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IBC DIAGNOSED, LETS SHARE OUR STORIES!

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Comments

  • cheers247
    cheers247 Member Posts: 57
    edited September 2009

    Hi all, just wanted to update you... I finished the Taxol, I have lots of neuropathy in my feet now.  My repeat scans will be next week, 9/21 & 22.  My surgery has been moved up to 10/7 (double mast & total hyst) because the pink area has returned and the tenderness/swelling is back.  I'm getting really discouraged because of this... I feel like the taxol did not work at all.  When I was on A/C the pinkness/swelling/tenderness was completely gone.  I'll continue on Herceptin every three weeks, and start Aromasin and Zometa soon.

    Bette, I've been praying for you!!  I hope you are doing well.

  • cheers247
    cheers247 Member Posts: 57
    edited September 2009

    Hi Bonnie, My last Taxol/Herceptin was 9/8-9/9 (it took 40hrs to infuse... allergy) My scans are 9/21 & 9/22 and my Surgeries are 10/7.  My labs are so low, my BS doesn't want to do the surg. until it's been 4 weeks since my last chemo.   Are you NED now??  I sure hope so!  They are doing my hyst with the robot.  I'm having a double mast because the left breast shows some changes, but there is no cancer detected there, but chances are there could be in the future, so I'm fine with having a double.  I see my Onc. tomorrow for labs again and to talk about when I will start Zometa (it will be every 6mos for 2 years) and Aromasin.  I'll keep you posted!!   Thanks so much for all of your knowledge! xoxo Jessica

  • bettelou68
    bettelou68 Member Posts: 151
    edited September 2009

    No treatment today due to elevated liver enzymes, high blood sugar and recovering from pneumonia. Treatment for next week is also in jeopardy pending results of liver function tests on Monday. This gives us a break from driving to VA, but I am concerned about being dropped from the trial if my body can't take the Gem/Carb. Also wondering if those lung mets will use this opportunity to start growing again,

    This is all in God's hands. I can't improve my test results by worrying, so I am choosing to rejoice in this day of life that I have been given.

    Bette 

  • cheers247
    cheers247 Member Posts: 57
    edited September 2009

    Bonnie, Thanks so much for your support and help!!! It's so great that you went from stage IV to NED!!!  I'm so happy for you, congrats on your recent scans!!  I'll let you know what I find out about my scans next week.

    Bette, I'm sorry your liver enzymes are up, and that you are dealing with pneumonia!  You are in my daily prayers!!!

     xoxo Jessica

  • bettelou68
    bettelou68 Member Posts: 151
    edited September 2009

    Jessica, Thank you for your prayers. I am feeling much better today. This is the weekend, and I get to relax and not think about BC or medical things until Monday's tests.

    I am praying for my liver enzymes and blood glucose levels to fall, and for the lungs to clear out so that I can have chemo next week.

    Today Tom sent me six roses for our six month wedding anniversary. That seems like a short time to be married, but so much has happened with my IBC that it also seems like a very long time ago.

    Bette 

  • g94u67
    g94u67 Member Posts: 91
    edited September 2009

    Hi everyone (Hi there Bette!)

    I just began Ixempra and Xoleda on 9/2.  Took Xoleda for 2 weeks and Onc. wants me off for 2 weeks then back on. I didn't experience bad SE's just the achiness and slight nausea. 

     My question and concern is now I'm off Xoleda, my rt. breast still has pink rash. Crusty areas are drying up though. Breast has been throbbing all last night & today. I've only been off the Xoleda 1 day and it has me worried. My next TX is Wed. for Ixempra. 

    Should I be experiencing these symptoms? Worried this TX may not work since this is my 2nd bout of chemo.

    Jeannine

  • bettelou68
    bettelou68 Member Posts: 151
    edited September 2009

    Jeannine, I am not an expert at how soon your chemo should work, but I will be praying for you. I still remember my throbbing breast pain from last year, and it lasted at least a month into treatment for me.

    Tomorrow I have tests to see if I am healthy enough for chemo this week. I hope so. It makes me a little anxious to be off it.

    This is all in God's hands, so I will leave it there and not worry.

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited September 2009

    Bette:

    Good luck with your tests today.  Keeping my fingers crossed that you will be able to have your next treatment.

    Hugs

    Laura

  • cheers247
    cheers247 Member Posts: 57
    edited September 2009

    Bette, I'm praying for you to be able to get back on chemo, and for your tests. 

