The Chemosabe March Cruise

reporting in too, everything went fine. What a long day though, got there at 8:30, met with my nurse (love her), then met with the financial office to go over all insurance stuff, then they walked me down the long dreaded hall way to the door that says INFUSION ROOM. I was dling just fine up until that point, I started crying!!

With the taxtore/cytoxan, the infusion lasts longer than you guys getting the A/C. They give you the taxtore slowly to watch for alergic reactions, which I did fine , but when they started the cytoxan my nose and sinuses started feeling funny, so they slowed it down. The entire infusion including pre meds etc took about 4 hours. Met some really nice people there, center provided lunch for us, turkey sandwiches and crakers. For anti nausea meds to take home I got prochl drepazine & lorazepam then some jell stuff to put on my wrist... Never heard of any of these, but so far they seem to be working ok.

Patti what a lovely story, I believe everything happens for a reason, some we are not to understand. like this trip we're on.

Maxgirl, glad your dance went well also.

Lisa, I feel for you. I think you also need to be persisant to get the best treatment possible. I had a similar experience as yours, I went to 3 ONC, got 2 diff opinions from 2, and the 3rd said both would be fine, there was no real clinical study done on your type of cancer, so to go with my gut feeling!!! I walked out of there totally mortified, "go with my gutt feeling"? this wasn't like I was trying to deicde to stich up my big toe
or not. jeez....

Angel, welcome to our cruise. Sorry to hear about your husbands problems. When it rains it pours doesn't it. And thanks for all the great tips!!!

Holly & Jillrush, I know your cruise is tomorrow, heres hugs to you and we'll be holding your hand.

Wow, Patti your boss has some serious issues if she thinks your everyday issues are worse than cancer!!! She definitely needs some prayers.

Higs to everyone for tomorrow!

sorry i'm so ignorant, but what does "triple negative" mean? i know two of the three are the er/pr and her2/neu, but what's the third thing?

Linda and MaxGirl, I'm so happy that things went well for you today. I thought of you often.
Jill and HollyHopes here's hoping that your sailing is as smooth. My thoughts and prayers will be with you.
Donna, when I had my mastectomy I was so worried what would happen when that pain pump came out (I had On-Q) and I must say that there was no problem. I had a hard time believing that I had a boob cut off and there was no pain. They only thing that drove me buggy was the drain....that was finally removed after 3 weeks (and that wasn't really that bad).

Well, I visited my new onc and I really like him. Very nice, knowledgeable and empathic so I've signed up for the cruise. I'll be departing at 11 am on Tuesday the 13th with a TAC cocktail every 3 weeks for 6 times of bellying up to the bar. I sure hope I like these cocktails, I'm usually a glass of wine or Margarita type of gal.

Port put in tomorrow.....does this ever end......

Hugs, prayers and love to all,
Nancy

Linda, glad to hear you did OK today and hope it continues. I broke down a little myself when I was trying to explain why I didn't want to take Decadron.

I got an upset stomach this afternoon, and the compazine didn't seem to help much, but the Ativan (same as lorazepam), or maybe the combo of the two helped. I'm not ready to eat heavy food by any means -- even water tastes "heavy" but the popsicles, ginger ale and sherbet aren't causing any problems. Guess we'll see how the next few days go.

The gel you were given sounds like something people are given for seasickness. It's good to have something that doesn't need to go in your stomach.

Welcome, Donna, we could use your experience. I did push a lot of water this morning and during the treatment, and maybe it helped. Hope you're as pain-free as possible!

Holly and Jill -- We'll be thinking of you and pulling for you tomorrow. Remember that if you're feeling bad -- it really helped me today.

Playwriter, the er/pr counts as 2 and the her2/neu is the third, so if all three are negative, we can't take Tamoxifan or Herceptin to prevent recurrence, because they don't do any good.

Nancy -- Glad to hear you've got a schedule and most of all that you like the new onc. Good luck with the port.

