Chemo June 2010

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  • RS711
    RS711 Member Posts: 105
    edited June 2010

    Jenweg- You're right, my insurance wouldn't cover the Zofran that my rx was for... they only cover up to a certain # of pills... it's so weird. And on top of it, I wasn't covered for Emend AT ALL. That was the reason why they gave me the sancuso patch, it seemed to work, but it takes 24 hours to kick in. Once it's working, it's good because it's a steady amount of the drug in your system. I'm sure you'll do fine with it.

    I have treatment 2 on thursday and I'm not sure if I'm ready...

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  • akitalover
    akitalover Member Posts: 18
    edited June 2010

    can you tell me what magic mouthwash you are referring to?

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  • akitalover
    akitalover Member Posts: 18
    edited June 2010

    I am starting my first session June 15 and I loved your lint roller idea!! My son is in Paul Mitchell School for Hair here in San Diego and I cannot wait to tell him about the hair product and roller! I just went to a chemo class today and have so much to learn...I appreciate this website and all of the little tidbits everyone has to share. My husband is leaving town after my treatment for one week, so I am kind of scared...I will have people checking in on me but not the same. So thankful for this site. Maybe I will make a new BC buddy at my chemo on Tuesday...

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  • akitalover
    akitalover Member Posts: 18
    edited June 2010

    I feel your pain..My onco test results took Forever...and finally came back "high". So the chemo was ordered as scheduled. I wish you the best of luck. The waiting game is tough, but don't hesitate to call your doctor's office to check to see if the results are in. They are so busy, and it couldn't hurt...hang tuff

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  • jenweg
    jenweg Member Posts: 195
    edited June 2010

    Beanius - I am sorry for your waiting, it is sooo stressful for sure.  I hope you hear Monday and the drain comes out!!

    Sherry - They will give you some meds to start with and then after your first treatment tweek them more to see what will work and what won't.

    mzcapricorn - Welcome to the group, you will learn tons from all of the wonderful girls on this board.  It is a godsend for sure to have it.  It is good that they are moving quick with you, you must have good doctors who care. 

    bon - Good luck with your chemo and read lots on this board, you will learn tons.

    angelwoman - I looked like I had a sunburn after my first treatment, red as can be and my face was actually hot like I had a fever but I didn't.  Very strange indeed.

    Designermom - I hope you are still feeling little to no se's!!

    Brat352 - I understand the yuck feeling ugh.  Make sure you of course drink tons and just sleep as much as possible.  That is about the only thing that helped me!

    RS711 - Glad to hear the patch works well.  Hopefully my insurance will approve it.  Insurance companies are such a pain in the a**!  How do they decide what drug they will cover and what they won't, just crazy.

    akitalover - good luck with your first chemo.  That sucks that your husband will be away but good that you have people to check on you.  My first treatment was rough however many many people don't have any issues so I hope you dont' either.

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  • algreach
    algreach Member Posts: 55
    edited June 2010

    I'm on day 11 post Tx 1 and still feeling fine. I'm walking everyday and still consuming a lot of high fiber foods & water. No sign of hair loss or tingling scalp yet, though my hair is starting to feel like straw. My sister's going to cut my hair once it starts falling--I'm not sure I can trust myself not to cry at the salon.

    Glad to hear most of the latest post-treatment ladies are experiencing few SEs. Hugs to all of you who aren't feeling well.We will get through this. One treatment at a time.

    Best wishes for Roosje and TMarina as you have your first Tx tomorrow. We'll be thinking of you.

    Akitalover--I'm a single mom, so I understand how you feel about your husband being away and being on your own. I kept the phone nearby, just in case, but didn't need to use it. The anticipation was more scary than the days after my treatment. How terrific that your son might be able to help with the hair situation. :-)

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  • lizzyanne
    lizzyanne Member Posts: 73
    edited June 2010

    Hi all - I start my chemo tomorrow - Monday June 14th. Just had my port put in on Friday but apparently they will change the dressing and do the first infusion the same day...I wonder when some of yu say you have to wait until your port heals. I had a mastectomy on the right side and then two weeks later had to have  a lung  resection to rule out cancer in my left lung. That was the worst - I hated that darn chest tube. Two weeks  later the surgery for the port. They are starting to call me by my first name in the surgery center. Anyway...I'm glad I found this group. I am terrified of the side effects of all this. I normally have a squeamish stomach and with my entire chest still hurting from all the surgeries, I can't imagine throwing up for the next few days...But it is time to get this going. 

