Starting Chemo September 2015; join us!
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Valerie, gorgeous!!!
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the magic mouthwash is gross and leaves your mouth and throat completely numb like a dentist trip.
Heartburn in the throat I used nexium and Alka seltzer heartburn chews.
My hair stopped hurting today. I'm going to hold out shaving it until the little traitors jump ship!
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Packing up and getting ready to start chemo tomorrow. Doing neoadjuvent TCHP. 6 treatments, 3 weeks apart.
Any tips for your time there, let me know...
Fingers crossed
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AnnieB43, I go back and forth, but I think I might follow your lead on holding off on shaving!
Long day today, so hope to post more later, but in the meantime, I hope everyone is feeling ok. I found something I can stand to eat tonight: roasted vegetables (sweet potatoes, red potatoes, leeks, carrots) with two fried eggs on top. it almost tasted like food...
Hugs to all!
Octogirl0 -
Terrible news today! My MammaPrint results came back and I am Her2+. Now MO wants to start over with targeted therapy and do another around of chemo (6 rounds + one I already did = 7 rounds). Which means chemo until after Christmas. I just sobbed and sobbed.
Also, I am in the highest category for recurrence at 28% likelihood in 10 years. Reigniting panic/fears that I won't see my kids grow up. Anyone else this high?
Please someone advise me experiences with perjeta+herceptin+taxotere+carboplatin. So worried.
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After going home from the ER at Tues noon, I just continued to get worse (headache, sore throat, and now also nausea that didn't leave with primperan. Fever spiked to 38C late evening, I waited half an hour for another reading, also 38C. So back to the ER for the third time. Scared I'll catch something from the coughers in the waiting area -- or the tech who drew my blood, coughing with no mask...
But labs showed my graulocytes were crashing,,infection focus still unknown, so they admitted me to the Oncology ward right after midnight. Gave a smaller dose of dexamethasone -- which partially eased my headache enough that I actually slept 5 hours semi-sitting, head part of the bed propped way up. Nausea also eased, and for the first time in ages I felt hungry and actually enjoyed my porridge and berry compot. I got a smaller dose of Dex in the morning, but headache got worse again. Trying to convince myself if it's just a SE of chemo, it's rough, but can slog through this --- for a chance to kill thus cancer and live.
So I guess I "win" for fastest hospital admit after first round of chemo
Hoping everybody is feeling better today; I'm still working on that.
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teacherhikermom: so, so sorry to hear that! HUGS!!! Is the risk what it would be without the chemo? I hope some of the other bco sisters can help with your questions, it is my understanding that the new targeted therapies are very effective. I hope you are able to get the answers you need soon.
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I believe Benedryl was mentioned here to help sleep and help with I forget what SE. I would think the liquid elixor would be more effective and faster as liquids go than caps? Which are you using those who are and for which SEs? TIA!
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Lidwien welcome! It' such a nice group here, you'll fit right in
Lila-Claire you're gorgeous!! I'd love to have beautiful white hair, I'm gonna rock the salt and pepper when mine is short.
AnnieB - have you tried peroxide to gargle with? My Mom used to get thrush when she was on prednisone and that is what she used.
edwsmom - that is the same regiment I am on - take a warm blanket, socks, pellet ice to suck on during the T and C parts, something to eat and drink, phone or tablet or books to pass the time {hugs} it will be a good day, a first step to fighting the cancer out of your body!
OCtogirl - mmmm roasted veggies! I need to try that! My taste is gone and I'm just eating to stay strong and hydrated.
TeacherHikermom - {hugs} to you too hon, my last treatment is supposed to be 12/23 but we'll see. It will suck to be sick for Christmas but then I'll be done. I'm on TCHP and my MO was excited about how well the targeted therapies work. I already feel a difference, no more pain and the tumor feels smaller even after just 1 week. Have they mentioned radiation? I'm in for 6 weeks after surgery. Take it in, it's a lot to process especially when you had a plan in place.
tessu - I'm so sorry this is hitting you so hard! I hope your SE's subside and you start feeling better soon!
Grey - You are so much stronger than you give yourself credit for! Get the answers you are comfortable with or find a new MO. Enjoy your vacation and gather your energy for the fight ahead of you!
Nite all! Good thoughts for a great day tomorrow!
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Sounds like you all are making progress. (I want to say YAY but that doesn't seem like the right comment!)
Teacherhikermom- I am so sorry for your news. Will send the most positive thoughts I can muster your way!
Mom2boo - I'm in Scottsdale but I got my wig in Illinois when I was there this summer. It is a Jon Reneau, Thanks for all the positive comments everyone.
I also got the Brian Joseph cream for my eyebrows and lashes. I hope it works. I got cold mitt(s) from eBay thinking it was a better deal than the $95 dollars on Amazon. It was not! There was only one and I don't think it's really the same thing. I'm most worried about my nails. Has anyone had any issues with their nails? I have gel fills so I'm hoping that will help.
