Has anyone started a forum for Chemo in Dec 2008?

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  • bobcat
    bobcat Member Posts: 681
    edited March 2009

    Congratulations Elaine - I haven't been on this board for a while but have been following daily.  You are DONE!!!!

    Bobbi

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  • havehope
    havehope Member Posts: 503
    edited March 2009

    Elaine, congrats! Please come back and keep in touch. Today (first Taxol) was uneventful. So far so good. No SE.

    Bold: My MIL is 70 years old. She is strong, we hope she will make it. Thank you for the kind words. My DH is my rock. He is unbelievable. I don't know how he does it.

    Texas357: I am doing the mistletoe therapy. It a complex treatment of injections and vitamins, minerals and detox.

    swest: thank you for the kind words.

    I have embraced the bold group. Thursday I went to the beauty salon and buzz my hair. I had a lot a hair left but it was falling all over the place and i couldn't take it anymore. I don't have a wig, but plenty of head scarfs ( thank god to my Mom, she loves them and now we are sharing them) and hats.

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  • havehope
    havehope Member Posts: 503
    edited March 2009

    mimiwhite            #4  1-Feb            4xTC Laughing

    mmliv                  #4   3-Feb           4xTC   Laughing

    Brenny                # 4  4 Feb           4xTC  Laughing

    lisasayers            #4    6Feb           4xTC  Laughing

    horsercn             #1     9 Feb (TH)       4xAC Laughing+12 Taxol+Herceptin  

    ptjen                   #4   11 feb               4xTCLaughing

    CindaD               #4   12-Feb                4xTC Laughing

    swest                   #4  13 Feb           4xTC  Laughing

    iktracey               #4    17 Feb               4xTCLaughing 

    apfuentes            #4     17 Feb               4xTCLaughing   

    bkokie                #4       19 Feb              4xTCLaughing 

    Texas357           T#4      24 Feb       3xFECLaughing+9xTaxotere  

    Catrenae           T1-T12  26 Feb-14 May        4xACLaughing+12xTaxol   

    Romiles               #4    26 Feb               Laughing

    DrDecker            #4     4 March              4xTCLaughing

    Texas357           T#6    10 March       3xFECLaughing+9xTaxotere

    Mandy1313        #6      10 March          8xCMF      

    Lainey64              #4T  12 March          4xACLaughing+4xTaxolLaughing 

    simvog               T1-T12 13 March-29 May   4xFACLaughing+12xTaxol 

    Grancy11            #5        16 March              6xTC

    LindaBusEd        #6      18 March            6xTACLaughing 

    zuffa                   #6     18 March          6xTACLaughing

    cebula                 #6    23 March             6xTCLaughing  

    Majanumba1         #6   23 March              6xTCHLaughing 

    Bold                    #5    23 March             6xTCH

    sdavis                  #6    23 March                  6xTCLaughing  

    Texas357           T#7    24 March       3xFECLaughing+9xTaxotere

    berrypatch           #6     24 March              6xTCLaughing  

    Firni                    #6     25 March              6xTCLaughing

    Texas357           T#8    31 March       3xFECLaughing+9xTaxotere   

    Texas357           T#9    4 April           3xFECLaughing+9xTaxotereLaughing    

    Grancy11             #6     6 April              6xTCLaughing   

    Bold                    #6    13 April                 6xTCHLaughing

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  • mmliv
    mmliv Member Posts: 128
    edited March 2009

    Elaine - Radiation was easy; only hassle is having to be there every day. Fortunately my skin did not break down, I only have some nipple tenderness and a red/rough area on my SNB scar. Already two days out and the skin is already healing.

    My rad onc said not to use creams/lotions. They are concerned about the ingredients interfering with the radiation treatment. In his experience they do not prevent skin damage and the techs agreed. Now, I am using a normal hand lotion to soothe.

    If a rash or skin openings appear then they have a cream for that. 

    Mary L

    ps Went to the high school's spring play - Anne Frank. My daughter played Anne and I am still pondering the cruelty....... even though it was just a play, seeing my daughter dragged off the stage was heart wrenching. 

