Has anyone started a forum for Chemo in Dec 2008?
Comments
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Horsercn: I'm surprised that your plastic surgeon is talking about the exchange surgery so soon after rads. My PS told me I had to wait six months for my skin to rebound after radiation. Even then, she's saying I'll need the lat flap procedure because my own skin won't be strong enough to hold the implant even with the Alloderm that she's already put in there.
Day #1 of my 2nd treatment with FEC. I'm woozy and starting to an upset stomach, as well as the mother of all headaches. I received Emend IV this time before starting treatment but it doesn't seem to have helped much. Supposedly it's the strongest anti-nausea med they have. I must just be very sensitive to this stuff. It will be a chore sitting through the chemo again tomorrow. Last time, I felt so bad by the 2nd day that I just slept.
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My insurance (BCBS) won't pay for a wig either. They wouldn't pay for one for my daughter and she has alopecia and will always be bald. Ticked me off!
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Hello Everyone
I am so glad I found you.I started my chemo on Dec2.I am getting T&C for 4 cycles every 3 weeks and then rad. I have been doing fairly well but really lost it today when my hair started coming out.I thought maybe I would not lose it since My Mom never lost hers with 8 treatments.I was diagnosed on the day (9/12/08)my Mom died eight years ago and felt like it was she who made me find the lump. Tomorrow is my 46th B-day and I guess I am feeling sorry for myself. My husbands and sons have been my rock and I am thankful for that. I am also thankful to NJ State since anyone getting a free mamogram in their cancer program and is found to have cancer they are covered 100% for all medical bills and prescriptions. I was self employed cleaning houses and have not been able to do much work (cleaning peoples crappy toilets is not recomended). This week my WBC was low and I had to have 4 days of shots of neupogen which caused the worst back pain I have ever felt in my life.I was screaming all night until I finally made a call to Onco to get something for pain. I guess I will get out the buzzer and give myself a new birthday hairdo. Thanks for letting me go on. My 2nd chemo is next Tuesday.....
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Cinda/Lisa - I'm joining your club after my discussion with the *#*@& insurance lady this afternoon -- they too won't pay for a wig regardless what you call it. Big time just annoys you - Blue Cross Blue Shield AL -- maybe just our crappy plan - but you can bet I am going to at least make our HR/Benefits Dept aware of it. And the customer service agent - just a warm, sympathetic, caring person......NOT! I know it's not HER decision or her plan, but she could at least be nice about it!!
Bren
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Cindyrellacleans - we all either have been or will be where you are today. My "big hair day" will probably be tomorrow since my first chemo was Dec 3. And I will cry, despite the fact that I know it's coming...and today when I talked to the insurance co about wig (excuse me, cranial prothesis), the customer service gal made me cry. No coverage and she made me feel stupid for asking her to double check. Your NJ program is awesome - cudos to the state!!
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Cindyrellacleans - You and I are on the same regimen starting on the same date. I started losing my hair last night so just gave myself a buzz cut. (The husband and daughter were out for the evening). Getting rid of the yucky hair was OK and I have a lot of hats...... and one uncomfortable wig!
Cannot believe that you were not given advice/meds for the neupogen shots. Excruciating pain is a common SE! Make sure you know the side effects of any meds...... that way you can be proactive with ways to make yourself comfortable. I've learned a lot from these forums and that has helped me avoid some of the pitfalls of chemo effects.
As far as wigs, check with your American Cancer Society; they have a wig bank here in my area for anyone that asks. I suspect that is true elsewhere.
Mary
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Hi Divas,
I have BCBS too and they don't want to pay for a wig either. I did go to the wig bank at one of the ACS resource centers. All they had was some really used up nasty looking wigs. If you live in a large metro area, there are probably several resource centers around you. Take the time to keep looking for the free wigs. Nice ones do come in but you have to be lucky to find them. That's what I've found here. I did order a wig from TLC. Someone on another thread said they are pretty nice. It isn't here yet but I'll let you know. They average in price from $40 to $150.
OK all you UP women. My sister lived in Houghton for about 7 years a long time ago. I remember going up there for New Year one year. Ya not the best destination the end of Dec. Anyway, it was the pasty talk that got me going. My sister makes such wonderful pasties. I might have to make some this week. Maybe. It's a lot of work. Can't get them here tho.
I went to the clinic today to see about the red adhesive spots that are getting worse. The nurse said it looks like a histamine reaction and told me to take Benadryl for a few days. If it doesn't get better to go back. More drugs. I took some around 11:00 today and slept until 4:00. I should probably save some posts for later tonight. I'm sure I won't be sleeping. By the way, the red spots are the same so far. Oooh, maybe I'll get pasty stuff ready tonight at 2 am.
