Orlando Chemo ladies?

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HomeMom
HomeMom Member Posts: 1,198
edited December 2014 in Chemotherapy - Before, During, and After

It's great posting on here, knowing I'm not alone! My BS gave me the names of two ladies who have been through it all locally and I have connected with them. They however, went through this 2 and 7 years ago. I am wondering if there are any ladies here who live in the Orlando area and are in the treatment phase or just finished would be fine. 

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  • lbrewer
    lbrewer Member Posts: 766
    edited June 2014

    I am an orlando BBC survivors as well.  I want to get the word out that theLivestrong Foundation know has classes for cancer survivors at four area YMCA   Didn't post very well but the locations and contacts are below. It is a free 12 week program for cancer survivors

    For Funding and PartnershiP oPPortunities,
    ContaCt John Cardone

    at 407-644-3606.

    For indiViduaL FaMiLY Center PrograM
    deLiVerY Questions, ContaCt:

    CrosbY: brittanY dixon, 407-644-3606
    downtown: sCott horns, 407-896-9220
    Lake nona: Jen bruMbaugh, 407-852-3520
    Frank deLuCa: niCoLe orr, 352-368-9622

    page1image17064

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited June 2014

    Homemom

    I'm too a bc fighter in the Orlando area. I went through chemo in 2010 in Houston, TX I was able to continue working even though I lost all my hair but the fatigue wasn't so bad. I even rode the public transportation system! Any way, I am Stage Iv now but continue to live one day at a time with positive thinking and the treatments I plan to live for many more years. If you want to pm me to make more local contact let me know.

    Aurora

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited June 2014

    lbrewer thank you for that info. I had heard about it, but I don't know if the Y near me has it, I am going to look into it. Maybe if I click on your link it will help? ;)

    Thank you for your response auroaya. Who were your doctors? I am thrilled with mine, they seem to be very thorough. 

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited June 2014

    Home Mom

    I don't remember the names of my doctors in Houston. My onco here in Orlando is Dr. Stefani Capone in Winter Park and she is a gem I highly recommend her and her team. I'm getting zometa iv's and the nurses are fav and the clinic has helped with free samples of arimidex when I ran out of insurance. Who do you see? What side of Orlando you live on? I live on East Valencia College and Econolohatchee and I don't have too many friends since I moved from TX in Dec 2012 and then in 2013 I got sick. I would love to converse with you more and others too.

    Aurora

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited June 2014

    Hi Aurora

    I travel into downtown to go to Dr. Shroff with Orlando Hematology and Oncology.  I live actually on the west side of Orlando so it takes me almost 30 min to go to the doctor. My BS is also in Winter Park. I go to N. Orange Ave. THe BS was referred to me from my Gynecologist. 

    I believe they have the race or walk at least once a year and everyone goes. Keep in touch and maybe we can meet up then! I don't get over to that side very much (Milenia Mall when I can!) 

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  • lbrewer
    lbrewer Member Posts: 766
    edited July 2014

    homemom,

    The largest livestrong program is at the Y by your Onc office.  Dr. ZEhngebot is my onc but I saw dr schroff once as well.  I live closer to lake Nona but May end up at the winter park classes since they can't seem to get enought people around here. 

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    ibrewer I called the number at the Orlando Y and left a message and never return my call. I live closer to winter park can you give me their contact information? Btw my onc. is Dr. Capone and she shares practice with Dr. Z in Winter Park. In fact Dr. Z consulted on my case when I was in the hospital. I would love to join the program at the Y and maybe even get to know you in person.

    Aurora

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  • lbrewer
    lbrewer Member Posts: 766
    edited July 2014

    Here is the info i was sent when my emails keep coming back. 

    It doesn't look like the emails are going through to Brittany for some reason (mine bounced back as "undeliverable" just now). The Orlando Y's website lists this phone number, which may be a better way to reach her: 407.646.7000 ext. 3788. I just called and left a message at this number; it is a Winter Park hospital number, but when you type in extension 3788, it does go to Brittany's phone line (looks like she is shared between the hospital and the Y). I asked her to keep an ear out for a message from you. I hope you're able to join a session soon!

    PM me and maybe we can get together. It would be nice to get a group together?

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited July 2014

    I have my last A/C treatment on Friday so I don't know when I should start this.  I have 6.5 weeks of rads after that is done. I live in Clermont but will be going out there until mid November with the rads. I made friends with a girl who went through all this 7 years ago and we have lunch whenever I've felt well and had an appt out that way. Is there a place you need to be in treatment, or after, that is recommended before you start this class?

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  • lbrewer
    lbrewer Member Posts: 766
    edited July 2014

    ask your onc and radiologist but many recommend exercise during treatment.   It's pretty individualized to you can do what is good for you.  It's mainly cardio and resistance, not weight lifting. 