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  • Grancy11
    Grancy11 Member Posts: 31
    edited March 2009

    simvog - hope you don't have bad se's from the taxol...are you doing once a week?  next time you update the list, I have TC treatment #5 on 3/16 and #6 (last!) on 4/6...extra prayers for your MIL

    Elaine, congrats!

    Mary L, congrats on being through with rads, hope your energy keeps coming up

    my onc told me last time he would recommend femara as my AI, and I've been reading about it a little - enough to scare me to death, actually, and made me decide to ask again what benefit I can expect from taking this...where do I find out more about this mistletoe treatment?

    prayers and blessings to all... 

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Grancy, these AIs make me nervous too. Femara seems to be the most effective, from what I've read. I just wish they knew more about the long term side effects because it makes me feel like a guinea pig to take a treatment that's still so new.

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  • havehope
    havehope Member Posts: 503
    edited March 2009

    Grancy11

    Yes, I do 12 weeks.

    Thank you for the kind words.

    Here is where you can start reading about mistletoe.

    http://www.iscador.com/

    The treatment is not for everybody. My tumor was very peculiar from the beginning, it looked more like benign that malign and I had 5 biopsies done on the tumor. It was a mosaic tumor which means than some parts are TN some are very strong PR+ (90%) one biopsy found PR+ but overall is a weak positive but 100% HER-. For my case hormonal tretment SEs will outbalanced the positive effect and I chose not to do it.

    You can find more info under the Alternative, Complementary & Holistic Treatment forum.

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  • Lainey64
    Lainey64 Member Posts: 740
    edited March 2009

    Hi ladies.  I'm on day 3 out from my last TX and the body aches haven't hit too bad yet.  I forced myself up early this morning and got to "Curves" to workout.  I hope that will help.  I think I wore myself out though because I slept hard for a good 2 hours this afternoon.  But oh did it feel good.  I'm taking ibuprofen every 4 hours like clockwork whether I have pain or not.  I'm determined to make this last one as pain-free as possible.  It's funny, but for the first time in a long time I've had a crud taste in my mouth.  I think I need to go suck on a lemon!

    Simvog - I hope you're still doing ok.  I've heard that the weekly Taxol's can be easier on the system than the dose dense but of course we are all different!

    Mary - thank you for the info on the rads!

    Hope everyone is having a good weekend.  Love, Elaine

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Okay, I'm discouraged and need a push ladies.

    The problems with my mouth and nails continue, and I feel so tired of the fight. It's almost a week after my last treatment, and nothing has eased up so I know I've got at least a week or two after I finish chemo to deal with these side effects. That's at least another 5-6 weeks!

    Mouth: I've had dry mouth since starting Taxotere 7 weeks ago. There's a horrible taste in my mouth, my tongue is sore, food sticks to my teeth and gums, and everything tastes bitter or like lard. Eating is a miserable experience.

    My fingernails and toenails throb all day and night. My hands are virtually useless for a lot of things. Imagine everything you might avoid if you had wet fingernail polish: that's what I have to avoid because of the nail pain. The nail beds are darkening, which means on top of everything else I'll probably lose the nails entirely. Thankfully the pads of my fingers, though numb, are useable. That's how I can continue to type.

    I need a good swift kick in the behind to get me through these next 6+ weeks until the side effects start to subside. Ideas?

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  • Grancy11
    Grancy11 Member Posts: 31
    edited March 2009

    Texas, how about a ((((HUG)))) instead?  will say extra prayers for you, plus it's ok to scream and holler and cry and howl and be down cause this disease is so icky there's actually no words for what it's doing to our lives and bodies....

    that said, you are 3/4 of the way through and you can do it - anyone who has come this far has strength enough, you just have to grope for it in the darkness...all of us here are pulling for you

    love and blessings to all

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  • mmliv
    mmliv Member Posts: 128
    edited March 2009

    Texas - Thank you for sharing your frustration; people love to say that a "wonderful attitude" is our solution to all problems..... what they don't know is just what Grancy wrote.... it is what keeps us going when we feel and look lousy. If you haven't already, let others help you in all routine tasks; and you concentrate on what makes you feel better. 

