Starting Chemo in December 2013

Options
13435373940168

Comments

  • beths1
    beths1 Member Posts: 44
    edited January 2014

    mikesgirl17:  thanks for the response.  Our rashes sound similar..the chest and back the worse locations.   No hot tubs here in RI.   It is still not going away and it's making me a little nervous.  Applying a topical steroid creme  but not having an impact. Maybe the decadron at the upcoming infusion will either kick it or make it worse!

    Went out for dinner tonight for the first time since diagnosed in November........feel so self conscious with no hair!

    Watched the you tube video last night at 1am...good stuff

    Hope everyone enjoys the weekend and GO. Patriots!!!!!!

  • RobinLK
    RobinLK Member Posts: 840
    edited January 2014

    Jackie, MX with 9 positive nodes. Clear margins after lumpectomy but too narrow. All tissue clear with MX. Still having rads. Too many positive nodes......

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    thanks for the info on the hands and feet...glad I haven't gotten it, but I'm also an office worker and must admit my treadmill is used only a few times a week for about 30 minutes...did walk out in the snow and ice the other night, so love the fresh air.  So probably my immobility and lack of exercise is why I haven't gotten the feet issues.

    Appreciate the input on rads, my BS and PS were in agreement about no rads for me, I asked them prior to getting my implants, for I knew rads and implants don't go well together.  I will go to the RO consult, possibly he agrees, who knows.

  • J4DC
    J4DC Member Posts: 80
    edited January 2014

    hi, ladies, I found all your posting encouraging, hug to you all!

    Momat, my MO ordered BRCA test for me too because I was diagnosed relatively young  (before 50) .Insurance covered it and I talked eith a genetic consular, who I found helpful. I am brca1&2 negative. But she said they may follow up with me if some new genes come up in the future. I have a big family from both side, none of them have any kind of cancer, why??? 

    I had my 3rd AC on Thursday, one more to go in two weeks. Same as a lot of you, I am also going to have 12 taxol. I heard something about the cold mittens (elasto gel?) to help reduce the neuropathy, anybody knows if it works?  Thanks!

  • Carol99
    Carol99 Member Posts: 116
    edited January 2014

    thanks for the info, I hope my next infusion is better, 1/27.  I'm curious a Triple negative ladies, diD any of you have positive lymph nodes?  The reasons my MO is not prescribing tax, what I was told, is because I had no lymph node involvement, my cancer was .09 and stage 1a.  But I can't help compare dx & treatments.

    I know I'm in the best place Dana Farbaer & my MO is a leader in the genetic cancer field but I can't help be nervous, to go through this again would be hell.

    But for this week I feel good!  And, it's game day GO PATS!!!

  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    I was just going through my information that I got from my chemo class to prepare for Taxol.  The chemo class talked a lot about neuropathy that Taxol causes and told me that Glutamine helps with eliminating or lessening the Neuropathy.  There are bunch of studies on this if you do a google search.  Of course talk to your MO about this.  I've pasted some information below.


    Glutamine Protects Your Nerves

    L-Glutamine powder is available in health food stores and from naturopath shops.  Taken in juice or water before an infusion, L-Glutamine has been shown to have a protective effect on nerves. It may form a cover on nerves in your hands, feet, and digestive tract, reducing or deflecting damage that could be caused by chemotherapy.  Glutamine is a nonessential amino acid that will not interfere with your chemotherapy drugs, nor will it affect your chances of cancer survival.


    How To Use Glutamine For Neuropathy

    The amount of L-Glutamine powder to be used will vary depending on your chemo dose and the type of drug being used.  A typical dose would be 10 grams taken three times a day on the day of chemo, the same dose for the following five days, and then 10 grams twice a day for a week.

    For low-dose chemo, you could try one scant tablespoon of L-Glutamine powder about 30 minutes before your infusion, then take the same dose daily for one week. If numbness and tingling recur when you stop taking L-Glutamine, try taking it for a few more days as your symptoms taper off.


    Benefits Of Glutamine

    L-Glutamine powder is not expensive, but its value in preventing peripheral neuropathy is priceless.  Taking glutamine can improve your quality of life during chemo, but it might not work for every patient.  There are also prescription medications available to help with pain and inflammation related to neuropathy.

    Before taking any nutritional supplement or substance like L-Glutamine powder during your treatment for breast cancer, talk it over with your oncologist.  Work together with your health care team to protect and improve your overall health.