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    After looking at several places I finally made contact with the Livestrong program at the Y in Orlando. Here's the phone I called: 407-644-3606. It's 12 weeks of classes and you can use all the facilities and you can even bring a family member. I'm scheduled for intake on August 4. If anyone else is interested maybe we could meet there.

    Aurora

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  • lbrewer
    lbrewer Member Posts: 766
    edited July 2014

    which y did you go to?  I have been trying to get enough to make a class at the lake Nona y

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    Ibrewer, I'm going to go to the one in Winter Park, that's the closest to where I live. Another BCO member "HomeMom" is also interested but she's still getting chemo and might have to wait until the end of August. At that time we might organize a "get together" including another BCO member "Spookiemom" from the Tampa area in case you're interested.

    Aurora

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited July 2014

    The closest Y to me is the Roper YMCA in Winter Garden. I should get back to walking at the very least. I was up to 4 miles three to four times a week with a couple of my neighbors. 

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    I don;'t know if they have that program at the one in Winter Garden, I would suggest calling the number I posted earlier and see if they do.

    I was never an active person but I need to start somewhere so I am restarting physical therapy tomorrow and on the 1st I'll go to the Y. It's easier for me to do it in company of other people that have the same kind of struggles as I do. Here's hoping you find something that works for you while being easy on your chemo ridden body.

    Take care,

    Aurora

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  • lbrewer
    lbrewer Member Posts: 766
    edited July 2014

    I told the y at the lake Nona that the livestrong foundation doesn't even show the four orlando sites that offer it.  Hopefully they complained and the site will get updated.  I would love to do a get together. I am swamped at work through September unless it's on a weekend tho

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    Ok, I think sometime beginning of September would also be better for HomeMom, she told me she'll finish chemo the end of August, so we'll see.

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  • lbrewer
    lbrewer Member Posts: 766
    edited July 2014

    keep us posted!

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    Hello Orlando Ladies!

    I am downtown-ish!   MO at Florida Hospital.  RO at Orlando Health!

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    Hi jbokland Who is your MO at Florida Hospital? I am with them too but in Winter Park. Also take a look at the Get Togethers forum Orlando Babes thread. We are planning a get together sometime the beginning of september if it works out for everyone. Personally I would love to meet others and learn from their experiences "live". Another thing is the YMCA has a 12 week "free" program for cancer patients. I'm enrolling in the one at Winter Park because it's the closest to me. You can even bring a relative with you, Its run by Livestrong.org if you are interested you can call at 407 644 3606.The program is at 4 different Y locations in Orlando but I don't know where the other ones are. Call for more info.

    If there's anything I can help you with don't hesitate to pm me.

    Aurora

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited July 2014

    Yeah,,,, September will be better for me. Tomorrow is the first of four Taxol... hoping for mild SE's!!

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    HomeMom-  I cannot recommend icing enough!!!  It helped me greatly avoid SE.   If you need more info let me know.

    I would love to be included in an Orlando get  together!!   I go to the Florida Cancer Institute at FL Hospital.  Dr. Carlos Alamaney

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  • lbrewer
    lbrewer Member Posts: 766
    edited July 2014

    icing should work. I did cold caps at Florida hospital and didn't lose my hair. It's the same idea...restrict the blood flow somewhat and the chemo doesn't cause as extreme consequences 

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited July 2014

    The only problem for me is that I am in that chair for about 3 hours. Nothing will stay cold that long. I thought about bringing frozen water bottles to hold in my hands. I talk to the nurses and they said very few people do that and they do not see many issues with the people who don't. I wish I wasn't in the chair so long!

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    We brought a cooler with 4 snack bags and one gallon zip lock filled with crushed ice.  about 10 minutes before taxol I used the snack bags over my toes ( wearing socks) and under my heels. I secured them in place with knit slippers.  I put both Hands  in empty bags and plunged them in gallon bag.  Stay like that the entire infusion.

    Sorry, I sharply disagree with your nurse. I saw lots of black or lost nails with others. Also some hand and foot syndrome. Some of this occurs after last treatment so nurse may not be aware. 

    I started with hand and foot and it resolved as soon as I iced.  

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited July 2014

    Did you use the glutamine powder and B6 supplements? Those are supposed to help. It wouldn't hurt to try and see how long I can get out of icing. How long were you in the chair? I'm getting DD for 4 treatments.

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    total time during Taxol at least 3.5 hours.  Btw. I'm sitting in the Clermont Crispers !

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited July 2014

    YUM Crispers! I haven't been there in a while. I may just run out this morning to Belks, they are having a sale on handbags and I need to get my mother one for Christmas. Yeah, it's a little early, but she likes the colorful bags and they carry them. Plus the one I bought her 4 years ago is looking raggy. Can't believe how good I feel!

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    take advantage of it! If you ever get a chance to stop in the healthy hut next to Crispers; my good friend manages that store and was DX last month.  I just brought her my wig.  Stop and say hello'

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited July 2014

    Will do!

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