The Chemosabe March Cruise
Comments
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hello girls
I just got home from the hospital. Feels like forever since I was home. I got very sick with an infection and had a extremely bad reaction to the first tx of toxatere. My white cell cound went to 0 so they had me on antibiotics. Seemed to take forever for my white cell count to go up. As you might remember we Canaidians do not get the white cell booster shots. So tired, but just wanted you all to know that is where I have been all this time. Hospitals suck I had two roommates that were both dying from cancer and one will most likely die today. I am so depressed and just hate cancer and what it is doing to so many fine people that don't deserve it.
Melissa -
Is anyone tired of this cruise yet? I am so tired of cancer that sometimes I can't even see straight. I just have to keep telling myself that the light at the end of the tunnel is not a train. God is walking, pulling, pushing, carrying us through this battle. WE WILL PREVAIL!!!!!!!!
I have my TAC #5 in a week (6/13). I will have my last one the week of July 4th. Talk about independence day!!
My plastic surgeon told me today that we need to accelerate my expander fills to make sure I get done before radiation starts. Now I have to get serious about what size I want my new boobs to be. One more decision to make. I guess I should be happy that I get any choices in this whole thing.
I have not been posting much but I have read each and every post and I want to let everyone know that I am prayin for you all - for no side effects, for good health, for happiness, for peace. -
heck, yeah, i'm tired of this stuff. tired of being tired, tired of being in pain, tired of not feeling good.
i know i only have a few more weeks to go, but man, i want to feel good again. -
Updated Bar Reservations June 4 - 8
Monday: Nana45 (last one....Hip hip Hooray!!!}
Tuesday: Bettye (#1 FEC), GrammyNancy (#5)
Wednesday: Angel (#5), LisaSDCA (#5)
Thursady:
Friday:
Smooth sailing! -
Holly, it is so good to hear from you. I am so sorry that your cruise has been such a tough one. How long did you stay in the hospital? I think MissShapen had some good suggestions that might help with your financial concerns. Do try to find some positives on a daily basis .if it is only observing a flower or watching a bird. I pray daily of all of us and know that God will see us through this journey.
Lisa yes Im so happy to have #5 done..that makes me 5/6th of the way done but you are right behind me. My MUGA test came back okay so will continue on schedule. Last treatment will be June 26. It is kind of funny for some reason I dreaded going today I think it might have to do with just being tried of this whole thing like Patti said. Once I was there it was okay. I sure hope and pray your headache goes away soon, sorry the onc didnt have a magic wand.
Melissa sorry to hear you ended up in the hospital your post sounds as if you were there a long time .how long? Where you there because of your counts or did you pick up some bug? That must have been so very hard to be roommates with people that were not doing well. I know you are happy to be home .pamper yourself. Prayers and hugs being sent your way.
Patti .you are so right .I m tired of this cruise .Im tried of being bald . And when I look at my calendar a see that my last chemo will be June 26th, I cant even rejoice because Im HER2 positive so will continue that treatment for 1 year and will be on AIs for at least 5 years as Im er+, pr+. Good luck on picking out some nice perky boobs.
Bettye Hoping that your FEC went well today let us hear from you when you feel up to it.
Prayers for smooth sailing for Angel and Lisa tomorrow as you step up to the bar. -
Hello, everyone - It's been awhile since I have posted, because #4 of A/C was a tough one for me. I just started feeling better a couple of days ago, and now it's time for my first treatment of Taxotere tomorrow. Holly, it's good to hear from you and I echo everyone else's sentiments to you - I wish we were located in the same area so that we could all help each other through these darker days. It seems that most of us are feeling the accumulating effects of these treatments.
I'm taking Benadryl and Dexamethasone tonight and tomorrow before my first taxotere ( of 4 .) Then, it will be on to rads. I'm hoping that this will be easier than the red devil and cytoxin!
So, girls - I will see you at the bar tomorrow, Wed. June 6!
Best wishes to everyone,
Marsha -
Marsha -- so good to hear from u! Good luck with the taxotere.
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cute purses, rosebud! love the pink one!
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Updated Bar Reservations for Wednesday June 6
Wednesday: Angel (#5), LisaSDCA (#5), Marshabel (#5 - 1st taxotere) -
GrammyNancy
I was in the hospital for 12 days! I had a viral infection.
