IBC DIAGNOSED, LETS SHARE OUR STORIES!
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I am so grateful to all of you who have shared your stories, your struggles, and your support on this thread. I am posting to give an update on me. After battling my cancer for 2 years and several chemos, hormonals, herceptin, zometa and radiation, nothing worked. My cancer continued to grow or have new tumors pop up throughout my body. This IBC is just so fast growing! I made the difficult decision to stop the chemo before it killed me. The chemo was killing me and not the cancer. I was so sick, in bed 22 hours a day, had so much pain, couldn't eat, I thought I was dying.
When I quit chemo, my doctor gave me 3 months to live. That was the middle of April. I am still here and doing great. I have had hospice care for the past 3 months, and they take such good care of me, physically, and emotionally. The nurses, doctor, and social worker are great with me, and with my kids. My nurse keeps me pain free, and I am able to do so much more than I did when I was on chemo. I am slowing down a little bit now, and sleeping more as the cancer grows. I still feel good when I am awake, and I have been able to spend precious time with my family.
I am so grateful to have survived IBC for as long as I have. So many of our IBC sisters died from it sooner than the 2 years I have been blessed with. When I was first diagnosed, I didn't think I would survive 1 year, let alone 2 years. I am just grateful for every day that I have. Every day is truly a gift.
My decision to quit chemo was a difficult one, but I truly believe that the chemo would have killed me sooner than the cancer.
I wish all of you strength as you continue your fights. I pray that the chemo and treatments work for you.
Much love to all of my dear sisters!!!!
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Amber, just want you to know that I have been praying for you & your family. You are such an inspiration to me & so many others. Even though I have never had the privilege to meet you, I feel so blessed to hear about your journey through your blog & on BCO. You've handled it all with such grace. Thank you for sharing. May you continue to have strength & peace each moment of every day.
((((HUGS))))
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Amber, I am inspired by your courage and grace. Enjoy every minute with your precious children and DH.
My IBC is growing fast right now. I have survived one year and am hoping for more. Pretty soon I will be starting chemo. I am praying that my QOL will make it worth it.
Bette
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Amber, though we have never met, when I read your blog I kept thinking GRACE, DIGNITY, FAITH and LOVE. Many prayers to you and your family.
BetteLou--to answer your question about Parp Inhibitors, Xeloda and Carboplat... I have residual cancer after neoadjuvant chemo and surgery, still stage III. They were thinking Xeloda with radiation and then xeloda for 3 months afterward but I wasn't comfortable with that as it is just one agent that works only on one part of the cell....I want combination therapy to try to ATTACK IT ALL. So this week I met with my Dr and she said that the drugs you mentioned are for Stage 4....studies with PARP have been for BRCA (+) but my Dr said they are now widening those to BRCA (-) also and using them in combo with Carboplat and Gemzar. Dr Harris from Yale recommends Avastin because it is a hot drug for TN because of where it hits in the cell cycle. A Dr from Seattle mentioned doing Avastin with a Taxene (either Taxol or Taxatere). Hope some of this helps you....unfortunately for me we have a FIGHT on our hands with insurance because I want to use some of these drugs but they aren't proved for Stage 3--ugh! And yes, as you can tell, I've done a lot of study to be prepared to talk to my Dr about options. Praying that all works well for you!
KM--so sorry you have had to join our sisterhood but GOOD FOR YOU for doing it early...I wasn't strong enough to get on forums til after my surgery. Hang in there. YOU ARE A FIGHTER and YOU CAN DO THIS!!
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cwrightrn, Thanks for the input on the PARPs, Xeloda and Carboplat. I am Stage IV, so they should be approved for me. At this point the goal is to slow or shrink the cancer, or at least for it to be stable. All of my doctors have told me that a this point they are no longer looking to cure my cancer but to treat it to give me as much time as possible.
I am also wondering about QOL with these proposed chemo regimes. I was very sick and hospitalized multiple times on ACT when they were trying to kill all the cancer. I want to enjoy some time with my new husband, not be sick ALL the time.
