October 2013 Chemotherapy

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  • wrenn
    wrenn Member Posts: 2,707
    edited December 2013

    Thank you. You guys are sweet even in the middle of all you are going through. xo

  • uds17
    uds17 Member Posts: 183
    edited December 2013

    wrenn, I'm so pleased you have some resolution and trusted your instincts. we all need to take a lesson from you and listen to our bodies!

    btw, is anyone else having trouble with email notifications of new comments being posted?? i haven't received any for a few days.

  • AlyonA
    AlyonA Member Posts: 49
    edited December 2013



    Hello. How are all you
    lovely ladies feeling?Happy

    My mom had a stage IIIa
    dx in early autumn/late summert. Fast forward to surgery and then chemo...We
    had chemosensitivity tests done, and her best reponses were to Xeloda and
    Cyclophosphamide. After a lot of hasstle she was put on 4 circles of those,
    that are supossed to be followed up by 4x Doxetacel + Xeloda.

    She is having her 4th
    circle next week.

    Mom is a bit shy and
    vicariously infiltrating tbrest cancer.org trough me. So, I have to ask a few
    things on a very sensitive subject.

    Mom is NOT loosing her
    hair. She has some mean Xeloda induced lacerations on her hands, and her overall
    skin is horrible (I have never seen her look so old, and frankly it scares me
    out of my panties) but she is feeling fine, no nausea, no nothing. Her blood
    work is super (considering) and her immunity if oh-so-on. Overall she is doing exceptionally
    well!

    People are constantly teling her that she
    should be horribly sick – but she’s not. Not even a little bit of nausea. She
    feels a bit ‘icky’ a half an hour after having her nigtly dosage of Xeloda (oral)
    but she never threw up, or had the urge to. Friends of her's on the oncology ward
    where she gets her treatment that have similar therapies all had hair loss
    after their second circle (most after their first). Her hair isn’t thinning or
    anything, and it most certainly is not falling out all that much, even when she
    brushes it. She was on board with cutting it all of and getting a wig, but we
    are in a kind of limbo now, and it’s a bit weird :) She has luscious amber
    curls and I am sad about them, but she just want to have more info if the
    therapy is going to hit her more when she least expects it. It’s a bit of a ‘around
    the corner’ situation, since more therapy is yet to come.

    I just want her to be
    prepared. The no-hair-loss thing is a bit scary. You get all prepared, and then…and
    then….still waiting. The waiting is killing us.

    Any of you have experience
    with Xeloda, Cyclophosphamide or a combination of those?


  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited December 2013

    Hi AlyonA

    I can't give you any advice or tips since I have never heard of those chemo meds before. Are you outside of the US? I do know everyone is different as far as the hair loss & side effects. Hair loss may happen to her next round. And she may be lucky & not get much for SEs but they are cumulative so each week after her infusions she could feel a bit worse.

    All the best to her & to you too!

  • Headeast
    Headeast Member Posts: 619
    edited December 2013

    Alyon, every body has different SEs to chemo and some people lose their hair or have nausea. I didn't suffer from nausea. The MO put a lot of pre meds before chemo. Your mom still has another set of chemo coming.

    Tell her not to worry. All SEs can be controlled, maybe not at a 100% but medicine has improved so much. Seems she is also half way to chemo! Yay!

  • Headeast
    Headeast Member Posts: 619
    edited December 2013

    Wrenn, I am following this thread and has very helpful information about nutrition. 

    http://community.breastcancer.org/forum/79/topic/811273?page=9#idx_265

  • Pam358
    Pam358 Member Posts: 294
    edited December 2013

    Heading to chemo #6 (Taxol #2) in just a few minutes. I don't really want to go, but I will.

  • TeamKim
    TeamKim Member Posts: 568
    edited December 2013

    Big girl panties, Pam.... (((Hugs))) In your pockets and with you all the way!!

  • Headeast
    Headeast Member Posts: 619
    edited December 2013

    yes, Pam! You can do it! One less to go!