I haven't been taking anything to sleep. Even tho I don't sleep well at night. I don't work right now and my kids are grown and gone. I can nap during the day if I need to. I'm just listening to my body and eat when I'm hungry, do stuff when I have energy and sleep when I'm tired. I can sort it all out and get back to a real world schedule when TX is over.
Cindyrellacleans, I'm so sorry your hair came out for your birthday. That NJ program is awesome! Hang in there with us.
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cindyrellacleans - I agree, I think your mom was watching out for you finding your lump. What a horrible date to remember though. I am sorry for your loss.
Well, I did it, I got through my first tx - DAY 1 - only a minor little reaction to the Taxotene and we stopped and cut the rate in half and I was fine. I thought I was going into full anaphalaxis, but just the breathing problems, flush face and a little lip swelling. It scared the crap out of me, but then I was fine. Leave it to me to be a bad student on the first day!!
I must say, not withstanding the side effects to come, it kind of felt like a little spa day. I had my daughters favorite fuzzy blanket, my trusty neck pillow, my ipod, a great book and I texted and read my emails. I started got there at 9 and didn't leave till 3:30 due to a slow start, the complications, etc. but I am good. I didn't realize though after, till my friend asked me what I was on because I was talking a mile a minute- steroid high. I had this huge burst of energy, played with the dog, took my daughter to celebrate my conquering of the chemo to Baskin Robbins. Now I am coming off my "speed".
I hope every one else had a great day. Only bad news, I have to get the dreaded shot tomorrow!! My WBC's are good, but my doctor doesn't want me to bottom out. Another thing to dread...
But, after my mini mental breakdown the last two days I woke up today in warrior mode. Cancer was my bitch today, thank you!
Lauren
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Lauren, so glad to hear today went well for you.
I can't believe none of your BCBS insurance pays for your wigs! We have blue cross blue shield (of DE) and it's covered. We're switching to BCBS (of NJ) next year, company decided it had better benefits. We'll see...
OK ladies, you're getting me hungry and I don't even know what they are! LOL! Can someone please tell me what pasties are? My MIL brought her brand new pizelle maker over last night and we made a big stack together, that was fun.
The way everyone hair is falling, the 14 day schedule seems to be true, which will put me bald just in time for Christmas! I've got to find at least one scarf, with my luck, it will all start falling when we're at the family party on Christmas Eve.
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I have not posted for a few days. Seems the 2nd tx knocked me out this time. I was pretty good until day 3 1/2 and 4. It seemed like I just could not get going. But since late today I feel my energy is starting to come back. It seems like I missed so many post that I had to catch up on. I had my period the day of my surgery and I have not had it since. I am not sure if that will have been my last one, as they say this treatment could put me into menopause. I guess time will tell.
Cindarellacleans: Seems we are the same age. I am on a different treatment, but I have to give meyself (or should I say my dh) neuopgen shots every day for 7 days after the treatment. Do you give them to yourself? or do you go to the dr.? I find that if I take the shot out approx. 30 to 45 minutes before I give the shot it warms it and does not hurt so much. Also I was told to take them only in the stomach. I did have some muscle and joint pain, but not like you described. My 3rd tx is Mon. 12/22. It just seems like you start to get the strength and it is time to start all over again. I go for tx every 10 days.
I wish all good luck this week and stay well,
Colleen
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Colleen - sorry to hear tx 2 was worse
OK bald divas
I'm not sure if any of you are aware of Walgreen's mail-in rebate program. Every month, they have a booklet of mail-in rebate and often have free products. Well, while I was there today, I saw that they have a free after rebate product call Bald Guyz! It's a soothing gel for bald people. I don't know if it works at all, but got my free bottle! I thought I'd let you all know.Going for my Look Good Feel Better
program tomorrow. I'm excited about it as I don't have a clue how to apply make-up so this should come in handy! Then I'll make a quick run at the Mall, got a few $10/$10 purchase coupons in the mail lately that I need to "spend". Gotta love Christmas for these 
Tomorrow will be a GOOD day
And that's the end of it! -
OK ladies, you're getting me hungry and I don't even know what they are! LOL! Can someone please tell me whatpasties are?
Cebula - don't feel bad, not many people know of them. I've met some Montana people that have them in their area..... but that is it. Pasties (and I am referring to Cornish pasties) are made with an 8 oz mixture of ground round, onion, potatoes, and seasoning; then wrapped in a type of pie dough. It then can be eaten like a turnover. Many people also like to add rutabaga, carrots, substitute chicken, etc .... but I don't like those combinations as well.
