Phone call: Stage IV BC

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Kimberly, thanks for the welcome! I intend to fight this as long as God gives me strength to do so. My onc said the act that I am outwardly healthy is in my favor as I am strong enough to treat. We just have to learn what is the best treatment to begin with.

    Bette 

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited July 2009

    I found out about my mets just over a year ago, summer of 2008.  I cried, called my Best friend. After we went to the Doctor for the 'news' she and I went and picked up a bottle of wine, cigerettes and hamburgers. I cried and we laughed.

    It isn't the end.  It is a new way of living. The future can still be bright. I have hope that I will be one of the lucky ones who lives long with this, you can too.

    hang in,

    Janis

  • coonie
    coonie Member Posts: 7,618
    edited August 2009

    Bless you Bette.....I pray your Guardian Angel works overtime to keep you from worrying and to give you peace and comfort. ((((((((((((((((((((gentle hugs))))))))))))))))))))

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    After a rough night Friday, crying a lot and just being angry about my Dx and the prospect of not being here for important things like grandchildren, I am feeling better.

    Tom and I went out for breakfast yesterday and to Longwood Gardens where we drank in the beauty of God's creation as we walked and talked. Today the elders of our church gathered around me and prayed. I feel loved and encouraged.

    Tomorrow starts more medical stuff. Appointments on Monday,Tuesday, Wednesday as well as waiting for a call from the PARP trial. I feel rested and ready to fight again.

    Bette 

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited August 2009

    Bette,

    I hope you find strength in your doctors. Know that we are with you in spirit. Hugs, Mazy

  • marejo
    marejo Member Posts: 1,356
    edited August 2009

    Dear Bette,

    I just happened upon your thread and when I read your last post....about the elders gathering around you and praying.....well, I just had to respond.  What a beautiful thing.  Absolutely.  God's people gathering together in faith....believing in His absolute power and resting in that......it brings Peace.  Thank you for sharing that and I also ask God to give you His peace and Healing.  May what you go through and the witness you give bring Glory to God our Father.

    Hugs to you ...

    Mary Jo

  • Maryiz
    Maryiz Member Posts: 975
    edited August 2009

    Bette, I just thought I would chime in here.  My oncologist told me about a patient of his, stage IV IBC, many,many years later, doing well, 2 more children and enjoying life.  He also had another IBC patient, stage IV, who did stem cell transplant and doing very well.  I know that stem cell transplants for solid tumors are still controversial, but it appears that there are many options out there, PARP trials, transplants, targeted therapies.  You have the advantage of being in good health, with no cormorbid factors, hang in there, baby.  Maryiz

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited August 2009

    Bette,

    The power of prayer is awesome. You never know when one of us will be touched by a miracle. I can remember when I was on chemo and so many churches had me on their prayer lists. I could feel it ,I swear ,everytime they prayed for me. I hope you feel it too. Hugs, Mazy

  • joaniji
    joaniji Member Posts: 733
    edited August 2009

    Dear Bette,

    I am just chiming in here to wish you the best during these few days of appointments and exams. I know that people poking and proding at you can be so draining and scary. I found out in January that I had mets to the bone and small ones in the lung and it was definitely a shock to the system. Please allow yourself time to do whatever you need to do - rant, cry, wonder about the "what ifs..", sleep, eat...It is so important to allow your feelings to be expressed. I have no doubt that given some time you will feel more energized and capable of moving forward in your life. Living with mets is possible and for most, life continues to be meaningful and comfort for a long period of time. It sounds like you have a supportive network available to you and of course, you have this site to come to. Please keep us updated. Many wishes for a smooth few days. Take good care, Joani

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Thanks to all you amazing women who have gathered around me in support and prayer!

    I had a bone scan this morning to check for more mets, and will get the results tomorrow PM. Tomorrow are two more medical appointments, then Thursday morning we leave for VA for a consult on the PARP trial. 

    We have booked a hotel room to break up the drive. Tom says Virginia is for lovers.

