On to something else

BonnieR
BonnieR Member Posts: 1,526 Member
edited March 2014 in Ovarian Cancer #1
God's morning to all! I haven't posted for a bit and thought I should maybe update you all. Although I have posted replies to others ☺

I know a few of you read my caringbridge page so you already know my doc is working on getting a different drug approved. With medicare as primary it is more difficult to get treatments because ovarian cancer isn't listed on most drugs. Oh to have private insurance as primary again ~ life was so much simpler.

Anyway for 3 or maybe 4 months my ca125 has been climbing and is now in the triple digits. My oncologist said, because my ca125 went up again and was now in the triple digits, it was time to try something else. Of course I asked about increasing the dosage of what I am on :-) as I feel pretty good on it, but no go and was told this is the end of this one helping.

So we are again waiting for compassionate use for the next drug. For some triple digits isn't anything for me it is lot, remember I am the person that has a ca125 of 6 and lots of tumors on the ctscan.

Anyway just wanted to let you all know where we are at in this journey. If you care to read the post on caringbridge here is the link http://www.caringbridge.org/visit/brlemke

The post was a little longer and I shared a little more. :-) Hugs ♥ Prayers Bonnie

PS Anyone heard from Michaela Marie lately? MM if you are reading this please post an update.

Romans 8:25-27 But if we hope for what we do not yet have, we wait for it patiently. In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will

Comments

  • rasunshine
    rasunshine Member Posts: 28 Member
    #2
    A beautiful day to you
    I like your bible passage. I find comfort in visiting the Adoration Chapel at my Church. You do not need to be of Catholic faith to visit one or to attend a Healing Mass. It is a Beautiful experience. Ask God what he wants of you, then thank him for His healing light.
    On another subject, have you ever had an Immune Reactor Test? I feel everyone who visits this site should invest in one. It is amazing what we eat and drink and put on our bodies that is tearing our immune system down. It can be a whole new world for you, but worth a try. Everyone knows that Chemo is a quick fix, It ceases to amaze me that the medical profession is not investigating the why and what, but only new drugs. Not to knock them, we need that quick fix, but we also need to help ourselves to find the answers to the questions that we ask ourselves every day. What is wrong with me, why do I have cancer,how can I fight this myself. In the past 3 1/2 years, I have learned a lot about love, life and survival in world I never thought I would be part of. Reach out and grasp the Alternative knowledge that is out there, reach out and touch someone, but most important, reach out to our Creator, He is waiting with outstretched arms to protect and heal us and for us not to only pray but to visit Him where he is most present, in our hearts..He is the Divine Power and He will show us the way. May you blessed with God's Healing light today and everyday,
    Stay well and always remember, Let the Sun Shine In.

    RASUNSHINE
  • mopar
    mopar Member Posts: 1,972 Member
    #3
    HI BONNIE
    Sorry to hear you have to go through this 'waiting game' again. But, as always, I know you are trusting the Lord always to open doors and lead you in the right direction. I'm standing on His promises with you!

    I do keep up with your CaringBridge journals. And, of course, here as well. My prayers for you are unceasing. And I am always blessed by your spirit and strength.

    The last I heard from MM was just after her surgery. She said she would write again when she was fully recovered. I am hoping to hear from her soon.

    The cactus you sent to me is really doing well! Everytime I water my flowers I look at them and remember your thoughtfulness AND your strength.

    I'll pray that Compassionate Care will be there for you in this next step.

    As always,
    Luv, hugs and prayers!
    Monika
  • MichaelaMarie
    MichaelaMarie Member Posts: 163
    #4
    mopar said:

    HI BONNIE
    Sorry to hear you have to go through this 'waiting game' again. But, as always, I know you are trusting the Lord always to open doors and lead you in the right direction. I'm standing on His promises with you!

    I do keep up with your CaringBridge journals. And, of course, here as well. My prayers for you are unceasing. And I am always blessed by your spirit and strength.

    The last I heard from MM was just after her surgery. She said she would write again when she was fully recovered. I am hoping to hear from her soon.

    The cactus you sent to me is really doing well! Everytime I water my flowers I look at them and remember your thoughtfulness AND your strength.

    I'll pray that Compassionate Care will be there for you in this next step.

    As always,
    Luv, hugs and prayers!
    Monika

    I'm here, Bonnie.
    Hello Bonnie and Monika, and all Teal Warriors,

    Thanks for your concern about me. Like everyone else, Bonnie, I'm sorry to hear that your chemo isn't working now. Hopefully, you will get the okay on the new drug!!! I wanted you to know how many times I thought of you and your courage when I was in the hospital. I was pretty down in the dumps when I was being wheeled down for surgery the second time in four weeks, and I started thinking of how much you have been through, especially with the cell transplant. I, too, kept running high fevers that they were very concerned about, and I remembered all of the fevers you ran, and that helped.

