TRIPLE POSITIVE GROUP
Comments
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What a great program! A lot of my friends work out regularly and a re always encouraging me to join, but i dont based on my limitations and I think they just dont understand.
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That program at the Y sounds so great. I looked for one near where I live and there is only one Y in Michigan doing it - and it's 45 minutes from home. Shoot.
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Hi ladies- my last chemo was nov 22nd, and i did lose some of my eyebrows and they grew back pretty quick. Today ive noticed some of my hair on eye brows is falling off.............any idea why?
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Redinrah There can be a couple of reasons. This is what I have read:
1. Hair grows in cycles. Once it's finished it falls off/out. We shed hair all the time. We usually don't notice it because the hair cycles are staggered. After chemo it can take a while for the staggering to happen again so right now it's all falling out at the same time.
2. The other might be due to chemopause/menopause. Some people do get thinning hair and eyebrows as they age after menopause. I don't know how quickly this happens. I believe it's due to the reduced estrogen so if you are on Als this might be part of it too.
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Lago- Im 36, so menapause LOL wow........I do know that i havent had my period yet....but i swear i thought i was spotting the other day. Im on tamoxifen since FEb. Jeez, thank gawd i didnt thread my eyebrows..........but from what i remember they grow so fast.
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Well then it has to be your hair cycles are too close together
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My eyelashes/eyebrows fell out several times. It takes a year to get back to "normal". Unfortunately, my new normal has a section of eyebrows that stick out and won't lay flat.
Juli
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I am very happy to find this group - I was noodling around in the other posts & didn't see anyone HER2+. I'm triple positive too; diagnosed a year ago & finished w/chemo, lumpectomy, rads, a hysterectomy & oorectomy (sp?) and down to my last 2 Herceptin infustions - I'll be done with those in June. I've been on Arimidex since the hysterectomy; prior to that I was on Tamoxifen.
Eyelashes almost back to normal; hair about 1 1/2 " long, dark & curly, providentially my armpit & leg hair are growing nice & slow so I almost never have to shave - what a plus!!
So far so good; my lumpectomy didn't have margins as clear as they'd like but the only thing left of the 5+ cm tumor were some in situ cells at the marker site - I had some interior nodes involved at first but they didn't light up the PET after chemo, plus we zapped that area pretty good with rads. I'm feeling cautiously optimistic-
Has anyone read the book The Emperor of All Maladies by Siddhartha Mukherjee? It's fantastic; about cancer & not depressing - a very good read, and written by an oncologist. Anyway, one of the chapters explains the development of Herceptin & how it got out into general use. One of the first women to be treated with Herceptin in the 1990s, Barbara Bradfield, is featured in the chapter & he tells her story. She's alive & well & living in Western Washington State....and totally cancer free. Her photo is in the book; pretty cool.
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Welcome to the Triple Positives! What type of chemo did you have?
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Welcome Nandee. You are the first triple positive with 5+ tumor, no nodes I've seen other than myself. Wow you've been through a lot. What chemo did you do? I did Taxotere/Carboplatin. I'm still doing herceptin too. I finish at the end of September. About to go for another today.
I wasn't given the option of lumectomy. Large tumor/small breast not a good candidate but I'm OK with that especially since they found LCIS in the other breast.
I heard that book was really good.
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lago - how are you feeling?
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Nandee--Mukerjee's was the first of the books I read when I was diagnosed. It's not focused on BC but that was actually good in a way. It was an excellent overview, in layman's language, of the history of cancer research and treatment. It's encouraging to understand how far we've come and how lucky we are that the research is leading to earlier detection and targeted treatments like herceptin.
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QUESTION!! Advice needed!!
I will have my last Herceptin treatment next Monday the 9th (hooray!). Since I was going to the treatment center/hospital every 3 weeks post chemo, I didn't give any parting gifts to the nurses, staff, etc. And now I would like to do that.
Does anyone have any great ideas for something small to give the nurses, doctors, front desk, lab people who I want to thank? I go to a large center so there would be about 20 people if I included all, which I think is right. I thought of cupcakes from a shop in town - maybe get them decorated with pink ribbons or something?
Have any of you given something cool, or seen someone give something cool?
Thanks for any thoughts!!
