Starting Chemo September 2015; join us!
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For all of you thinking that you're somehow damaged or flawed because of a BRCA mutation... that's total bullish*t. We ALL have mutations of genes, it's just that the vast, vast majority haven't been identified yet! We just happen to have a few that we've figured out early in the process, like breast cancer, Alzheimer's, and a few others. But all of us have these things and there is nothing lesser, defective, or any less worthy about it. And if someone thinks that's a deterrent to marriage, I joyfully volunteer to kick him or her in the privates. So there.
I just made reservations to take the family on a ski trip for Christmas. Heaven knows I don't want to add more stuff to our house, and this philosophy went very well last year. Experiences are worth more. I may not be able to ski from sunup to sundown, but we have a comfortable enough room to go rest when I need it, and I want the children to have memories more than things, especially this year. And with the last few miserable days, I desperately needed something to pin my sights on and look forward to. Hubby wisely kept his mouth shut when I asked him which week he'd prefer rather than if he wanted to do this. LOL
As an FYI, I just scheduled a transvaginal ultrasound tomorrow with an OB/GYN. Apparently the abdominal CT in August found a 2cm x 3cm mass in the endocervical canal that needs follow-up. My MO's office kept forgetting about it but I'd really like to get this thing positively identified. Please send prayers or good thoughts that this is nothing. I will admit to some level of anxiety about it.
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CarolinaAmy-glad you scheduled the transvaginal. Worse to wait. Sending you tons of positive energy
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CarolinaAmy- positive thoughts going your way. It is good that you are getting it checked out now.
I wanted to comment on the make up/label topic. I am more aware of what is in my cosmetics. I want to research some of the chemicals and if they actually interfere with Tamoxifen. The thought is that they have endocrine disrupters in some products. That being said I don't understand this whole cancer thing. There's people who do all the "cancer causing things" and never have a problem. I had a genetic panel done and it didn't come back with anything. I hate wondering why I got this or what caused it.
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CarolinaAmy ((hugs)) It's a difficult time, for sure, but we're all pulling for you.
SouthernCharm..This is mine. http://www.headcovers.com/classic-band-hairpiece/
You can search for headbands with wigs for a few more options.
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hugs and prayers for you Grey!
Octogirl
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Hang in there Grey. We're all in this with you.
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Saw Sharma, my new MO. Very nice lady and well knowledged, and liked how I'm not green with medical stuff. First I was in her office to talk since it's more comfortable and personable than being in an exam room. After, she examined me in the exam room.
She knows the meds she'll use on me. Since cancer cells have spread from looking at my sx final path report of 8/6 and I'm very close to the max cut off time for most effectiveness of any chemo regimen, I will be receiving stronger chemicals, which means worse side effects. The ideal is 8-10 weeks max out from sx for starting chemo, any chemo regimen. My sx was 8/6. With all the unavoidable delays, it has put me close to the line. Great.
She knows I'm alone with no help so instead of every 2 weeks that everyone else seems to be doing, I'll be getting chemo every 3 weeks. She says research really doesn't show much of a difference to put me through every 2 weeks of this, especially knowing I'm it, alone. My bff's sister who is near is dying of pancreatic cancer and can go any day now so I'm not bothering her.
Plan is 4 rounds of Adriamycin and Cytoxin = 12 weeks of these. Then right after is Taxotere every 3 weeks for 4 rounds = 12 weeks. So 24 weeks of bliss. After this will be radiation starting 3 weeks after last infusion M-F for 5-6 weeks.
I'm to be scheduled to have a bone density scan and CT scan to see if the cancer is now planted somewhere else as well. CT scan really determines the stage, so while I'm sitting at III for sure. So hearing this made me nervous, especially with being so close to the cut off date of most effectiveness of chemo.
I should have been in chemo much sooner. But the drains were in for 5 weeks and shortly, the change in MO, and this infection I've had for 3 weeks now. Glad it happened before I started chemo or it'd be more misery.
After Sharma's appt (which was 2 hours, very thorough and good) I sped to Dugoni the surg's office for them to see that infection is looking good, just have to finish off the last IV bag Thurs pm. They knew time's ticking on getting effective chemo txs so I got worked in for tomorrow port installation sx. Wow. That was fast but let's get it over with. Sx is 11:00 and I come home around 4:00. Then on Fri I need to get labs drawn and the picc line pulled out at the infusion center.
I also need to have their chemo teach which I think is next Thurs, but not confirmed yet. Oh and next Fri is post op of this port sx. I think that's it. Crazy how this stuff goes. If I had written in pen in my planner, I'd have to buy a new one with all these zillion hiccups and changes that have occured!
Oh and how can I forget.... I chipped one of my molars nicely today. No pain or discomfort but it's pretty exposed. So I have to call my dentist in the am to see if this can wait until after chemo or what since time's ticking. My luck. One thing after another, it never stops. I was wondering why something soft was crunchy. :S
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Hi all: I made some edits to my original post to shorten it...I know the list is getting long but I just didn't want to take out any names of all you beautiful, strong women. All welcome here. It isn't pretty, but it is shorter. I also added in newcomers; welcome to the group and I hope I got everyone. Hugs to all of you and to the lurkers too!
