The Chemosabe March Cruise

playwriter

nurse said something about neulasta, but i don't know whether i'll be unjecting it myself or going in to the ofc.

marshabel [b/]- sorry to hear you've had a rough time of it. love and prayers to you

lisa -- that SUCKS about your bosses. way to be supportive, bosses!

don't know what other threads y'all read, but this one made me laugh: the posters were having a discussion about whether a condom is necessary when you have sex while undergoing chemo treatment, and one poster said, "Why would you need a condom? Couldn't he just wash his hand off afterward?"

Anonymous

So THIS is where everyone is! The topic made me think a bunch of bc survivors were going on a cruise to Mexico and I never read here until AngelFlight posted elsewhere and mentioned it! DOH!

I will be joining THIS cruise on Tuesday. I went for my MUGA today (ended up getting an echo), and will get my port on Monday. I'm a little nervous about how sore it will be after only one day, but oh well.

I'm getting DD AC X4, then DD Taxol X4. I'll be starting weekly Herceptin when I start the Taxol, as well. I'll stay on weekly Herceptin all through 33 rads. Once radiation is over my Herceptin will go to every 3 weeks for a year.

This has been one crazy ride for me. Many of you may already know my story. I was diagnosed with DCIS w/microinvasion last November. After 4 breast biopsies (with all the accompanying mammograms and ultrasounds) and a breast MRI, I was finally scheduled for a lumpectomy on Jan 3, 2007.

Pathology from that surgery showed my DCIS was wider spread that thought and I had two tiny points of invasion. The doc said I would need a mastectomy, but the good news was I could skip the rads that were planned and I wouldn't need chemo either. My mastectomy was Feb. 7, 2007.

I didn't have to wait for a pathology report to get the bad news from that surgery. That same evening the doc told me she found at least 5 lymph nodes that had cancer she could see and feel. She was shocked. The pathology report showed that I ended up having 7 positive nodes in the end.

So I went from having DCIS to Stage IIIA. Total kick in the stomach and so unexpected.

At any rate, I am getting chemo AND radiation. LOL TO add insult to injury I had to be pr/er - and Her2/neu+++!

However, the bad news ended there. My scans (Ct scan, bone scan, PET scan) came back clear except showing something wrong with my thyroid. A thyroid biopsy showed benign!

I have been up and down and all around. I have not slept well since the mastectomy. The Lortab for pain was giving me anxiety so I stopped even thinking about taking a Lortab. I do have Ativan for any anxiety and to help me sleep.

I have already filled the RX for my nausea meds and all I have to do now is decide who to ask to take me to my chemo treatment. I live alone and I don't want my son to have to take a day off work, as he just got a promotion and is settling into his new job.

I am so happy to know I have all you lovely ladies taking this trip with me. I feel so much better now. You guys rock!

taurie

Well I spent 6 hours in the emergency room and am no better but feel a little more secure about my heart. I went to the oncologist and he said I should go to the emergency room. So did my surgeon. They were worried about a blood clot or a heart attack. They did an EKG, gave me baby asprin, CT Scan with iodine, blood work. Heart is fine, no blood clots, said its severe swelling where the tube goes into the artery for my port. Gave me stronger pain meds and sent me home. Still dont have a cruise date cause oncologist said he wanted to see what happened at the ER first. Also said if they did that CT Scan I might not need a Muga. So we will see today what the new recommendation is.
Dawn

GrammyNancy

Good Morning Ladies!

Angel, I'm so happy to hear that things went well for your today and you even played hostess! I think it is just a relief to have is started and know how our bodies will react. I'm still feeling pretty good.

Marshabel, happy that you have one behind you. I had read another thread somewhere that if you took 3 tynelol when you sat down in the chair to start chemo that it really helped with the headaches...might be something you want to ask your nurse if you could try.

