming in. YEAH....
Hope all are doing well.
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Yay for hair re-growing, Mactaz!
Yay for ports departing!
Yay for 1/2 way through rads MGJ!!!
KWilli & wanderweg, thanks for the wishes!
My travels were wonderful. Kittens were SO GOOD. They did not meow, they curled up and snuggled or slept. It was about 9 hours all told that they were in the carrier between drive to LA and flight. I put my hand in and stroked them ever now and again. I was worried about pee (they held it).
In a genius move, I bought a play-pen like cat kennel that when folded up is about a phone-book size, but springs open to be a 3 x 2 x 2 mesh-and-fabric kennel. I put it in my carry-on. The minute I got my rental car, I opened up the kennel, put a small litter box and litter in there, and put them in that, in the way back of the car, for the drive from Newark to Somerset (easy/ 35 mins). Now we're at the hotel just chilling. It's a suite, and the cats are currently sniffing every surface.
I begin rads tomorrow afternoon. I will provision myself nd cats later this afternoon, and am thinking of other things to do around here. I have a project to work on for the month but also want to explore the area a bit.
Some cool serendipity.... My ancestors on my Dad's side came to NY from Holland in the early 1600s. The history I have on this wing of the family has a lot of them either born, wed, or buried in Monmouth County NJ/ Middletown/ New Brunswick. Which is basically where I am! It's a weird and uncommon family name. There are a few old Dutch churches, historic homesteads, etc, related to them... So I googled the name + Somerset, NJ (the town I am in) to see what might come up. Believe it or not, an old private family cemetery.... maybe six graves; used to be part of a private farm. Now it's in a woodsy greenbelt bordering a collection of Del Webb homes.... and, literally within two blocks of my hotel. I will walk over there and lay some flowers later... I love serendipities like that.
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SB, how cool is that, it is fascinating tracking down family history. Enjoy yourself, and good luck on your rad treatments.
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Hello My Girls, Things are going well! I am just waiting on the dang xpander to be taken out and the implant put in, scheduled for the 21st pre op is the 15th. and reconstruction on the other side. I am getting nervous! Hopefully it will not be as bad as the mastectomy was? Any input girls? Gotta go phones are ringing at work. xoxoxoxo
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Hughope - The recovery from the exchange surgery is waaaaaay easier than recovery from the mastectomy. Not pleasant, of course, but much less debilitating and you have the relief of having the expanders out. I really, really hated the expanders and found them very painful, so having them gone was wonderful. The 21st! That will be here before you know it!
KWilli - Is that appointment on the 19th a consult to start rads?
santab - I'm with you on the joy of serendipties! I love that you're taking flowers to the family cemetery. Glad the kitties are there with you and wishing you much luck as you start your rads.
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Hughope, good luck with the implant surgery! You will be on my mind that day!
Wanderweg, I’m not sure just yet; I haven’t seen my onc tp go over the pathology results as they required extra testing. There were 2 types of cancer in there and they’re testing to make sure it’s not a second cancer they didn’t know about. Weird. I am going to assume it’s all good. I’m feeling so good; I don’t want to waste my time worrying
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KWilli - I have seen several people on this site with two kinds of cancer in their tumor. I hope your path results are clarifying and that you get some answers soon. I am glad you are feeling good! Isn't it great when the chemo blow finally heals, and you feel like yourself again?
Well, I found the graves with no trouble... They were in a brambly area right where the internet said they would be. I brought some flowers and laid them on the headstones. There were three that I could see. They looked like they might have been moved or disturbed over time... I am glad I went. It got me thinking about mortality, and being remembered... Somewhere, there were descendants who sold the farm to a home developer... and people gradually forgot about the great great great grandparents buried there. These people were born in the 1700's, died in the early 1800s. I doubt anyone has visited these graves in many years so it made me feel good to do it.
Kittens..... I feel kittens should be covered by insurance! Better than ativan, better than prozac. What would I do without these sisters? It would be so boring to hang by myself in a hotel. Just watching them as they watch the snow from their perch in the window is so delightful. Of course they immediately found a hole in the fabric that covers the box spring and found their way under there. It was a bit alarming to come home and find no kitties, but when I called them they emerged, yawning and stretching.
My first appointment for rads was perfectly smooth. This center is very on top of it which is so reassuring. I walked in yesterday and the guy at the desk in the lobby greeted me by my first name as I walked up (ok, he had a photo/name tag for me, but still... those kinds of things make a difference). They gave me a robe to bring w me each day so I am warm and covered. No waiting. Very nice personnel who explained everything.
They had made three different forms that they put over the opening where the beam actually comes out, which had odd shaped cutouts made by a computer to direct the beam in specific ways. The foam form they made last time was in place, and I laid down in it. They lined me up w tattoos and then did 4 or 5 very brief zaps, with a few minutes in between each to reposition the beam and put a new form on it. About 20 mins total. I met with the nurse and RO after. I will see the RO weekly to be checked and have my Qs answered.
Have a good day everyone!
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santabarbarian Hair is looking great, can't wait till I have that much. LOL! Mine is just a shadow now.
KWilli Stay positive girl, we have come to far.
wanderweg i had mastectomy on right w/expander and doing a breast reduction on the left to match it. Is this what you had done? And what am I looking at for pain and being able to get around? Also do I get drains again?
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Santabarbarian—wow! I love that story, so cool that you found the headstones. I also agree that our furry critters can make any day better. So smart to think about the fold away pen for them for travel. Your rads center sounds great.
I had my lady bits lasered yesterday at the ob/gyn. The Monalisa system of lasering sure got my attention. I had a fraxel on my face a few years ago but to have your nether region done is something else. The discomfort is better today. Although, my who-ha does currently resemble a Elephant Seals face. Good times.
Wanderweg—7 weeks of rads for me. 36 sessions. Just got the preliminary bill yesterday for $65K. I just smile now and bury the paper in the big stack of all-things-cancer.
MACTAZ—every surgeon is so different with drains. My plastic surgeon says absolutely no to showering at all but my BS said go ahead. Just so you don’t feel bad about being ripe I had a drain in for 39 days and couldn’t take a shower. Yes, 39 days. I was euphoric when that baby finally came out.
Ports coming out February 25! I’m so happy!
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MGJ I've had face lasers.... YOU are a brave woman!
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