Need hopeful stories of survivors of Inflammatory Breast Cancer?

[davidlee]

My dear friend has it. I am just sick about it. One thing I could sure use right now is stories of people who have survived it. THis cancer is not the usual breast cancer. It ismuch more dangerous. SO stories about IBC only, Thanks in advance.

[davidlee]

Ooops nobody here to replay.

[Lolly]

Hi davidlee;

I have a friend who's had Her2+ Inflammatory BC since 2001, and she's been able to keep it under control with a combo of maintenance Herceptin plus various chemo's. Her latest chemo cocktail is Herceptin plus Navelbine, but in the past she's had Taxol, Taxotere, Abraxane, Gemzar and Tykerb and Xeloda. Usually our onc just has her on one chemo plus Herceptin, but with Tykerb he also had her take the daily Xeloda.
She's been able to take occasional short "breaks" of a couple of weeks, it she needs to travel or just rest up from side effects.
She's done very well so far, and has good quality of life. Able to drive and take care of her husband.

I hope this gives you and your friend some hope.

<3 Lolly

[sherri]

Hi Davidlee,

My dx was December 2004 with very aggressive IBC, I had dose dense ACT every 2 weeks for 3 month, then surgery and 25X radiation. Druing radiation I stared Herceptin for 1 year. I'm doing very well so far and hope to continue. Do you have the lab report of your freind? Most IBCs are HER2+ and with Herceptin the survival rate has increased. Please let me know if you have any question.

[pattyz]

Maybe you've read through the list by now, David.

If you're still looking for an 'encouraging' word:

I was dx'd with Inflammatory bc Jan. 2000. Coming up on eight yrs.

Inflammatory and Invasive. Two tumors in breast, 3.8cm / 1.9cm, 6+nodes of 26 taken. "Orange peel" effecting entire bottom half of breast up into nipple area.

Mets dx mid 2002. ER+ PR-Her2+++.

Navelbine/Herceptin for body mets successful, to this day.

Brain mets Sept. 2002. I've had two recurrances. A total of atleast 24 lesions, 16 treated successfully with focalized radiation sessions, no WBR. Living with active brain mets for just over two yrs. Treating with Xeloda/Temodar and now Tykerb.

No typos here, I dble checked!

I'm sure you don't like to hear about the mets diagnosis, but... I'm past that 'five yr' IBC survivor date by nearly three years... pass that on to your friend, please.

pattyz

[davidlee]

Prayer for her and prayer for me to be able to deal with it and for me to be the best friend to her that I can be are the best things I could ask of anyone.

[Aangelnxtc]

David, all i can say is what ever method of chemo they are giving her.
TEll her to make sure they are treating her brain/spine/cns also.
For some stupid reason they werent doing mine now i have brain mets (several) and moving thru CNS. So not good. Also ANY complaints like ie shakey hand, blurred vision, dizzness etccccc Tell her to demand a brain and spine scan. CAUSE ITS NOT IN THERE PROTOCOL. MMMMMMMM

Sorry sounding neg but she gotta stay on top. I slipped I trusted I was being takening care of. Someone forgot to put brain in the protection bracket.

I have 2 less breast, 15 less nodes but hey I have mmmmmm approx 9 tumors and cancer of the C N S.

SO IM PRAYING LIKE HELL FOR A CURE dxed 4/2/07 IBC dxed 11/29/07 OF BRAIN METS


ANGELA KEEP ON KEEPING ON

[sarah]

Sorry Angela you are having these problems.
I have a friend with IBC HER2 and wanted to know what you meant by " TEll her to make sure they are treating her brain/spine/cns also." what is the treatment? medicine or just tests?
thanks and win your battle.
hugs and love sarah

[davidlee]

Thanks for your all replies.

[nix0806]

I just wanted to let anyone with inflammatory breast cancer that I am still her - diagnosed fall 2003. Yes, numerous treatments from recurrences, but still going. New treatments are coming all the time. It's time to hang on and pray.

[ElaineM]

Count me in as a survivor. My 10th anniversary is coming up on January.

[drnix]

I'm still trying out how to work this site - so bear with me again. I posted a wrong date for diagnosis - said I was diax in 2003, when in fact it was 1993. I just want everyone to know there's hope. Stay in the game and continue to pray.

[Believe51]

Just look at my Sweet Husband's bio below, although he has had much happen since 2006, he is still here fighting. There was not much time in the beginning....6 months, 9 maximum. It is 27 months David and he is not done yet!!!

Sending special prayers for your friend to be inspired and to gather the strength to be the next one sending out a hopeful story. I know women who have beat IBC for 8-10 years. In the meantime new and exciting things happen in the breast cancer world. Best to you both!!>>Believe51

[juliet]

I am replying to david lee who wants hopeful stories of IBC. It will be 7 years from my diagnosis in another 2 weeks (December, 2001). I am cancer free! I had 3 chemos, radiation, Herceptin (on a trial back then, as it was only used for metastatic breat cancer). I had spread to the nodes (as I think we all have) and to my rib on the same side. So, I was technically stage 4, but my doctor listed my at 3C or I never would have gotten on the trial.
Yes, there are some of us whose cancer reacts well to the treatments. I was on tamoxifen for 2 years, now on Aromasin (an aromatase inhibitor) for five years (I have one year left). I feel great and am as active as I want to be.
Please feel free to write to me.

