Faslodex Girls

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  • scuttlers
    scuttlers Member Posts: 1,658
    edited November 2012

    Eva, go to Medicare.com, put in your zip code and it will show all the supplement policies that are available in your area. You can compare them there.

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  • Aerial
    Aerial Member Posts: 194
    edited November 2012

    Good bone scan news!  I got a call on Monday morning and was informed that there were no new lesions and in fact, there's been improvement!  My chest x-ray revealed "situation normal" for heart and lungs.   Whew, I am so relieved!

    My retirement health insurance has disappointed me on many levels. My leg pain (from entrapped nerve) is my most dibilitating symptom and I really don't feel like I'm getting the full story behind the denials for the radio frequencey ablation treatment.  GRRR...they are such weasels!

    Thanks to the grace of God and cheers to Faslodex!  Long may it kick cancers butt for all of us!  SmileLaughingSmile

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2012

    Aerial!

    Brilliant! What wonderful news!

    *susan*

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  • Tina2
    Tina2 Member Posts: 2,943
    edited November 2012

    Hear, hear, Aerial! Good news and a great toast!

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited November 2012

    Congrats Aerial!

    No private insurers will insure disabled for the 20% not covered by Medicare in my State. DE is a non guarantee issue State, meaning private insurers do not have to insure us so they either don't or they charge so much we cannot possibly afford it. 

    Medigap is guaranteed for those 65 and over, but not the rest of us. I'm hoping another Faslodex sister has found a creative solution if she also lives in a non-guarantee State. Thanks for all ideas. 

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  • SyrMom
    SyrMom Member Posts: 862
    edited November 2012

    I would advise to call your doctor's office - they can advise you what they accept and what plans are best for you.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2012

    Most doctors have NO idea what drugs are covered by any particular insurance plan. They only know what their practice accepts for doctor visits.

    *susan*

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  • SyrMom
    SyrMom Member Posts: 862
    edited November 2012

    To clarify, I would advise talking with the billing office at the facility you rec treatment.  They are familar with the plans (at least the one I go to is).

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  • Lemonsoda
    Lemonsoda Member Posts: 156
    edited November 2012

    Nanaskids, 13 years out is fantastic! Gives me hope. I notice that you are Her2+. Surely you are on Herceptin as well as Falsodex? Anne

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  • SyrMom
    SyrMom Member Posts: 862
    edited November 2012

    First bone scan since starting faslodex in July; 2 new areas.  I'm bummed, very discouraged.  Don't know what the plan will be going forward yet.Frown

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2012

    syr,

    So sorry to hear this. Had hoped for better news. Please let us know your new plan.

    *susan*

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  • Tina2
    Tina2 Member Posts: 2,943
    edited November 2012

    Rats, SyrMom. That is upsetting news, but please try not to be discouraged. As you know, there are many treatments available to us when Faslodex fails. Please keep us updated.

    Tina

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  • SyrMom
    SyrMom Member Posts: 862
    edited November 2012

    Thank you.  See ONC this week.  Wondering if he will advise to add Arimidex to mixture; will see. 

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited November 2012

    Syrmom: Please let us know your next plan. We all learn from one another. Hang in there, Eva

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  • SyrMom
    SyrMom Member Posts: 862
    edited November 2012

    Sure will.  Yes, we all learn from one another.  I think I've learned more from this site than anywhere.  I'm truly grateful.

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  • Tree3
    Tree3 Member Posts: 159
    edited November 2012

    Syr, although I'm new to this site, I've learned a lot from it too.  Praying that you will find a med that will help you.  I know how you feel.  This cancer stuff scares me to no end.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2012

    Tree???

    Are you back from your trip? If so, tell us about your helicopter ride, please.

    *susan*

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  • Tree3
    Tree3 Member Posts: 159
    edited November 2012

    I'm 72 years old, soon to be 73 and have been told that my age is against me.  I want to say FU to them but they may be right.  How do I know.

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  • Tree3
    Tree3 Member Posts: 159
    edited November 2012

    Yes, I'm back from a wonderful trip.  I have to admit I was nervous as heck because of compromised lungs but I ordered a wheelchair at all airports, and also ordered a scooter at the massive hotel in Las Vegas.  The helicopter trip over and through the Grand Canyon was beyond fantastic.  My son was with me and that made it all the more touching.  Imagine going from the lows of being told you have a cancer that may kill you soon, to flying high in one of the seven or eight wonders of the world, in three months.  Surreal.  But I did it and my lungs appear to be fine.  And, Susan, thanks for asking.

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  • SyrMom
    SyrMom Member Posts: 862
    edited November 2012

    Tree3, good for you! You are brave and I'm so glad you were able to enjoy your trip with no lung issues.  As for your age being against you, I, personally would disagree.  My thought is, once post menapausal sometimes the cancer can be less aggressive or slower growing.  However, that being said, metastatic is metastatic.  We all have our struggles & everyone is different & our overall general health is important, too.  If my ONC had made that statement to me, I would be looking for another ONC.  Hang in there!

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  • Tree3
    Tree3 Member Posts: 159
    edited November 2012

    Syrmom, that's how I understood cancer too.  The older you were the slower the growth.  But mine was diagnosed as fast growing.  Less aggressive?  Well, it is in my spine and lungs.  And when my stage 4 cancer was first diagnosed I had 2 and 1/2 liters of fluids in my lungs.  The fluids appear not to have returned.  And I guess that's a good sign.

