Starting chemo January 2009?

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  • rsben70
    rsben70 Member Posts: 137
    edited January 2009

    hi all a praise my sis biopsy was neg so we only have to deal with my bc

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  • Renrel
    Renrel Member Posts: 497
    edited January 2009

    Today I had my bone scan and ct scan.  Uneventful other than a delay for for a pregnancy test.  Wouldn't that have been a kick in the pants?  The CT scan gave me a chance to experience a psudo hot flash, woohoo.  I also got to tour the infusion unit today.  Not scary at all.  Choice of private room or 4 bed pod. TV, DVD and I think laptop for each bed.  Massage and Accupunture available on a first come first serve basis.  Food supplied.  Art therapy cart to do crafts to pass the time.  Friends and family welcome.  I set up a lotsofhelpinghand.com site today but have not put anything into it.  I need to do a carepages as well, unless I look at it and find it to be redundant.  I ran into my nurse and asked her a few questions. She said not to take a laxative or softener before treatment because I may have diaria issues a few days after treatment.  I will get a script for a antianxiety/sleep aid.  She will write a letter for the garden program when we meet on Wednsday and told me to talk to the social workers about two other programs that provide services like food and transportation and house cleaning.  I just set up a lotsofhelpinghands.com web site so that we can let friends and family know how I am doing and what help is needed.  I bought an Ipod yesterday to help distract me during infusion and at other times.  Tomorrow I have my second to last accupuncture treatment and then I am going to NY with my 5yr old over the weekend to celebrate my Dad's 75th b-day.  My parents will drive us home and stay a week to help out.  DH will buy any last minute things I want over the weekend.  Day 1 is coming up fast.  Today my tummy was off, my leg ached, I had a slight headach and felt a small sore in my mouth.  I feel like I am getting a forshadowing of chemo SE's though I expect the chemo ones will be substanially worse. But maybe I will be lucky.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2009

    Quite a few of us on the August 08 Chemo board ordered beautiful scarves from a source I thought I'd share with you January gals, since I don't think anyone else has mentioned it yet ~

      http://www.anokhiusa.com/ 

    Their 30" square is a really good size, and shipping is free.  It takes a week or 10 days to get your order, but it's well worth the wait.    Deanna 

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  • KM47
    KM47 Member Posts: 65
    edited January 2009

    Hi everyone,

    Alo123 -well done booking in the head shave. I had reasonably long hair but had it cut short on Wed, before my first chemo yesterday (I love it so much I wish I had it done years ago). I plan to get it shaved once it starts falling out and already have bought some lovely scarves, skull caps and turbans.

    Hawaii808  and sjr585  - glad you are feeling better. And Hawaii808 that's great such advice about not trying to be superwoman. I think when people keep telling you how strong you're being there's a danger you think have have to continue to be strong even if you don't feel like it.

     rsben70 and jrgolomb- you are in my thoughs - I hope it goes well for both of you. Jrgolomb - I know you are also taking FEC and hopefully your experience of it will mirror mine so far. Other than some muscle pain (which isn't a listed side effect and my nurse friend thinks might have been due to me being so tense) I have no side effects yet, 24 hours on. I feel completely normal. However, I know that could well change as today and coming days pass, but so far, so good.

     ddlatt - pleased to hear the nausea has passed and hope the headache goes soon. Good luck for your Neulasta shot.I haven't had that but while I was hospital they gave me a med to prevent blood clots. It was meant to be given into the stomach but with a tram flap op they couldn't get to my stomach so the first nurse did it into my arm and boy did it hurt! The second nurse did it into my thigh (more like the stomach) and while I felt it, it was nothing like the arm. Obviously it's not the same medication but there may be some parallels?

    brendafromflorida   - hope your stomach issues come right soon!

    BerkeleyKim  - it's great to be able to count down isn't it - that's awsome!? Even though I may not be through the worst of it yet (since I have no SEs since yesterday's treatment yet) I still enjoy saying one down, five to go.

