Taxotere/Cytoxan starting February 2012.

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  • Neli143727
    Neli143727 Member Posts: 86
    edited March 2012

    HI to all the new people!

    THANK YOU everyone for your encouragement and concern!

    Shera, you made me laugh so hard!!! Thank you!(Chemo farts and almost killing your boyfriend...)

    NikkEliz I LOVE you photos! Laughter and imagination when facing BC...you are truly amazing!

    ColdonMom the aloe juice came. Just in time! It tastes very good. Thanks again!

    Menopause effect from chemo for me: drenching night sweats. I have to change sheets, PJ, but then again I am rather an odd ball when it comes to SE.

    So I just got back home from the hospital. I got daily massage in hospital. I will miss that. Fever is gone; able to drink and eat unseasoned, soft food. On antibiotic for 7 more days.  Have some immunity instead of none. Very tired!!!

    The weight based dose was toxic for me. So MO said that we can do two things: reduce dose (but all the clinical studies are done on a weight based dose; no guarantees or studies that bellow that it works) or stop treatment. He said to just rest and try to get better and not to worry about decision making right now.

    Any thoughts ladies?

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  • Ulightup
    Ulightup Member Posts: 57
    edited March 2012

    Nikki love the pics. My favorite is the 1st one- beautiful.

    Neli- how are you doing? I'm keeping you in my prayers.

    Shera - my head is so itchy too. I'm starting to notice increased hair loss, but still not enough to shave.

    Katnich- I had rashes around my neck and ended up on steroids which cleared it up. Now I have a big bruise/ darkened spot where iv was and it is itchy. Supposed to take benedryl and apply vit. E per nurse.

    Fighter- keep up the energy and fight. We also feel better after we exercise.



    2nd chemo Wednesday ....looking forward to it since it will bring me one step closer to completion.

    6 rounds total.



    Stay positive everyone . You are not alone.

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  • shera
    shera Member Posts: 184
    edited March 2012

    Are any of you blogging or using some form of creative therapy as you work through this trip through cancer? 

    I'd love to see your work.

    I have a blog that includes some artwork, but mostly just the journey, decisions, dilemmas, fears, hopes... yadda yadda.... so on and so forth.

    http://fleetingglances.blogspot.com/ 

    Also have an art blog -- some of the cancer inspired images have made it over there... but I'm trying to keep the art blog, strictly about the art.  http://unravelingofmymind.blogspot.com/

    Shera

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  • shera
    shera Member Posts: 184
    edited March 2012

    OK so... Claritin does not seem to be working for my bone and joint pain. I've been increasingly uncomfortable all day...  moving around helps, but its after 1am in NY and I need to be able to stop moving and sleep. So I took a percocet. 

    Searched  Neulasta pain relief on the boards and found that Claritin doesn't work for everyone -- and does seem to work for others. Certainly worth the try. I also read that the second shot of Neulasta is not as bad as the first -- so if people try Claritin on the second dose, I wonder if they are attributing having less pain to Claritin when it could be that the second dose would've been less painful anyway. 

    Also read someone had no bone and joint paint from Neulasta shot when on a different drug, but when they switched her to Taxol, she had the joint/bone pain. Her doc told her she was getting her pain from the taxane. 

    In any case... now I'm going to enjoy some percocet pain relief and maybe even some sleep! Good night all.  

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  • ColdenMom
    ColdenMom Member Posts: 114
    edited March 2012

    It's 4:36am and still no sleep for me.... This is very frustrating being that I was a person who could sleep through anything! So instead of being frustrated in bed (listening to my husband breath and our two black labs snore lol) I figured I would check in to see how everyone was doing.



    Neli, I am happy to hear that you are home and on the mend. I'm not sure what I would do given your dilemma. So, the dose you were receiving was a "typical" dose for your body weight but toxic for you, correct? I wonder what studies are out there about receiving treatment under the recommended dosage?? I would be curious to find out myself before I made a final decision. Your MO is right about healing up first and getting you well before moving on. P.S. glad you like the aloe!



    Shera, I checked out your Blog - very cool work. I do not have one myself but have considered doing one, now I just write in a paper journal. I did notice that you live in Syracuse.... Im in New York too, about 2.5 hours from you. About the Neulasta - when I had Hodgkins Disease I recall the bone pain being unbearable following the shot, I did not know about Claritan then. This time I did take it for a week following my first shot and had minimal pain. I wish it would have worked for you the same. I hope you have a restful night!