I'll let the other Yoopers give their favorite ingredients..... maybe we can make this a recipe forum as well!!!! LOL with our taste buds....... HAH!
Enjoy the LookGoodFeelBetter program, it was a hoot! I don't wear makeup and my daughter loved working on me. I can't remember when we've laughed so much together..... I'm hopeless when it comes to beauty.
Firni - I also lived in the ColoSpgs area for 7 years and giggled at your comment that the UP is a poor winter destination!!!!!! Yikes!!!!
Mary
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mmliv - That is pretty much the pasty recipe I use. I put carrots in mine tho too. You are right about the taste bud thing. Maybe I'd go to all that work and not like them.
I know that the miners in the UP would take them wrapped in foil to work and have a complete hot meal for lunch.
Caroline, my hair is scheduled to fall on Christmas Eve. I have visions of being at this dessert party and all my hair falls out like Charley Brown's christmas tree needles. I'd better dress extra sparkly and pay special attention to make up. That way I'll be so elegant that bald will be the new black. I have not heard of Bald Guyz but I'll go look for the rebate thing tomorrow. If I don't like it, DH can use it. He's been bald since his 20's.
I don't have a LGFB session scheduled until Jan 12. I do make up now but I wouldn't know how to find where eyebrows go or know where to stop when there is no hairline. I kind of scheduled my session around chemo so I was pretty sure I'd feel like going. So, now when I do go, I won't have any hair and I think I'll get more out of the program.
Colleen, having a treatment every 10 days has got to be rough. How many treatments are you doing?
Lauren, you go warrior. I hope you're SE's are minor. As far as the dreaded shot, ask your nurse to warm it a little for you. Much less sting that way. Also, if you start getting pain, call the dr. right away and ask for something to get rid of it. It can be miserable. I didn't call this time, but I will have a stronger rx for next time.
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Thanks for the info on those pasties, they do sound yummy. I make those meat pies for Christmas every year, it's kind of like that, but in a pie shell and it has cloves, nutmeg & cinnamon added to the meat. So good... but... haha, I made them all with my mom when they came to help out for the Lumpectomy, I figure I wouldn't have the energy after chemo started and didn't when it would start. We spent ALL afternoon making them, hubby is dying to get in them, and I'm saying NO WAY! Not before the buds are back. I'm so scared they will taste horrible and that it will ruin them for life, I've been eating them since I was a little girl, it's a french-canadian dish that gets eaten at Christmas time only, so we always look forward to them. Oh, did I mention I have 7 in my freezer... Next week I should be ok to dig in.
Firni, hope you get to keep your hair for Christmas, whatever you do, be sure to bring a scarf or something with you. I plan on buying a black for the "just in case" so that it would look ok with whatever I'm wearing if I'm not home. I was debating about the LGFB, but since it looks like I'll be bald on Christmas, I wanted to be able to fix myself a little. I told my SIL that when I'm bald, she'll have to come over and do my make-up every morning
Well... Good night ladies, I'm off to bed, once again, too late...
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Hi, I had a bi-lateral mastectomy on nov. 11 and I feel the scar is very tight...I only will think in reconstruction after all my chemo finish...today was my first chemo and I will have a 4 FAC every 3 weeks and 4 Taxo and Arimedex after that...I feel very sick and the pills for trowing up is not working...I have also a pain under my scar on the left side is like a needle poking at the muscle...
we don't have the onco test here in Canada only in clinical tests and for us to have the test and pay for it cost $3.600.00 so I will go with the chemo...My husband is very supportive of me and is in every appointment and doing a lot at home...I have 2 kids and 1 grandkid I love to play with, good luck to all of you and I know tomorrow will be better. God Bless us all...
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Mary that is pretty much what I remember in the pasties! Yummy!
Can you believe we don't even have a LGFB class here until mid February! So that won't help me. I'm due to start losing my hair this weekend. Going to have my daughter put my wig on so I can shape it up...and I can always borrow one of her many hats or scarves.
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Hi ya'll. I just wanted to post a quick tip I just discovered. You all know I buzzed my hair a couple of days ago.......Well, what stubble is left is falling out like crazy and getting EVERYWHERE! I had a thought.........masking tape. I rolled up some so the sticky side was on the outside, kinda like one of those pet hair catcher things, and rolled it around on my head. It picked up all kinds of loose hair. I guess I will be rolling my head with tape today. I can't stand the hair getting all over the place, or the itching!
Have a great day! Love to all.
