August 2011 chemo, anyone w/ me?!

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  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    I'm getting 4 Taxol dose dense every two weeks starting Tuesday. I don't understand why some get 12 weekly doses and others get 4 doses every two or three weeks.

    I'm still suffering from mouth sores...very painful. It's annoying because the metallic taste finally went away and my appetite came back but it hurts to eat so I haven't been able to eat much all weekend. I'm going to talk to the ONC about it when I see her tomorrow. Maybe she can give me something to get rid of the sores. I've been rinsing with baking sode/water and also Biotene but the sores don't seem to be going away.

  • DebinUtah
    DebinUtah Member Posts: 75
    edited October 2011

    Michelleo--ask your onc for an RX for "magic mouthwash."  It's a little nasty tasting, but it totally numbs your mouth--feels like you've been to the dentist.

    It is really odd that there are so many different schedules.  I have SIX rounds of taxotere plus carboplatin and herceptin.  Any other triple positives doing six rounds of Taxotere? 

    Grimbol--you're right; just when I start getting stronger physically, I get totally weepy, especially in the evening.

    I've been using the Systane, and my eyes feel better, but they're twitching so much that it's driving me crazy. Makes it hard to read--one of my few pleasures these days.

    Hope everyone has a good week.  Even if we don't, we're still one week closer to being done with all this. Peace and strength.

  • Robyn6463
    Robyn6463 Member Posts: 167
    edited October 2011

    Wow - I'm 10 days out from Treatment number 3 - T/C - and yesterday was horrible. I had the worst case of heartburn/indigsestion I have ever had. I take Prilosec in the morning, Pepcid at night, and Tums during the day, but I just couldn't get this under control. I even tried drinking baking soda and water, which I know is really bad for you, but it usually helps. Not this time. I finally took some compazine, and I managed to get some sleep last night. It's better this morning, but not gone.

    AND the ithcy rash has arrived. On the back of my legs, top of my thighs, the inside of my wrists...Doesn't help sleeping at all! I really thought something had bitten me, but then it started coming and going in various places...and I read Ellen's post. (About 3 days ahead of me on the same treatment schedule).

    ONE TREATMENT LEFT! I really have to be able to cope with this! I'm so close to running out of sick time, I planned on working this week. I think it's time to call the doctor!

    Chrys - what's going on with you???? Please let us know!  

  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Ah Robyn- You're getting the rash, too? My isn't very itchy. though. Well, it is at first, then it fades. The weirdo ulcer things itch like crazy, though. NP said that they don't look like anything scary. Rash is limited to my right hand (between thumb and index finger w/ hives moving up from it) and my face. And I know, I'm worried that the 4th dose will really bring it on. And what is up with the delayed reaction, I wonder. Tell me what your doc says about it, I was just thinking about picking up some Benedryl to have on hand for next dose. I had only 1 bad night of heartburn. Tums seemed to help. And Ativan, which I am clearly an addict of now..... is that possible?

    Michelle- I went into my 3rd treatment w/ a partially healed mouth sore, and thought it would really act up, but actually I had no sores at all this go round! So strange how w/ each dose different SEs act up.

  • Grimbol
    Grimbol Member Posts: 326
    edited October 2011

    Unfortunately Ativan is highly addictive!! but count me in too. Smile

    I have a rash but it's all around and under my port, (which is in my arm), I'm taking Benadryl for that. I am very frustrated at how this stuff messes with your whole body!!!  I've never had heartburn/acid reflux before, but now I do, to name but one extra thing!! Feeling a little disheartened here, BUTI ma not coping with nearly some of the issues some of you are so, I'll pick myself up and get on with it!

    Happy Monday to you all.

  • Taylor777
    Taylor777 Member Posts: 141
    edited October 2011

    Michelle- Did you try gargling with salt water?? I had some mouth sores and kept gargling with salt water every hour and the next day they were gone.

    Robyn and Ellen- Wow 1 tx left!! I'm so jealous!!!

    I've been so emotional, depressed, I feel like crap, I don't feel like doing anything..I just want this nightmare to be over!!! I'm really trying to stay positive but Dec 6th seems so far away!!!

    I hope your S/E's are going away..

  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Taylor- I have felt that way too, from time to time. I think it is "stuck in the middle of the chemo road blues" Really, it is sometimes hard to keep one's chin up when faced w/ more rounds of this crap. But, face them we will! I am trying to stay in the present, but my mind keeps running ahead. Radiation, then hormones, then hoping I can stay away from the scary what ifs.... 