Tomorrow we may hear about the PARP trial. I just pray for wisdom for my doctors to choose the right course.
Bette
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My appointment to be evaluated for the PARP trial is on Thursday at 2 PM in Fairfax, VA. IBC is making a traveler out of me! We will stay the night before making the long trip back.
My prayer is that in VA or somewhere, we will find a good treatment that will put my stage IV to stage NED!
Bette
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My bone scan results are in. No bone mets!
Leaving for VA and the PARP inhibitor appointment tomorrow.
Bette
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Bette:
That is great news!! Good luck with your appointment.
Hugs
Laura
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PARP trial looks good. Now waiting to hear if I am accepted. We had a great time in VA when we were not doing medical stuff.
Bette
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Put your boxing gloves on and fight like a girl! I was diagnosed last October.....have been through 8 rounds of chemo, mastectomy, and 28 out 34 radiation treatments behind me. I am cancer free at the moment thanks be to God.... I am glad to see your doctors are going after this IBC with a vengeance. My Oncologist told me from day 1...this is an aggressive cancer and we aren't going to baby it. I had 4 rounds of the AC/combo followed by 4 rounds of Taxol ( Nov - April ) My tumor began shrinking dramatically after my 2nd round and wa gone by the time I went on the Taxol. My surgeon sent the breast to pathology after removing it and he called her in the operating room and wanted to know where the tumor was supposed to be. She went down to show him and it couldn't be found. The good news ...it wasn't in the skin....the not so good news 6 out 10 nodes were positive, but I know the radiation has taken care of that.
The sun WILL shine again.
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Praise God...Bettelou on your bone scan.
Praying for Amber.
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Bette: I'm glad to hear that the PARP Trail looks good. Keeping you in my prayers.
Hugs
Laura
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To all my "breast friends"I received a call from the clinical trial coordinator tonight. I am into the trial. It looks like I will be doing chemo again in August 2009. I start next week. I was randomly placed in the control arm of the trial, but can cross over to the experimental arm if I do not respond to gemcitabine and carboplatin.The waiting is over for now. I am not sure how I feel about chemo again and the long trips to Arlington, VA. To anyone in that area of the country, maybe we can plan a get together!Bette0
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Bonnie, I have mets to my lung, mediastinal and hilar nodes.
The clinical trial is for a PARP-inhibitor called BSI-201. It stops something called Poly (ADP-ribose) polymerase, a protein that repairs cancer cells and helps them replicate. I will be getting Gemzar and Carboplatin to start, adding the BSI-201 if I do not respond. I will have chemo two weeks out of three, with new scans to check progression (or regression!) after every two cycles. I will be in the trial as long as I do not get really worse or have dangerous SE's, up to two years
My last chemo with Taxotere was 12/17/08. I has a SLM with TE in January, and had so many complications that the TE was removed in March. I started rads in mid-April 2009 and finished on 5/26/09. For one month I took Femara, but had unacceptable SE's plus the growth of a lesion on my lung while I was on it. After a positive PET, the lung was biopsied, and found to be now TN ( I had originally been ER/PR+)
The trial is for TN Metastatic BC, which can be BRACA + or -. I am BRCA-.
Hope that answers you questions!
Bette
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I am so sorry for your problems and your worries. I know what that feels like. You have to follow the Drs. advice. You have to get your stuff done (the treatment) and then move on.
I was diagnosed with IBC (her2+) back in April 2005 at the age of 38. I went through 6 months of the nasty chemo that made me feel sick plus Herceptin for a year. I had a mastectomy on my left breast plus auxilliary lymph node removal on my #2 and #3 areas (underarm and above the boob). To follow up I had 8 weeks of radiation. I was given a 30% chance to live to October 2006.