  • wrenn
    wrenn Member Posts: 2,707
    edited December 2013

    Headeast, Thank you for the link. I will save it and read all. This morning I am craving Mcdonalds poutine. Have never had it but seeing the commercials make me want it now that I have been advised to go low fat. I wonder if it is only in Canada?  Will try to resist. Once I start reading the nutrition thread I will get inspired I am sure. Thanks again.

    Pam, I can't believe you are on #6 already. sheesh.  I hope it goes ok. You are hanging in. xoxo

    Hugs to everyone else still plugging along. Even though it is day 23 after my one and only treatment I am still feeling it so I really feel for you people piling on more on top of a not quite recovered system. :-(   I am still losing hair and have aches and a bit of nausea....nothing substantial but enough to know I was attacked with chemicals. 

  • TeamKim
    TeamKim Member Posts: 568
    edited December 2013

    Wrenn -- lol "attacked with chemical" -- describes how I feel exactly!  I am toying with the idea of telling the MO that I am just done -- my intuition tells me another infusion will be the worst yet.

    Despite only having Cytoxan last Thurs, I still have had the itchy rash pop up in my perianal area this morning..... Waiting for the MO office to open so I can make my (almost) daily problem patient call -- I can just hear the nurses "It's Kim again (sigh), you take her this time..."  Will have to bring them some treats on Thursday when (if) I go in -- those gals have been almost as supportive as you BCO angels.

  • wrenn
    wrenn Member Posts: 2,707
    edited December 2013

    I don't blame you Kim but you are almost there. Give it a try. The scary part is once you have the infusion (which is the easy part) there is no going back.

    I was relieved that my oncologist (who is the top guy in my area) was open and honest about how chemo does occasionally kill people and that he did not want to kill me. He also had a "not worried" attitude as if not continuing was no big deal. I am sure that was to lessen my fears but I appreciated hearing it. I think having a good attitude goes a long way and it is so hard to keep a good attitude when you feel like crap. I am continually amazed at the strength shown by all of you and that you never give up. Really damned impressive.

  • Headeast
    Headeast Member Posts: 619
    edited December 2013

    Wrenn,  i read somewhere that we need to lower our fat intake. Olive oil ok but not cooked, etc. you will find in that thread lots of good information.

  • TeamKim
    TeamKim Member Posts: 568
    edited December 2013

    Thanks for the encouragement, Wrenn.  If I thought an additional treatment would do anything for me, I might risk the potential life threatening reaction.  I don't think I have a bad attitude about it, just some very important concerns which have not been addressed by my MO.  

    This morning, I saw my PCP (who is an internist and Chief of Staff at our hospital) to have him take a look at my back (achy from the car accident Friday).  Since I was there, I went over all of my chemo treatments and side effects with him and asked him for his thoughts.  He said the risks of extreme allergic reaction to another infusion outweigh the benefits, since I had clear nodes and clear margins, so he would say to stop.  "Another infusion would be tempting fate," he said, and given that my nodes were negative, "there is nothing to be gained from more chemo." This gives me courage to tell my MO that he better have a very compelling reason why I should get another tx.  

    Talked to the onc nurse this morning, and she said that I am having very unusual reactions: "quite unique" she said.  She also said MO will probably want to try Taxotere again, now that I have the rash from the Cytoxan.  Since this very well could turn into hives in the next couple of days, I have already decided there will be no infusion of anything tomorrow.  IF he can make some kind of very compelling argument, then I will insist on waiting until after Christmas so that the reaction from last week's infusion can subside and my blood counts can recover as well.  

  • wrenn
    wrenn Member Posts: 2,707
    edited December 2013

    I think you have a great attitude Kim and I hope you didn't think I was pushing for more. I sort of had the impression you wanted to keep going but reading again I agree with you that it is time to stop. I am sure you have done what was needed (I am pretty sure my onc thinks one treatment did the trick) and the risk really is not worth it. I hope your onc agrees with you. Keep us updated.

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited December 2013

    Hi all,

    I've been reading but not really writing. Tired and taking ativan more regularly. I have been having some mean mood swings!! Wrenn glad to hear that the doctors confirmed what was best for you. 

