Chemo June 2010

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  • VickyThomas
    VickyThomas Member Posts: 54
    edited August 2010

    Latte, I am just trying to keep a since of normal here.. I am very aware that the cancer is much worse then the side effects.. Just like everyone else here I was looking for things on what to expect. the unknown is always the scariest... I have been reading this forum for weeks now and I got the impression that it was about everyone going through the same thing and sharing their stories and giving advice on what works for them and what may possible work for others..

    Never will I post here again.. not a very friendly response.

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  • TMarina
    TMarina Member Posts: 692
    edited August 2010

    Vicky-->Please don't be put off by Latte's response.  I think sometimes the sincerity and concern doesn't always come across very well over these forums.  Latte has been a big help to us all.  I think she was just trying to say that SHE doesn't worry about the se's very much, hoping to reassure you, so you don't worry too much.

    Her info was right on--Taxotere is the chemo that has a very slight risk of permanent hair loss.  And Taxol is hard on the nails.  Some here are putting ice packs on their fingers (and toes too, I think) during chemo to prevent losing the nails.  I haven't decided what I'm going to do yet.  I start Taxol on Monday.  I will have it every 2 weeks, instead of weekly.  How have the first 2 treatments been for you?

    I hope you decide to stick with us!  LaughingWe could use your advice on the Taxol, since you've already started it.  I'm nervous about starting another new chemo--I never know what to expect!

    Hope to hear from you soon Smile

    Tina

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  • TMarina
    TMarina Member Posts: 692
    edited August 2010

    Latte-->

    I really don't know what a boost is.  I asked the doc yesterday, and he didn't really give me an answer--just told me he hasn't decided yet if I'll need them.  Hopefully someone else here can tell us? 

    He reassured me that any heart or lung damamge will be minimal.  There might be a little bit of scar tissue on the lungs that might show up on a ct scan, but won't affect me otherwise.  As for the heart, the beam might barely skim the heart, and again, the only problem would be a bit of scar tissue.  I really questioned him on this, and I trust him.  He said 20 years ago heart damage was a problem, but the technology is much better now.

    Designer mom-->thanks for reminding me of that quote--I couldn't remember it the other day!  I'll "just show up"!!

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  • grneyd5600
    grneyd5600 Member Posts: 420
    edited August 2010

    Hi Gang,

    First Taxol went well.  They gave me Benadryl, and Prevacid along with Decadron and something for nausea in my premeds.  As soon as I saw the dosage of Benadryl I knew I would be asleep before the Taxol started.  My prediction was correct!  I barely noticed the BP cuff they were using.  Onc nurses say they use that the first time to keep an eye on BP.  I made out fine and then got the Avistan.  Thankfully husband stayed with me because I could NOT have driven home.  I went straight to bed when I got home and I am feeling great today!  Gosh I would love to think that will continue.  I even managed to get in 30 minutes my elliptical this morning and I haven't felt like that in weeks. 

    Girls I send my best to all of you and hope that you all make out well on the Taxol.  Onc told me that 1 in 20 have a reaction the first dose.  Usually they will cool you down and slow it down and then keep going.  He said the ones that have the reaction the first time rarely have it again.  So hang in there!  I will keep you all in my prayers.

    Hugs all around!

    Jackie

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    Latte, I certainly understood what you meant and how you meant it, and I know 'your heart was in the right place', as they say. I once was pretty down and someone on one of the boards responded in such as way that I took offense. She didn't mean what I read into what she wrote...sometimes writing doesn't bring out the inflection and tone of the author, so misunderstandings occur.  We are all on edge and trying to encourage is just as difficult as asking for encouragement.

    Vicky, I hope you don't give up on these incredibly supportive and courageous "veterans" on this board. We are all fearful of chemo and cancer. We've all had our trials and tribulations. We've had different SEs while on the same tx. We have different ways of coping and different support systems in place. But we've learned more from each other right here than from anywhere else. No one here dismisses anyones complaints or problems, nor their triumphs. This is where we come to talk, cry, scream and celebrate. It is a sisterhood of 'survivors', originally bound by circumstance, and now bound by respect and affection.

    You are always welcome here. But if you do not choose to post again, we wish you all the best with your tx and for your future. 

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  • julia2
    julia2 Member Posts: 183
    edited August 2010

    VickyThomas and others worried about their nails on a taxane chemo, my finger nails look better than usual!  I'm on Taxotere, doing the ice packs during infusion and wearing clear nail polish.  I think because my nails are getting more attention than usual they look great!  I have had a couple break when I let them get too long, but that was a few weeks ago, no problems like that lately.

