Officially diagnosed with IBC

I usually feel ill , tired and flu-like for two days after a treatment, then start improving from there. Some people can go right back to work; I am having to take time of, but that is just me. the nausea meds work great, no problem there. I also battle sore gums, a few days after, which make it hard to eat, so I am losing weight. Tonight is a sore gum night. 

 Bettte 

I have had IBC since the Spring of 2001...it was missed on a mammogram: not that it didn't show up -  the films were misread (as I was told later).  Went to a woman's clinic 4 months later with small pea-sized nodules that could be felt in the lower half of one breast.  I was told it wasn't cancer (due to the "free and clear" mammo), I was just getting old and lumpy; go home, drink decaf, take vitamin E.

That seems so long ago now.  I have not had rads or surgery, and I have refused chemo.  I am ER+/PR+, HER2- and am currently maintaining on Aromasin.

That's all I really hope for...to live with what I have and to maintain - I don't expect to be cured.  I don't have the energy to fight...sounds too much like being in a battle with my own body - and why would I want to do that?

That's how I deal w/ IBC: to maintain and do what I can do each day without too much emphasis on "survival".

Jadai...I'm not expereiencing any symptoms really - other than SE's from Aromasin: mainly joint and muscle pain and being very tired no matter how much sleep I get.   No swelling, no breast pain. 

I have blood drawn every time I see the Onc - every 6 months or so.  Other than the cancer markers being a bit high, everything else is in the "normal" range.  I haven't had a CT scan for about 2 years, nor have I had any other scans, x-rays, MRI's, etc.  I seem to be in a "holding pattern" and not getting any worse - but not really improving much either.  No meds other than Aromasin and generic pain relievers to take the edge off.

My best to your mother.

Yuyueno,

Thank you for the information and well wishes, thanks to all of you.  She is having her bone scan today and I am so afraid to hear the results.  I will keep you posted.   

Hi everyone;

First wow there is so much going on in everyones life here. I feel for each and everyone of you. I finshed my chemo on 9/4. Then I had my radical double mastectomy. They removed a 12.5 tumor. The chemo caused it to build a hard shell. The activity level has changed. It used to be a 6 and now it is a 2. I had 3 positive lymph nodes. I did get clear margins. Unfortunately I have to start chemo again. Every week for 3 months.  Taxol, carboplatin. Starting 10/30 I was devastated when I got the news. I am doing radiation along with chemo. I have 6 weeks of rads with weekends off. Starting 10/21. I have to go to physical therapy for my left arm. I broke my arm and shoulder last year. So they are recommending help with it cause of the damage that was already caused. The doctor told me that your arm can become stiff with radiation. Has anyone experienced that with radiation?

Lovemymum; I am glad to hear that your mother is enjoying chemo angels. It is a wonderful experience to know that people care out there and just want to help out. I am happy to hear that she is doing better. God is good!

Yuyueno: I  hear you about the doctors being educated on IBC. I had to go to the hospital cause of an infection. The nurse that took care of me in my room. She never heard of IBC.  She talked to 3 other nurses and they have not either. I run into people all the time who have never heard of it. It just breaks my heart. I wonder is it really as rare as it is, or do people just not know about it so they excuse it.

Bettelou: When I go into chemo I take some hard candy and ice chips. This is when the chemo takes an effect. This helps with the sores in your mouth before they even begin. Has your doctor prescribed you Miracle Wash. It is nasty but it really works. I hope your sores heal fast.

Please spread the word. I have been very discouraged to watch the programs this month and not once have they mentioned IBC. I hear about all the other cancers how to find a lump, but no one that tells you you can have cancer without a lump. My husband and girlfriend Tracy are having a day for BC. My husband is wearing his pins faithly through the month. He has one that says IBC. My daughter too. He has flyers going out to all the employees cause he called the coordinator and explained. My friend Tracy is having theirs on the 16th and I am going with her. She spoke to her coordinator and explained and they agreed to print the brochures and we can hand them out. Brochures: http://www.pink-link.org/files/ibc_trifold.pdf

Go to www.eraseibc.com  Then go to latest news. It mentions the Federal bill for IBC, Awareness action, Congress 2006, IBC proclaimnations, and Advocate News. Great information. I want to be an advocate for IBC. The word really needs to be spread to so many people and the medical community needs to be more aware of this.  We can make a difference.

Prayers & Blessings; Elizabeth

Hi Everyone,

Hope you are all doing well.  We FINALLY get to go to the doc tomorrow and discuss my mom's treatment plan!  Did you all do this? 

I too cannot believe the number of people who have not heard of this. I was talking with the surgeon the other day and he said that he has seen 4 cases of this already this month where in the past he might see two cases per year!  I have also read that this is becoming more common while your "typical" breast cancer numbers are decreasing. 