    AC every 2 weeks for 4 treatments - TH every week for 12 weeks and H every 3 weeks for 14 cycles.

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  • HolliColorado
    HolliColorado Member Posts: 15
    edited June 2010
    Wow, I stay off the computer for a few days and this discussion board blossoms!  I'm sad that more people are having to go through this, but I've found this group provides some of the best information.
     
    @djoellp:  We're in the exact same clinical trial!  I was randomized into the TC group, but I was hoping for TC+Avastin, since the early reports are that it's proving to be effective.  I sincerely hope that, by being in the TC group, I don't contribute to proving that Avastin is highly effective.  Smile  Are you also ER and PR negative?
     
    @kittykat:  I'm also a triple neg, but tested negative on the BRCA1 & 2.  Still, I guess the triple neg grade 3 tumors are basal-like and very similar to what the BRCA 1 people tend to get.  I'm so sorry that you're dealing with all of this again so soon.  I think we're about the same age (40), and my biggest fear is that I'll have to go through all of this again.  Statistics show that triple negs have a higher chance of recurrence within the first three years in comparison to hormonal positive types.  I'm hoping not to be one of those statistics.  I know of at least two Avastin studies that are ongoing.  Maybe you could get into one of them?
     
    I am now 13 days out and feeling so much better.  My hair hasn't started falling out yet, but I had my shoulder length, sandy blond hair cut short yesterday in anticipation.  Problem is, my stylist gave me such a cute haircut that I'm a little sad it may only last a few days or a week.  A couple friends said it was the cutest haircut they'd ever seen on me.  Which makes me wonder ... how many years did they think my longer hair style looked like crap?  Huh.
     
    Anyway, as you can see from my profile photo, I've already been wig shopping.  Every time I tried to buy a serious wig, I couldn't do it and would come home with a crazy red, purple, or lime green one instead.  I finally did purchase a pretty nice synthetic wig that looks scarily like my actual hair (pre-cute short haircut) only better because I don't have to blow dry it.  I figured I'll wear it for court appearances when I go back to work as a lawyer.  Not sure a judge would find my Raggedy Ann red wig as amusing as others have.
     
    I went with the short haircut mostly because I didn't want to deal with huge, tangled chunks of hair falling out in my bed or the tub.  Once it starts going, I'll shave the rest.
     
    I'm actually thinking I'll be wearing more hats than wigs, since it's summer and wigs will be hot.  I've been collecting different kinds and posting pictures on my blog to let people vote on their favorites.  Also, in response to the "let me know if there's anything I can do for you" reactions I've been getting from family and friends, I put out a request on my Facebook "Team Holli" page to have people send me a hat that represents the state they're from.  I'm hoping to collect one from each state.  The first one arrived yesterday from Michigan.  Once my hair grows back, I'll donate the collection to the Cancer Center or another charitable organization willing to take them and pass them along.
     
    One more week until my second treatment on June 22.  The oncos are going to adjust my chemo cocktail to try to find better anti-nausea meds for me this time.  I'm keeping my fingers crossed that it won't be as bad as the first time, which was quite the hangover.
     
    Holli
     
    P.S.  My blog is at http://web.me.com/hollihartman/Hollis_Breast_Cancer_Site/Welcome.html.  Vote on your favorite hat by clicking on "The Mad Hatter." 
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  • RS711
    RS711 Member Posts: 105
    edited June 2010

    lizzyanne- good luck tomorrow, I have the same chemo regimen as you. My port took about a week to heal, but it was ok to be accessed right away. Just in case it is sore, keep the pain meds handy so you're comfortable. 