Max

Linda, I read a lot of threads on this site and saw your post (I am in the Feb chemo cruisers)... I am with you with the well intentioned people who mention all these women who had "the same thing" 20 years ago... but nobody knows the pathology report of these survivors... I am delighted for them, and hope they are right and we will have many more normal years ahead of us... The people I know who went through BC do not know themselves their exact diagnosis... hard to believe how "uninterested" people can be about their own body. When you see the variety of cases represented on these boards, it's mind boggling. As far as the health status prior dx, how many of us are just like you... a lot... I am 54, can't remember when I had a cold last (except since I started chemo... ), awash in broccoli, greens of all kinds, whole grains, beans (see thread on IP6), olive oil, garlic, you name it... walk 3-4 miles a day (have been for years) thanks to my doggies... and... voila...
I had 2 AC so far (Dose dense every 2 weeks+ avastin + Neulasta), and I have been blessed with mild side effects. The premeds are really helpful. And I walk every day, which DOES help tremendously (body and mind).
Anyway, it will be a great day the day we can understand why our dna started going bizerk... Your feeling of frustration is so understandable... We have to sail through the chemo storm, though, so hang in there... I am amazed how fast things go once you get started on the tx... and then we'll focus on getting over all this, and getting into even better shape...
Have all a good night...
CatherineH

I had my MUGA yesterday, and for those who are still waiting for it, it is very easy and fairly quick. You get to keep your clothes on while they take the pictures. Today I had a tour of the infusion room and it was stocked with lots of brochures and catalogs about wigs, hats, scarves, etc. They also had a couple of bins full of donated wigs, hats, and scarves, which I thought was a cool way to try something before you buy it. I have a bone scan and CT on Monday - not looking forward to drinking those wonderful barium cocktails, but I will just think of them as part of the sail away party! My chemo starts on 3/14, and I am getting A/C this round. Does anyone know how long that takes each time?
Good luck and prayers to those who are boarding tomorrow. I will be thinking of you while I am getting my port placed.

Marshabel in Arlington, Texas

New list:
Here is a updated list,
Cruise Members So Far:
1. Taurie, FL, A/C + T
2. Cynthia1962, CA, A/C
3. LindaDK, KS, T/C, start 3/8
4. Rosebud1962, CA
5. Holly Hopes, CA, start 3/9
6. GrammyNancy, GA, TAC, start 3/13
7. Maxgirl, Maryland, A/C + T, start 3/8
8. Ducky1, Canada
9. Refugee, NeOH, A/C, start 3/5
10. Jillrush, Louisiana, A/C + T, start 3/9
11. Playwriter (Terri), TX,
12. Marshabel, TX, A/C, start 3/14
13. Pmarsh34, NC, TAC
14. Marsha2664, A/C + T, start 3/5
15. BarbKirk, A/C, start 3/12
16. LisaDCA, CA,
17. Angel-CA,(6 Adriamycin/Taxotere/Cytoxin)start 3-14
18. JannM, , T/C

taurie -- Sorry to hear you had such a reaction to the port insertion. Mine didn't feel like a truck, but more like someone socked me in the collar bone. It's still pretty sore but getting better every day.

What kind of pain meds are you on? The doc can change them if they're making you sick. Tylenol #3 with codeine can upset my stomach and so can Percocet, so I've been using Darvocet when I need it.

marshabel -- Good luck with your port placement today.

jann -- Welcome to the cruise! Glad to hear your tx plan is in action.

Angel -- A MUGA is a heart scan. Some of these drugs can be toxic to the heart (more fun!), so they do a heart scan or echocardiogram to get a baseline of heart functioning. Not all protocols require it.

Linda -- Angel food cake just went on my list!

I thought someone asked about how long the A/C took, but I can't find it again. Anyway, the A took about a half hour -- with the nurse infusing two syringes into the port, and then about an hour on the C IV drip.

Max,
Thanks for the update on the MUGA. Already had an echo so I guess I'm good to go unless it stops beating sometime between now and Wednesday.....lol

Taurie (Dawn)
My port was a bit sore in the breast area when it was first inserted kind of like a bruise. It only lasted about 2-3 days and got better. However the one in my neck drove me nuts for a week and got better too but it still has that tenderness to it if I lean over to pick something up etc. I hear a lot of women here complaining about the neck areas more than the port site itself after time though.

What is the port in the neck area for anyway?

I'm a bit worried about mine since I've had it 5 weeks now and hope it flushes ok on chemo day. Doc said it shouldn't go longer than 6 weeks before flushing. Remember I had to postpone chemo because of hubbys surgery.

Is anyone here doing the Adriamycin/Taxotere/Cytoxin as one treatment like I am. If so I'd love to hear from you.
I hear it's gonna knock me on my butt...which probably wouldn't matter too much with all my padding anyway....lol

Good luck to you girls who are starting this Monday. I wish you well.
Angel

Holly checking in! The first treatment was smooth and without complication. No unpleasant symptoms yet but I went for the heavy duty pre-medication for nausea.