     ChrysalisPa - welcome to the group (tho wish you didn't have to be here). The women here are amazing and have been a big help to me. Hope you are feeling okay after your first treatment.

     lester63 - So sorry to hear about your illness. I'm sure your oncologist will be able to reassure you that delays aren't anything to worry about. Mine told me to allow four to six months for my treatment - four as long as we stick to three weeks apart but up to six if there are delays. My oncology nurse said not to get hung up on the three week period and just take it as it comes. Easier said than done I know - I hope you feel better soon.

    jas_man - Like you, I'll be having Herceptin for a year and Tamoxifen for five years. I'm 37 and also don't have children. However, my husband and I had already decided against having them but it was interesting when they told me about the implications of the treatment that I felt quite upset. I guess in the past I had control over the situation (and a small window of child-bearing years left) whereas now I probably won't. But like you, I have taken comfort in the "if it's meant to be, it's meant to be" approach  and my main focus is on staying alive. That may not work for everyone I realise, but it does for me. There is a thread you may be interested in reading here called Did it upset you to go into menopause? http://community.breastcancer.org/forum/6/topic/726914?page=1#idx_22

    carlajane even tho I'm in NZ I have ordered three lots of fantastic scarves etc from the US and the two that have arrived so far are great. I will have to hunt the sites out again for you and will do another post.

    Love to everyone.

    K.

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  • sweeeeetpam
    sweeeeetpam Member Posts: 115
    edited January 2009

    Hi Hawaii!!!!

                   After my second a/c I went to go in for my third and last one before surgery, and she could feel nothing!!!! I had done a self exam.....which I was bad at never doing BEFORE all of this, and was sure it was all gone.

                    So since she could feel nothing she stopped the third treatment, and I has a single mast 3 weeks later....I was really confused becasue I thought that if it desolved it then it was gone so why do the surgery, but my surgeon said that no matter what the chemo first does they still do the mast.

                  But what he explained was that if chemo is done BEFORE you have a much better chance of getting well because you have hardly any cancer in your body when they open you up.

    Where as if no chemo the cancer could spread very easily while you wait for surgery and then during..did that make sense??

                   I just got home form a/c feeling a little wierd, ate a big mac for the first time in 15 years...........still was not that good!!!

                    Pray for no s/e!!!

    Hope everyone is doing well to tired to talk now will write tomorrow. Hey Gilbert Girl I go on Thursdays., when do you go??? 

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  • sweeeeetpam
    sweeeeetpam Member Posts: 115
    edited January 2009

    Hi DDLATT,

                First did they offer you EMEND for nausea it is a new drug and is fantastic, you take one pill one hour before treatment, and then one pill for the next two days......pretty simple and then ondansetron 8mg, I also got if I feel quizy, I have had not s/e at all with these drugs. you may want to try.

                     On the Neulastra shot,..everyone is different, make sure you drink lots of water before and after,       I had no side effects, but always keep in mind that everyon reaches differently to these drugs, relaz, sleep late if you can, my first two treatments I worked right throught both, This time I have the two days off and becausxe I don't have anything to focus on I am worried.

                   My shot is tomorrow at 1:00!! Hope these answers help!! Pamela 

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  • ddlatt
    ddlatt Member Posts: 448
    edited January 2009

    sweeetpam, i had the neulasta today. the nurse warmed up the shot and put it in slowly. i didn't feel a thing! it was in my arm.  i asked for emend, but my doctor said he wanted me to substitute kytril for zofran. i picked it up at the pharmacy today, and even with the insurance payment, it was $150 for TWO PILLS. and for some reason they will only give me 2 a MONTH, when i'm supposed to take two a DAY. WTF.  so stupid. so my next recourse is to ask for emend.  thanks for the advice!

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    deanna,

    did you know that ulca sells the anokhiusa scarves at the reflections store?  i bought 2 yesterday....for a total of 5.  i LOVE them!  i think they are $14 or $17 each at ucla. 

    i bought 2 oblong ones but like the square much better!  easier to deal with.

    great colors!  i've bought 2 in the blue tones, 1 purple, 1 pink and another with greens.  so far it seems to be a good mix!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2009

    Lisa ~  No, I didn't know that!  I don't recall ever seeing them there, but I'm not in as often as you are.  Yes, I have a handful of them, and they're great -- so many colors in each one -- they coordinate with everything.    Deanna

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  • BevR
    BevR Member Posts: 101
    edited January 2009

    One down---5 to go! So far so good.....taking it an hour at a time! (or less)

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  • KM47
    KM47 Member Posts: 65
    edited January 2009

    Yay Bev - know what you mean! Hope the "so far so good" continues for you. I'm 26 hours on from my first of six as well and still okay so far.

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    Deanna, they are kept in nice neat drawers.....2 drawers full of square and 2 full of the rectangular (i think i said oblong earlier....chemo brain LOL!)

    they are really nice, wash well and really do coordinate well.  i just lucked into them!

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  • lester63
    lester63 Member Posts: 21
    edited January 2009

    Jas_man - I'm so sorry you are so young and having to go through this.  You seem to have your head in the right place.  Was it Lupron your Dr. was talking about?