    I had my bone scan and breast and chest wall MRI's today.  My PET CT is tomorrow (Tues).  I will have the results by Thursday.  I have my pre-op's next week with the breast surgeon and the Gyn Onc. Then my bilat. mast & total hyst will be on 10/7.

    Thanks for your prayers and well wishes.  Much Love, Jessica

  • Caseysmom
    Caseysmom Member Posts: 70
    edited September 2009

    Jessica:

    Good luck with your upcoming tests.

    Hugs

    Laura

  • g94u67
    g94u67 Member Posts: 91
    edited September 2009

    Thanks Bette for that.  I'm so ready to chop this bad boob off!

    Hope you can make chemo this week. I go tomorrow.

    Good luck Jessica with your tests!

    Prayers,

    Jeannine

  • cheers247
    cheers247 Member Posts: 57
    edited September 2009

    Thanks Bette & Jeannine!!

    I had my bone scan, breast & chest wall MRI's and PET CT yesterday and today. I have had 5mos of chemo, TCH, A/C & TH. My pre-ops are next week, and my surgery (bilat MRM & total hysterectomy) is scheduled for 10/7. My concern is... when I was on A/C all of my outward IBC symptoms disappered, then when I went to taxol/herceptin, the pinkness and skin thickening came back, but not as much as at the time of diagnosis. My BS told me that he wanted my scans to show that I am completely free of pathology before surgery. With the re-apperance of the pinkness etc. my Onc. wants me to have my surgery ASAP (it was scheduled for 10/21. So it's been moved up 2 weeks, and my chemo just ended last week). My scans showed that the primary tumor is still there, but is smaller, and the lymphnodes that were + still look suspicious. So it seems that I have had a less than ideal response to chemo/herceptin. I've started Aromasin this week, and will start Zometa after my surgery,
    and of course continue with Herceptin. Has anyone else had an incomplete response to chemo and still had a good outcome?? Thanks!!

  • bettelou68
    bettelou68 Member Posts: 151
    edited September 2009

    Jessica, I had an incomplete response to chemo. The redness and swelling disappeared with AC, then started to come back on Taxol. My mastectomy was 4 weeks after the end of chemo. Complications delayed rads for six weeks. Two weeks after completion of rads I had a suspicious CT scan, which led to a positive PET and biopsy for lung mets. I don't think my case is typical, as I had some very quirky reactions to chemo. I am also Triple Negative, which makes my cancer more aggressive and harder to treat. You have the advantage of being able to use Heceptin and Hormanal therapy.

    I am a woman of prayer, and will add you to my list, especially on 10/7 and for your pathology report afterwards. 

    Bette 

  • bettelou68
    bettelou68 Member Posts: 151
    edited September 2009

    We are off to VA to get my first set of scans as part of the clinical trial. We hope to hear that my lung mets have shrunk in response to treatment. In addition they will scan my liver, which has been inflamed for three weeks and is getting worse. 

    Doctor appointment tomorrow to learn results of scans, so we are staying overnight.

    Virginia is for lovers!

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited September 2009

    Bette:



    Good luck with your scans praying for good results.



    Hugs

    Laura

  • g94u67
    g94u67 Member Posts: 91
    edited September 2009

    Jessica,

    Are they giving you Zometa (for bone mets) or Xoleda which is what I'm taking.

    My tumor responded initially to ACT but then when I finished my 8 rounds bc started to transgress to IBC. My breast since has become pink with various rashes (painful Frown) Both of my Oncs. recommended to put me on neo-adjuvent chemo again before surgery.  Have you sought a 2nd opinion? I wish I would have seen the 2nd UCLA Dr. first. My surgeon also held off on surgery to get Onc. opinion. I will have DMX, RADS and oophrorectomy after I am done with chemo. Fun, fun..

    Get a 2nd opinion Jessica before surgery!

    Good luck to you Bette on your lung & scan results. Praying for good news! Enjoy the amor time with Tom.

    Prayers & (((Hugs)))

    Jeannine

  • activern
    activern Member Posts: 111
    edited September 2009

    My love and prayers to all of you.  I am reading these posts and sometimes feel stronger to fight this but realistic as well.  I am simply taking a day at a time.  I will be getting my third dose of A/C next Monday; have just notified my company that I will be off after this on sick leave; filed for short term disability and will be applied for SSD.  I want to rest as much as possible and travel between treatments as much as I could and what I can afford.  I have the benefits; paid a bunch of money to SS and have a retirement benefit that I can use early on disability.  Working and doing chemo together is too stressful and can cause me more problems.  I love this site - like writing in my journal but difference is I am confiding in friends!  love you all.

