Between the Devil ( the red one) and the deep blue sea
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Marybe, my prayers are certainly with you. I know I have told you this before but I will say it again. You are a real inspiration to every single person on these boards. I think you have prevailed because you refuse to let cancer rule your life. You don't stop moving and it's tough to hit a moving target! I had to chuckle when you mentioned you tried to delay the start of the little Red Devil due to your parties. That says it all!
So, I know I told you I finished AC in Sept. Honestly, I know it gets a horrible rap but, I didn't think it was all that bad. I was mainly just tired. I think the constipation is from the damn Zofran.
I will be thinking of you. Merry Christmas!0 -
Hi Marybe, my neuropathy began while I was AC. Yes my feet are numb so I have to be sure to wear shoes or slippers with a firm sole. Sometimes I still get the electrical zaps and they hurt a bit but they go away. I do also have it in my hands and I suppose it is like having arthritis. On Arimidex the pain in my hands is enough that I need ibuprophen to calm it down. But I can still use my hands. I know that would be especially important to you. I wanted you to know that I can walk and I can use my hands. I can even thread the needle on my sewing machine. The numbness is weird not like I thought it would be, not like novacaine.
Have a good Sunday and do something that is fun for you.
Hugs Ginger
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Hi Marybe, I thought I'd warn you about an SE to the Red Devil that someone posted here a while ago. She said since she'd had it she couldn't drink red Koolaid any more.
It's tough, but you can take it.
Leah
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Wow!! 3jays, you made me go ask Dr. Google!!! There is aspartame in the gum which does include phenylalanine!! I checked it out and I would know by know if I had PKU as it is connected to protein consumption. Thanks for the heads-up though!!
I can normally taste aspartame a mile away, and this is the first gum where the taste isn't there!!
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Chilipadi....I woke up in the middle of the night last night, thinking did I read that right? So this morning I just wanted to tell you I am thinking of you..... I have never known anyone having the problems you are having....and I'm so sorry.
And to think I whine and moan about how my bones all hurt at night, and when I wake up, and this "danged arthritis." But then I read something from you, and get hit in the face with what reality really is, or could be!
You are truly a warrier...doing everything you can to just have some sort of normal life! You and Marybe! I read your posts....You are an inspiration....
And I would bring you soup!
All the other people in your life that just ignore or don't pay any attention to you, aren't even worth your thoughts or time. I said prayers last night, for you and Marybe....that's how I can help...maybe just a little.
Thanks for making me see that some of us don't always have great days, that we need to be thankful for the ones we have.... I'm not going to complain so much about the "small stuff' anymore. My best wishes for you and your Husband....xoxoxo
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3jaysmom, Thanks for the info. I take a med. that gives me dry mouth and was going to look for the gum Barbe mentioned BUT I have tried to avoid all aspartame for about 10 years now, since I discovered Diet Cokes gave me headaches and a brain fog, all due to the sweetner.
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I'll keep everything crossed that the A works well for you. That was the first chemo (A/C) that I had, and it really did a number on my liver mets. I had multiple mets - too many to give me a number. I did 6 A/C, then 6 Taxol Herceptin, and it totally cleaned my liver of tumors.
I actually found A easy to tolerate, just had a little nausea after the 3rd tx which eating something took care of. It did mess with my nails, but not too bad. I wish I could still use it, but I've maxed out the amount you can take.
One thing to keep in mind about constipation - anti-nausea meds can cause it. I usually get Zofran IV as a premed, but they're experiencing a shortage right now, and they're using Kytril instead. I got really constipated from it, so I hope they go back to Zofran soon.
I'm glad you're still feeling pretty good. That makes all the difference in the world.
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I am not allergic to Equal that I know of....have grown up with artificial sweeteners, drank a lot of Tab and Fresca....used to eat the saccharin pills (that's what my sister and I called them, pills) at my grandparent's house...Maybe that's what my problem stemmed from. But honestly I do not think this is an allergic reaction to zofran, but I will ask about it. I am not taking the pills they gave me because I have no nausea, but I do still feel sort of groggy. Went to the office party and only fell asleep once during the play, and had a very good meal. I have been in bed catching up on tv shows I missed, but hope to may accomplish something today. I am working tomorrow since they moved my treatment to Tues so I will have to take that day off.
