Starting Chemo in June 2005

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  • Watson
    Watson Member Posts: 1,490
    edited July 2005
    Hey Junebugs,
    I refuse to whine anymore.

    Brenda, you can take me OFF the list for this weeks chemo. My neutrifils (sp) were too low today (1.3 and must have minimum of 1.5) and I now have to go every FOUR weeks for my treatment. I also have a viral infection that would have prevented me from getting chemo this week. I think I should join the September group so I can finish with them.
    Funny how I wanted to start every two weeks and now I'm pushed to every 4 for a while. She said after my third chemo in August! we can re evaluate.

    So, yes I'm bummed, but whatever! at this point.

    Well at least I lost 5lbs since last visit . Only 30 more to go to resemble the human form.

    I"ll be thinking of you ladies!
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  • MichelleB39
    MichelleB39 Member Posts: 51
    edited July 2005
    Whew! That was a scare. I found out Neulasta is not a pharmacy covered benefit but a home health care nurse must come to my home to administer it. Anyway, that God it is covered!!!

    Watson, I know you are bummed. I was too yesterday. I was all psyched up to have the "whammo" treatment, only to find out my white count was too low. They put me off until next Tuesday and I'll get a shot of Neulasta after each treatment from now on. I'm bummed too. If I had gotten my chemo yesterday, I would be half way done now. The good news is that they can now put me on an every 2 week dose and the shots following the next day.

    Hope everyone else's day is bright!
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  • Analemma
    Analemma Member Posts: 1,622
    edited July 2005

    Michelle, is that $22,000 PER injection???? Holy Cow!!!That can't really be for each one, can it? I need to buy stock!!!

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  • MichelleB39
    MichelleB39 Member Posts: 51
    edited July 2005
    I think we all need to buy stock in this drug! What a racket!

    I "assume" it was for a vial of it if it was coming from the pharmacy. Thank God that all got straightened out. I don't know how people can pay for this stuff without insurance!!
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  • saleboat
    saleboat Member Posts: 71
    edited July 2005
    In case anyone is interested, there is an article in today's New York Times regarding cost and cancer drugs. You may have to register (no cost) to read it. It doesn't highlight any new therapies, but is more focused on the price of them and the resulting moral questions. I've provided the link below. There's also an article about Herceptin in today's Wall Street Journal if you can get your hands on a copy-- the online is by paid subscription only. Again, it is interesting, but no new news for us pros.

    Good luck to everyone this week-- I'm oh so looking forward to A/C #3 this Friday! Whoo whee--- I've really been missing that yummy dirt taste!


    http://www.nytimes.com/2005/07/12/business/12cancer.html?th&emc=th
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  • Analemma
    Analemma Member Posts: 1,622
    edited July 2005
    Is it just me, or does anyone else feel good the next day after chemo? I worked all day today, though not enough energy to go to Jazzercise, I did shop and run errands, mowed the grass around the garden, and worked in my studio about 5 hours. Tomorrow I will be so sore from Neulasta) and tired I'll lie around all day. Is it the steroids? Or is it just that it takes longer for it to hit me? I always think that if I feel like working, I'd better work, because I won't be able to later. But from the rest of you ladies, it sounds like the day after chemo is bad for most of you. For me, it's the third, fourth, and fifth days (counting chemo day as #1)that are the worst.

    Michell and Watson, so sorry about your luck! We dread these treatments, but just want to get them over with!!! It stinks to have any delay, even if it does give us time to recover. Good luck, feel better.

    Brenda
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  • cnmpam
    cnmpam Member Posts: 15
    edited July 2005
    I am new at this thing too have gotten my second infusion of Taxotere last Thurs. I think...at least so far my worst days are 4-5. This time I had the nulestra which gave me such bone pain. I wish you were close by so I could have some one get me to aerobics class! I use to exercise as a passion and since this I s it around all day.
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  • rmmom
    rmmom Member Posts: 168
    edited July 2005
    KimB
    we are probably in similar trials-I got the 16 weeks a/c and 12 weeks taxol. I had week 6 yesterday. I haven't been too bad but if they are looking to eliminate exhaustion not working with this girl. I got a phone call from head of my preschool committee and had to tell her I needed the year off. I smiply can't give half of myself to those five year olds. THAT made me cry like a baby. I have only shed heart tears or silent ones as dh really really doesn't like crying-told me on the way to my grandmother's funeral "you are married to me now the women in my family NEVER CRY" Well this ugly tar monster from a Star Trak scene laughed at me(that how I view the bc). Teaching is not my job or my career it is my passion! I breathe it.
    I am so angry! I hate this stupid disease. I hate that the meds make me unable to even spell my name on the really bad days. Now I upset that I am wasting all this space venting!! Sometimes life is an ice cone that loses all the ice cream :
    P.S watson-you better not join the august group or anyone else that had to wait until for treatment until their counts or up. I need all of your to help me fight this nasty monster. I pray the shots help and you get your other meds soon. Bev
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  • LizFL
    LizFL Member Posts: 377
    edited July 2005
    Watson...you CAN'T leave us! Just not allowed