  • bettelou68
    bettelou68 Member Posts: 151
    edited September 2009

    Off to doctor to review the results of my lung and liver scans with a ton of questions.

    Received discouraging news from PCP yesterday. My skull x-ray shows lesions suspicious of cancer. I suppose I will need more tests for this. Don't know the implications on my treatment or on the cliical trial. My foot pain turned out to be arthritis. Annoying, but at least I can exercise.

    Please pray that the skull lesions are not cancer, and that there are no brain mets.

    Bette

  • g94u67
    g94u67 Member Posts: 91
    edited September 2009

    Bette, I prayed hard (really hard) this morning for us( & all my BC sisters!

    Pastor Matthew Hagee said his Grandmother fasted for 3 years to have her son receive his miracle to end his epilepsy. She was also supposed to die at age 63 from termincal cancer and guess what? She's still here @ 93 yrs. young. and so can we with devotion and perseverance!

    Happy your foot has only arthritis. So sorry you have another bump in the road.

    Stay strong & Persevere!

    (((((Hugs)))),
    Jeannine

  • Caseysmom
    Caseysmom Member Posts: 70
    edited September 2009

    Bette:



    Praying real hard that the skull lesions are noncancerous.

    Hugs
    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited September 2009

    Had a brain MRI last night to check for brain mets. Just arrived home in PA. On oxycontin for pain, so very sleepy.

    Bette 

  • activern
    activern Member Posts: 111
    edited September 2009

    Bette: I am praying that your brain MRI is negative.  Every new suspicion for mets makes us so "tingly" - I know my heart starts with its palpitations.  But prayers conquer all - we are all doing this a day at a time.  Love.

  • bettelou68
    bettelou68 Member Posts: 151
    edited September 2009

    Thank you, Vilma.

    The oncology social worker at Virginia Hospital Center gave me a bracelet yesterday that says "Expect Miracles" I am a child of God, so that is what I am doing.

    Bette 

  • cheers247
    cheers247 Member Posts: 57
    edited September 2009

    Bette, I am praying for you daily, I think of you all the time!

    Jeannine, I will be starting Zometa (in a clinical trial) after surgery, I started Aromasin this week.  I did get a second opinion last week, and he agreed with my current plan. My Dr's consult with MDA.  I'll have a bilat & total hyst on 10/7, and an axillary node disection, on the IBC side.  My pre-ops are scheduled for this week, I'll keep you posted. 

    Thanks for your support and prayers!!! much love to you all!  Jessica

  • Caseysmom
    Caseysmom Member Posts: 70
    edited September 2009

    Bette:

    Just checking to see if you had any news on your brain MRI.  Still praying real hard for negative results. 

    Jesssica:  Good luck with your pre-op tests.

    Amber:  Sending lots of prays to  you and your family.

    Big Hugs to all

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited October 2009
    To my breast friends,

    I got unwelcome news from the oncologist today. Skull and spine mets causing my pain, fevers may be from tumor growth. Another MRI, monthly Zometa and perhaps radiation to the spine in my immediate future. I should start feeling better as the tumors are treated. Still waiting on chemo schedule for the PARP inhibitor branch of the trial.

    Pray for God to grant me grace to get through the pain until the chemo and Zometa start to work.

    Bette 
  • BonnieK
    BonnieK Member Posts: 271
    edited October 2009

    Bette,

    My thoughts and prayers are always with you, and I am truly sorry that you now have skull and spine mets to deal with on top of everything else.  My prayers are going up for quickly shrinking tumors so you can begin to feel better as soon as possible.  You are the strongest woman I "know" and you will get through this with grace and faith.  --bonnie

  • cheers247
    cheers247 Member Posts: 57
    edited October 2009

    Bette, I'm so sorry to hear this news, my daily prayers always inclued you, and always will!

    My surgery is tomorrow 10/7 (bilat + ALND + total hyst)  I plan to go home on Friday, I'll check in when I get home. 

    Thank you for all of your support and prayers!  Much love, Jessica

  • activern
    activern Member Posts: 111
    edited October 2009

    Bette - my love and prayers to you.  Is your pain under control?

  • Caseysmom
    Caseysmom Member Posts: 70
    edited October 2009

    Bette:  I am so sorry to hear this sad news.  Praying that the chemo and rads will take care of these nasty mets.  I know that you can beat this your faith is very strong and you have the support of a wonderful husband.

    Jessica:  Good luck with your surgery today.

    Amber: Still praying for you and your family.  I hope the pain is under control.

    Lots of love and hugs

    Laura

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