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Taxotere, Carboplatin and Herceptin

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Comments

  • shelbaroni
    shelbaroni Member Posts: 350
    edited June 2008

    Nan and Aly...thanks for the votes of confidence on the hair. It looks really cute with hats and do-rags, too. I prefer it long, but it's a lot better than not having hair at all. It's interesting how everyone differs in their hair loss patterns and amounts. I've been on a pretty supplement-heavy nutritional program with lots of essential fatty acids. It's going to be interesting to see if that has any impact on the hair/nail issues. Aly...it sounds like you're really not getting hit too badly so far. I know once Thursday rolls around, I'm going to try and do as many normal things as possible without too much sitting around waiting for the other shoe to drop. Some of your nasty mouth taste could be the fact that you've had a sinus infection (which always causes me to have a foul taste). Also, when I was having periods (which I haven't for a couple years), I remember always having a funky taste in my mouth the day before and the day it started. Interesting how that stuff happens.

  • AlyMarie
    AlyMarie Member Posts: 192
    edited June 2008

    Well I'm not having the greatest day today - I'm very tired and feeling weak, kind of like having the flu without the fever but I'm mostly Ok.  I went in for my Neulasta shot a little while ago so I'm waiting to see how that affects me.  I think I might have hit on the nausea med combo that is finally loosening the knot in the pit of my stomach so that's a good thing.  At least I haven't thrown up, thank God for that.  No diarrhea or constipation either (yaay!).

    Hang in there!

  • TF80209
    TF80209 Member Posts: 83
    edited June 2008

    I wanted to give my encouragement to those of you just starting out or soon to be starting chemo. It sounds like you are all prepared and ready to handle whatever comes your way. I personally felt having an 18 week pity party was justified so don't feel bad when you get in a funk because the treatments are making you feel bad when the cancer was not. I just wanted to be in a bad mood at times and whine -- people who tried to cheer me up usually got a response like "you've never been through chemo, have you?" On a brighter note, I did survive it all and feel like life is returning back to normal, which I doubted it ever would.

    Hair loss: I knew it was coming because my head hurt -- your follicles are warning you that something is happening. 13 days after my first treatment, the pubic hair started to fall out. I didn't lose it all, but about 80%. Around that time my hair started coming out in singles but I made it through to day 16 before the clumps started coming out. On that day I stood in the back yard pulling big hunks of hair out of my head. It was traumatic even though I did have short hair anyway and got it cut shorter in preparation. I "only" lost about 90% of my hair and decided not to shave my head because I didn't want razor stubbles. I faithfully washed and combed the few strands I had left. In December, I even had to trim them. After my last treatment, I cut the remaining hair really short so I would notice when the new stuff came in. I wore hats and bandanas, settling in on hats for the most part. Luckily it was winter and I didn't look too out of place wearing a hat in grocery stores and other places.

    I did have to shave a couple of times during treatments; the pits were the last hairs to give up the ghost. The hair on my head came back first, followed by the legs, pits and lastly the pubes.

    My hair is not even an inch long (last treatment Jan. 07, 2008). My doc says it looks thick. At least my scalp is covered. It looks like Shelbroni's new haircut. Half the time I'm called "sir" the other half "ma'am". I was complemented on my "haircut" this weekend while visiting my brother in Charleston. It was hot and humid and a vendor at the farmer's market thought my haircut was ideal for the weather. I guess if I have to have boy hair, the summer is the time to have it. So far the back and sides aren't out of control compared to the top. I don't think I ever lost my arm hair but that has always been blond so it's hard to tell. I do think the hair on my legs and pits is growing slower than it used to (some compensation for the head also growing soooooo sloooooooowwww). I lost my eyelashes after my last treatment. I now have some new spikes but they are quite short. My eyebrows have continued to thin and just recently I've had to fill them in with an eyebrow pencil. I have some dark hairs on the inner part and the outer corners have turned blond so it looks like I really don't have much brow there. If this keeps up I'll consider getting some tatooed on.

    I had my last period right after my first treamtment on schedule. I haven't had one since. I was 44 at the time so my onc thinks I won't get it back. That is fine with me. I don't want to have to go through menopause twice.

    The bad taste -- I used biotene mouthwash which helped somewhat but since I also had to down 64 oz. of water a day it didn't seem the ideal solution for me. I ended up chewing a lot of Orbit gum (the various mint flavors) during the week or so that my mouth tasted like a sewer. As mentioned, as the treatments wore on, sewer mouth started sooner and lasted longer.

