Starting Chemo October 2009

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Juanelle: if you have a Target nearby, they seem to have the best price on the Biotene mouthwash—$4.99 for 16 fl oz. I see a lot of people mention this as a good mouth rise though I suppose the baking soda would be cheaper.

    Curious as to what else you have in your chemo basket?

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    1L....to help you feel better, remember that all of the stuff you have is for every possible contingency.  Nobody has them all....you'll figure out which things work for you.

    The one my advisor reminded me to put ahead of everything else is to think about what you touch....be a germaphobe.  Keep disposable wipes in your purse, wipe down your desk, wash those hands, and try to break the habit of touching your face.  The other things are all related to relieving symptoms, and they're not going to let you forget about them for long! 

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Onty....thinking about you as you are about a week behind me.  I know your DH cut your hair, but have you noticed your armpits lately?  I still have leg hair, but the armpits are fuzz free....I noticed this a few days ago...wondered if it was typical.  Hey....we have to enjoy the smaller victories!

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Oh yeah we love the smooth look down there and also arm pits :-)

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  • one-L
    one-L Member Posts: 1,110
    edited October 2009

    MaryNy--  I have my Biotene mouthwash and toothpaste, Claritin, thermometer (for my purse), crackers, mints (different flavors and textures), kleenex, neosporin to go, blanket and pillow (for chemo bag), towelets, Lysol for work, squirt bottles to wash bottom, jello, pudding, nuts, dried apricots, tea oil for my nails, applesauce, assorted fruit juice and Gatorade, sugarless gum, genteal eye drops, pepsid, benefiber, imodium, dark chocolate and that is about it.

    Can you think  of anything else I might need?  I know I might not need  everything, but I didn't want to need it and not have it.  Most of the stuff will be used at some point even if I don't use it.

    Almost forgot, several different kinds of lotions and stuff for keeping my skin moist.

    Thanks,

    Juannelle

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited October 2009

    Hello October group,

    MaryNY, I think your roll call is a great idea! I am here visiting from the August09 group, I am reading thru your post to see if there is anything I can help you with. I was diagnosed in June with IDC stage IIa, I am doing TAC X6 followed by radiation X37 (because I had a lumpectomy). I am about to have TAC tx #5 this Thursday. So far every tx has yielded a different result. To me so far tx3 was the worst, however I am usualy almost back to normal by the 14th day after each tx, the 1st tx I was normal by the 8th day so it is cummulative. My se's are mostly nausea and fatigue and the very annoying taste in my mouth. I am sorry we all have to meet this way but I am glad we can help each other thru this mess. I will post after I read the rest of your post. {{{{HUGS}}}}} Donna

    ps: I have no idea why the body of this is so big, sorry!!!

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited October 2009

    MaryK, September 28; I read this post and had to reply. You nailed it on the head "breast cancer sucks" I say this all the time. But when you said you cried and had no idea why and did not have time for a pity party your thoughts are very familiar to me. I went in for chemo one day and could not stop crying I felt pathetic it wasn't the first time I had chemo so I wasn't scared just pissed off and over the whole process. I think it is ok for the occasional pity party this does suck and it's not fair but it is what it is. I have 4 out of 6 chemos done and can't wait for this to be a distant memory. Keep your chin up and as positive as you can, some days are great and some are not but there is a light at the end of this creepy tunnel! We can all beat this, others have! {{{{Hugs}}}}} Donna

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear 1L,

    Nice list. You will do fine thru chemo. Kick CANCER 'S butt!

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  • micheleboots
    micheleboots Member Posts: 1,993
    edited October 2009

    One-L,

    Not club soda and salt water, just the club soda...sorry for the mixup..

    Michele

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited October 2009

    One-L,

    You might also want to try Sensodyne toothpaste, and a tongue scraper helps me get the nasty taste of my tongue. Drink plenty of water the day before and day of chemo. Don't get carried away with a buying alot of food because your taste buds will change. I crave different types of food after each tx. For example,  I can't function without my coffee (black) but ever since chemo I can't stand the smell or taste of it and oh I miss it so much! Also if you or anyone else is getting the Neulasta shot, my chemo nurse told me to take 600-800 of Motrin for bone pain, I suffered thru my first one but haven't had any trouble since taking the Motrin, ask your nurse or onc about this.  {{{{HUGS}}}}} Donna

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  • ReneeJean
    ReneeJean Member Posts: 100
    edited October 2009

    Juannelle--we are on the same treatment and close to the same age I think so I will share what my first treatment was like.  I also had everything on your list plus some immodium and every cracker made!!  My dd was overwhelmed with the amount of carbs in our house<g>. 