    Aside from extreme fatigue from the constant battle with anemia (severe), I'm actually doing fairly well now. It's nice to get out of bed without that "surgical incision" pain. And, I'm still just so grateful that I didn't come out of surgery with a "bag" as they had warned me. Just that month of changing the dressing constantly on the drain got old.

    In another week I should be doing my 6th cycle of Topotecan, that is if my RBC is high enough. After that, I don't know what will happen. My doctor hasn't said anything, but he did tell me that my CA-125 would go up during my lapse of treatment with the surgeries. So, that sounds like he doesn't expect any remission time when off the drug. I haven't even asked them what my number is...........they never volunteer it either.

    I'm sorry I haven't posted much since my surgeries. With daily treatment for a week at a time, then continual trips to the lab and doctor appointments, I find myself so fatigued that it is a struggle to keep up with things. My daughter and granddaughter have been over a lot also, which is so wonderful.

    Anyway, Bonnie, I'm so hoping and praying to read your next post that you HAVE gotten approval!!!!! And, thanks again and again for being such an inspiration to me and to all of us! You just don't know!!!!

    Love and hugs,
    MM
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
    next chemo
    Hi Bonnie, thanks for posting an update. I'm sorry to hear you have to move on to another chemo. I guess the good news is that you do have options for new chemos. You must be a pro at filling in all that paperwork to make this happen, although I know it is not a piece of cake. My prayer for you is strength to once again go through the grueling process of doing all of that, and peace that you are in God's hands.
    Thank you for being the light that you are to so many!
    Warm hugs and prayers,
    Kathleen:)
  • Karen1418
    Karen1418 Member Posts: 48
    #6
    Clinical Trial
    Hi Bonnie,

    There was a very interesting article in the St. Petersburg Times on June 7th about a very, very new clinical trial in Tampa that is attempting to find which drug will work with which patient through DNA testing. Don't know if that's anything that would interest you, but I wanted to mention it.

    Karen
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #7
    kayandok said:

    next chemo
    Hi Bonnie, thanks for posting an update. I'm sorry to hear you have to move on to another chemo. I guess the good news is that you do have options for new chemos. You must be a pro at filling in all that paperwork to make this happen, although I know it is not a piece of cake. My prayer for you is strength to once again go through the grueling process of doing all of that, and peace that you are in God's hands.
    Thank you for being the light that you are to so many!
    Warm hugs and prayers,
    Kathleen:)

    Paper work and compassionate use
    The finance people at the U do all the paperwork I just give them numbers when needed and sign it once they are done. I did get the compassionate use but have been running high fevers so chemo yet. I hope they can figure it out and give me some antibiotics to get over whatever my body is fighting.

    MM so good to read your posts ~ you have sure been missed.

    Many thanks to all of you for your continued support. Hugs ♥ Prayers Bonnie

    PS Compassionate use is given through the drug companies when you have no way to cover the cost of treatments.
  • saundra
    saundra Member Posts: 1,370 Member
    #8
    Yikes
    I pray that they will discover what is causing the fever and get it cleared up fast. We are getting a new Women's Health Center here named for Laura Bush and their focus is going to be on breast and ovarian cancer plus bone density. Should open in about a year. Research will be done locally. I am so excited. The announcement this week was the first to mention "ovarian". I just think the more research in the more places, the better off we will all be.

    Keep us posted on compassionate care because with the cuts in Medicare coming we may all be on it.

    Sending lots of Hugs and Prayers your way. Saundra
  • Cindy54
    Cindy54 Member Posts: 452
    #9
    saundra said:

    Yikes
    I pray that they will discover what is causing the fever and get it cleared up fast. We are getting a new Women's Health Center here named for Laura Bush and their focus is going to be on breast and ovarian cancer plus bone density. Should open in about a year. Research will be done locally. I am so excited. The announcement this week was the first to mention "ovarian". I just think the more research in the more places, the better off we will all be.

    Keep us posted on compassionate care because with the cuts in Medicare coming we may all be on it.