Welcome new members to the club that know what ever thought they would be joining.
Miss Sharpen...the path you traveled to get here must have been very hard...but it looks like you are on the correct path now with a plan. Good news on your scans.
Paula, sounds like you have two wonderful children...hang in there!
Melissa and Rosebud, welcome we have staterooms set aside for you!

Taurie, I'm so happy that you went on to the emergency room, sorry you had to spend 6 hours there, but good news on the CT scan. Hope the new pain medication helps and that you get a sail date soon!

Hope everyone has a good day!
Nancy

pmarsh34

It seems like that once I was diagnosed with breast cancer, everyone I meet has it or knows someone who does. I hate that everyone is coming on this cruise. I wish it wasn't even really sailing. But since it is, I am so grateful that you are all going with me. I am not sure about going back to work yet. My boss says she is understanding but I am not so sure about that. I think I may tell her I have to work from home and won't be able to drive to the office. It's 40 minutes from my house and if I am not feeling well, I don't think I will be able to handle it very well. If I work from home, I won't be wasting my feel good time driving. Sounds like a good rationalization anyway.
Good luck with everything, Taurie. This is crappy enough without having the extra side effects.
I hope I do as well with the chemo as most everyone else seems to be. I am having a difficult time eating already and I am not on any medication!

Primel

Glad things went so well, Angel flight... Take it easy... I am in the February Chemo cruisers, but we are all in March now... had my #3 AC+Avastin and so far so good on day 3. I am amazed that we can even stand on our feet with the crap they infuse... It is interesting to see all the variations in pre-med, infusion times, etc. I take Emend before leaving for the cancer center and put the lidocaine cream on the port. There, they hook saline (32 ounces), then pass Aloxi (anti-nausea supposed to last 72 hours), Decadron, then Adryamycin (takes time... at least 30-45 minutes in the drip chamber), then cytoxan, very slowly to avoid headaches+ sinus stuff (although runny nose and congested sinuses have been with me for weeks, now... they recommend claritin... did not try yet), then comes the Avastin (clinical study part). At home I take Emend on days 2 and 3, then I have Kytril for daytime nausea (did not need it so far, ever, have been queazy afer #2, but not worse than that), Ativan at night (works great for me). Today should be the worst day, and tomorrow, because of Neulasta, but usually Tylenol does the trick against bone aches (they say claritin helps with that too). I am amazed that this first full month (since feb. 13) has been mostly normal (took one nap only, never felt fatigue yet... walked 3-4 miles everyday, weather permitting, with my doggy). So indeed, we are so scared by the process, but those premeds help... hopefully it will last till the end...
Wishing you the very best Angel, and to all of you the March shipmates... don't forget to read the feb cruisers posts since we are ahead of you and you may find it helpful...
Have all as nice a day as possible,
CatherineH

HollyHopes

Hi dear ones....I feel like I have morning sickness again...last pregnancy was 19 years ago!! Has anyone asked her doc for an 'herbal' remedy??

marshabel

Thanks everyone, for the kind words. I had a rough night, but finally got a couple of hours sleep, and feel a little bit better today. I think I am going to ask for another sleep aid, because my Ambien (that I have taken for a long time) does not seem to help at all.
Taurie - glad you at least got some answers about your port. I know that must have scared you to death not knowing what was going on. Now they just need to get you some relief!
Lisa - I had two tubes of Adriamycin
Nancy - thanks for the tip to prevent the headache

Did anyone have this symptom - crazy, creepy crawly feeling in your legs, like Restless Leg Syndrom? Maybe from the Decadron?

Marsha

lindaDK

welcome all the newbies, and sorry you had to join us. Today is day #7 for me, I went for my 1st blood count, and my wbc has bottomed out to 1.7, so now I am house bound for the next 5 days. The nurse said it will go down more?? That scares the living day lights out of me!! what happens if it hits 0??

I am now on some big ole horse pill kill-all antibiotic, and I have trush mouth. YUK!!! I have been running a constant temp hovering around 100 since last night. Was doing real good for a few days, finally got rid of the runny's from the taxotere and poof, my WBC bottoms out. Feel like crap right now. Luckily I can work from home which helps keep me sane.