    Team Kim, it's so hard to have conflicting responses, There was an article that I had read in the NEW York Times about a cancer doctor whose wife was diagnosed, he worked out of Sloane. He had talked about a patient during his residency that had died during the infusion while he was a resident. That was my biggest fear and I talked to my MO about it and he adjusted my pre meds and post meds to accommodate my fear and also talked me through the whys. We are absolutely poisoning our bodies in the short term so we can beat this monster in the long term. Good luck with your conversation with your MO tomorrow.

    Hang in there Pam!

    lgk hope you are feeling better.

    I am having lower back pain, I can't stand for a long time. I will mention it to the nurses today during my picc line dressing change, but it is freaking me out a bit. I have gone from running and weight training pre cancer to back pain when standing...unreal.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2013

    alyon - I don't believe that Xeloda has hair loss as a side effect, so it would not be unusual to still have hair - but it does have symptoms of hand/foot syndrome as a SE, so that might explain her skin issues.  Cyclophosphamide is more frequently seen as Cytoxan here, and it is usually given in concert with Adriamycin or a taxane, thus the hair loss with the combo, but hair loss independently of the combination is also not listed for Cytoxan.  Are you concerned that the drugs are not working properly because she is not having the usual "chemotherapy" side effects of hair loss and nausea?  Don't worry too much about this - not everyone has the same experience with nausea and these drugs, I had a couple of abrupt episodes of nausea with TC, but did not have persistent nausea throughout my infusions.

  • Kindajojo
    Kindajojo Member Posts: 7
    edited December 2013

    hi, had my first tax last Thursday , after the FEC. Ican't believe it was a week ago it's been a nightmare.  i hope someone has some inspiration to spare.  

    Thought  that the "no nausea" was a good sign' then the diaorrea set in. I have lost about 4 kgs this week.  

    Usual symptoms sore throat, mouth feels like dry cotton wool, but no ulcers, and the tingling in the toes and fingers, I have found wrapping my feet in a towel with a frozen slicka pad good. That's been 3 days. 

    I thought I was through the worst but day 6 the bone pain set in, my spine felt like it was on fire and pulsated with my heartbeat, hips were the worst. Some relief  with paracetamol and iboprofen. 

    The worst is my mental attitude has taken a dive, I am having trouble finding the motivation to find something positive..and it's Christmas and the family arriving, I feel like the grinch whose going to be the dampener on things. 

    I know many of you will be in the same situation at this time of the year. Ther seems to be so much to do and I can't seem to move a muscle without pain. 

  • TeamKim
    TeamKim Member Posts: 568
    edited December 2013

    Wrenn -- no worries, I knew you weren't being critical, just supportive and encouraging.  XO

    Onc nurse finally called back after texting with the MO.  I meet with him tomorrow, and she says we can "hash it out" prior to doing anything.  He has ordered both Taxotere and Gemzar and will decide tomorrow, she says.  He will have to make one hell of a compelling argument to get me back in the big girl chair.

  • Pam358
    Pam358 Member Posts: 294
    edited December 2013

    Kim - hang in there tomorrow during your appt with your MO.  We'll be in your pocket giving you strength to help you feel heard and make the decision YOU want to make.  

    Wrenn - have never heard of poutine at a McDonald's here in the US. I grew up near the Canadian border so I at least know what it is!  Why is it as soon as someone tells us we shouldn't have something we want it!  We are funny creatures.

    SchoolCounselor - sorry to hear about your back pain.  I get some from my Neulasta shot - not good. 

    Today's Taxol #2 went fine - no reaction, just a long day in the chair. Now it's time to wait for the side effects.  Just hoping that the majority of them are mild for Christmas.

    Sending positive thoughts and love out to all of you posting and those just reading.

  • Headeast
    Headeast Member Posts: 619
    edited December 2013

    Pam, how many  taxol treatments and how often?

  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited December 2013

    pam-How bad is the taxol? My first one is due after Christmas...I don't want to do it.