    One other bit of advice. My chemo teach nurse suggested tea tree oil and udderly smooth for the nails. I would use a q-tip to paint the tea tree oil on my nails. Hands and feet. I stopped doing it after my last chemo and now think I should have kept it up. Now my nails are brittle and splitting as the parts that were affected grow out.

    Terri.

  • cinrae123
    cinrae123 Member Posts: 211
    edited June 2008

    Hey ladies.  Hang in there girls.  You are doing a great job.

    hmmmmm bad taste in mouth?  Well for me,,,,,,,it lasted like two weeks after each chemo, got a little better during the last week just in time for chemo again.  But it will all go away after chemo.  I got a prescription for I think it was called Miracle mouthwash.  Not sure if it really helped,,,,,,,,,it just made my mouth numb for a little while.

    And the hair issue...........I started losing my hair about 2 1/2 weeks after my first chemo.  I ended up shaving it as it was just too depressing for me having in come out in clumps.  I lost my pubic hairs, underarm hairs, hair on legs and eyelashes and some of my eyebrows.  But its all coming back in,,,,although the head is very slow.  lol  I had radiation on my left breast and I dont have any underarm hairs on the left underarm.  Shoot,,,,,if I would have known that they would not come back, I would have had them zap the right underarm too.  lol

    Take care girls.  Stay on top of those side effects ok??

    Cindy

  • shelbaroni
    shelbaroni Member Posts: 350
    edited June 2008

    Well, I'm two days out from my first treatment (less than that now). Had my physical yesterday, and everything looks strong going in. I've sort of been training for this like one of my duathlons or half marathons or something. Weird, huh? I have my echo tomorrow: at last I'll find out whether or not I have a heart. Then I'm going to get a manicure/pedicure and go look for a fierce pantsuit to wear to my school graduation Saturday to go with my hair...which walks the line between Annie Lennox and a blue-eyed Grace Jones when I spike the front. While it sounds like I'm having fun, I'm just trying to distract myself from the terror I'm feeling inside. I'll keep you posted. Stay strong, everyone. My prayers are with you. By the way, have any of you done a 3 Day walk? I'm registered to do the San Diego one in November. I'll be done with everything except the H and the pretty part of my rebuild by then. Should be fun...something to look forward to.

  • Poppy_Spruce
    Poppy_Spruce Member Posts: 85
    edited June 2008

    Hey, Shel,

    Fear is a constant companion for all of us on this journey. It rears it's ugly head just when we think we finally got our footing. But I'll tell ya this - cancer didn't get you and neither will fear.

    You are an amazingly strong and vibrant woman - you wear me out just reading about your life! But you are a testimony to what surviving is all about - we take our treatments and we live our lives and we stop to help others along the way.

    I'm glad that fear isn't the only companion I have on this journey. Thanks for being Annie Lennox and Grace Jones all wrapped up in a wonderful woman! ((HUGS))

  • tomatojuice
    tomatojuice Member Posts: 9
    edited June 2008

    Going in for treatment #3. TCH. Haven't posted in a while. Had great week lthis past week. Feel scared all over the place.My onc that I trust so much is leaving the hospital. Now I have to deal with new doctor. Most of my stupid fear is-how do they access the port-I can't figure it out.Totally sort of freaks me out when they plug me in. Also going alonr this time. My son will pick me up. Sending out hugs to everyone, and an easy time through all this.

  • TF80209
    TF80209 Member Posts: 83
    edited June 2008

    Tomatojuice: Congratulations on being halfway done! You are on the downhill side now.

    I know what you mean about port access. I always have to look away. I had a new nurse on Monday doing my Herceptin and she didn't put a coban bandage around the needle in the port like the other nurses usually do. I had to ask her to put one on my arm so i didn't have to look at it.

    I hope you are able to get another onc that you like and trust. It is very scary to be switching doctors at this point.

    Terri.

