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~* The Waiting Room *~

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Comments

  • sherry35
    sherry35 Member Posts: 155
    edited July 2009

    Bette,

    So sorry to hear that your news is not good.  You are in my prayers. Keep the faith and trust that your drs will do everything that they can to get you where you need to be.  Please keep us posted.  ((((((((((HUGS)))))))))))

  • OG56
    OG56 Member Posts: 377
    edited July 2009

    Bette, 

    That is not the answer you wanted or that we wanted for you, but your faith will keep you strong so you can fight like a girl! 

    Hugs and Love

  • bettelou68
    bettelou68 Member Posts: 151
    edited July 2009

    Well, I am still waiting, this time on what my Tx options are. I will keep on checking in and praying for all of you, trusting God both for good news, or the grace and strength to handle bad news.

    Bette 

  • OG56
    OG56 Member Posts: 377
    edited July 2009
    Keep coming back to the waiting room so we can know what those options will be. I am waiting for a second opinion and maybe a third on if I should have a bilateral mastectomy to prevent another invasive cancer. This creepy cancer just needs to leave us the heck alone! Gentle Hugs to you Bette, I wish I could give you a real one Innocent
  • kjbell
    kjbell Member Posts: 454
    edited July 2009

    Oh Bette-I am so sorry to hear your news. You always stay so positive. I don't know how you do it. I will pray that everything goes smooth for you.

    Karen

  • bettelou68
    bettelou68 Member Posts: 151
    edited July 2009

    Karen, I stay positive because my hope and happiness are not rooted in what happens in my life, but in my God. He gives me strength and surrounds me with His love and comforts me  in trouble

    Bette 

  • Tonda
    Tonda Member Posts: 12
    edited July 2009

    Bette,

    This is a fight worth fighting, keep your faith and your spirits and you will be fine.  You know they say God will not give you more than you can handle and I am a firm believer in that.

    Still waiting for my results, they say sometime today they should know but whatever it is, this too shall pass.

  • bettelou68
    bettelou68 Member Posts: 151
    edited July 2009
    The onc at Hopkins gave us a lot of hope, and told me to go home and live my life and not stress out about this too much.

    Treatment is not set right now. Possibilities include a trial with PARP inhibitors, Xeloda or Carboplatin. Anyone know anything about these?

    Also, my cancer profile has changed. My estrogen receptor is so weak, that he said I am practically triple negative and would not benefit from hormonal therapy.

    I have to have a bone scan to check out some pesky achy ribs on my cancer side.

    That is all for tonight.

    Bette 
  • Tonda
    Tonda Member Posts: 12
    edited July 2009
    I finally heard from my onc tonight, he said there were at least two "hot spots".  One on my chest wall and one on the lining of my lung.  I asked him if it was cancer again, he said "I am not saying it is, I am not saying it isn't" he want's to do biopsy's next week but he says will take 2 weeks for those results Frown  Anyone else had this experience, I just want to know what I am fighting, I will fight like heck but if you don't know what you are fighting you are behind the 8 ball to begin with.
  • OG56
    OG56 Member Posts: 377
    edited July 2009

    I am with you Tonda, I need to know what I am up against. I felt so much better once I knew my test results all the nausea from fear left immediately. Although I am afraid at times and I don't know how this will all turn out I will put up my dukes and fight like a girl. I"ll  keep the coffee fresh and the magazines updated here in our little "waiting room"

  • Tonda
    Tonda Member Posts: 12
    edited July 2009
    Went and got my Path results so I could read what they said, I have no idea what any of this means (this was my first PET) but it says I have an area with a S U V value of 8.6 and another that says S U V value of 13.2.  I can't really find anything on the net about what the values should be or what is considered high.  I hate the waiting game, they still haven't scheduled my biopsy yet Cry
  • bettelou68
    bettelou68 Member Posts: 151
    edited July 2009

    Tonda, I know what you mean about the waiting for a biopsy, as I have just gone through that myself.

    Th SUV value is a measure of how much glucose the area takes up. Abnormal cells use more glucose, and so they take up more of the radioactive glucose you get injected with before the PET scan and show up as "hot spots" on the scan.  An SUV can be between 0-20. Anything above 2.5 could be cancer. Hope this helps.

    Bette 

  • Monty
    Monty Member Posts: 146
    edited July 2009

    Bette - I have been watching this post and I'm constantly amazed by how strong everyone is whether the news is good or bad.  I't's great to know the support and encouragement is always there.  I haven't has a recurrence yet but I realize there is always a chance it's going to come back and who knows where.