Sweetie, I'm still here in August 2009 (totally clear of cancer) and ticking off my oncologist when I go for my yearly exams. We fight about lymphedema and my need to lift heavy items and do hard physical work at times (with a compression garment on). I refused to give up my life because there is more to life than just living....it is doing what you love. I raise parrots and there's a bunch of heavy work involved.
I still wonder if I will live long enough to finish out my husband's and my dreams but I'm still here. You will (unfortunately) always have that question now and down the road. Sometimes you will cry your eyes out thinking you will die because your feelings get going even after they say you are cured. That's OK. Other times you will reach the summit of joy because you are driving down the road with the wind and sun on your face...and you are ALIVE. That is what makes us alive.
My worrying brought me to this website this evening and I hopefully helped you. I made an appointment for my yearly tests so it gets my feelings going.
My good thoughts go out to you and my best advice is to let it all go after your treatment...do not let your life be dictated by cancer. I did not get reconstruction nor do I wear my fake boob. Obviously I am lopsided but who cares?
Good luck, sister.
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Cndy, Thanks for your encouragement.
I had my first infusion as part of the clinical trial I am in yesterday. After a night in a hotel it was good to nap in my own bed.
They have an oncology social worker at Virginia Hospital Center where I am going, and she came and talked with me while I was getting chemo. I will see her next week as well.
DH has been taking good care of me and has dinner in the oven. Today I am happy to be alive. Tomorrow is in God' s hands.
Bette
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Your story makes me want to weep. I was diagnosed in June with Invasive Micropapillary breast cancer. Your bravery, just in the telling of your story is inspiring. Thank you. And I wish you nothing but long health and happiness.
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Bonnie, You did not upset me.
I have just been feeling overwhelmed in general with all that is going on.
Today I am home with a fever. Hope it goes away so I can get chemo on schedule this week. The whole purpose of this is to get to NED.
Bette
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I am 32 years old with two very young children and was diagnosed with IBC 3 days ago. My scans are all pending, and I meet with an oncologist on Wednesday. I am so so scared for myself but even more for my husband and children. I was nursing my now 7 month old and was treated for "mastitis" and a "milk-filled cyst" for several months. I kept being told to stop nursing and continue antibiotics and everything would resolve. I had an u/s over a month ago that showed no suspicous signs for malignancy. I finally referred myself to a breast surgeon b/c I did not believe I just had mastitis. I had a biopsy immediately and got the call late Friday afternoon. The last 3 days have been an utter nightmare.
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lorieg~ Welcome. Sending you a big ((((HUG)))). So sorry that you had to join us, but you will find a lot of support, info & encouragement on these boards. I understand your feelings about being scared. I was right where you are now about 8 months ago. You are much younger than me though, I am 42 & have a 10 & 13 yr old. I am glad you followed your instincts & referred yourself to a breast surgeon. I did the same thing after 3 1/2 months of getting nowhere.
Things will move very quickly for you in the days to come. If you can, bring someone with you to your Dr. appointments because you will be receiving a lot of information, & it is easy to get overwhelmed. One thing I did was write down any ?'s in a notebook. I took it with me to every Dr. appointment & had someone take notes for me.
Please know I am thinking of you & am hoping you have great results on your scans! Keep us posted.
Hugs,
Kristen
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Lori,
I am so sorry that you had to find out on a Friday afternoon, with no professional to talk with over the weekend! That truly sucks!
Lori, I am now 2 years out and while the first year was a blur of doctor appts, I made a lot of new friends on the way. One of them was a fellow IBC survivor who was assigned to me when I asked my onc nurse if she could connect me with someone locally who had the same kind of cancer. She referred me to American Cancer Society's Reach to Recovery program - a network of survivors helping survivors via phone calls, visits, goodies, etc. Kitty is now one of my closest friends - because she has been down this path a bit more than I have, she understands the "green gremlins" and can really help more than some of my other friends. In fact, she persuaded me to join the program and I am now helping 3 more sisters with this ucky disease. You might consider asking your local ACS office for a referral. Or send me a private message and I will be more than glad to take you under my wing
In any case, do stay connected with this group! The advice I have found here has been totally awesome! Such as the advice from Kristen - definitely get a notebook & write it all down - if nothing else, it makes for "fun" reading years later! Also, you might consider working out a "household treatment routine" and personal "help me through this" group of friends. Mine did things like helping hubby with housework & laundry (which I didn't entrust to him!), bringing & returning library books & DVD's for me (so I could minimize contact with outside world & germs!), etc.
