Orlando, (and other nearby Florida cities) get together

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  • auroaya200882
    auroaya200882 Member Posts: 942
    edited February 2016

    Hello Jessika and all others. I'm doing well thank God I just got my results from my bone scan and things are looking pretty good I'm responding well to treatment and the doctor is going to study my chart to determine to stop the chemo and switch to an anti hormones medicine. Hope you're all doing well.


    Au

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2016

    woo-hoo!! Great new, Au!!

  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited February 2016

    Hi all! We need to congratulate Aurora on her numbers from chemo showing progress and she can stop, I think. Aurora, correct me if this is wrong, but I think I read this on another thread. I do know it was good news. :)

  • auroaya200882
    auroaya200882 Member Posts: 942
    edited February 2016

    Yes mysunshine you are right! My bone scan shows improvement when compared to the previous one and my doctor is looking into the possibility of switching me to a less aggressive form of treatment, so I'm grateful and thank you all for your support.


    Aurora


  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited February 2016

    Happy Dance for you, Aurora!

  • jbokland
    jbokland Member Posts: 890
    edited February 2016

    very happy to hear the good need Aurora!!!

    I am working with my doc to find me a better drug. The Tamoxifen is making me feel like I'm 80. I get to stop it for two weeks..,I feel better after just 3 days!💐

    We are just getting home from seeing Kinky Boots..wonderful play!!

  • Jesika63
    Jesika63 Member Posts: 78
    edited February 2016

    Good to hear auroaya. I love to hear good news. yay

    Jbok- These estrogen suckers really suck the life out of us. I hope you can find one with the least side effects. Enjoy the to weeks you off.

    Hugs to all.

  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited February 2016


    Yep, I agree, estrogen blockers do more than just block estrogen. I have had some hip joint issues lately, however, if it does the job of keeping csncer cells (if there are any) away, I will trudge on and be thankful there are drugs to keep me Cancer free. So, girls, just keep swimming!

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    HI Everyone

    That's FANTASTIC news Au!!! Big hugs! Love what you did with the bling bling pink ribbon. I gave one to my sis for the back of her phone (where I have mine)

    Hope you do better on an alternative Jeanette. It's great that we even have a pill to keep this crap from coming back.

  • aviva5675
    aviva5675 Member Posts: 1,353
    edited March 2016

    House is on the market and we will be moving to Homosassa in the next 3 months-- I'll throw my name in here for Florida ladies! Goodbye Illinois winters

  • jbokland
    jbokland Member Posts: 890
    edited March 2016

    After 2.5 weeks off of Tamoxifen, I feel like a new woman! But, I am starting on Anastrozole tomorrow. I hope I don't have the same side effect of muscle pain and weakness....I'll trade those for the treat of a dry vagina! (lol)

    Hope all is well with you lovely ladies! Welcome to Florida Aviva! I love Homosassa!

  • auroaya200882
    auroaya200882 Member Posts: 942
    edited March 2016

    Hi Jeanette and welcome Aviva . Jeanette I was taking Anastrozole for 2 years and the only se's I had were sore joints when getting up from sitting down a long time and I was able to shake off the soreness after walking a little bit. Also had hot flashes but those were controlled by my antidepressant (Cymbalta) which I was taking before bc anyway. Hope it's effective for you with little or no se's.


    Aurora


  • aviva5675
    aviva5675 Member Posts: 1,353
    edited March 2016

    Ive also been on anastrazole my whole time (2 1/2 years) and have had basically foot joint pain that goes away right away, some hot flashes. Ive been on gabapentin and melatonin for the flashes and its getting slowly better. I even have been able to lose some weight in the last few months. But over all its been a good med for me.

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    Welcome Aviva! Question, melatonin can help with hot flashes???

  • aviva5675
    aviva5675 Member Posts: 1,353
    edited March 2016

    the gabapentin does. The melatonin helps me sleep, which helps me sleep thru some hot flashes I might otherwise wake up from. My nightly cocktail is melatonin, gabapentin and a shot of Zquil. Only things Ive found in combination to work well for me. I have noticed in last 3 months or so my flashes getting slightly better also. I think I've settled finally into the anastrazole and leveling out.

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    Aviva - thanks for clarifying that. I take melatonin too, and I really like Zquil. I don't usually take them together though. Melatonin doesn't seem to keep me asleep all night, but I do go back to sleep if I wake up. I'm leaving for Paris a week from tomorrow and I think I will take Zquil on the plane to sleep. :)


    On another note, I was talking to someone I just met last night. She was diagnosed several months ago and didn't have chemo or radiation. She did have a double mastectomy though. I thought...hmmm no rads?? Then she dropped the bomb. She also had two nodes positive! I didn't want to question her doctors, especially since she has been through a very bad time the past 10 months, but my doc said I would have rads only if it wasn't in my nodes, if in the nodes I get chemo and rads. I'm afraid she didn't get enough treatment!

