The Chemosabe March Cruise

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  • playwriter
    playwriter Member Posts: 316
    edited March 2007
    ok, I'm a day away from the cruise. here are my questions:

    do i take the senekot just as needed, or as a matter of course?
    should i suck on ice chips/popcicles the whole time, or just during one of the chemicals?
    i got a script for Zofran today. it said take one every 8 hours. is that round the clock, and do i take it every day?
    should i get Emend in addition to Zofran?
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  • musicmom3
    musicmom3 Member Posts: 31
    edited March 2007

    Playwriter - I have the same questions, drugs, popsicles and all. I priced the Emend yesterday - WOW! $367 for 3 capsules. Zofran is a bit better. Wonder what makes these drugs so expensive. I picture some guy in a lab with tweezers making magic anti-nausea tablets. Somehow, though, I think the profit margin on these babies must be way out of line. Wonder how many drug rep lunches/getaways our oncologists go to. Don't mind me, I'm a nurse and I don't have alot of respect for the pharmaceutical industry. I've seen docs receive basketball tickets, dinners at 5 star restaurants and fully catered functions, just so the reps can push their products. Whose paying for those tickets, jaunts and dinners? We are!

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  • steph_j
    steph_j Member Posts: 71
    edited March 2007
    Playwriter - they say that the bathroom issues can go either way, so you should wait and see b/c you could end up having to do imodium as opposed a laxative. However, most of the anti-nausea meds are constipating. My nutritionist says that taking a stool softener such as colase regularly is much better for the system than taking too many laxatives (i.e. Senekot), as the body can become dependent on laxatives. So I only take Senekot if all else is failing and I only take it for a couple of days at a time.

    I did not get Zofran. I got Emend with decadron, Amoxi, Kytril, and Compazine. Ativan was held off as a last resort, but I may request it for AC#3 as I hear that #3 tends to be really hard. Take your meds as recommended, especially during the first 4 days because they are lifesavers when it comes to nauseau and they typically do prevent vomitting. I just have times when I feel really queasy like morning sickness and that typically occurs the first 5 days and then begins to subside.

    Hope this helps and good luck on your cruise!
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  • steph_j
    steph_j Member Posts: 71
    edited March 2007
    Musicmom - I am on the other side of the industry (I work at at pharmaceutical company) and although I agree all of the perks for the docs doesn't look good, drugs cost a lot of money to develop. We had a drug fail after spending $10M on a trial, so if it had worked we would priced it to recoup some of the money put into it. The main thing is that if the docs won't prescribe a good drug like Emend, it doesn't help the patient. So to me what is more important is that good drugs are made available to the patients, and sometimes promotion by the company and the reps is the primary way. The main culprits are often the insurance companies that won't pay for the drugs that we as patients need.

    I agree that Emend is crazy expensive - one of my best friends works for the company that makes it and she says that it has been slow to catch on. So once these drugs are shown to really work, hopefully they will get prescribed more as needed, and the prices will begin to come down.

    So we should all let our docs know when our drugs are working, so we can keep getting the best drugs that are out there.
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  • Angelflight
    Angelflight Member Posts: 163
    edited March 2007
    playwriter
    I was prescribed Decadron and Zofran before my 1st Chemo. Was told to take a Decadron the night before. The next day I was given both by IV so didn't start on any the day of chemo itself. Then the day after Chemo to start taking them round the clock for the 3 days or so prescribed. Don't miss a one of them or you'll pay for it believe me. I was also given a script for Compazine which I am supposed to take after that 4 times per day.
    I think the ice chips and popsicles are a matter of preference and I didn't use either of them. I would however take 2-3 tylenol or Ibuprofen before your chemo since you're going to be doing the Cytoxin. You might want to have the chemo lady put that one in slower too since most of us are ending up with the C-headaches.

    If you have any questions whatsoever before Chemo contact the Infusion nurses (wether or not you have one yet) and they will tell you what to do.