  • uds17
    uds17 Member Posts: 183
    edited December 2013

    First day back at work after chemo last week. Mentally I was fine- I could focus and make good decisions. However, my body was a different story. I moved so slowly! I stopped at Trader Joe's to pick up a few things on the way home and it took me FOREVER to walk across the parking lot. This whole BC experience has made me even more aware of the fact that you can never judge what someone is feeling based on their outward appearance. Today I looked fine: nice wig, makeup, cute outfit, etc. But I didn't move the way one would assume based on my appearance, and I have to admit that had I been in a car waiting for me to cross the parking lot, I would have gotten impatient.

    A quick thing about Trader Joe's: since my mouth has been so dry and everything tastes funky, it's hard to find palatable things to drink. Trader Joe's has a sparkling water with lemon that has been one of the few drinks I actually enjoy. Another is a non-alcoholic beer they carry. Try them!

    I sometimes have these episodes of sudden sweating and I'm not sure what they're about.... chemo induced menopause, other chemo side effects, or a nervous system response that's my version of nausea. I decided to try a compazine today when I had one of these episodes and it worked! Do any of you have a similar experience??

    Ladies, I hope you're all feeling ok.

    xoxo

  • Furfriend2
    Furfriend2 Member Posts: 299
    edited December 2013

    Wrenn, all the best for you lady! I am pleased to hear you have a great MO!  Avoiding fat would be hard for me but I know if my Dr. said it needs to be done for max health bennies then by all means I would start little by little take baby steps which is easier than going cold turkey. My X and I were just chatting last week about eating better. He has cut out most bread and pasta ( Glycemic issue ) and feel better and lost 10 lbs in 3 month. I need to take notes as I eat much of this bad stuff.

  • Gramof2boys
    Gramof2boys Member Posts: 194
    edited December 2013

    Wrenn, glad you feel good about your decision and MO is on board too! I'm on to Taxol #3 on Friday, I hope for no freaking stomach pains this time. I have only a slight peach fuzz on my head with a few longer ( 1/2 hairs on my head but it is still shedding if I rub my head, when does it stop falling out? I'm ready for it to start growing back. 

    Team Kim, good luck with your decision tomorrow.

    Hope everyone has a good weekend with minimal problems!

  • Furfriend2
    Furfriend2 Member Posts: 299
    edited December 2013

    Pam, how did you do with 2nd Taxol/ you are right behind me.

    Team, let us know how goes it.

    I am doing pretty good this round. They cut my dosage of Benadryl in half and very slow drip. I am having issues with hands/feet itchy and peeling like eczema/dermatitis. SE's of Taxol which has  been conf by my MO. Some of this I think is the super cold weather as well and I normally have dry/sensitive skin to boot.  I am taking benny at night now to help with the se and putting on more hand/foot cream.

    My nausea is much less with Taxol.  AC I always felt icky/nausea for 7 days then it would ease up.

    Kinda, My bone pain seems moderate but definitely there with Taxol.  I am taking Advil or Tylenol for this every day. On a good note no Neulasta shot this time as WBC was on the high side. Rest of counts low/borderline.

    My echocardio results came back and most of it seems good per my nurse practitioner but the reports data stated some things I need clarification on.

  • Furfriend2
    Furfriend2 Member Posts: 299
    edited December 2013

    BTW,

    I did take the Ativan pre infusion this time and yes it did the trick!  My nurse even asked me if I was ok as I am always overly anxious.   I took an Ativan yesterday as well to help with my stomach.  Seems to be helping.  Thank you gals.

  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited December 2013

    FurFriend2

     I am not Pam LOL but haven't done too bad on Taxol, so far. Had #5 on Tuesday. 7 more to go. 

    I get pain in my knees, and have the facial tingling/numbness but not the toe & finger neuropathy. 

    I feel so much better since being done with A&C & starting Taxol cause NO Neulasta shot anymore & mostly because my blood counts are almost normal now, finally got past that draining wiped out anemia.

    Vintage Gal

  • Headeast
    Headeast Member Posts: 619
    edited December 2013

    Vintage, I love your picture and your cute dog!

  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited December 2013

    I have not been able to find anything to drink at all while on A/C...I've been very dehydrated. Is that easier on taxol or do the eating/drinking issues remain the same?

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