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    ddlatt- the drug information on neulasta says only 30% get adverse reactions...the odds are with you.   Sorry you're having a rough time.  It will get better!!!  It will.  Take care of yourself.  Take the medicines they gave you and if you still feel miserable - esp with the headache - call your doctor and ask for medications - there are many choices.

    lester - the anxiety meds work --- I am not a pill taker, but I am taking ativan when I need it to get through this, because it helps so much. I figure, there is no reason to suffer through this when medicine can help. .

    Chrysalis PA - welcome... you are in good company. 

    mimi07 and AZStacy 08 -- Jan 2 Jewels -- how are you doing?

    jas_man I am so sorry for your situation.  It seems your health and the goal of disease free survival has to be a priority.  I believe things happen for a reason, as hard as it is to imagine what that is sometimes.

    To all who are getting through your first cycle ---- you can do this!  

    I feel well on Day 14 - hair is slowly shredding.  WBCs still low but better.  Will have them checked next Friday - if they are in a safe range, then second round of chemo ..if not I wait til they increase.  Hold a good thought for me that they grow and multiply.

    20 below tonight in Northern WI - good thing I have hats!

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  • ChrysalisPa
    ChrysalisPa Member Posts: 2
    edited January 2009

    Hello there everyone,

     It is not my night.  A bad case of wrong click'um and my post in response to all who have posted has disappeared out there somewhere into the great beyond, lala land, wherever it is they go!  And while, I was all wired up not too long ago, I now feel like I am on the fast track to crash and burn here now.  

     I will catch up on here tomorrow barring no bad go arounds with SE's *Keeping fingers crossed*.  So far, just a mild headache, a wee bit of queasiness that comes and goes, and a slight sore throat?  Not sure about that one.  It might have something to do with the fact that I spent a good part of the evening on the telephone with a friend chatting it up at about ninety miles a minute! Steroid induced perhaps. My friend had breast cancer and will celebrate her five year survival this Spring.  It gives hope!

     I hope the SE's are being kind to all.  Everyone having to endure the cold weather, keep warm!  And, I hope we might all sleep easy tonight. I am sure gonna give it my best shot right about now.

    Goodnight all,

     Sandy

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  • kimberlyjo
    kimberlyjo Member Posts: 1
    edited January 2009

    Hello All,

      I'm Kimberly. This is my first post, but I have read and done research since my Dx. Thanks for all your advice and tips. It is really hard to be 35, and going through this alone. BC does not run in my family. Out of four girls, I am the first to get it. My sisters now know they have a 50/50 chance of getting BC before the age of 50. I will be starting Chemo on Tues. I've already looked for wigs. I even called the Pastor of my church to ask permission to wear a hat inside church if the wig does not arrive on time. Smile I hope all my sisters are doing well with their treatment.

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  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited January 2009

    Hi all.  Well I finished my first 20 hours since tx.  I ended up taking compazine and atavan because I felt very nauseated. I guess I didn't expect the nausea so soon.  I am at work now as we speak.  It is Friday so I will sleep the weekend away.  I have face masks for days My wbc coutn is low.  and the kids at home and at school know to wash and disinfect everything atound them.  So far m y husband it very naughty..

    I was doing okay until I swished my mouth out with salt and baking soda, some got in to my stomach, and that is all she wrote!  Whew I held down the sauce butthat was close!

    Km47, I am glad your tx is going well.  Today I feel very sleepy. 

    Hey kim- I am glad you found a post to sound your wastions and ideas.   This is a great place .

    I'll be back

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    Jess,

    Have you tried Biotene mouthwash. It's bland and pretty tolerable. I've been using Biotene toothpaste too and it helped my mouth alot. My mouth felt "weird" - no taste, funny coating, sore - but no sores.  Only lasted about 8 days.   Take your anti-nausea meds on schedule (as often as you can) to stay on top of the nausea.  Hang in there - i am very impressed that you are at work !  

    Kathy  

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    Jess,

    I agree with the Biotene.  I use the toothpaste and the mouthwas 4x per day.  No sores yet....just a "tasteless" taste and my tonuge actually feels kine of limp....or something wierd.   I also drink that throat coat tea to help.  All preventative.  So far, so good.  who really knows!?!??!

    HOpe your day at work goes fast and you are home to rest soon!

