January 2013 chemo group

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    MandyNJ, klaudiak, and if I've missed anyone new to the thread, Ciao bellas! This thread rocks with some awesome ladies! We are all warriors, so let the games begin.

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Lauren, I'm triple negative as well. It seems that there are a bunch of us that are. Which I think is great!!



    I think we should all post pictures of our pixi cuts, Mohawks, and or shaves once we do it. I'll post mine. Anyone else game? :)!



    Happy New Year's Day!!

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  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Wow, no salons!  I never heard that.  My husband is a hairdresser, and I'm always in the salon for one reason or amother.  Guess I won't be there every couple of weeks for color any longer : - ) -- BUT my NAILS too????  I go for gel fills every two weeks and  pedicure once a month.  I don't want to stop that.  What's wrong with salons?

    So much to learn . . . I haven't done any preparation for anything yet.  I'm sure I'll catch up, since I'm supposed to start chemo possisbly next week. 

    About wigs - I heard there are places you can get them for free.  Do you know where/how and if they are a decent quality?  I want to find one that you can't tell, but I heard they are expensive.

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Lauren, I don't know for free, but call your insurance company. Tell them that you want to know about benefits for a cranial prostesis. Many will cover the whole thing, or 50% or something. Every little bit helps. 

    And, I'm going to miss the pedi's too. A couple girlfriend's and I do a coffee/lunch/pedi day every month for years. Sigh. So much to learn. 

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  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Is it just going into a salon that is not allowed?  What if I had one of the nail techs come to my house?  Wouldn't that be permitted?  Maybe you can move the coffee/lunch/pedi to someone's home . . . and I can have someone come to mine.  I refuse to let me knows come off.  I bite them if they are not kept up; then I'll first feel like crap with no hair AND no nails.  I'm more scared about my eyebrows.  I can always get false eyelashes, but I cannot stand tattooed or penciled eyebrows.  Any known remedies for that?

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Lauren..... I like your thinking! Someone to ome in home. We could definitely do that..... if it's allowed. I'll be waiting to hear more about what the concensus is around that. I don't bite my nails, but am a certified 500 hour hot yoga instructor, I know that (and this is going to sound silly) that no one ever looks at my hands, they always see my feet. That's why the monthly pedi's started. LOL! I don't teach any more as it doesn't allow me enough time for my practice, but still.... people see the toes. LOL! Keep me posted if you hear anything about this and I will too vice versa. 

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    I have also heard about soaking your fingertips in ice water. The theory is the vessels constrict and the chemo meds dont get a chance to damamge the nail beds. or thats what I read.

    I will get my port tomorrow. It is the one that protrudes. They never said there was a different one. I am going to google it. I haven't heard of the gel polish protecting the nails, but, it makes sense. I had gel polished nails before and they made my thin nails very strong. I liked them much better than acrylics. They looked natural. Maybe I will get to use my salon gift card after all.

    I start my first round on Friday. I am nervous and getting a little anxious. I think it's just me wanting to get this started so I can be one step closer to being finished. it's like I want to fast forward to june and be done with all the treatments. Patients...

    Does anyone know how I attach a picture to a reply? I want to try to put up a before and after picture. I found a blog with a girl that did that and it made me feel better about cutting my hair. I might even post the mohawk one...lol.

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  • russell33
    russell33 Member Posts: 48
    edited January 2013

    Hi ladies, I'm confused about not being able to go in the salon.  Is this while we are doing  chemo?  Is it because of the chemicals?  Just curious, so I know to go get a pedi before chemo starts.  I know that will make me feel better.  

    Hope everyone is having Happy New Year!  Anne

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  • Laura5133388
    Laura5133388 Member Posts: 577
    edited January 2013
    Skimommi and Amrdbit, This is me, back row third from left, 3 weeks after my 6th and final chemo. Do they work? See for yourselves. Yes, they are expensive and yes, you really do have to baby your hair during chemo and for several weeks after. Some ladies might think keeping their hair is not worth all the effort of cold cap therapy, and that is their prerogative. It is a very personal choice. For myself, the caps were well worth the time and money. I could not stand the thought of everyone knowing I was sick, so being able to look like myself throughout chemo was invaluable. I just want every women to know that they have a choice in dealing with this very public side effect.