I had no mouth sores with my 3 tx of FEC but the toxotere floored me. I have never experienced such bone pain. The mouth sores got so bad I could not eat. So I called the chemo clinic and they said come in to see them. They said my mouth was so bad and I had a fever I didn't even know I had. So 12 days later I am home. Yes there is not place like home and thank you for your kind words.
The only good thing out of it is I lost 10 pounds. lol
melissa -
Whitecotton..I'm in the same boat as you..bone pain! Mouth sores haven't been a problem it's just the bone pain that this tx brings and then add on the neulasta shot and I'm down for the week. I'm sorry to hear that you got so sick from this but there is better roads ahead for all of us..HUGS!! rosebud
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I didn't get home until 2pm from tx#5 - even after showing up just after 8am. grrrr. I feel like I have had an intimate encounter with a Mack truck - and one just in off a trans-con; all muddy, buggy and diesel-spewed.
Fortunately, about 45 minutes later a "knock came on the door"
Another beautifully done, cheerful BIG basket from my dear sister, chockfull of local fruits and GINORMOUS muffins. I'll have to freeze most of those to keep 'em nice and fresh - each looks adequate for two meals. They even included my favorites - Granny Smith apples. And there are huge bananas, seedless grapes, fat oranges, etc.
It's always nice to be remembered on 'the day', even though, being a partner in her busy law firm and working 70 hr. weeks, she doesn't get a chance to call or check in as often as we'd both like.
whitecotton - I am so glad you are back after your harrowing hospital stay! Besides the Biotene rinse (before the mouth sores happen - if they happen it can sting a bit) I now swear by daily Kefir for the health of my whole GI tract - beginning with lips. Lifeway makes one that is pretty easy to find, quite palatble, and an easy way to get an effortless chunk of protien in anytime.
Lisa -
What is L-glutamine? My feet are peeling, will it help me?
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Rosebud
I did not get mouth sores with FEC but now I have so many, they also called them mouth ulcers. yuk they hurt! I am so sorry about your bone pain this really sucks we have to have 2 more times. I am so looking forward to the last one! thanks for the hug I needed it.
Lisa
Lucky you for the wonderful basket enjoy it because you deserve it! We don't have biotene in Canada boo hoo. What's kefir -
Hi Lisa,
Being a fellow Canadian, I'll tell what I did for my sore mouth. I took 150mg of Diflucan each day following tx for 5 days. It really helped with the red sore tongue and canker sores. But, your mouth sounds really bad. I also got some Tantum rinse which numbed the mouth and throat and tasted really bad! I had my pharmacist try to find the Biotene, but alas, none could be ordered.
Of course, I figured all this out by my last tx!! But, I felt much better and I could eat better too. No oranges, apples, or pineapple, but it did get better faster.
Hope you feel better soon,
Christine -
Oh, Melissa - so sorry to hear about your hospital stay but glad that you are home now. I had a really bad mouth sore during my A/C treatments, and now that I started Taxotere, I was kinda hoping that it wouldn't be an issue. Oh, well. I had my first one of these treatments today, and came home already feeling very queasy, and then got a terrible back ache. Was it like that for you? How many more do you have to go?
Besides me and Melissa, is anyone else getting Taxotere?
Marsha -
MisK - nice to see you back!
L-glutamine is an amino acid chain that some studies have shown help with the peeling skin, neuropathy and even the mouth ulcers that come with administration of taxanes (taxol or taxotere). There are several of us on this cruise who have been using it. 30g/day, divided dose. It comes as a powder that mixes freely with a variety of liquids. I put 10gr. (not milligrams) in my kefir (whitecotton, kefir is a probiotic cultured milk product, frequently found near yogurt
http://www.lifeway.net/product/kefir.php )
or my juice or even my hot cocoa.
I also slather my hands and feet with Mary kay ExtraEmmoliient Night Cream when I get out of the bath (you can try Bag Balm or Amlactyn, too), and slip on white cotton socks before bed. It helps!
Lisa -
Marsha, there are several of us who have been getting Taxotere all along - as part Of TAC x 6.