    My 1st treatment was on a Wed and I felt fine until Sat....I took my zofran around the clock from treatment day and did all my normal things on Thurs and Friday.....  Sat I woke up and felt like a truck hit me...many times.   Took zofran and compazine...helped a bit but basically slept all day.  Got up and drove myself to the highschool for a band competition but didn't go in---it was pouring rain and I just didn't have the energy.  But I did eat a cup of soup from Quiznos and half a sandwich....Sunday I was just very very tired...didn't get dressed and laid around all day.  Bouts of nausea, but no vomiting and it wasn't constant.  Monday when I woke up I felt fine...hit the gym and bought $200 of groceries at WM and came home and baked cookies and dinner!  Felt fine the rest of the week....gym and running around without any problems.  I quit the Zofran on Monday evening.....and had occasional swift bouts of nausea through the week and my taste buds were weird---one day something would taste great and then the next day it wouldn't.  But overall, I was fine.  I returned to work on day 13...I had been off since my surgery 7 weeks earlier.  I worked 4 days last week and I was fine.  No fatigue and no nausea.  I am working Mon, Tues and Thur this week with Chemo on Wed.  I will take a long weekend to recover and go back next Tuesday.   That is my plan anyway.

    I use Biotene toothpaste and the mouthwash after each brushing.  For the first 4 days or so, I rinsed my mouth with baking soda/salt water every time I went to the bathroom.  I also drank water, a bit of gatorade (I hate the stuff) and a bit of sprite zero non-stop from Sunday prior to treatment through the weekend after....keeping well hydrated is key I beleive.  And take your zofran every 6-8 hours around the clock the first 4 days or so....I set my alarm clock even....I didn't want to take a chance of puking for fear I wouldn't be able to stop. 

    As for the wig thing...I went shopping for a wig before my first chemo tx and couldn't even try one on.  I was overwhelmed.  And like you, I was tired of making decisions and facing this beast.  I was given a couple of very nice wigs from a volunteer at Harris that were perfect.  That was fine until I actually shaved my head this week...then on Saturday I wanted something totally different from what my wigs and most current hair style were..that is when I went back to Dona's for real. So, don't feel pressured, but do make sure you are prepared if you plan to go the wig route. 

    Try to rest this week.  And make sure you are very hydrated prior to treatment.  Hugs to you. 

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  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hi Onty!

    Saw you on the Zometa trial board, too!  I asked my doctor about the trial.  I don't believe he is participating because he didn't seem very gungho to put me on it.  I am going to talk to him some more.  Even if insurance doesn't cover it, I would be willing to pay for it.  Unless it costs $3000 like Neulasta!  The Avastin trial scared me because of the heart issues.

    The results from the bisphosphonates trial seem so promising.  I just don't want to miss out.  Are you thinking of starting during chemo?  Or waiting until after?  I figure if I'm already hooked up, they may as well add one more drug to the mix.

    I have a cold today.  Or maybe its allergies.  In any event, I am laying low for a few.  Just got my new computer, so at least I have something to play with!  Still thinking of going to Mexico next week, but my sister wants me to go to a bc fundraiser with her.  Since I am their poster girl, I suppose I should show.  But I am thinking it may be my first weekend sans hair and I may just want to sit on the patio and have a little pity party.

    Love to All!

    Laura 

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    Valerie      im going to keep a close eye on your experience cause your into it about 1 week before me ive  4 MORE SLEEPS TO GO  till my chemo starts  doing 4xa/c   then after that im not sure going to chemo class on wed might find out more then  keep us posted please and all the best

    Joanne

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  • MeredithK02
    MeredithK02 Member Posts: 86
    edited October 2009

    Hi everyone,

     I've gotten my official chemo start date: October 23rd, so I hope it's not too late to join the group!  I've been reading through older posts, as it really helps me get a sense of what to expect.  I've got a 9am Chemo 101 class tomorrow at the doctor's office, but hearing it from people who are going through it probably gives a different perspective than what the nurse says!  I'm getting a port placed October 22nd, the day before chemo starts.  

    Edited to add: 10/23: start AC x4 (every two weeks), followed by Taxol x4 (every two weeks)

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    hi meredithKO2

     welcom to the thread i start chemo on the 23rd as well A/C x 4 evert 3 weeks as well my chemo class is wed  im a bit freaked out about it and i dont know if ill be doing taxol my onco never said ill find out on wed i hope it has helped me as well reading the troops stories and their experiences about treat well 4 SLEEPS TO GO !!!!!!!!

