Starting Chemo in June 2005

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  • Analemma
    Analemma Member Posts: 1,622
    edited August 2005
    Saleboat, I don't like the benadryl, either! I just hate the narcotic, out-of-it feeling! I'm going to see if they can't lighten the dose, since I didn't have any allergic reactions.

    Decadron - I'm taking it 2 pills 2x a day the day before, 2 pills the morning of, and then 1/2 pill twice the next day. Only I misread the instrutions and only took one pill instead of two the day before and day of. I was told to take it at 8 and 2, so it wouldn't keep me up at night. I think it still made me not rest well, but not as bad as if I had taken it in the late afternoon. It was also in the infusion, which ended at 5, so between the decadron and the benadryl fighting a battle, I really felt loopy - didn't like it one bit!

    All during AC food tasted moderately ok, but now with taxol, nothing has any flavor. We ate pizza last night and it tasted like cardboard - I put anchovies on it and still felt like it needed salt. Today I've got a hankering for fried chicken and biscuits (yes, I'm a relocated southern girl) so I hope they will taste ok. I've been drinking a lot of Coke, and before last week, I hadn't had a pop of any kind in probably 5 years. Now, it tastes really good!

    Is anyone taking anything to boost hemoglobin? What are your counts? I feel like a limp dishrag!
  • 2frogs1princess
    2frogs1princess Member Posts: 120
    edited August 2005
    Hi all. Hope your Saturdays are going well. I'm feeling pretty good being as I haven't been given chemo for three weeks now. Hopefully Thursday will be Taxol #1 for me with herceptin. I just got back from my oldest's football game. So cute to watch 4-5-6 year olds play. He will be 5 this coming Wednesday.
    Liz-I give myself my own shots because I'm a nurse and really it's no different than people who have to give themselves insulin, except our shots burn like you know what. Plus I'm an hour away from my treatment center.
    Jen- thanks for the encouragement and input about Carbaplatin. I'll be sure to ask. And also, my baby ended up having an ear infection. I have to be away from him until he is fever free for two days. So, just a little withdrawl, but at the same time a little break from hearing mama, mama, mama, mama, over and over........
    Brenda-My hemoglobin kept dropping with the A/C so my onc started me on Aranesp. It's an injection just like the Neulasta, it just targets red cells instead of white. Also, I've not had any problems with taste either, just no appetite. So, we'll see after Thursday what happens.

    Have a great Sunday all!!!

    ~Mindy~
  • Scout
    Scout Member Posts: 76
    edited August 2005
    Hey, Folks! I haven't been on for awhile. The last chemo really hit me hard and I had alot more nausea and fatigue than I thought I would.....it felt weird...like my body was dying but my mind was still going fast. I slept alot, which helped some. Did anyone else get CEF? Boy, that last one was hard! But....it's over! Yea!
    I start Taxotere on the 25th too. I have to take Decadron the day before, and the day after. What side effects does this have?
    My Onc. thinks that I should stop reading on the internet because only "people with problems" are posting here, and that there are tons of people who don't have these problems....well....I'm not going to stop coming here!
    She stated that the Taxotere does not have any side effects and that I should be fine.
    Anyone else have headaches? I have had one for several days now and can't get rid of it!
    Anywho....just wanted everyone to know that i AM alive and back from the living dead. My antidepressant seems to be working and I don't feel as much panic as I had before. We will see how it works when I have to have tests to see if this massive tumor has shrunk!
  • JoMac
    JoMac Member Posts: 192
    edited August 2005
    My eyes have been wacky since I began this chemo journey. the latest on Taxol is that my eyelashes seem to be diintegrating. so this causes me to blink alot. I also feel like the insides of my eyelids are sticky.
    I can read and watch T.V. I just blink frequently. I couldn't even do that on the AC.
    I feel run down today but not too achy.
    I sure did feel great two days ago. It is hard to fall to quickly.
    It is hot and that doesn't help either.
    So hopefully today will pass and tomorrow could be better.
  • LizFL
    LizFL Member Posts: 377
    edited August 2005
    Scout..so sorry to hear you are having such a rough time..that makes 3 of us now starting the T the same day.



