The Chemosabe March Cruise

Steph,
I usually do the copy and paste thing as well but for some reason didn't do it this time....Grrrr! That post could have filled a whole page here. Oh well I'm not going all the way back so will just start from this page on.

Sheri,
Back porch naps sound great right now and with the weather warming up here I think my patio porch swing in a nice breeze might just be the trick today. Just be careful on the porch not to be in the sun as with chemo it will begin to break down your skin.

Taurie,
Sorry to hear about your misery with the port. I don't think mom didn't believe you but that she too thought there was a problem with it and wanted you to get it checked. I'm so glad you finally did and they gave you a stronger pain med. Just remember it that doesn't work get on the phone and make them change it. For some reason we seem to suffer through whatever they give us and don't complain when it's not working.

Rosebud,
Glad to hear about the clear scans and about your quitting smoking. I'm a smoker too but have decided to wait till the chemo's over and stress with everything right now and it will be the Cold Turkey for me as well. Good luck with it sweetie and I promise not to blow any smoke your way...lol

Melissa,
Welcome to the March Cruise however sad a bunch we might be right now. But I promise to save ya one of those pool boys since I think I'm moving on to somebody with man boobs myself. One of us needs them I guess..Hey is Dave from Paradise Hotel still around?........hehehe Just kidding happily married here.

Maxgirl,
Sorry to hear about the mouth but get you a truckload of Biotene Toothpaste and brush 4-6 times daily. Get the Biotene Mouthwash and rinse about 6-8 times daily. Will prevent it from coming back and get rid of the sores in a flash. I started mine the day before Chemo and filled those travel bottles like you use on planes and have them on all the end tables and nightstands so I can just reach for one, rinse and spit.....lol I'm with you on the slower C drip as well. Maybe it will help with the headaches I'm having.

Holly,
For some reason everytime I read a post about you I crack up. I am having visions of you showering with your priest downstairs, you falling and yelling for help, priest comes to your rescue......Boy that would be worth the price of admission wouldn't it?.......lol Just hope somebody's around with a digital to record the event for us....hehe
Glad you found a solution for the picc line and shower thing. Get used to the friends not doing what they're supposed to. It seems like they go South for the Winter while we suffer on and plunder through day by day with this disease. I depend on absolutely nobody but the hubby. Don't know what I'd do without him, but depend on someone else NEVER! I've seen too many people here complaining about their families and friends all doing the same things..You would have at least thought she could have had someone else cover for her. How rude and inconsiderate I say. As for the Decadron, I'm doing it now because I'm on the TAC regimine and receiving the Taxotere each treatment which is equivalent to your Taxol you'll be doing later.

Keenie,
Glad to see you coming over to us to help. We need all we can get. I had the same thing as you on my first treatment. With the Decadron got the Sinus Headache symptoms from the tip of my nose to the top of my head. Eyes were fuzzy and runny, nose felt like it burned a slight bit like I need to keep blowing it and then the sinus' clogging up. It went away in about 30 minutes and I was pain free till it was time for the Cytoxin. That did the same thing and it was an hour or so before I felt some relief that time. I came home with just a tad of a headache that seems to be getting worse by the day. I'm calling the onc today to see if something besides Tylenol or Ibuprofin will work.

Lisa,
Don't be too negative about missing the boat on the work side of things. It could also be your friends at work trying to take some of the pressure off of you right now and not trying to make you feel like you have to stress with keeping up. I say go for it and be happy about it, but I know how you feel inside; it's just one of those things that tell us we're not up to par right now.

MissShapen,
Glad you're on the cruise with us but sad it had to happen. Don't stress over the StageIII thing cause you'll do ok with that diagnosis too. The Chemo and Rads will let all those loose cells know they've been Served their "Eviction Notice" as someone else here stated once. Just be glad the scans were clear and you can kill this crap off NOW! Good luck to you and we're here for support.