    Julia

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010
    TMarina and DesignerMom, I just sent a long overdue thank you to Jayne for her words of wisdom. She posted the phrase 'you don't have to be brave, you just have to show up' back in mid-July when I was asking for reassurance and admitted being terrified of beginning chemotherapy. So now I finally said thanks to Jayne_in_UK for offering such sage advice.I needed something to hold on to...and that phrase is my mantra. Hope it has been comforting and beneficial to others, too.
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  • Latte
    Latte Member Posts: 1,072
    edited August 2010
    hi vickythomas - please don't be offended by my reply - i was tired (aren't we all) and didn't have the energy to type a long message. I agree that the unknown is always the worst - that's why i tried to give you the info about the hair loss and nail damage possibilities, and make it clear that in my mind at least, I don't think these SEs are worth spending time worrying about, that there are much worse things out there. Sorry if it didn't come across in a nice way - please don't stop posting because one thread member had a bad moment when replying - this is a great resource and it can be for you too :-)
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  • Latte
    Latte Member Posts: 1,072
    edited August 2010
    grneyd5600's post reminded me - for everyone getting benedryl before a tx - please make sure you have someone to drive you home - at my clinic you are not allowed to drive yourself home because the benedryl affects your ability to drive (and stay awake :-)
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  • JFV
    JFV Member Posts: 795
    edited August 2010

    Gettin second Taxol right now.  I V benedryl and pepcid first.  Nurse sai Taxol will be done in three hours.  Tired.  Will try to nap.

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  • VickyThomas
    VickyThomas Member Posts: 54
    edited August 2010

    @ Latte, thank you for the apology.. Taxol for me hasn't been a walk in the park.. I have body aches which I have percocet for. I don't take the percocet to often because I am back at work.. I pop tylenol like skittles during the day.. I did seem to start getting my appetite back but again I have only had one treatment.. My onc give me benadrly before the taxol. I have to take 5 dexamethasone pills at midnight the day of treatment and five at 6 am. During my treatment the benadryl was trying to put me to sleep and the dexamethasone was keeping me up.. It was a very long 5 hours.. I keep my toe and fingers polised with color because of the damage from A/C. I am not as tired but the body pain is much worse for me..

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  • kittycat
    kittycat Member Posts: 2,144
    edited August 2010

    Vicky - are you on the dose dense Taxol or the weekly one? I'm on weekly so I don't have as bad of side effects. I was supposed to get dose dense, but my onco was afraid my counts would drop (they got really low after my 4th AC). So, she switched me to the weekly dose.



    So, I just left the chemo suite. Weekly Taxol #2. Hope this goes well. :)

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  • cheyenna
    cheyenna Member Posts: 379
    edited August 2010

    Here i  am again in tears! im so sad, its depression, im sorry, i have never felt like this and im scared ill never be normal again, the lady i talked to today was great but 2 hours later im here crying again, i see ONC tomorrow and im sure she will change that happy pill, i dont know why this depression has got me, i dont like it, i hurt inside, im sorry to keep posting and crying at the same time, i try so hard, i try to tell myself today will be good! but then, the tears start to roll, i am such a baby!!! i dont know how to get through 12 more, im scared it will come back, ONC said if it comes back its 4 stage. i know i need not think of that but how? im really not trying to be selfish, i think of all of you everyday!!!  off to the bathroom to blow my nose, again! ive spent more on tolit paper then chemo

    love to all, Chey

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010
    Cheyenne...BIG ((((HUGS)))) to you.  I so wish I could make your tears and fears go away.  Remember that we are here for you if you to cry or scream or laugh or if want to chat. We all care and want you to feel better.  Bon
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  • TMarina
    TMarina Member Posts: 692
    edited August 2010
    Chey--I wish I could come and give you a big hug!  Hope your onc. can help you tomorrow.  I think of you often and pray for peace!  Keep in mind that you are taking these strong drugs so the cancer doesn't come back.  I've heard it said that our tx is the "gold standard"--it's an agressive treatment so we can live a LOOOOONG life!  When you are getting chemo, try imagining it as little soldiers (or whatever you want) going in and fighting the bad cancer cells.  Our prognosis is very good--it's possible this cancer, at the stage we are at, can be cured, not just put into remission (like other cancers)!  Its just a bump on the road of life, and soon it will all be just a bad memory!
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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited August 2010

    Well, here I am.  Been trying to work.  Last week was just okay.  Mon & Tues this week were long but okay.  I think I can work 4-6 hours a day until the end of this month when I finish my Taxol/Carboplatin treatments. Then depending on what comes next, I'll try to work up to full days.  Thankfully, my job is not physically demanding but can be mentally challenging.  I haven't told them that thanks to chemo, I'm already mentally challenged.  Maybe I can fool them a couple more weeks!