  • kimbly
    kimbly Member Posts: 46
    edited June 2008

    I haven't posted on this thread in ages..... Glad everyone is stlll plugging along and doing as well as can be expected.  I am now 2 months  post chemo and feel great.  I would say my energy level is back to normal even.  My hair however is not. It is growing in like crazy but all different lengths etc.. I liked the Annie Lenox etc comparison because that is how I feel.  I normally wear contacts but just got these new glasses for my non-contact wearing moments.  My husband compared me to Annie Lenox too funny guy I say.  I am not sure what I will do with my hair as it is growing in.  I am so impatient though and am so tired of wigging it all the time in public.  *sigh* 

    The herceptin only treatments are going well with virtually no SE so I am happy about that.  My surgery went well and the expander is now filled to where I want it.  I wait now for 3 months before seeing my PS again and then we shall see when the exchange takes place.  I didn't have too much pain, at least nothing that was manageable.  

    I do get these waves of fear every once in awhile too. I wonder if those ever go away?????  

    Most of the time though I am positive and just try to live life to the fullest.  I am walking 3 miles a day and doing a little yoga which I love (compared to some this is nothing though) LOL.  I need to add some weight/strength training.  I have never been athleteic so this is really something for me!  I am now addicted to walking btw LOL 

    What is Biotin?? 

    Hug to everyone!  

  • AlyMarie
    AlyMarie Member Posts: 192
    edited June 2008

    Hi everybody. Just a quick post today in hopes of some advice. I came down pretty severely ill on Sunday/Monday and am now so weak that I can barely move.  It took me 3 hours to get out of bed, showered and downstairs today. My body is wracked with major pain I'm assuming from the Neulasta but this is well past the "achy joints" I was told I would probably get - this is debilitating pain and I can barely make it to the bathroom and back, that is all the strength I can muster at a time.  I called the doc yesterday and pretty much got the "drink fluids and rest" speech but at this point, I'm pretty frightened.  I don't want to scare anybody else by any means but can anyone offer some input on whether I'm supposed to feel this way or if I should be calling the doc again and heading in? 

  • Poppy_Spruce
    Poppy_Spruce Member Posts: 85
    edited June 2008

    Aly: I would call them again and let them know how weak and achy you are. It could very well be that you are getting hit pretty hard with the fatique from chemo and the pain from the Neulasta. They might do nothing but give you the same advice, so them how long should you try the rest and fluid thing before getting concerned.

    How many days past treatment are you? How many treatments have you had? Keep us posted.

    Kimbly: Good to hear from you again. I hear ya bout the slow hair growth. I was hoping (although it might be unrealistic) that at this point (about 7 months after the last treatment) that my hair would be shlouder length. It is doing alright (about 2 1/2 inches on top and 3 inches on the sides) but unless I wake up with my old hair back - I won't be happy.

    Biotin is a vitmain-B supplement that helps with hair and nail growth. I have been on the high potency-stuff since October. I am hoping that once I finish Herceptin - the growth will really take off.

  • AlyMarie
    AlyMarie Member Posts: 192
    edited June 2008

    This is only my first treatment and I had it on Friday so this is my 5th day. It seems like I should be getting better by now.  I will give them a call.  I can't see going through this 5 more times. Thanks.

  • Poppy_Spruce
    Poppy_Spruce Member Posts: 85
    edited June 2008

    Hey Aly,

    Hang in there, girl. It sounds like you are having a doosie of a reaction. It is not uncommon for the taxotere especially to drain your energy. Chemo works in a cycle, and the worst days are usually 3 -5 days out.

    Take it easy and stick with those fluids! I always drank a lot the day before, the day of and the day after my treatments. My thought was to flush out the "extra" chemo so it wasn't hanging around my system making me feel icky.

    We think that since we escaped The Red Devil (Adriamycin) that this should be easy. But the truth is, we still need this toxic poison in our bodies to do a very good thing...which is kill the cancer. Unfortunately, as poison tends to do, it has undesireble effects that can knock us on our butts. make sure that you have a soft place to land and get the rest and fluids your body is asking for.

    You might not have to deal with this five more times. The Neulasta will take hold and hopefully start building up your counts which will in turn help with the fatique.

    Feel better ((HUGS))

  • suemed8749
    suemed8749 Member Posts: 210
    edited June 2008

    Aly: I'm so sorry that you've had such a bad reaction to tx#1. I would definitely call and find out how long this is going to last. I get treatments on Tuesdays, and usually feel better on Sunday. I hate the Neulasta aches, but yours sounds way more severe than what I get. Nanegge is right - you might not have to deal with this every time. That's the point of the Neulasta. Your red count may also be low, and that will also contribute to the fatigue. Take it easy, and I hope you feel better soon.