    Have you tried the various beverages that others said that helped the dry mouth? Ginger Ale, cranberry juice, helped for me, as well as plain distilled water, and I discovered that salt is what caused the bitter/detestable taste. So this may sound silly... but unsalted McD's french fries with a plain hamburger tasted wonderful. The grease felt really good in my mouth. Plus you need a lot of protein while going through with Taxotere. Meatloaf was another winner.....

    I ate cottage cheese with pears to keep up the calcium intake and I think that helped the nails... others say to keep them cold - you might try that.

    Each of us have to find what works - I'm praying that you find solutions to this set of SEs.

    Mary L 

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  • colleen1960
    colleen1960 Member Posts: 226
    edited March 2009

    Elaine:  Congratulations on finishing up!!!!!  Smile

    Texas - I am sorry that you are having such a rough time.  But keep pushing ahead.  Everyday you get that much closer to being finished.  You know everyone is praying and pulling for you and everyone out there.  Remember it is ok to let go everyone once in a while.  I know when I was having a rough time I would come here and just type and type and I always felt a little better. We are always here to listen and try to help.  Sending you HUGS!!!!!!!!!!!!!

    I saw the PS and everything is a go for the 26th.  Had all my pretesting.  I am not sure of the time yet they will let me know.  I have to stop taking all the vitamins 10 days before and Tamoxifen 7 days before.  I am very anxious to get this done, but also very scared.  It will be 6 to 8 wks recovery time again.  It seems like starting all over, even though I know I am not.  Also wanted to ask?  I am having a pain in my left heel on my foot, I am wondering if it is from the Tamoxifen just thought I would ask.  Went to a St. Patrick's dance last night.  I was home by 11:15, just don't have the stamina.  I am usually the one who is one of the last to leave and everyone was surprised when I said I was leaving, but just to tired.  Wishing everyone a good week ahead and even it your not Irish (everyone can be Irish on Tuesday) have a Happy St. Patrick's day!!!  And you will all be in my thoughts and prayers.

    Hugs,

    Colleen

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited March 2009

    Has anyone developed zits from chemo?  I am breaking out with little white-heads all over my cheeks, just like when I was a teenager.  Any suggestions about what, if anything, to do? 

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  • swest
    swest Member Posts: 680
    edited March 2009

    Yea Colleen!  I am so happy for you!

    Mandy -  I have not had any problems with break-outs.  I'm sure someone will have some words of wisdom for you.

    Elaine -  I hope you are feeling OK! 

    Texas - I had to have my onc. give me prescript. for a mouth rinse.  That helped a lot.  Also I drank a cup of chamomile (spelling?) tea every day.  I hope this will help!

    Mary - Congratulations to your daughter!  You should be so proud.  The leading lady...how exciting!

    I am doing well just waiting on my hair to come back in.  I check everyday so far no go......

    I have an appointment on Thursday with my PS to discuss putting in expanders.  I am getting very excited.  I am ready!

    Good day to all!

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  • Bold
    Bold Member Posts: 692
    edited March 2009

    Texas: I have posted this before but perhaps you have missed it . My onc told me to take

    Vitamin B6 as well as glosamine. It is an amino acid. So far it has helped me. I have only a little tenderness and numbness in my right foot. grrrr.

    So many people done with the worst of it. I pray that this is our only challenge and we can go on with a life that is stronger than ever.

    Peace

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Thanks for all of the virtual hugs ladies. I put on a favorite CD, danced and sang for a while, which helped. I've just got to keep pushing forward.

    Swest: I am on my 2nd bottle of the prescription mouth rinse, plus Biotene mouthwash and toothpaste. Nothing helps. My onc said there's nothing more he can do. He's already backed down on the taxotere dosage and doubled the Decadron dosage.

    I bought Cammomile tea but it tastes rancid to me. It may taste great once I get my taste buds back. Right now, the only things I can gag down are orange soda and orange spice tea.

    Mandy, I've had the exact opposite skin reaction. My skin cleared up. I was expecting problems because I've been using heavy creams to combat the dryness. Are you using anything different right now?

