Starting Chemo February 2009?

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2009
    Yep, I have all sorts of weird things coming out of my mouth too - my 5 year old is very quick to point them out! I feel very vague too. All you can do is laugh, I guess.
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  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited February 2009

    Kerry Mac--  I am a January Jewel going for my third tx of FEC.  How have you found ses?  I am very nervous about the taxotere-what have you heard?  My ses so far have been:  mouth sores, black dots on the base of my fingernails and nausea for about 7-10 days.  I take the emend, the compazine and the atavan.  Last tx was not good in terms of nausea, but this week-week two- I feel okay.  So glad I don't have to chug water while pluggin my nose!!!!!!!! Oh yeah, the tips of my fingers go from numb, to raw, to sore-but no peeling.

    Hugs to all...One week away from FEC # 3

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2009

    Jess - hi there! I have my third FEC on next Friday too! So far my biggest SE is feeling "off" for about a week - I can't even describe it, it is nothing specific. The worst thing I got this time was a terrible taste in my mouth, and reflux. Nothing I did seemed to help! I also felt slightly sick, slightly light headed, Foggy Brain, etc. No mouth issues - I am religious with the Baking Soda gargles. My first round was worse for sickness, last round I got a Kytril IV which helped.

    As for Taxatore, I have heard mixed reviews - some people find it easier, some harder. I think the nausea is less, but people complain about tingling and numbness in the hands/feet  and muscle aches. Guess we will find out! You just get used to what to expect from one drug, and what woks then you need to find out abouit another.

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  • jdeking
    jdeking Member Posts: 408
    edited February 2009

    Good luck today MicheleS! We will all send you good vibes!

    Congrats on 1st tx Jancie! The ball is rolling, and it will hopefully be over before you even know it. I liked your chemo card story, it can be tempting to use that one, I will have to see if I pull it out over the next few weeks! I think I would most likely use it at work... lol.

    kat4pink and KathyAlex1960 so sorry about your delays. It is so frustrating to get mentally prepped for all of this and then just get your plans dashed at the last minute. I am scheduled to *finally* start tomorrow, and ended up randomized to the TAC X6 regimen. Can't say I am thrilled, as I really didn't want all 3 drugs at the same time, but we'll see how it goes. TwillNW I am so excited for you having minimal SE's! I think it gives us all hope that it will go the same way for us, or at least maybe the next tx will be better. And I had a moment like yours yesterday in line for the bazillion meds I had to get filled... there were 3 women in line in front of me with long gorgeous hair. I was just thinking "do they know how lucky they are?!?!?" which I realize is totally irrational. I will terribly miss my hair, but it is a sacrifice I will make to kick cancer in its a$$!

    One ques.. what is the usual dosage of steroids? My PA set me up to take 8mg of dex in the am and 8 in the pm, and that just seems like way too much. I am bucking her orders and just taking 4 (and if that is ok, will just take 2 next time). 

    Good luck to all this week!

    ((all))

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  • apple
    apple Member Posts: 7,799
    edited February 2009

    jdeking -   i bucked my onc's orders and took half the dosage of steroids as well..  then i only took 2 of 8 pills.  i really love those steroids and wanted to hord them to tell you the truth.. they are so performance enhancing... (great for piano).  i still have 8.  However, i am particular immune to side effects.  .. and i have tons of natural energy.

    now they give them to me intravenously.. and they are way too much i think.. i'm buzzing for 3 days and they make it easy for me to be really mean to my kids.. i shout at them for instance and i'm not a shouter.  i wish i had the pills so i could reduce the dosage (and hord them)

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  • jdeking
    jdeking Member Posts: 408
    edited February 2009

    apple - you can have some of mine, they gave me 48!!!

    I definitely don't want the superbuzz (or terrible coming down) from too much steroid. I hate to be grouchy, and also have lots of natural energy. I guess I will make sure I have no allergic rxn and then just get them in the IV also. Even with just the 4mg this morning, I am already feeling kind of a buzz. At least I'll have a productive day at work!

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  • kisblessed
    kisblessed Member Posts: 7
    edited February 2009

    Hey All,

    Getting back on track-2 previous attempts to post went to cyberspace.

    My onc allowed my family a 5 day trip prior to chemo start, with me on Tamoxifan for Jan.. We flew back on Sat, repacked overnight and flew on Sun. the 8th from TN to California where I am being treated.  My 1st chemo was Mon Feb 9 @ !0AM!  My husband has medical problems requiring 24/7 care from a hospital aquired infection this past yr--what a yr!  This was our decision -maker to stay with oldest daughter/SIL in LA.

