The Chemosabe March Cruise

Bettye...you can do this....hang in there. Rest...drink liquids...pamper yourself. I think we know better how to deal with se's as the treatment continues. You are in my prayers and know that God is there with you...carrying you when needed.

Prayers for all with se's...Melissa, hope you are feeling better and that those mouth sores are gone. Rosebud...sure hope that bone pain has stopped...Lisa, hope you are still enjoying those muffins.

Nancy

We had a horrible storm yesterday and lost power so no posts yesterday!
I am having such bad luck this year. The storm blew my awning into my pool and ripped the liner. I am praying that I do not need to replace the liner as that can be so expensive. My fingers are crossed.
Keenie
Thank you so much for all the tips for the mouth sores. It's sucks that we do not have the same access to certain drugs here in Canada.
Marsah
My pain started in my back then moved to my butt and then went all over my body. But my butt was really bad. I have two more to go and I am in tears just thinking I have to go through this two more times. Praying that I won't get the same SE as last time.
Lisa
The toxotere also made me so tired. I was almost comatose from day 3 to day 7.
Rosebud
This toxotere is some mean stuff! I have my next TX #5 on Tuesday as well. I am like you just stick my bald head out there for everyone to see.
One of my friends say's I am like all the girls that are pregnant now they just show there tummies off. I feel to heck with it and show my bald head I just don't care. I am already suffering with all this why should I be uncomfortable just to please other's that don't want to see my head. Heck with that this is our time to be selfish and I don't care.
Nana
You go girl and you take that break you disserve it!
Maxigirl
35 rad treatments ouch! I hope it goes smooth for you! I can get the white cell booster but at that time it was to late they said it was worth seeing if My body could do it myself. We are debating whether I should have one for my 5 tx. I agree with you about not being with terminal patients but the hospitals are so over crowded so just no options.
pmarsh34
Thank you so much for walking for all of us. I am thinking about you today and all the others in the walk. Hope it's good weather for you all.
Bettye
You can do it! HUG and prayers sending your way. All the way from Canada.
Nancy
I am feeling better but I am so scared for tx#5. I cry every time I think of going in for the toxotere. I know I can do it and I will. But I am still scared!
Miss S
thanks for your kinds words. I am so sorry to hear about your lymphedema that can be very debilitating. A lady in my Monday support group has it and she gets massages to help with the drainage. Are you getting good support for it?

thanks for listening and wishing and praying everyone has a wonderful SE free weekend.
All the best
Melissa

I'm going swimming! I went out and bought a new bathing suit and a cap this morning.

Every summer I've done an early morning swim 3 days a week at our local pool, but with having to stay out of the sun with Taxol and then having rads, I thought I wouldn't be able to do it (never mind being too tired!).

Also, I read that when you're having radiation, you should stay out of chlorinated water. But the rad onc said, "Yes, if it stings, get out of the water." Well, I may get to the point where it stings, but I still have at least 4-6 weeks before I get to that point. She's had patients who have swum right through rads.

I can't tell you what a boost this has been to my spirits. I won't be swimming my half hour of laps, but 15 minutes of weightlessness looks awfully good right now. I'll go early, and then if it wears me out, I'll still have time for a nap before work. (No, this won't work right after tx!)

BBL with individual replies.

Lisa!

Tomorrow is my son's (I lay claim to the sweetest, bestest baby boy!) birthday and he is also turning 23! Have a great day with your daughter and her beau!

Miss S

PS... I should be able to work in the sleeve. I'm going to have to! Anything has got to be better than wrapping! ARG. Yes, it will be custom made.

Hi ladies,
I had tac#5 on Wed and it wasn't too bad. I've been having some big issues with my underarm and breast area hurting. I will be seeing my surgeon in the next couple of weeks but until then I'm just having to take it easy. I've got the metal taste right now and nothing seems to help it. I've gained so much weight on these steroids I feel like an ooompa loompa. I can't even imagine trying to take off all this weight after chemo ends. I have 1 treatment left in 3 weeks and that will be the end of it for me hopefully. I don't have to do rads Thank God so maybe I can start to get on with life again.

The kids are out of school for summer here and it's been a bit hectic around here. Havn't had much time to get online or do the usual shout-outs like usual. Just hoping everyone is doing well or better and that this cruise will be over for us all soon.