    Praying no one has to see porcelain today.......lol

    Angel
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  • onlygirl4
    onlygirl4 Member Posts: 18
    edited March 2007

    I will be taking dexamethasone the night before my chemo as well as the morning of and the night of. Instead of AC I am getting Carboplatin and Taxotere with Herceptin. Is anyone else getting this? My oncologist won't use the AC anymore because of the heart problems and he likes the recent studies that have come out using the TCH. I won't be able to take Zofran as the anti-nausea because we found out during my surgery that it gives me a massive migraine. Some of you getting headaches and Zofran may want to explore that possibility. I will also be taking an ativan before because my anxiety level will be through the roof. I'll let you all know how it goes.

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited March 2007
    It continues to amaze the number of people joining this cruise. This beast is everywhere! I welcome all you new cruisers and wish that you had not had to join us. You are all in my prayers and thoughts.

    I went yesterday for my blood test, one week post first treatment and while my WBC count was okay my immune system was pretty much non existent. So now I have to stay away from everyone. Started having the dreaded D two days ago, started immodium this morning sure hope that works. Anyone one have any tips? I go back for another blood test in a week, keep your fingers crossed.
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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited March 2007

    Everythings going pretty good the day after my first treatment. Have and headache, and feel like I'm hung over but I have such bad heart burn. Going for my Nuslasta shot today and that should be it till blood test next week. Welcome everyone who is new..this is a great place to be and I'm glad you found us. You'll get a lot of good tips! Welcome aboard! Rosebud

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  • dmknanny
    dmknanny Member Posts: 60
    edited March 2007

    I hope this cruise has not completely filled yet! I was just telling my husband last night that I WILL be in tropical waters sometime this year! DX 12/28 w/ Right BC.ER/PR +, FISH results not back yet. Opted for bilateral mastectomy & immediate TRAM flap reconstruction 2/6. Surgeries went well - tumor was 5.1 and 2 positive nodes, so I'm IIIA now. Recovery from surgery went AMAZINGLY well - nothing like I expected. Had MRI's, PET Scan. MUGASCAN, Mediport put in 3/6 and yes, I found that to be more uncomforatable than the breast incisions and the 46 staples in my abdomen! The placement around bra lines is an issue, but I normally just wear those camis with the built in shelf, because I'm so perky now I don't need a real bra! Chemo started yesterday 3/20 - Happy Spring - and so far, with the help of Emend and Compazine and Dexamemtzone and Ativan I'm feeling fine. Getting ready to go in for my Neulasta shot in and hour. So please book me with a beuatiful suite - I would prefer one with an outdoor deck - and I'll meet up with you all in the lounge to enjoy a chemopolitan with you!

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  • janet11
    janet11 Member Posts: 262
    edited March 2007
    Re: senekot. I kept a journal through my 'chemo journey': I simply labeled blocks from 1 to 21 (for days 1 to 21 of my 3 week cycle). One column was for how I felt. The second column was for what drugs I took.

    After the first cycle, I saw where I had problems. For example, I was PAINFULLY constipated the first 4 days. So cycles 2-6 (I was on TCH, not AC), I took one senekot nightly for the first 5 days starting the day BEFORE chemo.

    After that it converted to major diarrhea. My onc said to take 2 immodium if that happened. Take one more for each subsequent "episode". That worked for me.

    Thanks to the simple journal, I knew what side effects were likely to hit and when for later cycles. And my onc was delighted to see it -- it helped me not forget things.

    Good luck with your treatment.

    My last chemo was Dec 27, 2006 and I'm still getting over the side effects (no, don't worry.... The main side effects of my 6 cycles of Taxotere were taste changes. I've only started being able to drink coffee again about 2 weeks ago, and I still haven't regained my taste for chocolate. From the time I started chemo, and for the FIRST time in my life, M&Ms are safe in my house (*laugh*).

    But the taste changes were bad enough that my journal was my lifeline: I KNEW that the bad taste in my mouth was normally days 5-10, so I looked forward to day 11 like you wouldn't believe!!! Yes, what happens on each cycle does change a bit. But this gives you some good 'guidelines'.

    Janet
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  • pmarsh34
    pmarsh34 Member Posts: 108
    edited March 2007
    Nanny, I am so glad to hear your surgery went so well. I too had immediate recon but with expanders so I am not near done yet. I have my first cocktail in the morning. What kind are you getting? Our situations sound very similar. Right down to wanting a room with a view! lol. I would like to know how the neulasta effects you, too.

