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Cytoxan Taxotere Chemo Ladies- February/March 2013

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Comments

  • TMM60
    TMM60 Member Posts: 121
    edited March 2013

    GailAnn- hope today goes smooth as silk for you

    Starynights- same for you tomorrow

    Tomorrow, I have TC#2- I will be half way done! Yea!

  • AnnieLane
    AnnieLane Member Posts: 757
    edited March 2013

    Starynights, as so many of the other gals have said, the infusion itself isn't hard. Of course I do have a port and know you were concerned about the IV. My treatment went fine and I am home, have gone with my husband to walk the dogs and plan to work 3-7 PM since I'm feeling OK. I am a telecommunter so I work from home.

     All I notice so far is that my skin feels a little "crawly." I'm drinking lots of water.

  • cmbernardi
    cmbernardi Member Posts: 853
    edited March 2013

    GailAnne,

    Super great news!

  • skyglenn
    skyglenn Member Posts: 1
    edited March 2013

    Hello everyone - I'm new and I may be joining you in chemo. Just met with oncologist and will most likely be starting around March 25. Thank you for all of the info. I'm trying to prepare myself and also trying to get my immune system strong.

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited March 2013

    GailAnn- Way to go!!!  Hopefully you will feel fine tomorrow and maybe the next day so you can do whatever you want to do or need to do.  As I recall, I always felt the slide down sometime on the 3rd day after my infusions.

    Starynights- Hope you had an easy time in the chair with your first infusion.

    TMM60- Good luck tomorrow and wishing you an easy time in the Big Girl Chair.  It's great that you will be halfway finished with the chemo after tomorrow's infusion!!!

    Wishing each of you minimal side effects and restful times.

    Skyglenn- Welcome!!

  • TMM60
    TMM60 Member Posts: 121
    edited March 2013

    I don't know if you all lurk on the Jan Chemo group, but those ladies are a hoot! I really feel uplifted by their sense of humor as a way of coping with this. Since I am a horse woman and there are so many of you Texas ladies on this board, I thought I'd share what Cancernoway posted today:

    Courage is being scared to death, but saddling up anyway. - John Wayne

    Congratulations to all you courageous ladies who stepped up to the chemo bar today or will be soon! We have our posse assembled,  saddled up and ready to hunt down and kill all of those nasty bugger cancer cells!

  • Ella1
    Ella1 Member Posts: 7
    edited March 2013

    Hi all,

    I had CT too and just finished the end of Feb so thought I would share a couple tips I wish I knew going in...



    Neulasta...claritin seemed to help me with the aches.

    Also ask the nurse giving it to you to deliver it Slowly..the slower the better. Cuts way down on the sting.

    Thirdly, ask if getting the neulasta after 24 hours of chemo is right for you. I didn't have it after the first round until a week later when my white could had dropped to levels so low I developed neutropenic fever and was hospitalized. Everyone's body is different but its worth asking the question. I had the neulasta after each of the other rounds the day after and was fine. ( I guess there is a rule that you have to wait at least 24 hours after chemo before neulasta)





    Hydration....If you are not eating or drinking or otherwise feel crummy ask if IV hydration would help you. I had to have a few days of it after each treatment as I just wasnt able to get the fluids down...don't wait a week ( like I did) ask as soon as you notice a problem.



    decadron/dexamethasone- I had this med the day before, day of, and day after chemo. I learned and experienced that for some people coming off this med has an emotional piece..anxiety, crying and panic/fear. Just knowing it happens sometimes is all I wanted to share...so if you find yourself inconsolable for a day or two after the last dose know that the decadron could be a major contributing factor.

    Thinking of you...Ella





  • AnnieLane
    AnnieLane Member Posts: 757
    edited March 2013

    Thank you everyone! Ella1 we appreciate a new voice of experience!

    I wanted to try icing my hands and feet, so they got out the frozen gel slippers and mittens for me. I managed to keep the slippers on for the duration, but took the mittens on and off. The nurse said not many patients are able to tolerate freezing the hands for very long. They only do that during the Taxotere infusion, not the Cytoxan.

    I had one of my favorite fun movies to watch on my DH's netbook and that was a wonderful distraction.

    Starynights, I wanted to tell you that I am still feeling OK, just a little "weird." My mouth is getting dry and my skin is a bit tingly all over. I managed to work my 4 hour PM shift.

    Make sure you go in very well hydrated!! I will be hoping and praying for the best experience possible for you.

