The Chemosabe March Cruise
Comments
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Cynthia - like everyone else is telling you, it is very important to be proactive with you anti-nausea meds and let the nurses and your doc know how bad you are suffering so that they can make adjustments! I have a anti-nausea regimen that I adhere to for days 1-4, as the PA at the office gave me a "cheat sheet" when we did chemo-training.
Ask if they give you something in your IV prior to infusion. On the day of infusion I get Aloxi and decadron in my IV, take Emend orally, and then Kytril at 8pm. On Days 2 and 3 I take another Emend plus decadron in the morning and Kytril again at 8pm, and on Day 4 another dose of decadron in the morning. On top of all that I have Rxs for Compazine and Ativan that I can take every 4-6 hours as needed, and if I even feel slightly queasy - I take the compazine. Finally, the doc recommended taking over the counter Pepcid AC or Prilosec everyday for heartburn.
I know it sounds like a lot, but even with all that I feel slightly queasy, so I know you must really be having a hard time and I hate to hear that! So please ask your onc. about the Aloxi, and don't be afraid to take your meds - they will give you some more!!! Also, try to sit up especially after eating and have something carbonated and caffeine free to drink nearby - like ginger ale or seltzer water.
I hope you are feeling much better today.
Steph -
Hey, cruisers -- reporting in from the day after Tx2.
First I saw the onc doc and found out that my MUGA score was good (69) and my CT scans were clear, so big phew on those two.
I asked him about why there was no brain scan done because I knew some others had had them, and he referred me to two publications -- the American College of Oncologists guidelines and another from another independent group. They were interestings links, and I'll post them later for my fellow research geeks when I have the energy to get up and dig them out of my purse.
The onc nurse switched me from Anzemet to Emend this time to see if it would work better, but I'm actually a little worse. More gurling, burping and hiccups this time. I couldn't eat as much ice during the treatment (A/C) because it tasted vile! :P I know I'm not drinking enough so I've got to push on that.
I felt OK for a couple of hours after treatment, so I went to get my buzz cut. I found out my younger son gets his headshape from me, so we could do matching Mohawks sometime. I've been coloring my hair for about 6 years so the amount of grey hair was a bit of a shock. They trimmed up my wig and I wore it home, but now I'm wearing a night turban just to keep my head warm. Got a couple of cute hats, too.
Nancy -- I'm 57, too, but my next birthday is in April
Too whipped to do shoutouts right now, but wishing everyone the best. -
ah ladies....I love waking up and checking in with you all first thing in the morning (CA time!!) makes me late for work every day and I think to myslef...what are they going to do...FIRE the cancer lady!!? NOT!! The hair on my head is still not moving yet...my arms and legs are nude and my pubes and falling out faster that I can keep up with them...I am so going to appreciate NOT spending money on brazilian waxes for a few months!! Going in to work this morning for a few hour before chemo, dragging my sleepy son along and got the EMEND and Lorazepam near by....hoping for a smooth sail...predict a tough weekend...but hey - I NEVER laid on the couch ALL weekend before - time to start developing the soul of a slacker. Anyone else totally undone by Elizabeth Edwards recurrence? Anyone else interested in talking about the WINS dietary protocol to reduce risk of recurrence for triple negatives??
Time to hop in the shower...and gear up for the day...loving all of you... -
Hello ladies!
Well just returned for the onc office. Started running a fever yesterday - went as high as 102.9 - must say I feel pretty bad...kinda like I have the flu. By blood count is falling...falling ...falling. They did give me a n shot to help boost my counts. Told me to stay away from everyone....so now we have a beautiful weekend with flowers blooming and I be inside. Oh well better than in the hospital. Don't know if this will change my chemo....I sure hope not.. I just want to get it over.
Day 11 after first treatment - not losing hair yet...
Cynthia - take your anti-nausea meds....do not suffer!!!!
Maxgirl- my next birthday is in July.