White cotton,
Not sure about the drugs you're doing unless they're new or other names for some of the ones we're all doing. As far as the port. I'd insist on it! Not many have a picc line and as you can see Holly has had a hard time with hers just in the showering way of things. And don't think the veins could handle all the Chemo and blood testing you'll be getting. Discuss the port with your Dr. and make them give you one, you'll be so glad you did.

Pmarsh,
Sounds like you're having some problems with your anxiety level. I only think that because you're not eating much right now and most of us were about the same. Make sure you ask your Dr. for something to help you sleep as well as something for your anxiety if you're not already doing that. It definitely helps with the stress level and I've learned through this process I'm not going to be a damn Martyr. If I need it I'm going to get it for myself. I'll worry about all the drugs after this crap is over with.

Nancyab,
Hey do you have room in that big bed for me? Just asking cause I could use a good rumble right now....and I don't mean in the sex dept. I mean just to jiggle loose some of these achy spots on the old bod right now. I havn't heard of your symptoms before but am wondering if it has anything to do with bone or joint pain you'll be experiencing later if at all. Think I'm gonna keep an eye on your experience and see where it takes you.

JannM,
I'm a little concerned about your oncotype test. Did you have it done to see wether or not you'll be doing Chemo? If so why the date a week later being planned. I'd get those results and sit on them for a bit and make a good judged decision that's right for you and not the onc. Afterall they're not being paid if you're not receiving treatment. Of course it could be that they're making the appt. so as not to postpone it any further if you do go through with it.

Jacque,
Glad to see you found us just too bad it had to be here. You'll do fine this time around as well. It seems like sometimes life is going pretty and you think things are behind you then BAM things start to suck all over again. So sorry to have to go through this crap all over, but we'll be here to support you. I havn't even begun as yet to request my pity parties, but you can bet ya I will be soon.

Playwriter,
Don't get real discouraged with the onc as yet. It could be it was just an extremely bad day unfortunately. Stick with your chemo date for Thursday so you won't have to start this process all over. Besides you won't be seeing the onc very often anyway. I made my app with my onc the day of my chemo to kill 2 birds with one stone.

LindaDk,
No problems with odors as yet Thank God. I did have a few gas bubbles the first evening but not enough to worry about, not sure about the hubby's nose though....lol I thought it might be from the stool softener I was taking but wasn't sure. I decided to cut that one off unless I do start having a problem then will add it.

Angel

Nancy, I have the red neck and cheeks, too, the next day and some after chemo: they told me probably from Decadron (at least we're not looking pale...).
CatherineH

Quote:

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JannM,
I'm a little concerned about your oncotype test. Did you have it done to see wether or not you'll be doing Chemo? If so why the date a week later being planned. I'd get those results and sit on them for a bit and make a good judged decision that's right for you and not the onc. Afterall they're not being paid if you're not receiving treatment. Of course it could be that they're making the appt. so as not to postpone it any further if you do go through with it.

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We're 99% sure I'm be chemo. The oncotype was to back that up and to confim the type of chemo she wants to do (T/C) is the best route. I'm concerned about next week being my six weeks post op and not having chemo started. She lead me to beleive it needed to be started by then, but she says she needs to wait for the MRI (very dense breast tissue and we want to make sure nothing else was missed) and hopefully the oncotype results. The appointment was schedule for my anxiety benefit. She said not to worry, so I'm trying not to, you know how it goes.

Im with you Marshabel, I wake up quezy every morning and have to take a anti nausea pill still and Im on my 8th day!! The rest of the day Im fine, but mornings are killer, reminds me of morning sickness.

Jan

I kind of figured that's why the appt was made but wasn't sure. Don't worry about the 6 week post-op being 6 weeks or more out from surgery. It doesn't matter when it's starts to kill those cancer cells as long as it does. I was more than 6 weeks out of post surgery before I could start mine....(long story) They just don't have any test scores for it because most people don't wait that's all. Just make sure that if you don't start by then you at least get your port flushed. That has to be done by the 6th week no matter wether you start then or not.

