Charleston Bound, part 2

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  • WaveWhisperer
    WaveWhisperer Member Posts: 898
    edited June 2013

    Beth, I was among a group of women all going through chemo at the same time (december 2011 t/c), and many of us took the plain claritin to help with bone pain after our Neulasta shots. Even my MO had heard of women getting relief from it, altho she could not offer a scientific reason. I'm taking it again now to help with joint pain from Arimidex.



    Lbrewer, I'm with you on the need to spread the word about Lynch syndrome and the test. I was tested, and apparently there are two companies offeing it now. Mine cost about $4,000, I think, but was covered by insurance. It took about 7 vials of blood. I ended up testing negative, surprisingly, given the fact that I, my mother and 2 of her sisters had colon cancer. This set off alarm bells for the geneticist, who urged that I be tested, especially since I have a daughter.

  • lbrewer
    lbrewer Member Posts: 766
    edited June 2013

    No Dr. Kline doesn't so the test..A GENESIST (SP) does.   The reason it is so expensive is becasue of the patent rights.  The issue is actually in court hearing right now.

  • 5andcounting
    5andcounting Member Posts: 232
    edited June 2013

    Thanks Beth. Will try that:)

    My air went out too, 4000 later and with a new unit, feels better but still hurts in the old pocketbook:)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    In case anyone is curious about the particulars, Myriad (the patent holder for the BRCCA tests) has patents that expire in 2014 or 2015.



    A lawsuit was brought to attempt to invalidate the patents. The lowest level of Federal Court invalidated the patents, but the DC Circuit Court (which hears appeals from the lower court on patent matters) reversed (reinstated) the patents. So the matter was appealed to the US Supreme Court, which heard oral arguments on April 15 this year. The court will give its decision later this year. The big question for the court is whether genetic material can be patented. However, it is unclear how the decision will change things, or if it could change things before the patents expire.



    Once the patents do expire, they will no longer block other companies from using whatever was patented and expired but ... I just read that Myriad plans to keep its business model going by limiting access to its proprietary databases, etc. Not sure what that will mean for folks who just want an affordable test (sigh) ...

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited June 2013

    CRS, my a/c was a pretty quick thing for the technician to fix, I think - he only spent about 10 or 15 minutes in the attic. Probably earned his travel fee just in sweat from the attic. Turned out it was some switch that should be reading 5 but was at 2.1 - whatever that means!!! But he had a new switch, fixed it, and turned on the a/c and it's cool now.

    We have a home maintenance agreement and they fix stuff but a limit on $$ value they will fix. Was thinking it might be the $4,000 as well for new a/c but whew - not this time!



    I think there are a lot of drugs out there that are made for one thing especially but with time they have found that they work for others, but who would have figured Claritin for chemo bone pain???



    Deidre, thanks for the info!

  • 5andcounting
    5andcounting Member Posts: 232
    edited June 2013

    Just got rear ended. Luckily had shoulder belt behind me. Scared me. In ER getting checked. Anyone else have this happen?

  • cascader
    cascader Member Posts: 599
    edited June 2013

    So sorry. Scary. I am glad you had the shoulder belt behind you, I drive like that too. Let us know what they say, I am hoping and praying all is ok. Hugs to you!

  • 5andcounting
    5andcounting Member Posts: 232
    edited June 2013

    Thx Cascader. Home and safe and flaps are fine:). Thank God!!!

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited June 2013

    Oh, CRS so scary! Even hearing you were in ER was scary!!! And Amen to thanking God you are okay!!!!! Very thankful!



    Yikes! I use a foam pillow made for between your knees if you are a side sleeper (bought it for side sleeping which I haven't done lately and it kinda didn't work that well for that anyway- but have re-purposed it for using to protect the new girls! Works great.



    I cannot imagine how shook up you must be- big gentle hugs! And again glad you and the twins are safe!

  • ketch
    ketch Member Posts: 157
    edited June 2013

    Good news from my yearly scans. No signs of cancer. The full body bone scan showed some arthritis in my collar bones, but I've had shoulder problems for years. If I can make myself sleep on my back rather than my sides, then they would nto bother me much. After the cancer, arthritis is not a big deal!

    The LE is still giving me fits with a bad flare up last week. I look really bad, I'm so very swollen from my waist up. I'm in a compression camisole which is hot with the weather now. My pump should be coming in soon & still going to PT....

  • ketch
    ketch Member Posts: 157
    edited June 2013

    Good news from my yearly scans. No signs of cancer. The full body bone scan showed some arthritis in my collar bones, but I've had shoulder problems for years. If I can make myself sleep on my back rather than my sides, then they would nto bother me much. After the cancer, arthritis is not a big deal!

    The LE is still giving me fits with a bad flare up last week. I look really bad, I'm so very swollen from my waist up. I'm in a compression camisole which is hot with the weather now. My pump should be coming in soon & still going to PT....