I wish I could write more individally but just need to go lay down. Here's wishing all smooth sailing!
Yes Holly, the Elizabeth Edwards recurrence is terrible. I just completed her book last week. She is a strong lady...
Cheers Ladies,
Nancy -
Hi Everyone,
Had my first chemo this past Wednesday. Taxotere IV plus oral Xeloda for 14 days. They had me on steroids for the first three days which amped me out a bit and now that I'm off them, I find I'm a little tired, but okay otherwise. They say this regime isn't as bad as the AC which I may get after surgery in June.
I check in for my blood draw next Wed the 28th and head out for Hawaii with my hubby and 3 boys on the 29th for Spring Break. My only warning from the onc was to try to stay out of public pools and spas and stay away from the alcohol - what, no pineapple martinis? ;-( I get back just in time for the second round of chemo, but this trip could not have come at a better time.
So, Aloha! -
Spoke with my mom this morning. She has lost most of her hair and it has been exactly two weeks since her first dose of AC. Her diarrhea is better but her stomach is still a bit unsettled. Her next treatment (2nd AC) is on March 30th. (A/Cx4, Tx4, neo-adjuvent, started 03/09, stage III B ILC )
I told her about all of you barve and beautiful ladies on this forum and she was saddened but encouraged by the fact that she is not alone in this.
I also want to thank all of you for your strength and courage .... and for your posts. I visit these boards everyday, multiple times, and take strength from all of you.
This too shall pass!
Healing Hugs,
Maliha. -
3boysforme - it's really great that you are up to a Spring Break vacation with your boys! My oldest son is also on break that week and he is disappointed that we won't be able to go on a trip as we had planned because I am on dose dense AC every 2 weeks. I will have just received treatment #3 on 3/29 and will be way too tired to travel. Hopefully, we can reschedule our plans for this fall - we want to come out to San Diego and do Disney, LegoLand, the Zoo, etc.
Just out of curiousity, how old are your boys? I actually have two boys myself, ages 3 and 7. Well, have a great time in Hawaii, and be sure to take it easy.
Steph -
Been back to work but thought I would check in with everyone. Feeling fine, but my WBC are up past normal range 16?? Don't know whats up with that, hope it doesn't postpone next treatment, which is next Thursday.
Holly Hopes, I'mm interested in the WINS dietary protocol also. What information have you heard?
Cheers everyone,
Linda -
Thanks, you guys for the info on thrush...my onc called in a prescription last night and it's already better. I don't know if it's the Magic Mouthwash that some of you have had, cuz the label on the bottle just says "Gross Cocktail!" (I would have preferred Jack and Coke)....It's thick and pink and truly gross, I just swish and swallow...UUGGH!!!
Cynthia - I agree - take the KYTRIL!!!! Stay on schedule with it, even if you think you might not need it..Hope you feel better soon, I know that it sucks.
Holly - I, too was bummed about Elizabeth Edwards, and am interested in the WINS dietary protocol. I'm thinking about you today, cruising with your son. I'm hoping that you have smooth sailing.
Wishing everyone a good and/or better day,
Marshabel -
Back from the Onc and my MRI was clear!! Woo hoo!!! I was so stressing about that! Also got my 'sailing' date. It'll be March 30th, 8am. Glad to finally get started so I can get this over. If all goes well, June 1 will be my last. (4 sessions of T/C, three weeks apart).
After reading all the fabulous info here, I'm not too awafully scared. Apprehensive about my first, but not really scared. I'm so glad to have this place to go to. -
Hi All,
Here to join the cruise!
I have been on this board since I was diagnosed in December. Had a mast. Jan 23 (after a trip to Hong Kong & Singapore), Chemo port late Feb, then was to start chemo on March 3 when it was cancelled only hours before so I could have gyno surgery (grrrrrrrrr--frustrating).