  • summergirl1
    summergirl1 Member Posts: 182
    edited October 2011

    well made it past TX 3 (half way mark ) and not feeling too bad , just had the horrible spacey out of control feeling from the steroids and this part really freaks me out I actually cryed the other night because there was too much going on around me and I just couldnt handle it, but no sickness or other SE's so far TG, still have my cold but as Im an asthmatic thats nothing new once I get a head cold I have it for at least 2 weeks, 

    Taylor : sorry you are feeling down ,I feel that way some days as people might say oh u look great and you cant even tell you have a wig on,( I dont feel good about  myself ) but keep trying to tell myself that soon, very soon I will, and I will spoil myself with things to make me feel good about myself again, you will get through this and my last day is the 1st so within the same week we will be  ending this horrible nightmare (stay strong) we have too/ hugs ,

  • Taylor777
    Taylor777 Member Posts: 141
    edited October 2011
    Thanks Ellen and Summergirl...Smile
  • MizMarie
    MizMarie Member Posts: 332
    edited October 2011

    Hi Ladies,

    I seem to have survived #3 and am back to work today.  My oncologist had some sort of personal emergency, so I saw a different doc on Thursday.  I think I like the sub better - he seemed less in a hurry to get away from me, and actually sat down when we talked.  He's also pretty easy on the eyes, which never hurts...  Wink  My hemoglobin was low, and the original plan was for me to come back on Tuesday to have labs done again because we expected it would go down further and I would need a transfusion.  However, after we thought about it awhile, we decided to ask for the transfusion up front to save me from the miserable weekend that I would surely have had.  I didn't crash and burn, but the bone pain from the Neulasta shot was a lot worse than before, so I guess there's no winning when it comes to SEs.  Still, I have plenty to be thankful for - it could be so much worse...

     I watched "Living Proof" yesterday.  I'd been warned that it was very emotional and should wait until after I was through treatment.  Maybe I was just better prepared - it was a good movie, but it had somewhat of a fairy-tale ending that didn't stir me the way I expected it to.  I also read the book on which the movie was based - much more difficult emotionally than the movie.

  • Robyn6463
    Robyn6463 Member Posts: 167
    edited October 2011

    Summergirl, Taylor, Ellen - When this all began, my oncologist recommended anti-depressants, but I balked at the idea. When I talked it over with my GP his thoughts were that anti-depressants are meant for people who are depressed for no reason. We have breast cancer, and while that is not nearly as terrifying as it was a couple of decades ago, we have very good reasons to be down! When this is all over, we'll be ourselves again! If not, then we can talk about anti-depressants. I read some advice in the paper last week by a breast cancer survivor, and she instructs us to allow ourselves to have bad days. It's okay! This sucks and we're supposed to have bad days! When all this is behind us, the bad days will be too! And we're getting there! We are the AUGUST group, and it's OCTOBER now. We're making progress!!!! As long as we get a few good days in now and then, we're doing AWESOME! Hang in there you guys! 

  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    Deb, got some magic mouthwash. Hope it does the trick! It already feels a bit better afer just one use.

    Taylor, hope you feel better soon. This is definitely an emotional roller coaster.

    Mizmarie, easy on the eyes! LOL My ONC is a woman so I haven't had that experience! Interestingly, most of the ONCs at our cancer centre are female.

    My blood counts were good today so I'm going for tx #5 (Taxol #1) tomorrow. Fingers crossed I won't have any reactions to the Taxol.

  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Robyn- Here here! Well said.

    Mizmarie- My GP is like that. Just pretty much has her hand on the door knob, ready to run back out of the room. I would NOT be ok w/ my onco doing that. So, I can understand your preferring the sub!

    Michelle- Taxol sounds like a gentler ride than the AC, hope you find that to be the case! What is magic mouthwash and how can I get some? Is it available in drugstores?

  • DebinUtah
    DebinUtah Member Posts: 75
    edited October 2011

    Ellen--my understanding is that you need an RX for Magic Mouthwash (it's really called that).  It's basically liquid lidocaine--seriously.  It doesn't necessarily heal your mouth, but it totally numbs it--and I mean TOTALLY--so that you feel better.  My insurance, which has covered everything so far, doesn't cover it for some reasons, but my mouth hurt so much after my first tx that I felt like the $22 was well spent!

    Hey, get this: my onc (who is a peach!) has an incurable immune deficiency disease and has had absolutely no hair on his body since age 9. I love not being the only hairless in the room!

    Robyn--I loved the reminder: we're AUGUST girls and it's OCTOBER now!  We are AWESOME!  

  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    Ellen, magic mouthwash is only available by prescription. It's a cocktail of a few things, including dexamethasone. It numbs your mouth so the sores don't hurt so much. As soon as I said "mouth sores" to my ONC, she immediately said she'd write a prescription for magic mouthwash.