Again, I'm sorry you had to find out you had this crap, and that you had to find out on a Friday afternoon ... but, you have found the right place to come for support!
Karen
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Bonnie, Kristen, and Karen,
Thank you so much for your words of encouragement and support. I have had this nasty disease for 4 days and can't believe how many people have offered up info/support/e-mail/phone calls. This has been the one shining moment in this whole darn thing.
I bought a journal as well as a binder/folder type thing to hold all my scans/labs/results/etc. I feel as though I have finally pulled my head out of the sand for the first time in days and am starting to take a little more control.
Anyone know much about MD Anderson?
Bonnie and Karen- I would love to talk to someone with IBC either via e-mail or phone. I will try and figure out how to IM you.
Thanks again, ladies!
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lorieg,
I have been off the boards for a while, but can answer most questions about MD Anderson. My wife is a patient there and we now live less than four blocks away. We are over there at least twice a week.
Check out www.ERASEibc.com to see about a radio call in IBC show Weds nite. Dr Christofanilli will be the guest answering questions about IBC. He is the Co head of the IBC clinic at MD Anderson and some say the world's leading expert. He is also a great person and my wife's doctor so I might be a little bias.
To all of you great ladies that have kept Cam in your prayers, thank you from the bottom of my heart. She is doing well, off Clinical Trials for a while and back on Gemzar and Carpo and Herceptin (she's triple negative but has Circulating Tumor cells that half of which express HER2. So this is some what of a new approach. Keep the prayers going, as we also pray for you.
Herbie
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Thanks so much, Herbie. I will keep Cam in my prayers.
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Lorieg~ I just sent you a PM with my contact info. Just look up at the top of this page & click on "Private Messages" I am praying for you as you meet with your oncologist today!
Herbie~ Thanks for the update on Cam.....keeping her in my prayers also!
Hugs,
Kristen
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Lori, So sorry you have had to join our ibc group. You will find lots of support and encouragement here.
Herbie, I am TN metastatic ibc and on a clinical trial with Gemzar and carbo. I get to cross over and receive the PARP inhibitor BSI-201 if I don't respond to the GC. Just started treatment and was hospitalized with high fever for three days. Next Gemzar is tomorrow. Hope I get to stay in the trial.
I know you and Cam only from your posts, but pray for you often.
Bette
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Bette,
I have been reading about your journey & just want you to know I am praying for you. You are such an inspiration to me. Your faith, courage, attitude & your motto "don't postpone joy" have touched my heart & encouraged me in many ways. Praying for you to be able to stay in the trial & no more complications!
Hugs,
Kristen
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Home from VA after GC treatment #2. One cycle down! Scans after cycle #2 to see if I cross over to the PARP arm.
God is good, and I trust in Him to take care of me.
Bette
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Hi Lori, I'm sorry you have to join us, but we are all here for you!!! I'll PM you with my contact info, I'd love to talk with you! Stay strong, hugs to you! Jessica
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Spent most of my weekend riding out Gem/Carb SE's, mostly aches and low grade fever. Tom has been wonderful running the household and caring for me. I am so blessed to have him.
This will be a travel week for us, with chemo at the clinical trial in VA, followed by a retreat for couples living with metastatic breast cancer near Baltimore. We are looking forward to the retreat, and I am praying that my SE's do not interfere.
I was dx with IBC last August. AT the time we did not know about the lung mets. But I have made it one full year now, and praise God for each day that we are given.
Bette
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