The Chemosabe March Cruise

Nancy, I am praying that your doctor has good answers for you and that the lit-up node turns out to have only been scar tissue - and that's what you felt last night. Be sure to let us know! Also will be interested to hear what he says about your hand swelling.
Sybil - glad your birding trip went off so well. We need to keep doing the things that are meaningful in our lives, even in the middle of treatment.
Terri (playwriter) - I think there are a variety of nail responses - when taking the taxanes, especially. All ten of my nails broke down really short about the time of my second infusion - and continue to break and split to stay that short. If I look closely, I can see three faint, white, evenly-spaced horizontal lines on about half my nails. Maybe from the hit the cells in the nailbed take from each infusion?
Jacque - I'm glad your sore throat responded so quickly to the antibiotics - once the onc. gave 'em to you! Have I mentioned I love your new avatar?
Marsha - hope your mouth sore disappears so you can enjoy the last two days of your 'good week'. Meet you at the bar tomorrow!
Patti - I get sinus irritation from Cytoxan each round - and I have never been one to have allergies, etc. But for about 4 days after each infusion I sneeze like a wild woman. And the runny nose in the mornings seems to persist continually.
Max - whew! Glad you son's appendectomy is over. What a day that must have been for you! Is he getting back to normal now? Thanks for the info about Kaiser and Johns Hopkins. Here, I go for treatment at the main San Diego Kaiser hospital center, but I believe that such esoteric needs as hyberbaric oxygen chambers for wound healing are still referred out - to UCSD. I'll have to see if I can use that in my attempts to go "out" for my DIEP.

I saw my onc. for my pre-tx#4 visit. The first time I didn't gain weight! I even lost a pound. Now if the other 8 would disappear, I'd be jazzed! Anyway - we talked about the timing for my ongoing treatment - He feels I need to wait at least six weeks after chemo before my surgery. He re-affirmed that I won't be having rads, so at least I won't have those six weeks to wait on top of it. I did have Grade 3 tumors, but he says since I had clear nodes and am having a bilat. mastectomy that rads are in no way indicated. I'm relieved because I don't really want to be irradiated if I can avoid it, and it should make my reconstruction a little easier if I have strong skin in the area. I also asked if he does a MUGA scan after treatment is finished and he said no, not unless a patient is having symptoms.

Going in shortly for my port flush and pre-chemo labs. Better go put some emla cream on so it can get working.

All the best to my March Chemosabe Sisters. We are going to make it!
Lisa

Jacque, MissShapen, Playwriter, Keenie and LisaSDCA, thank you for your prayers and I think they worked. The PET scan showed NOTHING and the onc felt pretty sure that it is scar tissue but suggested that I see my surgeon for my peace of mind. I called the surgeon's office, of course he's out of town, they wanted to schedule me for June 11...I begged and they put in for the May 24 at the end of the day. My onc is a no nonsense kind of guy so I really feel comfortable that it is scar tissue. As far as the swelling goes it is lymph fluid...elevate arm as much as possible, do the massage up the arm (it is minor swelling only to the wrist)and if it gets any worse they will send me to PT.

4th tx over (2/3's done) feeling okay. I will catch up on post tomorrow. Hope everyone is feeling well or feeling better. Hugs to those visiting the bar tomorrow.

I don't know what I would do without you wonderful ladies.
Nancy

Nancy
So glad you got good results concerning the PET. Mine had some false positives too pre-surgery - one of the down sides of that test.
Just had TX #5 (1st of 4 Taxol) today -sorry I forgot to sign up for a bar reservation - LONG day and I am very tired. Spoke to a high school classmate who was in for taxol & herceptin today - she could not get taxol today because she's having such neuralgia in her hands and feet. She mentioned that she thinks her fingernails are getting ready to fall off. I know my hands and feet have gotten really dry from the AC, and will probably suffer with the Taxol.
Wanted to share this with all my cruise sisters...will share details of DH's b-day party when I am feelin up to writing more - prayers are with you all
Words to live by NOW

IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck
(written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.
I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would have shared more of the responsibility carried by my husband.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have sat on the lawn with my new clothes and not worried about grass stains.
I would have cried and laughed less while watching television and more while watching life.
I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."
There would have been more "I love you's." More "I'm sorry's."
But mostly, given another shot at life, I would seize every minute...look at it and really see it live it and never give it back.
Stop sweating the small stuff.
Don't worry about who doesn't like you, who has more, or who's doing what.
Instead, let's cherish the relationships we have with those who do love us.
Let's think about what we are doing each day to promote ourselves mentally, physically, emotionally.