The reason my onco said he preferred adriamycin to the taxotere/carboplatin which was a suggestion of the other onco I consulted with here....both lower dose weekly.....was the peripheral neuropathy issue.....and I honestly think the neuropathy I had from Xeloda, Gezzar, navelbine or whatever ones caused it in the past is getting better....I only say this because I now have a lot more feeling in my toes...they hurt from the shoes I had on last night so I know they have feeling now.
For dry mouth I am using a bunch of Biotine samples I got from work. I have gotten to the point where if I chew gum, I constantly bite my lower lip so I don't chew it.
Later: Onco's office just called to see how I am doing. I found out I did not get zofran in with the premeds.....only have the tabs to take at home and as I said I am not taking them because I do not need them. The nurse who called said I got emmend(sp) aloxi, pepcid, and decadron in the premeds....the last one mentioned is obviously not working because I know when they used to give me that one, I would be up for two and 1/2 days, cleaning out closets, doing all sort of stuff in the wee hours of the morning.
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Marybe, isn't Emend an anti-nausea? As for biting lips, I had to smile (it hurt)...I have a huge bite on my bottom lip but that was from eating lasagna!!
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Marybe, Emend IS an anti-nausea and the best one out there IMHO. BTW I used Biotene toothpaste and mouthwash during my whole year of chemo and rads and I think it saved me a bunch of money at the dentist - my BFF told me about it as she didn't know about Biotene until she got a terrific case of dental disease (gums and teeth) and her dentist said that if she'd used Biotene she'd be a lot better off.
The biting lips thing - I swear it must be the season or something - I bit my inside lower lip yesterday eating an english muffin - geez! I'd be afraid to chew gum!
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Marybe, I don't mean to hijack your thread, but I just have to thank Chevyboy and Kaara for their kind words for me. And prayers from Chevy and offers of soup too ... this touches my heart beyond words. May you all be blessed to overflowing.
My situation may seem awful, but cancer in all its forms is terrible for all who have to deal with it. I am no more braver or stronger than anyone else who is afflicted by it. It comforts me when I drop by at BCO because the wonderful, warmhearted people who form the community here are such an inspiration, and are ever-ready to help. I don't know how you all do it, when you have your own crosses to bear. I cry with you and I laugh with you. Even though I may not post often, I carry you in my thoughts and heart, sending heartfelt energy your way, especially when things get even more trying for some of you.
May 2012 be kind to all of us!
((((Marybe and all the lovely people here))))
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MaryBe-found you! Hoping for great results. How long will you have to do tis before they checck to see results?
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yes, i agree. i took embend or whatever the real name is for nausea, only threw uo once.. from taxotere, which i know youre not doing..hahaha
the biotene is the best, for all of it.. glad you're not using that gum anymore, Barbe.. glad to help.. zylitol is ok for me, but i like the biotene the best.. just have a stock beside the bed, and in my purse.. off to bed, i go.. Hope all is well with you, Marybe. you KNOW your'e in my daily prayers....3jays
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The Biotene works well if you get canker sores too! The surfecant in toothpaste is implicated in canker sores.
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Hi Marybe, just saw your thread. I used all the Biotene products during chemo. The toothpaste is good, and I loved the mouthwash so much that I still use it today. Thinking of you and praying too!
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Today I had treatment #2. I told the onco about my foggy head and how one day it "almost" was a headache and how I have been congested....he said decadron can do that so he had the dosage reduced. Anyone ever heard that one before?....all I know is it used to really hype me up and give me lots of energy, but did not this time. I got emmend and aloxi as premeds also, but a little less since I told him I had no nausea. They had me suck on the ice chips when they infected the red stuff. I was not as tired during treatment this time and drove home, but my husband was there to meet me and followed me....we had lunch and I had a triple grilled cheese and fries....why worry about weight when I dont even know if this treatment is going to work....plus food still tastes fine so I am going to enjoy it.
When I got home I got out the box of Xmas decorations for the LR and started working on the mantel and the garlands.....got sidetracked by a light that would not work so dug around for awhile looking for extra bulbs.....then decided a nap sounded good so went to bed and Ellen was on, but I fell asleep and missed 3/4 of the show. TV has become a sleep aid for me, as if I need one. I woke up and had a big sore on my lip from the way I was sleeping on the side of my face and also a few canker sores so I slapped some kenalog in orabase on them.....have any of you ever used that stuff? It is prescription and a sort of old fashioned med, but I am telling you it works.