Lila - your head looks fabulous!
I get my port tomorrow. I guess this means it is really happening.
Hugs to all of you! We can do this! You are all awesome!
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Have any of you been told about the Canadian protocol for radiation? My docs mentioned it as a possibility. It is a three week schedule instead of six and they say just as effective.
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greytmph2: the Emergency Dept is scarey only because first you have to sit in the general waiting area among all the coughing etc people and wait until your number is called, then the treatment area doesn't always have a free protective isolation room. And last visit some of the staff themselves were hacking and coughing -- without wearing face masks --- including my blood drawer o_O --- sorry, but that should be illegal!
The Oncology Ward itself was a surprise --- clean, quiet; the nurses were welcoming and friendly, brought me jogurt and juice even though I arrived there after midnight. I will never dread being admitted there again. Got to go home already Weds evening.
My fever finally dropped Weds morning and my temp has finally stayed normal for 24 hrs, so I am hoping this "crisis" is over. Still fighting headaches that immediately increase if I try to lie flat in bed (thank god for the motorized bed we got just after my surgery) and also somewhat if I walk my dog more than a block or so. But the docs say they're just a Taxotere side effect, not anything dangerous --- AND they are allowing me to go back to my usual pain meds, tylenol and tylenol-with-codeine --- for most of each cycle, except a couple days before and 4 days after the chemo, when I have to use the new OxyNorm, which makes me weird. (My liver enzymes jumped some, hence the initial ban on all Tylenol, but they'll test those before each chemo dose and think I'll do fine.)
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someone above asked about "sunburn face" ---- I got that right after chemo for a few days, face and upper chest --- not sure whether it was from the Dexamethasone (night before, then morning and evening of chemo) or one of the chemo drugs (Herceptin, Taxotere). Might actually have been the Dex, as I was given a smaller dose Tues night and Weds morning, and by Weds afternoon have mild "sunburn" again. Doesn't hurt like real sunburn, just looks red.
I still have throat pain but no mouth sores.
I've been swishing my mouth with salt water (1/2 tsp per 500ml), but could someone please post the recipe for the Baking Soda Mouth Rinse? Thanks
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teacherhikermom: I'm also HER2 +, also ER+/PR- with "very unfavorable" other kinds of markers I don't really understand. They're goving me Herceptin for the HER2, and that infusion gave me no problems whatsoever.
Hang in there, we'll fight this together! (((((hugs)))))
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Tessu I've seen a couple variations of the baking soda rinse. The one i remember right now is 1 cup warm water 1/4 tsp baking soda 1/8 tsp salt. I started getting a sore area at the back of my throat yesterday. By last night i was really hurting. I started swishing with the mix and it is slightly better now.
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Hello my friends,
Thanks for kind comments about my bald white head! It's hair, it will grow back. white, curly weird but I will figure it out. thank goodness it's OK to use hair dye after chemo.
teacherhiker - I join you with Tessu as her2+, I have an aggressive and wonderful MO with an intense chemo plan. after my 4 AC dose dense treatments (i've had one) then I go weekly for 12 weeks with Taxol with every 3rd week adding Perjeta and Herceptin. so yep, all through the holidays too. But if this will kill those nasty C dudes I can handle it. be strong my her2 buddies!
Tessu - I hate the ED visits and hospital stay for you! I do hope things are getting better. My WBC (white blood cell) count dropped yesterday from 4.8 to 1.3 so I too am freaked about germs! Luckily I work from home so can avoid most crowds for the next week until Neulast kicks in to build back the cells. But I guess the germ thing is always going to be a problem for all of us.
Greytmph - I agree if you are not comfortable with your MO find a new one. Mine is wonderful. She is smart and kind so I feel real good about my plan. wishing you the best!
octogirl - love your roasted veggie idea with eggs!
sailor girl- I have gel nails too so hope that will help but I've also learned and am trying, Tea Tree oil in a base of coconut oil rubbed on cuticles and all around might help. I do my fingers and toes 2x day with this mixture. I hope you port insert is an easy process for you!
Be brave my lovelies
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Lila-claire -you look beautiful. I only hope I look as good Sat after my buzz. The shedding is annoying and I am so ready.
Teacherhikermom -so sorry about your news. A 28% reoccurrence sucks. I can't have a onco type or mamo print as a TN but my MO told me my reoccurrence as a TN is 30% (without chemo).
LindyC -the mild nausea eased after day 5. It was only in the am from 8-10. My hair didn't really start to clump out until day 11. My MO told me yesterday that it goes on AC between weeks 2-3. Oh yeah that and I will go completely bald.
AnnieB -I hope you feel better. Yuck on the thrush.
tessu -feel better & hang in there.