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Hi Saralmom - with summer and all coming up (hopefully soon!) my onco nurses (all young and cute) said they LOVE fruits/veggies. They said they get a lot of sweets. I brought bagels and cream cheese....
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saralmom-
1. Yay for the last Herceptin!
2. Cupcakes - so cute and how sweet of you to want to thank all your peeps!
3. Maybe a cake with a picture of your family (they can imprint a picture transfer thing - do you know what I mean?) and "thank you from all of us" written on it. I know my whole family is so grateful for the treatment I am receiving. Just a thought
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Sara I know at christmas time I made 3 huge batches of my cookies. I just dropped them off one day when I wasn't being treated (I live 6 miles away from my treatment center). I know my husband sent the nurses that took care of MIL a huge basket from: Zingerman's
There are also places (like this: http://www.bundlesofcookies.com) that make cookie bouquets.
Fill you in later on my herceptin treatment later. I'm now off to PT. Shingles are drying up but still hurt.
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Maybe instead of food orientation you could purchase novelty items for med. professionals...
http://shop.advanceweb.com/search.aspx?keyword=pin&CS=0&CCID=&AS=-1&startpage=2
There are some fun pins, book bags, etc....
And a nice baker's dozen from Panera would probably be a welcome addition
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Saralmom-they will appreciate anything u get them!!!! What about one of those edible arrangements things???
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TonLee - did you get that appt about your cords? Want me to stop bugging you now??0
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hillck and all - just came back from the Livestrong initial appointment. Love it! So right that it does feel normal and a vote of confidence in my future to return to the gym. I was actually surprised at how much strength I have considering five surgeries, still in chemo and have not worked out in a very long time. Today I walked on the treadmill at increasing speed and incline and it took me 10 minutes to reach my target heart rate. I did a flexibility test - standard reach past the toes in the sitting position, height/weight/waist measurement and then bench press and leg press. My trainer will now design a program for me which I start next Monday! I go twice a week, with my trainer, for 12 weeks and it is FREE! So excited!
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Hi All Just catching up now and this livestrong program sounds great, can someone post a link? Thanks! In other news just completed TX 3 and the Nuelasta Bone pain is killing me!!! I am on Claritan and Zyrtec and Advil...
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Nandee. I am reading that book. Really interesting as to how relatively new chemo is. I m slowly getting through it.
Book character parade at school today. Yours truly was Peter pan, with my Mary Martin hair. So much fun to see all the little ones dressed up.
Libraylil0 -
Omaz,
I have the number, will call tomorrow...it's actually loosened a bit...but the webbing is till there....is it ok to get LE therapy during Rads? I can't imagine rubbing and stuff will be a good thing??
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SpecialK,
I'm so happy for you. I can't wait to be able to really exercise again....going all out! I think you're very wise for participating in Livestrong!
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Over on the cold caps blog, one of the girls brought up 4XTC versus 6xTC and here's a link to an article on it. Interesting stats.
http://her2support.org/vbulletin/showthread.php?t=48342
I'll be asking my oncologist about this next week when I go for TX#3.
Arlene
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TonLee - I started LE therapy during about the 5th week of rads, my cording started about week 4 of rads. I didn't have radiation to the axilla though so I don't know how they do that. I had radiation to the whole breast which included my side under the armpit down to about the bra line and to the edge of the back. It included my SNB scar too.0
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Glad to find you guys. One herceptin left on May 17 yay. Dx 1/10 IDC 1.7 cm, grade 3, 0/9 nodes her2+, E+ P+ 10%, 4DD A/C, eow, 12 taxol/herceptin weekly, 7weeks daily rad, herceptin every three weeks to finish out one year. Lumpectomy with clear margins.. I too am having trouble emotionally due to fatigue and some fear of the unknown. Glad to know I am not the only one. Linda
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Here is the YMCA link for Livestrong. Not all YMCA locations have the program but this is the overall description of the program: http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-at-the-YMCA
The YMCA personnel have been trained by Livestrong and understand our limitations and potential problems resulting from treatment, etc. One of the first conversations with my trainer today had to do with lymphadema, so I was impressed that they know their stuff.
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Going in for #2 Herceptin today and first visit with RO on Friday - wish me luck!
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Good luck achpurple!0