    Hugs and prayers to all on the cruise. I am settling into my stateroom and will be ready when the ship sets sail.

    Patti
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  • musicmom3
    musicmom3 Member Posts: 31
    edited March 2007

    Steph-J - Didn't mean to offend you, but I see so many patients fall through the cracks, like Angels friend who is going without care. The CEO of my HMO made over $13 million last year, $37 million in stock options in 2005 and no, they won't pay for Emend.

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited March 2007
    Hello Only - don't be lonely - we are ALL here for you!! I am having my 2nd chemo on Friday and I will be sending you good thoughts and positive energy...we all move thorugh this journey in our own way...but there is lots of wisdom and love here for you...

    Hugs from Holly
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  • steph_j
    steph_j Member Posts: 71
    edited March 2007

    musicmom3 - I wasn't offended and I do understand how not being able to get good meds is an issue. Your example of the CEO of the insurance company is my main problem - those execs make millions while patients can't get the drugs they need. It just isn't right.

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  • steph_j
    steph_j Member Posts: 71
    edited March 2007

    Playwriter - Emend is a newer antiemetic that just got approval last year, whereas Zofran has been around for a few years (since 1991). Since Emend is pretty new, it is just starting to catch on. I would ask your onc. his/her opinion about the two drugs - but they should both work effectively.

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  • onlygirl4
    onlygirl4 Member Posts: 18
    edited March 2007
    Thanks Holly,

    Well, I just found out that they aren't going to let me start my chemo on Friday now because my liver enzymes are elevated and they don't know why. They have rescheduled me for next Friday. I don't know whether to be relieved or upset. I wanted to get started so I can get it over with but I am so terrified of it that I feel more of a relief. Of course I'm a bit concerned about my liver enzymes but I think it will all turn out to be nothing. I told my husband that maybe this is showing me that I really don't need to be doing chemo and I should just skip the whole thing. I'm one of those people that likes to put their head in the sand and pretend there is nothing wrong so it's very tempting for me to just call the whole thing off.
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  • whitecotton
    whitecotton Member Posts: 106
    edited March 2007
    Rose glad things are holding up for you. i think we drank way to much at the bar because my hang over is really bad! lol. Not sleeping much and have wicked heartburn. Dh rubbed my back alot to help the burps. I felt like a baby being burped.
    Cynthia gald to hear your doing well to and thank god for mom's, Mine is coming to stay with me this weekend as dh is away. missshapen you have a great attitude and glad to hear it was not so bad and you went out for din afterword. I admire you. I just crawled back to the couch and ate soup.
    Angel what a tough week you are having with your friends daughter and your hair going so stressful for you. Try to keep up your wonderful spirts I love reading your posts and what a cute website. Taurie i hope things get moving for you, your waiting must be just so frustrating. I feel your pain girl.
    more in a bit.
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  • whitecotton
    whitecotton Member Posts: 106
    edited March 2007
    Playwriter, musicmom3, steph j and everyone else talking about expensive drugs. that is one good thing I guess about living in Canada. we don't tend to have the expenses you guys have. We do pay in a 14% sales tax and a very high income tax but I guess it is like and all inclusive vacation you pay upfront and for those of you that eat a lot and drink a lot you get your money's worth and don't have to dig in your pocket. Only your drugs for nausea, pain etc. even then the gov't has plans for assistance based on your income. so no to much suffering up here. I feel for all of you that have to face this in the middle of such huge crisis. its not fair to think about money as it is the most stressful thing to worry about in the first place. My prayers are out for all of you for no worries!
    ANGEL how horrible about your friends daughter, I am sick about it. So much stress in your life right now with your hair and all. Let me know things work out and I loved your web site so cute.
    Welcome Onlygirl and dmknanny we have a stateroom waiting for you.
    Holly good luck on Friday and let us know how it goes! Us late comers are waiting for the second seating at dinner. this ship is getting crowed. Make sure you leave some cake and goodies for us late arrivals. lol
    Melissa
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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited March 2007