Started Chemo finally 3/16. Dose dence AC 4 TX every other week then Taxol, 4 TX every other week. Tumor was 2 cm; multifocal (two other tumors under 1/2 cm) ER+/PR+; Her-2-neu-; 4 positive nodes. Radiation yet to be decided; had a tissue expander for reconstruction.
My first chemo was worse then I was prepared for. Had the infusion Friday (drove home in a miserable snow storm) was immediately sick (vomiting) Sat AM. Things got worse through Thursday. Very sick, unable to eat except tea & toast, and very sleepy. MD thinks dehydration was part of it--but I was too sick to drink. Took about 6 diffferent anti-nausa drugs. Plan next time is to go in for an IV. Has anyone done that?
My question today is about bone pain from the neulasta. I have had a really bad low back pain and sternum pain today--7 days after the neulasta. Somehow I thought that side efffect, if you get it, comes earlier? Any ideas on what helps, besides tylenol? Heat/cold/ hot bath?
Thanks for your help in advance, Jody -
Did my first AC treatment today. They gave me some meds for the nasuea, then the chemo. Was a little overwhelmed by it all. Doing pretty good so far. Hoping for the best.
MissShapen: I want to thank you for all your help and support. I am glad we found each other. Will be thinking about you on Tuesday. Hope all goes well for the port placement.
I wish everyone else good things. Sorry we all have to be on this cruise, but at least there are a bunch of good people to help each other.
I have been reading all the posts. They have been helpful. Thanks. -
Jody , try taking Alieve for the bone pain. u only have to take it about every 12 hours. i had my neulasta shot today, and the onc nurse told me to take whatever pain killers i had around the house. i said i had vicodin left over from the lumpectomy and the SNB, and she said to take those if i needed them.
first day after the tx. head hurts, eyes burning, stomach kind of meh.
7 YO came home from school and siad "you still have your hair!" i guess she thought the hair would fall out right after chemo.... -
Kennie, Canada, 3/1
stephj, 3/1
Refugee, NeOH, A/C, start 3/5, 2nd tx 3/29
Marsha2664, A/C + T, start 3/5
bugs416, VA, (her mom started sailing 3/6)
LindaDK, KS, T/C, start 3/8
Maxgirl, Maryland, A/C + T, start 3/8
Holly Hopes, CA, A/C + T, start 3/9
Jillrush, Louisiana, A/C + T, start 3/9
BarbKirk, A/C, start 3/12
GrammyNancy, GA, TAC, start 3/13
LisaDCA, CA, start 3/13
BettyeE, Mississippi, T + FEC, 3/13
Marshabel, TX, A/C + T, start 3/14
Angelflight,CA, TAC, start 3/14
Pmarsh34, NC, TAC, start 3/14
zigzag,OH, T, 3/14
JacqueN, Nebraska, 3/15
jfsnh (Jody), NH, A/C+T, 3/16
Cynthia1962, CA, A/C, 3/19
DMKNancy, PA 3/20
whitecotton, Canada, 3/20
Rosebud1962, MI, 3/20
Misshapen. AC+T, 3/20
Paula37, CA, 3/21
Playwriter - (Terri), TX, A/C + T, start 3/22
musicmom3 - 3/22 clinical trial
misK, PA, AC, 3/23
onlygirl4, carboplatin, T, herceptin, sailing postponed
1stlite, MT, A/C + T,3/29
Fireba, NY, 3/29, AC+T
diamonds48, OR, 3/30,TCx4
JannM, WA, T/C, 3/30
Taurie,- FL, A/C + T, STILL waiting for sail date
34! let's pray our cruise is full! we don't want any other precious ladies to have to go thru this hoohah.
http://chemogirlspeaksout.blogspot.com/ -
PLAYWRITER: They said not to tke any ibuprophen or aspirine--that it decreases platelets (sure I spelled that wrong). Willpick up Alieve tomorrow and see if it is OK. Thanks! I do have vicodan too, but usually ibuprophen works better for me on this kind of pain.
