Starting Chemo May 2008
Comments
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Roxi-
I'm a bit behind again in reading, but wanted to get this off to you. If the destination hasn't been changed, I'm all for Volcano National Park on the Big Island!!! I've actually been there, and have hiked WAY out to see the lava, and it was amazing!!! I'd love to do it again!
I have to go pick my son up from soccer camp, and will try to catch up later. I had the stomach flu over the weekend, so I didn't do much of anything!
Sharon
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http://www.nytimes.com/2008/07/02/dining/02mlis.html?scp=2&sq=101+picnic&st=nyt
101 fast recipes for inspired picnics.
Angels; My eyes burn, burn, burn too. Refresh Liquigel makes an eye drop for moderate-to-severe dry eye. I also use Refresh individual-use wetting drops. Easy to keep a couple of them in each bag, backpack, jacket pocket. (And yes, Linda, my eyes sometimes stick together in the morning. What is UP with that???!!)
Sharon, sorry abut the stomach flu!
Drugstore.com carries the udderly smooth cream w/ urea ("extra care cream") that is recommended for HFS. And it's pretty cheap, too! (I am ALMOST as excited about this purchase -- tho it hasn't arrived yet -- as I am about my crocs.) Yes, it has come to this. I am buying cream that contains urea and I am happy about it.
Fingers have edema. Big toenail has turned brown. Taxol #1 is only a week ago! I think I'm an "outlier" though. And I DO feel FINE otherwise.
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KristyAnn,
I'm north of DFW in a small town called Haslet. INSIDE the metroplex, unfortunately. Tyler is not very far, maybe 150 miles. (That's close for Texas)...
Sable, I am sorry you were/are feeling whiney. Hope it gets better, but whining is definitely allowed. This is NOT fun, what we are doing.
Linda, I love the peaches too. They are small but very delicious...as a matter of fact I think I'll go get two right now to eat. Mmmm..
SharonF, sorry about the stomach flu, hope it getes better...although not doing much of anything does dound good!!
Rock, sorry about your big toenail and edemalicious fingers. (Whoops, made up an adjective..sorry).
Love,
Sue
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Sable - That is the beauty of our fine group...you can whine all you want (no matter how big or how small) and we get it! Furthermore...its OK! I hope your day has gotten better.
Angels - my first week following each AC tx I had horrible dry eye. Opening them in the morning was hard. I started using wetting drops before bed, first thing when I get up and at various times throughout the day. It helped alot.
~Adrienne
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Angels,
I think the crusty piece is because we have fewer or no eyelashes and they act as a filter. I have the crusty yukky eyes too in the morning, and a little itchiness, but then it goes away....hope it doesn't get worse and try a cool washcloth in the morning maybe over your eyes to get you going? I will too and we can report back to one another.
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Ladies,
Boy it took me awhile to catch up. I was three pages behind. Love the lyrics ladies, all so creative. I'm so sorry to hear about all the SE's. I'm thinking and praying for fast relief. Had my second heart scan today. Start taxotere and herceptin on Wednesday-4 doses. Not looking forward to a five hour drip, thank you very much. Okay, crazy question they ask at my blood draw, last period? Geez, March maybe? Can't say I miss it. Think it'll come back?
Okay, Eddie, what's glutamine used as a dietary supplement for?
Sharon, I'm with you at Volcano National Park.
Angels, my weepy eyes started around AC #3, that and my drippy nose (very attractive aren't we) Ha! At least the eyes are only in the morning. My nose drips whenever I don't have a tissue.
I'll try to keep up more often. I had such a long weekend. We had Summerfest in Milwaukee this past week. It's the largest outdoors 10-day music fest in the states. Had a ton of fun but wore myself out something fierce. Playing catch-up now. Saw some great live music and drank a few beers. It was nice to feel a bit normal again. P.S. Welcome to our new friends!