Hang in there everyone, we're in for one hell of a ride!!

lindaDK

Marshabel, I think it is the Decadron also. I had the same thing for the first couple of days. I'd lay in bed and the creepy crawlies made me flop around like a fish !!!
Linda

steph_j

Hi everyone - just checking in after treatment #2 today on my DD ACx4 -- Tx4 schedule. They ran my blood work prior to treatment and my counts had all come up nicely so I was cleared to go - thank goodness!!! I still have the itchy rash around my port, but they were able to access it with no problem. The nurses in the infusion room are the best, as they do all they can to make treatments simple. They gave me saline, decadron, and aloxi in my IV and I took the Emend orally. The nurse pushed the bright "kool-aid" red Adriamycin through with no problem. For the Cyclophosphamide, she ran the drip over an hour and half because the first time they did it over 30 minutes and it gave me a terrible headache, and my sinuses, scalp and eyes were all burning. After it was done she flushed the port, gave a me an Aranesp injection (for RBCs) in the tummy and I was on my way. Tomorrow I come back for my Neulasta shot. I feel much better this time, although I do have a slight headache - took Tylenol. I was even able to eat right away without feeling nauseous!

Tonight I continue the anti-nausea meds (decadron, kytril, and compazine-as needed) for the next 4 days along with a daily dose of Pepcid AC to prevent the heartburn. This time I am going to take a Senokot and a Colase each night to avoid the "bathroom" issues (or rather lack of) that I experienced during the first cycle. I am also trying to drink as much as possible to flush these meds out of my system. As the amount of decadron the give me via IV is high, I am so wired and will probably be up well into the early am hours - last time I only got 3 hours sleep the first night! So I will be frequently checking in on you all! So overall, I feel much better this time than I did immediately after treatment #1. Maybe I was just more prepared for what to expect, but I'll see how things go over the next 4 days.

Other thing - just as they said my hair began shedding yesterday - Day 14 right on cue, but not noticeable yet. I will see how much sheds over the weekend and let you all know when I finally decide to buzz it.

I hope you all are feeling better and hang in there!

Steph

LisaSDCA

Steph - good to hear that the onc. nurses made some adjustments in your treatment administration that kept you more comfortable. You 'sound' terrific!
Linda - sorry to hear of your lo-lo-lo counts and your thrush already. If you have some l-Lysine it can help - cause the heavy duty antibiotics will make it tough to overcome the yeast overgrowth. Do you have any Biotene mouth rinse? Were you using Neulasta or Neupogen?
One reason I'm asking is because I'm trying to find the cajones to give myself my first Neupogen shot right now!

Lisa

steph_j

Marshabel - I did have a similar sensation in my legs, so I went to the gym and walked around the track and rode the bike and they felt better after that - didn't notice it again. I also try not to lay in the bed for too - when at home I periodically get up for awhile and walk around.

Taurie - I'm sorry to hear you had to go the emergency room for the port, but glad to hear that it's not heart-related or blood clots. Did you try putting some heat on your shoulder to help with the pain? I hope your new pain meds help you feel better.

Linda - my WBCs at Day 7 had also dropped down to 1.7, which really surprised me because I was feeling pretty good by then. All of my levels had dropped, most importantly my neutrophils which had to come up in order to get the next treatment. I still went to work, but tried hard to avoid anyone with a cold. By today (a week later) everything was back up most definitely due to the Neulasta and Aranesp shots. Since I have 2 young kids, germs are a given around here, so I also take a multi-vitamin to help boost my immune system. So just hang in there and your counts should recover soon.

Holly - I, too, felt like I had morning sickness for the first few days after the 1st treatment. I had really bad morning sickness with both of my kids, so we kind of expected it. All I can say is that I am thankful for all the meds they did give me because at least I was able to avoid vomitting. I found sipping a cold seltzer water or ginger ale to be somewhat helpful. I hope it subsides soon for you as well!