Don't let my experience scare you! My doctor says it should not be this hard. If I have it harder then average, I hope you have it easier then average, someone has to if the avaerage is to be maintained!
Thanks for keeing the cruise list. Good luck. -
Hi, March Cruisers, I started chemo in February so I post there but I just wanted to stop in and wish everyone well. I cannot believe how many of us are crusing just in February and March...that realization hits me hard...
Steph -- thanks for visiting us. I posted to you on Feb. but here's what I said in a nutshell -- After the tears with my initial diagnosis, I began to feel like a robot on automatic. I didn't feel like I could connect with my emotions. That is why I sought out counseling, because I just didn't feel like me. I was lucky to find one who deals with cancer and long-term illness.
I am lucky in many other ways as well... but I don't always feel so lucky about 3 to 4 days after a chemo tx. Difficult to count my blessings when I am trying not to puke...but then there are days like today Day #11 when I start to feel normal again. Sweet dreams to all of you, as the tired old moon descends... Sybil -
Morning ladies,
I havn't been around the past few days as you've probably noticed. Started the big D a few days ago. Ended up so bad with it I've been hitting the toilet every 15 minutes for 2 days straight. Had to go to the infusion room yesterday and they pumped me full of every med you could think of for Diaharrea, cramping, neasua etc. They put me on immodium along with Lomatil which hasn't done much. My bowels are so irritated it's pathetic. They finally sent me home with some stuff for the cramping along with tripling the doses of Lomatil. That seems to be helping a bit. They said if it wasn't better by this morning to head to the ER which I'm avoiding at all cost. I'm actually able to sit here for a while without hitting the bathroom which I couldn't have done yesterday so I guess it is getting better.
It's funny how most of us had pretty much the same symptoms of the first few days after Chemo then we all seemed to take a nose dive about the same time in one way or another. It's those rough days that make you wonder how much our poor bodies will be able to stand of this crap.
I've been so bad I actually told my hubby yesterday if it continues like this I'm calling Chemo off knowing the whole time I was saying it that it just wasn't an option. I have to fight with everything I have and if the cancer comes back later then at least I can say I did everything I could have to prevent it.
As for the age thing I'm 53 here, look 53 and feel 93.
I'm sending the hubby out fishing today and son off to his girlfriends for the day. I just want to be left alone! Hey the good thing is I've been getting some sleep. Had more in 2 days than in the past 4 months. And my eye allergy I've been fighting with for a year is gone. I finally found the cure for it; it's called Chemo......lol
I actually think most of us will do better the 2nd time around when it comes only due to the fact that we know what to expect this time around and how to curb the bad days and what works for us.
Hey yesterday when I was at the infusion room I was put in a private room with bed, overstuffed chair, private tv etc. I told the nurse I want the private room reserved everytime.......lol Now with summer coming up soon I just wonder if there's a pool close by.......hehe
Good luck to the new cruisers for this next week and hope we all get our bad days under control for next time around.
Love to you all,
Angel -
I hope you all have a great weekend and rest up and pray everyone feels better. It's day 4 for me and I am starting to feel like myself again. I'm able to keep things down so far. My daughter who is 22 came over to be Mom and check in with me. She hadn't seem me since I had my head shaved and all she wanted to do was touch my head...LOL I asked her if she wanted to rub my belly too then I could feel like the Buda I've turned into...LOL Hugs to all..Rosebud
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hey, y'all. i fell yucky today. nauseated, but can't take another Zofran for another 3 hours.
got copies of my medical report and am a little freaked at -- tho my cancer is classified as stage 1 or 2a, depending on who u talk to, it scored 9 on the Bloom-Richardson scale, with an MIB-1 proliferation rate. So, I have a high chance of the cancer coming back. -
Angelflight - so sorry for your problems with the big D, and hope that you feel better and can avoid the hospital! I had it for a few days, but it got better. The only thing that seemed to not irritate my stomach was potatoes: mashed, fried, stewed, tots, baked, etc. Go figure!! It sounds like your case is much worse than mine was, though....Watch out for thrush, because as soon as the D stopped, I got it. Use your Biotene! This is day 10 for me, and besides the thrush, I actually feel pretty normal - YEAH!
