Has anyone started a forum for Chemo in Dec 2008?

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    Bobcat, I planned to find out what kinds of financial assistance there was for Femara when I went in for my Neulasta shot this morning.  But the clinic was closing up coz of the blizzard and there was no one to ask.  Just the receptionist and the shot nurse.  They were leaving as soon as my shot was done.  So can't help you right now.  If I find out more, I'll let you know.  And yes, I'm snug as a bug at home since 12:30 today watching DH shovel and shovel.

    Thanks, Lisa for the Zumba link.  As soon as I can do the Pilates with some conviction, I'll get signed up for Zumba.  Your photos looked great and I need a work out like that.  There is a place a mile from my house.  That's sweet.  Not surprised at all that your friend cancelled her classes tonight.  I can't imagine what the roads will be like after dark.  They're icy enough now.

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    Bobcat, try this link for Rx financial aid.  You might be able to get your meds free.

    http://www.freemedicinefoundation.com/?gclid=CPaMn8HXwZkCFRAhDQodNV0Vtw

    Sorry that should have been a link.  Here is the official Astra Zeneca patient assistance program site.

    http://www.astrazeneca-us.com/help-affording-your-medicines/ 

    I don't know how to make it a link. 

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  • colleen1960
    colleen1960 Member Posts: 226
    edited March 2009

    Hello all - had surgery yesterday.  A very long day left house around 6:45 am and did not get home until 7 p.m.  They had trouble starting my iv.  My veins are horrible.  Surgery went well.  Had the implant on the rt. side and and reduction and lift on the left side.  Was feeling pretty good until about 2:30 am and starting getting paind in my rt. shoulder down my arm.  Pain meds worked for a little bit but has you can see I am up early.  If pain persists over the next few hrs. I will call and ck. with PS and see if I can get something stronger.  Just wondering if anyone has expeirence this!!!  Well it is still early and I can't rest for another hour before kids have to get up for school.

    Check back later today,

    Colleen

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    Colleen glad to hear your surgery is over.  Sorry to hear about the pain.  My arms ached from being strapped to the table, but nothing that was too bad that I needed pain meds.  I just took some ibuprofen the morning after surgery and that was it.  What did they give you? 

    Get some rest!

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  • bobcat
    bobcat Member Posts: 681
    edited March 2009

    Firni - THANKS for the links - I will be looking into assistance starting next week.  I am picking up my college age son and his new girlfriend today - first time meeting her.  That's his picture with me...

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited March 2009

    bobcat I have no idea how you're dealing with this! After one night of full insomnia I was going crazy. Took a benadyl last night, slept for 10 hours but I still managed to wake up 2-3 times. Good luck with the insurance.

    Firni I forgot you are in CO. We finally bought a vanagon :) And we're getting it shipped from Parker, CO. We found a good deal, the kids don't know yet but I know they'll be thrilled when it pulls here in a week or so. I can't wait for our vacation this summer, I need it! Anyhow, the guy was telling us about the storm coming. Bundle up with hot cocoa and watch a few movies.

    Lisa Thanks for the website, I'll have to look into it when rads are over. I had to loose a few pounds before cancer, now I have 30 lbs to drop!

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    Colleen, I hope your pain gets better.  It's great to have that surgery done.

    bobcat, I hope the new girlfriend is great and you like her.  It is so difficult when a parent feels the girl is not right for her son.  Been there.  Thank goodness my son married a lovely woman and not some of those girls he brought home. 

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  • swest
    swest Member Posts: 680
    edited March 2009

    Colleen, I hope you are feeling better soon!  Call for better drugs!!!!!  I have heard that the lift is more painful than the implant.  Let us know how you are healing!

    Firni & Bobbi, I don't know how you are handling this insurance ordeal!  I think I would have to be admitted into a psych unit if I was having insurance problems.  My prayers are with you both.  I hope that you find the financial assistance to get you through this nightmare!!!

    I have a coworker who used to work with Americn Cancer Society, so I'll see if she can point you both in the right direction.

    Sonia

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Woke up at 3 a.m. with a nosebleed -- thank you Taxotere. The steroids are also giving me insomnia at least 1-2 nights a week. And don't get me started on the chemo brain! That's darned embarrassing at times.

    I can't wait to feel normal again!

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    Thanks Sonia for checking into things for us.  I did just find out that I was awarded a $1750.00 grant to help pay for my $2050.00 deductible for my first two chemos of this year.  Yea!!!!