    Last thing for those of you who do not have a port, did you develop atopical rash where the injection was? I did, I noticed it more pronounced today and it is very itchy. Just curious...



    Good Night All!

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  • momof3boys
    momof3boys Member Posts: 896
    edited March 2012

    Imlola59

    I don't think so... I'm pretty sure it's a set formula based upon your weight. I've only heard of it being lowered, not raised because of SE. My MO always remarks how well I'm doing, and she's never mentioned giving me more chemo!

    Ask your MO to be sure.

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  • Ulightup
    Ulightup Member Posts: 57
    edited March 2012

    Coldenmom - yes I developed a darkened itchy area where my injection site was ( my forearm) .

    It is so Itchy! I'm taking benadryl and applying vit E oil per nurse. It's helping a little.

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  • AEM47
    AEM47 Member Posts: 297
    edited March 2012

    OMG..day 17 and I'm shedding more than the dog !!!

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited March 2012

    Imlola59

    Good question and one of my friends asked me if they up the dosage if you handled the previous TX one well.  I was wondering about that too,

    Momof3boys

    I think you answered the question!!

    AEM47

    Me too!  Day 15 for me and this morning was the first that I noticed about 10 strands on the pillow.  Picking hair off of me all day too!   Being very careful around food LOL!

    Coldenmom

    When I had the port inserted it was itchy for a couple of days, I just kind of scratched around it.  Its been in for at least 6 weeks and other than a bit of darkening about 7 days after my first TX it's been fine, mabey a wee bit red and dryish where the stitches were.

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  • AEM47
    AEM47 Member Posts: 297
    edited March 2012

    Is your scalp painfull?  mine feels sunburnt...I'm trying to convince myself to go buzz it, but don't have the balls yet..lol

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  • shera
    shera Member Posts: 184
    edited March 2012

     

    My skeleton hurts. Anyone know how long the bone pain typically lasts from the shot? This is day 4 from TC#1 and second day of bone pain.                                                        

    Claritin has failed me.  I used Claritin 24 (not Claritin D, did I do it wrong?)  I've moved to percocet --- but wondering if anyone found success with anything else OTC, besides Claritin.                                                                                                                                  

    Coldenmom -- thanks for checking out my blog. Started using it when it became too overwhelming to try and tell everyone individually what was going on --- just sent everyone the blog address. Now it has become therapy.                                                     

    I actually live in Ithaca, NY --- but my dog has been staying with my parents in Syracuse since I had my UMX surgery there in January.  How do you like this years "New York winter"?  I love it... other than the cancer crap... its been a great winter :/

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  • firstcall
    firstcall Member Posts: 499
    edited March 2012

    Shera- We are each different, so the timing wont be the same for everyone.  Mine came 5 days later, started about 1 am and went until about 7 pm.  It was very intense, but when it went away it went away rather quickly. 

    BTW - I was in Syracuse just before my last treatment to meet my newest granddaughter.  My son in law is attending school there.  I was glad you are having a milder winter. 

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  • Gayle56
    Gayle56 Member Posts: 277
    edited March 2012

    Neli - Glad to hear you are home.  You have a tough decision to make.  Is there a different "cocktail" they can use for you that would be less toxic for you?

    Gayle

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited March 2012

    EM47

    No scalp pain or itchiness at all.  My hair could use a wash but I'm scared to LOL!  I'll have to breakdown and do it tomorrow though.  I went out today and it was really windy up here!  I had visions of the hair being blown off my head so I wore a hat.  I'm going to wait and see how it goes over the next few days to buzz it off completley,  Likely when my wig gets here.

    shera

    I checked out your blog, really great stuff.  As for the bone pain I like firstcall didn't take Clariton alhough will be giving it a shot next TX.  I had a 24 hour period of  wicked lower back spasms which were only calmed by Percocet on or about day 5.

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  • ColdenMom
    ColdenMom Member Posts: 114
    edited March 2012

    Shera - My husbands sister and her family have lived in Ithaca for the last 10 years or so... They just moved back this way recently. It's beautiful there! I'm not minding the mild winter at all! About the Claritin... I was told to take the "D" not 24...



    Myleftboob and ulightup - I'm kind of glad to hear you both experienced the same. It's pretty itchy today... I'll try the vitamin E. Thank you!