My oncologist says the most common and most profound side effect he's seen over the years is FATIGUE.
I can say a"AMEN" to that. It's only the damned decadron that's got me up this late after my infusion. I barely napped last night, too.
Lisa -
I think when you get just the Taxotere alone the effects are worse. #5 for me is next Tuesday along with starting my rads that day. My Onc told me mouth sore would be worse with just Tax alone so I had the mouth wash before. It took me about a week to get over the se of this tx and I can say..I don't like this one even though the onc told me this tx would be easier on me..LOL
Last weekend we showed our show car at the Hot Rod Power Tour that came through here in Michigan. It was raining so I just gave up on any head cover. Yes ladies I went bald for all to see..LOL I had a few weird looks but I figured..what the heck. In the crowd I spotted another baldie just like me, a women in pink. It was so cool to see someone who knew what I was going through. I told her I just loved her hair cut..LOL
It truly amazes me that in that huge crowd, I had a cancer sister there. Just makes you think about how many women are out there, living and laughing and loving. That was one of my best days so far with this crap..Hugs all around..rosebud -
Go for my markings for rads on June 21st about 2 1/2 week break. Am going to ask for off over July 4 to go to see our daugther. I have been in some sort of treatment of surgery situation since January and need a break.
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Hi all,
Just wondering if any of you dear ladies will be starting Tamoxifen when you start your rads? I know some docs wait until after the rads to start hormone therapy, but at my cancer centre, you can do both at the same time. I've waited a few days to start cos we have two busy weekends in early June and I don't want any s/e - if I have any!
Just wondering . . .
Christine -
Hi, cruisers --
I had my first visit with the radiation oncologist yesterday -- I really liked her -- and will go for markings June 22. They might do a second set of markings to take special care to avoid my heart as much as possible. Unlike my first onc, the rad onc was extremely surprised by the drop in my MUGGA fractions. I have to go for 7 weeks -- 35 treatments.
Holly: It's terrible that you're so far away when we'd love to run in and check on you. Can you make yourself put the worries you can't do anything about right now on hold? Write them down and promise yourself that you'll wait to think about them until you have the strength. Everything is going to look more hopeless when you're feeling so sick, weak and tired.
Just FYI, the Y-Me National BC Org has a 24-hour hotline at 1-800-221-2141. I called them for information when I was anxious during the diagnosis period.
From their website:
"When you call the Y-ME Hotline, you can request to be paired with a peer counselor who had the same diagnosis, is the same age or has experienced similar challenges as you. The confidential, free-of-charge service is available to anyone who calls the Hotline."
whitecotton: I'm so sorry you had to deal with that infection. You'd think in cases like yours that they would make an exception with the Neulasta -- it's expensive, but it's cheaper than hospitalization. That was so sad about your roommates, but I also wonder if anyone thought about the wisdom of putting someone being treated for bc with two terminal people.
marshabel: I don't know about the back pain, but the taxanes can make you nauseated even though they aren't as bad as the other combos. I had a couple of bouts of queasiness after my last Taxol treatment, but I could control it with crackers. Maybe you need a little extra something in the drip for your stomach.
pmarsh: Good to see you posting. I totally agree -- I'm so sick of living with and thinking about cancer 24/7. It's like having an obnoxious tune in your head you can't get rid of -- except tunes don't scare you to death in the middle of the night.
Bettye: How are you doing after your first FEC?
MissS: I'm noticing the double whammy with Neulasta and Taxol, too. I never had any problems with Neulasta while on AC, but I was describing my aches and pains to the onc this last time, and he said some of them were the Neulasta. Hmmph!
rosebud: Sorry you're getting hit so hard by the Neulasta and the tx. So close to the end!!
playwright: I never said Happy Birthday to your DD -- glad she enjoyed her KFC party.
Lisa: Sounds like you did everything right for your weekend guest. Nice that he had such a need to see TV!
I hope you don't have a repeat of the headache -- I wonder if like some other se's it could be an allergic reaction.
Props to your sister for that wonderful muffin basket.
Good to see you MisK. I'm still having some neuropathy, especially from being on the computer, but I think the L-glutamine has really helped. It's much milder than it was.
