Inflammatory Breast Cancer

Is there anyone on this site that has IBC.  It is a rare form of breast cancer and I am in my final round of chemo, waiting for surgery and would be interested in hearing from someone who has the same disease.

 

On 1/26/2009 betteanne wrote:

Is there anyone on this site that has IBC.  It is a rare form of breast cancer and I am in my final round of chemo, waiting for surgery and would be interested in hearing from someone who has the same disease.

I have IBC.  I was diagnosed in August 2007, had chemo from Sept 2007 to Feb 2008. I then had a mastectomy in April 2008 and 6-1/2 weeks of radiation starting in June 2008.  At this time, I am NED (no evidence of disease).

I'd be glad to try and answer any questions you may have.  You might also want to check out www.eraseibc.com and www.ibcsupport.org, two sites I've found to be very helpful during my journey.

 

On 1/26/2009 betteanne wrote:

Is there anyone on this site that has IBC.  It is a rare form of breast cancer and I am in my final round of chemo, waiting for surgery and would be interested in hearing from someone who has the same disease.

Hi betteanne,  I was diagnosed 11/5/08 with IBC.  This is week #12 and the final week of this round of chemo.  I begin the FEC series next week.  I am HER2 positive with a high Ki-67.  How are you doing? Have you stopped crying yet?  What are your side effects?  I knew what I had prior to seeing the OB/GYN for the first time-although he didn't know what it was.  I just had, what looked to be, a patch of eczema on my breast. I feel so alone in this...would love to hear back from you.

Hi, thanks for your email.  I am sorry it has taken me so long to reply.  I just got home from surgery....mastectomy...but wanted to let you know I got your email and will reply in the morning when I get up....seems to be my energy time of the day. 

Betty 

 

Hi again.  Your email says you were about to start your FEC's series?  what is that?  My diagnosis came on Sept 26, 2008...three days before my husband and I were to leave for three weeks in Greece and England.  Needless to say the three week vacation turned into three week nightmare of chemo, tests and depression.  Have I stopped  crying?  no.  I cry every morning and then I am good for the rest of the day  The chemo...the taxol part of it has left my hands and feet numb...which is the worst part of this whole thing.  The surgery was not horrible, but losing my breast was not easy.  This whole thing has just put me in a zone of denial. 

Did you have taxol during chemo?  Are you having surgery?

Betty 

 

 

 

 

Hi Betteanne,  So sorry about the vacation-what a bummer!  I have had a different treatment plan for my IBC.  12 weekly infusions of Abraxane (a protein bound form of Taxol).  The next step is the FEC series: 5FU (fluorouracil), Epirubicin and Cyclophosphamide.  This is most often used to stop breast cancer from coming back after surgery and radiation.  After the FEC, I'm in for the mastectomy and then more chemo and radiation.  And, like you, my tx began quickly-14 working days from the first dr. appt. I had my first chemo. My oncologist is very optimistic, saying we will cure me.  I don't have the optimism due to the lack of statistical information on the IBC prognosis.  But we know that what was new 2 years ago is out of date now.  My hands, feet and face tingle.  My hands look like they were boiled and I use burn gel to help with the pain.  I got mouth sores and was turned on to Magic Mouth Rinse in my support group.  Losing a breast doesn't phase me-I'd like both removed (for balance purpose!).  Hair loss did and does phase me.  Laryngitis, diarrhea, fatigue, runny nose (and no nose hair!)-I expected changes at menopause but not these!

Tell me about your treatment plan and stage.What area are you located in? And, very importantly, how supportive is your husband?  Mine is worthless....

Hi...your last line made me laugh out loud,.,,..yes my husband is worthless too...that is why i left him three years ago.  My new partner has been a godsend....i dont know what i would do without him.  He has not missed an appointment, a treatment,  He is my rock.  Our relationship is only a year old so I got very lucky...I am sure most men would have ran for the hills.  I hope you have close friends that support you or family.  Personally I am a bit of a loner...I tend to want to be alone with disaster happens so I havent seen many of my friends for sometime. 

Losing a breast doesnt bother me...the hair thing does.  I hate wigs and dont quite ;know what to do with myself when I go out.,  what do you do?   

My next step of treatment is radiation, in about four weeks, once the skin from the surgery totally heals.  I have never been told what ' stage' I am at.  The clinic I am at treats you as if you are going to live no matter what......which is a good and bad thing.....my first real diagnosis is coming next week when I meet again with my surgeon and she is going to tell me the good news/bad news.  I've read all the info and I have known from the start I could not survive....it really sucks.

