The Chemosabe March Cruise

I've been waiting to have my scans approved by the insurance and I finally got a call today from the imaging place. You're not going to believe this, lol. She told me that they and all the other imaging places were told to stop doing nuclear scans because there may be a problem with one of the solutions they use. So...I'm schedule to start chemo on the 19th but they have no idea when I'll be able to get the bone scan and especially the MUGA. I'm waiting to hear from my onc's office on what will happen now. They are trying to see if the hospitals might still be able to do scans. Sigh. I just want to get on with it.

Nancy - so glad your scan was clear!

Welcome everyone else.

Cynthia

so, i had a CAT scan, a bone scan and an echocardiogram. i wonder why i had a CAT instead of a PET, and an echo instead of a HUGA or MUGA?
anyway, everything looks good in regard to those results. i'm her2/neu negative, so no herceptin for me.
i'm scheduled to get my port monday -- does it hurt? do they put you under? that week is spring break for us, and i don't want to be under the weather....
my onc has a heavy Swiss accent, but what he said, i think, was that i would go on aduramycin (entrocycline) and taxine. does that sound familiar to anyone?
i also need a biopsy of the right breast cuz they found something there, too. yeehaw!

Thanks for that info Marsha....I get mine on Friday and it will be sedation not general anesthesia. Just one more hurtle we have to jump through on this journey.

Hi playwriter - I'm not having a MUGA, either. In fact, she's relying on my echocardiogram from last month. When I asked why no MUGA, she said I was young and healthy with no history or risk factors for my heart and if I really wanted to go through one, she'd order it. Uhm, no, that's okay - if you're cool with it, and I can avoid a procedure, I am waaaay cool with it, too.
Good luck on Monday - the port should not keep you from enjoying your Spring Break - it'll just be very tender.
Lisa

I also had what they call sleepy sedation with the port, I don't remember anything at all. You'll be a little sore a couple of days after, but didn't keep me down. It is a quick procedure, in and out in no time. Taurie, your mom sounds like mine.

Barbkirk, you sound like such a sweet caring husband, she's very lucky to have you by her side. I wish there was some place that significant others can communicate, I know my husband feels lost through all this also.

Well, going to do some drugs and try and sleep tonight, if I dont have to get up and pee 100 times. I drank more water today than I have in a long time. I'm already sick of it.

Tomorrow's dance #1 ..... I'll check back with everyone as soon as I can.

Hugs to everyone !!!

Linda

Quote:

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I've been waiting to have my scans approved by the insurance and I finally got a call today from the imaging place. You're not going to believe this, lol. She told me that they and all the other imaging places were told to stop doing nuclear scans because there may be a problem with one of the solutions they use.

Cynthia

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And I just had the MUGA yesterday. Sigh.

Congrats on the clear PET scan, Nancy, and thanks for the good wishes.

taurie, I'm having the same experience with the port that the others have had. I would just add be sure to keep an ice pack on afterwards (30 mins. on, 30 off). It really makes a difference as I found out when I stopped.

11 1/2 hours to go, but who's counting? I'll be thinking of you, Linda.

Night, all.

It's a MUGA love...and it's quite straight forward. They take out a little tube of blood from your arm or top of your hand...send you to wait for 30 minutes while they mix it with radioactive isotopes and then re-insert it in the little thingy majig(heparin lock) that they left in your arm or hand and then (while you are fully clothed in your street clothes) let you lie on a lovely table and meditate for two 15 - 20 min intervals and a camera takes 'pix' of your hear function... Because Adriamyacin is cardiotoxic they need a baseline to see what kind of function you have before the onset of the lovely chemo treatment.....

I start chemo on Friday and am scared (are we allowed to swear here??)SHITLESS...

LOVE to YOU chiquita!! You dance one day before me...I will follow your steps...make them light and lovely...

Hugs from Holly

WOW!! What a great cruise this will be. You all have posted so positively--GREAT!!! Can some of us "oldbies" help steer your ship???? The cruise you begin will be interesting--you'll laugh a lot and you'll cry a lot, but you will be amazed after your trip is over--many friendships will be forged during your cruise. And, you will be able to steer others' ships!

huggggsssssssss to you all!!!!!!

junie (IDC, lump, ax node 16-neg, A/C, rads, Tamoxifen...just finished my 5 yrs Tamoxifen......quite the trip!)

Here is a updated list, (I hope its right this time)
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,
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 + T, start 3/15
13. Pmarsh34, NC, TAC
14. Marsha2664, A/C + T, start 3/5
15. BarbKirk, A/C, start 3/12
16. LisaDCA, CA,

Well I've been here for months now and finally on the band wagon for the March Cruise. Had to postpone starting in Feb because hubby was supposed to have heart surgery which has been postponed for 6 mos. I'm back on track now and will begin on 3-14. 6 rounds of Adriamycin/Taxotere/Cytoxin.
Here's what I've learned being here the past few months.

To keep down the mouth sores or thrush use Biotene Toothpaste and mouthwash. Suck on ice during infusion and eat popsicles or smoothie drinks.

To help with the bad taste use flavored waters they seem to be the best. Not sure about the carbonated ones.

Usually the nausea doesn't hit right during or after chemo. Can take 4-5 days to a week before you notice anything. Make sure you take your meds wether or not you have symptoms because if you don't and it hits you they usually won't work.

When you don't have much of an appetite make Protein Shakes to help keep up your strength.

Try scheduling your chemo during the week rather than a Friday because if you get any side effects you won't have to wait till Monday to contact the onc.

Ports- It's normal for them to be sore like a bruise. The neck ones seem to be more sore and sensitive.