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  • angelwoman1
    angelwoman1 Member Posts: 27
    edited June 2010

    Danieals-I am getting ac every 2 weeks four times and taxol every 2 weeks 4 times.

    thank you to all your great posts. Had chemo 6/10/10, No steroids today. Back a little sore from Neuastra shot. but walking it off! My hair does tingle a little. Hey I am going to post a picture so you all can see my new short cut. I have never had my hair in 54 years cut that short.

    My sisters and friends walked the komen for the cure yesterday in St Louis yesterday,71,000 people. 2.4 million raised. My onco said i could not go. Maybe next year!

    love all of you and great thanks to you all. You are a fantastic group ever! Love Pam

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

    I got Emend, Compazine and Protonix for my first set of treatments.  Protonix is for acid reflux.  My onco said that she had so many patients complain about acid reflux that she just prescribes it now.  I can take a Multivitamin each day.  Otherwise, no other supplements, especially flaxseen and something else (can't remember).  I feel like I have chemo brain before I even go on chemo!!!

    Wish me luck tomorrow morning on round #2 of the MUGA scan!!! 

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

    Holli - thanks for the info!  I'll ask my onco about the Avastin trial.  She was going to look into trials for me.  I went to Sloan Kettering to get a 3rd opinion.  The only trial for triple negatives they had was for the PARP inhibitors, but that is for people with mets.  They're in the 3rd phase.  Hopefully it will be available to those of us without mets soon. 

    Since I had breast cancer last year, I may not qualify for a clinical trial.  However, my cancer is considered a new primary and not a recurrence.  I had DCIS last year with widely clear margins.  So, this is from tissue cells left behind that formed a new cancer.  It's rare for something like this to happen.    Either way, I'm triple negative, so my cancer did repeat itself within 8 months of my bilateral mastectomy.  Hopefully it doesn't come back again!!!!

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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited June 2010

    dsa - yes I have AC x4 and then Taxol x4.  My pre-meds are different but I understand that can be adjusted after the first treatment, so I'll try not to worry about that.  I'm looking forward to getting started in a way and in another way I have some anxieties about it.  I notice some posters have said they are taking Ativan or something similar prior to going in for their treatment.  I'm going to call on Monday and see if I could do that too.  I'm in Eurieka Springs this weekend for my niece's wedding today.  It's been a nice diversion from the whirlwind I've been on the past 5 weeks.  My thoughts are with all of you today!

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  • Beanius
    Beanius Member Posts: 1,697
    edited June 2010

    Going to chemo class tomorrow...drain in til 6/21 (ugh)...oncotype test results, who knows, as of Friday the don't have the specimen and it takes 10 - 14 days from the time they get the specimen. On the bright side, all surgical wounds are healing.

    My best wishes go out to all of you, have a wonderful Sunday and a fantastic week!

    beach

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

    Still no nausea from my chemo Friday.  HOWEVER!  Let's just talk about constipation!  The Onc nurse told me that the Kytril would cause constipation....she wasn't kidding! I am normally totally regular and follow a pretty healthy diet. I can't even begin to tell you how much fiber I am eating, whole grains, fruit, salad, 3-4 papayas!  No action yet and now I am feeling bloated and uncomfortable.  I don't know whether I can or should take a laxative.  My Onc's one sheet said don't take any without her permission.  Of course it is Sunday and only her service would answer if I called.  Imagine this being my problem from chemo!  Any advice from you guys?

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  • dsa-deb
    dsa-deb Member Posts: 126
    edited June 2010

    Hey DesignerMom:

    my Onc nurse told me that if i needed something to do the job pronto, to take milk of magnesia...she said it's the 'get the job done now'  use of choice by their experience.  and, senokot-L is a stool softener that she also recommended.

    i imagine your onc team has a rotating dr/nurse on call each weekend (mind does), so i bet if you went ahead and called, someone would get back w/you, especially if u told them the situation.  afterall, what do you have to loose at this point--

    good luck!! 

    dsa     deb

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  • Beanius
    Beanius Member Posts: 1,697
    edited June 2010

    DesignerMom - Maybe a lot of water and a cup of coffee? Other ideas: prunes, dried apricots, metamucil. Keep drinking a lot of water. I so hope this clears up soon. Best of luck to you!