    Sending lots of Hugs and Prayers your way. Saundra

    For Bonnie
    I also hope that your request for compassionate care comes through. Every day I read about new drugs for different types of cancers. My hope is that the next one will be the one that blows that beast away from you. Until then, I hope they get that fever out. Bonnie I also follow you on caring bridge, and I wish you all the best..hugs and prayers....Cindy
  • ColleenN
    ColleenN Member Posts: 73
    #10
    Hang in there
    Hi Bonnie,
    I hope you're feeling better by now. At least it's finally warming up weather wise. That can't hurt! Take care.
    Colleen
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    #11
    ColleenN said:

    Hang in there
    Hi Bonnie,
    I hope you're feeling better by now. At least it's finally warming up weather wise. That can't hurt! Take care.
    Colleen

    Bonnie
    I hope by now that the fevers have gone and your getting better.I also hope that your request for compassionate care comes through. Sending you lots of Teal Hugs and Prayers.
    Love, Terry
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #12
    ladyjogger31 said:

    Bonnie
    I hope by now that the fevers have gone and your getting better.I also hope that your request for compassionate care comes through. Sending you lots of Teal Hugs and Prayers.
    Love, Terry

    to all
    this is short, i did get the drug approved but can't have it because of fevers. I am feeling pretty aweful and reading and focusing is hard with the headaches the fever brings. Know even though I have not responded to posts you are all in my prayers. I called my nurse's v/m at 6am begging for antibiotics or something and if they can't help I will go to my family dr or maybe even the ER. A week of headaches and high fevers has drained my body. Love Ya Bonnie
  • jane65
    jane65 Member Posts: 277
    #13
    BonnieR said:

    to all
    this is short, i did get the drug approved but can't have it because of fevers. I am feeling pretty aweful and reading and focusing is hard with the headaches the fever brings. Know even though I have not responded to posts you are all in my prayers. I called my nurse's v/m at 6am begging for antibiotics or something and if they can't help I will go to my family dr or maybe even the ER. A week of headaches and high fevers has drained my body. Love Ya Bonnie

    Bonnie
    Dear Bonnie,
    I just wanted you to know that you're in my thoughts and prayers for a return to good health.

    You're a brave gal, and I truly hope the doctors get the fevers and headaches under control ASAP.

    Jane
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #14
    ((((Bonnie)))) Just a hug, and sending prayers and good vibes...
    I know how strong you always are, and even now when you are 'off your game', your strength and good spirits shine through. I hope that you get yourself some help with the fevers and headaches today. You will be in my prayers as you dig deep within you to ride out this latest bump in the road. Big big hugs. A lot of people love you, girl.
  • saundra
    saundra Member Posts: 1,370 Member
    #15
    BonnieR said:

    to all
    this is short, i did get the drug approved but can't have it because of fevers. I am feeling pretty aweful and reading and focusing is hard with the headaches the fever brings. Know even though I have not responded to posts you are all in my prayers. I called my nurse's v/m at 6am begging for antibiotics or something and if they can't help I will go to my family dr or maybe even the ER. A week of headaches and high fevers has drained my body. Love Ya Bonnie

    Adding more
    I am adding more prayer time for you today, Bonnie. You are in all of our thoughts and we are sending all our good thoughts to you. Saundra
  • kayandok
    kayandok Member Posts: 1,202 Member
    #16
    BonnieR said:

    to all
    this is short, i did get the drug approved but can't have it because of fevers. I am feeling pretty aweful and reading and focusing is hard with the headaches the fever brings. Know even though I have not responded to posts you are all in my prayers. I called my nurse's v/m at 6am begging for antibiotics or something and if they can't help I will go to my family dr or maybe even the ER. A week of headaches and high fevers has drained my body. Love Ya Bonnie

    Dear Bonnie
    That is too long to have a fever and headache! My prayers are with you for a quick recovery. What is the next chemo for you?
    Warm hugs,
    Kathleen:)
  • kris43
    kris43 Member Posts: 275
    #17
    BonnieR said:

    to all
    this is short, i did get the drug approved but can't have it because of fevers. I am feeling pretty aweful and reading and focusing is hard with the headaches the fever brings. Know even though I have not responded to posts you are all in my prayers. I called my nurse's v/m at 6am begging for antibiotics or something and if they can't help I will go to my family dr or maybe even the ER. A week of headaches and high fevers has drained my body. Love Ya Bonnie

    Our Chick Who Sticks
    I have not been on the board in a couple of weeks and the first thing I see is that our dearest Bonnie is in the hospital. I am so sad to hear this...........I hope someone will keep us updated as to how you are doing and that you know you are being prayed for, and loved from afar by many. Hang in there friend. Many hugs to you. Kris
  • LPack
    LPack Member Posts: 645
    #18
    See You!
    Bonnie,

    I am still planning on seeing you in August!!! Praying you feel better and get stronger, girlfriend!1

    Love and prayers,
    Libby ♥

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