Roxi
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I'm baaaaaack...lol
Okay, last night at about 1 am, I was lying in bed, praying up a storm and trying not to groan, when all of a sudden, I get this itchy feeling....yup yeasty itchy feeling. I get up, (TMI ALERT) put on a pair of solid black panties, and go back to sleep. When I wake up, presto chango, a very very very very very slight white discharge...YES!!!!!! I have the bugger now. Got my diflucon this morning, after calling the onco, and crossing my fingers this does it. They think that it might have started as a yeast, turned into sores, then back to yeast. Becaus the mouthwash didn;t help that much, they think more yeast. Either way, it is still sore, but I managed to get to the store and buy my pound cake, whipped cream and more strawberries...lol..plus wait 1 1/2 hours for Wally world to fill the prescription. WHY? Because my insurance will only pay for the name brand, not generic and they were the only ones in town with the magic pill.
Yes, I did stock up on diaper wipes, tucks and some vagisol cream to dull the pain.
My onc says that she will now add diflucon to my list to take day 5 to see if that will stop it from re-occuring next tx.
So, no tx this week, they are too afraid what I will turn into...lol..my mini vacation from chemo...whoo hoooo. Actually today is the first day I feel more like me, so I will really enjoy the 1 week break, especially since next week is the last A/C before Taxol. She did warn me that she has all her patients take either Vicodin or Darvocet for the first 3 days because of the bone aches. I am not sure how I feel about that, I hate pain meds and the wonkiness they bring on plus the added benefit of more constipation.
Rock: hope your feeties are better....
Stop all the talk about peaches, they wanted $2/lb t the store, so tomorrow when my girls are babysitting at churc, I will sneak away to the local orchards and stock up!!!
The only thing I have been watching is the Food Network and Alton Brown made an incredible apple pie using a tart pan and I want to try it with the frozen berry mix I get at Costco. Just ned to find a tart pan now!
Kristy: Abby was so excited, they ended up playing 3 games yesterday in 104 temps. They won the first 2, lost the last, so that's the season for them. But they did get higher in the tournament then any other team ever from our town....Daddy was so proud, she talked him into rewarding her with her own BB gun. Can you tell we live in the sticks????
Take care everyone and thanks for all your prayers and thoughts, they worked!
So, that's all she wrote!!!!!
randie
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Roxie,
Am getting more info on Glutamine, but it's supposed to be very, very, very good for taxol and herceptin....I will find out the scoop and let you know. Remember, you're taxotere and I am taxol. They are both made from the Pacific Yew tree. They are similar but have different side effects (slightly) they tell me. People tell me that if we got through A/C, taxol and taxotere are both easier. I hope that is true. Glad you had fun at the festival.
Randie, Glad we are getting to the bottom of the problem. Healing wishes to you .... Rock...hope the feet are even better today.
Woke up feeling kind of yukky, but yoga helped. Talk to you all soon.
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Boy, it took me forever to get caught up! But what a riot it was! You all are AMAZING women, and I know I don't post much, but I'm glad to be a part of this group. I laugh and cry at the same time reading all of this.
LOVE all the lyrics that you're all creating, especially "America." I printed that one out and am taking it with me to chemo tomorrow!
Rock and Randie-I'm so sorry that you've been going through so much pain. Each time you both post, I'm hoping to read that you're better. Soon...
Tomorrow is #4 for me, and it's my LAST one! I'm graduating! For some weird reason, I'm more nervous about this one than any of the others. I hope nothing major happens.
Roxi-Don't forget to bring plenty of water, we're going to get mighty thirsty out there hiking the lava!
Sleep tight, everyone. Maybe I can get to sleep before the steroids kick in????
Sharon
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This is gonna be brief 'cause I got to get some sleep for Mickey...
Randie - So glad you got it figured out - part of the weirdness of bc is knowing what stuff is! Just an FYI - I have gotten "yeasty" after both txs and it I was able to catch it fairly early. However, it took 2 doses of Diflucan to stop it. You didn't mention if it was one pill or two (and I don't know how it is normally dosed), but just thought you might want to know because it may take more than just one pill. But at least something's in there sworking!
Rock - I really hope you got your cream today. When's the next tx for you?
Eddie - I don't get a check in, but the PA comes around during the infusion. I will get a regular appointment with him before I switch to Taxotere. Actually, he's usually there and wanders out into the room where we are, so if I have a burning question (sorry, Randie!), I can ask.
Sharon and Roxi - Good luck tomorrow! Remember your sunblock!
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Today seems to be a bit brighter day. My heartburn has let up somewhat finally, but now I am developing the "2 days before tx" jitters.
