New to site... Nice to meetcha

I was diagnosed in 2008 in 2 months from the day the rash appeared.  At the time it seemed like forever but now I realized how quickly it was diagnosed.  I knew what I had from the moment it appeared thus I sought out treatment as quickly as possible. I thank God for my amazing breast specialist.  

It's hard to believe that it has been 4 years.  I had my fair share of problems because of treatment but none from cancer.  Just one for year until the magic window of 5, but I try to enjoy life as much as I am able.  I think survival rates are higher now because they catch it sooner.

IBC, 5 positive nodes.  4dd A/C, 8 taxol, 3.5 taxotere, 25 rads, 5 boots. I have neuropathy in hands & feet.  Rads damage scar line thus many infections.  Finally decided to do reconstuction.  Starting to feel more like my old self.  NJ 

Also keep in mind that all the stats out there for IBC are at least 5 years, and more likely 10 years or more, out of date.  Great strides have been made since, and those improvements are not yet reflected in survival statistics.  There are now 2 centers in the country SPECIFICALLY dedicated to IBC - Fox Chase in Philly and Morgan Welch at MD Anderson in Houston.

Hello DMlennon1,

I came across your post when reading something else on line.  I signed up to this board because I wanted to tell you that based on what you said I believe you are stage 3.  I was diagnosed 10.22.10 with bc that was later determined to be IBC.  I finished my chemo, surgery and twice daily radiation.  My last rad was 6/17/11.  I am TN.

I had cancer in my axillary, supraclavicular and the lymph nodes under my sternum and was staged a 3.  It really scared me to know the lymph nodes under my sternum and around my collar bone were cancerous but it all went away with chemo.  Currently and hopefully forever I will be NED!

There is HOPE.

In June of 2010 at the age of 57,  I started experiencing strange things in my right arm.  After visiting with my doctor that June, he confirmed my suspicion that I had a spider bite.  I was put on a regiment of antibiotics, sent home and told to come back to the doctor in 10 days. The 10 days came and went, the swelling did not go down, I was then sent for tests for Lupus, Fibromyalgia, Rheumatoid Arthritis. All of these tests came back negative.   These tests took from June through September, 2010.   Over the next few weeks my breast started to grow in size, it became black and blue, the pain was now excruciating. I started my research on the Internet and found the Inflammatory Breast Cancer link on the National Institute of Cancer site. As I scrolled through I found a picture of "Peau L'Orange".  I yelled for my husband to come and see this page, and I said, very sadly:  "this is what I have". I was devastated!  The very next day I called my doctor who asked me to come in and I showed him the printout and said this is what I have.   He immediately told me not to jump to any conclusions.  There are very many infections that mimic these effects. He had me walk over to a surgeon who did a biopsy of my lymph nodes and my breast.  It was Monday. All week we waited for the results to come back. Friday, September 17, 2010 @ 4:45pm the call came through.   The lymph node biopsy was positive for cancer.  It was my husband's 41st birthday.  The next day was our anniversary.  I spent the day doing as much research as I could on IBC. There wasn't much. Data indicated that 2-3% of all breast cancer is inflammatory.  I came upon the site for Cancer Treatment Centers of America.  Further research indicated that IBC is typically diagnosed at Stage III until all scans are done.  CTCA had a person online ready to chat with me. I explained what was happening, she called me and we spoke on the phone. She said she could  arrange for me to have a tour of the facility the very next day which was Sunday. I agreed and went and toured the facility. It is impressive. You have your entire team in one location. Your results take minutes for lab work or a few hours for the kore comprehensive tests, I.e. pet Scans; and you have all of the necessary services in what looks like a hotel rather than a hospital. 



Monday the call comes in that my breast biopsy has come back positive for IBC. I go back to my doctor's office and ask for next steps. The surgeon said they would refer me to an Oncologist. I stopped, thought about my weekend, thanked him and told him that I would take charge of my healthcare from this point forward.  We got in the car and I called CTCA and set up my first appointment. They had me come in immediately. 



I had scans, MRI, lab work. It was like a whirlwind of activity that week. I got my first cycle of chemotherapy the following Wednesday. The treatment plan was aggressive chemo, I was Stage IV and no surgery in the immediate future was being recommended. My tumor markers began at 643. Within 6 months the markers were 114. I was excited, the chemo was working. There was a caveat. Under FDA regulations, there are certain chemos which you can only have a couple of times because of the side effects which would kill you. That sounds funny I know  The chemo I was on causes congestive heart failure. I had my 2 doses of that and while effective, we had to move on to other chemos. 