You had some really awful side effects from chemo...gawd...I was pretty lucky..only tired ..but my hands and feet are killing me.  Did you say you put burn sauve on your hands?  Are they painful and numb...\?

Sorry this is turned into a long email....but it is nice to talk to someone who is going through the same thing.  Thanks for listening.   Betty 

 

 

Hi Betty,  You seem to be doing OK from surgery.  Did they take one or both off?  I don't mind the wigs.  I prefer to use the net cover for my head underneath.  I have three wigs I use at different times.  Two were provided by the Cancer Foundation and I had to take them to another town for a cut and style.  At night, driving home from work in the dark, I like to take off the wig, keeping a hat nearby for quick cover up!  Eventho your clinic is treating you as if you have a life ahead of you, you should be more informed of your treatment.  Staging is usually done at surgery, when the lymph nodes are counted at removal.  Did you lose any?  IBC is usually at stage IIIB to begin with due to the lymph nodes.  Stage IV if it has metastized to organs.  Like I said before, with all the new discoveries, who knows what our chances are?  Being HER-2 positive, my cancer can go to my brain very easily so I have to be prepared for that.  I'm making a will so my daughter will be taken care of-I know her dad,yes, my husband, wouldn't do it.  And I allowed myself to be manipulated and a doormat because I felt sorry for him and I'm paying for it now.  You are lucky to have someone supportive.  I don't feel the need to bring anyone to chemo with me-the premeds feel so wonderful I just like to doze-someone there would just be a disruption.  Those premeds are the best part of the chemo!  But I did find out that after years of neglect, my friends are still there and with me, love me and support me.  I had them before my husband and I will have them after my husband!  They call themselves "Penny's Angels, Out of Kick Cancer's Ass"!  Just remember, statistics for IBC just aren't good but they ARE getting better.  But I agree, IBC may not kill us this round but it might if it returns.  That's what is scary. 

Hello again....Pre-meds at chemo?  wow what are they for?  that would have been fun!  I mean I did have some meds beforehand but nothing that was any fun.  Mark, came with me to every chemo because actually it was just fun for us.  We had some of our best laughs sitting, waiting, sitting, waiting...it was sort of a forced time to have to talk and talk and talk.....it made us stronger and it helped him understand.  Before meeting him I wouldnt have dreamed of having someone with me for any of this stuff....I liked to do stuff on my own. 

I find out on Tuesday where I am at with the lymph nodes and stuff. I had one removed from under my arm and that has caused me the most pain...   I know I am HER-2 negative and hormone positive so I will be getting hormones for the next five years to try to keep it away.  I have been involved with a volunteer program of testing, PET scans and MIRS every three weeks.  IT is a pain in the ass but it gives me free access to these tests not available to everyone and tells me my cancer is still just in my breast.

I only had the one removed and like you I wish i had both.....I feel totally lopsided and dont mind being flat at all.  Always hated bras.  I am glad you have your friends....I've sort of left my behind for now....we keep in touch by email and I know they love me...in time I will get up and around again and resume my normal activiites...whatever hey used to be!!

Have you started radiation?  I think that is the next step isnt it?  I think mine starts in a few weeks or depending on the results tuesday maybe chemo.  What a life...lol

Betty

 

Hi Betty,

You were lucky with the tests.  My PET was nearly $5000.00.  So thankful I've had insurance but just got laid off from my job last night...I'm surprised you didn't have the pre-meds.  One day I just had trouble dealing with going through the chemo and asked for more of the anti anxiety drug and they gave it to me-rested very peacefully throughout the chemo!  Where are you located?  Your treatment is different, that's why I ask. 

Before your radiation begins, get together with the girlfriends.  Some people are just so tired and wiped out from the radiation they are bedridden. You won't want anything to do with them then.  I'm planning to start having mine around all the time-they all think it will be funny to see how my husband will react for they are all very outspoken! 

 I'm scheduled for breast and brain MRI's and a cardiac study before beginning the next round of chemo next week.  Surgery in about 4 months.  The accumulative effects of the 12 weeks of chemo I've just completed have become difficult to deal with.  I know I need to take better care of myself so I do welcome the lay off.  Just worry about the financial side...

Take care.  Penny