The Leukemia & Lymphoma Society - Fighting Blood Cancers
34 Replies Latest reply: Mar 12, 2012 6:22 PM by JamiePires RSS

CML in Tampa Bay

JamiePires Registered Users
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Hello,

I am a fellow CMLer, diagnosed in 2001 and have been on Gleevec since 5/01 - CMR for years now.  I am looking for others in the Tampa Bay area to talk to about their tx and results, and future tx plans.  Please let me know if you would like to meet with or just talk to a local fellow patient, thanks!

 

Jamie

  • Re: CML in Tampa Bay
    pammartin Registered Users
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    Hi Jamie,

    Oh how I wish I was in Tampa Bay, alas Pennsylvania.  Best of luck in your search.

    Pam

    • Re: CML in Tampa Bay
      billronm@roadrunner.com Registered Users
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      Pammie,

        Pretend you're in a virtual Tampa Bay. Well the stingrays are mating and the dolphins are hungry. Ron is obsessed with shelling and when the tide goes out he goes out with it. Yesterday the tide was way out so he walked clear out to the buoy. He didn't know there was a huge drop off right past the buoy he heard this noise and 2 dolphins jumped up about 15 feet away from him and were grabbing fish. He won't admit it but I bet he hightailed it into shore. But those sting rays swim right close to shore. He says they won't bother you unless you step on their tail. How the hell do I find the tail on a big stingray.

        Ron's sister know's the people who live in the lighthouse and they are going to be moving out. So there will be an opening there,Ron's a viet-nam vet and he retired from the Pa. fish and boat commision which is a government job. He probably would have a good chance of getting the job if he applyed for it,and he used to do construction work. Can you imagine living in a lighthouse on Sanibel? That would be so cool. And there would be plenty of room for our family and friends to visit. 10 years ago we would have jumped at the chance. Oh well I guess it just wasn't ment to be.

        Oh well! Did I tell you I tackled a beagle?  I know I sent you an e-mail but I finally found my wine so I was sipping and typing and I can't remember what I wrote.

      Take care and Hi to all my friends out there I'm getting back in the saddle again.   lol Billie

  • Re: CML in Tampa Bay
    pamsouth Registered Users
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    Sorry Jamie I live in Indiana and have been on Gleevec since 2005.  Glad or hope it is still working for you.  I know a lot of doctors are pushing the newer drugs as Gleevec patent will expire in 2015 and it will become Generic costing maybe $5.00 to $10.00 a pill.

     

    Pamsou

  • Re: CML in Tampa Bay
    lrock Registered Users
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    Looks like I'm closest to you so far - in SC.  Just dx a week or so ago, 1/20/12.  Started Tasigna yesterday. 

  • Re: CML in Tampa Bay
    pamsouth Registered Users
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    I travel to Florida a lot.  My husband wasn’t able to go last years, so a friend went with me.  We stayed at Indiana Rock for a week in the Clear Water Area.  However we did a lot of sight seeing all the way down to Sarasota.  Then 1 stayed a week in Orlando.

     

    My husband and I used to have a home right outside of Orlando in Davenport about 8 miles west of Animal Kingdom.  Take a left where 192 end and go about a mile and the home is on the right.

     

    We sold the home after we inherited momma, She is a hoosier and wouldn’t move to Florida even though it was close to her sister and to my sister.

     

    We always thought we would move back.  But then the house prices sky rocketed, but then came the storms.  Now I am 64 and my husband is 70 years.  So I just dream of moving back.  Maybe just maybe next winter we could be live in Florida Jan - Mary, that would be cool.

     

    PamSouth

  • Re: CML in Tampa Bay
    markmendonca Registered Users
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    hi i am from boston Mass but i spend alot of time in port stain lucie fl and i will be there agine in feb 8th for a month .  i would love to talk on the phone and maybe we could met up. thanks it is so hard to get someone to talk on the phone thanks

  • Re: CML in Tampa Bay
    Stevea Registered Users
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    Hi Jamie,

     

    I live in Clearwater.  I was diagnosed in 2002 at age 19.  I go to Moffitt still, every 6 months.  I take Gleevec 400mgs.

     

    -Steve

    • Re: CML in Tampa Bay
      pamsouth Registered Users
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      Steve,  I have a brother-in-law, 75 years old (my sister). He lives in Kississimee Florida,  He goes to Motfitt about ever 3 months since 2006.   In 2006 he was diagnosed with osteo sarcoma, actually a child’s cancer, but aggressive, as I understand it.  He came back to Indiana, so his daughter could help take care of him thru Chemo and also they cut his knee off and several inches of muscles.   I should say they replaced the knee.  He did have two surgeries on the lungs and radiation on the other lung.  He spent 20 years in the Air Force and 20 years working at the Marion In VA.  He was very active mainly in Tennis, but running, walking, golf.  He always ate healthy.  Younger days they ate a lot of grilled steak.  However in the old days cattle and chicken were free roaming and we didn’t put them in little cages and shoot them up with antibiotics and hormones to make them grow faster, and all the preservative they add.  He, Jerry, is still very active, still plays tennis and all, but a bit slower.  He does go to the Moffitt every 3 month.  He does take a lot of vitamins and herbs and gave up eating meat.