    Mindy, as a nurse it's just routine to you...and makes sense not to have to drive 2 hours r/t. I would have a problem injecting myself! Guess I would have to learn if it were necessary...I don't mind needles much, just can't watch!



    Jo...glad things are a little better today.



    At least by the time those of us going on to rads after we finish chemo it will be late fall, and we should have cooler weather.



    Liz
  • rmmom
    rmmom Member Posts: 168
    edited August 2005
    Hi
    I thought I would be out of the ocean and walking on the beach by now but I guess it takes longer than a week to get this stuff out of your system. Did anyone have withdraw after A/C-I was so grumpy I didn't want to be near me-It may have been the swish and swallow too-I started using it only at night just in case and wasn't as moody.
    Brenda-you can drink coke It makes me so sick.
    Fi-I understand the staring bit. I had to do some college shopping today and it is the the men! I want to shake them all
    I am worried about Taxol. I keep reading how well all of you are doing but still I am chicken I was always the brave one at home now that I am out of the study I feel like a wimp, even though my hands are still full of blisters and I don't have the energy back yet
    Oh Brenda-ask if you can take iron to get your levels up. I have to take TWO a day and a mult-vitamin and Procit (I have chronic anemia problem)....maybe doc and trial nurse should look into that instead of leaving feeling like I did something wrong by not continuing on rest of my A/C treatments.

    LOOKING FORWARD TO WALKING ON REAL BEACH WHEN THIS IS DONE!!!
    Bev
  • NancyM
    NancyM Member Posts: 289
    edited August 2005
    Bev, when you said about walking on the beach it made me think of my mom's auntie who would say "let's swing the beach and see if they pulled the plug!"

    Soon they will have pulled the plug on our little ocean and we'll always have lots of beach to walk upon!
  • minerva
    minerva Member Posts: 36
    edited August 2005

    I am ready to empty this ocean. I keep wondering when I will have some energy back. The Taxol wasn't too bad but this FEC is kicking my .... I am on a 3 week cycle so maybe next week will be better.

  • saleboat
    saleboat Member Posts: 71
    edited August 2005
    Pam-- congrats on your son't admission to Julliard! He must be very talented.

    As for being on chemo in NYC-- I do everything I did before (ride the subway, bus, eat out), but always take a few extra precautions-- I travel with Purell, wash my hands like I have OCD, and never eat salad unless I've made it myself. I too thought the subway would be off limits, but when I asked the chemo nurse, she kind of laughed at me. I guess our immune systems are stronger than we think! That said, my blood counts seem to bounce back, which may not be true of everyone. I think that Sloan really wants us to feel as 'normal' as possible, and won't put any undue restrictions on how we live our lives, which I appreciate. As my chemo nurse said about the subway "just don't lick the pole" Ha!

    My father-in-law, 70 y.o. also did chemo in NYC-- he did all the regular NYC things too-- even gave a concert or two (he's a jazz pianist).

    The only thing that is hard is the heat-- it is HOT here!!! That said, I'm still doing the subway, etc.

    So-- good luck with your decision! I can completely understand not wanting to travel during chemo, but as for the germs, my father-in-law and I are still kickin'.

    Jen
  • cnmpam
    cnmpam Member Posts: 15
    edited August 2005
    Thanks Jen, I got up this am early just to see if you repkied! I use Purell now so I just be sure to big a bigger bottle in my purse. MD anderson does not restrict us much either...they say the germs to worry about the most are our own...which when I got neutropenic fever it was from my own mouth sores. So anyway, I am so excited about your email and I will come to NYC during this journey. I will let you know when I am gonna come and maybe we can meet and not lick poles together! One more question...if in the city for a few days and if I had any complications which hospital would I go to? Which is better for chemo pts to "show up" at (besides Bellvue LOL)?
    Pam
  • Analemma
    Analemma Member Posts: 1,622
    edited August 2005
    Liz, I don't have a medical background, and I give myself the shots. It's a piece of cake - and much better than going back in to the hospital. Also, since it delivered by home health care, it's paid at 100%, but if I went back in, it would be yet another $15 copay.