    When I got my neulasta shot last week the nurse had trouble opening the package it comes in, and made the comment that she thinks it's so expensive because of the packaging...little did I know just how expensive!



    I thought I was getting my cast off today...but bummer..have to have it for another month. I am right handed and it's my right hand that has the fracture...no fair! I think the healing is going slow due to chemo.



    I seem to get some energy when the steroids hit...but it seems to show itself in lack of sleep more than getting anything accomplished!



    Whoever mentioned forgetting things with all the drugs...I could not think of my social security # the other day...I've only had it since I was 14...couldn't believe that I couldn't remember it!



    Brenda..you are great at keeping track of everyone. Good luck to all of this week's camp chemo ladies!



    PS...now I know what you all mean about seeing all the hair in the shower drain...ugh!



    Hugs,

    Liz
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  • Watson
    Watson Member Posts: 1,490
    edited July 2005
    Hey Junebugs,
    I'm not going anywhere. You can't get rid of me if you tried! I'm doing better with it now. I'm calling onc tomorrow with some follow up questions.

    Liz, you'd feel better if you just went ahead and shaved it. I was stressing big time before, but was sooooo glad after I did it.

    Brenda,
    I could have gone out and lifted cars the day after my first (and only ) chemo. They told me it was the steroids.

    Thanks to all of you helping me to keep my chin up.

    Thanks!
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  • kimBe
    kimBe Member Posts: 101
    edited July 2005
    Let me see if I can remember some of what I have read...Bev-am sure you and I are in the same study-there were 4 "arms" and yours and mine were both there-placed randomly-the benefit of the study is that Neulasta is a "covered drug"-I did not have a clue what the Dr meant by that would make the insurance company happy-now I do-and before my 2nd chemo my neutro's were really low-but fortunately I was able to keep on schedule by taking an antibiotic every other week....so can imagine where I would be without Neulasta. I also do very well the day after chemo but either day 3 or 4 or both is when I do nothing! Which fortunately is Saturday or Sunday and then I lucked out with #3 (which from other posts seems to be the worst one) I had the fourth of July off too. Am just hoping that #4 goes okay as I have a neice getting married at East Glacier and my husband will probably be out of town still working so feel like I need to make a real effort to go, but then have to leave Tuesday after work to go to my son's wedding in Seattle and am NOT missing that so keeping my fingers crossed. And I actually think I am feeling much better since #3 than I ever did after #1 or #2. I do think that drinking fluids is very much a key for me! Take care
    KimB
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2005
    Haha! I had the CLEANEST CLOSETS and GARAGE on steroids! I never got so much accomplished in my life!

    Be careful though- the higher you go the harder you fall- meaning- you may feel like repaving the driveway but when you stop the decadron you will feel like the driveway paved over you!

    And Liz- there is a condition that has been documented called Chemobrain. I can't remember my name half the time.
    Start making lists! REALLY!!!

    AND JOMAC! GOOD LUCK TOMORROW!!! THE LAST RED DEVIL! Yippee!!! Hey girls- you know that they can NEVER give you A/C again?! Isn't that a great rule!

    Good luck to all the other girls this week as well- and don't worry if you are forced to take a chemo break don't worry- they remember and make you come back!

    Kim I was just thinking too bad with all this "global warming" East Glacier can't come to YOU for the wedding!
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  • Analemma
    Analemma Member Posts: 1,622
    edited July 2005

    UUGH! Someone please remind me why I keep going back for more???

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  • rmmom
    rmmom Member Posts: 168
    edited July 2005
    a question for nosurrender or anyone else
    Has anyone else been getting hiccups-all the time? This just started in the last week and a half. I drink water in the morning and hiccup my way through breakfast. I hiccup through midday and last night for over a hour. Every time I drink anything-hiccups. I am just strange?
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  • rmmom
    rmmom Member Posts: 168
    edited July 2005
    Brenda
    So we never have to do this again! And we get to sit on a porch at sunset when we are really really old
    Hang in there!
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  • danahollis
    danahollis Member Posts: 161
    edited July 2005
    Hi Junies!