Marshabel
Don't worry about the pity party you shared with yourself this morning. We've all had them and continue to do so. You're entitled whenever you want one I say. One thing I'm starting to find out is that eat some breakfast wether or not you normally do and then take the meds. Even if it's just a small cup of cereal. Seems to help that queezy stomach in the mornings. Hope you're feeling better now and I'm sending you some big hugs and a new shoulder to cry on.

Misk
Well sorry we have to embark on this cruise together but you have tons of friends here sailing with you. You'll be glad after the first treatment is over with and you don't have to have that anxiety as to what to expect. I'm presently 2 days out of my 1st round and doing pretty good other than a headache from one of the meds and some major heartburn. Hubby is rolling in at present with some Pepcid AC and Tagamet as we speak. Tums didn't begin to touch it. I say if that's all I have to worry about right now I'm doing pretty darn good. Hope all goes as well for you.

Angel

HI Marshabel and all,

Marshabel...I am day 7 after 1x of chemo and I know exactly what you mean. I didn't hav a hard time sleepign thanks to lorazepam (ativan) but my emotional state is definitely challenging to regulate. Makes it hard at work to be doing people's annual evals which is what I am facing right now. I started getting diarhea about day 3 and it's been persistent. Had a little fever last night but went today to get my PICC line bandage changed (had to have a freind drive me, cause I felt too weak and woozy and fragile!) and now am sipping some broth. Hope you are feeling a bit better. I am learning htat this is not like a steady climb up or down, more like driving a winding road whenyou don't know what's around the bend...

Sending love to all and especially Marshabel,
Holly

My doctor said to only worry about fresh fruits and veggies if your white blood count was down. They say its lowest on days 10-14, so my intent was to avoid them during that time. However, she said it was not necessary unless your blood test indicated it was down.

I would go nuts without the fresh stuff! That's a good portion of my diet.

charlie

This will only make us stronger!

taurie: Yes, you're under stress and emotional, and, yes, you're right to be upset by your onc. This is a horribly stressful situation, and anyone who deals with us medically should be like your surgeon -- you deserve it. At the very least, they shouldn't blindside you with an extra charge -- they should have told you that you were going into "overtime."

Can you see another onc for a second opinion without cancelling everything with the first twerp? Then if you like #2, you can switch. If you've already had scans, you can just transfer them to the new doc. I know it's one more expense, but it makes such a difference in your mental health.

Angel -- Thanks for summarizing all those helpful tips in one post. Sorry to hear you lost two long posts, but glad to hear I'm not the only one. I was beginning to think it was my computer because it happened at another site, too. The dangers of mega-posting!

I will definitely get the Biotene mouthwash and toothpaste. My mouth is a lot better today, just the tip of my tongue stings a little. I'm still steering clear of anything spicy or acidic.

For chemo mouth, a friend said her mother liked to suck on apple slices, and it worked pretty well for me, too. I also found I could drink apple juice when water felt too "heavy."

One taste change that bothers me is milk. I love it and can still drink it, but there's a metallic taste to it now.

Welcome, bettye, MisK. Have a drink on me!

You, too, 3boys! I'm not positive how it works when you get pre-surgery chemo, but mine wasn't finally staged until they knew how many lymph nodes were positive. I've been reading some of the research on getting chemo before surgery, and it looks like it can really shrink tumors, even clear out lymph nodes sometimes. But you know what? If you don't want to know the details, tell them. All you really need to know right now is how to take care of yourself. If you ever want to know more info, it will be there.

playwright; How cool that your onc called to apologize! Must make you feel so much better.

linda, marshabel -- Gentle hugs and hope that you both feel better.

Finally going for CT scans tomorrow (MUGA, bone scan, and 1 treatment already done), so I get to down that lovely barium solution. Good old Kaiser had only one flavor -- banana. Erp! I like bananas, but not in thick liquid form. Gah!