    Speaking of that - I have to pay two copays when I go in for chemo - one for the dr. appt, and one for the infusion. Do the rest of you have to pay both? And every time I do, I think, "Man, I'm glad I have insurance!"
  • LizFL
    LizFL Member Posts: 377
    edited August 2005
    My insurance has a $1,500 maximum out of pocket per year. The copays for biopsies were $250 each and $500 for my mastectomy (because I stayed overnight...otherwise would have been $250), so I hit my max pretty quickly. I have a $15 copay for Primary Care Doctor and $25 for specialists and tests. No copay for blood work done for pre-op, etc. I have only paid the oncologist $50 to date, because after that I hit my max. I probably will have a copay of $25 for the chemo clinic when my new insurance year starts in October, but it looks like they bill the shot as part of the chemo treatment. I looked up my insurance payments on their website and so far they have been billed over $98,000! This includes a few other things than the BC treatment, but not a lot. They have paid out about $28,000. The Neulasta shots are paid at over $2,800!!!



    Liz
  • Pepe1
    Pepe1 Member Posts: 3
    edited August 2005
    Well, here I go again. I just typed something and lost it all. oh well...(chemo brain?). Yes, my hemoglobin is low too, 10.9 and they're giving me Arenesp shots. I was told this was to try to prevent having blood transfusions. Great! Just one more thing to worry about. Also, my doc told me to travel on my "good" weeks, so I'm leaving to go visit my kids in Florida. I asked about wearing a mask on the plane and he laughed at me. He said the only way it would help, was to ask everyone who was sick to put the mask on. My daughter works at a hospital and she's bringing me one to wear anyway. I thought the recirculating air wasn't supposed to be good to breathe right now?!
    As far as the co-pay....I only have to pay ONE co-pay and that's only if I see the doctor or the P.A. So I don't know why you have to pay both, but I definitely agree that it's a good thing we have insurance. When I see that they're charging almost $5,000 a shot, I wonder how some people can do it.
  • nosurrender
    nosurrender Member Posts: 2,019
    edited August 2005
    hello junesterettes
    i am just stopping by to say hi
    i have had power problems here due to a tornado on fri night- yes! on long island- a tornado!

    for those with eye problems it sounds like the dry eye decadron is famous for...i have a great eye drop called gentear- i think it is rx- my eye doctor gave me samples- just two times a day and i have normal eyes again!

    i am diggin you girls using your purell!

    as for the subway or plane...did you know that if you breathe through your nose only you filter germs better than if you breathe through your mouth? or maybe someone just told mr that because they thought i had bad breath!
  • NancyM
    NancyM Member Posts: 289
    edited August 2005
    I ask all of you to take a moment of silence today and think of me as I mourn the loss of my eyebrows.

    Yet, do not shed any tears for me, for I my eyebrows will rise again, stronger and longer in the days to come.

    In the meantime, I intend to join in the fight for eyebrow recognition...eyelashes have been in the limelight far too long! Down with having hundreds of types of mascara to choose from when they crowd out the selection of eyebrow pencils! Where is the justice??

    Now, if only my nose hairs would fall out!
  • Analemma
    Analemma Member Posts: 1,622
    edited August 2005
    Finally I feel like getting some studio work in today. sunday is my normal housecleaning day, and I didn't do doodly-squat!

    someone told me that Taxol isn't as hard on the counts as AC. Has anybody heard that? I just hope my hemoglobin doesn't drop like it did last AC.