Cris have a fabulous time at WD! I want to take our son before he gets "too old" to appreciate it.
Story of the week.....
Well I have been waiting for the past 30 days for the wig store to release my wigs. My insurance company will pay up to $300 for wigs and I had 2 picked out. My hubby called on thursday to see if they had gotten payment yet for the wigs. It was a no of course. But the lady said we could come in and give them a credit card number and they would let me have one of them. Not a big deal, I was ok with that. BUT...... after many phone calls back and forth with my husband. It turns out that the total, after the provider discount, was only $117. So hubs went down to talk to the people that dealt with it (his work is self insured) and they said I shouldn't have to wait for these wigs so they gave hubs cash so we could just go pick them up. Hubs called the store back and the lady said she wouldn't take the cash and that we would have to pay the entire amount, including the provider discount, then when/if she got a check from the insurance it would be marked paid. ($234) She doesn't give discounts if you pay cash for them..... huh??? So hubs argued with her about it and it turns out that if we paid the full amount ($234) she would get that plus the $117 from the insurance!?!?!?!? Then to top things off she told hubs that the foob we had gotten and the 2 bras the lady that waited on me subtracted the tax instead of adding it to the bill and she said we owed for that as well!?!?!? Well the foob and bras are completely paid for by the insurance as well. I told hubs just to cancel the wigs altogether and I would go without. And by the time that we submitted another claim for a different store I would have hair growing back in already.
After many hours of frustration for hubs and his company, they are going to turn this lady in and have her insurance contract ripped up. It's bad enough to go thru what I am going thru without the added harassment of somebody trying to get more money out of you. -
Yup, Sable, sounds like insurance fraud to me. Good for you to have the patience to struggle with all that (plus your BC!) and then to have to bail out in the end.
This is for eddie: Fun facts about Taxol (paclitaxel) and Taxotere (docetaxel):
Taxol is no longer made from the bark of Pacific yew trees, which was its original source. In fact, it's no longer made from yew trees at all. It's extracted and purified from the tissue culture fluid of plant cell cultures. Bristol-Myers Squibb won a "Green Chemistry" award for the procedure a few years ago. This site contains a really neat, readable description of how they make it:
http://www.epa.gov/greenchemistry/pubs/pgcc/winners/gspa04.htmlTaxotere was never made from the Pacific yew tree. It was developed in the 1980's as research was underway to find alternatives to the use of Pacific yew bark for Taxol. Here's what the Taxotere website (www.taxotere.com) says about the source of Taxotere:
"Taxotere® (docetaxel) is a semisynthetic derivative of a compound isolated from the needles of the European yew tree (Taxus baccata). It was identified in 1986 as an alternative to paclitaxel and comes from a renewable resource."
So, neither one of the drugs requires the use of Pacific yew trees anymore, which is a good thing. Even now, several companies are working on synthetic sources of the taxanes, to avoid use of plant materials entirely.
otter
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I remember when I had my chemo class prior to tx that they had mentioned that Taxol used to be made from the Pacific Yew Tree. I simply asked...Then can I just bypass all this and go hug a Yew Tree? Guess thats a No?
~Adrienne
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Damn. I really liked the idea that it was made from a plant. (Though the image of an infusion room filled with Pacific Yew trees and women clinging to them for 3-5 hours is quite amusing!)
RanD -- so relief might be on the horizon? (Be still my heart...)
Sable -- PISSES ME OFF WHEN PEOPLE TRY TO PROFIT OFF OF SOMEONE ELSE'S PAIN.
I was able to walk for a mile this morning and wound up with 2 more blisters. Rats. Think I'm going to see if someone in my building has an exercise bike they'll loan/rent me or a few months.
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I think if you just climb up onto those cliffs overlooking the Pacific Ocean, and sit under a yew tree, that should be enough. You'll have to breathe deeply, of course, because the "essence of yew" isn't very concentrated. And it will take awhile to get the same level of efficacy you would have if they infused the stuff i.v.; but think how much more pleasant the treatments will be? (That's assuming, of course, that the Pacific yew trees aren't in the burn zone of the California wildfires.)