Playwriter: Sorry you feel so yucky, too. About your medical report - I didn't see anything on mine about the Bloom-Richardson scale. Does that have anything to do with the KI-67 grading? I know that mine was 92% which indicated very fast growing and aggressive. (My onc said that normal percentage was 15-20%.)
Hope you all feel better soon.....
Marshabel -
Playwriter, I have been having horrific headaches so I discontinued the Zofran. I don't know what is making me feel so bad. Ask your doc if you have have phenergan for breakthrough nausea. I hope you feel better soon!
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It's so great to be sailing on this big love boat with all my sisters! I am 47, and working hard on planning my husband's big 5-0 in May - I think he'll be surprised since he thinks I'm kinda preoccupied right now - little does HE know! Chemo on Tuesday went well - AC - have had MINIMUAL side effects, if any, really so far! Insomnia and lazy as hell, but no nauseau or any of the stuff I was dreading. Have been on Emend, and the Neulasta has not been a problem. My family Dr gave me some sleeping pilss whose name I can't recall right now (Lunesta! That's it!)and Onc said ok to take so got at least 4 hours last night. I too have been keeping a journal of what I take each day and how I feel, just because there's too much to remember and I don't want to OD myself! I guess I should try the senekot just to keep things moving. I went shopping alone 45 minutes away after the Neualasta shot and went to pick up my wigs yesterday, but had a girlfriend drive me there. I am writing this as my precious granddaughters nap - waiting for Mommy to come home from work, then get ready to leave to go the Cancer Treatment Centers of America in IL (we're in PA) to join her husband and mother in law, who are with her father in law in final stages of lung cancer. Unfortuately this trip to IL 2 weeks ago did him in and we are afraid he will not survive a flight home to be with the rest of his family....he was DX'd 1 week before me (12/22/06) and has had a horrible time of it. There is a private jet available to bring him home but medically he can't take the trip. He is 48 and has a 13 year old son, 25 year old 7 month pregnant daughter and my son in law who will be 28 on Monday. His granddfather (Dad's father) died 2 years ago on his birthday, so I pray he does not have to have another birthday like that. You are a compassionate group of caring women, and I ask you to remember them in your prayers. I am so worried about all of them, and it makes what I am going through seem so easy.......
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Wow, dmknanny, i am so sorry for all your family is going thru now. i pray for peace for everyone involved.
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Hi steph_j,
I have 3 boys (17, 13 and 10). They're taking this all well, but I think the rough patch is yet to come - like this summer. But all will be well in the end.
You'd love San Diego - hopefully you can schedule a trip out with your boys at some point - they'd love it!
Keep well,
Lisa -
Add me, add me. Taxotere and Xeloda - started 3/21. So far so good. A little tired, but that's about it.
Lisa -
DMKnanny, I am so sorry for the journey your family is on. You will all be in my prayers. May the peace that passes all understanding be with your family.
{{{{{{{{{{{HUGS}}}}}}}}}}}} -
DMK I'm so sorry for all your family is going through. That's really rough. I'll keep you all in my prayers.
Angel: Hope you get some relief soon. I hate being house bound like that. (Different story when you want to be house bound.)
Playwrite: hope the zofron helps when you can take it. {{{{{hugs}}}}}
Just got my perscriptions filled for Friday. Getting a bag ready later this week. Hope everyone has a great weekend with no SE's to work through. -
dmknanny , sending hugs and prayers to you and the rest of your family. I'm sorry you're all having to go through such heartache.