    Shelbaroni: Good luck to you tomorrow!!!! Take things to read or a movie on your laptop - the first time takes forever since they give you everything super slowly to make sure you don't have an allergic reaction. The Benadryl might knock you out and you can take a nap if you're lucky. You'll do fine.

    Husband and I just got back from a few nights in Sedona. It was so nice - and I did a 5-6 mile hike yesterday and a brisk 2-miler today (had to be someplace at one or we would have gone longer.) Week 3 of the cycle is always the best. I ate like a pig and everything tasted great. Tx 3 is next Tuesday - I'm on the downhill slide!

    Best wishes to everybody -

    Sue

  • shelbaroni
    shelbaroni Member Posts: 350
    edited June 2008

    Aly--I'll send a few SOS's upstairs on your behalf tonight. And Sue...thanks for the blessing on tomorrow. I'm actually excited to get it on...it took so long to get everything lined up and all. I had the echo today- found out I actually have a heart; but don't tell anyone- might hurt my rep. Got a spa mani-pedi and went shopping at Macy's. Then to the Little League park for a play off game. Saw my "poisoner" to ask questions today. I think it's a trip that he's in Suite 420 of his building. LOL. He said I could take photos in the infusion room and that I could shoot him (with my camera). I think I'll paint him. He might be nicer to me:) I'll let you know how tomorrow goes. Sue...good to know that people feel like hiking and stuff on chemo, since I'm planning to keep up some level of exercise, even if it's nothing like I've been used to. I just want to keep writing and savoring. This might be the last night I feel good for a really long time. Should have had something more interesting for dinner than split pea soup, huh? I feel a little buzzed up today. Could it be that steroid stuff we have to take?

  • Poppy_Spruce
    Poppy_Spruce Member Posts: 85
    edited June 2008

    Oh, dear Lord, I forgot about the steroids! Are we all prepared for Shel on steroids? She will be running her marathons tonight - in fact, she just might jog home from her treatment! Wink

    Of course, you know, Shel, that I am just teasing you. The steroids buzzed me up good the night before and the night of treatments. I was up all night and totally wired. I took advantage of it and used to the time to write papers and create my PowerPoint presentations for my masters degree. I did on-line classes and worked on Learning Teams and my classmates would tease me about how much better I was hopped up on drugs. I have to admit - I created some pretty amazing things. maybe your best writing and savoring is yet to come!

    Thoughts and prayers are with you today, girl - you are never alone.

    Aly: I hope that you are resting and feeling better.

    Sue: Congrats on being on the downside! I hope you had fun in Sedona. And you go on and enjoy the great tasting food. we all know that Chemo Mouth pops up all to soon!

    Tomato, Kimbly, Terri: Good to hear from you guys. It is so good to hear how everyone is getting on with their lives and moving forward...its a great word, isn't it?

  • AlyMarie
    AlyMarie Member Posts: 192
    edited June 2008

    Not better yet.  Still so weak and I don't understand why.  I have a call in to the doctor.  I'll keep you posted.  Thank you everybody for your well wishes.