Octogirl -like you I keep trying different foods. It's easier to experiment on my off week. I also find that I can taste strong flavored like spices, vinegar, garlic, lemon, and pickles are my go to to kill the dry mouth. I almost cried on Sunday nite when I ate a fresh chocolate chip cookie and could actually taste it (I'm a chocoholic).
twiggyOR- I read on the July or August board to put 1 tsp baking soda and 3/4 tsp salt in 2 pints of water and keep in a container in the bathroom. The post said to use it to swish in the mouth every time you use the bathroom. But only use the mixture fresh every day. I did try that for the first week after with Biotene dry mouth rinse in the am & pm also. That combo helped me.
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sailorgirl15- good luck with your port today.
CarolinaAmy- have an easy infusion today. Let us know how it goes.
SouthernCharm- sorry about the heartburn. Hope you feel better.
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Thanks shopgal. I will increase the strength of my recipe. I've been swishing a lot since yesterday afternoon and I have gotten some relief. I think I will still contract my mo to discuss today.
Has anyone noticed the bottom of their feet? I sat down and rubbed my feet last night and the skin was very dry. I tried to put on coconut oil and socks to see if that will help.
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twiggyOR: at my request, my MO has referred me for an evaluation to see if I am a candidate for the three week radiation protocol. I will be meeting with the only RO who does it in my immediate geographic area soon. It is appealing enough that I've even considered asking for a referral to the big City three hours drive from here to do (I'd stay with friends. The big advantage is that I'd be done with all of this by the holidays, and every day for six weeks sounds like a drag. Not as much of a drag as chemo, but a drag).
However, heads up, while MO made the referral and yes it is as effective (and you can read more on other boards here I think), he did tell me that I may not be a candidate because of my 'voluminous' breasts...(his words, not mine. and he is usually so straightforward. Does the guy in him take over and he just does not want to say, 'look, you may be too large chested'? ) Anyway, apparently, the protocol is more indicated for those who aren't in the 40DD range....I will keep you posted on what else I learn.
Hugs!
Octogirl
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I 've noticed a number of people working from home and it makes me curious what we all do. Please share if you feel like it.
I am an accountant for a wood products manufacturer. My employer is being very accommodating w with me which is a huge relief as I am the primary income for our family. I have a work computer set up at home so I have that option when I'm not feeling well or if people at the office are sick.
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Ok so I'm a scientist by education and I see people posting their percentages so I thought I'd chime in. There's a website called lifemath.net it's a statistical analysis of survival rates with different treatments. It's like the tables they would use for life insurance. Choose to display in pictogram form cuz it's more relatable. Now it's not the end all be all but it gives you solid visual numbers you can get a grasp on. It helped me make a lot of decisions.
My numbers went from a high of 32% down to under 10% with all the treatments I've chosen. According to my research the average woman walking on the street has an 18% chance of getting BC.
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octogirl, thanks for the rad info. They didn't mention it but that issue might affect me too.
The three week option is really appealing to me since I'm trying to work through all this and the closest rad center is two and a half hours away.Charm, I suggest using the baking soda rinse before mouth issues arise. I'm on same chemo as you and had dry mouth right away. Day 6 my mouth really flared up.0 -
a belated welcome glensea and I am adding you to our list!
Octogirl
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Good morning beautiful ladies
Southerncharm thank you for asking, I am at work and I have a busy day with tons of patients, hopefully some of them will cancel and I can take it easy, cannot complain but up to now everything more or less is fine.
All the rest of you ladies please excuse me for not personally mentioning you but I am at work and hopefully will have more time later in the day
Annie I think I am joining you with the candida, I can barely swallow and my tongue and cheeks are coated so I will probably get the Nystatin swish.
Hang in there you great and beautiful ladies, there is light after all at the end of the tunnel
Have a wonderful day, GL to ladies with port placement/starting chemo today.
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RosevilleDawn: also adding you to our list and another belated welcome! Nice to see another Central Valley gal though I am quite a bit south of you. I see you start today, so GOOD LUCK and we will be thinking of you and in your pocket. Please check in when you can to let us know how it goes. You can do this!!! hugs!
Octogirl
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I'm a stay at home mom right now. My working field is natural resource forestry. I was working on water resources and dam removal. Now I have 2 autistic kids ages 4 and 6 and my husband is a disabled veteran. I'm a stay at home caregiver for the forsee able future.
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Twiggy I am a psychiatrist and all day long I listen to people's life stories and this is very therapeutic for me as well, since I cannot work from home. They are also accommodating and every time there is a cancellation instead of trying to fill it in they let me rest in between patients on my beautiful sofa in my office.
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the magic mouthwash is a compound of benedryl, mallox, and lidocain. It really numbs everything up.
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and yet one more belated welcome to Jabe! Putting you on our growing list also. How are you feeling today?
Hugs!
Octogirl
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