    Whitecotten..My Onc told me today that if you get heartburn from you can take any of the OTC heartburn treatments. You should ask if you can too. My tx is F.E.C. or as it says on this site...C.E.F..LOL I have that for the first 3 them detaxoel?? for the las 3. Anyway, I'd ask cause there's no reason to feel bad. I even went shopping today after my shot. If not for the heartburn and the hang rover feel, I'd say so far..so GOOD. I'm still eating bland food but hey, jello isn't all bad..LOL Here's a jello shot for you my friend..Just say no to the porcelain god..Hugs to everyone..Rosebud

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  • whitecotton
    whitecotton Member Posts: 106
    edited March 2007
    rose
    I am on fec x3 and detaxoel x 3 too.
    I did not get a Nuslasta shot what is it for? I think it is an American thing. Any Canadian's getting it?
    Are you having rad's after?

    Anyway ladies I was wondering how old you all are?
    no real reason, other then just plain curiousity.
    Hope you are all having a good night.
    hugs you ways!
    Melissa
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  • jpsgirl96
    jpsgirl96 Member Posts: 240
    edited March 2007

    Hello all, Just want to say I'm two days from the first anniversary of my first chemo (TACX6) and our little cruise group was visited from time to time by 'veterans' and it helped me to know there was an end, life on the other side, etc...I finished July 6, ditched the wig (for light fuzz) about a month later, celebrated my 50th (and my husband's) after rads in October, and now feel great, look pretty good for an old broad (hair is now salt and pepper and sorta curly/wavy, brown and straight before). I couldn't have made it without my March sisters here - you are all awesome women by the sounds of your posts - hang in there for yourselves and each other. Thinking good thoughts for all...Leigh

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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited March 2007

    Hey Whitecotten..The Nuslasta is for when our white blood count drops. It's I believe a new drug to help replenish the white count so we have less days of infection and we are able to keep our strength and continue our chemo on a timely basis. At least that's what the onc said. My age..LOL..I'm 44..Rosebud

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  • Keenie
    Keenie Member Posts: 258
    edited March 2007
    Hi, Another Canadian here and no, I haven't had any neulasta to boost my counts. I had my second AC today and we very stressed about the vein finding scenario, so they gave me an Ativan to take the edge off. It took three painful pokes to get a good one. I've got the hiccups at the moment, so my typing is going wonky. I'm only on Zofran and Gravol for nausea as I had reactions to the decadron and the Stometil (sp). So I'm asking the Lord to give me a settled few days and hope to make it through without incident. I'm also going take the Senekot starting tonight.

    Hope every one is having a great week.
    PS: I'm 46 - told I was young to be in this club of BC survivors
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  • marshabel
    marshabel Member Posts: 142
    edited March 2007
    Hey, Whitecotten.......I turned fifty in January. Guess what I got for my birthday? LOL

    Marshabel
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  • LauraZ
    LauraZ Member Posts: 15
    edited March 2007
    Hi all, hope one more can join the cruise. I had my first tx of taxol 7 days ago and am still having some lingering joint pain, but overall it went well. I'm not looking forward to the hair loss thing, but know it will come back eventually.

    Keenie, I'm 43 and have also been told I'm young for this club, but here I am! Glad to know I'm not alone, but sorry the membership is so large.
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  • refugee
    refugee Member Posts: 13
    edited March 2007
    I'm 46. One of my favorite buttons says, "Cleverly disguised as a responsible adult". I don't ever want to grow up!

    My hair started falling out yesterday, day 15. Today it was pulling right out, so I buzzed it off a little while ago. It was fun! I've always wondered what it would be like to shave my head, haha. We got a good pic of me with a sprayed-on blue mohawk before I finished it off.

    Got my last expander fill today. I'll go back to start talking about the transfer process when I'm done w/ chemo in May.

    Welcome to all the new folks, and good luck to everyone getting a treatment soon. The hugs and helpful advice are flying fast and furious around here!