       

      I was wondering If my husband and I ever moved back to Florida about living in the clear water area to be close to the moffitt.  However Jerry has said they special in certain cancer and I didn’t know if Leukemia was one of them.

       

       

       

      PamSouth

      • Re: CML in Tampa Bay
        Stevea Registered Users
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        PamSouth,  Sorry to hear about Jerry but glad to see he is still active and getting out.  It takes me about 30-40 minutes to get to Moffitt from my house which isn't bad and Clearwater is a very nice area especially all the beaches around.  I do not think I would ever move from this area.   As for Moffitt, I do not know if they specialize in Leukemia but I know a few people that go there and we go because of Leukemia.  The doctors are great and the hospital is really top notch if you ask me.  If you have any more questions let me know.

         

        -Steve

        • Re: CML in Tampa Bay
          pamsouth Registered Users
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          Stevea,

           

          I think I already mentioned in an earlier post that last year that me and a friend went to Clear Water for a 1 week and drove down to Sarasota.  That was the last week of May and it was a early heat wave last year.  However I was wonder what the weather temperature is in the clear water/tampa area in the winter.

           

          My husband graduated from St Pete Jr College back in, 1961, I think.  He said that he could drive his 57 chevy up and down the beach wasn’t a lot of resorts back then.  He has a video of him him at the beach, kinda funny to watch.  He said not many had a car back then, so all the girls would wanted him to take them to the beach.  Well in the video, all these girls keep getting out of that 57 chevy, he was the only guy. Oh yea and a video of the girls burying him in the sand and having fun with him.  Must have been kind of ruff being the only guy in that car with all those girls, they must have been sitting on each others lab.

           

          PamSouth

          • Re: CML in Tampa Bay
            Stevea Registered Users
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            PamSouth,

             

            It's really beautiful here year round, the temps in the winter get as low as 40s or so but it's usually only for a day or so.  This has been the hottest winter I think I have ever been here and I've lived here since 91.  I think since October it's really only gotten below 50 maybe 3 days or so, and I would say we are averaging about 70.  Today I hear it should be around 80.  But this year is unusually warm.  Clearwater beach is completely redone even from a few years ago, they are really trying to make it nice down there and they have for the most part.

             

            Steve

  • Re: CML in Tampa Bay
    tinac21 Registered Users
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    I am in the Brandon, fla area and have been a Cml'er since 2004. I attend moffitt about every 6 months now. So nice to see others in the area. We should have a tampa bay Cml'er party

     

    Tina

    • Re: CML in Tampa Bay
      Stevea Registered Users
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      Tina,

       

      Who is your doctor at Moffitt?  I was seeing Dr. Saba but he retired recently.  I have a new doctor who's last name starts with a "P" but I don't remember it, I haven't actually met him yet.

       

      -Steve

      • Re: CML in Tampa Bay
        tinac21 Registered Users
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        Steve,

        My doctor is Extermann in the senior adult onc clinic on the first floor. I think Dr Saba was also in the same clinic area. Its a smaller world at moffitt then I realized I cant say I have ever met anyone with Cml under 60 (no offence to the older members). So nice to meet you welcome to the "club"

        • Re: CML in Tampa Bay
          Stevea Registered Users
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          Thanks, been part of the club now for almost 10 years (April).  There are definitely people with CML under 60 but most of the time when I go to moffitt, i'm usually the youngest in that particular waiting room.

          • Re: CML in Tampa Bay
            tinac21 Registered Users
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            You've got me beat by only 2 years, I am going on 8yrs march 1st (happy cancerversary to me). Honestly, I haven't met anyone (young or old) with Cml other then myself and thew this form. I have been to a few meetings at the Ymca, but no one had Cml, mostly breast or other cancers. Maybe we might bump into each other next visit Happy Cancerversary in April

        • Re: CML in Tampa Bay
          pamsouth Registered Users
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          We are hoping to start looking next fall in the Tampa Area,  I think I wrote in an earlier post that we are from Indianapolis Indiana, but we have traveled many years to Florida and had a home for awhile in Davenport just 8 miles due west of Animal Kingdom it is called the 4 corners (because it is on 4 county lines).