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited March 2013

    GailAnn- I wore knitted hand gauntlets (fingerless) when i iced.  Those helped keep the rest of my hand warm since I was just trying to ice the nails.  I wore thin sports socks on my feet when I iced.  I didn't want the direct cold on my toes.  I was lucky that I didn't have any nail damage on my fingernails or toe nails... just indentions that on my fingernails marking each chemo and some light discoloration.  No lifting of the nails or loss of nails.

  • cmbernardi
    cmbernardi Member Posts: 853
    edited March 2013

    Skyglenn - Welcome to this brave new world.  You will find alot of help and advice from the great folks that post their thoughts, advice and experiences here.    

  • TMM60
    TMM60 Member Posts: 121
    edited March 2013

    I had my second round today. I didn't get an allergic reaction to the Taxotere the first round, but did this time. I got suddenly warm and flushed, had tunnel vision and a heavy chest. They stopped the infusion and gave me benadyl and more decadron. All was well within 15 minutes or so, so then they restarted the infusion slowly and worked up to full rate over time. No more incidents and the rest went smoothly.

    The benadryl made me very sleepy and I wanted a nap, but the decadron wired me up- legs were restless. Half of me wanted to sleep the other half wanted  to run. Weird.

    Hungry tonight, had some chicken noodle soup that I had made- that tasted good.

    cmbernardi and gail ann- hope you are having comfortable night with minimal or no SEs!

  • melody46
    melody46 Member Posts: 77
    edited March 2013

    TMM60  I also had a reaction my first round very similar to yours, breathing was hard.  But they dosed me with more steroids and benadryl and I was OK and resumed my treatment at a slower pace.  My 2nd round is next Wed. and I'm a little nervous - that was scary!  Oh man did I want to eat for about 5 days around that time.

  • TMM60
    TMM60 Member Posts: 121
    edited March 2013

    Yeah, it was scary because it came on so fast. Nurse said she'll alert the MO to add benadryl to the pre meds next time. I have been snacking like a hoover tonight, but also feel like I want to hit the bed early. I may take an Ativan before bed to help me sleep with the steroid wiredness.

    Took some Senokot-S tonight fully anticipating the constipation I had last time (I had taken colace night before chemo)

    I've also been doing mouth rinses with 1/4 tsp salt, 1/4 baking soda in 1 cup of warm water to help ward off the nasty mouth sores and thrush I got last time- can't hurt.

  • AnnieLane
    AnnieLane Member Posts: 757
    edited March 2013

    Wow, TMM60 & Melody, that allergic reaction to the Taxotere does sound scary! I just keep thinking the more I hear of other people's varieties of experiences, the better prepared I am for whatever may come up with me.

    I am learning so much on this thread. I'm also using the baking soda & salt water rinse hoping to prevent or minimize mouth sores. Yep and taking Colace and Miralax too which seem to be doing their job so far.

    Starynights, I hope all went well for you today.

    I've had a very good day today. Generally I just feel a little off, but I was able to put in a full day of work, go get my Neulasta shot, walk the dogs with my hubby and cook dinner with some help from my sous chef (that would be the DH again, he really is a dear.) The nice thing was that I also felt like eating that dinner. I know worse days are around the corner, but I'm thankful for the good ones while they last.

    I had Claritin and Ibuprofen both in my system when I went to get the shot and so far am not feeling anything from it.

    I'm taking the ginger caps twice a day as Carolyn recommended for nausea and also taking L-Glutamine to try to ward off neuropathy and mouth sores. My MO is aware and has approved of both. He did tell me in no uncertain terms to lay off the soy milk, though. I know there are different views on that in the medical community, but he comes down against soy consumption for patients whose tumors were ER positive and mine was very much so. I'll definitely follow his advice.

    We got the results back from my CYP2D6 test and learned that I am in the 10% of women for whom Tamoxifen is not effective - all the more reason for me to persevere with the chemo and try to go the whole six cycles. AI's may be an option for me but I'm not thrilled at the idea because I already have ostepenia and am only peri-menopausal, although I expect the chemo will push me over the edge. We'll cross that bridge when we come to it, since I have to get through chemo and radiaion first anyway. 

    Best wishes to you all,

  • melody46
    melody46 Member Posts: 77
    edited March 2013

    Hi GailAnn  what is the cyp2d6 test?