    Sat 14th, I did the pixie cut-thing..doesn't feel like me.  It's like I'm playing pretend!

    Tues 17th, I had lab drawn.  My WBC-104 from 8000 the day of 1st treatment and temp 100.4.  They put me on antibiotics, hydration, rest :) temp cks every 6 hrs, restricted to the house x 1 wk and Nulasta.  They are trying to keep me out of the hospital-thank goodness!  Now I will get Nulasta each cycle.  Thanks to Ins companies who wants symptoms prior to approval!!

    You are all so great and such support

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  • kat4pink
    kat4pink Member Posts: 63
    edited February 2009
    jdeking - Good luck tommorrow...I will be doing the TACx6 treatment also.. so please keep me posting on how you do!
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  • kmn0701
    kmn0701 Member Posts: 117
    edited February 2009

    Good luck Michele!! Hope it's less eventful than last time.

     Steroids suck. I had insomnia for two days after round one.And I also noticed I was irritated much more easily. My poor girls. Frown

    I'm going to take a picture in my pink wig once I get it (and my hair falls out) to update my profile pic. Wink

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  • kat4pink
    kat4pink Member Posts: 63
    edited February 2009

    got a quick, silly question...

    on one thread I read where we should eat yogurt because of it's active cultures (also noticed on the label it has 250 g of potassium.. is that a good amount??), but yet on another thread I read where someone mentioned NOT to eat it because of it's active cultures.  I plan on using yogurt to substitute my sweet cravings, but don't want to eat something that I shouldn't be.

    Also, on the whole sugar thing... jancie is eating chocolate, so does that mean I can still eat sweets? lol I have a bad sweet tooth, but I thought I heard to stay away from sugar because cancer cells attach themselves to sugar.. and what about the whole sugar substitute thing? The low fat yogurt has aspartame in it.... so if we are to eat yogurt, do we stick to the regular, not low fat or fat free kind? Also, does it need to be Activa (they don't have much of a variety on the flavors), or just any kind that says it has active cultures?

    Thanks for helping me sort this out in my head. (and just wait and see how much help I will need AFTER my treatment starts and chemo brain kicks in! lol)

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  • flmomof3
    flmomof3 Member Posts: 28
    edited February 2009

    Suzmarks: 4-11 is normal range according to my lab paperwork...however I have been at 3.5 and they do nothing...when I was at 1.5 they were worried...and I think you are right, anything below 1 puts you in the danger zone. I don't understand the Neupogen vs Neulesta? why they waited for me to go low, and I did not start off like the rest of you with Neulesta right away...that will be my first Question for round 2.

    Living4today: I am so so sorry you are still in the hospital...Sending you lots of love over the internet~~ please use this time to rest so you can get home soon!!!

    michele: hope all went better today...thinking of you too!!!

    Chemo just sucks!!! Am I allowed to say that?

    Love to all.

    Sue from Fl

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  • Terri42
    Terri42 Member Posts: 56
    edited February 2009

    Hi guys!  Done with AC #2 - I'm finding that less anti-nausea meds the better I am although they did add the steroid pills for two days after chemo with the Emend - I am feeling better than round #1 - still "spacey" but not nearly like last time.  I agree with everyone trying to go natural with some things - like try to keep yourself regular by eating foods that help instead of taking yet another drug - that totally screwed me up last time too.  It's amazing how differently this all hits us but it's worth trying different solutions each treament to at least try to make them a little more liveable!

    Webwriter - love your picture - I'm heading for the same look this week - trying to hold out til Monday when I have a wig fitting appointment but not sure I'm going to make it til then - the strands are coming out - thought about spray glue!

    Wish we all weren't here but I'm glad to have you!

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  • TwillNW
    TwillNW Member Posts: 46
    edited February 2009

    kat4pink, I also find the whole food thing a conundrum too - what's good, what's not - doesn't seem like there is any consensus of opinion on anything except lots of fruits and vegetables are good, and you need protein  - other than that, depends on who you ask.  On soy, I don't eat it but use soy sauce occasionally in cooking - ok, not ok, who knows?!?  On the sweets front, I am limiting myself to dark chocolate with maybe an ice cream or cookie once a week or so.  The artificial sweetners thing is even more confusing... my big (huge) vice pre-cancer was diet Coke - probably 8-12 cans a day.  I had cut way back before chemo and now it doesn't taste good, but in trying to substitute something and keep fluids up, water gets boring, many juices have sugars, and most of the flavored waters (or water flavorings) seem to have artificial sweetners.  What to do?  What to do?   