                                                                Joanne

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  • suz45
    suz45 Member Posts: 796
    edited October 2009

    Hi Everyone,

    Wow has this group grown! (off topic) First and foremost thank you everyone for all the prayers, thoughts and support. It was a tough few weeks and I really needed a room to be honest in. You gave me that and so very much more! I went ahead with my #2 chemo on the 7th and flew out of town on the 9th. I tried to start as many of the arrangements as I could long distance then hit the ground running once I got here. My dad had a beautiful service that was very much him, and I also got to sort out all his belongings that will go to either family or donated to charity.

    Also once that was all done I spent some real quality time with my mom, stepdad and the rest of my family here. I really needed that as well. I'm flying back home tomorrow and am at peace with this all. I sure couldn't say that 2 weeks ago! So again thank you.

    Now Ive been extremely cautious regarding germs, colds and all of that as I knew my white count would be low at some point while here... and think that all seemed to work. But I think I have a problem I completely missed. About 4 days after getting here I started noticing a foul odor (after urinating) almost like sewage right before I flushed the toilet.. didn't take too much notice. Thought maybe nasty water or chemo being flushed from my system or whatever. Figured it would just get better after a few days and I drank even more fluid to help flush my system faster. My mind wasn't really focusing on this as any sort of a problem and I was also planning on being back home last week. Well I had to stay here longer and was insanely busy still. This morning I noticed it was definitely still there and I'm also getting a sort of uncomfortable almost painful sensation now when I'm almost finished urinating. Now after searching this site Ive found just a bit of info and I'm kinda thinking its a UTI. Having never had this or anything like this, Im just guessing.

    I don't have much of a choice right now but to fly home tomorrow (as planned) and have my docs there deal with it. Hopefully quickly... Any input from anyone who has had a problem with something like this (even before chemo) would be really helpful. Ive been concentrating so much on not getting a flu or cold that this is just hitting me out of the blue! I would have went to the doctors here a week ago if my head was on straight.

    Sorry that this is an all about me post, but I'm still catching up on reading everyones news in the order it was posted.

    Gentle Hugs All, Suz

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Suz,

    Hope your urinary issues turn out to be nothing more than a UTI. Please consult  a doc ASAP. Good luck.....

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Hi Laura,

    I'm going to ask my Onco at my next appointment about Zometa and if she agrees to start it doling out! There are not many centers in NJ/NYC that are participating not even Sloan so I'm a bit cautious. Does this mean they don't there is value in bisphosphonates or what?

    Love,

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  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Suz - Get some AZO tablets at the drug store.  They will help immensely with the pain, itch, etc.  They are over the counter and even my ultra-conservative doc recommends them.  It will help get you home!  And drink cranberry juice!

    Onty - My doctor gives Zometa to his patients with bone mets, so I'm sure he sees it as a valuable drug.  When I mentioned it to him at my last appt, he just said that it is not currently the standard of care.   But if you've read all the results of this study, you probably believe, like me, that it WILL BE the standard, and very quickly.  I think the study is just verifying which of the 3 works best, and optimal times to start treatment.  I would think your doctor may be more likely to give it to you because you're triple neg.  Which reminds me - look up the study on the vaccine!  They are especially hopeful for this with triple negs.  You may qualify for it.  If I remember the name/number I will be sure to post.

    Still have a little cold this morning.  Love my coffee, but it just doesn't taste as great with a coating of slime!  Hair is still on head, but is very flyaway.  I was reading through the Cytoxan/Taxotere board last night, and saw that several of the ladies had lost their eyebrows and eyelashes around the 5th treatment.  Since I am in for 6, this has me a little depressed.  Do you think I can use Revitalash or Latisse?  OK, I will worry about that when the time comes.  Sometimes I think this is all a test to rid me of my vanity.  Not sure I even know who the person is underneath.

    On a positive note - kids have 2 more days of fall break.  Perhaps a little trip to the State Fair is in order!  Food is automatically more tasty when it is served on a stick!!  And if you've never tried deep fried pickles, you really, really should.

    Laura 

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  • budoml
    budoml Member Posts: 17
    edited October 2009

    FEC-D SmileSmileFrownFrownFrownFrown;  then radiation then hormone therapy

    Hello All;  I have been on in Sept. the odd time but would love to join in with you all.  Hope you don't mind.  I am Marilou in Nova Scotia and I have been dealing with the supplement issue as well.  I started my first chemo in Sept. so may be a bit a head of you.  I will be going for my third round on Oct 19th...just had my second on Oct 8th.    Things are dealt with a bit differently here in Canada so it might help to have a (possibly different) outlook on some issues.