He was trying to tell me I could possibly have a cold and that could be the reason for the congestion and being tired, but I KNOW when I have a cold and if I do, this is not a typical one. I was thinking maybe my white count would be down and I would need some neulasta, but it was up to 5.4....more than a point since last week. Go figure.
Mthomp. he did say the antinausea meds could cause the constipation as you did and to get a head start on it and be sure to take my sennaS tonight which I have already done.
When I read about all the problems women like Chili are going through I consider myself to be very very fortunate. Other than feeling sleepy, I am really feeling quite good. Tomorrow I don't go to work until 1:30 so I should be able to get a lot of rest in before then.
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Had a good restful sleep, sweetie. I hope you are able to tolerate the rest of your treatment plan this well!!
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Love ya, Marybe! As you know, you've been a huge inspiration to me and you were the first person I interacted with when I joined this group. I hope, hope, hope that you are among that 20-30% that he quoted. I'd bet on it! I wish you warm and wonderful holidays... with few side effects. And a Happy 2012... let's count down those tumor markers!
xoxo
Rose.
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Marybe, sure hope you have nothing more than tiredness and a few canker sores to contend with during you treatment. Kick that cancer to the curb!!!!! Take it easy and don't overdo. You are always on my mind.
Love n hugs. Chrissy
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Marybe, I just want to thank you for including ALL of us on what is going on with you and I agree, we are all in this together. I wish you 100% success with shrinking the tumors in your liver and hope that you have little, if any, side effects. You have been living a very long time with this disease and are an inspiration to all of us!
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Not surprised you needed a little nap, Marybe. It's so common at this time of year. People cannot get a good night sleep, what with all those Sugarplums dancing in everyone's heads.
Yes, those are California Raisins. But a Sugarplum look just like a Raisin on steroids and they wear big clogs to clunk around in, hardly graceful at all. You just can't sleep thru' it.
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Oh no, you are telling me sugar plums have wrinkly foreheads like that....you are ruining my dreams!! I think the Reese's pumpkins I found left over from Halloween are keeping me awake tonight.....actually got the mantel decorated so there is hope that Christmas will be at my house also!!
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Have a good nights rest, Marybe. ♥
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Hi Marybe!
I have been thinking of you! I have done ac twice now, and do have to say I managed pretty well on it both times, although since I did the c with the a I don't really know what side effects were from which one. I am hoping it works wonders on you. My docs told me I had a 22-35 percent chance of a complete response to my treatment and guess what? I did! So let that red devil do its job for you! That is a good chance it will work. You are so much more energetic than me! Just make sure you take it easy when you need to.
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hi marybe: i fell asleep, when i was going to call tonight,, im glad yyour'e doing ok.. i had decadron, and we always went out to eat after.. yes, i was hungry, so i ate.. by the time i got home, i was sleepy (theyy said it could be the decadron) so i slept.. the fact that you decorated is a good sign.. we're all hoping and praying the 20[30 percent is right where you fall!!!!
be well , my dear friend....3jays
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Marybe...You know what? Like you said, "Face it, cancer or not, we are all terminal because none of us live forever." Since we all don't live forever, we must choose to make the most of each day that we have. I pray that all of us have well spent days and happiness always. Who knew that choosing life would be so hard? If anyone has the fortitude for living, it is you! You inspire me! From the bottom of my heart, I wish you and all of the sisters well.
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Hi Marybe, I'm glad things seem to be going well with you.
When I was being Red Bedeviled I ate popsicles during treatment - much more fun than ice water or ice chips.
All the best.
Leah
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Marybe: I pray your treatments continue to go well for you! You are a survivor...an inspiration to all of us.
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3jays, I was actually up around the time you wrote, but not for long. This time did not hit me like it did last week so I might be back to my normal batting around in the middle of the night for short stints like I used to do.....sort of hope not as then I would be tired in the day.
For all of you wishing me well and offering me little tidbits of advice. If I had not found this message board when I did I don't know what I would have done. You have been a valuable source of information and support. Leah, I lived on popsicles for awhile.....Edy's fruit bars. And Bak94, you have done it twice?!....I thought I read where you can only get a certain amount of adriamycin over your lifetime....you must not have met you quota yet.
I hope you all have a great day.....many of them. Marybe
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Just thinking of you Marybe....
Hoping you're taking time for yourself...xoxo
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