As a reminder, try making this a 'favorite' thread on your profile: it should take you to the bottom where you left off reading, when you sign in. At least it does for some...
I am feeling better tonight, energy is back again. Just in time for baseball...Lindy, I am going to root for the Jays once the Cubs choke. :-) although Cubbies are looking pretty good tonight!
Hugs to all!
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so many things to comment on and no energy. 3rd chemo today, uneventful but I am pooped!
Good news, my WBC was down to only 800 last week and thanks to Neulasta and my MO said, my diligence in consuming protein by WBC was 11.4 today! yahoo! after round two it went down to 1.4 and then back to 8.2. Ladies please do everything you can, Boost, protein powder smoothies, steak, chicken, just whatever you can stomach to get your protein!
along to diet lines, I have done a great deal of research and found an EXCELLENT, highly acclaimed book that came today. Not only great recipes but specific solutions for all chemo SEs as well as specific foods and spices to fight recurrence of bc. Yep, it means some changes but to me (I thought I was a healthy eater) I will do WHATEVER IT TAKES (my attitude in life) to not have this nasty disease return!
here is the book I bought on Amazon Prime.
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Artista, I am glad you are on track. We will be here for you. My chemo is every three weeks, FWIW. I like having about a week when I feel good (week three).
Octogirl
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Joining the halo crowd thanks to you SouthernCharm and your cute look. I did the bob and ventured out a little with the Ginger Spice color. I too love my hats, have about a doz. and way too many scarves. I figure I have about 6 months of no hair or who knows what hair so I have lots of options!
I loved the rants and whines today. So many of you said EXACTLY what I was thinking too. And isn't it wonderful we have a safe and understanding group of friends to do that with!
Twiggy, love the motto idea!
Question, has anyone had a random bright pink circle appear on your breast MX one, or chest? mine is the size of a quarter, stayed the same for two weeks, PS and MO don't know what it is, slightly tender, no heat but it does seem strange. It is about 1/2 inch from my TE fill valve. Just wondering.
Bigs hugs and lots of luv to all of my strong and beautiful ladies!
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Thank you Octogirl. I just got scared knowing I am stage III, coming up on the max time you have to get the max benefits of chemo, and having all those scans ordered. I'm so behind on getting a move on chemo and now with a big chipped molar, jeez. Don't have another shoe for it drop now..
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arista, uuuuuugh dental work. I was already behind and failed to get this done before chemo because it has all gone so fast, I couldn't handle anymore. I have a mercury filling that needs to go and a ton of dental/gum problems from a former eating disorder. I dread the dentist like the oncologist. Thinking about you tonight.❤
Grey, welcome to the rodeo, glad you joined us.
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Carolina Amy - praying for you, your daughyer, and your testing. Also, can you fit a family of 5 in your luggage for said ski trip?
Game on! Hoping you all get some good sleep tonight.
"Everybody's got a tale of sorrow, try to forget it, but I can't let go." J.J. Grey
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Yeah Cajunqueen, nothing like issues cropping up right after you are told you need to get the port sx done tomorrow or surg's partner is on vacation for a week (my bs is gone till 10/21- how dare he...). Then tryng to get me worked in for scans and finally chemo as the time is ticking loud on that. I hope he says I can skip it for now but this thing is a big dent and I'm pretty surprised pleasantly so that it didn't get to the nerve or ouch! It feels weird, very mild discomfort to where I"m not reaching for tylenol, and I'm careful about food over there. But something tells me that if I don't do some kind of a patch job before chemo, it'll feel worse or it could get worse.
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Artists - I agree with Cajun on the dental work, yuck! I had to get a cavity filled the day before my first chemo. I hate dental work....I have a mouthful!
Lila - I just bought that book today! Glad to hear it's good! I also bought "Anti-Cancer." I need to make some serious permanent changes to our eating habits in this house.
I'll be back tomorrow, probably during chemo. Night all!
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Awe grey, thank you. Wish we lived close so we could hold each other's hands but we still can virtually. I'm happy for you that you have your plan and date. Although no one looks forward to that date, it still would be a relief at least for me to have a start date. You family makes me irate. Might have been better off not even telling them rather than listening to that bs esp if they don't support you. My fam doesn't know except bro but not because they'd talk like your fam does but they would be anxiety over load and stressed more than me. They'd be in my hair even though they aren't near calling and it's not easy to deal with so many people, repeat the story 100 times, answer questions you don't have the answer to, etc all the dang time. So they are in the dark and only bro knows. He's the only cool one. I give updates and he gives support and that's it. With the fam, I'd need 10 rxs for anxiety pills just to deal with them. So, no. It's just me and 2 bff's that know and that's it irl. Now online I have online friends on other message boards that support me by calling or texting. Don't have to meet people in person in order for them to become good friends.