Max

So today was the "end" of my bilateral mastectomy. Almost 5 weeks but my last drainage tube is finally gone. I felt better as soom as it was out! I am going to sleep in my bed tonight for the first time since surgery! I have a feeling that after I start chemo Thursday I may be spending a bit of time there.
I had a conversation with my boss yesterday and told her that I need to work from home if I am going to be able to work at all. She was really cool about it and seemed to be understanding. I am not sure if that was really how she felt but it was what she said. I feel an incredible urge to be home when my kids aren't in school. I can't stand to be away from them any more than I have to be. Tommorrow afternoon a bunch of people from my church are coming over for a housecleaning party. I am so very blessed to have so much help. I used to think that I wouldn't want anyone seeing my house if it wasn't clean. Now, I am just glad to have some help getting it that way!
I read each and every post that all of you put here and I am learning a lot. Probably more than my brain can process some times. I appreciate all of you sharing what is happening with you.

Linda, I especially appreciate your candor.

Angel, I thought you gave this tip, but can't find it on this thread. If this is your tip, THANK YOU! My last chemo I had a terrible time with what I thought were urinary tract infections - that often couldn't be diagnosed. My onc would prescribe anit-biotics as a precaution - but usually couldn't get anything to 'grow' in the tests. Now I realize it was irriation from the chemo. The tip I saw was to keep a squirt bottle of water in the bathroom to cleanse the area after you are done urinating. In the middle of the night last night the old familiar burn began - so I ran and got a water bottle and had immediate relief. I have used it ever since and it has made a huge difference. A real Godsend. I am going to have to get a little bottle to have in my purse so I can use it when I am out and about!
Another tip for keeping blood counts up I read on another thread is to drink 100% concord grapejuice. Don't know if it works - but I bought a bottle - couldn't hurt!
I have been eating Activa yogurt one day and a Yoplait the other to keep myself regular. So far it has worked. I also purchased Keifer - a yogurt based drink that is suppose to help with your gut flora and immune system as well as thrush and yeast infections. Time will tell if any of this helps.
I sure am grateful for this discussion board!
Jacque

Angel Thank you for sharing all the wonderful information. Now I actually know a few of the things to look out for and to aviod. I also now feel that I can care for my mother better in addition to being there for her and help her get through this.


Steph_j Thanks for the great nutrition info. Did your nutritionist say how to get the 90 grams of protein and the antioxidant rich foods i.e. did she recommend certain foods that would contain more protein/ antioxidants than other? Did she recommend any particular protein shakes? I am asking for this because my mother does not live here in the US and the Food and drug controls are not as strict as they are in the US/ North America. I am trying to learn as much as I can so that I can prepare stuff for her myself or take some suppliments with me from here. She is also a diabetic and has a little bit of a high blood pressure. I would appreciate any tips on how to manage her nutrition without aggravating her existing issues.

Playwriter Thank you for compiling the list. We will make it through together!

Healing hugs,
Maliha.

thank goodnes 1stlight! i am easily digesting oranges, cukes, and spinach and can't imagine not having my lovely fruits and veggies...

wishing you well..

-H

This may be late but I got my port on Friday..the 16th. Dear, it hurts like hell. I couldn't move anything on that side without sharp pains. I woke up Saturday morning and just about passed out from the pain. I have been taking the meds they gave me for pain and it's getting better. I start chemo on Tuesday and I am hoping by them this calms down. I hope your's is feeling better..Christine

Hey playwrite..I'm in Michigan..not that I wouldn't LOVE to be in CA..but..MI is where I call home..Thanks

HI Bugs,

I can sympathize with your mom. I have had diarhea for 6 straight days now...it seems to come and go and mostly I can sleep through the night with only one or two times of having to get up...only occasionally is it accompanied by cramps or pain like when you have an intestinal bug. I have been dealing with it by eating really bland foods - rice, vegetable broth, toast...the usual sick person foods, but also have taken immodium with moderate relief. My bum is sore and someone suggested little pads soaked in witch hazel which I have not tried yet.

I hope she feels better and I hope I do too and I really hope this doesn't last for months on end..so to speak!!