2nd cancer age 39 IBC

kimmie39

2nd cancer age 39 IBC

kimmie39

Hi,

Im 39 yrs old and am battling my 2nd cancer (or maybe third?).

In 1995 ( i was 27) I had DCI 2nd stage. I underwent a lumpectomy, node removal, and rads. then 5 yrs tamoxaffen.

Now in April of 2007 I found some disturbing changes in my breast and went to several Doc's. After being told over and over it was nothing to worry about I was finally diagnosed Inflammatory Breast Cancer. IBC is VERY aggressive and quite rare and by the time I was diagnosed It had spread to both my underarms and clavicle nodes and bones. Its also in both breasts. My Doc says they are new cancers and  not recurrence of the 1995 cancer.

Ive been posting here on a chemo thread with a bunch of great gals. The problem is that they are now finishing up there treatments and going on with there lives ( I wish them ALL the BEST). But here I am STILL in treatment and have no idea when if ever Ill be NED.

So while they are getting hair and going back to work Im still in chemo and sick, sick,sick. And Im still looking for cures and advances in treatment.

Hope you don't mind if I stick myself in your thread for awhile. I'm feeling a bit lost.

Currently I'm on Taxol and Carbo awaiting my first appt. at M D Anderson. They Have a clinic dedicated to IBC.

Thanks for listening.

Hugs in Va

Kim 

Hope_M

Dear Kim,

I'm sorry that you are going through all of this.  We all take different paths, some move on from treatment and leave the boards.  Others must continue to fight and come to a new realization that this disease is not going to leave them alone.  It is really hard.  And often discouraging.  

I'm glad that you are getting to go to MD Anderson and I hope that they can help you.  IBC is a tough one.  I have an acquaintance (but she is much older) who has done very well at Duke.  I hope that you are as fortunate.

Best wishes,

Hope M. 

kimmie39

Thanks Hope -

Im glad your friend is doing so well .

I can hardly wait mto see Dr. C. at MDAnderson.

HUgs

KIm 

bks

I was diagnosed with IBC in Aug 06 so I know where you are coming from.  I finished with my treatments in June and in October a spread to my liver was found.  I was originally on Arimidex after surgery, but it didn't stop the liver lesion so I am now on Faslodex.  I am having a CT scan tomorrow morning so we'll see where I stand now.  I will be anxious to hear how it goes at MD Anderson.  When I was first diagnosed the IBC clinic didn't exist.  I think it opened several months later, but have often thought about getting a second opinion from them, but I thought they were only taking new patients.  Please post and let me know how things go.  I hear so many people talk about Dr. C. 

lemonpie

I was diagnosed with IDC in March of 2007. My treatment was at MDA and my onc is dr C... He is a wonderful caring doctor and as you probably know he is the head of the IBC  clinic.  You are in good hands. I wish you the best.

kimmie39

Havent heard from MD Anderson Yet.

Keep your fingers crossed.

Kim 

lemonpie

Call them again and again and again!!.....The only issue I have with MDA is scheduling.  Will keep my fingers crossed for you. 

Best wishes!

kimmie39

Hi,

M D Anderson Called!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My appointment is 1/23.

Now I need to find flights and hotels etc...  so excited.

KIm 

lemonpie

YEAHHHHHHH !!!  Be sure and ask the Hotel for the medical rate!  I usually stay at Springhill Suites (Marriott)  They are only minutes away from MDA and have a free shuttle.  Also the Rotary house is a very nice Hotel, which is for MDA patients and their family. It is attached to the hospital and has a shuttle which goes back and forth from the hotel to Hospital to the Breast Center.  You can even get your blood work done there which I like because it is usually pretty busy at he clinic...  If you have any questions or want to talk please dont hesitate.  Wishing you the BEST!!

Watson

Hi,

I see that someone already suggested the Rotary House.  When mymom was a patient at MDA, even though they lived in the Houston area, my mom and dad would spend the night there when she had treatments and / or tests.  Very convenient.  It's in the tunnel system and you can walk to your appt. without ever going outside.

Best of luck,

Watson

kimmie39

Thank you for all your advise and support.

Im going to try the Rotary house first then try others if I cant get in.

YEA YEA YEA YEA

HUgs in Va

Kim 

kimmie39

No luck with the rotary House. Im staying at the Homestead Inn. Wish me luck. It does have a kitchen so I can fix my own meals.

Talk to you later

kim 

lemonpie

Hi Kim,

I've stated at the Homestead Inn as well, they are 4 mins from the clinic and right across the street from Reliant Stadium and the light rail.   I actually just got thru with Radiation and stayed right next door to them at Archstone Medical Apts for 6 weeks.  Everything is very convient to the Medical Center.  Again Good Luck with everything I'm sure you will like Dr. C...he's great.

dash

Hi Kim--so sorry you're going through this. You sound like you have a great attitude even with the lost feelings!

I wanted to jump in here and tell you that I met a wonderful woman at last year's breast cancer conference in Washngton, DC--She is now retired and spends her time going to every conference and symposium on BC and highly involved in a BC support group near Philly. Anyhow, looking healthy and happy, she told us she is a 2 time survivor of IBC---the last bout was 20 some odd years ago. 

Rooting for you and praying the new doctors are ready and able to tackle this for you. 

Hugs, Holly 

Caseysmom

Kim:

I am so glad that you got an appointment at MD Anderson.  Good Luck on Jan. 23.

Keep us posted on how it goes.

Big Hugs

Laura

Erica3681

Kim,

I'm so glad you were able to get an appointment at MD Anderson. They will hopefully know the best treatments and how to give you the best quality of life while you're going through them. I'm so sorry you have to deal with this at such a young age.

Wishing you all the best. Please let us know how it goes.

Barbara