    I'm actually posting today because I've had a rough week emotionally.  Up until last week, I have remained positive (except for dreading tx days) and haven't really experienced any emotinal issues except chemo brain!  Until I was diagnosed with bc, I always believed I had a strong body and strong mind (some inherited).  I was the one who took care of everyone in the family, husband, daughter, three sons. Daughter has grown up, married and turned out fantastic and lives less than a mile from us.  Husband and sons still need considerable care!!!  Do they ever grow up?  

    Now that my body has failed me (including tx), to make matters worse, my mental facilities are threatening to fail me too.  I find that I don't want to be in public or even around people who aren't family.  If I could, I stay in my bedroom with the door closed until all tx's are done and I am back to normal. If I do go out in public, I am so self concious that I start feeling a pressure in my chest and shortness of breath.  I can't wait to get back home.  I told my husband I would NOT take depression medicine - I have enough meds flowing through my body on any given day. 

    When first diagnosed with bvc I was like alright so this is what I have.  Let's get to work KILLING it out.  There was nothing I wouldn't do or try.  LOL, I was so naive!  But, I have maintained that attitude even through all the horrible effects of chemo.  Now I find myself worrying about whether the tx is working, what if it comes back, how will it come back, will it come back really bad, do I only have a few years to live - horrible things like that and I can't shake it. CHEY - I'm wondering how your onc knows if you have a recurrence it will be stage IV. We have a similar dx except I have node involvement.  

    I've read and re-read my pathology reports today and have discovered some things I didn't know that are not good and I intend on grilling onc at next visit.  My new downer attitude is affecting my husband (I put on a good front for the kids) and that's not fair to him.  He has been so strong and supportive and helpful and he's not the strong one emotionally.  His mom was diagnosed with bc - had at least one round of chemo and maybe two (can't remember) plus radiation.  We buried her three years later.  She was only 54 and my husband was 28. The thought of having to leave my family while they're still young weighs very heavily on me.  Maybe I just need to break down and cry.  Have not done that since dx.  Teared up a couple of times, but managed to get control before a full blown out bawling session broke out.  Tell me what to do.

     

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Hi Sherry and Cheyenne,

    I don't think anybody can really tell you what to do each one of us has to go through her own process. I just sometimes feel that we are being to hard on ourselves wanting to be strong, stay possitive etc.etc. part of that is all the new age psychologies that make us afraid to even feel what we are feeling, there is always this message hanging in the air that we bring to ourselves sickness by having"negative" feelings. Like you Sherry  I have always been the strong one but when I was diagnosed I couldn't stop crying for almost two months, and I think that is was good for me to allow myself grief, be terrified, angry etc. Cheyenne, I'm sure it won't continue like that all the time, luckily there is always more supplies of tissue Smile, I believe crying can be only healing, if it is allowing ourselves to feel what we feel and not judge ourselves for that. Being sick sucks. 

    Anyway...hope that it doesn't sound like preaching just wanted to share some thoughts. Even if I don't ussually write I follow your postings and you are all in my heart.

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  • JFV
    JFV Member Posts: 795
    edited August 2010

    Sherry and Cheyenne-  I am totally in the same emotional and mental boat as the two of you.  Read my pathology report and freaked out was told the same thing as Chey by my oncologist.  Cry alot and have trouble hoping for the best.  Face it our bodies have been hijacked and we can do only so much.  I agree with danielas.  We have a right ot freak out!

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  • TMarina
    TMarina Member Posts: 692
    edited August 2010

    Sherry--sorry you are feeling so down. Frown Like Danielaes said, sometimes we just need to cry.  Its ok what you are feeling, you've been through so much!  Don't be too hard on yourself.  And don't be afraid to get help if you continue to feel down!  Many people going through cancer treatment need a little help to get them through.  But maybe if you just slow down, allow yourself to grieve and cry, you'll be back to your old self soon. :)

    Thinking of you!

    Tina

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  • NorthernGirl
    NorthernGirl Member Posts: 67
    edited August 2010

    My heart goes out to you Cheyenne and Sherry.

    We are with you in our fears and grief. Please find a way to remember that these are our dark days, and someday there will be brighter days. It is so tough, but we can be tougher.

    It's 12 days since my first Docetaxel infusion and I am feeling well. So, instead of being happy, I am getting freaked that in just over a week, it will be time for the next infusion. I am terrified to go through the same experience of terrible pain. I had a good cry. The upside: I got great hugs from hubby. The downside: I gave myself a nice headache.