[Believe51]

Thanks for posting for David and all of us in general. Although hubby is still hanging in there his journey is tough and rather complicated. We too are in need of hearing inspiration like this. You go girl!!!!>>Believe51

[Naudia]

A friend of mine was recently diagnosed with inflammatory breast cancer. I am really proud of her since despite the seemingly grim outlook, she shows no fear and seems to be pretty confident that she will overcome it. It is her unshakable faith in God which keeps her going every day. She is a truly great person and I find her strength to be very inspiring. I was wondering if anyone has any experience with www.thomasmedical.com (http://www.thomasmedical.com)? What can you tell me about them? Thanks.

[Mtngrl]

One of the women in my breast cancer support group was diagnosed with inflammatory breast cancer 11 years ago, and was metastatic at diagnosis. She still has cancer, but her scans are stable, and she's still alive and kickin'. She is an inspiration to us all.

[Jackie07]

Happened to see in the signature of MidwestAlice today that she's a survivor of IBC:


04/08 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement <!-- / sig -->

[gumoore]

I was diagnosed 5 years ago, and I'm 51 months since surgery. I feel like a junior here compared to others, but it goes to show that we do and are surviving.

Stay strong.

[ElaineM]

Count me in this group. I was diagnosed in 1999.

[Candy Jacobson]

diagnosed with IBC in 2009
Finished adrimycin, cytoxin
Finished taxol and herceptin
Last Herceptin on January 14th. 2012
Looking to get into some her2nu positive trials.
Things are going great!Candy

[Unregistered]

Look up ElaineM - she is 13 yrs out from dx

[Midwest Alice]

4 years out. Still on Herception and I guess its working.

[Candy Jacobson]

I have been off of herceptin for quite awhile and am approching the 3 year mark from Inflammatory Breast Cancer. I think if they can treat it, which it sounds like they can, then you are going to beat this. Continue to hold on in faith, and don't ever give up. May God bless you. Candy

[MJsHusband]

I don't know what "survivor" means but MJ is approaching the 2-year mark with her IBC. She's been Stage 4 from the start and has had one recurrence but seems to be NED now. She will have PET/CT scans and MRI in September. We just got back from a nice vacation in Myrtle Beach and she continues to be busy with her work and going about her usual life.

[KDR]

Hi,
I just passed my two-year mark on 22 July, Stage 4 from the get go. Live in The Land of Yes!

Karen

[jacqueline1102]

Hi Greg,

I would encourage you to contact the Inflammatory Breast Cancer Research Foundation with this question. Ginny Mason, RN, BSN is the founder of this organization and an excellent resource. I subscribe to the newsletter which comes out monthly. Carol McWilliams is the editor of the newsletter and her email is carol_ibcrf@gmail.com. Lots of research going on and the Indiana University School of Medicine is stepping up. Lucky for me I live in Indianapolis. I may be off base in my assessment; I don't think there are many Inflammatory breast cancer women on this website just because for one IBC is rare. I have noticed, having observed from afar on an IBC discussion board, that there may be some IBC women who feel so alienated from other breast cancer patients that they may stay away from this site. Which is so sad for them, really, as I believe this website has been far more useful and the people far more helpful than the IBC website. Recent activity on the IBC discussion board facilitated my decision to withdraw from that site. To answer your question, my oncologist had me speak to someone he treated. She has/had IBC which had spread to her liver and brain. She is now 8 years out and is on maintenance drugs. She is ER/PR + so she takes the hormonals which gives her more treatment options. I think that was a huge thing in her favor. I have spoken with this patient twice and she is amazing. She worked fulltime during the whole ordeal with the exception of treatment for her brain. She just retired this spring from her job and is now taking care of her elderly mother. When diagnosed she was 57 years old. Her only complaint has been a 25 pound weight gain. Her philosophy was keep working, keeping attending church, and enjoy your family. Her quality of life has been great. Hope this helps. I think your wife's attitude of embracing her life is critical to her quality of life. My treatment team recently said to me that a predictor of longevity seems to be complex although they all agreed that having good health to begin with (other than that cancer thing) and the response to treatment are significant factors. Take care and glad you enjoyed your vacation!

[Delaney]

Jacqueline, What treatment did this lady have for the brain mets . I have never come accross anyone else who lived so long having had brain mets. Its so encouraging. Thank you for posting.

[jacqueline1102]

Hi Delaney,

I am not sure what procedure she actually had. I will have to call her. I know that there was just one spot and she was unable to work for a short time. What was also amazing about this is that her oncologist (the same one I have) psuhed to have his colleague from another hospital do the surgery because the one where she was treated did not have anyone on staff who could do the surgery. Her oncologist really went to bat for her. So, what was cool another surgeon at another hospital (not affiliated with the hospital that my oncologist worked for) did the surgery and was somehow able to get the insurance to pay.
You may want to look at other's profiles on her because I think Steph is someone who had brain mets and has quite the remarkable story.

Take care,

Jackie