    The first chemo was pretty miserable. Was nauseated and did vomit 3 times but the worst was over after 4 days. Than I spent the next 2 1/2 weeks feeling awesome!  Walked every day, exercised a bit, etc. So HANG IN THERE...  The 2nd round was not nearly as bad nausea wise but the lethargic/sad feeling lasted longer as did the metalic taste in my mouth. I was out and about on day three but it took me 8 days to get back up to full snuff and feeling ready to tackle the world again.    The biggest thing I can suggest...beside drinking lots of fluids....is try to get out each and every day no matter how much you don't want to.  Walking, going for a drive...if you have a friend who can take you away from the house it all helps.  I found the worse part of it all is feeling sorry for yourself and not being able to snap out of it.  just sitting around the house makes it worse.  The sooner you try to do things the faster it will pass.  Even if you are able to conquer one thing a day that is great.  But also be gentle with yourself....don't beat yourself up in any way!!

    If you are able to afford acupuncture than I would highly, highly recommend you have it either the day before or day of your chemo sessions.  I am positive that this is what helped me the most with the nausea.  If you can find an Asian trained acupunturist who works with the "five elements" that would be your best bet.  At least try your best for the Asian trained as opposed to a physiotherapist who took a couple of weeks of it. 

    So....supplements.  You will be very hard pressed to find any ono who will "allow" supplements during chemo.  The medical profession fights tooth and nail against natural paths.  Even if there is evidence to show otherwise they seem to have a hate on for them, which does not help those of us trying to find the best ways to deal with all of this.  Bottom line...chemo is a poison that we need to put into our bodies to fight cancer and certain supplements would help make things easier.  So I managed to talk to a Dr. who was a bit more "open" about supplements and we did come up with a few that would not get in the way of the chemo and would certainly help with certain aspects.  A good multivitamin for sure.  Than I am taking D3, pro-biotic, B6 and finally melatonin (before bedtime).  D3 is almost a miracle supplement and highly recommended.  Melatonin is on the bubble with all medical Dr.s however there are already numerous studies showing how it helps fight chemo toxicity as well as numerous other good things.  It is mostly used as an aid for sleeping but these new studies are very very positive.  There is a website available that lists all of these different supplements and how they react with chemo, etc. but I do not have it here with me.  If anyone is interested in learning about the site you can contact me with a PM and I will send it when I am back home.  There are about 6 other supplements that I was on that I did decide to stop taking while on the chemo but will go back to them as soon as I am off....three of those being Vit E, Vit C and ECGC which is a green tea supplement. Try Coconut water instead of gatordade (full of sugar).

    Eat healthy.....really really healthy.  This will help you with any other "boosts" that you might have gotten from supplements.  At least 6 servings of fruit (not juice) and veggies...raw are better...leafy, green also better. A juicer helps a lot.  Try to cut out dairy if you can and as little meat as possible.  If you have to eat meat try for organic if you can afford it.   Fish is great. Really really try to cut out sugar and processed foods..... I LOVE to eat so trying to be healthy about it is difficult but I do believe this also helped me with the 2nd chemo.

    I have indeed lost most of my hair but found it was less "uncomfortable" after I cut my hair short. (I had long black curly hair before all this began).  I cut it short right after my first chemo and then had my boyfriend shave it down with a "1" clipper when it started to hurt.  On the day of the 2nd chemo I had it "buzzed" as short as a clipper would go so I still have some fuzz on top...like in the army.  So far that has stayed and I think that having it this short has helped it not totally fall out.  I still have my eyebrows and lashes so far.   

    Sometimes it seems that we will never get through all of this. I knew that I will also be needing radiation since the shitty cancer was in a node but just found out that if you have had a mystectomy and radiation than most plastic surgeons will not do an implant, which I was hoping to have.  I am not interested in a flap reconstruction....why exchange one big scar for another. So it looks like I will be one boob short for the duration of my very long life!! 

    As someone else previously mentioned....I also love my wine and good food so going to a tee totaler, healthy eating, baldy is not so much fun.  (As an aside I have not gained any weight...walk walk walk and that will help).    Right now it seems like forever going through all this (I will not be done radiation and chemo until mid March) but it is one year in my life and "this too shall pass".  It is no fun but it will end one day and then we will take on the world!!

    Wow....I do go on. Laughing  My apologies and best of luck to everyone!   We will conquer.

    PS.  Two absolutely wonderful books....."It's not about the Hair" (don't have author's name)  and "Love, Medicine & Miracles" by Bernie Siegel, MD.   The first got me through all the scary new things I had to go through and was truly wonderful.....a must read!!!   The 2nd is teaching me how I can take control of this, be strong and beat it now and in the future.