Also, for those of you going through or have gone through chemo what things can I do for my mom?  Will I need to stay with her for a few days after?  Are you able to drive?  Any info would be helpful, I am so lost here. 

Thanks everyone and keep fighting!!!

Hi Laura,

Thanks so much for the email.  We met with the Dr. today and we are more confused than ever.  She has basically told us that since there are bone mets my mom is stage IV and not cureable.  Her surgeon, however, thinks that he will be able to operate at some point and has set an appointment to see how things are progressing.  Oncologist doesn't think she should even do surgery.  I am so frusrated.  Any advice from anyone with stage IV would be so appreciated.  Thanks!

Jadai, Please check on the Recurrance and Mets forum just below the IBC forum.  There are many Ladies who are long term bone met survivors.  They can give you some suprisingly positive infor on bone mets. 

dindinha, apparently there has been no research on Graviola with humans. 

Question: Graviola: A Worthwhile Botanical Against Cancer?
I read about a South American herb called graviola, which supposedly boosts immunity and has anti-tumor properties. Are there any scientific studies supporting these claims?

Answer: I've seen Internet hype on graviola, which is being widely promoted as a cancer-fighting herb. Some Web sites claim that it is 10,000 times stronger than the chemotherapy drug Adriamycin, and that it is effective against prostate, lung, breast, colon and pancreatic cancers. None of this is true.

I asked Tieraona Low Dog, M.D., director of education at the Program in Integrative Medicine here at the University of Arizona, about graviola. Dr. Low Dog, an expert in botanical medicine, told me that it is the common name for Annona reticulata, also known as custard apple, a tree that grows in South America and the Caribbean islands and is prized by locals for its delicious fruit and medicinal properties. She explained that the unripe fruit is used traditionally to treat diarrhea and dysentery. The leaves are taken internally to eliminate worms and other parasites and are also applied topically for poorly healing wounds. The root bark is used to reduce fever.

The idea that graviola is an effective cancer fighter comes from research at Purdue University's School of Pharmacy and Pharmaceutical Sciences on the active components of the tree, unique substances known as annonaceous acetogenins. The Purdue investigators found them to be potent inhibitors of cancer cells while leaving normal cells alone. They also found the compounds to be effective against drug-resistant cancer cells.

But these were in vitro results - that is, the results of adding the annona derivatives to cancer cells growing in test tubes. This is a long way from clinical trials to determine the safety and efficacy of these compounds in people with cancer. In fact, I have found no human studies at all of graviola, for treatment of cancer or anything else. We do not even have basic safety data on graviola extracts. What's more, there is no way to tell whether commercially available graviola contains any of the compounds studied at Purdue. Indeed, the compounds used in the test tube studies didn't come from the custard apple tree at all, but from the leaves of annona glabra, a related tree that grows in Florida and produces a fruit called pond apple.

Dr. Low Dog says she wouldn't take or recommend graviola or its extracts as a dietary supplement. I agree.

Andrew Weil, M.D.  http://www.drweil.com/drw/u/QAA400299/graviola-a-worthwhile-botanical-against-cancer

And another view, this time from Sloan-Kettering:

Graviola - Clinical Summary

Derived from a tree in the rain forests of Africa, South America, and Southeast Asia. The bark, leaves, root, and fruits have been used as traditional remedies in many countries. Extracts of graviola have been shown to have antiviral ⁽¹⁾, antiparasitic, antirheumatic, astringent, emetic ⁽²⁾, antileishmanial and cytotoxic ⁽³⁾⁽⁴⁾ effects. Graviola has also been shown to be effective against multidrug resistant cancer cells line ⁽⁵⁾⁽⁴⁾. There are no large scale studies in humans on the effects of graviola. Alkaloids extracted from graviola may cause neuronal dysfunction and degeneration leading to symptoms reminiscent of Parkinson's Disease ⁽⁶⁾.   http://www.mskcc.org/mskcc/html/69245.cfm

Hey Folks... just thought I would pop in and give you an update on how my mum is doing....

She has completed her Chemo and the side effects are slowly fading away.... she had her Mastectomy on Wednesday this week, and what a walk in the park it is compaired to the Chemo... I was with her the entire day of  the op at the hospital, and saw her yesterday and strangely she looks better than she has done in months, it looks like a weight has been lifted, there is real relife on her face:)

So now we are motoring to the best word in the world.... REMISSION. By rights, she should now be cancer free and once the radio therapy is done she should be in remission... well fingers crossed anyway.

I dont know why but I'm swinging from relife to wanting to cry, and back again in minutes.... its most annoying

I hope you are all ok... love and positivity to you all x

lovemymum:

That's great news!!

Laura