  • shelbaroni
    shelbaroni Member Posts: 350
    edited June 2008

    Had my first treatment today. Was giddy and joking the whole time...yeah, Nan, I think it's the steroids. They "pump me up" as Hans and Franz used to say on SNL. Am I going to crash and go into major depression once I stop taking them? Anyway, my husband and oldest daughter (19) were there during the treatment. I started writing aloud "Breast Cancer: the Musical", like "Menopause". It could begin with a routine mammogram ("You Ought to Be in Pictures"). So of course, the mastectomy song is "Take My Breasts Away" (parody of "Take My Breath Away"). Then you have the chemo songs: "I Get a Kick out of Yew" (parody of the old Cole Porter hit) for taxotere, which is made from the needles of the yew tree. That's followed by "Platinum is a Girl's Best Friend", sung by a hyperfeminine blondy ingenue, which is for Carboplatin, which is platinum-based. Don't have a song for Herceptin yet. And you can always parodize "I've Got You Under my Skin" for the nasty Neulasta shot (of course you could reprise that if you wanted to use "I've Got Yew Under My Skin" for Taxotere.) My favorite things about today was finding out that I can still get spa treatments, go to the gym when I feel like it and go in the ocean. Back to the musical: the final song is after the lady's all done getting rebuilt. She tenderly sings "Thanks for the Mammaries" (a la Bob Hope's signature song) at her PS follow up. Then, at curtain call time, a reprise of "You Ought to be in Pictures" to remind women to get their mammograms and do monthly self breast exams. Somewhere, about 5-7 days after the first treatment, too, when our lovely protagonist is writhing in bed with her sacrum throbbing from Neulasta, after some whining, she breaks into a tentative acapella version of "I Will Survive" (to the tune made famous by Gloria Gaynor)...and then it transitions into an upbeat version with back ups and full orchestra. (Are there any song-writers/composers out there? Do you want to collaborate? This could be a hit!) Well, I think that J.D. Salinger wrote a couple novellas that were shorter than this entry, so I'll close. But first, I have to tell Aly that I have been praying for her to feel better. One thing my chemo nurse said that I don't know if yours said is that if you feel crummy and just want to lie in bed, don't lie there and wait to feel better, because you won't. She said that you need to "push against" the bad feelings, like try to do a little more than you feel like doing, and usually you can, and that at least makes your mind feel better. And then you'll find your body feeling a little better, too I don't know if that helps, but that's what I'm determined to do if and when it hits me. Keep the faith, girl. And all you other lovely ladies, too. So Nan, this is a small sample of Shelbaroni with steroid sauce! I think I'll go take a walk now.

  • Poppy_Spruce
    Poppy_Spruce Member Posts: 85
    edited June 2008

    How about...

    "I Touch Myself" by the Divinyls for the breast self exam act? Too racey?

    "Piece of My Boob" (ala Janis Joplin "Piece of My Heart") for us lumpectomy ladies

    Just in case Taxotere needs any more immortalizing..."Hair Strand Keep Falling Off My Head" (ala BJ Thomas "Raindrops Keep Falling on My Head")

    And "My Heart Will Go On" by Celine Dion as testimony to the fact that if we do suffer any heart damage from Herceptin, it will only be temporary!

    How's that? And I haven't had a steroid since October! Laughing

    Glad to hear that you are doing well, Shel!

    Keep us posted, Aly - we are praying for you!

  • TF80209
    TF80209 Member Posts: 83
    edited June 2008

    Aly: I hope you have heard back from your doctor and you have got something to try to make you feel better. I remember being weak around days 5 - 7 because I lost my appetite around day 4. Have you been eating? Lots of protein is the recommendation.

    Shel and Nan: You two definitely should collaborate on your musical. You two have a hit on your hands and a wide audience that would understand it.

    Shel: I was given Decadron in my drip with the Aloxi. I was glad I didn't have to take pills separately. I would be hyped up for about two days then would crash. Take something tonight to help you sleep if you need to. After my first treatment I was too wired to sleep and for follow on treatments started taking an Ativan the first night to help me sleep.

    My doctor spared me the Neulasta shot. I'm so thankful since taxotere gave me enough aches and pains.

    Question: Has anyone post-chemo had low CBC counts after a series of normal counts? I had a couple of low values six weeks ago but this time WBC, RBC, PLT etc were all slightly low. I asked the nurse what could be causing that and what I could do about it. She was new and gave me the song and dance about chemo affecting bone marrow, but I've been done with chemo for five months. She said there is a shot I could get and I said No to Neulasta. Her only other advice was to rest and eat frequent small healthy meals.

    Terri.

  • shelbaroni
    shelbaroni Member Posts: 350
    edited June 2008

    Yeah Nan--I think we have a hit. I think Eve Ensler would be proud of us. (After my first colonoscopy, I conceived "Midlife Physical: the Musical", but never developed it!) My onco even got in on the act--suggested "All of Me" as a post-mastectomy song. And you came up with some spectacular ones. I especially liked "Piece of my Boob". So maybe it isn't the steroids, just a certain frame of mind. I just ate a huge dinner and it's being friendly to my tummy so far. I think my husband is waiting with bated breath for me to crash and burn. But I'm just all about being as normal as possible for as long as possible. I'll let you all know if I make it to yoga and painting class tomorrow. (But I won't keep you hanging on Friday like your average soap opera writer:) I went to my daughter's school play tonight and had to field weird questions about my most heinous hairdo. I thought of "I'm training for a triathlon and it helps my swimming speed." and "I'm cast in an experimental theater piece about a lesbian body builder"; but I chickened out and just told them that I "was ready for a change". Boy, am I a weenie-butt or what!?