Rock, don't feel bad that Taxol isn't made from a plant. It is, sort of: it's made from the cells of a yew tree that were collected and established in cell culture a long time ago. If you believe in renewable resources, sustainable agriculture, and all that stuff, then the way they make Taxol now is a very good thing for us, for the yew trees, and for the planet. (Wow. Where did all that come from? I used to be a Republican.)
This is old news by now, but in regard to the onco re-checks: I had a standing appt with my onco right before each chemo treatment. I would go to the lab an hour before my onco appt to get my blood drawn, to check wbc, hemoglobin, etc. Then I would meet with my onco and we would go over the results, my SE's from last time, etc. After that, I would go to the infusion center (which was in the same hallway) for my chemo tx. Things were going so well that my onco decided I didn't need to meet with her before my last tx. I did see her nurse, who told me my lab results were great and they tweaked my pre-meds just a bit. I will see my onco next in August, for my 3-month post-chemo follow-up.
Hugs to everyone, especially those of you with sore feet, sore bottoms, sore bones, sore mouths, sore fingernails, sore scalp, whatever. How come nobody told us how much chemo would hurt?
I need to go pack for our trip. My dh and I are headed out west to visit his family, after we stop by my cancer center tomorrow for my DEXA bone density scan (have to be careful to distinguish that from a BONE scan).
otter
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Sharon,
Congrats on graduation! How excited you must be. Good luck...
Sable, Can't believe your story. My insurance carrier won't even cover wigs. What's up with that?
Otter, good luck with your bone density scan and have a great trip, so jealous!
Roxi
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Hmm thought..... is a yew tree a type of evergreen? Makes me wonder..... I am allergic to real christmas trees... think I should bring that up before my taxol?
Actually its the store that is trying to suck more money out of us. My husband's company is self insured and they were there handing hubs cash to pick up the wigs (their idea). Its that lady at the store that wasn't going to have it that way. They are going to turn her in and have her insurance contract terminated. Hubby is the one who had the paitence to deal with it.
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I just have to vent.........First I must say that my office has been wonderful about all the time I have been out and I am covered by disability. I am down to having around 30 hours left of paid disability. I have been working part time through chemo - I work until I am tired. With only one treatment left I was feeling pretty good with the time I had available. Yesterday was the first time I missed an entire day - I was just wiped out. This morning I go in with the goal of staying all day as I have to conserve those few paid hours I have left. As I walk in I knew something was wrong - NO AIR CONDITIONING. 8 am and it must have already been close to 90 degrees in there. My doctor has been very clear that I am not to be in the sun and not to get overheated. I made it for 2 hours and had to leave. I Just checked my e mail and they aren't even sure if we will have it working tomorrow. UUGGGHHH Now I am going to quickly use up those precious hours I have left. Okay I ranted and got it out of my system. Thanks for letting me vent! Guess I will have to use my vacation days. Like I tell my kids, life isn't always fair. I think I'll go eat some cookies, that will make me feel better.
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I'm back from Volcano National Park. The "chemical" lava flowed beautifully! My only problem was that my port had enough of a clot initially that it wouldn't allow blood to be drawn, but meds, saline, chemo and heparin infused with no problem. We used an arm vein for labs. Of course, when it was all over, blood drew just fine from the port. Those toxic chemo chemicals will bust any clot, I guess!
I'm just so happy to be DONE! You know how you feel in the beginning, like will this EVER end? Sooner or later, it does. In 3 weeks, I will start 33 treatments of radiation. I'll bet they're not half as much fun over on the radiation board! I don't post much here, but I LOVE reading all of your posts.
Roxi - Don't you go tomorrow? Or was it yesterday? Sorry, I forgot! Enjoy the view of the lava, and be sure to take a lot of water!!!
Sable - Sorry about the insurance mess. One more thing that we DON'T need. My insurance doesn't cover wigs either.
Otter - I LOVE the idea of sitting under Yew trees overlooking the Pacific Ocean. I'd settle for going anywhere about now! Have fun on your trip!
Back to the topic of FOOD...I made a really YUMMY peach/blueberry cobbler tonight, while I still had enough energy!
Have a GREAT night, everyone!