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Great suggestion, Sherry. I have an old pet hair roller that I don't need any more since the current dog doesn't shed. Now I'll know what to do with the roller. Altho I never thought I'd add "rolling my head" to my grooming routine.
Chiquita, you should call your surgeon about the pain under your muscle if it is constant. There will be odd pains and sensations after the surgery tho. You FOR SURE need to call your Onco and get something else for nausea. In this day and age, there is no reason to suffer unnecessarily. You have a bit of a road ahead of you and I hope you're feeling better soon. It helps a lot to have a supportive spouse.
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Sherry, great trick. In between all of us, we'll be able to overcome this with everyone's tricks! I had read somewhere to wear those hospital nets to catch the hair. So little bit of rolling a few times per day plus the hair net should do it!
chiquita, welcome to the board. Where are you in Canada? I was born & raised in Montreal until my hubby found me and snatched me to the US
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chiquita: we had our surgery the same day! I'm sorry about the tightness. My tightness comes from my tissue expanders though! Be sure to let the chemo nurse know about the nausea and they can offer several different types of meds. I was prescribed two different ones.
msbusdriver: love the tape idea. I was thinking lint roller too.
I hope everyone keeps their hair for Christmas, then let the follicles fall where they may!
I am going this week to get some little caps, night cap, and some scarves.
Good night of sleep but woke up with heart burn up high in sternum and back of throat. Tums helped alot and sipped water fow a few hours. Well, my oj now tastes sour. Gonna move on to another juice... Not alot metallic taste today, so small favors there.
Had my handy wipes for the chemo release peeing. Man, thanks for that little tip!
And as far as these pasties, I am so boob centered right now, I am thinking the little stripper things! Man, I need a life.
I think ya'lls pasties sound like empanadas, huh? They also sound close to what Northern Louisiana calls "meat pies". I like pasties better, hee hee!
Lauren
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cindyrellacleans and chiquita sorry you had to join our December Diva Club. We will make it!
Updated list:
Texas357 1-Dec FEC+Taxotere
mimiwhite 1-Dec 4xTC
gts 1- Dec
meb 1-Dec 4xAC+4XTaxol
Colleen1960 2-Dec CMF
mmliv 2-Dec 4xTC
msbusdriver 2-Dec 4xTC
LindaBusEd 2-Dec TAC
vtmama 2- Dec 4xTaxol+C
shan1171 2-Dec 6xTAC
cindyrellacleans 2-Dec 4xTC
Brenny 3-Dec 4xTC
zuffa 3-Dec 6xTAC
Lindy58 3-Dec 4xTC
Catrenae 4-Dec 4xAC+12xTaxol
Lainey64 4-Dec 4xAC+4xTaxol
CindaD 4-Dec 4xTC
BreastCancerDiva 4-Dec 4xFEC+4xTaxotere
lisasayers 5-Dec 4xTC
simvog 5-Dec 4xFAC+4xTaxol
cebula 8 Dec 6xTC
sdavis 9-Dec 6xTC
berrypatch 9-Dec 6xTC
ptjen 9- Dec 4xTC
ShondaE #2 9-Dec AC
Meg511 10-Dec 6xTCH
Firni 10-Dec 6xTC
Lindy58 10-Dec 1xTC+3xAC
Colleen1960 #2 12-Dec CMF
ddlatt 15-Dec 4xTC
horsercn 16-Dec 4xAC+12 Taxol+Herceptin
apfuentes 16 Dec 4xTC
busqueen 16- Dec 4xAC+4xTaxol
iktracey 16-Dec 4xTC
chiquita 16-Dec FEC
Texas357 #2 16/17-Dec FEC+Taxotere
Kranie 17- Dec 6xTC
Bkokie 17- Dec 4xTC
LisainVA #2-17 Dec 4xTCH
Lainey64 #2 18-Dec 4xAC+4xTaxol
momof4stars 18-Dec? FEC+Taxotere
ENFENETEE 19-Dec 4xTC
mimiwhite #2- 22 Dec 4xTC
colleen1960 #3 22-Dec CMF
LindaBusEd #2 23-Dec TAC
mmliv #2 23-Dec 4xTC
msbusdriver #2 23-Dec 4xTC
cindyrellacleans #2- 23Dec 4xTC
Brenny #2 - 24-Dec 4xTC
lisasayers #2 26-Dec 4xTC
simvog #2 -29 Dec 4xFAC+4xTaxol
cebula #2 - 29 Dec 6xTC
CindaD #2 - 29 Dec 4xTC
DrDecker 29 Dec 4xTC
Firni #2 -30-Dec 6xTC
berrypatch #2 30-Dec 6xTC
sdavis #2-30-Dec 6xTC
ptjen #2-31-Dec 4xTC
Lindy58 #2 -31-Dec 4xTC
Dx 10/10/2008, IDC, 4cm, Stage IIa, Grade 3, 0/8 nodes, ER+/PR-, HER2- -
Good morning Divas. I'm feeling pretty good today. Tomorrow is my 2nd TX and of course I'm starting to get anxious again. Today is day 14 since TX 1 and still no sign of hair coming out. I'm so scared and anxious for it to begin. I just want to buzz it off now. I'm getting a little annoyed with my coworkers because everyone keeps saying "maybe it won't fall out". They don't know! I know they are trying to make me think positive, but it's easier to expect the worst. Then one manager made a comment about why I didn't bring in donuts today. I said "you're lucky I managed to bring ME in today". Then she made another remark that ticked me off. She's the boss so I didn't said a word. I'm in a little bit of a bad mood this morning I think... Sorry!!