    Oh yeah... my Neulasta shot costs only $10,700 or so... I must be getting a bargain! Ya know... I thought it was "standard" to get the shot the day after treatment on a dose dense cycle. I don't see how our bodies could handle it any other way. That AC is some POWERFUL stuff.



    Here's what I seem to experience. Treatment day is usually ok for me. I feel a little icky from the Cytoxin... I seem to be sensative to it even though we've tried to slow up the drip. It really bothers my sinuses. I'm getting shivers just thinking about it... Oh yuck I hate that stuff!



    Day 2 I'm not that bad... I'm still able to function just fine... but I think mentally I'm getting prepared for what's ahead. Day 3 I start feeling HUNGOVER really bad. It's the beginning of my bedridden days. Days 4 and 5 are the same. By day 6 I'm felling less hungover, but I am so fatigued I can't even shower without feeling weak. I think that my immunity is at it's lowest at that point and the effects of the drugs are at their worst. Day 7 is just like Day 6, but I'm even more emotionally wrecked. I have thoughts of never doing it again and I think I'll never feel normal. I think about if I had to do this forever, I don't think I could. Then Day 8... TODAY!... and I'm feeling much better. I'm up out of bed, dressed and WIGGED.



    That's my pattern... I have one AC left on July 20. Then I'm on to 4 Taxols. My Oncologist wants to see me get through at least 1. I had no positive nodes and am Stage 1, so it's not a "mandatory" treament for me. To tell you all the truth, I'm scared senseless just thinking about it. I really don't now if I want to do it or not. I'm tired of feeling bad and I just want this to be done with.



    I still have a hysterectomy looming over my head when this breast cancer treatment is done so I don't end up with cervical cancer, too. It's just all too overwhelming. One day at a time, right?



    Ya know, I get so much strength from you ladies. I have learned that I have a very low pain/discomfort tolerance... and without you all I'd be so whiney!!! You are an awesome group.



    Our treatments aren't going to be over with anytime real soon I think we should stick together and keep this thread going as long as we need to. Nobody will be left behind!



    No Surrender... you truly are a wonderful person for taking us under your wing and seeing us through this. We so much appreciate your time and thoughts. THANK YOU!!!



    Anyway, I'm going to go try to accomplish something today.



    I'll be thinking of you all and sending good vibes!



    HUGS!

    Dana
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  • rmmom
    rmmom Member Posts: 168
    edited July 2005
    Dana
    I am glad you are feeling better-please don't think you you have a low pain/discomfort tolerance just because you are having a harder time of it. It is how your body is reacting to all this poison. Doesn't mean you aren't any less stronger than any of us. I was thinking of this after my husband dropped a two pound on the top of his foot. His entire foot turned purple-had x-ray and found nothing-but everytime he gets a bump his body overreacts and it isn't a little bruise-it looks like he was in a fight. And he isn't a bleeder. Just how his body reacts to things.
    Good news I am going to parent conference with hubby for oldest son. Not much but get to leave overnight for two nights.
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  • MichelleB39
    MichelleB39 Member Posts: 51
    edited July 2005

    It seems I am allergic to things that I wasn't allergic to before, just like NoSurrender said. I woke up this morning with a rash all over. I called my onc and went in to have him take a look. The only thing I can think of is we had a bunch of boiled shrimp for dinner last night. I had a couple on Saturday night with no problem. Last night I had lots and I guess it is effecting me. Has anyone else broken out with a rash yet?

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  • danahollis
    danahollis Member Posts: 161
    edited July 2005
    Michelle... no, no rashes. But I am way more sensitive to bug bites. The Minnsota state bird...the mosquito,(LOL!!!)really leaves marks on me. I think every little nick or scrape I've received since starting chemo seems to leave a new freckle instead of healing up nicely. I feel like I have a million new freckles. My skin is very dry also.

    Well, today I actually left the house to go pick up my son's friend so they could hang out. He's been so good to me and he needs some "play" time. He just turned 13 on July 1st and I still can't give him an answer as to when he can have his sleepover party. It makes me feel bad to deny him but I'm just not ready for a house full of boys. This is so tough on everyone. My Dear Husband sure gets the brunt of it. At least he can escape to work for a little while! Thanks goodness there will be an end to this!

    Thanks for supporting me, Junies!

    HUGS to all!
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  • Jenster
    Jenster Member Posts: 267
    edited July 2005
    Finished with #3 AC today!! Woo hoo!!! Now I just have one more AC on August 4th and then I'll start Taxotere. I haven't had any problems, other than some slight sinus problems, though I notice it seems to be an accumulative effect because it's a little bit worse each time.