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited August 2010

    cheyenne-I am SO sorry that you are so anxious.  Did your therapist re evaluate your anxiety/depression meds? Is your Onc in charge of your depression meds?  I would have thought that your therapist, in consultation with your Onc would tweek those.  Okay, let's talk about your Onc saying that if the cancer comes back it will be Stage IV. WHY would she be discussing this with you right now?  And I don't think that is a fact!! Stage IV means that this particular cancer has traveled to other organs, doesn't it?  There are so many scenarios that do NOT mean Stage IV.  Dang these doctors!  They don't know what your future will bring.    NONE of us do!  Just know that in this moment, you are doing everything possible to beat this cancer once and for all.  Statistically, your chances of NOT having a recurrence are fabulous.  Grab on to the positive, Cheyenne.  Try not to start doubting that this is working.  Prayers going up for you tonight.

    sherry- Maybe it's too soon for you to work this much?  I know how you feel, wanting to not be around so many 'normal" people. Sometimes I feel like I am in a time warp.  Everyone is just getting on with their busy, happy lives and here I am in limbo.   When I am out in NYC, I often feel like I am running back home to get away from them.  I think it is not just about getting through the brutal medical treatments, you need time to reconcile ALL that has happened to you physically and mentally.  If that means staying in your safe home, quiet, surrounded by those who know and love you most, there is nothing wrong with that.  Know you are beating this cancer beast and hold onto that!  Prayers going up for you too!

    JFV-  I totally agree about crying. I don't know why, but sometimes it is totally therapeutic and just seems to "reset" things.

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  • toni30
    toni30 Member Posts: 252
    edited August 2010

    Hi Ladies:

    Getting my second (dose dense) Taxol tomorrow. Just took 5 steroid pills.  Working Mom- I hope you had an okay experience today -l et us know. My onc also pooh-poohed the ice thing for the nails, and I trust her - so far (after 2 weeks) my nails seem okay.  The Benadryl hurt a little going in, and I hated how sleepy it made me - I'm going to see if I can get them to cut down on the dose tomorrow. My tongue tasted funny for a few days but it wore off, and my appetitie and energy are way better than the AC.  I only had to take one day off from work (although I took an extra one, just becasue I have lots of sick days available). Ladies- do what you need to to get sleep - Xanax, Restoril or Ambien - you cannot get through this unless you get lots of sleep. Hugs to all, Toni

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  • Latte
    Latte Member Posts: 1,072
    edited August 2010
    Cheyenne and anyone else who is suffering emotionally and having trouble dealing with this - this group is a great support group, but it's not the same as face-to-face support. I don't know if it is available where you live, but where i live there are organizations that pair you up with someone who has been through what we are going through and survived. I got paired up with a "cancer buddy" who went through chemo, surgery, rads, hormone tx, and is now five years out. she is a great help to me when i am down or wondering how i will get through this. I recommend trying to find face-to-face support from someone who knows what we are going through, in addition to this wonderful online group.
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  • workmother
    workmother Member Posts: 78
    edited August 2010

    Hi everyone. Well I made it through my first dose dense Taxol yesterday. What a long day! Had my onc. appt at 10:30am and didn't get out of that place until 4:30PM!

    As for the actual treatment I had no steroids the night or morning before prescribed. They gave me Decadron in the IV and Benadryl and something I can't remember the name of to prevent allergic reactions and then the Taxol. I had the worst reaction to the Benadryl! My arm turned ice cold and I had horrible pains going through it. They gave me a hot pack to put on my hand near my IV and a warm blanket to put over my arm. I got tingly all over my body and light headed. I hate that feeling. It lasted about 5 minutes and then stopped. I was so freaked I might have a bad reaction to the Taxol. My nurse was great. She said if I did have a reaction it would be within the first 10 minutes of the Taxol and she sat with me and literally watched me for those for 10 minutes. She talked with me and kept me calm. Unfortunately the nurse I call Nurse Rachett came by and asked what was going on (this is the same nurse that was horrible during my first tx by telling me she was doing the same treatments as me and how awful it has been for her!!). When my nurse told her about my fears so informed me that she had a bad reaction to Taxol, not during infusion but 2 days later and had to switch to Taxotere. My nurse told her we needed positive reinforcement. My husband almost got up to strangle her! He told her we didn't want to hear ANY bad stories so please stop it right now. She just walked away. I am going to officially complain about her. She should NOT be working there and telling negative things to patients! Anyway, MY Taxol went fine and I'm sure it will continue that way.