    Bette 

  • hollyann
    hollyann Member Posts: 2,992
    edited August 2009

    Bette, good luck with all your scans, sweetie!.....Can I just say again, THIS SUCKS!.....I am so sorry you are goin through this, but like the other ladies said, the power of prayer is amazing!.....I am not stage 4 but I do wish to extend my support and heartfelt prayers to you......((((Bette))))

  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2009

    Bette, you are in my prayers.

    Tom says Virginia is for lovers? Well, it seems to me that anywhere you and Tom are is for lovers. May he continue to give you strength.

    Leah

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Leah, Tom is a hopeless romantic and can make a lover's hideaway out of a budget motel room. I am looking forward to getting the PARP trial appointment over with and relaxing in our room. It is a blessing to have him at my side.

    Bette 

  • coonie
    coonie Member Posts: 7,618
    edited August 2009

    Bette......you've been in my prayers every day. I'm so sorry you're having to experience this JUNK!! I pray for strength, wisdom and courage for you, your family and your doctors.

    (((((((((((((((((((((((((((((gentle hugs)))))))))))))))))

  • Jane_M
    Jane_M Member Posts: 1,549
    edited August 2009

    I do believe in the power of prayer.  God ALWAYS answers prayer; sometimes his answer is yes, sometimes it's no, sometimes it's not now.  That said, I'd like to relate an experience I had that made me a believer in the power of prayer.

    Within weeks after my 2nd son was born, he developed a fever and wouldn't nurse.  I took him to the pediatrician in the middle of the night, then to the ER where they did a spinal tap, etc.  They couldn't immediately ascertain what was wrong, but they knew they had to admit him because he wasn't eating and he had the fever.  I called our Pastor to ask for prayer.  At that time they were meeting on Thursday mornings at a member's house for group prayer.  They met at 1 PM.  Shortly after 1 PM that day, my son's fever broke, he perked up and started getting better.  We later found out that he had Coxackie virus type II.  Some people would say it was coincidence that he rallied at the exact time they were praying for him.  I don't believe that.  I believe that God directly answered that prayer.  

  • chola2009
    chola2009 Member Posts: 4
    edited August 2009
    Hi Bette...don't be scared, just keep believing for the better. Everything will be fine. When you get a chance visit our site we have just created to help people going thru a crisis. It will benefit you, I promise you (www.awonderfultree.net).
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Bone scan negative. No bone mets at this time. Praise the Lord!

    Bag is packed and ready to go to VA tomorrow.

    Bette 

  • kjbell
    kjbell Member Posts: 974
    edited August 2009

    That is wonderful news Bette. You and Tom have to be thrilled! I hope all goes well at your next appt.

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited August 2009

    Bette...Congrats!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • BonnieK
    BonnieK Member Posts: 655
    edited August 2009

    Bette,

    Such good news about the negative bone scan!  I'm still thinking about you every day and praying for you every night.  Enjoy this mini-medical vacation with Tom as much as possible.  -bonnie

  • Faith316
    Faith316 Member Posts: 2,431
    edited August 2009

    Bettelou,

    I also have IBC.  Dx 6/09 after having been dx with IDC in 4/08.  You asked about Xeloda.  My local onc. referred me to MD Anderson.  I had an appt. there on July 9.  On July 10, I started taking  Xeloda and Tykerb.  (I took Adriamycin, Cytoxin, Taxol and Herceptin last year.)  After only 1 day of the new chemo drugs (which are both oral instead of infusions, by the way) I could see improvement in my rash.  Today, is Aug. 6.  It has not even yet been a month of being on these drugs, but my rash is totally gone.  All I have is some skin discoloration that is slowly fading.  I am very fair-skinned and scar easily, so I know that is why the skin is still discolored from under where the rash was but it is definitely going away.  The rash has actually been totally gone for at least a week -- meaning that it took only about 3 weeks for these new drugs to really work for me.  

    You are going to do fine.  And, like all these other women have told you, absolutely prayers work and God is with you every single second of every single day of your Life.  He IS there.  Feel Him and be comforted in knowing that you are a child of God.  Cancer is a word.  Not a sentence. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Faith,

    Thank you for your words of encouragement. We are waiting for a call from the PARP trial to see if I got in. If not, treatment at home may very well be Xeloda. Have you noticed any SE's from it? It is great that it is improving your IBC.