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  • julia2
    julia2 Member Posts: 183
    edited June 2010

    Making my chemo shopping list and getting ready to head to Walmart.  Bought a wig yesterday.  Doing something constructive helps me not dwell on being scared to death:-).  It was fun, took my best GF with me.  Talked to the parental units this am, they will be coming over from Europe for a couple weeks during my treatment.  Not sure if that will raise or lower my stress:-)  My mother is fab, she 'gets it'.  My father, not so much, I think he's in denial about my situation.  I find myself saying things on the phone I hadn't planned to, that probably scare my mum to death, in an attempt to get through to my dad about the seriousness of all this, sigh.

    Julia

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

    Julia,

    Kuddos for the courage. My mom came for the surgery and she drove me totally NUTS!! now all my energy is dedicated to try to keep her away for my chemoSealed

    Hope it goes better for you Smile 

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  • DiDel
    DiDel Member Posts: 1,329
    edited June 2010

    Hello everyone! Good luck with your upcoming treatments. I just completed 4 rounds of TC a few weeks ago and the fatigue has finally left.

    HolliColorado: Love the wig!! I got a purple one to represent for my Baltimore Ravens

    RS711: My insurance didn't cover the first rx for Emend either..$410 for 4 pills!! They also only allowed me to get 2 doses at a time (2 pills per treatment had to wait 30 days to fill the rest of the rx) Good news is they covered it for the remaining pills! I also got Aloxi IV day of tx. Zofran never worked for me and also wasn't covered by ins. I used compazine which worked well, I had days of nausea but never vomitted thank GOD

    akitalover: Magic Mouth is a concoction (sp?)of rx mouth rinses your onc or dentist can prescribe. I rinsed several times a day (esp after meals) with Baking Soda, Salt and water and used Biotene dry mouth rinse and sensodyne (no alcohol contained) toothpaste 3 times a day NEVER got mouth sores.

    Designermom: I agree with dsa, I used Senokot daily the week of treatment. That and aleve in the first week were the only things I could use before day 7 without dr. permission. I got aches by day 5 as predicted by the docs felt like bad flu. I was told Aleve was ok to take and worked great.

    Chemocare.org is also a great source to use for chemo related questions and what to expect during treatment. Best wishes to all beginning or continuing treatments this week!!

    Diane

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  • TMarina
    TMarina Member Posts: 692
    edited June 2010

    Hi Lizzyanne!  I also start chemo tomorrow and am on the exact same regimen as you!  Roosje's is very similar to ours too.  I've been so busy lately that I haven't had much time to think about chemo, which is a good thing.  I am going to take an Ativan before I go, because I've come to associate the chemo chair with nausea from going through chemo last year (for colon cancer).  I was given Ativan last year to help with nausea, but it also is an anti-anxiety pill!

    Sounds like you've been busy!  Let's hope you can stay out of the OR for awhile!

    Keep crackers handy, and don't let your tummy get hungry--nausea is worse then.  I keep applesauce cups on hand to eat in the am before I even get out of bed so I can take my pills right away (don't like to take pills on an empty stomach!).  I assume you've been told to drink lots of liquids?  And that you'll be peeing red for a few days?  Let you onc or the onc nurses know about any bad se's you have--they can help with almost anything.

    I'm hoping and praying we won't have any of the bad side effects!  I'll be thinking of you and Roosje tomorrow and hoping to hear from you both soon after!

    Take care!

    T

    ps here's my blog address:  under-the-oaks.blogspot.com

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

    Thanks Didel, Beanius and all you other cheerleaders.  With your prodding, I did go ahead and call my doctor's service.  The very nice on-call doctor agreed that 3 days was way too long.  He gave me permission to take the Colace and Senna -S.  Whoo Hooo!  Why is it that we are so hesitant to bother doctors?  They sure have bothered me over these past months!!