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    Hi Texas,  It sounds like you and I are sailing in the same boat.  I have now gotten to the point were I can eat ONLY fruit, vegetables and eggs.  Everything else is like eating lard.  Even water.  So I drink no sugar added fruit juice.  The lard taste just won't leave my mouth.  I used to be able to eat more things by making them spicy but now the lard taste comes thru and my tongue is too sore to go too spicy. You are right; eating is miserable.  I'm thinking that when the steroid weight drops off, ( I look like Uncle Fester now) I'll be seriously underweight.  

    My mouth is always dry too.  I do keep lemon drops and life savers around to suck on.  Mostly fruit that is juicy helps.  I keep chap stick on my lips at all times and that does seem to help some.  I brush my teeth a lot.  I make sure to brush my gums and my tongue and the roof of my mouth.  It just seems like there is a film that I can't get rid of.  I also use Biotene every time I brush my teeth and in between brushing.

    My finger nails are just about all white now.  I'm more worried about getting an infection or fungus under them than them falling off entirely.  Of course if they do fall off, I'll be really bummed.  They aren't getting dark and they aren't throbbing.  I know what you mean about babying them and trying to not do things.   My toenails hurt and feel like they are higher than they used to be.  Doesn't look like it tho.  I can only wear my Crocs now.   My finger tips and the bottoms of my feet are tingling all the time.  I'm just waiting for them to go numb.

    I'm still having problems with edema.  Even keeping my feet up and trying to elevate my hands doesn't help. It's just all over my entire body.  Which is why I look like Uncle Fester.

    I'm so tired and weak that I can do almost nothing.  I can tackle one project a day if that.  Yesterday it took the entire day to clean the bathroom.  It's a very small bathroom.  Today I'll start the laundry.  I can only go up and down the stairs about 3 times.  At some point, DH will have to finish up and get it all upstairs for me.  I don't know how I'll ever build my strength up to function normally again.

    I pretty much have no good days between treatments any more. So, I know I'll have at least three bad weeks after my last tx which is in two weeks.   All this is why I rarely post any more.  Too hard to stay positive.  

    But Texas, if I can get thru it, so can you.  I know you have a couple more Tx than I do but our timing isn't too different.  My last one is 3-24 and yours is 4-4.  I have pretty much resigned myself to the fact that I will be sick thru 4-15 at least.  I've never gone more than 3 weeks before getting another Tx, so I don't know how long past the 15th I'll feel bad.  I know I can get my port out 2 weeks after my last Tx and my exchange surgery is scheduled for 4-29.  So my eyes are on the prize and I will do what I have to do and focus on getting my hard expanders out and permanent boobs in.  I now have 6 1/2 weeks  till the exchange surgery and I can make it.  It's been almost 5 months since my Bi-Mast.  And 4 months of chemo.  6 1/2 weeks should be a piece of cake.  Every time I get really discouraged, I look at how far I've come and how little there really is to go.  I hope you can find a way to look at things to get you thru to the end of it.

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited March 2009

    Oh Firni! Keep telling yourself that at least no rads so when your last chemo is done you should fell better 3 weeks later. YOU CAN DO IT! I feel like a whimp complaining about my tiniy SEs compare to all of you.

    Divas, we're almost done :) Firni is right, keep your eyes on the prize!

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Thanks so much for posting Firni! It helps SO much to know that others understand. DH really tries, and he's been so wonderful, but until you've walked in our shoes you can't really know what it's like to endure all of this piling on top of you.

    The way you described your mouth problems sounds exactly like mine. I'm doing virtually the same things, including all that brushing!

    Thanks for being there. I will celebrate when March is history.

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  • havehope
    havehope Member Posts: 503
    edited March 2009

    Firmi and Texas hang in there. Soon it will be all over. I started Taxol on Friday and so far no SE but I have 12 weeks to go. So I am looking at end of May....long way.  

    My MIL will have the port installed tomorrow and she starts chemo on Friday. We still don't know the final diagnostic yet but the doctors found something suspicious at liver. It doesn't look good. They need more investigation. But the situation is so different in Germany then here. The doctors are telling my SIL to get ready for bad news and that they need to pray so the chemo will work. I am very disappointed the way the doctors treat my MIL. It looks like they gave up on her. Also one doctor said that she has no mets and no investigation is needed and the gynecologist said no way she needs more tests. Very frustrating.