    I'm getting into the busy end of the season art show time. I have a show this weekend and the following, then skip Labor Day and shows the following two weekends after that. Then nothing for October and November (I didn't schedule anything during rads because of fear of the unknown), then big shows the first and second weekend of December. It's a hard way to make money, especially trying to work around treatments and side effect misery. I'm kind of worried about the shows on the weekends after Monday Taxol, this first one kicked my ass!

    Michelle has her last AC today. Michelle, are you doing T next? Let me know the rest of your schedule.

    I still need schedules from some of you, if you want to be on the calendar.

    Nancy, where are you in treatment? My brows also started thinning over the weekend. Oh, the indignity!
  • JoMac
    JoMac Member Posts: 192
    edited August 2005
    Feeling a surge of optimism so I bought myself new paint brushes today.
    My old ones won't hold a point anymore. That along with the blurry eye syndrome is making it harder and harder to paint well.
  • RebeccaH
    RebeccaH Member Posts: 72
    edited August 2005
    I have finally started feeling better...been thinking chemo really sucks. Even my husband had to remind me that chemo is killing things and it's not supposed to be easy.

    My onc gave me a prescription for decadron...and I'm a little worried... he said to take 5 the night before and 5 the morning of treatment. Does this sound like overkill and a recipe for the really late night movies? Plus, I get 'ants in the pants' in the iv.

    You know how it's a small world afterall? My husband is in the Air Force. He attended maintenance school in Illinois, and there was only one married couple there. Their son was abou 9 months younger than my daughter. Over the years, we lost track of them. When we moved to UT, we found out they were stationed here, too. Our lives are very different now, and we haven't done anything socially. Come to find out, our kids had PE together. Then, when I was waiting on my Nuelasta shot, she comes out of the onc office. Come to find out, she's going to be working 4 days giving chemo treatments...and they're on MY days! She decided to add a few more hours to her schedule, plus, they needed someone to fill in for some vacation time. Kinda makes me excited...who would have know where the AF would have led us, muchless who'd cross our ways again!

    Does anyone else think Zofran is the absolute worse tasting thing on the face of the earth? I better not have nausea on taxol...I don't think I can take anymore of the zofran. Last night it made me gag.

    BrendaF...taxol will start 8/23...and every two weeks. Last one is Oct 4th. Can you add it to the calendar?

    Looking forward to heading to Jackson Hole this weekend. Looking forward to cooler weather...and something else to occupy mind other than chemo.
  • Watson
    Watson Member Posts: 1,490
    edited August 2005
    Nancy,
    You made me laugh! I think my eyebrows are vacating the premesis as well. At least the darker ones.

    As I read your post, I pictured Eva Peron (Evita) singing Don't Cry for me Argentina! Then it kind of switched over to Scarlett O"Hara clutching the dirt from her Tara. (okay, I guess I watch way too much Turner Classics)

    Anyhoo, I will valiantly stand shoulder to shoulder, breast to breast (oops, maybe not now! ) for eyebrow loss recognition!

    Ta Ta,
  • RebeccaH
    RebeccaH Member Posts: 72
    edited August 2005

    Oh, forgot to tell you. My husband and I had to put our cat of 14 years to sleep on Saturday. It really sucked. It was really hard on the chemo body...felt SO nauseated through the whole ordeal. Then, we had to tell our daughter who is visiting her grandmother. A totally wasted day emotionally...

  • minerva
    minerva Member Posts: 36
    edited August 2005
    Susan - I asked my mother the other day if she could help me paint on some eyebrows! Mine have always been thick and it is weird to see them this way. If we get to meet we can check each others paint jobs.

    Rebecca - enjoy your time in Jackson Hole. We moved from there last year and sure miss it. My husband grew up there but received a job he couldn't turn down, so now we live in Rock Springs. It is a small world, it is a blessing when we find people from our past. Enjoy!