    I'm usually sleepy later in the day after chemo and then for about two days. By the third day I'm feeling good again and that's that until the next go around. For the most part. I really hope it goes this way this time, too, because I'm leaving for a two day drive (my folks are driving) tomorrow to go visit my husband for a few days.

    And Dana - I know what you mean about feeling bad about denying your son certain things. I have a 13-year-old son and a 10-year-old daughter and this summer is just not what they'd like it to be. Especially since their dad is only here on the weekends. But I think our children are awfully resilient and they're old enough to understand this TEMPORARY situation. And I also truly believe it will build character in them like nothing else.

    I just love this board! And especially this post. Thanks to all of you!
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  • LizFL
    LizFL Member Posts: 377
    edited July 2005
    CONGRATULATIONS JEN! Must feel good to have only one more A/C!

    Felt kind of out of it today and very tired and achy...left work early. We finally shaved the head today...when we were done...my husband and I looked at each other and said "conehead" at the same time. Don't know how may of you remember the coneheads from the old Saturday Night Live show. Too bad it wasn't Halloween...wouldn't have to try hard to come up with a costume! Feels better than shedding!

    Liz
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  • Jenster
    Jenster Member Posts: 267
    edited July 2005
    LOL Liz. Did you "consume mass quantities of beer?" (Obviously, I know exactly who the coneheads are. Does that date me??)

    My friends buzzed my hair about two days before it decided to fall out. (that after giving me a skater cut and a mohawk) But not all of it fell out. So I still have a buzz. My husband has a buzz, too, and last weekend my son took a picture of us cuddling on the couch. We laughed and said, "who's who?" Thankfully my head is much smaller than his, though! lol.

    Yup! I'm happy to say that I'm now over 1/3 done with my total treatment. YIPPY!!
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  • kimBe
    kimBe Member Posts: 101
    edited July 2005
    I am jealous of you that at least look like a conehead, mine seems more like a pinhead, but I actually think my hair is growing-my daughter agreed but wouldn't touch it and dh is out of town for work. Chemo #4 tomorrow and then I will be 2/3 of the way through the first half...Hope that all went well for JoMac today. Have a feeling that tomorrow is going to go well for me. I have a gazillion things to do tonight so better not stay here long.
    KimB
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  • LizFL
    LizFL Member Posts: 377
    edited July 2005
    Kim ...2/3 of the way through the first half sounds good! We sound like a bunch of kids counting the time until our birthdays. The end of chemo treatments will be like a birthday!

    I hope JoMac is feeling ok...Hurrah...you are done with AC!!!!!!!!!

    Next week will be # 3 for me and I will be 3/4 the way through that and 3/8 done for the total!

    Feel better this AM, but strange to run my hand over my fuzzy head.

    Jen..forgot about the "mass quantities of beer"...somehow the thought of that with "mass quantities of chemo" doesn't quite impress my tummy!

    My son-in-law, who is almost bald...offered to shave his head for me just to tease my husband who has a full head of hair

    For all those under the sea this week...hope Towanda brings you some scuba gear!

    Hugs,
    Liz
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  • Analemma
    Analemma Member Posts: 1,622
    edited July 2005
    Well, at least we're all practicing our fractions - LOL! I'm glad I was warned that #3 was often the worst. Yesterday was miserable. This is the first time i actually stayed in bed almost all day, didn't even get dressed. And weepy! I felt so sorry and sad that I was on the verge of tears all day. Poor DH came home at lunch time and felt so helpless. He told me later that a coworker asked after he got back in the afternoon if everything was ok - I guess he was that concerned that it showed on his face. But I'm feeling almost human today and hope I can get some pots glazed and started firing for the weekend.

    Today I'm wearing tie-dye (old hippies never die, they just go underground) and I found the website from the folks that I have bought stuff from. I ordered a couple of tie-dye bandanas. It's www.swva.net/fittobetied . I still haven't worn the wig, only bandanas. But I have and advantage that I don't have to go to an office to work, I'm sure I'd have to do the wig there. I keep putting it on and just can't stand the feel of it.

    Home health care sent my Neulasta twice - same prescription #, same invoice #. Maybe I should auction it on Ebay??? Actually, I did call to get it straightened out. You'd think, at $5K a pop, they'd be more careful, wouldn't you?

    So my computer decided to update and I hadn't saved the SS of all of our treatments. Have to start all over!