    Texas, I don't know how long it's going to take to feel normal and taste normally and in general, be over all of this.  I know I have at least three weeks.  Don't know how long it will be after that.  But I'm with you.  I can't wait. 

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    I warned my husband: once I can start tasting food again after nearly 5 months, WATCH OUT! The first thing I'm going for is a hot fudge brownie sundae. Maybe lasagne. And a rich cup of coffee that no longer tastes salty. Woo hoo!!!!! That will be awesome.

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  • swest
    swest Member Posts: 680
    edited March 2009

    I hear you Texas!  I have been on a feeding frenzy since my last treatment.  I say eat away!  You deserve it!!

    However, I've gained so much weight that I'm heading back to weight watchers on Monday.  The fun has to end!

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    Well wine finally tastes good to me again!  It has been almost two months since my final chemo, but I had not tried it for about a month either.  But my taste is back to normal!!!

    Cebula, let me know if you try Zumba!

    For those of you who visit TimTam's photo site, I was able to post pictures since my exhcange to implants.  I'm very happy with the results!

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Great news on the taste buds Lisa! Today is my wedding anniversary. A bit of a let-down not to be able to taste a nice meal or wine, but knowing that I'm working to have many more anniversaries in the future is good compensation.

    Funny how the outside world sees us going through this struggle one way, and what we experience is so different. When I say "chemo" or "breast cancer" most people don't leap to the conclusion that one of my biggest pet peaves is not being able to taste anything for months at a time. :)

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  • bobcat
    bobcat Member Posts: 681
    edited March 2009

    Congrats Firni on the grant - who did you get that from??  Well, I positively love the new girlfriend - smart and funny and easy to talk to.  I'm relieved.  We had a lovely dinner with her, my son and my SO.  Lisa, I will have to check out your photos - so glad you like the new girls...  Enjoy you anniversary Texas - with or w/o the taste buds!

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  • colleen1960
    colleen1960 Member Posts: 226
    edited March 2009

    Still feeling a bit crappy today.  I thought this surgery was not going to be so bad, but I was wrong.  I just do not have much energy besides being so sore.  I am hoping that the weather clears up a little so I can take a short walk later.  I know the kids are planning something for my b-day tomorrow and I want to be able to be a good sport and do what they want.  Well I hope that everyone will be able to enjoy their weekend with little to no se's and it looks like we are getting closer to that spring like weather.  Enjoy!!!

    Colleen

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Colleen, go easy on yourself. Remember that your body hasn't had time to build up its strength from the chemo. That may be one reason why you're feeling this surgery more than you anticipated. The good news is that you're only going to feel better from this point forward!

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    Bobcat, I got the grant from the Patient Advocate Foundation Co-pay Relief.  The women in the billing dept. at my chemo clinic submitted my name.  Here is a toll free number if you want to check them out.  866-512-3861.  I'm glad you like the girlfriend.  

    Colleen, I'm sorry you're still feeling low.  Texas is probably right and you aren't fully recovered from chemo yet and that's why it bothers.  I do know that having a healthy breast (or Native Breast, as my PS calls it) makes the surgery a little harder.  I hope you can enjoy your birthday tomorrow.

    Texas, we had KFC for our anniversary dinner this year.  It was about all I knew I'd be able to taste at the time.  DH is such a good sport.  Now even the flavor of KFC is gone. 

    Lisa, I checked out the photo forum.  You are looking great!  I hope mine turn out as well.  I'm glad you can taste again, but 2 months???  Yikes.  That seems endless to me at this point.  Fruit and veggies are getting old.  That's about all I've had for the past two months.  

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    Oh Firni my taste was probably back after a month....but wine was still tasting funky for a while...I haven't had a glass for a while, so I don't know exactly how long it has been! 

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    Well, thank goodness.  I might have turned into a rabbit.

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  • havehope
    havehope Member Posts: 503
    edited March 2009

    I found this message on another forum.

    ====================================

    Timtam wrote:

    Hi everyone,

    As I posted the other day, I was trying to make a list of our stage IV sisters with their contact information including their emergency contacts. Been working on it and finally I can tell you that it's done! The only difference between what I originally suggested and what now I think is that I would want this to be available for everyone (not only stage IV sisters but everyone on these boards) who wants to join. I have already contacted Melissa and made sure neither making the list nor posting about it is against the rules. So now it's official. I will explain how this works.