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  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Hi Laura -  In a nutshell, what did it entail, and how much did it cost?  Did you lose your eyebrows and eyelashes?

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  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Also, how did you post that picture?

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited January 2013

    @lauren15...oh it's the same thing. Some drs call it triple H neg (I guess for hormones) and others have called it triple negative.



    It's good to know other people with it. In real life, I only know one person with it so its helpful to compare with her as the treatment is different from other friends.



    Also, I thought I was getting chemo first but my surgeon said no, and I was told its because of my age and the "need to move." but it was info overload so I may be forgetting a detail or two.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Hi Girls~For any of you starting Adria/cytoxan, I just had round 2 on Friday 12/28/12. So far, I've had NO nausea with either treatment.



    Today is my first day off steroids, and I can tell my taste buds are fading, but I had a grilled Beefy Nacho burrito & a strawberry Fruitista from Taco Bell earlier and could taste it just fine. I usually lose my full taste for about 3 or 4 days. I try to find foods & drinks that are a little stronger tasting.



    I take an acidophilus pill every day, eat a yogurt, and rinse my mouth at least 4 times a day with 1 TBS of salt mixed with 1 TBS of baking soda in a quart of water. That has kept me from getting mouth sores or thrush. The dentist did say to brush at least once a day with fluoride. I brush the rest of the time with the mixture.



    Don't be surprised if several days after chemo ( for me it was day 6 ) you may get a kind of depression. Hunker down and ride it out. It's just steroids leaving your system. It only lasted one day for me. About day 7-8 I felt like I peed 400 times. Also steroids leaving the system. I was very cold days 7 & 8. No fever, just very cold. I stayed bundled in my robe, socks, & blanket a good bit. By Saturday I was back to my old self.



    I'm fortunate, that my onc only has me doing chemo every third week, so I have an extra week to bounce back.



    You may feel a bit foggy for a day or 2. That will pass quickly.



    If you feel like your vision changes a bit, DON'T PANIC. It will go back to normal in a day or so.



    I pray you all have minimal SEs.



    Blessings

    Paula

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  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Mama k16 - that comment about the hagen daz from your mo was totally insensitive - he sounds a bit to arrogant for my likes- but I am sure he could be a smart dr too !!

    Yes - I was told by several veterans to ice the nails during the taxotere infusion - so I did my fingernails only this first time and kept polish on them - they seem done so far . It gets progressively more important - so I may do my toes next time too - burrrrrr

    I am a bit perplexed why most oncologists/ cancer centers do not have a " shopping

    Iist " of remedies for Pre- chemo . Mine did not so I may make it a goal of mine to make sure they develop one for other patients - so much better to be prepared than suffer .

    The vitamin d supplements sound great but right now I am letting my liver process these toxic chemo drugs before I make them do more work ! Will check out dr Shultz amrdbit !!! Thank u all !!

    The only other problem I am having now is an itchy scalp and other places ( tmi sorry )- could that be Pre- hair fall out symptoms ? Lol !!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    russell33~I was told by my onc, that its ok to go to a salon, but to take your own sterilized tools with you. That way, you know what's being used on you.



    I have a friend that I met through BCO, who had Taxetere. She didn't do anything special to her nails. Icing or anything. Her nails just looked like she had a French Manicure. Of course, we're all different.



    What kind of gel polish are you ladies talking about? And where do you get it? I'll be getting taxol, which is also hard on nails, so I'd like to try that.



    Blessings

    Paula

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  • whitetiger4873
    whitetiger4873 Member Posts: 1
    edited January 2013

    I have been going through the forum since I found out that I had breast cancer. You guys have helped me understand alot and helped me get through alot. I get my port put in tomorrow and then I start my chemo on Thursday. I want to thank you all for the information that you come on to give everyone. It makes this process alot easier.