Sharon
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You ladies have always been here when I've needed it and I really need it now. Someone has posted a recipe for chocolate cheesecake rocky road brownies. I wasn't tasting when it was posted and I figured I'd come back and print it later. Now I can't find it. Was it here? If someone would be so kind as to lead me to it, I would be grateful forever ( as would my dh and dd.)
Thanks, Lee
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it might be on Laughter board. And AlaskaDeb is the culinary genius!
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Lee,
It's the road to Hell
Page 14, and as Rock said AlaskaDeb wrote it.
Enjoy the day, Karin
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There are rocky road cheesecake brownies on the road to hell? Why am i not surprised?
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Lee, You obviously have your taste buds back. That sounds so delicious. I have been such a pig since I started tx. Those 6 small meals a day put a few pounds on me. I'll weigh in tomorrow.....and check out the recipe tonight.
Roxi
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Why, Sue, of course there are!
Lee, if you can't find Deb C's (AlaskaDeb's) post with the recipe, never fear--I copied and pasted it into a Word file, and it's sitting right now in my "recipes" folder on my computer desktop. Unfortunately, it is not sitting in my recipe box in the kitchen, where it's a lot more likely to be used. Oh. On second thought, maybe that's a good thing.
Debbiem425, I think you should request special dispensation or something. Where I used to work, when the AC went out and the temperature got up to the "intolerable" range (and in Alabama, that doesn't take much), they let us go home and didn't charge us a day of vacation or sick leave. It was considered their fault, since the building was supposed to have AC. (Got to be clear on this--we're talking about "air conditioning", not the other AC.) I'm not sure how the Human Resources people dealt with that. Perhaps they never knew about it, and it was just something my boss let us do.
Sharon, this trip I'll be on isn't as far west as the Pacific yew trees--not unless they grow in Oklahoma, which I doubt. My dh and I are visiting his family in the Tulsa area for a few days. It will be the first time I've seen any of them since my dx in January, so I'm a little nervous. They are really great people, though--funny and supportive, and very comfortable to be around. We'll have a great time, even without the yew trees and the mist coming off the ocean.
otter
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You are ALL the best. I knew you would come through for me. That's the only place I didn't look. I know everyone in this house will be eternally grateful to you. Yes, my taste buds are back and I know that I"ll pay for this, but you only live once.
Lee
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YEW are all the best. I worked all day then picked Adam up (actually, dh did) then we went out for dinner then the movies (WALL E)... will take all that yew stuff into account tomorrow when I am awake. Thank God for Otter...our fact checker, myth buster. I think my onc told me it was made from Pacific Yew. We'll talk again tomorrow. Hang in there women....I have lots or ringing in my ears.....aiiii aiiii aiiii .... Good night.
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OMG! I'm not sure how I missed that recipe! I'm thinking it isn't very WeightWatchers friendly. HAHAHAHA! Well I saved it anyway. And I WILL try it.
Sable - excellent question on the Yew Tree and I would've never thought about it. The Yew is considered an evergreen, from what I Googled.
Happy Humpday everyone!
~Adrienne
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thanks for your help with the eyes ladies, i picked up some tears and they seemed to have helped. I went up to see my onc nurse when i was at the hospital for my ultrasound and being the worry wort that she is had me do a blood test just to make sure my counts were up so it i had an infection or something in the eye i could fight it. My counts were up and she said to just go ahead with the tears and if it gets worse to go to the doc.
Took my first two decadron and I go back in to today for my pre-chemo blood work for tx #4 ...#1 of taxotere tomorrow. Anyone else going in tomorrow or am i flying solo? I missed the volcano park flight so thought I've always wanted to go to Ireland, the rolling green hills, sheep in the distance and the ocean just seem so peaceful to me! So if anyone else is on tomorrow i will save you a seat in a quaint Irish pub overlooking the fields of heather.
Hope every one can see the light at the end of the tunnel cause mine is just coming into view!
Have a great day...
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Angels, enjoy Ireland! (It IS beautiful.) I hope the artificial tears continue to work for you. The trick does seem to be to keep the eyes moisturized and not wait until they burn to put the drops in.
My light in the tunnel might be attached to an exercise bike (easier on the feet than walking) which I HOPE I am picking up tonight. (Fingers crossed that it will fit in a cab!)
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