MissShapen - welcome aboard! I just signed on last week and it has been great crusing with everybody!

CatherineH - thanks for checking in with us. I also check the Feb. group since, I started on March 1st I am ahead of everyone on the March Cruise. I find the information, advise, and support from your group invaluable!

Well, it's time for 8PM meds and I have to take the decadron with food or milk, so I'll be checking in later.

Steph

Nancyab

Omigod! Yes I have that feeling in my legs, can't hold them still! My hubby asks who put the quarter in the bed? I never experienced that before and mentioned it to my DR. She told me to take an ativan. It is very irritating, such an odd feeling. And I'm not the only one who has it woohoo!, good to know. I thought I was going crazy!

maxgirl

Signs you're getting emotional -- Your boss comes in to tell you they're assigning someone else to conduct a training so you don't have to worry about how you'll be feeling, and you burst into tears because they're treating you differently.

Then you throw your boss out of your office because you're embarrassed to be crying.

Oops.

Luckily he's a friend, too, and forgives my beserk behavior.


MissShapen (love the name) -- What a horrible roller coaster you've been on. You sound remarkably sane considering.

Dawn -- Phew -- no heart problems! Glad they found out what was wrong with you and gave you pain meds. Does the swelling have to resolve on its own?

Lisa -- Like Marsha, I'm getting 2 tubes of adriamycin. Mine is on the DD AC+T protocol.

Good luck on taking that plunge!

Marsha -- Ouch on the headache! Hope it clears up quickly. Did you drink a lot of water the day before -- I think someone said that would help, so I did and got only a mild headache.

Angel -- Party on! My chemo place is pretty quiet with each of us in side-curtained places.

Catherine -- Thanks for the info from farther along the chemo path. I was afraid to hope the next treatments would go as well as the first.

Sounds like you and Linda both have regular blood work 7 days after treatment. Hmmm -- I'm not supposed to get mine until 2 days before my next treatment.

We're all getting so many different anti-nausea treatment plans, and luckily most of them seem to be working well. I'm going to try Tylenol and asking to have a slower C drip to avoid the headache next time.

HollyHopes

Hi Cruisers,

Home today after 6 hours at work. Acomplished about the equivalent of one hour of usual work. I am cranky and whiny....a friend from church had promised to drop by my house while I was at work, clean up a bit for me and leave some soup...all that was waiting was an email message saying that 'something else had come up'. I am trying not to get frustrated with folks...but SH*T. I give myself the Neulasta shot in my thigh and it really does not hurt one teeny bit - I mean it! The worst part is reading the instructions.

Tomorrow I get the bandaged changed on my PICC line. Anyone else out there have one? I won't be getting Decadron till I start the Taxol, why are the rest of you getting it now?

I too had some trouble with constipation (sorry not to be more genteel about the topic) but with tons of water and fruits it solved itself - now I lots of diarhea...so lovely, so lovely...

I am so glad that all of you are out there...wonder how many women around the globe are going through this RIGHT now?? Hmmm...guess 1 in 8!!

Love you all to bits...gentle hugs from Holly....

Keenie

Hi everyone,
I was posting over at the other board, too! So, I'd be happy to join you guys! I'm on Day 15 after first AC treatment. I had a pretty rough first week, reacted to Decadron (turned red) and found the antinausea med made me very restless. I'm going for bloodwork on Mar.20 and hope all is ready for my next treatment on Mar. 21. I'm having 3 more cycles, every 3 weeks, and then on to radiation.

Did anyone have any blurry, crazy eye problems with their AC?