  • Poppy_Spruce
    Poppy_Spruce Member Posts: 85
    edited June 2008

    Hey, Shel,

    Good to see that you are still kicking. I like the lesbian body builder comment - I think you should use it!

    Aly: Still thinking about you and praying for you. Maybe when Cinrae checks in again she can share her wisdom. I know she told us she had some pretty weak and sick days, and maybe it will help you feel not so alone. Sending you lots of love and hoping they get this straightened out.

  • Poppy_Spruce
    Poppy_Spruce Member Posts: 85
    edited June 2008

    Hey, Shel,

    Good to see that you are still kicking. I like the lesbian body builder comment - I think you should use it!

    Aly: Still thinking about you and praying for you. Maybe when Cinrae checks in again she can share her wisdom. I know she told us she had some pretty weak and sick days, and maybe it will help you feel not so alone. Sending you lots of love and hoping they get this straightened out.

  • Poppy_Spruce
    Poppy_Spruce Member Posts: 85
    edited June 2008

    Hey, Shel,

    Good to see that you are still kicking. I like the lesbian body builder comment - I think you should use it!

    Aly: Still thinking about you and praying for you. Maybe when Cinrae checks in again she can share her wisdom. I know she told us she had some pretty weak and sick days, and maybe it will help you feel not so alone. Sending you lots of love and hoping they get this straightened out.

  • lg123
    lg123 Member Posts: 24
    edited June 2008

    Aly:I hope you are starting to feel better. Days 4-8 were the worst ones for me.  I had to take a week off of work each treatment.

    They can give you pills for the nausea, diarrhea, constipation, etc.... but when you mention the fatigue...they shake their heads and say, "Yes, that's the chemo."

     I know it's bad but it's only temporary and chemo is an investment in your future. I had every side effect in the book and I was miserable for that first week after treatment but I made it and I am glad I did it. The second week is better and the third week is soooo good. Hang in.

    Shelbaroni: So funny. Loved the Musical ideas. Keep them coming.

    Terri: Had my blood drawn yesterday.  My WBC and PLT are ok but my RBC and HGT are a little low.  I think they were that way before cancer so I can't blame it on the chemo...I finished TC last Oct. and the final H is in 3 weeks. Yes! I am looking forward to having fewer medical appointments.

    Leslie: Is ASCO finished? Looking forward to hearing about it.

    Leslie2

  • shelbaroni
    shelbaroni Member Posts: 350
    edited June 2008

    OK Nan...here's some more songs for the show. So our lady's in the shower week 3 of chemo. To the tune of "I'm Gonna Wash that Man Right Outa My Hair" from South Pacific, she gets a little wiggle going and sings, "I'm Gonna Wash that Hair Right Offa My Head". Then there's the old standard "Taxo-tears on my Pillow" with a do-wop background. And then, my song for right now, a parodied rendition of the old B.J Thomas hit "Hooked on a Feelin'", sung by a woman jogging on a treadmill wigging on STEROIDS. I wonder if this show needs its own thread??? I'm thinking of characters now, maybe four women, representing differnent ethnic groups, ages, personalities. They meet where--in the onco's office? And they end up soul-sisters for life. How cheesy is that? And how real...



    Aly, I am really pulling for you, girl. Sending lots of healing your way!



  • cinrae123
    cinrae123 Member Posts: 211
    edited June 2008

    omg,,,,,,,,,,,I am cracking up over here with Shel's and Nan's songs.  You two should have your own show.  Very funny stuff.

    Aly,,,,,,,,,yeah for me chemo sucked.  And with each treatment it got worse.  Dont be discouraged because everyone is so different.  Take advantage of all the meds you can get to help you thru it all.  The first 2 1/2 weeks after chemo,,,,was my worst,,,,then about mid-week in the third week I was feeling better,,,,,,,just in time to do it all over again.  And rest,,,,,,,,let people help you,,,,,,,,,,and just take very good care of yourself.  If you feel like sleeping all day,,,,,,,,,,,dooooooo it.  I hated everything about chemo,,,,,,as a matter of fact there were times I felt like stopping,,,but now 10 months out of chemo,,,,,,,I am proud of myself for hanging in there.  There is light at the end of the tunnel, trust me. 