    Terri42, congrats on getting #2 done.  I was happy after my #2 AC yesterday to think that half of the AC I'm going to receive is in me and doing the work it is supposed to do. 

    I have decided to think of my chemo drugs as "whup a*s!" which was what gave the Power Puff girls their special super hero powers.  I think it became potion X (or something like that) instead of "whup a*s!" when PPGs became a children's cartoon.  So here's to the "whup a*s!" drugs getting rid of cancer cells in all of us!

    Tricia in the NW

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  • webwriter
    webwriter Member Posts: 535
    edited February 2009

    Add me to the whole Food Thing list. I've always eaten "better" than anyone else I know. I've been mostly vegetarian my entire life. By taste, not choice. Once a year or so I'd get an odd craving for a hot ham and cheese sandwich, but other than on road trips (where burgers and fish sandwiches are inevitable) I haven't touched meat since I got out of the house. A loooooong time ago. My idea of a huge meal means there are 27 kinds of vegetables in my concoction instead of 15--and fried tofu was one of my favorite treats. (Thai style if I can get it! With extra peanut sauce.)

    After my DX, I've taken things even MORE to the "raw" edge and bought some cookbooks for totally raw, dairy free, egg free, mostly even soy free food. 

    Then I started reading some contradictory stuff. Eat more soy. Don't touch it. Eat more cauliflower, broccoli, carrot...wait, don't touch them! GAH!

    I've resorted to my Labor & Delivery Philosophy. Screw the classes, the studies and the training. Breathe when you can. Eat when you can. Sleep when you can. Sort it all out later. 

    I dunno what else to do. My body is rejecting even the slightesst hint of raw spinach on my down week. I can eat anything I darned well please on the up week. I'm just kind of taking it as it comes. I don't know what else to do. 

    TwillNW -- OMG the whup ass chemo connection just had me on the floor. Thank you for that. I think I'm adopting that for permanent reference!

    Thanx for the photo compliments everyone. I'm still utterly thrilled with it. I still wish I'd done it sooner. As more are joining the Bald Babe club, I'll warn ya tho. Sunscreen is a good idea to drop in your go-bag of choice. And dry scalp isn't doable. I seriously put lotion on my head today. It felt GREAT! I promise you, once the crying is over and the head is bare, you're going to LOVE the freedom, no matter what you choose to wear in public. Truly.

    Yikes, I'm so far behind (AGAIN) that I'll NEVER get caught up. Why can't naptime last ALL DAY?

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2009

    There is a great pdf from UCSF on Nutrition and Breast Cancer -

    http://cancer.ucsf.edu/crc/nutrition_breast.pdf 

    As for eating during chemo, I think all rules go out the window. I spoke to a dietician and she told me to make sure I got lots of protein, and lots of carbs. No-no's were antioxidant supplements (food is OK) and Green Tea.

    I also was told to avoid Soy and other Phytoestrogens (like Flaxseed) as I am ER+

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  • kmn0701
    kmn0701 Member Posts: 117
    edited February 2009

    NO GREEN TEA??? Shoot! I thought that was a "good" thing for cancer. Dang it. I don't know what to eat. I think I'm going to go have some ice cream. Where are those boiled peanuts when I need them? Cry

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  • Artemis
    Artemis Member Posts: 759
    edited February 2009

    Lisa810 ~ MmmmmmmmmAlmondBreeze!  I like to have vanilla when I eat my Grape Nuts ~ yum!  I was all about the soymilk until this cancer thing came along; thankfully, I have a cousin who told me about almond milk.  And thanks for the foot rub!  It helped, and I am feeling much much better today.

    Do any of you know if nutritional yeast is something to avoid?  I use that in so many recipes that it would be difficult to give it up, but if I have to I'll certainly do it.

    suzmarks ~ I'm veggie, too.  My onco's assistant told me that tofu about twice a week shouldn't be too much.  I've been making do with more peanut butter sandwiches, lol.
    Wink

    Michele ~ I'm praying for you and keeping you in my thoughts.

    living4today ~ Congratulations, soon-to-be Grandma!

    Hugs to all,
    Artemis

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  • apple
    apple Member Posts: 7,799
    edited February 2009

    no green tea?

    Surprised

    how am i to replace coffee?