Nancy - great news! I'm glad that you are able to put that questionable node out of your mind so that you can concentrate on finishing your treatment. 2/3's down - you're almost there!

Dmknanny - loved the words from Erma Bombeck.....That's exactly how I feel, and want to start living that way NOW.

Terri - I hope you are able to hang on to those nails. I have also heard something about the benefits of tea tree oil, so it's probably worth a try.

I'm scheduled for chemo tomorrow, but my mouth ulcer has really gotten nasty, so I wonder if they will delay treatment because of it. Has that happened to anyone? I called the onc's office today, talked to a new nurse who said she would talk to the doctor, but then she never called back. I HATE THAT!!! My appt tomorrow isn't until 1:00, so maybe she will call in the morning.

Angel and Lisa - see you at the bar tomorrow

Marshabel

Nancy - so relieved that you got good results. How wonderful. I'm so happy for you.

Dawn - I'm like you, I don't tell my onc everything I'm experiencing, either. I hope they're able to help you with some of your more awful se's.

My husband and I attended a talk tonight for cancer patients on nutrition and exercise sponsored by a local hospital. I learned that the reason I'm getting bonier but not losing weight is probably because I'm not eating enough calories and my body is using the protein I eat for fuel, instead of maintaining muscle mass with it. I'm just not interested in eating. I have no appetite and what I do eat tastes flat. Plus, my gums are sore so I'm only eating soft foods. I'm even having trouble drinking plain water without gagging.

Sorry to hear about the awful se's some of you are having. I only have one more AC to go, but i can't think about it without crying. I sure hope I handle the Taxotere better.

Warm wishes and positive thoughts to all my fellow cruisers having cocktails this week.

Cynthia

Good Morning Ladies,

Once again thank you for all your prayers and thoughts for my bump in the road. Although I'm feeling pretty confident that it is just scar tissue, I'm really looking forward to my sugeon visit next week.

dmknanny, Hope you are feeling better, take care of yourself. Looking forward to details of your party. Thanks so much for sharing Erma's poem...oh so true!

Rosebud...Yippee on the WBC.

Taurie...Sounds like you have a wonderful onc nurse (no leaving the park).

Marshabel...so sorry to hear about that nasty mouth sore...have you tried the Magic Mouthwash? I'd call the onc office this morning again if you haven't heard anything.

Cynthia...maybe if you try to eat a bunch of small meals that will help. You can add a slice of lemon to your water or cut lemonade, grape juice or gatorade half and half with water. This seems to help me. As far as the Taxotere treatment, you might want to check out the Feb thread as I see many of the cruisers there are on that treatment and they all seem to be having a easier time with the T that the AC.

Prayers to Angel, Lisa and Marshabel for your bar trip today.

Nancy

Just a quick flyby to say I am home from a nearly six hour treatment #4. Bless her heart, I had told my driver we could probably expect FOUR.
I feel more hit by a truck than with the other infusions, and I've got marked tinnitus (ears are ringing) which I am ready to lose anytime now! Yeesh! And no, I wan't cranking my iPod at all! We watched Helen Mirrin's awesome performance in The Queen on DVD.
Gotta go try to find something appetizing.
Hugs all around!
Lisa

Well I survived TAC #4 today. Only 2 left to go. I will be so darn happy when this is all over with! Thank God I don't have to do rads.

Weird thing happened today though. I noticed when I came home all I do is smell like chemo. It's like my body is reaking from one of the drugs. I've been in the shower 3 times already and it's driving me nuts. I remember someone mentioning a while back that happened to them as well. Also can't sleep as usual, here it is 4:25am and I'm still wide awake as usual; but that's par for the course. I only average about 2 hours every 2-3 days. Yea I know I've been given everything mentioned here for that to no avail.

My son and dil and the 5 grand kids were here for Mothers Day and we had a ball. I love seeing them all and just wish we could get together more often. It's the first time I've seen my son since my dx in late Dec. He didn't seem to take it too well. I could just get that vibe from him. I think he's more worried than I am. You know how they look at you with that look of "you're on your last leg".....lol It kind of made me wonder just how bad I did look.......hehe

Some of you mentioned your skin peeling on your hands and feet. Don't forget to use your Cytaphil lotion after your bath each day. It will keep the skin on your hands and feet from breaking down and it will help if it's already started.

Those with mouth sores or mouth problems, don't forget to brush your teeth each day with Biotene toothpaste and use Biotene mouthwash. If you have problems already it will help and try to pick up some of the Magic Mouthwash, although I havn't been able to find out who has it.