Friends and Family- Most of them will go south for the winter while you're going through your treatment. Nobody seems to know why other than maybe they think we'll rub our cancer off on them....lol

Rude Comments-Don't ya just love anytime you mention something about your cancer friends and family members tell us all their great stories about other people Climbing Mt. Everest in 8ft of snow and bungee jumping off of bridges all the while doing chemo....oh and don't forget they didn't loose any hair either.........hehe. Tell them to go take a flying leap and get with the program.

Hats-Here's a great site for headwear during chemo.
http://www.headcovers.com/ I stuck with the basic black and white ones and can change the scarfs with them if I want. Bought a bunch of used scarves on Ebay and just washed and ironed them.

Wigs-Human Hair wigs are much more natural looking but cost a lot more than synthetic. However human hair wigs after washing must be restyled each time. Synthetic wigs are much cheaper and after washing just have to be shook out and they keep their styles. You can also take them to the beauty shop and have them trimmed for your face.

Meds-Don't try to be a martyr. Take the meds!

Sleep-Ah yes sleep. Like we're getting any of that right now. There are tons of things the Dr. can prescribe or even Melatonin and other natural remedies for the lack of sleep, although nothing I've tried as yet has worked for me.

Chemo Pack-Pack a bag and be prepared for your lengthy days of chemo. I'm taking a DVD player and movies, puzzles, games, books, blanket, and half of the house with me including ice chest with drinks and food. (My chemo is about 7 hours long). If I feel like sleeping I'll do that too.

I'm just going to expect the worst and hope for the best. That's all any of us can do. I'll be there to help you through your pity parties if you help me through mine...hehe A year from now most of us will be back to our normal lives and this will all be a bad memory.
Here's to some great cocktail days and a lot of dead cancer cells ladies.
Angel

Angel -- Great summary post!! Guess I'll bring that blanket just in case. Thanks for the link to the headcover site as well. I've already bought a grossly expensive -- but cute -- human hair wig, but I've been reading about women having very sensitive scalps and not liking to wear the wigs. So I think it's time for some online headgear shopping.

So sorry you have to go through this when you're also coping with your husband's heart condition. ((hugs))

Holly, hang in there, girl!

Leaving in an hour and 15 minutes -- but who's counting?

Max

Wow, all of us lucky people getting to sit around and have cocktails injected. Don't even have to raise a glass!! I heard the dumbest thing yesterday. My boss said she would gladly trade places with me because what I was going through was easier than what she was (everyday life!). I gave her a couple of chances to recant but she told me the same thing three different times. She needs our prayers, too. But on a much brighter not, here is a GOD thing.............
I was sitting in my recliner at 9:15 last night when my doorbell ring. My youngest daughter (7 years old) went to the door and her older sister (11 years old) was about three steps behind her. By the time the oldest got to the door, the visitor was gone. My baby handed me an envelope that said, "Ms., I don't know your name but God wanted me to give this to you." Inside was 10 $20 bills. My daughter didn't know the woman but I can guarantee you, she had the heart of Jesus! I hope that others can see God as clearly as I am right now.

THank you, Angel, for that list!
I am thinking of our sisters who at this momnet are getting their first infusions. {{{BIG HUGS}}}

But now I need some help from you all.

I met with my oncologist for the first time yesterday, ostensibly to finalize treatment plans. I participate in a large HMO (Kaiser) and my options are limited.
She's cool, and I like her. BUT. Her proposed treatment is/was the typical that would be prescribed for a single-tumor, node negative, hormone-positive, no-BRCA patient. She went straight by the 'book' (Adjuvant Online)- the chemo she proposes (simply A/C x4) will only give me a ~10% increased chance of survival over doing NOTHING. She ordered no scans, no MUGA tests, nothing but a basic blood test prior to treatment. No shot of Neulasta on the day following. All of these things are routine at Cancer Treatment Centers. Being in Kaiser is really a drag right now.
But I waited a month to see her so WTF am I supposed to do? I am currently scheduled to start on 3/13.
She has said she will add Taxotere to the cocktail if it's what I really want. She will go dose dense if it's what I really want. But that both of these add only a few percentage points in survival. Well, - if we're only talking 10%, then 3% increased survival would be an increase of THIRTY percent! I just don't want the typical - I want a program designed for my cancer, my situation. She's never had a BRCA pt. before and says it really makes no difference. WE know it indicates a far more aggressive tumor and poor outcome. She's basing everything on the fact that I was node neg. Well, a finer reading of my path report shows angio-lymphatic involvement present in my larger tumor. She had to look at my report - obviously this had escaped her first reading. Some authorities say that has the same impact as three positive nodes.
Again, she is going to take this to the tumor board and see what they say, and she is willing to do what I want. But I'm not a #*&king oncologist! I need an expert.
It is my understanding that using a taxane (either Taxol or Taxotere) is the standard of care, even in node-neg. triple neg. patients. Am I wrong? What about dose-dense?
I'm just really not a happy camper/cruiser right now
Thanks for your help, buddies!
Lisa

Max,
I've heard the same thing about the wigs as well. I know some use scalp caps of some kind for comfort but havn't picked up one personally. Also I'm thinking they'll be pretty hot with the warm weather coming up on us. I picked up a synthetic one as well that has a lot of airflow going through it because of the heat here.

Holly,
Are you doing the A/C & T all at the same time like I am? I know most do like 3-4 rounds of one then move on to the next one. I've only found 2 others here that are doing the same ones as I am but not sure why. I picked this one because it was the most agressive of the 3 choices for my bc and wanted to also avoid the Taxol at all cost if I could, although who knows I may regret that in the end too.
Angel