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    I hope your rash clears up soon.  I'm sorry you are feeling self conscious.  I have found some great hats that got me out the door when I first lost my hair.  I'm sorry I thought you were the one with the hot tub too.  I just know that the bath was not a good idea.  I put baby oil on when I was still wet getting out of the shower and then wiped off.  I didn't need any lotion and skin was baby soft and no itching.


  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    I have read some things about using ice on hands and feet during Taxol infusions to prevent neuropathy.  This is my biggest concern.  So after Christmas I went and bout 2 big Christmas stockings.  I am going to wear wool socks and put soft home made ice packs (Soft so they can form around my whole foot.) in the Christmas stockings so the ice packs stay in place.  I also have some home made fleece ice pack holders that I will be wrapping around my hands.  I figure it can't hurt right.  The Christmas stockings are going to look silly, but I don't care what other people think. I start Feb. 3.  I'll let you know how it goes.

  • J4DC
    J4DC Member Posts: 80
    edited January 2014

    NEskir99, I am at stage 1, triple negative, 0/5 nodes pos. my treatment is 4xAC, every two weeks, followed by 12x taxol weekly. I agree, I am wondering about all these decision too. My old MO wanted to do taxol every three weeks, then changed to every two weeks. My new MO (hopefully more experienced) recommend weekly taxol for reduced toxicity. 

    I am also back and forth with BMX and radiotherapy. I had lumpectamy and the magin was clean. Some says lump+ radiotherapy give the same benefit as BMX. Will see mo tomorrow, hopefully somehow the decision can be made. 

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2014

    beths, I hope your TX goes well on Tuesday~

    rhgsr, Glad you are feeling better! I hope you can get to your TX next week.

    welcome Jodi!

    I think about you young ladies with children often and how challenging it must be for you. I hope you have the support you need to make it as easy as possible!

    day 3 after 3rd TC. Feeling okay except not getting any sleep. I am always happy when my last day of steroids is here, which will be tomorrow! Thrush again, but have my meds already. Had a little bit of back pain last night, but seems to have subsided.

    I hope you all enjoy the rest of the week-end! Fight on!!

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    I'm getting busted out of here today. Finally. We will decide on chemo this week. 

    Thanks for your support ladies. :0)

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited January 2014

    I am having weekly taxol now, and I can tell you it is not bad at all.  I read about the ice and all as well.  I do eat ice chips during my treatment and I use Arm and Hammer mint toothpaste.  I haven't gotten one mouth sore.  As for the gloves and feet part, I haven't done anything yet. I will this week.  I am just going to get two tiny bowls and fill them with ice water when I get there.  Like a spa treatment.  I haven't had anything yet and next week is treatment 6.  

    I was given a big fat hell no on cold caps at MD Anderson,  I wasn't going to anyway, but I asked.  Now, MDA is so strict and I call them the Big Bang Theory geeks, but they stated cases of scalp mets.  Nothing ever with hands and feet, so I feel like I can ice my fingernails without looks now:)

    Is anyone gaining weight?  I am right under 5 feet, and needed a few extra since I was down to 90lbs.  I notice the difference in my face in a good way.  My cheeks were sunken before, which was one of the signs that worried me before dx.   I am not sure if it is my expanded chest (OMG they are huge) or the steroids.  But I am up 5 lbs either way.  In live in my workout gear anyway lol! 

    I think everyone ending their first treatment and heading into taxol will be happy.  Taxol is easier.  Might be more annoying since it is every week, but not that difficult.  I'll be heading to the mean stuff, but at least it will be every 21 days so I won't have to drive 13 hours a week to Houston! Silver lining y'all:).   

  • kimie06
    kimie06 Member Posts: 215
    edited January 2014

    Welcome Jodi..... wonderful bunch here.

    its me that has a hot tub.. Winking I think I mentioned it earlier on, as I wanted to avoid having a port.

    DJJ thanks for you post on the Glutamine definatley going to ask about this.  My 4th treatment of AC is on Tuesday then onto taxol on February 4th, being a hairstylist I am hoping to avoid the neuropathy.   

    I should also mention as some were asking I am close to being triple negative I have a slightly positive receptor for tamoxifen.  I am not sure why some are being treated with Taxol first, must depend on the size etc. I was told to not compare myself to someone as Triple negative as I have that one little variant.  Who knows....