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  • kat4pink
    kat4pink Member Posts: 63
    edited February 2009

    Is it wrong for me to be just a tad bit aggrevated that I STILL have not heard back from the onco's nurse? I talked to her on Tuesday, was told all the test results were not back yet and she would call me on Wednesday.. didn't hear from anyone, so gave it until 1:30 today as I didn't want to seem pushy, and left a message and never got a return phone call. :-(  Hard to just sit here and wait and feel ignored.. grrrr lol

    By the way webbie - I just realized how similar our diagnoises are... My surgical onco said I had more  nodes then most.. I guess you must too since they took out 19 of yours also!

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  • csbsk123
    csbsk123 Member Posts: 16
    edited February 2009

    Hi everyone.  My eyes returned to normal Monday and I had my second Herceptin infusion Wednesday.  I am waiting to see if I go sun blind again this friday.  My eyes and nasal passages seem to get dry easily.  My daughter shaved my head yesterday.  She said I look great and shouldn't wear any hats or scarfs.  I'm sure she will change her mind when I'm completely bald.  I do like the freedom, no bad hair days.  My wigs seem fine and when I go back to work next week I'm sure I'll use them.  Keep your spirits high and will get through this together.  Wax story was hilarious.  It felt good to LOL.

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  • Grace4me
    Grace4me Member Posts: 47
    edited February 2009

    Hi all!   sounds like everyone is doing better this week.  I had my 2nd AC tx yesterday and I thank God they changed my nausea meds and I am feeling better. I am still getting that awful  headache after the chemo and I am taking several bathes a day trying to get rid of this stink,,,,,any suggestions?? 

    I got my hair buzz cut on my b-day (couldn't take the hair falling out in my mouth} everyone is saying my wig looks just like my natural hair and since my lab red counts have been low, I am slightly enemic so I have been staying frozen, the wig feels warm.  I have been doing the lint roller on my head as I can stand it, so I suppose I will totally bald by next week.  My DH said he will be glad when it finally happens (he HATES the commando look on me). My DS went out today and got his buzzed for support. 

    I need to understand how you all are eating at all............I can not think of anything that sounds good and find that I am eating very little....I have lost 20 lbs, but I was very over weight prior to this so I can live awhile on what I have stored.

    Love you all and I am praying for you all.

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  • sue50
    sue50 Member Posts: 61
    edited February 2009

    Twill NW, I hear you on the Diet Coke. I was a major user pre chemo, and now it just tastes nasty, even on a good day!! 

    kat4pink  Can you try emailing your onc? 

    Foods?   My onc said to  'Eat what you feel like ; several small meals rather than 3 big ones. Don't worry too much about having a nutritious diet during chemo. You may find yourself craving salty unhealthy foods, and that's OK. You can go back to a healthier diet after chemo. Just be sure to drink a LOT of fluids, try for 3 qts a day' 

    The nurses said to limit caffeinated drinks to one a day....didn't ban coffee or green tea in particular... 

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  • Lisabarr
    Lisabarr Member Posts: 5
    edited February 2009
    Had my first chemo today and i was there from 10:30 until 6:00!!
    No negative reactions but they ran everything in super slow so it just took forever!!
    Glad it's over.
    No side effects.... YET!!! Laughing
    Im bracing for the weekend downturn though Yell
    Lisa 
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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited February 2009

    OK, I am frustrated. I have written a post and lost it now 3 times!!! How can I scroll through the posts and write my own at the same time? Every time I change the page I lose all my text!  AAAAAAHHHHH!!!!!!!!!

    Thanks for letting me vent. Anyway...

    webbie I love the picture with your head shaved. You look so happy! Nice shaped head , by the way.Laughing

    I have been contemplating how I want to handle my hair loss. This is my idea: The last weekend of this month I will be just starting week 3 post TCtx#1. I am planning a "shave Cheryl's head" party. I have 3 boys (14,18,20) and I told tham they can do anything they want to my hair that night. The only requirement is at the end of the night I need to be bald! They seem excited about it. I also think it will help them adjust to my having no hair if they shave it themselves.

    gcpommom I can relate to the fear of "chemo brain" at work. I am an RN at a hospital where I am juggling many things at once. I as concerned that my critical thinking skills and memory problems might compromise my patients' care.

    I will end now and press "submit" before I lose this text again!