Nancy: I know what you mean about dreading a treatment going in. Sometimes I've been nauseated even before anything started! Congrats on hitting the 5/6 mark. I must admit I've been jealous of those of you who are hormone-positive, but I can see where facing more years of medication would just drag you down sometimes.
Keenie It's a pain that some people just don't get it. My boss's eyes literally lit up when I told him my last chemo was 6/14. I need to bring in some literature about the lingering effects of chemo, and the fatigue associated with radiation before he starts sending me on long business trips. Sheesh!
Nana45 -- Sounds like we're on a similar schedule. I'm also hoping to start rads the week after the 4th. No special plans - I just want a break! -
so who refers u to the rads onc? my normal onc hasn't said anything about it.
nice to hear from nana45 and maxgirl. anyone heard from taurie? -
Playwriter..My Onc refereed me but this was all set up before I started chemo. I believe my surgeon did it all but I'm not sure. I saw my rad lady the day after my first visit with my onc. I'd ask your onc about it.
Kennie..I won't start Tamoxifen till after chemo is done since I am doing chemo and rads at the same time. But, I think the onc. told me I would start that after rads..
I was just thinking of Taurie...do we need to get the life boat out yet? Hugs to all..rosebud -
I think the thing that makes me saddest is when I feel like absolute crap from chemo and then I realize that there are so many out there dealing with so much worse than I am. Then I start to feel guilty. What a long, strange trip it's been. I pray for all of you who are having it so rough.
I am going on the Race for the Cure tomorrow. My boyfriend is going to push me in a wheelchair because I just don't have the stamina. They are expecting somewhere between 20,000 and 30,000 people!!! And they are also expecting around 1200 Survivors. I count myself one of those survivors. I will be walking for every one of you.
Put me down for TAC #5 on Weds 6/13. I keep thinking, WOW, ONLY TWO MORE TO GO. And THEN I think, OH MY GOD, TWO MORE TO GO. Then it is on to rads for me. I have my set-up appt the second week of July and will start rads the end of July for 7 weeks. The good thing is, my ps is saying new boobs around Christmas. Ho, Ho, Ho!
I hope everyone has a good day, a good week, a good something. -
This was all set up by the surgeon, my initial consultation appt with the radiation oncologist and the consultation with the medical oncologist, and at that point after chemo the medical oncologist office called radiation to say I was done and set up the appt for the markings.
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Found this on another thread, dated May 5, don't know if it's still open or not.
"I spoke with a colleague who free-lances for PEOPLE magazine today and
they're looking to do a story on the following profile. If anyone knows of
any potential candidates for this story, please contact Macon Morehouse
directly at macon_morehouse@yahoo.com or 202-441-2319. Thanks!
PEOPLE is looking to potentially do a story on how patients are coping with
the high costs of medical care, in particular, the costs associated with
some of the pricey new cancer drugs such as Gleevac, Revlimid, Avastin,
Tarceva, Erbitux, etc. The magazine is hoping to profile a patient --
ideally a woman in her 30s, 40s -- who has run up staggering medical
bills/debt trying to pay for her care [editor is hoping for bills/debts in
the 100s of 1000s -- if that is unrealistic, please let me know] and who is
doing everything she/ her family can to juggle those costs and creatively
handle at least some of the debt [such as taking out extra mortgages,
selling family heirlooms, dipping into the kids college funds, taking on
extra jobs, or the kids taking on extra jobs, living on PB&J sandwiches,
holding bakesales, etc." -
I am still alive....barely. I had TAXOL x 12 with hardly any SE. But boy, FEC is a different animal. I had a killer headache for 2 days and nausea. Then the neulasta shot and bone pain. I still have dull headache. I'm with the rest of you I hate chemo, I hate cancer, I hate Dr.'s. I am just so tired. I don't know if I can do 3 more FEC.
Bettye -
Bettye -- u can do it! God is with you, and He is mighty to save!
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Oh Bettye - absolutely you can do it with God's help.
The day I was dx, this verse was in my devotion for the day:
I have set the Lord always before me: because He is at my right hand, I shall not be moved - Psalm 16:8
This was such a comfort to me because my tumor was in my right breast and I'm right handed. The Lord gives you what you need and I'm going to pray that you get the strength you need to see this part of the journey through.
Christine
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