Best wishes to all and I hope to be joining you guys in chemo land in maybe a couple weeks. Jeez. Who knows.
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octogirl: "White coat hypertension" is a proven fact --- some people's BP goes theough the roof if someone else measures it. Do you think measuring your blood pressure at home might make a difference?
DLCygnet: re: constipation --- because I have to take constipating tricyclics and sometimes opioids for my cancer-and non-cancer chronic pains, I had been using Omega-3 as constipation preventor. Oncologist now forbids Omega-3, so I've been using Pegorion (other brand: Movicol; chemical name: macrogol) with success (a powder you mix into a large glass of water). It stays within the bowel and binds water to itself so stool stays soft. I don't know treatment for fissures, but my oncology nurse recommended newborn baby hypoallergenic "bottom wipes" after BMs to help prevent them --- softer than toilette paper, and moist. Only negative: can't flush them, have to put into the trash
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Because I'm almost 60, my docs refuse to test for BRCA. I didn't know it also raises risk for prostate CA. My husband's brother has that; my kids are both boys; I'm going to ask again for the test
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Annie, thank you so much for your picture post a few pages back. Really needed to see that today.
So very sorry you, Amy, Grey, and so many others are having such rough times right now. I almost feel guilty that I feel mostly over the worst of the SEs from last week's round two (except headache and burning, numb finger tips). Wishing everybody healing. Lots and lots of healing. ((((hugs))))
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greytmph2 I am with you. It is tough going through this with less-than-ideal family. Mine has been more supportive, but not always ideal. Hang in there. You're going to get through this.
I too HAAAATE the pity-look. I got it at the hospital reception desk from a volunteer of all people. I wanted to slug her.
I love the idea of a survivors' cruise. We're gonna live through all the SEs, through all the insensitive assholes, through all the invasive tests. There's a brighter side across this dark channel. We're gonna make it.
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Annie - I am SO close to you in treatment and only one day apart. I am so sorry for your Nasty-lasta SEs. Yuck. Agree that the red pee is quite disconcerting.
Hang in there - your sense of humor is amazing and inspiring. I agree: this entire class should go on a NO-PITY cruise together next year, slather ourselves in sunscreen and have an all-healthy, all-baldies drunken spree! - Lisa
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Maybe we should just go to Vegas.....cruises worry me. With our luck, we'd all get Legionnaire's or something.
Ok, I guess I am in too dark of a mood. But seriously, you know, what happens in Vegas...
Hugs to all this am
Octogirl
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ok, I was feeling too dark for my last post. But maybe we should just head to Vegas. Soon. I do need an escape also.
Hugs to all
Octogirl
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Hi Aritista928 Im on a three week chemo cycle of a strong chemo and it has been manageable. You manage to get pretty much a two weeks of feeling good. Chemo is no picnic but the meds they give to help relieve side effects are great. Now did someone mention Vegas I say we do it Hangover Style☺☺☺and yes I would come all the way from Perth Australia the worlds most isolated city.
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I'm up 10 TEN pounds since monday! I'll have to drink a gallon of water today. If I could skip nuelasta I think chemo would be bearable mostly. My bruises aren't healing. I'm swollen all over. I can't get out of bed mostly. I know I have no cause to complain so much. Some of you wonderful ladies have so many more mountains to climb than I. But truly this is the hardest thing I think I have ever lived through. No one around here gets it. How could they possibly understand? I had a friend from back home who had BC back in 09. She has been avoiding talking to me since I was diagnosed. Then she says to me that I barely have cancer and should suck it up. How does anyone barely have cancer? I know I'm rambling. I can't pull it together today.
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Or you all can come to Miami! Great deals at resorts here. Vegas overwhelms me 😜. Love the idea either way!
Tessa: that's crazy that your doc won't let you test for BRCA after 60. My mom tested at about 66 as positive for BRCA2 (after her older brother tested positive) at a major cancer center no problem. She went on tamoxifen, got a hysterectomy and gets regular 2x yearly MRIs and breast checks and mammograms. She's 73 now. I my sister and I both tested negative and I took the 25 gene panel before my surgery and was negative for all. Just that freakish 15% who have a family history but are negative and still get.
Annie & (I can't remember who else): when you had to the reaction to the 2nd infusion. Did you feel really vulnerable after? Last night and this morning I feel so aware of my brwathingerc. Of course the steroids jitteriness probably not helping
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AnnieB: there is no such thing as barely having cancer and your friend was way out of line. I wonder if this is raising bad memories for her? Stick with folks who can provide support. I am sorry the neulasta is so hard for you...
Octogirl
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oh Annie! You're not rambling! That is sO hard! A friend of mine posted on Facebook last night about the big cancer industry really causing cancer deaths via surgery, chemo and radiation and that you really should only do alternative treatments. I feel so hurt that she, who knows my choices, posted that
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jabe after the reaction I thought everything I took was going to kill me. It was almost a week before I shook myself out if it.
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