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    Caroline, You are right.  I am so thankful not to have to do rads.  Everyone says that the hardest part about rads is going every day.  At this point, even that might put me over the edge.

    Texas, you sound like you're in a better frame of mind.  My DH does try too, but there are days it's like he's forgotten that anything is going on and I should be fine.   Yesterday he wanted to know if I wanted to go to the parade.  Right.  I can barely walk to the bathroom without becoming exhausted. It's been a long haul for him too.  Especially when he feels fine and I've always been a strong, active person.  He does what he can and tries to understand.  But he doesn't know who this woman is.  Oh well.  A year from now, I won't remember how bad it all was.

    I'll celebrate the end of March too.  If I could stand it, I would have brownies with walnuts and ice cream on top.   

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Ladies, you are all my heroes today. You were there for me, and I'll always remember that.

    The messages of encouragement really do help.

    Simvog: I'll say a prayer for you MIL and for the doctors who are caring for her.

    Firni: a hot fudge brownie sundae with walnuts might be in both of our futures!

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  • Majanumba1
    Majanumba1 Member Posts: 99
    edited March 2009

    KEEP YOUR EYE ON THE PRIZE has been my mantra for the last two treatments. One more to go , rads for 6 weeks,herceptin every 3 weeks until December and I am good to go.

    It has been a long winter with this chemo but we are all close to the end. I don;t know how I could have done it without the Divas and the THC campers. I am so glad I found this site and the wonderful support it has provided.

    Hang in there, ladies!!!!!

    Maja

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  • swest
    swest Member Posts: 680
    edited March 2009
    Lisa - Good luck on your exchange this week.  Let us know how it goes!  Wink
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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Carolyn, I love that!

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    Thanks Swest...been fighting off a chest cold this weekend...I'm think I have it licked!  My son ended up with strep throat and an ear infection...I had been avoiding him...but the flu and cold is really rampant around here now!  But I just got some extra sleep and the extra hours of zumba helped...sweat it out!

    Hope everybody has a smooth, uneventful week when it comes to SEs!

    Make it a great day!

    Lisa

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  • zuffa
    zuffa Member Posts: 95
    edited March 2009

    Firni/Texas -- almost there!  I know what you mean about the bad taste/mouth issues - #5 was the worst for me as far as that goes.  My last TX is Weds. 3/18.  Then on to surgery in a few weeks and then rads.

    simvog - I can imagine how difficult this is for you to deal with and will keep your MIL in my prayers.

    Lisa -- Hope the exchange is uneventful and you are pleased with the results!

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  • Lainey64
    Lainey64 Member Posts: 740
    edited March 2009

    Good morning ladies.  I"m sorry to read of all the cruddy SE's still plaguing us.  For the first time in several weeks, I've developed the crud taste in my mouth.  The "lard" taste as Firni put it.  It's really gross.  Everything is tasting weird.  I made a pot of chili on Saturday and could barely taste it.  I had to overload my serving with salt just to get any flavor.  I think chemo is having it's "last hurrah" on me.  But on the good side, I've been taking so many pain meds I haven't had too much body pain.  I keep tellling myself this is the last time.. that helps a little.

    I received a tip on how to make my eyebrows grow back faster -  castor oil.  So I bought a bottle yesterday and rubbed it into my brows.  I even spread a thin layer on my scalp.  I'll try anything!

    Love, Elaine

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  • Majanumba1
    Majanumba1 Member Posts: 99
    edited March 2009

    Castor oil? I' m going to buy some as my eyebrows are getting seriously thin.



    Maja

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  • Lainey64
    Lainey64 Member Posts: 740
    edited March 2009

    Yes, castor oil!  My neighbor who is a makeup consultant for a very high end cosmetics company told me about it.  So I bought a bottle of it yesterday at Whole Foods and after doing a little online research, there seems to be a lot of info out there about castor oil promoting hair growth. I even spread a thin layer of it on my scalp.  It's very thick so you can't use too much or else you'll be an oily mess (as I found out last night!)

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