           

          I have been on Gleevec since 2005 and am 64 years old.  Yes if I am still doing good, next year I would like to live the last of my years my the beautiful beach and sunset.  We have Crypt back here and I guess we could just fly our bodies back home, I think that is how it is done.  We so........ love the beaches!!!

           

          When we move I can find out all about the CML doctor at Moffitt from you guys.

           

          I also mentioned my brother-in-law, Jerry has been going to Moffitt since 2006, with osteo sarcoma, a childhood cancer.  He was 69 years old.  A retired airforce vet who took excellent care of himself.  He came back to Indiana when diagnosed for his daughter to help with him after they replaced the whole knee and cut off several inched of the muscles.  My sister is not well her self and is not able to help much, in fact he pretty much takes care of her.  He went right back to playing tennis, golf, and the ocean.  However it came back twice and he had to surgery on 1 lung and some radiation on the other.  He opted not to take anymore chemo, as when he was diagnosed the doc said they gave him the most chemo you could give any man as he was in good shape except for cancer.  Anyhow chemo would only offer him a chance of 10% of not coming back.  So the option of more chemo giving him less quality of life and only 10% chance, well he just said I go home, take my herbs and enjoy life.

  • Re: CML in Tampa Bay
    JamiePires Registered Users
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    Hey everyone,  

    Novartis is hosting a CML Summit in Orlando, FL on 3/24/12 - it is in partnership with the NCMLS - let me know if you would like to have more information about this meeting.  There will be an expert in the field of CML Treatment and several other presenters.  No cost to register, let me know

    • Re: CML in Tampa Bay
      tinac21 Registered Users
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      Wish that were in tampa, hate driving threw orlando on a Saturday.

      • Re: CML in Tampa Bay
        JamiePires Registered Users
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        I know what you mean Tina, but I truly hope you can come, it's a fantastic opportunity to learn from experts about CML and our treatment, and to meet others who have experienced it.  I will brave the traffic, hope to see you there!!

    • Re: CML in Tampa Bay
      Headi Registered Users
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      Hi Jamie, I'm in Bradenton. Dx w/cml in 2009.  Started with Glevec, on Sprycl now and dr. talking about going to Tasigna in April. I would be very interested in the cml summit in Orlando and any info you might have. Definitely interested in talking with you and other cmlers. I don't get much info from my dr.& kind of depend on the experiences of others fighting the same battle.

    • Re: CML in Tampa Bay
      pammartin Registered Users
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      Don't know if I could pull it off or not, but would love to attend.  Could you provide more details about the summit?  Thanks

      Pam

    • Re: CML in Tampa Bay
      Stevea Registered Users
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      Jamie, I would like more info on this also.

      • Re: CML in Tampa Bay
        JamiePires Registered Users
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        I hope you saw the link I posted for the CML Summit meeting in Orlando Stevea - it's a fantastic opportunity to learn about CML and our treatment from experts, but also to meet others in real time, and talk about our experiences.  I truly hope to meet you there!

        Jamie

  • Re: CML in Tampa Bay
    JamiePires Registered Users
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    https://www.seeuthere.com/rsvp/invitation/inforegistration.asp?id=m2c6ee-46VZ9V8PWZF54&sutEventRoleID=m2c6ee-4BX56QMG4B4IS&sutGuid=40980&sutGuid=40980

     

    This meeting is free to all patients and caregivers, and extremely informative.  This link shows you who is presenting, and also how to register.  It is WELL worth your time.  I will be there and would LOVE to meet you!!

    • Re: CML in Tampa Bay
      Headi Registered Users
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      Hi Jamie,  Thanks for the schedule for the cml meeting in Orlando. I have already registered and plan to be there if hubby can get the time. Look forward to meeting you : )

      • Re: CML in Tampa Bay
        pammartin Registered Users
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        I would love to be there also, not sure if I can rearrange my family and our lives to attend, but I am really going to try.  Thanks for the info.

        • Re: CML in Tampa Bay
          JamiePires Registered Users
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          I hope you do Pam, it's 4 hours and you will learn so much about this disease, our treatments, and the best part is talking to others with CML - I truly hope to meet you there!

      • Re: CML in Tampa Bay
        JamiePires Registered Users
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        That's GREAT!!!!  I look forward to meeting you!!!  So glad you are able to come!

  • Re: CML in Tampa Bay
    JamiePires Registered Users
    Currently Being Moderated

    Orlando, Florida - March 24, 2012

    Santa Clara, California - April 28, 2012

    Broomfield, Colorado - May 5, 2012

    Newton, Mass. - May 19,2012
    Dallas, Texas - June 9, 2012
    Portland, Oregon - July 14, 2012

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