Today, my tumor markers are at 925.  It's been 18 months of intensive chemo, plus I've had spreading to my brain, right hip, kidney, liver, tailbone, lymph nodes between the lungs and my left eye. I'm still fighting the fight. I start a new cycle of radiation and chemo tomorrow, in the hopes of reducing these tumors.  My lymph nodes are so painful in my right arm that I am also starting Cold Laser treatments to my right arm in the hopes of regaining its use. 



Nice to meet you all.



God bless.

It's actually Her negative. That was a typo in iPad. Sorry

Thanks Mice!! I like that name lol.



I didn't want to give the wrong impression. While I've had spreading, the only active at this time is my lymph nodes. I know that's the spreading factor, but I'm actually doing really good. I'm enjoying every day. I wanted to give a synopsis of my case for the purposes of introducing myself. It's not all doom and gloom, so put that smile back on your face.





I'll follow up on this.



Hugs.

So glad to hear you're enjoying life, She!  I felt and feel the same way - to me, there is a world of benefit in being easily amused.  

By the way, I wasn't recommending Dr. C as a 'desperate' measure or anything of the sort...I really think (know) that anyone with IBC that is either recurring or not getting optimal results with treatment should confer with Dr. Cristofanelli or at least one of the 4 (?) IBC clinics that exist now.  I know several folks on the IBC group I belong to whose treatment plans were not doing as much as needed, and those plans have been reviewed and modified by Dr. C with success.  The important thing is that your doc will network freely and have no ego about decisions past or present.  

I do have the chemo brain still goin' on a bit....if I didn't mention it before, if you're on Facebook let me know and I'll send you an invitation to a great group.  I find them comforting because we don't get all the panicky "omg do I have IBC" posts that usually dominate this forum, and all the top news in the IBC world is right there.  And, it's not anonymous (but is a closed, private group) therefore folks are not so spiky and easily offended.  Plus it's kinda amazing to be in a place with more than 100 folks with IBC...NOT an easy thing to find!  

I read this forum, and check new posts as they pop up. I don't reply to every one of the new threads, or bumped up threads...

Women like Bonnie are amazing. They support women wondering about it all, they answer questions as best they can. They do their best to reassure people coming here. Newbies, or those who are not so new to this.

When I read your post... I will admit I actually first went... WTF! I will admit I took it the same way... And then I read Bonnie's reply and thought. EXACTLY!

With that said I will agree that occasionally there is a bit of prickly nature that comes out in some posts as well.

I think both posts were taken in that way... And it took me a bit to not take yours the way it came across at first anonymice. To be honest this post pulled the edge off the first and explained it better.

I think at the end of the day both of you are bang on in your own way. 

Personally I refrain from posting about what is going on in my body outside of my thread in the Lymphedema section of all places because at the end of the day I don't want someone coming along 6 months later, or 3 years later... and reading what I am going through and either panicing or worse... Blowing off something important if I turn out to be one of the lucky ones.

Goodness knows I have read more then half of all the threads in this section now *blush* (and the ILC section) and the number of times I wished for follow up. I would even check the posters posting history to see if they ever came back. The hardest part is not to see how many ask questions or are worried. The hardest part for someone like me who is struggling to figure it all out... Is when I find out that someone didn't get answers soon enough, and progressed too far, and just isn't ever going to be able to post again.

With that said I am very glad this section is welcoming to those not sure of what is going on because one of the women I am most fond of and whom I will have a lasting friendship and relationship with posted, and her post got me registering. Mainly because her thoughts, feelings and concerns were echoed in my head and heart.

I am glad there are more and more resources on IBC but I will say that a private group may keep things from being over whelmed yet... At the end of the day if it is private there is no way to know it exists so I am glad this forum is as open as it is.

I hope this rambling post makes sense.

Shell

Bonnie as long as I am not the only one giggling it is all good hun... That said I read a lot but only stick to a few threads for posting so I get it.

(((Big, gentle hugs for Bonnie)))

P.S. I love that movie. I had tears in my eyes when she said that to the little girl.