    It was my Primary who commented about my age not my oncologist.  And what he said was, "well, you know, you are 72"  I just looked at him like he was crazy.  But I will say this.  I asked for, and my onc agreed, that I could have pt to build my strength back up but my Primary has to make the referral.  I'm seeing him tomorrow.  I  want to be able to take long walks and do some weight bearing without doing any more damage to spine and lungs. Or even without the fear of doing damage.  I do want to live for as long as I can live.  And living is different for each of us.  

    Good luck, Syr, with this meeting.  Please let us know.  We care.

    Teresa

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  • Tina2
    Tina2 Member Posts: 2,943
    edited November 2012

    Tree3, now hear this: 72 is the new 42!

    Spread the word, particularly to your crepe-hanging doctor.

    Tina

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  • Tree3
    Tree3 Member Posts: 159
    edited November 2012

    Tina, I burst out laughing when I read your comment.  It is so funny.   And I'm going to tell him that tomorrow. No 72 year old needs to be reminded that they're 72.  He's a fabulous Dr but a bit of a dope or should I say nerd.  Thanks for making my day.

    Tree

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2012

    Tree,

    Tina made me giggle too! My mother broke her leg this summer. A fracture that didn't require a cast, but she had to NOT walk for 10 weeks. She had to fight her doctors for PT. She had to fight them for OT. She had to fight them to get the best kind of brace. And fight them to get a walker instead of crutches. The entire staff at the hospital 'tsked-tsked' her for still working full time. They treated her like an alien.

    I found the most WONDERFUL physcial therapist at the Beth Israel- Chelsea. If you want her name, just PM me. With her guidance, I was able to reduce my back pain to almost zero. [This was a little Faslodex side effect I ignored for too long.]

    *susan*

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited November 2012

    I am currently not stage IV, but have had recurrence twice and new lumps that have to be biopsied - they are at the same site as the last recurrence, so it is still considered "local/regional" and not definite stage IV. So I apologize for posting here, but my MO has been suggesting I start faslodex in an effort to control this. I did chemo, BMX/ALND, tried tamoxifen twice but had severe problems with it. My question is this: How do the SEs of faslodex compare to tamoxifen? I had lots of pain, hot flashes every 20 minutes with near fainting, severe emotional problems. My MO has told me that faslodex is easier. How much easier???? I do not trust her judgment because she has consistently underestimated benefit (the chemo was supposed to work) and overestimated the harms (the chemo left me with permanent peripheral neuropathy and inability to do my profession). I know she is using "evidence-based" approach, and doing her best to "save my life" so I do trust her on that account - just not her judgment on how bad the SEs can be. I will check back here, but will respect the Stage IV only and won't post again. I would also be happy to have any info in a PM. Thanks much, and I am sending you all thoughts of lovingkindness, wishing you freedom from pain and fear.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2012

    Linda,

    Please don't apologize. Your are welcome here if you want to discuss Faslodex. I did chemo [back when I was Stage II], aromasin, and now Faslodex. Of the four drugs, this is the easiest for me. I am going into month no 37 - 40, I have lost track, and so far my side effects have been some back pain, injection site tenderness for 3 days every few months, thirst, and just a bit of hair thinning. Compared to tamoxifen, though I can't speak from personal experience, Faslodex is much easier for many women that I know.

    Please ask questions here. PM's don't spread the knowledge in ways that others, who might not post, can read.

    I have no fear, and I have no pain.  :-)

    *susan*

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2012

    Tina,

    Don't forget to start drinking water! :-) Hope your injections go well tomorrow.

    *susan*

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  • Tree3
    Tree3 Member Posts: 159
    edited November 2012

    Hi Susan, Tina , Syr and anyone else who's here.   I visited with my Primary today, the one who reminded me a few months ago that I was 72, and he was thrilled and, quite frankly,amazed at how well I looked.  I have been worried about my lungs as three months ago they had filled with fluids and the lung collapsed.  Today he listened to my lungs and said they were normal, maybe even better then normal.  I let out a yelp of joy and he had a smile on his face that could have broken a jar.Whatever.  I did remind him that 72 was the new 42 and all he did was grin.  He's probably 50.

    Well, he's quite happy that I was requesting PT and he said he'd research the right place for me.  He also mentioned that if I'd had a heart problem it would be easy to place me in a certain rehab therapy but because it was cancer, lung and spine he felt it important to do some research before he recommended a place for me.

    I will let you know the outcome and if necessary, Susan, I'll PM you about your PT.  Thanks for your support. I almost feel healthy.  Haha.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited November 2012

    Yay, Tree! You go, girl (emphasis on "girl")!

    Thank you, Susan. You are a much more effective reminder than a note in the calendar that I always forget to check.

    Linda, Faslodex has SEs, but they are different for everyone, and apparently much milder than those that can occur with other treatments. Check back through this thread and you'll see. I've never been on tamoxifen, so I can't compare the two.

    Tina

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  • Aerial
    Aerial Member Posts: 194
    edited November 2012

    Linda, you're welcome to post here anytime! 

    Tamoxifen was the first AI i was given and it did not sit well with me.  I had mood swings, crying spells, hot flashes and dizziness.  Then, the final straw was vision problems.  There were several times my vision felt blocked by grey blobs.  I just couldn't function in my job with these side effects so they switched me to Arimidex.  My Faslodex symptoms are much less--just some injection site pain for a few days.

    Thanks for your positive thoughts and I'm sending you hugs and prayers. 

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