    Brenda - I would like to be added to the schedule. I will be having treatment #2 of 4 of FEC on August 29. Number 3 will be Sept.19th and 4 on Oct. 10. I will have the mast following that but don't have a date yet. Thanks
  • nosurrender
    nosurrender Member Posts: 2,019
    edited August 2005
    Re: Eyebrows
    Girls- use a powder- find an eye shadow that is a shade or two lighter than your old brows. Then- get a brush- very fine brush!- moisten tip and very lightly- VERY LIGHTLY- draw tiny little hairs- meaning don't go in one straight line use a dashing motion.
    A light touch- A light Shade- and a Light line of tiny "hairs" will give you the most natural look ---

    BEWARE THE PENCIL! BEWARE THE LIQUID BROW LINER!
    Groucho Marx and Leonid Breshnev have cornered that market.
  • Analemma
    Analemma Member Posts: 1,622
    edited August 2005

    Rebecca - I had to take four decadron the day before chemo, but I was told to take 2 at 8 am and 2 more no later than 2 pm, so I could sleep. Then I just took 2 the morning of chemo, since infusion was scheduled for noon. I certainly wouldn't take them at night - you won't sleep a wink!

  • JoMac
    JoMac Member Posts: 192
    edited August 2005
    Just went out and got the eyebrow powder. My eyes are really blurry today.
    I have been getting huge hot flashes. I sit around with my little cap on with an ice pack on top of that.
    Quite the look.
    My head feels like a chimney.
    Anyone else having the flashes?
  • LizFL
    LizFL Member Posts: 377
    edited August 2005
    Rebecca...so very sorry to hear about your cat. Certainly having to do that while undergoing chemo is even harder. We have two dogs and I know how attached I am to them.

    Hugs,
    Liz
  • JoMac
    JoMac Member Posts: 192
    edited August 2005

    Rebecca, I too wanted to express sympathy for the loss of your cat. Everything must hit with harder force while going through this difficult time and the comfort of a well loved friend furry or otherwise is even more hurtful now.

  • danahollis
    danahollis Member Posts: 161
    edited August 2005
    Rebecca.... I'm so sorry.

    JoMac... yep... I'm having hot flashes. It's strange how they come on... my head just feels so hot. I wake up at night feeling it. I have them at various times... probably at least a handful each day. I haven't kept track though so it could be more!

    I'm participating in the ACS Ramble & Amble Fundraising event this Friday evening. I decorated a luminaria in honor of us... The Junies! If I can get a picture of it all lit up, I will post it.

    Anyway, Happy Tuesday!
    Hugs to all!
    Dana
  • danahollis
    danahollis Member Posts: 161
    edited August 2005
    Ok...one more thing. I am so achey today. I have a back ache that started yesterday and my neck was sore, too. Ya think that it's the Taxol still? I go tomorrow for Taxol #2. I'm kind of in an emotional rut right now and my mind is plagueing me with some scary thoughts.... I think I need a hug....
  • Analemma
    Analemma Member Posts: 1,622
    edited August 2005

    Re: hot flashes.....Well, I'm 50 so it was time, anyway. But I had been on birth control pills (both for birth control, and to help regulate irregular periods during perimenopause), and even though I'm er- it was recommended I stop them. So, without that bit of estrogen, wow! My head just starts to pour sweat - I can't imagine how it would be if I had hair! At least I'm at home most of the time, and bare-headed. The worst is waking up at night, though. I don't wake up during a hot flash, I wake up just before one begins. Isn't that weird?

  • Taff
    Taff Member Posts: 5
    edited August 2005
    The hot flashes, oh boy! I get them during the night and wake with a wet pillow. Yuk! I'm a July chemo girl but always read this thread too.

    I'm on Taxotere and have had one dose so far. Got my next one tomorrow. I too take Dexamethozone, four tablets twice a day starting the day before chemo and finishing the day after, and hate the 'buzzing like a hornet' feeling I get on these pills.

    Hugs to everyone here,
    Taff

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