    Bette. 

  • Faith316
    Faith316 Member Posts: 2,431
    edited August 2009

    Side effects I am having include lots of diarrhea, numb tingly hands which are also extremely dry and getting lots of little cuts all over my fingertips just like when I took Taxol and acne.  Now, remember, I am on Tykerb AND Xeloda, so I don't know which SEs are from which drug.  The diarrhea is the most problematic, but if the drugs are killing cancer cells, I can live with these side effects.

  • vickib
    vickib Member Posts: 1,184
    edited August 2009

    Bette -

    So sorry you have to through this again, especially so soon! Praying for you.. 

  • spar2
    spar2 Member Posts: 6,827
    edited August 2009

    Bette, am praying for your peace and healing, strengh and courage to get through this and you will with the Lord by your side.  God be with you and will be thinking of you.  Please let us know how you do.  sending hugs and love.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    I got into the PARP inhibitor trial on the control arm, so will be getting Gemzar and carboplatin to start, with BSI-201 added if I do not improve. Chemo starts next Friday. Lots of trips to Arlington, VA from the Philly area.

    Right now, I am relieved to know I have a start date, but am freaking out periodically about the hair loss thing. I know Tom loves me with or without hair; I was bald and browless when he proposed. I just am not looking forward to the day when it starts to fall out in the shower, or coats my pillow in the morning. It is already fairly short. I just wish this part were over with.

    Bette 

  • spar2
    spar2 Member Posts: 6,827
    edited August 2009

    So glad you got a start date and pray it works.  It is hard to lose your hair but it will grow back.  You can have some more fun with scarves and wigs and hats,  I mostly wore doo rags out of bandanas and my teenage grandson wore them with me.  Wishing you the very best.

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited August 2009

    Bette

    I just came upon this thread and wanted to wish you the best of success in the PARP trial as well as with everything. I am local to you, and also love Longwood and the peaceful atmosphere there. 

    I just finished chemo 2 weeks ago (yay) but obviously am still bald. I am not minding it that much. BUT I wanted you to know that Boscov's has a BIG selection of very long narrow scarves on sale - around $10 each - and you can tie/wrap them easily and they look great. I like them A LOT better than the expensive scarves I got from the cancer-specific websites.  I think you have Boscov's near you, right? I have to say - they really make me feel pretty and I get lots of compliments on them! Might be worth checking out if you have time.  PM me if you need any advice on the tying part. (I can't believe I even wrote that - I am THE WORST with hair/makeup or anything cosmetic. But I really do have a handle on the scarf thing. Who would have thought?)
    Wishing you and Tom the best.

    Amy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Amy, My daughter and I went shopping in Boscovs this weekend and I got a pretty new scarf to add to the wardrobe from last chemo. I have also gotten some great hats there.

    I'm thinking it might be time for a new wig to add variety. Any good sources?

    Had my first infusion yesterday, so the hair will be gone in 10-14 days. I am praying that it will search and destroy the tumors in my lungs and chest. They have grown over the past month without treatment.

    The trip to VA was 264 miles round trip. Tom is willing to do it to buy me as much time as possible. I also praise the Lord for safe trips and for planning this and every day of my life, no matter how long or short.

    Bette 

  • Faith316
    Faith316 Member Posts: 2,431
    edited August 2009

    Just remember, with God, there is ALWAYS hope! 

    I was diagnosed in June with IBC after having been dx with IDC last April.  Had lumpectomy, chemo, radiation last year and now IBC.  All the doctors tell me that IBC patients usually have lots of distant mets at the time they are diagnosed.  I have now had in the past 2 months another brain MRI, 2 PET/CT scans, 3 mammograms, 2 ultrasounds and lots of bloodwork and they are all saying the same thing --- NO mets. 

    My doctors are really shocked.  Me and My God are not.  So, even though the "textbooks" say I should be having lots of mets, the textbooks are not always right.  Remember, with God there is ALWAYS hope.  My God is bigger than any mountain that I have to climb.  Keep the faith and keep hoping.  You can get through this.

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