  • Ybrooker1
    Ybrooker1 Member Posts: 41
    edited October 2011

    Hi Ladies....hope everyone is having minimal to no SEs today! God's blessings to all who are going to the chair this week.



    Michelle - it looks like I'm about 2 weeks ahead of you. I will have my 2nd round of Taxol on Thursday. 1st round I had really bad joint/bone pain from my hips on down, but that was it for SEs. Praying that your treatment will be uneventful.



    Taylor - sending {{{{hugs}}}}. I think we've all been, and sometimes revisit, where you are! There's nothing wrong with that. Better to get it out than to let it eat you up from the inside. I didn't want to add any more drugs to my steadily growing arsenal so I see a Psychologist once or twice a month just to sort through this madness! Hang in there...."This too shall pass"

  • Taylor777
    Taylor777 Member Posts: 141
    edited October 2011

    Thats right Robyn we are the August group and it's October!!!! Yes we can do this!!! We are AWESOME!!!

    Good luck tomorrow Michelle!!

    Thanks YBrooker1 Smile

    Hope you all have a S/E free night!!!

  • summergirl1
    summergirl1 Member Posts: 182
    edited October 2011

    Robo47, WELL DONE, on the head shave , and I am sure u DO NOT look like a freak,, its just very hard to get used to seeing ourselves without hair, I too think (it sucks) and if it wasnt for the hair thing this would be a piece of cake,, as I have been very lucky with SE's so far., I am fine in the house and around family but do still feel weird when I see people I havent seen for a while , still feel like I am in disquise,doesnt matter how much I try to do myself up, Make up jewellery etc, I still dont feel good without hair, did u get a wig yet and how do u find it,?  stay strong and yes we are all here to help each other through this horrible time, soon we will be showing off our re growth pics, (hugs) 

    Day 5 after last TX, 3.  feeling good but did lose my taste buds this time and would kill for a decent cup of coffee that I could taste,LOL hoping to go shopping today, have to get orginised as my daughter will be moving back home to us  in 5 to 6 weeks, she is currently living in Philadelphia,  I havent seen her in 4 yrs and she is due her first baby Jan 10th, so there is so much to do, well at least it will keep me focused plus my son heads off to Disneyland Paris to compete in ( dancing championships )  thursday he is representing Ireland , so its all pretty exciting ..

    Hope everyone is doing well and good luck to all who are having TX this week. xx 

  • missey29
    missey29 Member Posts: 48
    edited October 2011

    Hello all, checking back in after participating in the Looking Good...Feeling Better event at Baylor Dallas last night. It was AWESOME. I heard about it from this discussion board. Really was nice to get the free SWAG. All name brand stuff. Also, really appreciated meeting other women going thru this. Truth that there is strength in numbers.

    My next chemo is this Thursday (TC#3 out of 4). I will be almost done and move on to the next thing.

    Hope everyone has a SE free day.

    Talk to you soon.

    Missey29 

  • allformy4
    allformy4 Member Posts: 33
    edited October 2011

    Thanks everyone, you make me feel somewhat "normal" hearing about all the wierd side-effects.  I have those black things on my nail beds too, and thought it was sharpie marker @1st -couldn't understand why it wasn't coming off! lol  The live strong website is great, that's where I found out about the nail bed side effect.  Getting my 1st Taxol tomorrow (I go q2wks x 4) and I am real nervous.  I have several antibiotic allergies, so I am worried about reacting to the Taxol.  Just wondering if the eye tearing goes away?  Also has anyone had any issues drinking carbonated drinks?  I don't drink soda much, but I took a sip the other day and it was like nails going down my throat!  I also have discomfort in my bladder??

    How wierd is it that the symptoms you experience (at least I think) are very similiar to being pregnant x1000??

    Hope everyone is having a good day... soon Halloween will be here and then w/the holidays coming, time will fly and we will be done with this!!

  • Taylor777
    Taylor777 Member Posts: 141
    edited October 2011

    Summergirl -How exciting your daughter is moving back home and having a baby in Jan.!! Good luck to your son!! You have lots to look forward too!!!

    Robo47- I know how you feel with the whole hair thing!! With everything we have to go through I hate how we have to lose our damn hair!! I feel and look like a train wreck!! I know it's temporary just a damn bump in the road!! I hate leaving the house and have no motivation to do anything!! Sorry I don't mean to be so negative I'm just so sick of all this!! And your right at least we have each otherSmile

    My taste buds too arent the same havent had coffee in so long.

    missy29- Congrats on almost being done!!

    Just wondering how all of you are staying positive?? I have 2 beautiful kids and it's my daughter's 12th bday today..

  • Taylor777
    Taylor777 Member Posts: 141
    edited October 2011

    Summergirl -How exciting your daughter is moving back home and having a baby in Jan.!! Good luck to your son!! You have lots to look forward too!!!