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Is anyone using the dark nail polish?  I plan on painting my fingernails and toenails dark navy (I bought three different colors but the navy goes on best - and fwiw, I never wear nail polish) this evening.

    Chemo starts tomorrow unless my MO decides to delay it because I've had a cold/cough for the last week. 

    I feel like I did as a little kid - standing on the end of a diving board, holding my nose, closing my eyes and getting ready to jump. 

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Laura5, you look great in that picture!! Congrats on your beautiful family as well! I thank you for the information. I'm going to have some questions for you if that is ok, as soon as my youngest son and I finish watching Silence Of The Lambs. I'm watching and thinking about what to ask. SO many questions running thru my head. :)!

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Soteria205 The gel polish is the stuff at a salon. They cure it under UV lights. Up here in Rochester, it would be like $30 every 3 weeks. Thanks for the info on AC chemo. I start friday every 3 weeks x4. So glad to hear you had minimal SE.

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Hi Lauren15:

    Regarding eyebrows, I've talked to a number of ladies who successfully kept their lashes and eyebrows using Latisse. You need a prescription and it's not cheap but a one month supply can really be stretched using just a drop on a small eyeliner brush and apply to the lashline and then pat the remainder on the brows.  If you do lose lashes and continue with (or start even) the Latisse, the growth cycle is supposed to be very fast.  I plan to use this and will also be using the cold caps.  I feel confident I'll have good results based on others I've spoken with.

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  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Welcome whitetiger4 and all new to this thread - just went out for 3 mile walk ( I am post TC treatment 5 days ) and feel so much better ! Not quite the energy I normally have but I preserved . I too heard about Latisse - it was originally developed as a medication for people wih glaucoma but they noticed it also made your lashes grow -it is a topical solution and u have to be careful when u apply it as it can also discolor some people's eyelids per sites I looked at . I too will be asking for a prescription !!



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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    You girls are busy today! LOL I was told no salons (at least for nails) due to the germ factor. Also, if you do continue to get manicures I heard that you should not push back nor cut the cuticles. That can be cause for infection. I would love to be able to get my nails done and you have brought up a great idea, such as looking for a mobile salon.

    Interesting as it may be, my onc is participating with a local non-profit to help spread the word and get people trained on how to properly treat people undergoing chemo. Apparently massage, facials and such take on a whole new meaning for us.

    If anyone hears, learns anything about continuing to get your nails done please share! I'm not thrilled with the idea of chilling my fingers and toes. Sounds like I'd need to sport my under armor to the infusion center.

    Paula, you can get the gel polish and uv light at places like Ulta and Sally Beauty supply. I spent about $100 on the light and all the supplies, which some say is the low end. Apparently there are more expensive lights that work better.

    Interesting on the Latisse. I've heard of that, but not about using it during chemo. I'm using Brian Joseph's myself. Will be interested in whether it works and will keep all posted. As for the fake lashes, I would really be interested to find anyone that has had luck with those. Same as with everything else we have chatted about, I've heard that the sticky part can be irritating to chemo skin.

    Ciao bella!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Oh, and Sandra you are my hero . . . three miles in less than a week post chemo?

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  • Grace533
    Grace533 Member Posts: 18
    edited January 2013

    When do you put the latisse on during the chemo? Do you put the eyeliner across the lash tips or what? Then do you put on eyebrows.. I have it but read some bad reports about it and was afraid to use.Has anyone use it?

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  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    I think we all need to ask our individual drs about the Latisse . It would be a nice option if needed !

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  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Good night everyone!  I'm getting my PET Scan tomorrow and hopefully the MRI.  Please pray for me that it hasn't spread.  I could really use some positive news.  If I see my MO, I'll try to ask him a ton of questions.  Does anyone have a female MO?  I wonder if they are more famiiar with all the girlie questions we have.  I wonder if the men can appreciate that we want to keep our mani/pedis going - haha.  Good luck to everyone who starts chemo tomorrow!