    Where in the world are our old regulars?  Its a good sign actually,,,,,,,it means that life goes on after BC.  Yeahhhhhhhhhhhhhh

    Have a great weekend all,,,,,,,,,,

    Cindy

  • AlyMarie
    AlyMarie Member Posts: 192
    edited June 2008

    Hi Everybody.  Well it's been a hell of a day.  At 3AM I woke up in the most intense pain I have ever experienced.  My back was screaming and my abdomen was one continuous cramp.  It was bad enough that I seriously considered calling 9-1-1.  I took 800mg of Ibuprofen and laid on the bed hoping my kidneys hadn't blown or something serious like that.  After about 40 minutes it started to ease a little bit and I dozed off.  Woke up at 7AM again in agony and told my husband I had to go to the hospital.  I called my doctor on the way in and said "I'm coming in, do you want me in your office or in Emergency?  Your choice".  They wanted me in the office.  I saw the doctor and she could see the pain I was in. I couldn't sit still in the chair. I burst into tears telling her about how bad it was.  She said it's the Neulasta.  She said most folks just get achy joints but every once in a while someone reacts like me and is in intolerable pain because of it but it's rare.  Oh joy.  I get to be rare.  I DON'T WANT TO BE THE FREAKING RARE CASE!!!  So they took me back to the infusion room and installed me on a bed and hooked me up to fluids.  They pumped me full of good stuff - Neurontin, which I already take but had gone off of because my psychiatrist said it would make the nausea worse.  My oncologist looked at me like "whaaaaat?" when I said that.  She said she's never heard of that and that I'd probably have reacted less severely to the Neulasta if I had still been on the Neurontin.  Gah.  So I got that, I got some good meds for the horrible heartburn and related pain, I got Valium which apparrently helps with the muscle spasms that cause the pain and I got a bunch more Ibuprofen.  I was there for I think 5 hours.  I can't tell you how much better I feel right now.  I still have the dull ache in my back but believe me, next to what I was feeling this morning, that is totally tolerable.  We were even able to stop at the store on the way home which I feel is nothing short of a miracle for me right now.  Soooooo, I now have the tools and instructions for keeping the pain at bay and I will NOT be getting Neulasta again.  My doc says there is an alternative that is given in much smaller doses over a few days that will hopefully not cause me to go through this again.  Aside from feeling really dopey from the Valium, I'm doing OK.  I was even able to go out to lunch with my husband.  I worried a couple of people today with how deathly pale I look but I guess it goes along with the territory.  If I can keep the pain at bay I'm thinking by tomorrow I may very well be close to well again.  Here's hoping God has his hands on me.  It was wonderful to come home and see everybody posting their thoughts and well wishes for me.  You really are a wonderful group and I'm so glad that I found you.  God Bless you all.

    Aly.

  • cinrae123
    cinrae123 Member Posts: 211
    edited June 2008

    Aly,,,,,,,,,,,I am soooooooooo glad u are feeling better.  Those neulasta shots can be nasty.  But I'm glad you went in to the Drs. office and got it all squared away.  Good girl,,,,,,,  And just keep taking whatever meds you have to to keep everything in check, ok?  Chemo messed up my digestive tract,,,I had the worst indigestion.  So now I just continue to take Protonix,,,,,,which works like a charm.  Hang in there girl.

    Cindy

  • shelbaroni
    shelbaroni Member Posts: 350
    edited June 2008

    Aly: I too am very relieved that you were able to finally get some answers! And here's to a much more pleasant and relaxing weekend. Just took my last dose of steroid for awhile, and I must admit, I am no longer Empress of the Galaxy. I feel like I've been demoted to Duchess of the Solar System. Just the merest hints of nausea have started creeping in, which I beat back by eating some watermelon sorbet; and my tongue sorta burns. Weird, huh? Anyway, I'm going to try and get some work done tonight before I get called to prayer at the Altar of the White Porcelain God. I really don't want to take those nausea pills. I'd much rather puke than be constipated! ...and yes, my dear Nan, there's a song for that too. Remember "Spinning Wheel" by Billy Preston, circa 1973? My version would start: "What goes down must come up. My poor tummy's about to erupt." And I was thinking: our characters shouldn't meet in the onco office. The four of them should meet on a blog like this, tell their individual stories in song, and actually meet to finish the tale. That way they could be from all over the place. Oooh, here's another one. The nauseous lady could sing "Raspberry Sorbet" to the tune of "Raspberry Beret" by Prince. I'm sure glad you guys can't throw rotten tomatoes at me!