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

[Kavy]

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.

[Kavy]

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.

[Betty]

Hi Kavy, Roz & Sandy,
When I had my mastectomy, I mentioned to my surgical Dr. about doing a double one, but he & my Oncology Dr. didn't want to do that. I live in a rural area, plus I also worked in the hospital where I had my Mastectomy, so I know both Drs. pretty well. I don't think that they have had but 4-5 IBC patients, but my surgical Dr. did know what to do so far as doing the Chemo first & I trust & have confidence in him. He was the first one I went to when I realized that I had more than an infection. I have seen him at least every week since my surgery & sometimes 2x a week. I have fluid in my incision & he drained that out 2x this week.
Kavy, b/c your tumor was so big is probably why you received the radiation as well as the Chemo before surgery. They want to shrink the tumor as much as possible before surgery. I had a clear margin around the breast. No one said anything about extensive or superficial lymphatic invasion. I will be having Adriamycin & Cytoxan x 16 weeks once I heal. After that I will have the radiation & start Herceptin x 1 year at the same time.
Roz, It looks like your tumor was pretty large, too. Mine was 5-6 cm. After that first Chemo (before surgery) it had shrunk 50%. It sounds like the Herceptin is a good drug for this type of cancer.
There are a few things I have not told either Dr. & that is I am taking quiet a few alternative medicines, vitamins, herbs, Essiac, etc.
All of you keep in touch.
Betty

[Sandy H]

Its good to hear from you all! Wish it was under different circumstance!! March 2001 My tumor was 5.5 cm. with extensive lympovascular, dermis and epidermis invasion. I had 44 pos. nodes out of 45. I had adm/taxatere for 4 cycles. Double mastectomy (my choice because of high risk of it going into other breast as it is so aggressive, and it being a lymphathic disease) I was also told that clear margins not obtainable with IBC because it is a lymphatic disease. I only had 5 radiations because of skin mets from dermal invasion. Went back into chemo with Herceptin and Taxol for 3 months. Skin mets cleaned up nicely but we knew they would pop up again. Stayed on weekly Herceptin. Skin mets popped up 7 months later. Went on Navalbine for 6 weekly treatments did not work tried Xeloda for 2 cycles this did not work. Went back on Taxol and added carboplatin for 2 cycles (12 tx.) Skin mets gone again. It appeared that Taxol is my miracle drug. 4 months later skin mets again. Back on taxol and carboplatin still with the Herceptin for 2 cycles. 2 months later a spot on the scar line used Miltex from Germany and was able to keep stable for 10 months and now finishing up another round of Taxol without the carboplatin. Skin clearing up nicely again. Will be looking at other options as the neuropathy is catching up in my hands and feet. So this is what its been for me for the 4 1/2 years. I was told I had a very short time to live when I started out with this. Lots has changed with this disease and now its not a death threat like it was 4 1/2 years ago. It is treated as a chronic illness. As for the Herceptin we feel it has kept it out of my organs and bones. I do lots of supplements and self help for my immune system. Well wishes to you all. I am always happy to stay in touch with IBC'ers. hugs to all you strong people. Like a doctor told me once we IBC'ers are a different breed of cats!! I thought at the time that was rude but know I realize he is right. Sandy

[sherri]

Dear all,

I don't know if I had IBC or locally advanced BC, I think IBC . My onc never accepted to be IBC, but other Doctors called it IBC. In October 2005 I had a red spot on my left breast (like a mosquito bite) which started to grow. In December 2005 I had mam., which showed some calcifications, but Ultra sound showed several tumors, The biopsy showed Invasive Ductal Carcinoma, several tumors the biggest 2.1 cm high grade Intraductal Carcinoma, venous or lymphatic space invasion, multiple vessels involved including dermal lymphatics, pr- er- Her2 +++. I started chemo a week after, AC+ Taxotere for 6 cycles dose dence every 2 weeks, all the tumors were gone with chemo but skin was showings cancer cells. 10 days after the last chemo, I had a simple mastectomy, the result was clear margin, no evidence of residual invasive or in Situ Ductal Carcinoma, but extensive involvement residual intralymphatic high grade ductal carcinoma. After a month I started rads for 20 sessions. At the same time I started Herceptin every 3 weeks. I'm NED now and I hope it never comes back again.
I think if you have good result with chemo, surgery and radiation, stay away from more chemo. More does not mean better. I think the less drug we take, it's better for our bodies. I like to be in touch with all of you; we can learn so much from each others.
LiveStrong.

[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

[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 (http://www.ibcresearch.org) and www.ibcsupport.org (http://www.ibcsupport.org).

Hope you all see healthier days,

Edie

[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