    Brenda
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  • Fi_in_oz
    Fi_in_oz Member Posts: 49
    edited July 2005
    Hi Ladies,

    Just checking in, whilst I'm up for air.

    There is beauty on the edges of this path I'm stumbling along. So many "little things" that remind me why I'm doing chemo etc, and want to live at least another 10 to 70 years or so.

    There are hugs, from unexpected sources each time I make it up the street.

    Smiles, each time I smile at an "is that Fi" stare.

    There's the girlfriend who flew 1500kms to spend her holidays with me, instead of being home every night for her partner.

    There's my son, who taps me one the head and mischeviously asks "whatcha doing baldy"

    And there's the vege patch under construction, in my back yard, that wasn't there just a few days ago, lovingly created by my father, in between checking on me sleeping off the second round...

    I could go on, and on, listing the beautiful little things... however, I'll just say, they are what keeps me on track when my mind wants me to pick up the phone and tell the oncologist I'm not going to play this chemo game any more. And more than once, I've felt almost privileged.... to be gaining wisdom and so so much more, if that can possibly make sense.

    Oh and I'm ever so curious, if what doesn't kill us makes us stronger, lordy, next year, and all the other years, just how bloody strong am I going to be.

    Hoping you all are blessed with the beautiful moments too

    Fi

    (yes short for Fiona, I remember someone asking that back on about page 5 of this thread I think)
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  • MichelleB39
    MichelleB39 Member Posts: 51
    edited July 2005
    Sounds like we are all a lot alike. My husband shaved his head with me and we called each other cone heads. Too bad I don't feel like consuming mass quantities of beer. My head is smooth in some places and it feels like a beard in others. I guess it is growing back, but not all over.

    Jo Mac- I hope you are feeling better. Knowing that you are finished is a like a light at the end of the tunnell!

    Brenda- with the cost of the Neulasta, I bet we could find it on Ebay. My husband found it on a Canadian website for $4000 less than my $23,000!
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  • NancyM
    NancyM Member Posts: 289
    edited July 2005
    Good morning June Bugs! I was just sitting here, dreading going to chemo #3 today when I read Fi's wonderful post. It was just what I needed to be able to calm myself down and refocus on the good instead of the bad. Thanks, Fi!

    I'm always happy to hear when someone is doing well, and yet when someone posts about having a bad day then I know I'm not alone. I guess we need both sides of the story to make it through this. Right now my thumbnails are very tender...what a wacky side effect.

    Today when the nurse turns her back I'm going to grab as much Neulasta as I can so you guys with no insurance will be getting a "surprise" in the mail....haha....

    oh, I better say I'm just joking in case the FBI is monitoring....

    Enough goofing off...I have dishes to do....I hope you all have a wonderful day! rock on....
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2005
    Hello ScubaJunesters!

    I want you to imagine this the next time you think

    1. Why the F am I doing this to myself?
    2. I wish I could strangle my onc
    3. Maybe if I change my name and move the cancer won't be able to find me and I won't have to finish this torture...
    4. I am so sick of being sick and I wasn't sick to begin with the medicine made me sick and that is just plain SICK!
    5. Calgon take me away!

    This morning I had to get up at the buttcrack of dawn to go to the doctor. This is the one doctor I am scared of. This is the place where it all started. This is the place that I know if IT is going to show up it will probably be here...

    My six month mammo/sono....

    But wait- I did chemo- while it is no absolute guarantee why am I worried? Well I had a very aggressive cancer and it was very fast growing and starting on the chest wall- but wait- that is why they said I REALLY had to do chemo and why I had to go back EVERY TIME for 8 sessions of SIX endless months...

    But the months did end. Hair grew back. I lost the chemo weight. Did I lose the cancer cells too?

    Apparently TODAY there are none in my breasts. ALL CLEAR. Geez! Every doctor says I am "high risk"- but then they say - "but you did chemo right?" ...

    So when I am sent home with a get out of jail free card instead of the follow-up-biopsy-nightmare card it gets me thinking....

    In September it will be four years. FOUR. I had a really bad cancer. Sweeties- there is something to this chemo. For all the bad it puts you through- here I am- with an all clear for today. I don't know what will happen on my next six month check up- but when I worry I will just remind myself- I did chemo.

    HANG IN THERE- IT IS WORTH IT.
    Love to you all,
    NOSURRENDER- EVER!
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  • MichelleB39
    MichelleB39 Member Posts: 51
    edited July 2005

    NoSurrender- what great news! It makes this awful chemo seem worthwhile. I am doing this to improve my chances 3-4%. It doesn't seem like a lot, but I will take whatever they give me!

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