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  • kmn0701
    kmn0701 Member Posts: 117
    edited February 2009
    xpectmiracles....I open two windows. One to scroll & one to type. And I LOVE your idea about getting your boys to help you. I'm going to have my 5 year old there when we shave my head so she sees that it's still me. I thought about letting our 3 year old but I think she would then try to do it to herself! Yikes!!
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  • suzmarks
    suzmarks Member Posts: 83
    edited February 2009

    xpectmiracles-great idea about opening 2 windows. thanks

    livingfortoday-so sorry about your longish hospital stay, hope you're out and about soon, hope your stay has been restful or comfortable for you.

    Judy-I, too, teach and today was my day of reckoning. I was washing my hair this morning and found my hands filling up with hair. After I finished my tearful pity party I called my wonderful sis-in-law whose been staying with me this week (winter break from school) and after comforting me she sheared my hair down to a cm. I have many bald patches and I'm not sure if I'll get the buzz cut I scheduled tomorrow. Now I have to face my 11th grade special needs toughies on Monday. I'm almost tempted to pull off my wig and just show them my head to get the whole thing out in the open but doubt I'll be brave enough. I'm assuming you told your students about your cancer and that's why the one girl has asked about your hair. Can you tell me about that experience and about their response? What grade/subject do you teach?

    I wore a wig out today to run some errands but it did feel strange on my head. I could feel the air space between my head and the wig plus it was windy outside and I had visions of my wig flying off my head. All went well and no one seemed to notice I looked different. Tomorrow I'm going to a funeral and will see many friends and people I'm friendly with. I feel like I'm going to have a sort of coming out situation here. Luckily I kind of like my wig.

    Tomorrow is my second CBC visit and I'm curious how low I'll be. I still can't quite make sense of my count being so low, it doesn't seem many others are dealing with numbers like this. Plus I feel so good.

    Has anyone noticed a change in their vision? My seems worse for reading now. Also while teaching one day last week I was seeing colors kind of floating in and out in one of my eyes. It didn't last too long and it had happened to me once before prechemo. I see CSBSK123 mention sunblindness, that doesn't sound too good either.

    Best wishes to all. 

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  • MicheleS
    MicheleS Member Posts: 937
    edited February 2009

    Well, so far (knock wood), chemo 2 is better than chemo 1.  They made major changes to my premeds and while I'm a little nauseated.... I'll take that!!!  No intense-painful nausea, not vomiting (yet).  And, I'm past the timing for when it happened last time.  I'm sure the "wall" will be the same but that was mamagble last time (take off work and sleep!!!.)

    So, more hair issues:  I need your advice. I hate to shave it when it is not to the "clump" stage yet.  Decisions, decisions, decisions.  Oh and Kristine, my 3 yr old is getting no where near the clippers.   SHe's be bald, the cats would be bald, maybe even her brothers if she shreaked enough... no, no, no...

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  • Terri42
    Terri42 Member Posts: 56
    edited February 2009

    Grace are you taking Zofran?  I was getting really bad headaches from that the first go round and didn't take it all this time and had no headache! 

    Kristine - I was laughing thinking of your 3 old year old - brought back memories of my daugther cutting her own bangs clear down to her forehead at that age!

    I know we're all getting to the hair be gone stage - I have alot coming out - not necessarily clumps but enough that I'm waking up waiting for the clumpage - I think I just need to get it over with!!!! I'm just such a chicken.  Suzanne we have had 50 mph wind gusts here and I was thinking how on earth am I going to keep anything on my head?  Yikes - good luck at your unveiling tomorrow whatever you do!

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  • ginagina
    ginagina Member Posts: 327
    edited February 2009

    Hi TwillNW - I am going to Swedish in Seattle. Decision made, I am doing TC. But I am just getting my head around this knew jargon, so I don't know exactly what it entails and/or whether it is a similar regimen to what many have discussed here. I am getting a port on the 26th and start chemo on March 2nd....but I am going to stick you all for a while. There are some funny/smart/sassy gals here.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2009

    Hey guys - I was just told no Green tea during Chemo! It is a really strong antioxidant, which is usually really good, but it can negate some of the benefits of Chemo. I normally have at least 4 cups of strongly brewed Japanese Green Tea (since diagnosis) which I have stopped during Chemo. But I think a couple of weakly brewed cups a day wouldn't do any harm.

    On another note, I just got my period this morning - thought that was one thing that was going to go!!! Anyhow, has anyone heard about NOT using tampons during Chemo??? I have heard that (increased risk of infection) but just wondered if anyone knew for sure...?

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