  • Leealice
    Leealice Member Posts: 87
    edited January 2014

    So sorry count it all and rhgsr ended up in the hospital. Glad you are getting out rhgsr!

    Welcome Jodi

    Neskir99. I'm triple neg and also scheduled for my next infusion on 1/27. I'm doing 6 treatments of TAC. My nodes were clear but MO suggested it because my cancer cells were grade 3 at 95%. My T is taxotere (same as Taxol?)

    Side effect-red rash on face/cheeks and eyelids. feels like a windburn or sunburn but it's not. constantly putting aquaphor or something on it.  Got it after first chemo and it went away. 10 days after second chemo it came back. I hear it's an A chemo side effect. Anyone else have this? People keep telling me that my color looks good not realizing that's it a rash that I've tried to cover up with makeup

  • Goldie8469
    Goldie8469 Member Posts: 90
    edited January 2014

    I keep reading about chemo class.  I was never offered that.  I start Taxol this Thursday.  I am so glad to be rid of the red devil.  I appreciate any tips. Did anyone experience nausea with Taxol?  

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    Leealice I got a rash with my first TC but not the 2nd or 3rd.  My T is taxotere and it is different from taxol.

    Goldie I hear taxol is easier to take. You might want to post your question to the starting in November group to see if anyone has started taxol yet.  If they haven't already some will be soon and they are sweeties.

  • Goldie8469
    Goldie8469 Member Posts: 90
    edited January 2014

    Thank you QuirkyGirl.

    Has anyone experienced swollen glands in their neck.  One glad is really swollen. I have no fever but it hurts to swallow. 

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    I had swollen glands in my neck the first treatment.  Very uncomfortable and they worried me but no fever.   I also had a bad sore throat and icky on my strep carrier tonsil but it wasn't strep.  When all was said and done the strep tonsil was smaller and healthier than since grade school!  I think chemo wiped it out.   Maybe you're fighting something viral?   It's hard to know what is the drugs and what is illness sometimes.  Hope you get some relief!

  • J4DC
    J4DC Member Posts: 80
    edited January 2014

    welcome, Jodi! Thanks for the taxol tips. I have gained at least 6 lbs since AC started. :-( I thought it was the opposite doing chemo. Steroid always give me round face and swollen belly. I know it's the last thing that should be in my mind, but it's so annoying! Sorry...

    Hope you all have a great night with minimum SEs. 

  • Leealice
    Leealice Member Posts: 87
    edited January 2014

    My weight has stayed about the same. I always seem to lose a few the week of chemo and it comes back in the 3rd week when food taste good again. I haven't lost my appetite, food just taste different and some things I used to love, like sweets and coffee don't taste good anymore. I'm not a big egg eater but have been craving eggs and they taste good

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    I lost my appetite with my first round and my tastebuds go quick and don't fully return in between.  Only sour tastes remotely normally and most everything tastes bad.  Down 15 lbs which is good considering I had to eat tons of protein to grow skin after a post op infection and had put on 20 doing that.  Can't wait to taste food again though.

  • oranje_mama
    oranje_mama Member Posts: 260
    edited January 2014

    Welcome Jodi! 

    I don't have any pain, but do have swelling in my feet and hands.  It's not painful to me, and as far as I'm concerned my least bothersome SE, but my MO is really concerned about it.  It's a SE of the Taxotere, and MO said they will hold or ultimately reduce doses if it gets worse.

    I think it's contributing to crazy ups and downs on the scale for me.  Literally I am swinging +/- 15 pounds within a week.  Up and down.  I think with the Big D I am losing a lot of water weight (and other weight) and then with the swelling, crazy retaining water.

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    my weight fluctuates up and down 5-6 pounds, when I eat I eat allot and seems to be carbs, creamy potatoes, Mac and cheese, and I do like eggs and creamy soups.  I had the bog C a few times but last round the senna smooth move tea was my go to and worked well.

    Jodi, how about hair?  Some report on taxol it starts to come back but the brows and lashes thin and go as more treatments.  Getting my anxiety already for Thursdays #4 AC...only good thing is it's the final one, then I get three weeks off to go on my trip, which I hope I'm prepared for.  Have my sleeves for airplane and will wear my mask, will avoid crowds best I can and take my own plastic utensils.  So look forward to this break and to get out of the cold and snow for a few days.  Anyone else do any traveling yet?  Weekly taxol for 4 months seems like a lifetime...I'm hoping no zofran and allot less steroids, and I'm glad no neulasta shot.