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    I'm going to def ask about the lattise just but I didn't lose my eye lashes during chemo the first time around. (All other hair was gone, except my eyebrows.... those just thinned out.) My MO is a woman, she is great about answering questions, but..... I sure wish she was a little more warm and fuzzy. She is definitely not warm and fuzzy. LOL! Very buisness like, like my last one. 

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Deb, skigirl, and skimommi, I am definitely posting my mohawk and rocking-the-bald photos. And Deb, I love it when you say y'all. I grew up in Dallas, and everyone up here makes fun of me for saying it. :)

    MamaK, ciao bella! I hope your port placement went okay. I'm planning to keep working, too, although I'll be calling in a sub on the bad days (I'm a high school teacher, so no working from home for me!). I guess a lot of us will find out what it takes to make that work. 

    MandyNJ, ciao bella! I'm so glad you have a good support system, and I think the hair cutting party is a great idea. My mother cut her long hair (not because of cancer, just because she wanted to) for the first time when I was 8 years old, and my sisters and I were so upset! I think we would have found it less scary if we had actually seen it happen. Oh, and I loved your comment about your older brothers teaching you to fight. Be afraid, cancer! Be very afraid!

    Lauren, I hope you had a wonderful anniversary celebration. I'm puzzled about the non-protruding port, too; I've never heard of that. Mine doesn't protrude nearly as much as some I've seen, but it's definitely visible. Also, I have a female MO. Even more, she also had bc 5 years ago. What irony, right? But if ever there was a person I felt confident asking ANYTHING about bc, it's her. I'm so lucky! She's pretty no-nonsense, like Deb's, but I like her that way. I'm pretty sure she'd do a bit of warm fuzzy if I asked... :) (Also, if you want to post a picture, just click on the button with the tree on it at the top of the reply box, the one right next to the smiley.)

    whitetiger, ciao bella! I hope your port placement goes easily for you (it should be a piece of cake!).

    LeeA, I hope everything goes well tomorrow, my triple+ sister. I will be sending LOADs of virtual hugs and good thoughts to you all day. Don't be afraid to take the plunge; just remember how awesome it felt to pop your head above the water afterwards and know you had done it!

    hope, ciao bella! Do you start chemo soon, too? I've heard some things about Latisse, and I'm hoping my insurance company will cover it. I've never known anyone who used it during chemo, though. Did the women you were talking to start using it from the beginning, or did the start only if they actually started to lose their lashes?

    Sandra, way to get your walk on! I'm hoping to do the 3-Day in September, but if I'm going to pull that off, I'm definitely going to need to keep moving through treatment.

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Bryona,

    When I go home to Boston, everyone always wants me to get my inner Texan on when I talk. Lol! But I so know how that goes. Lol!



    I was teaching middle school the first time around. My chemo was everyother Thursday, so I'd always take the Friday the day after treatment off . By Monday I was always ready to go back. Teaching also helped to keep my mind off how I was feeling. I'm a SAHM now so I'm Gojng to have to figure out something else to keep my mind settled.

    Have you one the 3 day before? I did it in Dallas about 6 years ago when it was held in June. It was just a tad hot. Ha ha ha! Thankfully they've moved it to oct here in Dallas. Maybe ill think about doing it again! We'll see. It was an amazing experience!!

    Ok y'all, I'm off to bed. I've done nothing at all today except lay on the couch, so I hope that doesn't speak a ton about my year to come. Lol! I'm usually so active. (Dreams and middle of the night thoughts of cancer cells infecting my body again before I start chemo in a couple weeks have been keeping me up all night. I don't think I've slept in 3 days. Sigh. Here's hoping for a good night sleep. I'm exhausted! Sweet dreams everyone!

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Bryona - thanks for the words of encouragement!  Took a two mile walk today and despite having battled a cold - felt better because of the walk.  I hope I can keep it up during chemo...we shall see!  

    You were right re: the PET Scan...but even though I got the call that it was okay, I'm STILL nervous about it.  Crazy cancer.  Coloring all my thoughts it seems.

    Lauren15, you are in my prayers.  Good luck tomorrow with the scan.  I just read a great word for it on another thread:  scanxiety.  ((hugs))

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