God's rich blessings to all who are here!
Keen
IDC dx Dec 06 1.5cm no nodes ER+ HER2 neg Stage 1 Grade 2

whitecotton

I go to chemo class on Monday and they will tell me when I set sail. I was told the kind of drugs I will be getting 3x Fluorouracil (or 5FU) Epirubicin Cyclophosphamide
Then 3x Docetaxel (Taxotere®)
Is anyone else getting these?
Also they are not giving me a port. What do you guys think about all this and opinons?
thanks
Melissa

JannM

Angelheart: I find out on the 23rd when chemo starts, but I think it'll probably be the very end of the month. I have an MRI tomorrow and my oncotype test isn't back yet. I see my onc on 3/23, and my MRI and hopefully the oncotest will be back, but they said they'd schedule it for the next week.

Keenie

Hi, Whitecotton,
When my onc and I were talking about options, she indicated that when they are using FEC they use a port as that combo of drugs can be hard on veins. I'm on AC with lousy, little veins, but the awesome onc nurse had no trouble with my infusion. I was wondering if I would need a PICC line or a port. Hope that helps. . . and doesn't cloud the issue for you.
Keen

LisaSDCA

Melissa, that FECx3 + Taxoterex3 chemo plan is a very good one. It's is one I "offered" my oncologist as one I would accept after I spent about a bazillion hours researching.It is a very current combo - proven effective through the PCS01 trial results (if you feel like googling it).
If you feel your veins aren't going to be up for lots of IV's ask for a port. Mine was not offered to me, but I know my veins, so I gently insisted. All the onc. nurses now agree that we wouldn't have had a chance w/ dose#1 without a port.
It took three different techs down in the lab a total of 6 sticks just to get my pre-treatment bloodwork the day before! Never again! I'll just make a special appointment to come upstairs and let the qualified folks use my port!

Lisa
who DID give herself jab #1 of Neupogen today!

Angelflight

OMG!
I just spent an hour here typing stuff to everybody then hit the submit button and as usual it won't enter. So now I've lost everything again. This sucks and frankly I'm getting sick to death of it. Somebody get this function fixed cause my post was packed full of info for everyone here. I give up for tonight.
Angel

playwriter

Angel - sorry that happened. that can be so frustrating

lisa -- so proud of u for taking charge of yr care

am SO frustrated right now. had a appt with onc today. waited TWO HOURS in exam room, and never got to see the onc. i had to leave cuz DD had an allergy dr appt.
nurse called about an hour later, said dr would call me with the results of the pathology, etc. i said, fine, but i'm not sure i'm going to keep him as a dr. so of course he didn't call.
i don't know what to do. show him grace and keep him on, sine we're set to start cruising Thursday, or look for another onc.

steph_j

Whitecotton: My doc actually recommended that I get the port upfront, and although I was hesitant at first, I am glad I did because other than the initial needle stick, it makes the infusion hardly noticeable. I just hated getting stuck in the veins and the thought of having the chemo drugs stuck directly in my arm was not so appealing. My main fear was that my veins would become resistant over time due to the number and duration of infusions. However, I have to admit that the surgery to get the port installed caused some discomfort for a few days until it healed, but in my opinion it's been worth it. One other thing - at my office they do sometimes still do routine blood draws from my arm, just to preserve the port for infusions.

Angel: so sorry you lost your post. The same thing has happened to me at least twice, so what I have started doing is right before I hit submit, I use the copy button on the browser under "Edit" to copy the entire post. Then if I lose it I just go back and paste it all in again. It's just a hassle to remember but after a few times of losing info from a detailed post, it becomes second nature. I'll be looking forward to hearing from you when your are up to it again - hang in there!

Lisa - 6 needle sticks is riduculous! Do they use a small butterfly needle, because that helped me with problems accessing veins. In addition, I now know my one or two couple of "good" veins and point them out to the nurses. You go girl on giving yourself neupogen today - you are a trooper!

On a related topic - IVs - when I had my breast surgery, the IV they put it in my hand hurt almost as the incision itself! So when I had the port placed, the nurse put it in my lower arm and that was much more comfortable.

Well, I actually was able to rest for about 5 hours until now, which is better than the first time. I'll consider Ativan if I'm not resting better by tomorrow!

