Just Diagnosed with IBC

Welcome and best of luck to you.  FYI ibcsupport.org is a very helpful resource with an active message board.

 Lori

Welcome to the group.  ibcsupport.org is another site that is totally for those with ibc.  I don't know what chemo you are on.  I was on taxtore, adriamyacin & cytoxin for 8 months, once every 3 weeks.  I used melatonin to help me sleep because I did not want to take sleeping pills and decradon if used, will keep you up (usually used a few days b/4 chemo).  I also took B6 & B12 to help with neuropathy (tingling and loss of sensation in fingers and toes).  It worked well.  I personally had to take Prilosec as chemo aggravated my 2cm gallstone.  I still take it.  The B vitamins may help a bit with the fatigue you will face with chemo.  I lost my hair around day 15 and it came back about 2 months after I completed chemo.

Best wishes to you on your treatment.

Terri

Akofc,

 My advice to you is that you request a copy of ALL of your records including scans, lab reports, pathology reports, etc.  Read them all, and educate yourself on this disease.  It is extremely aggressive, especially triple negative and her 2+ (which makes up most of IBC).  You need to be your own advocate or things can get missed.  I highly recommend ibcsupport.org as I mentioned previously for IBC specific questions.   I know not all people want to "know" everything about their disease so do what you want with my advice, but knowledge is power, IMO.

Triple negative disease is aggressive and can really only be treated with chemo.  The good news is that it generally responds well to chemo so if you have a good response to chemo and have little to no pathology left at the time of surgery your prognosis  is better.  If you can get a few years out without a recurrence than TN is less likely to recur than hormone+ disease.

Best of luck to you and hugs,

Lori

Mrs. Band, God Bless You, you are so kind!  Hugs to you and hope your further health issues improve.  

AKofC,

You can look under the forum entitled "Chemotherapy, Before, During, After," and find the group of women who just started their chemo in May, I believe it's named "Chemo May 2011," and there's always a big group of women who will jump in those for the month they started, and talk about all the ins and outs of their chemo irregardless of their diagnosis.  You will get so much support and many tips there.  I've been with the February bunch, I could not have made it without them, and I'm still doing chemo with nearly all of them.  I sometimes visit sites more specific to my difficulties and diagnosis, etc., but that is my main one. 

GG

I was  just diagnosed with IBC, I had CT bone scan and abdomen, chest. I am almost sure I have mts to bone because I could sleep for 3 nights bc of a pain in my back and  right shoulder. I did not start chemo yet and worry about it a lot. I find a new neck nodes every day, so scare. I try to find a right oncologist for me but I am still looking for. I had an appt. with one oncologist alreay and I want to start chemo with him, than I am going to see some doc from Sloan - Kettering Cancer  center in NY. I live CT. I am so scared about a have a lot of limf. nodes on the neck and probably bones and throat . I want to start chemo asap but my oncologist is waiting a full picture of me. How did you find you oncologyst? Please, give advise.

Hi Lori,

I don't see any recent post from you.  Hope you are doing well.  Just wanted you to know I was thinking of you. NJ 

Hey there,

I just was dx with IBC even though I have been in cancer treatment for a year. I was being treated for triple-neg. I had an "inflammatory recurrence" in Feb. Today I sought a second opinion and was told that my lymphedema is most likely IBC spread to the arm, and the positive nodes in my opposite side are likely IBC. So, today I had a brain MRI and the rest of the week will be other tests with a follow-up on Friday.

I am really upset that the other docs at a very reputable hospital did not treat this as IBC. I know my presentation was not typical, but there was another woman in this hospital today who had an experience very similar to mine. It seems that many docs are not familiar with IBC and its various ways of showing up. Many docs saw me without even mentioning IBC. 

It is frustrating that a cancer so toxic is not widely understood or considered when diagnosing.

Anyone who has had a similar experience and can advise me??? I am VERY dismayed right now.

SUSAN, even tho they didn't pick up on the IBC until after you'd been in treatment for a year, it might help you to know that if you received chemotherapy during that time, it will likely help that you had that done, as they give chemo to IBC people anyway.  That's not to say you won't get more.  I hope your tests provide you with SOME good news, like perhaps you have it but not in as many areas as they now think.

ANDREA, it is possible the pain you feel in your shoulder and back come from the IBC in your breast.  I remember mine hurt like the devil over the whole area, but CT scan showed no mets.  As for how you feel after chemo, I can tell you the pain I felt went away after the first treatment.  Some women do pretty well with chemo, they can for the most part continue with a lot of aspects of their lives, then others have some problems with side effects that can feel a lot like the flu, but you can count yourself as a sick person and just take your time and get under the covers.  One time I had to go off chemo for an extra week, and that week the chemo feelings went almost entirely away!  It was heaven and gave me hope.  You can get into the forum here "Chemo, Before, During, After" for the month when you begin it, and those girls will be in the dark just like you, even tho everyone will have diff types of cancers.