Ibc

[Betty]

Has anyone had or has Inflammatory breast Cancer (IBC) that is HER-2-NEU positive? I wass diagnosed in April, 2005 with this. You get Chemo first, then surgery (had September 13, 2005). After healing, you get more Chemo & radiation.

[Sandy H]

Betty I was diagnosed with IBC March 2001. I am doing well with no organ or bone involvement. I do have skin mets on the chest wall but this is a chest wall and lymphathic disease and treated as a chronic illness. Meaning I am in and out of chemo. I will be happy to answer any questions you may have. I am always looking for IBC'ers as there are so few of us. Please feel free to e-mail me personally if you like. There are a few on the board here and you may hear from them as well. Hugs, Sandy

[Betty]

Hi Sandy
Glad you wrote.
When I had surgery, the Dr. said I had 4 out of 13 lymph nodes that were positive.
I took Taxotere 60 mg, Carboplatin 245 mg & Herceptin 140mg every week x 16 weeks with Herceptin only every 4th week, before I had surgery. After my incision heals, in Nov. I am to start on Adriamycin/Cytoxan x 16 weeks then Radiation x 6 weeks. I did very well with the first Chemo. but the next Chemo of A/C will be stronger & I don't know how I will tolerate that. Is this what you had, also? How did you do with the Chemo?
Betty

Hi, Betty
I also have IBC and I also was diagnosed in April 05. I had 6 rounds of Epirubicin, Citoxan and taxotere. Then I had double mastectomy, my choice. I wanted to have more chemo, but the doctor recomended radiation first. So I already had 3 radiation treatments out of 30. But I do believe that it's better to have more chemo after surgery first, then radiation. I tried to convince my doctor about that but he said I wanted to be the doctor. He is a total ....
I also have hers2+ and er/pr-. I had a 8cm tumor, and after surgery the tumor was gone, but I had still a lot of cancer cells around the breast, clear margin, and 1 node positive, and extensive lymphatic invasion, and superficial dermal lymphatic invasion. Did you have that too in your path report?
After radiation, I will have 2 1/2 months of weekly taxotere and herceptin, then herceptin for a year.
Please, e-mail me. I would like to talk more with you.
Karla.

Betty and Sandy H. My e-mail is dkbkvy@aol.com. Let's keep in touch.
karla.

[Roz]

Hi, I also have IBC. Dx6/03, had 3 doses EC, mastectomy and then another dose of EC. Then 27 radiations and then another 4 cycles of Taxol. I had a 7cm tumour and 12 out of 19 lymph nodes involved. Recurrence in Jan05, skin and lymph nodes with a pleural effusion (don't know whether there was any cancer cells involved or not) but good old Herceptin eliminated the effusion and reduced the Dx to NED. IBCers are often strongly positive Her2 because of the aggressive nature of the beast. Anyway, so far so good. Life is good.

[lu ann]

You need to let your dr. know what supplements you are taking as some don't mix with chemo and can cause you harm and possibly keep chemo from doing it's job. You would hate to take chemo and all it's side effects all for nothing. My dr. knows I take essiac and while she doesn't believe it can help, she said that it won't harm either. I know high levels of antioxidants should not be taken with certain chemos. Just be safe and not sorry. Blessings, Lu Ann.

[Sandy H]

Sherry what stage were you at diagnose? If you were stage 111b or if you had mets, and it doesn't sound as though you did, then you would be stage 4. A stage 111b is only IBC and no other kind of BC. If you were a 1,2 or 3A then it is not IBC. Perhaps, this will help you to know. Hugs, Sandy

[sherri]

Sandy,

Do you know what is the difference between IBC and Locally Advanced Breast Cancer?

[Kim in DC]

Hi Betty,

I was diagnosed with ibc in 8/2004 in my left breast. This was my second primary. I had regular breast cancer in my right. Both were Her2++++

I am taking the following suppliments (when I can remember)

Flax oil - to get the oleic acid
Beta Glucan- studies show it works synergisitically with Herceptin
Broccoli sprouts extract- it contains sulforaphane which studies show act like a mild taxane. You can get this, however, by eating broccoli, cauliflower, brussel sprouts or cabbage.
COQ10(sp?)- I am still taking Herceptin and it helps heart function


I had neoadjuvant Herceptin/taxotere and12 weeks of Herceptin/Navelbine after my mrm.
I have not had any mets to date. Currently I am on Herceptin alone. My onc and I decided that I will stay on it untill the 2 year hera trial data is released at ASCO

Km

[Betty]

Hi Kim
Do you take the flax oil with Cottage cheese? It works better with that. I tried the cc/fo for 2 weeks & I could not take it anymore. I now take the Companion Nutrients 2 capsules with each Tbsp flaxseed oil. I take 2 Tbsp oil daily but I really need to take 3 daily. I take COQ10 2 times daily. I also take Barley Green 10 tabs 2 times daily (to help pH). I take numerous more but I won't go into all of them unless you specifically want me to. The main thing with cancer (any cancer) is to eat a lot of raw dark green veggies & fruit, very little if any meats, & stay away from the sugar as sugar feeds cancer. All of this helps keep your body alkaline instead of acidic. Since I was dx. I have learned a lot about nutrition & cancer.
I will be on Herceptin for a year after I finish my treatments. It seems to be working well with the cancers in keeping it at bay.
Betty

[edie]

Hi all,

I have been a lurker here for a few weeks, but finally feel that I needed to register to talk to my sister IBC'ers. I'm curious if I did it correct, I'm not sure if my log in name is what I wanted. Anyways, I ramble.

I was diagnosed April 04 stage lllb, er/pr- her 2 +++, I had 4 A/C's dose dense, 1 Taxol and started herceptin at that time, had a reaction to the taxol the next week (a rash on my thighs), then started weekly taxotere with herceptin, after 3 weeks, we added carbo, had 3 carbo, taxotere, herceptin's every three weeks, then bilat mast's, 1 more carbo, taxotere, herceptin, then started herceptin every 3 weeks, after healing from surg started radiation had 35 rad's, finished herceptin on 6-17-05 and had my port removed last week (yes, I'm temptineg the fates), but I am NED and plan on staying that way! And hope some day you all are too!

I just thought I'd also pass on, there are 2 other IBC chat areas you may want to look at. www.ibcresearch.org and www.ibcsupport.org.

Hope you all see healthier days,

Edie