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    I will be doing dose dense Taxol x 4 starting on Feb. 3.  I have hair regrowth since I shaved my head bald on New Years Eve.  The doctor told me it is new hair.  I just wonder if I'm going to lose it during Taxol.  My eye brows are getting very thin. I am looking forward to a couple extra days off before the next chemo.  I was suppose to have some fun with my sister today, but had to cancel.  Stupid Neulasta shot.  I feel like my head is full of insulation and my upper body feels like its been hit with a pillow case stuffed with coins:(  Oh well, could be worse.  Have a good day everyone.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2014

    Goldie, my chemo class was the infusion nurse going over my treatment and possible SE's. It was right before my first infusion. She gave me paperwork to take home. Was somewhat helpful. No swollen glands here.

    jackieak, I haven't travelled yet, but am planning a trip to Tucson on the 29th. I hope nothing stops me! It's my Mom's (a BC survivor of 20 yrs!) 80th b-day and all of my siblings will be there, which is quite a feat, since we live all over the country. Looking forward to getting away; only bad thing is I have one more chemo when I get back....I hope your next TX goes well and you are able to go. I am nervous about my last TX as well, as this one seems a bit harder than the last two. I just want to be done already! Ditto on the steroids...will be glad to get rid of them for sure.

    mikesgirl, are you taking Claritin prior and after Neulasta? I found that my pain was a lot less this time around than the last two. Thanks for the info on the hair growth!

    orange-m, I think the  steroids help with that inflammation. Are you on them also? My MO cks my ankles every time I see her. I guess Taxotere can cause severe allergic reactions. Staying hydrated is hard, but so important. 

    no weight loss here...I wish! Fluctuates a bit, but pretty steady. I would love to lose 15lbs when this is over!

    Have a good week, ladies!

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    keepthefaith, yes I take Claritin before during and after the Neulasta shot.  I didn't once and it was awful.

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited January 2014

    Jackie- Mac and cheese and potatoes..ME TOO!!!! Exactly lol!  

    As for hair, I shaved mine Friday after round 5 of 12.  Eyebrows and lashes are still here.  I have a FB page "Cheer for Jodi" where I took a pic of my shaved head if curious.  I have heard it does come back if you had the big stuff first.  I am reversed, so it starting falling out really shedding bad.  I could have waited but I know I am going to lose it with FAC in 7 weeks, so I'd rather not look at it slowly falling out now.  

    Another SE is emotions.  I have been up and down.  I had a BC survivor tell me that is another lovely SE.  Great- like it was easy dealing with this already lol!  

    I take Claritin daily and when I forget- I feel it.  I am a past gymnast and current cheer coach, so my body has been banged up.  It hurts in my usual places with the chemo.  I do swell sometime in my right had,  I broke that in three places though when I was younger and it is the same side of lymph node removal.  No numbness yet.  They said treatment 9 perhaps is where it gets rocky.  Not rocky compared to other stuff, but where you might be more tired and have numbing.  So far so good!  I hope I am getting you less anxious about taxol.

     I wish it was the only one I had to do lol!  My husband calls it chemo cocaine because I not down hardly at all.  Sometimes a headache or a pity party for one moment but that is about it!  

  • J4DC
    J4DC Member Posts: 80
    edited January 2014

    I went to see my MO today for AC follow up. She said taxol should be a lot easier and suggested me using cold pack for hands and feet. She said they saw huge improvement in neuropathy in the clinic. I am going to bring mine when it comes to taxol - hope it works. 

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    keep faith, so inspiring about your Mom and 20 years, it sounds like a great party for her!  Will you fly or drive?  I'm going to be one of those Mask people on the plane but so what.  My guy has me in first class, so not so crowded there, we do have to continue life and enjoy when we can through all this or I would truly go insane.  I miss my old normal, but know I have a new normal now and will in the future but I'm not giving up things I have always enjoyed...need to improve on exercising and eating healthier, good thing I love veggies, and the carb cravings I hope diminish when this is all over...but dang those carbs hit the spot now!   

    Are the cold packs only used during actual chemo infusion or the entire time?  I'm always freezing anyway so I'm hoping only during the actual Taxol.  Onward bound ladies, there is an end in sight!

Categories