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  • AEM47
    AEM47 Member Posts: 297
    edited March 2012

    shera - Hang in there.. mine started with fever and bone pain 2 days after the shot and lasted pretty severe untill about day 7.  I had one good day in the middle and thought it was over, but..it wasn't.  I didn't find out about the claritan till about day 5 and then I was taking claritan 24 and dosing with benadryl at night.  Probably not too smart,  but it was that or vicodin.  It stopped as quick as it started.  This thurs. is my 2nd treatment and the doc said to start with claritan the day of the shot.  I'm hoping it will help.

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  • NikkEliz
    NikkEliz Member Posts: 38
    edited March 2012

    Shera: My bone pain for my first and my second treatments started on/around day 3-4 and lasted about 3-4 days before it went away. It peaked around day 6 and then started to get less and less. I didn't know about the Claritin, so hopefully i'll work for me *fingers crossed* next time. But I was taking tylenol 3 by the second treatment. The first one I got away with using just Tylenol Arthritis which is over the counter. I'm really hoping that the pain at least doesn't get any worse for my third treatment as I really don't want to take anything stronger than the tylenol 3 with codine....

    I had a great time out with the girls for the 90's dance party last night, and tonight went to watch movies with this guy I'm sorta seeing and his friends at his house which was fun. Unfortunately, it's almost 2:30am and I'm not really sleepy at all... hopefully I'll be able tog et to bed semi soonish. Pretty much all my side effects have stopped from my last treatment, except that some things still taste weird. Hopefully it'll stay that way until round 3!

    Hope everyone is having a good weekend!

    -Nikki 

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  • Neli143727
    Neli143727 Member Posts: 86
    edited March 2012

    ColdenMom and Gayle56 Thank you for your input! Yes, GoldonMom the dose was weight based but toxic for me. And there are no studies addressing bellow the weight based dose.

    Shera, I loved your blog! My nephew went to Cornell and we visited him. What a lovely town is your hometown...

    NikkEliz I am up tooUndecided

    I was in the hospital when I got Neulasta so I had Toradol (like Ibuprofen) for the bone pain given IV because I could not swallow. It worked great.

    Good night and Happy Sunday to all!

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  • A_FIGHTER
    A_FIGHTER Member Posts: 109
    edited March 2012

    Hello My Friends,

    NikkEliz: I'm hoping (fingers crossed) I do as well as I did the first time with SE's. I had very minor SE's. We will see. Glad you had a great time with the girls!

    Shera: Hiliarios, chemo farts!! No blogging here. I read your blog though. Great job documenting your experience!! How was the percocet? Did you sleep?

    Kim48: Thank you for your input about your second treatment. I hope you are having a nice time at your sister in-law's!

    lmlola59: I was told by MO the dosage is based on weight. Day 5 & 6 were my "Off Days" - minor fever and mild achyness.

    Neli: So HAPPY you are home! Wow, daily massage, NICE! My thoughts: First I would ask MO about another cocktail and question other possibilities of medications rather than NOT doing anything. I also believe we are in this for the fight of our lives and if worse case scenario (ask your MO) is getting chemo in hospital and being monitored so be it. I know a few people who have Cancer (not Breast) and had Chemo in hospital because of how sick they got. I know one would be in the hospital for five days each time she had Chemo. They are doing absolutely fine now! Laughing

    Ulightup: How's the hair today?

    ColdenMom: No rash here. I'm hoping on Monday no issues with needle this time. If so, then needle will be in different spot from last time.

    AEM47: That's how I was with my hair...LOL! I found that once I cut/shaved my hair I had no more scalp pain/itchiness.

    Myleftboob: How's your hair? 

    On Friday, a couple hours after Boot Camp, I tried to run. Well, that didn't exactly work. My knees were extremly sore. After I thought about it, I noticed it Thursday when I was working with Girls on the Run too, but no where near like Friday. As the day progressed they were better. I decided yesterday not to run. I took the day off completely from exercising. Today I was able to run 4 miles!!! So happy!!! I had someone tell me it could be Uric Acid build up. I'm not really sure as I would think it would stick around and not go away so quickly. I will as MO tomorrow to check my levels.