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  • ddlatt
    ddlatt Member Posts: 448
    edited January 2009

    all hail kytril! :)  what a difference that drug makes. no headaches, no dizziness, nothing. i actually feel normal - no side effects at all. my doc is giving me free samples until they can work things out with my insurance company. i wish i had thought of asking for free samples before i paid the $150 yesterday for only two pills. but it was worth it.  & so far, no side effects from the neulasta. i'm going to pretend today that i'll feel this way every single day through four months of chemo. is that even possible? i actually feel great. and have been sleeping two hours later than usual in the morning. what a perk! 

    i live in reno and it's still summery weather in january. very strange. no snow. will take a 20-minute walk today. my doc told me i can't go hiking until chemo is over.

    dlb823 - thank you so much for that link to the scarves! they are absolutely gorgeous!

    thank you for all the advice and support as i went through my first chemo. it helped tremendously.

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    just got back from the plastic surgeon (again).  i still have a small open wound on my belly.  i thought it may be infected....but no, just needed to be cleaned up a bit.  its having  a hard time healing whith chemo!  ugh.  i just want it to close up by summer so that i can swim, etc.

    PS says i'll have a scar but he'll fix that later.  whew! 

     day 4 of cycle 2 (T/C)and feeling pretty good otherwise.  hope everyone has a nice weekend!

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Hi all:

    Weathered the first night after 2nd AC treatment. Treatment was over by 12:30 this time, but by 4:30 I called my husband to come home cuz I thought I was gong to pass out from dizziness. It really hit me this time, and my quads and knees felt weak. Better today, but maybe my first accupuncture helped. What a nice environment, with soothing music and just gentleness all around (and no chemo drips!)

    For mouthwash, I put baking soda but no salt (wouldn't that sting!!). I also like the biotene.

    Lisa-I'm sure you'll be fine for summer swimming, and I bet we might even have some hair back, although mine is now falling out by the handful.

    ddlatt-glad the next day after ac is going well. I had about 4 funky days, and then felt pretty good. How come no hiking til after chemo? My NP told me that too (short 20 min walks ok), but i've been stretching it to an hour. It really helps relax me, but i guess they don't want us to overdo it.

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  • ddlatt
    ddlatt Member Posts: 448
    edited January 2009

    lisalisa - glad you feel good on day 4 of cycle 2!

    berkeleykim -  i was used to 2- and 3-hour hikes every day before chemo. doc said he doesn't want me to get that far away from the house nor exert myself that much during chemo. it's weird to have only 20 minutes of walking, but better than nothing.  what are you having in your infusion with the AC? i had zofran and decadron, am changing to kytril and decadron. the zofran just about killed me. 

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Hi Chris and Ddlatt:

    I just saw how much Adriamycin I'm getting. 110 mg! I'm going to ask the dr. why so high. I weigh about 152 (before steroids). The cytoxan is 1100-gads, no wonder I feel like crap for a couple days. But that could be the Avastin/Placebo.

    kim

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  • eadsla
    eadsla Member Posts: 217
    edited January 2009

    Hello to all starting chemo this month.  I started posting last month, but it's been a few weeks so I thought I would join the gang here.  I started my first round of chemo on January 2nd.  I'm doing four rounds of TC every 21 days, so my next round will be next Friday, the 23rd.

    The first round?  Yeah, it kicked my ass a bit.  But it seems so long ago since I've recovered for the most part since then.  Also, there is some solace in knowing it could have gone a lot worse if I hadn't taken the advice I got from these discussion boards: Things like taking Claritin the day of the Neulasta shot.  Also had the Neulasta shot in the stomach. and disn't seem to notice too much of the bone pain I had read about.  Biotene...man, did that save me.  On the worst days, I was swilling that mouthwash 10-12 times a day.  Also, Dan Active yoghurt drink and organic yogurt with pro-biotics really helped with stomach issues.  What did and didn't help was taking Vicodin at the first sign of bone pain--it helped to offset the pain, but it brought on constipation.  I normally take Smooth Move herbal tea for constipation and it failed to have an effect.  I had to rely on Ex Lax, but that then brought on diarhea.

    At the time, I thought I had discovered Dante's lost ring of hell, but a week later, it seems like an episode that happened to someone else...only I know I'll have to get through it three more times.  And being prepared helps, if only psychologically.

    Right now I'm doing the countdown to hair fallout.  I already had my hair cut short as a transitional thing, but seeing no hair on my head is something I'll need to come to terms with.  I was sort of looking forward to buying all sorts of warm and fuzzy hats to wear...but then Los Angeles is in the middle of a heat spurt, so go figure.  I haven't looked into scarves, although a lot of you seem to be finding things that you like.  I've noticed that this week I've been getting headaches, which I rarely got before.  Could this be the beginning signs of hair loss?  