Love,
Angel

Bar Reservations June 11 - 15

Monday: Jacque

Tuesday: Rosebud (#5, #1 Rad), Whitecotten (#5)

Wednesday: PMarsh (#5)

Thursday: MissShapen (#7), Taurie

Friday: HollyHopes (Last Taxol....Hooray!!!)

smooth sailing!!!!

Hi Playwriter,

You look like you're having so much fun! I love the beach, but my closest one is about 12 hours west of here . . .I'll live vicariously through you.

I started the Tamoxifen yesterday and I had a queasy day and had to RUN to the bathroom last night. I've been posting on the Hormone board and it has been scary to read about some of the side effects people have had. As always, this is just another bump in the road, weighing risks and benefits. But, it was really hard to take that little pill.

Praying for everyone at the bar this week and those recovering. It will be wonderful when we're all done and can complain about other stuff.

Christine

Thanks Rosebud....I needed that today!

Nancy

My tx went fine, but my substitue onc was so YOUNG! I swear he looked like he was 14 - a real Doogie Houser! I am sure he was older than that - he was wearing a wedding ring - but he has only been with the group for a year. He said my onc will be out at least another month - sigh.
Holly - you sound in your post like you are feeling better. I sure hope so!
Rosebud - loved the verse - a favorite!
Christine - good attitude. You can do this - and if this drug doesn't agree there are many more choices.
Playwriter - loved your pics here and on your blog. Looks like so much fun!
Taurie - so sorry about your lymphodema problems. Maybe once you are done with all your txs it will clear up. I found that taking water aerobics really helped mine. Along with the exercise the water provides a constant pressure.
Angel - you take care of yourself! Be sure to take time for you.
Thinking of everyone else and hoping our bar

Done with #5 today..tired! One more ladies and I can't wait. Rads went swell today also, no pain and easy cheesy. Big plus, I get my choice of jucies when I'm done. Got to love the free stuff..Hugss, I'm off to bed...rosebud

Hey, cruisers --

Warning, enormous post coming up.

Lisa, playwright, Nancy: Thanks for the encouragement on the swimming. I went yesterday (7 am!) and will go again tomorrow morning if the thunderstorms hold off. It was just as heavenly as I thought it would be, and it was actually easier than I feared. I thought my muscles would be shot. But I took it slowly, too -- no reason to knock myself out!

Yes, Holly, me too on the last tx, only mine is going to be on Thursday. The last few weeks I've felt like I was dragging myself to the summit of Mt. Everest, and I can't believe we're actually going to reach the top! But I think I'll wait to celebrate until at least a week later when the SEs start subsiding.

I've started obsessing on the fact that I haven't had ketchup in 3 months because of the problems with my mouth. It almost heals up, then it's time for the next tx. So I'm setting a target date -- July 4th - I plan to have a hot dog with just a little ketchup.

Holly: Congrats on all your wonderful good news, too! You must be so proud of your kids.

pmarsh: You cracked me up with your Yuletide boobs. LOL

BettyE: I'm so sorry you got kicked in the butt by the FEC. I think knowing what to expect and learning how to deal with it will help you with the next 3. Also, never be shy about getting the meds you need to feel better -- that's why they were manufactured, that's why they're prescribed.

MissS: I got a taste of one-handed typing when the neuropathy was really acting up in my left hand, so I can appreciate the problems you were having with hitting the wrong keys and just being incredibly slow. I hope you can get your sleeve soon.

I didn't mention the drop in my MUGA scores before because I would have started a rant that would have gone on for days. I ended up changing my onc because of it. I started at 68 and then dropped to 52, which the onc kept saying was a low normal, no problem. But "not" normal starts at 49. I was checking the research literature, and only 1-2% of chemo patients suffer a "significant" drop in their scores -- significant being anything over 10%. Mine dropped 23%, and this was before the last AC had really kicked in.

What enraged me was that he didn't tell me during my office visit that he was ordering the second scan (because of leg edema). Kaiser now gives you a printout from your office visit with the results of the visit, any special instructions and referrals for tests. Instead of printing it out for me, he waited until I got the Adriamycin then gave it to my onc nurse to give to me. Thinking I knew everything about my visit with him, I didn't read the printout until a little while later.