          

    The link to the website is http://tamako.milkcafe.to/luv/AddrBook/addybook.cgi

                 

    On this page, you post your information by yourself. Of course you can see all the information posted on the page as well so that you can send stuff to those in need or do a card shower. It is easy as pie so do not worry. I have prepared several fields where you can fill in the information about yourself. Some of them can be left blank if you want. If there's anyone in particular who you communicate with here on BCO and would want them to contact you or your emergency contact if you went MIA, you can specify the name of that person and notify them of that. If you are registered by someone else as their contact person, you will check in with that person and give us an update if asked.

                    
    To protect information from identity theft, this website is password-protected. You need to PM me for the details on how you can gain access. (Do not PM me with your information. You need to post it by yourself.) However you will not be given the details unless you are either:
    1. a member of these discussion boards on BCO of 6 months+ and have made 30+ posts
    2. a member of these discussion boards on BCO of 2 months+ and have made 40+ posts

               

    I apologize that this may sound a little too unfriedly to those are new here or haven't posted much but as a person that manages everyone's personal information on this website, I am responsible for protecting their personal information from being disclosed to an unauthorized third party. Your understanding will be appreciated.

             

    I hope this help us unite as a worldwide family and make our bond even stronger. PM me for the details or any questions.

             

    Hugs,

    Fumi

    ==========================================

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  • bobcat
    bobcat Member Posts: 681
    edited March 2009

    Firni - I was just all over the Patient Advocate Foundation website - thank you, thank you.  I am going to get started my research with them right away.  I have so much insurance investigation to do before July it's making my head spin.  I just found out that in PA BC/BS has to provide you with minimum policy when your COBRA runs out and have a preexisting condition but it doesn't have to be cheap or convenient - we'll see.  Thanks Sonia for any help your friend can send my way too.

    Colleen - please take it easy.  I am recovering from my nipple recon surgery last week and can't figure out why I feel so crappy and tired.  Well, it is because this surgery came right on the heels of my last chemo and I'm just not my strong self.

    Lisa - I went to spin this am and remained seated but I'm going to try Zumba as soon as I can let these girls shake again.  Thanks everyone for all the support.

    Bobbi

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  • swest
    swest Member Posts: 680
    edited March 2009

    Thank you for the update Simvog! Smile

    Bobbi - You are so strong!  All ready spinning!  WoW!!  You are my idol!

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  • colleen1960
    colleen1960 Member Posts: 226
    edited March 2009

    Hello All - almost 4 full days since my surgery and I can't believe how much better I feel today.  I am still very tired, but the pain is almost gone.  Still sore and my back hurts from constantly sleeping on it, but definitely better.  My kids were busy yesterday in another play at the local Bible Church and after that they took me for ice cream for my B-day.  By the time we got home, I was definitely ready for sleep.  Well I hope everyone had a nice weekend.  The weather seems like it is only going to get better.  Looking forward to the temps hitting 70's soon.  Hope everyone has a nice week ahead of them.

    Colleen

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  • BonnieK
    BonnieK Member Posts: 655
    edited March 2009

    Great news, Colleen!  It sounds like you are getting better very quickly. I'm sure it was fun for your kids to be able to take you out for ice cream to celebrate your birthday.  Happy B-Day! 

    I'm just 4 days away from my exchange surgery and am feeling mosttly excited and also a little anxious about the actual surgery and recovery.  It will be so great to be rid of this tissue expander and the chemo port and to have squishy boobs again that actually "match", or at least aren't totally lopsided.

    Keep feeling better every day...

    Bonnie

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    Colleen sounds like you are doing great!

    Bonnie...your exchange surgery will be a walk in the park! 

    Make it a great day everybody!

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  • bobcat
    bobcat Member Posts: 681
    edited March 2009

    Lisa - still trying to figure out how to view your photos.  I am so far pleased with my foobs and now waiting for the fipples to heal - I am ready to wear some real clothes that don't cover over bandages or hide nipple donuts.  I am even spinning in a big old man's shirt!

    Colleen - glad you are feeling better!

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  • swest
    swest Member Posts: 680
    edited March 2009

    Bobbi & Firni - My co-worker (who used to work for ACS) is asking if you both are < 65?  Apparently there are different organizations based on age.

    Thanks!

    Sonia

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    bobcat, you have to PM the member TimTam and she will tell you how to get to the photo site!

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    swest, I am younger than 65.

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