  • AnnieLane
    AnnieLane Member Posts: 757
    edited March 2013

    It a blood test that shows if you're likely to benefit from Tamoxifen. I've read that 2 large studies show it might not be of value, but many doctors think it is and my MO is one of them. Supposedly about 10% of women will not metabolize Tamoxifen properly and are likely to experience the side effects but not the benefits. I am in that 10%. Of course decisions about hormone therapy are farther down the road for me.

  • Lmimp64
    Lmimp64 Member Posts: 88
    edited March 2013

    Hi. Is anyone having depression coming off chemo/steroids? Day four seems my worst. I'm also having jaw issues - like coming out of being numbed for a filling but so much worse - throbbing numbness? So weird. My neck/throat skin seems numb too. Am I losing it? It's been a rough few days. Looks like my recon will have to be redone after chemo.

    Thanks for any help or advise.

  • GeorgiaMom
    GeorgiaMom Member Posts: 3
    edited March 2013

    Hello Ladies,

    I just wanted to pop in to offer my support and prayers as you begin your chemo journey. I had my first of 4 Taxotere/ Cytoxan treatments one year ago today. The support I received from the incredible women here, including the lovely Melrosemelrose, gave me the strength and encouragement I needed to get through chemo. One year later I am doing great and have been wigless since November (about 6 months post chemo). You will get through this and you will come out of it stronger!! I have no lingering effects from chemo except "chemo brain" which is probably not even the result of chemo but it is a convenient excuse for my forgetfulness! :) I wish you all the best!

  • the_roadshow
    the_roadshow Member Posts: 9
    edited March 2013

    Hello ladies, I'm in the UK and due to start chemo on 15th March. I think we have a different regime over here. I'm sure my MO said it would be FEC. I'm also going to try out a cold cap and am probably worried about that the most as I hate the cold. But with 2 weddings to go to this year I figured it's probably worth a shot. I've got a hydrogen peroxide 3% mouthwash I'm hoping to use if I have any problems. I was very reluctant to undergo chemo treatment but my Onco score came back as 44 which kind of made the decision for me. Really good to hear how you're all coping with the treatment as it gives me hope that it won't be as bad as I fear.

  • AnnieLane
    AnnieLane Member Posts: 757
    edited March 2013

    Lmimp64 I'm on day three after my first infusion and not feeling depressed, but very weird, sort of off. I'm experiencing random sensations like what you describe as throbbing numbness too - in my head, ears, jaw...

    And the constipation from the first two days has giving way to some diarrhea today.

    But it could definitely be worse. No nausea to speak of and so far no real bone pain from the Neulasta shot. I'm staying on Claritin and Aleve to try to ward that off.

    The_roadsho, welcome and we wish you the best. With an Onco score of 44, yes, I'd agree the decision was made for you. At least when things get tough, you will have no reason to look back and wonder if you made the right one.

    GeorgiaMom, thanks for the encouragement and prayers! We too will get through this! Smile

  • Lmimp64
    Lmimp64 Member Posts: 88
    edited March 2013

    GailAnn, thanks. I was thinking I was the only one.



    Roadshow, I'm originally from uk. Keep us posted on the cold caps. A woman in my support group used them with great results. I'm regretting not trying them.

  • melody46
    melody46 Member Posts: 77
    edited March 2013

    Welcome Roadshow my onco score was high too it was 30 so although I was reluctant I think I made the wise choice. 

    lmimp I feel like I'm on the emotional roller coaster, thinking I need to talk to my dr. because this feels insane. Also having problems with my ear and jaw, they put me on antibiotics for my ear pain but I think it might be from clenching since on day 7 of antibiotics no relief from the pain.  Just grateful it comes and goes so not too bad kindof feels like the pressure you get on an airplane when you need to pop your ears. Who knows so many little aches and pains I'm getting immune to them.

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited March 2013

    melody46- You may a case of tmj from clenching your jaw at night.  You may want to eat softer foods and put a warm compress on your jaw to help the pain.  I have tmj and you are describing exactly how it feels when it flairs up.  My dentist also suggested to take advil to help with the pain.  Make sure you ask your onco if you can take advil since not all oncos will allow you to take it while on chemo.  I also let the warm water run down my face when I'm in the shower.  That helps a little bit too!  Hope you feel better soon!!!

  • melody46
    melody46 Member Posts: 77
    edited March 2013

    Melrose it hurts in your ear like an ear ache?