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited June 2013

    CRS,

    Even a small accident is scary!  I'm so glad your flaps and all of you are okay!  I never had a pillow or instructions to put something between seatbelt and chest.  My husband had open heart last fall, and he came home with a heart shaped pillow he was told to put under shoulder seat belt to protect chest.

    Ketch,

    Big great news about your clean cancer screening!!!  I'm glad so happy for that, but still bummed for you about the damned LE!  I hope the compression pump gives you quick relief!  That's crazy how your insurance pays for a megabucks pump, but wouldn't pay for the Swell Spots. 

    Take care everyone!

  • ketch
    ketch Member Posts: 157
    edited June 2013

    Insurance is crazy. Mine would not pay all for an off-the-shelf sleeve ($80) that would fit, but they paid $500 for a custom-made one! A friend had the same thing happen (same Ins. co.). So, it's anyone's guess.

  • lbrewer
    lbrewer Member Posts: 766
    edited June 2013

    does the claratin help with the arimdex?  I took it with the neulasta as well.  Never thought of trying it after it was over.  I feel like an 84 year old woman.  And not the one that won the lottery!

  • WaveWhisperer
    WaveWhisperer Member Posts: 898
    edited June 2013

    LBrewer, like you, I feel like I'm 84. I do think the Claritin is helping some. I took a 4-week break from Arimidex because the joint stiffness was so bad and it's just been about 2 weeks back on it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    CRS -



    That's one of everyone's big fears - glad you're ok! I put the lap part of the belt on and keep the shoulder strap behind me - but I think I'm going to put my pillow back in the car.

  • Cherrie
    Cherrie Member Posts: 1,423
    edited June 2013

    I am leaving Friday for Michigan's Upper Penninsula . We will be with my son and DIL saying goodbye as they make their move to Seattle. Then taking a vacation in more remote areas. I may be without service for 7-10 days.



    I am thinking of all those going into surgery and recovering. We are in your pocket for sure. You are such strong women.



    "See" you all later!!

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited June 2013

    Cherrie, you are in ours as well- I know it's hard with your son moving. One of my sons, the one in PA is with me right now visiting my dad in FL. So good to spend this time with him.



    Hope your visit is a good one.



    Hugs



    Catie

  • cascader
    cascader Member Posts: 599
    edited June 2013

    Cherrie, have a wonderful time. I will be going "up north" in July. Seattle is a great city, they will love it and you get to visit. Is your remote vacay in Mich or Wash?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Cascader,



    Thanks for letting us know. You're a benchmark for me, for sure. Hope you have a great trip and that by you return you are "Tupperware-free..."



    Having a rough day at work today. Sometimes, the " off-limits period after my S-GAP seems like a better alternative (sigh)



    Deidre

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited June 2013

    Today is four weeks away before I'm on the OR table again! That means I'll be on the road again driving south in three weeks to have time to relax, go to beach, sunset bar with my old friend.



    Looking forward to meeting SewaneeGirl for lunch day before surgery! Catie, sure wish we could meet up before surgery when we aren't all doped up, bruised up, stitched up. :). So we all can hopefully meet up after and compare battle scars and do cheers with smoothies.



  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited June 2013

    Cherrie,



    Have a nice trip even though so hard to say goodbye to your children no matter what age.



    With my daughter just graduating from high school both she and my son will head off to college in August and I will be an empty nester. ...

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited June 2013

    Awww, Pink, will be fine after - I'm sure we will have a great time sharing our colorful battles scars!



  • lbrewer
    lbrewer Member Posts: 766
    edited June 2013

    Pink,

    Looks likes we will just miss each other.  I'll be thinking of you.

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited June 2013

    Lbrewer,



    I was holding on to an August 2 date but they needed it for a Stage 1 so i just stayed with July 10.



    What date will you be arriving in Charleston? I'm not even sure when I'm leaving after surgery.



    Are you bilateral SGAP?

  • lbrewer
    lbrewer Member Posts: 766
    edited June 2013

    unilateral.  I had DIEP on the other a few years ago but the BC reappeared in the opposite breast.  My surgery is jULY 31.  If you'd gone with Aug 2 we'd be there at the same time.  I think Dr. K has vacation in July

  • lbrewer
    lbrewer Member Posts: 766
    edited June 2013

    I wonder why they can't do like a ping pong ball sized implant when they do the flap and not have to do more fat grafting later?

  • cascader
    cascader Member Posts: 599
    edited June 2013

    haha, i could use a ping pong ball right at the tip for just a little more projection!

  • bdavis
    bdavis Member Posts: 6,201
    edited June 2013

    lbrewer.. they can do that... and some women have. But many women have jumped through hoops to avoid implants, so they find that option not as attractive.

  • lbrewer
    lbrewer Member Posts: 766
    edited June 2013

    I think I'll ask Dr. Kline about it!

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