    I started my Steroids this morning. Not too happy about this! As I've mentioned before I'm back to myself and I REALLY don't want to face the "Break Out" again since it has cleared. I have noticed I'm getting a minor headache this time, but it could be I need to drink more water. Speaking of water, don't you just LOVE weighing in the day of infusion after you have drank so much!!! It's not our "REAL" weight! So does this influence infusion dosage? Hmm, something else I will ask tomorrow.

    I started reading a book - "Waking the Warrior Godess". Anyone read this? The author is a woman we ALL need to thank. She is responsible for getting the law passed in which insurance companies are responsible for paying for reconstruction surgery!  She offers A LOT of information. She offers some techniques when done in conjunction with Western medical treatments that improve our chances of survival. One technique she mentions is using the spice Turmeric and drinking Green Tea daily and if possible with same meal. Turmeric makes Green Tea eight times more effective, and green tea, in turn, makes turmeric three times more effective.  This greatly enhances the Breast Cancer blocking qualities of Soy.

    I hope everyone is is enjoying their weekend to the BEST of their abilities,

    Hugs,

    Bonnie

    Life's problems wouldn't be called "hurdles" if there wasn't a way to get over them - Author Unknown 

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  • AEM47
    AEM47 Member Posts: 297
    edited March 2012

    Okay..what the heck is a matter with me??? My hair is coming out profusely and I can't bring myself to buzz it.  My scalp kills and I'm scared sh**tless to see myself bald.  I knew this was coming and I know it's here now.  I've tried to picture the bald thing and I just don't want to see it.  I can't believe with all that's gone on, this seems to be the one thing I can't get a grip on and face.  I don't want to watch this, but I can't seem to be proactive on this.

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  • A_FIGHTER
    A_FIGHTER Member Posts: 109
    edited March 2012
    AEM47: You will when you are ready! I didn't want to see the bald spots and deal with the soreness of the scalp/itchiness any longer! 
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  • NikkEliz
    NikkEliz Member Posts: 38
    edited March 2012

    AEM47: I didn't realize it until I shaved all my hair off, but until now I have viewed/treated my hair like a body part, as well as a part of my identity. It's a HUGE part of how I saw myself and how I look. I would be more likely to worry about my how my hair looked before I went out than how my face or clothes or anything looked. Once I shaved it off, that all changed. I have come to realize that my hair is more like an accessory I can play with and use to change the way I look. It's not easy to loose it, however, it has made me realize that I've been using my hair like a security blanket to hid behind for quite a while and as had as it was to step up and just shave it all off, I am so glad I did. It has been a gift to me to have that part of myself stripped away so that I could truely see how beautiful I am on both in the inside and outside regardless of something like the hair on my head. *hugs* You can do it. We're all here with you. 

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  • shera
    shera Member Posts: 184
    edited March 2012

    Just a heads-up --- for Neulasta pain ---  from what I'm reading , it sounds like Claritin D is what works... unfortunately I had followed directions that specified NOT to use D.  I will try Claritin D next time and hope it works. Bone pain seems to be easing off now. Yesterday (day 4 for me) and this morning were bad. Hurt to stand, sit, lay down, move, ...  percocet helped. Its worth trying to avoid it if you can!

     https://www.inspire.com/suncity/journal/claritin-for-bone-pain-from-neulasta/ 

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  • lmlola59
    lmlola59 Member Posts: 146
    edited March 2012

    Hi all,

    Nell I am so glad you are home but so sorry you have been through what you have.I agree with bonnie that this is not your only choice of cocktail and there has to be another way.If they can't accommodate you maybe there are other facilities that can.First get strong then insist that they work with you or refer you to someone who can.

    Bonnie first want to wish you good luck tomorrow on your second TC.

    I can't believe your were actually thinking of going for a run after boot camp? Are you nuts?

    I think so far I am following you with the SE'sI was fine and exercised every day so far till today day 6.I was a bit achy yesterday and today mostly in my hips and legs so I am thinking maybe even without the Nelasta  shot my body is trying to pull the WBC from the bone.Don't really know if this is true but its a theory. 

    Momof3boys  Thanks for the feed back on upping the dosage I am definitely going to inquire when I have my appointment Thursday.

    NikkEliz love your attitude on the hair front wish I could be like you I think it is the confidence of your youth.I no longer have that and seem to have nightmares about this every night.Not much I can do about it when it happens except deal.

    Well finely got the nerve to tell my 85 yr old mother and my sister who was on vacation.It has been driving me crazy and a relief to get this done.My mother was a lot better with it than I thought and agreed to not tell anyone else unless I agree.Now hopefully she will remember this.Well 2 down maybe tell the mother and father in law next weekend we will see.