I did have a heck of a time with the PICC line insertion. the first time the nurse hreaded the line into my jugular vein...oops! By the third unsuccessul attempt she and I were both crying. I was sent over the the hospital where two MD's struggled withe the help of guided fluoroscpy to get the line in place. It's there and settled and looking good. My entire arm is bruised and painful and hurts more than the surgical incisions on the 'bad' side.

I'm so relieved that the first go round is complete...not sleeping much at my house tonight...it's 2am and you aall are keeping me company...thanks sisters!!

Uh, smell? roses? Not now, thank you.

I'm feeling a little rocky again this morning, and my mouth is starting to feel very dry and weird, though not sore. A baking soda rinse every 2 hours is helping, and a friend recommended sucking on apple slices, which seemed to help some, too. I just took an Ativan to help with my stomach.

Nancy -- I know what you mean about the checklist. Jeeze, my dance card was full last week! This coming week I have only two appointments scheduled -- a post-post visit with the surgeon on Wed. and CT scans on Sat. Oh, yeah, sometime in there I think I need bloodwork, too.

taurie -- OMG -- I can just see you stuck in the bath. LOL Glad you have a good sense of humor about that; I'd be too afraid of ending up in the same situation to try it. Sorry you had such a bad time with the anesthesia. I hope things are settling down in stomach-land and that your arm isn't too sore.

Holly -- Glad to hear the tx went OK, but youch on the PICC line! I hope that's all fixed for the next time.

Angel -- Can you check with the doc about your port? The onc nurse did a saline flush of mine, and it took just a couple of minutes. Seems like they could wash you out at least once before the chemo visit.

Sheri -- It's so good to hear about your appetite returning in 4 days! Something to look forward to -- even if it's 5 days.

I keep thinking about contacting a support group, but right now with all the appointments and trying to squeeze in some work when I can, it just seems like one more thing to have to do.

Neulasta tip -- For those of you self-injecting, my onc nurse said patients had told him it stings less if you do it in the belly. Yeah, ugh, I know. But I just grabbed a roll and hubby plunged it in. Not only did I hardly feel the needle, I had no stinging at all. I kept asking him if he was sure he'd done it. Next time I hope to get up the nerve to do it myself.

Off to shower.

Max

Happy Saturday, everyone -
Taurie, I had my port put in yesterday, and I basically had the same experience that you had. Threw up all the way home in the car, then was so nauseous all night that I couldn't stand to move my head. I'm feeling a little better today as long as I don't look down and move slowly. It's like extreme motion sickness! The nurse that wheeled me out of the hospital said that if I had any more surgery, I should wear the motion sickness patch that I use when I travel. Sounds like a good idea, but I wonder if it would interfere with any other meds/anesthesia? Anyway, hoping that I don't need any other surgery until my port removal. I hope you are doing better today.
Angelflight - I will be doing Adriamycin/Cytoxin the first 3 months, then Taxotere. I will start on Wed. 3/14. Have you started yours yet? Let's compare notes and symptoms!
Here's a toast (with my pretend bloody mary) that everyone has good day!

Marshabel

Hey everybody! I survived my first treatment!! One down 7 more to go. Treatment itself went some. They gave me some heavy-duty nausea drug before they started. The nurse told me to start taking my nausea drugs as soon as I got home. I did and ate some soup. Took a nap and when I woke up I was feeling nauseous and had a bad headache. That continued until about 8pm when I coudn't take it any longer. I threw up everywhere. My poor DH had a huge mess to clean up. But I did feel better. Anyway, slept well last night and woke up with the headache. Don't have much of an appetite but making myself eat and drink. So far no nauseau today.

Holly, glad your treatment went well. Sorry to hear about the problem with the PICC. Hopefully it will be better next time.

Thanks for everyone for asking about me. Hope you all have a great weekend.

Hugs to all, Jill

Quote:

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JannM, welcome to the group no one wants to join. Are you doing the T/C Taxatore Cytoxan combo? I'll make sure you get added to our ever growing list. Its only 3/9 and our little group is growing fast, how sad.
The Avitan seems to help people sleep well and takes the edge off theis crap we're dealing with.

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Yes, it's the T/C combo. And I tried the avitan last night and it's wonderful stuff. Best night's sleep I've had since this started, and I don't feel groggy today.