    She is the mom of my son's ex girlfriend who was killed by a hit and run drunk driver in Tampa last May. I just met her face to face last night because we had small party for what would have been her daughter's 21st birthday. :( I hope the treatment she got was enough...scarey stuff right there.

  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    Wow, homemom,, that is sad for her to lose her daughter so young. And it does seem strange that with 2 positive nodes that she wouldn't have either chemo or rads,,, but to have neither,,, It does seem strange.

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    glennie, it was such a shock and so very sad. She was moving back to Orlando to continue college at UCF. My son was trying to make amends since he was the one to break off the relationship. She lived with us for about 5 months before she moved to Clearwater, so I got close to her. They dated for over a year and through tears last night he said he loved her and would have married her. He was doing really well, I'm a little afraid he may have taken a step back last night. He is seeing a therapist now and it's been good for him.

    I am a little concerned for her mom that she might not be getting enough treatment and it may come back to haunt her. She just went on how she was spared more agony and stress by not having to go through chemo etc. Sigh.


  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    HomeMom, I'm glad your son is seeing a therapist. He definitely needs someone to talk to about this. Any death is hard,, but sudden death of a young person really hits you in the core. And I can understand why you are concerned about her mom. Hoping it doesn't come back to haunt her either. Wonder why her MO didn't think she needed rads or chemo.

  • jbokland
    jbokland Member Posts: 890
    edited March 2016

    Well that's just concerning, and does not make sense. Do you feel like she is giving you accurate info?

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    Thank you Glennie....yeah he seemed to be a magnet for crapola the last two years. Had to have surgery on his shoulder and we have to now get him checked for kidney stones. One day at the Publix he was approached by a 40 something year old guy who asked him if he wanted to make some extra money. He was like "Sure, whatcha got?" The guy said to drop his pants and show him what HE had. My son is 5'11" 160lbs. He just reacted and cold cocked the guy knocking him to ground and out! He drove out of there yelling to the people who saw it that the guy was a pedophile. They he called the police to let them know about it. Poor kid, I swear!


    Jeanette, I have no reason to think she was confused. I was telling her about how I have to be careful of lymphadema when I fly to France next week, and she said they took 12 nodes out her and two were positive. Next time I will ask more questions, like what was their protocol for deciding on administering chemo. I just don't get it. I didn't want to push the subject.

  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    holy smokes! Poor DS!! What a crazy thing to happen to him.

  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited March 2016


    Homemom, I think you should try and get more information and talk to the woman with 2 positive nodes. It might save her life. Maybe it seems a little forward, but very important. Suggest she get a second and third opinion. I have never heard of anyone not having chemo and/or radiation with 2 positive nodes. Ask if she had an Octotype or Mammaprint test. Sounds like she needs a new doctor!!!! See what you can do. We owe it to each other to be each other's advocate!

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    I agree sunshine - Now that she knows me face to face she is open to getting together again. I'll find out more information. I just assumed she had DCIS or something, but no rads even with that is crazy.

    I leave for Paris Thursday, so I'll see you all when I get back!

  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    Have fun in Paris!!

  • auroaya200882
    auroaya200882 Member Posts: 942
    edited March 2016

    Wow Paris! Hom mom have a wonderful time and we expect to see some awesome pictures of yourself and family/friends in great places! Have a great safe trip!


    Aurora



  • jbokland
    jbokland Member Posts: 890
    edited March 2016

    I have never been to Paris but I absolutely have that on my bucket list.

    We just booked a trip to Scotland in June

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    Well after the attacks this morning in Brussells my mother blew up my phone. I know she doesn't want me to go so I didn't answer and have not called her back. I'm pretty scared now to go. My common sense tells me nothing will happen, but my fear is real! What do you guys think?? I'm less then 48 hours from boarding my plane!!

  • auroaya200882
    auroaya200882 Member Posts: 942
    edited March 2016

    I would go. It's unlikely that there be more attacks following these. I understand your fear because there's an actual risk but I trust God would keep you safe. Do you have travel insurance? Would you loose your money? I don't know but I still lean toward the go! Side

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    I think Delta is offering to change your travel dates with no fee, but my sister n law is still planing on going so it wouldn't make much sense to change dates - plus if I'm afraid now, I don't think another month will matter much.

    I need to call my sister n law and talk to her. Maybe she can calm my fears.


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