I'll be busy around here starting tomorrow. Going to do some major cleaning when I get back from my Neulasta shot. My daughter will be arriving from Wyoming on Saturday and then the SIL'S will be here a few days after. I won't be online much from here until after the end of the month. Don't worry that I'm not around and I'm sick or anything. If I do have problems you gals will be the first I come to for help and support. Have a great Memorial Weekend coming up next week for all. Hope you get to eat lots of good food and enjoy your friends and families.

Wishing everyone going to the bar good things with no se's and praying for those with sick families and for ourselves.

Love,
Angel

Lisa, you seem to get zapped with the never-ending infusions! Glad you finally made it home. I plan to be cranking my iPod this morning!

Max, is hand - mouth syndrome different from Neuropathy? I thought it was the same thing. My hands and feet only peel in the areas that were affected by the pain and swelling I had a week or two ago... like some delayed reaction.

I slept pretty well after my first dosage of 5 decadron pills last night, however, I did wake up from 4am - 6am. Now I have to take 5 more before I go-go.

Good to hear from you, Angel! Sounds like a happy mothers day for you. I know what you mean about your son feeling kinda weird about the whole thing... mine did, too.

The magic mouthwash is actually an RX from your doctor. I would definitely request one if I was having so many mouth issue I couldn't eat. I am getting my first taxol in a few minutes, so I will find out shortly how it will effect me.

Patti, Glad you had a nice visit with the rads onc and he was interested and answered your questions sufficiently. I need to call mine soon, so I don't end up with a big gap between chemo and rads.

Love and good wishes to all!

Miss S

Good morning! Hope this finds everyone enjoying the cruise and not experiencing too many SEs!

Max, Have you heard about bagbalm and or udder cream? Other people on different threads have posted about using it with gloves and socks to help keep their symptoms at bay. You need the smelly kind, not the toned down version.
Thinking of you today as you take your tx.

Miss S - Good luck with your tx today!
Neuropathy is when you have numbness, pain and tingling in your hands and feet. I think Hand and Foot syndrome is when your skin peels and can cause painful sores. One thing to watch for with that is infection. I have a friend that had this and had to go on antibiotics.

Pmarsh - Hang in there, girl. The rads are a pain and inconvenience, but have the potential to keep that beasty at bay. You will do great!

Angel - I notice the smell, too. The good news is, once you are all done with this the smell will go away and you won't have the constant reminder of what you had to go through.
Also, the magic mouthwash is a prescription, so you need to get it from your onc.
Enjoy your family this weekend!

Nancy, so glad you got good news! Keep us informed about the biopsy!

Jill and Sybil - hope all goes well with your tx today!

To everyone else - consider yourself hugged!

I am going to help in my old classroom (I went on long term disability in January because of complications with my cancer)this afternoon to help set up for my senior student's open house, which is tomorrow. My co-teacher asked me to volunteer some time as she will be out of the building and the substitute teachers wouldn't have a clue what to do to get ready. It will be fun seeing my students and coworkers as well as getting to pretend I still work there!

My next tx is Monday. I was taken off my heart rhythm meds last week, so am curious how my heart will react to this next tx. Two times ago it went crazy and the last time I had no problems. I would appreciate prayers for it to behave again this time!

Take care, Jacque

Hi Fellow Cruisers-
This cruise needs to pull into port one of these day, I'm getting a little seasick!

Loved the Erma Bombeck piece. Our family just started my mom with hospice - she's been in a decline since the beginning of the year (just about the time I received my diagnosis of BC) with Parkinson's. To say the least it's been a tough 5 months. Anyways, I was asking God what was up and I think he told me I needed to slow down. Pay more attention to myself, my family, my friends, and everyone else around me. I'm listening. I think my life will be different when all is said and done.

Sorry to hear of everyone's SE's - it's the pits. I'm a week out from my last IV, but still on the oral. The doctor cut down the the dosage on both the Taxotere and the Xeloda this go round. I was down for the weekend which I think is caused by coming off the Decadron mixed with the Taxotere IV. But with the reduced Xeloda, I actually feel pretty good this week.

Hugs to all,
Lisa

Hi Girls!

Omigosh! The Erma Bombeck words are beautiful. I'm wondering if I could borrow them for another thread...?

Also...WOW...what a fellowship here...that's what this place is all about for sure.

Hugs
Peggy

Hi all,

I woke up with bone pain today. I figured it wouldn't last so I didn't take anything, and not only did it last but it spread. lol So, I finally took a darvocet because it seems to work the best, but I'm wondering if it's normal to still have bone pain a week after the last neupogen shot? It feels just like that pain.

Thanks for your help. I don't know what I'd do without you ladies.

Cynthia