    God bless you all

    Gaynor

  • jezzy234
    jezzy234 Member Posts: 127
    edited July 2009

    Yes, we need a huge pot of coffee, a nice piano player and a beautiful waiting room.  Hey, what would the colors be in this room?????

  • lexislove
    lexislove Member Posts: 277
    edited July 2009
    Yes! I think our room needs to be designed. How about a soothing color? Something Spa like. AND...someone offering free foot massage with pedicure.Cool
  • bettelou68
    bettelou68 Member Posts: 151
    edited July 2009

    I received a phone call from the onc at Hopkins today. He has contacted the PARP clinical trial coordinator on my behalf. So am waiting for both my bone scan and a call from the trial.

    I would prefer soothing colors of blue and green in our room. I am giving myself a pedicure this afternoon. A relaxing way to wait!

    Bette 

  • OG56
    OG56 Member Posts: 377
    edited July 2009

    I too would like a spa green or blue, with chaise lounges and someone who gives foot massages (that is my favorite, and how I spoil myself) I think we should have really fluffy robes and slippers  and after the massages someone will lead us in healing meditations.........ahhhh I feel so much better just thinking about it.

  • bettelou68
    bettelou68 Member Posts: 151
    edited August 2009

    My DH Tom gives great foot massages! Maybe we can recruit him LOL.

    Bette 

  • sherry35
    sherry35 Member Posts: 155
    edited August 2009

    with some windchimes and the sound of the water lapping the shore and a soft breeze blowing

  • lexislove
    lexislove Member Posts: 277
    edited August 2009

    BetteLou..

    PARP trial would be excellent!!! I'm glad things are moving along for you.

  • bettelou68
    bettelou68 Member Posts: 151
    edited August 2009

    It sounds good, lexislove. We have to see if I get in. And that means MORE WAITING

    Bring on the foot massages! 

    Bette 

  • jezzy234
    jezzy234 Member Posts: 127
    edited August 2009

    Oh yeayeah!!  The foot massage.  I am setting up my appt tomorrow!

  • Tonda
    Tonda Member Posts: 12
    edited August 2009
    Foot massage sounds awesome, I am in Smile  Finally got a date for my biopsy, Tuesday morning at 7am.  At least I don't have to go without food or drink all day. 
  • jezzy234
    jezzy234 Member Posts: 127
    edited August 2009

    Will be thinking of you Tonda........

  • bettelou68
    bettelou68 Member Posts: 151
    edited August 2009

    Will be thinking of you tomorrow morning, Tonda. I will be at the hospital for 7:45 AM for my bone scan injection.

    Today we got a phone call scheduling my PARP inhibitor trial appointment for this Thursday. It is in Fairfax Virginia. Have to investigate this more thoroughly before we go.

    Bette 

  • OG56
    OG56 Member Posts: 377
    edited August 2009

    Many good vibes coming your way Tonda and Bettelou, If your good girls during your testing maybe you will get a Spa Day LOL   When I was through with my 2nd MRI biopsy I told the nurse and tech I wanted my candy for being such a good girl and they ran and brought me back candy!

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited August 2009

    Dear Tonda and Bettelou!!! Prayers are coming your way, both of you!!!! You are both amazing with your positive attitudes and faith. God bless you both, Kathy

  • bettelou68
    bettelou68 Member Posts: 151
    edited August 2009

    Bone scan over. Waiting for results tomorrow PM.

    Have decided to bring my knitting to the waiting room. Just start a baby blanket for someone in church who is adopting.

    Tonda, how did your biopsy go?

    Bette 

  • Tonda
    Tonda Member Posts: 12
    edited August 2009

    Bette, good luck on those results. 

    My biopsy went fine, they had a little trouble getting me numb enough and I felt some of it but it was no big deal.  The weird part was both the CAT scan and PET scan showed the masses on the left side and they biopsy'd the right side toward the middle of my back, they said they couldn't go in through the front because of the implants but I asked them why they were doing the right side and they said that was where they saw the mass on the new CAT scan they took today.  I called my onc and they told me not to worry about it.  Should get results by Friday or Monday.

    Thanks for the prayers Jess, Linda and Kathy.  Hugs to everyone.

  • OG56
    OG56 Member Posts: 377
    edited August 2009

    Tonda and Betty I think the waiting room is going to need a total renovation by the time we all get out of here. I am not waiting for anymore tests at the moment but waiting to meet Dr's about BMX.

    Tonda I have been meaning to tell you that I worked for along time with a woman named Tonda, you are only the 2nd Tonda I have ever metSmile

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