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  • mimi9186
    mimi9186 Member Posts: 127
    edited June 2010

    It is day 3 after my first trmt.  It has not been too bad except the dexamethsone makes me so hyper and irritable, I will stop taking it.

    Lizzyanne, my heart goes out to you.  My port was put in Monday and they did chemo on Friday.  You will be surprized by how quickly it heals.  I hope and pray the very best for you tomorrow.  You will wish you had the port put in first, before all these tests and surgeries.  It would have made life easier.

    I used Senna S the day before the trmt. and cleaned out.  I wish I would have continued to use it every day so I would not be in the situation I am in now.

    Love and hugs,  Mimi

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  • batoday
    batoday Member Posts: 27
    edited June 2010

    Hello ladies,

    I am starting my chemo on Jun 15th.  ACx4 biweekly & Taxolx4 biweekly. 

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  • TMarina
    TMarina Member Posts: 692
    edited June 2010

    Designermom--hope that works for you!  That reminds me I better take a sennekot tonight!  I'll also be drinking citrucel daily, I'm supposed to anyway becasue it helps with "issues" I have from my colon surgery.

    I also have a colace prescription (not sure if that's diff. from otc?) that my bs gave me after surgery.

    Just want to put this out there about steroids--My scrip last time said to take them the first 3 days after treatment with the Zofran (also got some with my infusion).  Because I still had nausea after the 3 days, I kept taking them.  BAD IDEA!  I did not realize at the time how wired they would make me, and I had many sleepless nights, then crashed.  My doc explained them a little better to me after that (I hadn't noticed the 3 day thing, and nobody mentioned it), but he did tell me I could take them after the 3 days, if needed, but only in the morning, and not too often.  The Zofran I could take as needed.

    The good thing about steroids is that I didn't have any allergy trouble the whole time I was on them, or rheumatoid arthritis pain!  Something to look forward to I guess!

    Take care,

    T

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  • dsa-deb
    dsa-deb Member Posts: 126
    edited June 2010

    designermom:  so glad you called & got some advice--i forgot that the colace was an option, too--should have mentioned it.  my bad.  however, i've not been told about sennakot---so, i'll ask next week when i go in.  hope u get the much needed relief soon!

    deb

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  • PennStater
    PennStater Member Posts: 10
    edited June 2010

    Welcome to all the new members, joining this "club" sucks, but it is great knowing there are so many women going through this with me (and that there are tons of survivors who have beaten this!)

    Concerning the anxiety of starting chemo, just try to relax, certainly you would be crazy if you weren't nervous about SE's, but just see what happens.  I hope I'm not shooting myself in the foot here, but I just had the IV premeds, dexamethasone and Emend and side effects were minimal after AC#1.  I had compazine and zofran if needed, but never had to take any. I was more relaxed the weekend after my first chemo than I had been in a long time

    Ativan has also worked great for me.  I was prescribed some after I nearly had a meltdown in the MRI (face down for 45 mins!) and was told I could take it before bed to help me sleep or the morning of procedures (MUGA, PET, port placement).  It takes the edge off just a little for me.  As one of my nurses put it, you don't get any gold stars for going through this with minimal meds.  Ask for and use whatever meds you need to be comfortable (mentally and physically).    

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  • swanseagirl
    swanseagirl Member Posts: 393
    edited June 2010

    Hi all,

    Have been searching for a site that will tell me what to buy for my chemo care package.  Any advise or can you tell me where the link is?

    Many thanks & Hugs oxoxo

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  • ishobie
    ishobie Member Posts: 96
    edited June 2010

    Isabel -started June 9thTCH, once every three weeks for 6 treatments, then 9 months of herceptin

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  • Bugs
    Bugs Member Posts: 1,719
    edited June 2010

    Excuse my intrusion, ladies.  

    T, I just wanted to pop on here and wish you well for tomorrow.  You know you'll be in my thoughts and prayers.  Make sure they don't push the cytoxin too fast...it can cause bad headaches if pushed too fast.  Call me when you are feeling up to it.

    Bugs

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