    Robo47- I know how you feel with the whole hair thing!! With everything we have to go through I hate how we have to lose our damn hair!! I feel and look like a train wreck!! I know it's temporary just a damn bump in the road!! I hate leaving the house and have no motivation to do anything!! Sorry I don't mean to be so negative I'm just so sick of all this!! And your right at least we have each otherSmile

    My taste buds too arent the same havent had coffee in so long.

    missy29- Congrats on almost being done!!

    Just wondering how all of you are staying positive?? I have 2 beautiful kids and it's my daughter's 12th bday today..

  • missey29
    missey29 Member Posts: 48
    edited October 2011

    Taylor777 - Congrats on your kids and your daughter turning 12. The way I see it there is really no other choice but to be positive. I try not to dwell on the negative. Trust me I have my bad/sad moments. But it could always be worse. My dad went thru leukemia treatments for 4years and passed away from it on 1/29/03. That was my only experience with the Big C. So, when I was diagnosed on 6/14/11 that was my only point of reference. My DH, faith in God and my 11 yr old daughter help me to focus on beating this.

    Also, knowing that I am not alone helps. Let's be strong together.

    Keep your head up everyone.

    Talk to you soon!

    Missey29

  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    All4my4, I just got back from my first Taxol treatment. I have a Pencillin allergy so I was a bit nervous too. It went great. The Dexamethosone and Benadryl made me sleepy so I dozed on-and-off all afternoon. I had no issues at all with the Taxol infusion. It was 5 hours but it went by pretty quickly.

    My new wig arrived today. I ordered one with a large cap and it's much more comfortable than the others. Who knew I had such a big head!! LOL

    Taylor, happy birthday to your daughter. My oldest is 11. She's been a big help to me through this whole experience. Actually, both of my girls have. I find they help keep life normal for me - they keep my mind off what's going on.

    As far as staying positive is concerned, I tend to be a positive person generally. When I have a bad day, I think of my friend Cathy who passed away a few weeks ago. She had to go through all this s%$t with no hope of a cure at the end. When I think about that, my situation really isn't all that bad!

    Got to go now...the kids will be  home shortly! Have a great SE-free evening everyone!

  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    Madismommy, we haven't heard from you in a while. Hope everything is okay with you!

  • jbagley
    jbagley Member Posts: 102
    edited October 2011

    Hello all. I just had #2 taxol yesterday. Has anyone noticed foul tasting burps after taxol? Like rotten eggs. Sorry if it is gross, but I have wicked gas....... my taste buds are starting to go south. My fingernails hurt too.



    Michelleo, have u noticed the gas or fingernail pain? My feet are def tingly.





    Allformy4, soda hurts my throat too for about a week after each treatment. I drink a lot of vitamin water. It tastes good really cold.



    Hoping everyone has se free week.

    Jennifer

  • luvmy2kids
    luvmy2kids Member Posts: 65
    edited October 2011

    jbagley- After Taxol number 4 last week I had an awful salty taste in my mouth constantly.  I tried water and it tasted like salt water fron the ocean.. If I eat anything it is like a salt stick is in my mouth...... Today I had infusion number 5 and wating to see if this SE persists.  Lost 5 pounds since last week due to this so maybe it is not such a bad thing;-))))))

    Take care!

  • Grimbol
    Grimbol Member Posts: 326
    edited October 2011

    I can drink water as long as it is really cold, don't like much else though. I do still drink a cup of coffe in the morning, habit!

    I have noticed I have more gas than usual, but not really bad tasting.  My nails are still ok, although taste buds went a while ago.

    My worst is the tingling and soreness in my fingers and feet, that is bothering me that it is this bad at only 3 tx, what will it be like after 6??

    I have registered to go to a Look Good thingy next week, the day before my next chemo, I can't believe 3 weeks can go by so fast, except the week following tx when it just draaags.

  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    I am on taxotere, not taxol, so maybe it is different. But, only the fatigue is cumulative-not the SEs. The neuropathy has varied w/ each treatment. The tips of my fingers are where it is at presently. Oh, and does anyone else have white lines in your nails? Like rings in a tree, I can count my T/C treatments. :( Well, actually I can only count 2, nails aren't growing very much now.

    I was really loving Mint Water. Do you guys have that where you are? It comes in spearmint, peppermint, etc. Tasted great cold. Anyone's eyelashes or brows going? I still have mine, but my eyes are tearing and itching sooo much and it is really annoying. Drops aren't touching it.

    Ok, so big plans to LEAVE the house today and go GROCERY shopping. WooHoo! Hopefully, my blood is back up to functioning levels!

  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    General survey:

    Who else will be going for RADs after chemo? I have 32 treatments coming up....

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