    Have a great evening all 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    aem47 - i am with you on the hair front.....it is making me so sad.  I am not a vain person usually but this is slowly killing me.  Its not even nice hair but the thought of it being gone completely is just too much on top of everthing else.  I got the wig, which is nice but i HATE it.  I can't bear the thought of going out in it.  It is now day 17 after first TX and I know it will all be gone by Thursday when I have my next chemo.  All I want to do is curl into the smallest corner possible without any people or mirrors and cry and cry.  

    How pathetic is this.....I have been a trooper in everything else that has happened so far but this is just too much, I truly do not know how I will get thru this part of it.  

    Sorry - I know I sound like such a baby but it is just the suckiest thing so far!!

    (((Hugs))) 

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  • Ulightup
    Ulightup Member Posts: 57
    edited March 2012

    Coldenmom - how is your itchy rash? Surprisingly the vitamin E oil helped.



    Neli- so happy you are home. You can do this ...we are all praying for you.



    Afighter and Aem47 - my hair is shedding like crazy. I went to pilates today and was so embarrassed coz I had to keep cleaning the hairs off the floor. I wanted my hair buzzed today, but husband can't get the nerve to do it. So I'm going to have it done tomorrow by my girlfriend. I tried my 3 wigs on and the only one I like is the one with hair attached to the hat coz it looks natural. No poof on top.

    I'm thinking of getting a halo for my scarfs and hats. I tried wearing the scarfs without hair and it just makes me look like I am going through chemo. I didnt think I would have a hard time going out in just a scarf, but I might be self conscious. I wish I had your strength nikkeliz , afighter and all of you who have done it and are proud. Has anyone purchased a halo?

    Mthrdee and Aem47 ....you are not alone.

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  • AEM47
    AEM47 Member Posts: 297
    edited March 2012

    Well I finally realized that I have a pharmacy here of attitude adjustment pills...so when better to utilize them.  Took 2 lorazapam, a glass of whine and chased it down with 4 Yodels....yes 4.  Then out came the buzzer.  I've got it down to about 2 inches and I'll leave it for now.  It just kinda looks from the front like I have it pulled back in a ponytail. I have thought about maybe some superglue would help....but I know it's not recommended.  It also gave me an idea that maybe by september I would have this much and be able to go without a hairy hat (wig)

    mthrdee - you sound like you're on the same schedule as me.  

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  • ColdenMom
    ColdenMom Member Posts: 114
    edited March 2012

    Ulightup - I tried the Vitamin E - it's still very red and bumpy but not itching too badly. Thanks for asking.



    Aem47 - you made me chuckle... It is tough to buzz it down the first time. I'm sure you look great! I am only 12 days out and don't even want to deal with the strands of hair on me, my pillow, chair, etc... I am very tempted to buzz it down this week before it gets bad. I just did the scarfs and hats last time and probably will do the same this time. I never tried the halo - let me know if you get one and how you like it.



    Bonnie - good luck tomorrow!



    Neli - hope you're doing well tonight.



    Tomorrow's the day... I'm headed back to work. My plan is to work around my treatments and really listen to my body. My employer is very supportive and is allowing me to work from home and my office until I get through this. I've been off since January 16th, I had a bilateral mastectomy with TE's so I'll need some time in a few months for the exchange surgery as well.



    Have a good evening all!

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  • NikkEliz
    NikkEliz Member Posts: 38
    edited March 2012

    Here are a couple videos of some neat ways to tie scarves I found.

    http://www.youtube.com/watch?v=Zkc-xywFS94&feature=player_embedded 

    (for the above link, there are 2 ways, I like to combine the two and wrap the braid around the'bun' type part.)

     http://www.youtube.com/watch?v=kCHVW-PuXDQ 

    If I find more I'll be sure to pass them along! 

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  • shera
    shera Member Posts: 184
    edited March 2012

    mthrdee - you're not pathetic, you're being honest. I'm on day 4 and each day.. I dread "that" day more and more. I try to keep the perspective that the bald head is a sign of guts..courage and strength. I'm trying not to think of it as publicly humiliating. The hardest part will be at work. It helps to see how time flies...before we know it, this will be a badge of honor from our past. Until then, we can lean on each other. we are not alone. ((((((hugs))))))

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