Firni - your remark about the Charlie Brown Christmas tree cracked me up!!!! Thank you for making me smile.
Cindyrellacleans - I'm sorry to have to welcome you to our group. Your mom was definitely watching out for you! My mom passed away from cancer 11 years ago and I know she is up there rallying for me!
I like the tape idea!
Love, Elaine
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I had know idea what pasties were and I also thought it was the kind that Strippers wore! I thought you guys were starting to feel better and get a little Wild! He-He!
Tomorrow is day 14 for me........I'm going out to buy some duct tape, who ever said you can use duct tape for everything was right!
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Hi - Day 2 after 1st TC treatment. Why am I not getting this "high" from the Decadron? It seems to have the opposite effect....I'm tired today. Could it just be the drop in WBC that is already kicking in? I go to get my Neulasta shot this afternoon. I took an Ativan last night since I was feeling a little queasy and was expecting the Decadron to keep me up, so I slept like a champ, but today I've been dragging all morning. Is the fatigue already setting in? Sigh....
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Okay now I have to run our and buy pasties for dinner. I actually saw a commercial for them just yesterday and they looked so good then I get online and thats all you talk about. For those of you who have never had one its a treat. My first husband use to say that they were what made ketchup taste so great. lol
I am feeling good today. Not tired or cranky, a slight headache but not enough to even worry tylenol about. I was awake half the night not being able to shut my brain off but not paying for that today at all. Tongue hurts today and still not hungry but since I am a good hundred pounds too heavy skipping a meal or two isnt going to hurt me.
I had to stop with the orange juice it hurt my mouth. I cant do things that are too cold except milk shakes and nothing too hot. anyone else having the tips of fingers and toes tingle? Very sensitive to temperature changes and its been cold here so the other day I wore two pair of gloves. lol
Okay jabbering on today I just cant believe that I dont ache for my bed. yipeeee.
hugs to all and keep your chin up
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lktracey - And as far as these pasties, I am so boob centered right now, I am thinking the little stripper things! Man, I need a life.
The two are pronounced differently, but when I mention that little ol ladies (of which I am one in the summer) make them at the Methodist Church, those that don't know the difference get a bit of a shock!!!! LOL I looked up empanadas and those sound GREAT!
SDavis - I know my taster still enjoyed the pasty dinner, but no ketchup!!!!! Glad you are feeling good, nice to know that we early chemo gals are starting to feel better..... just in time for the next round.
Apfuentes - I doubt if the WBC is the problem yet, you could just be plain exhausted! Let yourself rest.
Mary
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okay ladies, I had to search for a recipe!!! Won't be making them now, but when I try them, I'll be thinking about all of you
I love this recipe website, here's what I found for those who wants to try them http://www.recipezaar.com/Upper-Michigan-Pasties-119068I miss cooking
Very thankful of all the families feeding us, but it's not like my cooking. Can't wait to try those. My buds might be coming back if I want to cook again Apfuentes, I agree with Mary, low WBC won't be hitting you until day 5-14. For some reasons, sitting in that chair for 3 hours makes you very tired the next day! Rest, take a nap, the one time in your life where people won't tell you to get off your behind
Enjoy it... yeah right! -
Hi All: I have what is going to sound like a stupid question - but here goes. Are people counting out from the day of of the Tx or are they counting starting the day after, I.e. is Day one the day of the treatment or the first day after? I had my first on Tuesday, 12/9, so is today day 7 or day 8 post Tx according to the way you're all counting?
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Day one is day of TX
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I am in trouble if chemo brain hits - today is Wednesday, not Tuesday, so I guess that makes me at Day Nine - closer to my no hair day than I want to be!
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