    Regarding the hair loss...I get the feeling that this part of the whole treatment is what is going to bring the breast cancer issue home for me.  Until now, all the appointments, tests, even the lumpectomy were relatively easy things to experience, although I would have rather not had to (well, you all know what I mean).  Even the chemo could be ascribed to one bad week of feeling like crap.  But the hair loss?  And while part of it is vanity, the major part of it is that it will be something tangible that I'll see everytime I see my reflection.  Intellectually, I know it's temporary and it's nothing to be ashamed of, and if I just sit and think it through I convince myself that it's no big deal, and it could certainly be worse.  Just typing it out now, it occurs to me that most of you have already had more challenges just with the surgery aspects of breast cancer.  Yeah, okay, I'll just leave it at that.

    Okay, I think that's it for now.  For the record, I'm 43, live in the Los Angeles area just south of Glendale.  I was diagnosed in October, had a lumpectomy in November...and started chemo this month. 

    Lastly, I am so grateful to have found this site. 

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  • rmsilver
    rmsilver Member Posts: 5
    edited January 2009

    Hi everyone...been following this thread, but first post...

     I had my first tx 1/6 and go next week for my second. I am scheduled to have 4 AC, 4 T, then radiation (but have yet to meet with that dr). I got really sick the first night and was pretty nauseous for 3-4 days (but no more than having morning sickness). I also had a reaction to the compazine (felt like a crackhead, all fidgity, ansty, couldn't sit still or stop moving) and the Zonfran gave me bad headaches...but week 2 has been great, no side effects and feel normal. Will be nice if the rest are like that. I can handle one week on, one week off. Hopefully next time they can give me diff meds and I won't have the reactions. 

    I am 31 yo, happily married. I have 2 little kids, 10.5 months and 3 yr that keep me busy and distracted (altho not well rested, lol) I found the dimpling/lump while nursing the baby. Can't wait to see what the 3 yo says about me being bald :) 

    good luck to all of you! hope to get to know some of you better

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    Welcome eadsla-  There are three, (you make four) January 2 Jewels- mimi07, AZAtacy08, me and now you... all started on Jan 2.  I am scheduled for chemo on the 23rd too... if my WBCs are ok.  Am curious what your "numbers" are in terms of tumor size, stage, ER/'PR status did you have an oncotype dx.   My onc is recommending 6 TC and many of the boerdies here are only getting 4.  Still have to talk to him about that, but I have time.

    rmsilver: welcome to you too.  My heart goes out to you with little ones... I guess the up side is the joy they give you can only help get you through this.

    Day 15 - feel OK except for epigastric pain.  Think I;ll get some prilosec and add that to the cocktail of pills to take.   

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  • eadsla
    eadsla Member Posts: 217
    edited January 2009

    Thanks for the welcome Kt57!  Jan 2 Jewels...I like it!

     Okay, the numbers always make my head spin a bit.  (Also, how do you guys get your numbers listed on your posts?)  I'm just going to go off of my path report:

    tumor size - 1.7, type: ductal, grade II/III, modified Bloom-Richardson score 7/9

    ER+ in 75%, PR- Her-2/Neu Neg

    Ki67 positive in 20% consistent with high proliferative phase

    AJCC TMN stage: T1c N1 MX

    sentinel node clean 0/1

    did not do the oncotype.  I don't think my onc thought it was necessary.

    Honestly, at one point I had all of this explained, and researched here as well, but as I type it out now, it still feels like a foreign language.  From what I understand, the main component that dictated my course of treatment was the Ki67 number.  There were two other factors, but for some reason, the Ki67 seemed to be dominant.

     This week has been one of relative normalcy for me.  Are you still taking meds for side effects?  I hope not...really, the saving grace for me has been that the side effects all came in the first week, but by day 7, I was fatigued but things got better with each passing day.

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Hi all

    Ddlatt-I get Kytril and a steroid in my IV. Last night I was really dizzy and nauseated, so I took an Adivan, then a Reglan (don't remember generic name), then another Adivan sometime during the night. even though I almost had tor crawl the pee since I was so dizzy. Better today--No nausea on day 2 (so far), but maybe that's the accupuncture I have an rx for Zofran, which seems to work for me in pill form, but I'm stashing them since my ins. only covers a certain amt every 21 days. soundly .

    I'm glad you newcomers have found us, but sad too. These boards are a great help, I think.

    Well, I think I'll shave my head for my birthday tomorrow, and then pick up my new boob.

    kim

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  • ddlatt
    ddlatt Member Posts: 448
    edited January 2009

    <<Well, I think I'll shave my head for my birthday tomorrow, and then pick up my new boob.>>

    berkeleykim - four months ago i would have wondered what in the world this would mean. now it feels familiar and funny. happy birthday tomorrow!!

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