Steph

jacqniel

I joined the cruise yesterday (Thursday). I had my port placed Wed. This is my second go around - so I have wig at the ready and hats galore. I only received half my chemo -Abraxane - as I had recent surgery, so Avastin will wait until the next time. I also received Aredia - a bone strengthener. I go in today for my Neulasta shot.
I noticed my legs were rather 'noodly' tonight. Had trouble climbing a few steps. Anyone else ever have this?
I fell asleep just fine last night but awoke to weird aches. It started in my ear, then moved to my neck and port area and then to my right chest area and radiated around my back. It came in constant waves. I finally sat up and it eased it a bit. I am now sitting in a comfy chair with my feet up and the symptoms are gone. I am assuming it had something to do with the port.
Boy I hate to join this cruise, but am happy to have company on the journey. Jacque

steph_j

Playwriter, what happened to you sucks! I had a couple of initial problems with waiting due to scheduling, but they were extremely apologetic. The cruise we are embarking upon is no picnic, and you should be extremely comfortable with your doctor and everyone who gives you care. It is their job to give you the best of care, because you don't have to use that practice. I know it is a hassle to switch. If you like your doc, maybe you can discuss how you felt with the office manager, and if she says what you need to hear give them another chance. If not, in consideration of your time, switching while it is still early could be an option, especially, if you have another practice in mind. See if you can get some recommendations first, as you don't want to go to yet another annoying situation.

playwriter

i'm going to try and see another doc on monday. so we'll see. the old one is very close to my house, but like u said, steph, i need to be very comfortable with my onc.

lindaDK

Lisa, what is l-Lysine ? My fever finally broke last night, woke up about midnight in a dripping in sweat!! I still have a slight fever, but nothing like yesterday!

Not to be gross, but does anyone notice the gawd awful smells when they use the bathroom yet? I have to hold my nose or I swear it would make me barf!! Also gas bubbles that feel ike they're stuck sideways? I have enough 'wind' to propel a sail boat !! I think its the Taxotere thats doing this. jeez!!!

Someone mentioned getting emotional, I work for a software CO and we are going thru a major update, switching our tools from TSO to Oracle. Before all ths happened I was on the team that will test the new tools and train the remainder of the CO. I got told yesterday that they are moving me off the team, and I totally understand, theres no way I would be able to keep up with the deadlines, overtime etc. They are looking out for me, but it still makes me feel like a worthless baboon.

Linda

GrammyNancy

Morning Ladies,

Day 4 after first treatment and still feeling ok. Little headache and my face and neck are a little red (don't know what that is).

A couple of tips I've received. Grapes help keep WBC's up. My onc nurse said the onc suggests this but she isn't sure (but what the heck, I like grapes and if you freeze them they are really good). I get my first WBC test Tuesday so I'll see. The other tip was for mouth sores- drink buttermilk and if you can't stand that eat yogart. I've been using biotene toothpaste and biotene mouth wash and haven't had a problem. I also used Senekot-S the night before treatment started and have not had any constipation which I'm very suspectible to.

I'm very happy with the port and am very happy that I have one. Think it will make this journey just a little easier.
The first Onc I went I was not very happy with, just did not feel they cared and my gut just didn't seem right. I went to two different onc for second opinions...this caused a week delay in start of treatment but it gave me a great since of peace and control. I would suggest to anyone, if you don't have a warm and cozy feeling about doc to at least check others out.

Welcome to our cruise JacqueN.....sorry you had to join us. The ladies on the board are wonderful.

Hope everyone has a wonderful weekend!
Nancy

BettyeE

I am already on board for this cruise, just didn't know where to find the rest of the crew! ILC Stage III 9 Postive nodes ER+ Her 2 -. I started with 12 TAXOL weekly then FEC X 4 every three weeks. I have one TAXOL behind me. Doing great so far. WE CAN DO THIS!!!!!!
Bettye