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  • budoml
    budoml Member Posts: 17
    edited October 2009

    Hi Suzie;  Take cranberry pills.  I have had 3 UTI and was put on antibiotics (before chemo)each time but it came back again.  I ate cranberries (a handful of dried ones each day) and took one pill a day and it is totally cleared up!

    Good luck 

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  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hi again, Ladies!

    Am trying to add a picture to my profile, but it won't let me!  Any ideas how to do this?  It is a jpeg file (and a very cute pic of me - original hair! - and kids).

    Laura 

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  • MeredithK02
    MeredithK02 Member Posts: 86
    edited October 2009

    H Suz, just a note about the possible UTI.  I'm just back from my Chemo 101 class and the nurse mentioned UTIs specifically...that during chemo your white blood count can be low enough that you don't get the full-fledged symptoms, so even a hint of a problem should get checked out.  I hope the rest of your trip goes smoothly!

     Reading through the posts gave me some ideas for my chemo bag, so on the way back from the chemo class this morning DH and I bought some grape juice (to make popsicles), Biotene, and club soda.  The nurse mentioned I should stop using my antioxidant drops (Dr. Brandt's water boosters), but that it's ok to keep taking my multivitamin.  I asked if Diet Coke was ok, or if it had too many antioxidants, too.  Tongue out  I don't think she realized I was joking, but she said it'd be fine.

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  • MeredithK02
    MeredithK02 Member Posts: 86
    edited October 2009

    ps to Laura: Is your pic too big?  The first time I tried to add mine (from "My Home," "Edit my Profile," "Upload your own avatar") mine was.  I used iPhoto to shrink it, but there are also sites online that will do it for free.  If you need the links to any, just send me a pm or ask here, I'm sure plenty of ladies know!

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  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Very smart, Meredith!  I have a Mac, and completely forgot about iPhoto!

    As you can see, it worked!  And those 2 kids are the reasons I will be getting through all of this!

    Laura 

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  • MeredithK02
    MeredithK02 Member Posts: 86
    edited October 2009

    What wonderful looking kids!  The three of you look so happy there. 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Nice pic Laura.

    Sad to hear a doc saying no to antioxidants but yes to coke!

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Nice to see you Laura! 

    I've also added a photo of me - not my real hair but one of my many new looks!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Hi all:

    I had my 2nd ddAC on Friday.  After my first tx that I had two weeks prior, I saw my GP and got some migrane meds to hopefully ward off the type of horrific migrane I had on the night of the first tx.  Thankfully it worked a bit - only about 1/2 as bad and therefore only had 4 bouts with vomiting.  Again, the tx itself was quick - less than 3 hours from starting blood test to finish - out at 11 am.  However, about 5 pm the migrane started to come on and vomitting followed.  I did take the meds and the migrane was somewhat relieved by 50-60% within 20 minutes.  I am also now once again taking a daily migrane med (I had a history of migranes but was asymptomatic since 2000- that is until the chemo). 

    All hair is gone - and I mean ALL hair everywhere on my body excepting only eyebrows/eyelashes.  Even the hair on my arms is shedding and the lower regions - pure as a baby! (I will save all that money in brazilian waxes I guess!)   My husband is a wonderful support and constantly tells me I am rockin' the bald look.  It has finally cooled a bit (temporarily) in sw FL so I am comfortable with wearing different types of "Gilligan Hats" in bright beachy colors when I go outside. 

    SE's of the second tx seem to be fatique, fatique, fatique.  I am completely wiped out and finally today (three days later) had the energy to go out for a walk.  Just a bit of pain from the Nuelasta shot and a disgusting taste in my mouth;  however, no nausea so I will be thankful for that and try to get my weight back up.  I am still about 10 pounds light since the surgeries and really am struggling with my weight.  I have an appt with my GYN surgeon tomorrow for my one month check up from my hysterectomy/oophrectomy and I tell you that I am so glad to not be dealing with any issues of bleeding and cramping, etc that some of the girls I have met have had to deal with as they underwent breast surgeries and started chemo.  I had excessive cramping and bleeding and was always anemic so that was one thing less I have had to deal with :) Isn't it amazing how we find the "good" in our new normals?

    I wish you all little SE's and continued strength as you continue your journeys...

    Jaclyn

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  • mrsb45
    mrsb45 Member Posts: 122
    edited October 2009

    Valeriekd and Newtonville:

    I am 52 and also have my treatments @ MGH. Having last AC this Wed. (10/21) and then will be starting Taxol x12. Who is your oncologist ? mrsb45

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