    Sheri
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  • playwriter
    playwriter Member Posts: 316
    edited March 2007
    got my hair cut today. state room is booked for tomorrow, so i figured what the heck, why wait. donated it to locks of love.
    trying to get all the laundry done up....
    i'm 44.
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  • maxgirl
    maxgirl Member Posts: 407
    edited March 2007
    Angel -- What a heartbreaking story about your friend's daughter -- it really is a travesty that she thought she had no options, and as for her lowdown husband -- grrrrrr.

    Playwright -- My onc nurse had me take Colace and Senekot the night before chemo and every day after until things were moving. I never got the D.

    I chewed on ice and drank water through the A, but stopped the ice during the C, which may have been a mistake, considering the mouth problems I got. I did use hard candy, too. I'm going to try the ice through both tomorrow.

    dmknanny, Laura -- Welcome aboard -- this weird boat seems to expand in size with every new cruiser, and the bar is well-stocked, so pull up a lounge chair.

    Janet -- That's a great idea about the chemo diary. Tx#2 is tomorrow, so I'm going to write down what I remember from the last 2 weeks and keep notes from now on.

    Onlygirl -- Sorry about the on-off scheduling of your chemo. Uncertainty is never fun.

    Leigh -- Thanks so much for posting! It really does help to hear from you "graduates".

    refugee -- Funny about your mohawk! I'd be tempted just because my younger son used to wear huge ones.

    My comb was much more full this morning (Day 13), and when my hair was wet, it was obvious that my part had grown, so if I'm up to it after chemo tomorrow, I'm getting it cut off.

    Only new side effect is a small dark spot on one thumbnail.

    Gotta see the onc doc at 8 am, and the chemo starts at 9:30.

    Good luck to all new cruisers and hope the SEs are all mild.
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  • Angelflight
    Angelflight Member Posts: 163
    edited March 2007
    Grammy Nancy

    I got the big D for 2 days as well. Well I got to thinking about it and as soon as I laid off the Compazine the D stopped. Kind of figured that was causing it since the D and pill were both the same color.....sorry to be
    graphic.

    onlygirl4
    Good point on the Zofran. However most headaches are due to the Decadron or Cytoxin. Usually when being infused with either one you'll notice the headache affect right away. But as you said you had a reaction to the Zofran so could be that for some as well.

    whitecotton
    The heartburn is normal. Pick up some pepcid ac and start taking about 3 times a day. Worked for me. I can pop a tums here and there in between if I get it but for the most part the pepcid worked. Glad you enjoyed the website. I wasn't sure if anyone actually took the time to look at it or not. The Neulasta shot the day after chemo is to try to keep the white blood cell counts up.

    Janet11
    Great idea about the log. I keep a notebook for everything to do with my bc. The log on the meds and food were just another part of that for me as well. I too saw where my problems were and mine were the Compazine the past 2 days. Great idea!

    dmknanny
    Welcome aboard! Sorry you have to take the cruise with us but as you can see we're going to have more fun here than just Chemo itself. In fact I think the loung singers are up in a while so off to see a show.....lol

    Welcome everyone new and old. Hope everyone who has new or 2nd round treatments this week fair well.

    Angel
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  • taurie
    taurie Member Posts: 84
    edited March 2007
    Good luck to everyone tomorrow, am getting more nervous too as it apparently is getting closer. Muga was done today finally, they said 24 to 48 hours before dr would have the results. Went to get my glasses redone today, but now getting a toothache. How am I supposed to do all this before chemo now? But looks like I still might make it before the boat pulls out here.
    Muga was a breeze, they kept saying are you ok? I thought if you knew what I have went through so far you wouldnt even ask haha.
    I am 44 for the age question, seems like alot of us are in the 40s group, and they say thats young for this, were we hand picked to win the lottery of this cruise? I want a recount!
    Max, sorry to hear about the hair, but think of those sexy scarves and the cooler head this summer.
    Angel, prayers go out to your friends daughter, I do sympathize with her, know some of the feelings, but seriously and not to offend, I have no insurance either and owe the hospitals over 40 grand now but they have continued to treat me. Why hasnt she been treated somewhat at least to the point where she cant anymore? Hospitals that are public run have to treat.
    Dawn
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