    So far I had a big bout of the runs last night. And I was up until 4:30AM wide awake. Not sure if it was the Decadron in the IV. I've only had it in pills during AC and had Emend in the IV. maybe its stronger? I only slept 4 hours and got up. Feeling pretty awake still. Maybe I'll crash later?

    I have an arsenal of things to take today to prevent/help side effects. I'll be putting the Tea Tree oil on my nails, will take Glutamine and B6 for muscle and bone pains. My onc gave me the go ahead on them yesterday when I asked. He said they used to tell all Taxol patients to take that but stopped because it doesn't work! I'm trying it anyway because lots of ladies on this site had good results. Also will continue to take the Claratin for the next couple of days. Taking Ginseng for energy. Pearls probiotic for the tummy and I have my back up Zofran for nausea.. It helps me feel more in control I think!

    Thanks for all the positive thoughts. And I hope that all of you starting Taxol do well! I'll be thinking of you!! : )   Donna

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  • workmother
    workmother Member Posts: 78
    edited August 2010

    JFV - I go to Sloan in Commack. I went to LIJ for my second opinion about chemo. How dod your Taxol go yesterday? Its your second right? Did you have any side effects from the first? The AC wiped me out each time for 3-4 days. Hoping Taxol is easier on me!

    Designermom - yes, you are right. it wasn't as bad as i thought. I definitely had the same fears as the first time!

    Kittycat - its strange how your onc gave you the go ahead on the ice for your fingers and toes and mine didn't. You wonder sometimes how doctors have such different opinions in the same field!

    I also would like to thank the person who posted You don't have to brave. You just have to show up. I also have used that to get myself to my chemo sessions. It is soooo true! And I have a friend that went through breast cancer, bilateral mastectomy, chemo and rads last year that has been very helpful with her thoughts. The best thing I took from her was to Live In This Day. She said she knows its hard to do but you need to try. Because thats all really that ANYONE has, is this day we are in. So when I start worrying about the future and freaking myself out I try to stop and enjoy the day I am in. Of course sometimes it doesn't work and I just cry my eyes out. That helps too! -Donna

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  • grneyd5600
    grneyd5600 Member Posts: 420
    edited August 2010

    Donna

    glad to hear you made out ok.  Hopefully you will feel even better today.  I am so sorry that Nurse Rachett was around.  Your husband is my hero!  Way to send her on her way.  I have been blessed with phenominal Onc nurses.  I made out well with my first Taxol.  The Benadryl put me to sleep but otherwise I was ok.  I am going to take some of the "hot hands" packs with me next week because I do get cold hands especially on the IV side during the Taxol. 

    Hang in there my friends!  Remember we are all on this ride together and we CAN DO IT!!! 

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited August 2010

    workmother- Hooray!  You sound positive and determined....in spite of sleep deprivation and Nurse Ratchett.  Jeez!  What is the matter with people?  If she is in treatment she should know better than detailing HER bad SE.  If she is a nurse, she certainly should know better, or work in a different nursing area.  Good for DH to tell her to go away!  I bet it made him feel a little more in control too!  Rest and drink your fluids today.  Remember, your body is still stressed from chemo, even if you are feeling "okay".

    latte- I think that is great advice to find a "cancer buddy" for support.  I also saw a 24 hour support phone line on some thread.  It is staffed by BC survivors and anyone can call any time to talk and get support.  If I find it I will post.

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  • Latte
    Latte Member Posts: 1,072
    edited August 2010
    workmother - glad to hear you made it through the first taxol. i am on weekly taxol and i don't manage to sleep at all the night after a tx because of the steroids. this never happened to me with AC, so maybe the steroid dosage is higher with taxol, i don't know. I did ask the onc nurses if there is anything i can do about it and they said no :-(
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  • mitymuffin
    mitymuffin Member Posts: 337
    edited August 2010

    Workmother, my doctor also gives Benedryl and Decadron in the IV before the chemo. The first time it scared me to death because I wasn't expecting the dizziness etc from the Benedryl. Since then, I've negotiated with the doctor and gotten both the Benedryl and Decadron as low as the doctor is willing to go. For the next two nights after the chemo, I take Ambien so I can sleep. By the third night I can sleep naturally.  

    Mostly I've felt fine during my first four Taxols, but I am feeling low and fatigued today. I'm in the Avastin/plecebo clinical trial and I may have gotten the Avastin this week. 

    I hope you do well with the Taxol.

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited August 2010

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

    I just read this on another thread, thought it was fitting.  It sure is great riding with all you ladies!

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