Then ensued 4 or 5 days back and forth with the onc about why he wasn't forthcoming about the test and if he thought anything might be wrong, why did he let me continue with that treatment. He kept saying that I would lose the effectiveness of the dose-dense regimen, and I kept saying that should be my choice, not his to ramrod me through treatment no matter what the damage. I got nowhere with him and changed oncs.

The thing is that he is on the research team for the clinical trial I'm in (B-38, which is comparing TAC, DD AC/T, and AC + a taxane and Gemzar, a drug that has been used only for advanced stage BC). My take on this is that if he cared about me as a patient, he would have waited for the test to be done before letting me continue with the last AC. As it was, the only purpose of the second test was to document any decline, without being of any benefit to me.

An oncologist friend of mine, who lives in another state unfortunately, told me he discourages his patients from taking part in clinical trials unless there is no other avenue left. He said the researchers too often treat his patients like lab rats instead of people. As far as I'm concerned, my onc is a perfect example of this. Ironically, a company I worked for did a survey of physicians for the National Cancer Institute, to find out why physicians weren't recommending their patients take part in clinical trials. Again, this guy is why.

I was awfully tempted to quit the trial, but I believe in the science of it, and the follow-up and monitoring is very good. However, each time there is research involving "human subjects" as we are called, the project has to pass through an Institutional Review Board to make sure the human subjects' rights and well-being are guarded. Well, the IRBs for both Kaiser and the National Institutes of Health are going to get an earful about this guy from me. Actually, I think I just wrote most of the letter.

And that was the "short" version of my rant!

whitecotton: How did your pool liner do after the awning fell? Hope you didn't have to make expensive repairs.

Jacque: Hope you can stand being with the Doog while your onc is out. What terrible timing!

Lisa, Miss S: A late Happy Birthday to your perfect children!

Playwright: What a great trip to the beach! That must have made you feel wonderful!

Dawn: I was wondering what took you away from us. Sorry the lymphedema is such a problem for you.

Angel: I hope your soreness is nothing serious. Did you have SND? I found I had problems with scar tissue from mine and had to keep stretching my arm or it would start bothering me again. Great that you don't have to do rads!

Keenie: Hope the Tamoxifan gets easier or you can find a substitute that works for you.

rosebud: Glad your combo day went smoothly.

Nancy: You're always so supportive of everyone here. How are YOU doing?

Dear Rosebud,
I read your posts on the other board, and I so agree with you. I have found that with every choice to smack this disease, another side effect or possible complication accompanies it. I struggled with the Adriamycin choice, but I wanted to be done in 4 tx and not 6, so I chose it. I don't like the Tamoxifen's s/e much, but I know I'll have the most success in stopping recurrence with this drug. So, like you, I pray for guidance and trust the Lord. He's ultimately in control and I have to let HIm control things. So hard for me - the big control freak, that I am!
Blessings to all,
Christine

Hi Girls,

As I read through our posts I am amazed at what a wonderful, strong group of woman we are. I think we have each had our rough patches but we’ve helped each other and we ‘ve continued on. I see people finishing this part of the journey, and I’m so happy for you, and moving on to other treatments ….we just do what we have to do, don’t we? I want to thank each of you for the support and love you have given me….and the laughs…..I know God is with each of us……it’s nice that you’ve been here too.

{{{{{{Love}}}}}
Nancy

Want to shout out to everyone but feeling a little punk…..wbc and hemoglogin down……Hope all a feeling well….those doing rads are fairing well…prayers and thoughts to all.

Ok Ladies....I may live. I just decided this morning. I had FEC 10 days ago and neulasta 9 days ago. The FEC put me down a full week and I mean down. Then the next day the SE from neulasta hit me. I hurt so bad in my chest and left arm that I was sent the ER for EKG and chest xray. Then on to Chest CT scan to check for a blood clot in the lung. Thank goodness all was ok. By noon the pain was shooting up into my head and down into my hips. Also when I start to take a first step, my hip feels like it is going to jump out of place....very painful.
Has anyone else had this experience with neulasta? Is it just standard treatment to get the neulasta everytime you get the Chemo? Do the SE get any milder?
I'm here to say that I am not looking forward to 3 more treatments. I am doing the treatments every 3 weeks instead of every two. Just can't do that. I thought I was really sailing with the TAXOL. I hardly had any really bad days. FEC is a very different animal.
Good luck to all. I pray for everybody every night.
Bettye