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited March 2013

    melody46-  Yes, the ear pain can feel like an ear ache.  I pingponged between my GP and to a dentist before it was determined that I had tmj.  The dentist prescribed a nighttime mouth guard.  It also turned out that I had a recently placed tooth crown that had not been properly adjusted which was causing the tmj.  I switched dentists and got the crown adjusted and no more pain.

  • Lmimp64
    Lmimp64 Member Posts: 88
    edited March 2013

    I had tmj before chemo and neulasta Am thinking it gets aggravated by the neulasta?? Mine is much better today. Hope yours is too.

  • melody46
    melody46 Member Posts: 77
    edited March 2013

    thanks for the info I'll worry less about it now, going to try some heat and see if it helps

  • Starynights
    Starynights Member Posts: 64
    edited March 2013

    Wow Im impressed that you were able to work ! The first infusion has kicked my behind. EXTREME fatique, but praise God no real nausea. Just a few little twings and that was all. Bad metallic taste in my mouth have only been able to enjoy fruit and some rice crispies. Dont want anything to do with hot food. Still pretty tingly all over I guess from the steroids. Does this stuff wear off before the next infusion? Do you have normal days? I went to the store today to get a few things and slept five hours when I got home. Does anyone else do this? I get the immune booster tomorrow and have started on the Claritin already.

  • Milo5
    Milo5 Member Posts: 24
    edited March 2013

    Hi all,  Just found this blog.   I was diagnosed with Stage 3a ILC on 12/13, 1-11 lymph nodes positive, right mastectomy, left prophylactic mastectomy, total axillary lymph node dissection 1/24/13.   I am six days out of my first cycle of 4 TC treatments, originally I was to have 8 treatments over 16 weeks but my pathology was better than expected so they switched it to 4 over 12 weeks.   I planned for the worst (and hoped for the best), took time off work until November.    Well, I emailed my boss yesterday and asked to come back a for few days a week, Im bored!   lol  

    I feel way better than I expected, even went out for mexican food with my family last night (margarita included).   I do have the awful mouth taste, like gargling gasoline, but using the Biotene mouthwash which helps a lot.    Had body aches (like a bad flu) for a few days after Neulasta shots (which is given 24 hours after chemo influsion) so im grateful for the Claritin/Aleve advice.   I will try it next round.   Im a very energetic 52 year old who works, works out daily in spin, and am pretty hyper (boy was THAT interesting on the Dex)  My kids just laughed and my husband wanted to know if I could be on it all the time (so much got done)   

    I figured I wouldnt be in spin class for months but now listening to you all, I think I will try to go back (modified of course since I havent been in 2 months) this week.   At least I will go to the gym and do SOMETHING.

    Still waiting for the dreaded hair to fall out (with TC the onc said it is usually about day 14.... anyone have any advice on that?   I have a really cute full wig and a "halo" wig to wear with hats.   Since I have never been a hat person, this should be interesting.  

    Im surprised at the lack of nausea, I thought it would be much worse.   My daughter brought me frozen yogurt (Mint chip) which was so cold and refreshing and aleviates the taste in your mouth for a bit.   I will have some every day. 

    Good luck to all and I will share updates and look forward to yours.   I am on a three week cycle with the next to be March 26th.   I jumped on this site to see if the treatments got worse after each, but my understanding from you all is it pretty much does not.   Im also waiting to meet with the radiation oncologist next week.   With the original plan it was 6-1/2 weeks of radiation after chemo, but the general surgeon said she doesnt think I need it while the oncologist thinks "its not a bad idea".   Im leaning toward no, but we will see.   I currently have expanders in place and getting saline injections every few weeks to "build the mound".   This part (the expanders being there and the injections of fluid ) I have found to me the most uncomfortable of this whole process.   But temporary so I can handle it.  

    I am SO lucky to have an unbelieveable community of friends and family and awesome support.   My kids are adults (kinda) 18,22,24 and are very supportive and a big help (and they actually do things now without me asking...hummmm :)  

    As a side note, I did get "cording' from my axillary node dissection which is also called axillary web syndrome.   I am going to PT for it but they did a Duplex scan which is a specific ultrasound looking for DVT and found that none of my veins or arteries are affected, it is more my tendons causing the problem.   The interesting thing is after the diagnostic ultrasound, my arm problem was 80% better.   So at my PT appointment today im requesting ultrasound "therapy".   We will see if it alleviates the condition all together.  

  • moderators
    moderators Posts: 8,739
    edited March 2013

    Welcome, Milo5, and thanks for sharing. We look forward to hearing how your appointment went today!

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