I hope everyone dealing with rotten side effects will be feeling better soon-
Holly here's some interviews with MD's about the WINS study -
http://breast.cancerqanda.com/interviews...ckedONfrom=page
http://breast.cancerqanda.com/interviews...ckedONfrom=page
The breast.cancerqanda.com website has a lot of audio interviews which can be listened to/downloaded.
Sheri -
Kennie, Canada, 3/1
stephj, 3/1
Refugee, NeOH, A/C, start 3/5, 2nd tx 3/29
Marsha2664, A/C + T, start 3/5
bugs416, VA, (her mom started sailing 3/6)
LindaDK, KS, T/C, start 3/8
Maxgirl, Maryland, A/C + T, start 3/8
Holly Hopes, CA, A/C + T, start 3/9
Jillrush, Louisiana, A/C + T, start 3/9
BarbKirk, A/C, start 3/12
GrammyNancy, GA, TAC, start 3/13
LisaDCA, CA, start 3/13
BettyeE, Mississippi, T + FEC, 3/13
Marshabel, TX, A/C + T, start 3/14
Angelflight,CA, TAC, start 3/14
Pmarsh34, NC, TAC, start 3/14
zigzag,OH, T, 3/14
JacqueN, Nebraska, 3/15
jfsnh (Jody), NH, A/C+T, 3/16
Cynthia1962, CA, A/C, 3/19
DMKNancy, PA 3/20
whitecotton, Canada, 3/20
Rosebud1962, MI, 3/20
Misshapen. AC+T, 3/20
Paula37, CA, 3/21
3boys4me, CA, T + Xelada, 3/21
Playwriter - (Terri), TX, A/C + T, start 3/22
musicmom3 - 3/22 clinical trial
misK, PA, AC, 3/23
onlygirl4, carboplatin, T, herceptin, sailing postponed
1stlite, MT, A/C + T,3/29
Fireba, NY, 3/29, AC+T
diamonds48, OR, 3/30,TCx4
JannM, WA, T/C, 3/30
Taurie,- FL, A/C + T, STILL waiting for sail date
35! let's pray our cruise is full! we don't want any other precious ladies to have to go thru this hoohah.
http://chemogirlspeaksout.blogspot.com/ -
Playwriter - thanks for keeping the Cruise roster current; I just updated my location and treatment. --Steph--
Kennie, Canada, 3/1
stephj, Maryland, A/C + T, start 3/1
Refugee, NeOH, A/C, start 3/5, 2nd tx 3/29
Marsha2664, A/C + T, start 3/5
bugs416, VA, (her mom started sailing 3/6)
LindaDK, KS, T/C, start 3/8
Maxgirl, Maryland, A/C + T, start 3/8
Holly Hopes, CA, A/C + T, start 3/9
Jillrush, Louisiana, A/C + T, start 3/9
BarbKirk, A/C, start 3/12
GrammyNancy, GA, TAC, start 3/13
LisaDCA, CA, start 3/13
BettyeE, Mississippi, T + FEC, 3/13
Marshabel, TX, A/C + T, start 3/14
Angelflight,CA, TAC, start 3/14
Pmarsh34, NC, TAC, start 3/14
zigzag,OH, T, 3/14
JacqueN, Nebraska, 3/15
jfsnh (Jody), NH, A/C+T, 3/16
Cynthia1962, CA, A/C, 3/19
DMKNancy, PA 3/20
whitecotton, Canada, 3/20
Rosebud1962, MI, 3/20
Misshapen. AC+T, 3/20
Paula37, CA, 3/21
3boys4me, CA, T + Xelada, 3/21
Playwriter - (Terri), TX, A/C + T, start 3/22
musicmom3 - 3/22 clinical trial
misK, PA, AC, 3/23
onlygirl4, carboplatin, T, herceptin, sailing postponed
1stlite, MT, A/C + T,3/29
Fireba, NY, 3/29, AC+T
diamonds48, OR, 3/30,TCx4
JannM, WA, T/C, 3/30
Taurie,- FL, A/C + T, STILL waiting for sail date
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