Priscilla's IBC Blog

Think before you Pink

2009-10-14T08:45:00.004-04:00

Another great site to look at. All I am asking is that we think.

http://bcaction.org/

Pink - are we blinded by it?

2009-10-14T07:54:00.006-04:00

I just finished reading this article in the St. Petersburg Times. It says everything that I have thought but have felt like a traitor saying. It asks questions that all of us need to ask. Just because a product is pink, a party is pink, a fund raiser is pink, it does not mean anything. We all need to be educated consumers. Especially in this day and age. Our money, our time, our emotions are to precious. There are too many organizations out there waiting in the wings to pray on us. We all want to do something to help. We just have to find the right way. I think maybe we need to put faces on causes. Instead of supporting organizations maybe we donate time, money directly to someone in need through our local hospitals, church or schools. Maybe we research a specific team that looks into the cause of cancer, or one that looks into your particular type of cancer. We have a beautiful thing - this internet. We need to use it to research how and what we want to support instead of blindly following the pink road. http://http://www.tampabay.com/opinion/columns/think-pink-hold-on/1040821

Miami Breast Cancer Conference

2009-06-09T13:48:00.003-04:00

Here is some recent information about Inflammatory breast cancer found in CURE Magazine. There is hope. We are not being forgotten. The medical field is still trying to figure us out. They are making great strides.

INFORMATION FROM CURE MAGAZINE
June 2009
Miami Breast Cancer Conference

Treatment Updates From the Miami Breast Cancer Conference
BY DEBU TRIPATHY, MD

New Insights Into Inflammatory Breast Cancer
Inflammatory breast cancer is responsible for about 1 to 5 percent of all new breast cancer diagnoses in the United States and is more common in younger and African-American women. It has an aggressive behavior, and in the past was associated with a 90 to 95 percent mortality rate, which has improved significantly with the use of chemotherapy and biological therapy, including Herceptin (trastuzumab) for HER2-positive breast cancers, followed by surgery and radiation, with about 40 percent of patients now surviving.
IBC cells tend to have a higher grade and are more likely to be negative for hormone receptors and positive for HER2 protein overexpression—all markers of higher risk. It has recently been suggested from gene profiling studies that IBC and non-IBC are distinct biologic entities and may have differences in signaling pathways and angiogenesis, the formation of blood vessels to the tumor. There are specific proteins that give IBC a tendency to hone in on blood vessels in the skin, a feature that gives IBC its name owing to the redness and swelling in the skin over the breast. Clinical trials using newer HER2-targeting therapies, such as Tykerb (lapatinib) for HER2-positive IBC or the antiangiogenic agent Avastin (bevacizumab), show promising results with response rates higher than seen with conventional therapies.
The discovery of unique pathways, in addition to those driven by HER2 overexpression, has revealed many new targets for future trials. In addition, imaging tests such as MRI (magnetic resonance imaging) and PET (positron emission tomography) scans may be valuable tools to assess early response and to compare different drugs being evaluated in clinical trials. There is still much room for improvement in the early detection and better tailored treatment for this unusual variant of breast cancer.

Army of Women & the Sister Study

2008-11-17T14:29:00.003-05:00

I just signed up for the Army of Women with Dr. Susan Love. The article that I pasted below was from that site. I would suggest that every woman sign on to this site. You don't have to do anything but put your contact information up. You will get information sporadically about studies that you might want to participate in. You are not obligated to do anything but be informed. http://www.armyofwomen.org/
I am thankful to all of the women, including one of my sisters, who are all ready participating in the Sister Study.

The Success of the Sister Study
Posted by Dr. Susan Love at 12:23 pm
We did it! I always thought that an Army of Women would step up to the plate, but this week we proved it.
The first “Call to Action” was sent out on Tuesday, October 28, and the response was incredible.The Sister Study has been recruiting sisters of women who have had breast cancer since it was started in 2002. Their goal is to recruit 50,000 diverse women from all walks of life. They told us that they needed to recruit just 5000 more women, and that they specifically needed African American women, Latinas, and white women with only a high school education.We knew that a number of the women who had enrolled in the Army of Women would not fit that description. But the amazing news is that over 2200 of you not only did fit the description, but signed up for the Sister Study within 24 hours! The scientists running the Sister Study were ecstatic—and so are we.No matter what type of research you are doing, one thing stays the same: The faster you recruit the people you need, the faster you figure out the answers. If you know anyone that fits the description the Sister Study researchers need, please, please, please send them to the Army of Women!
There are now more than 240,000 women in the Army of Women. I would love to hit 300,000 before the end of the month. So get to work recruiting! And stay tuned for our second Call to Action!
Thanks!Susan Love

BUT I AM ALIVE

2008-06-04T10:54:00.005-04:00

I have been asked to submit an essay for a book publication. I am honored that I would be asked to do this and I take the responsibility very seriously. This book, as i understand it, is being created by two people who I have great respect for. One is top doctor in the field of I.B.C. and the other is a mother of a victim of I.B.C.

The article is supposed to be a type of diary of what happened to me on my road to becoming a survivor of this disease. So, while I write for them I will write for my blog.

BUT I AM ALIVE

Today before I put on my bright colored blouse and big bold earrings I think I look like a boy. My hair has grown in baby fine & sparse and the only solution seems to be to keep it cut short short short like a boy’s. My body matches my boy’s hair cut as I had a bi-lateral mastectomy without reconstruction. “BUT I AM ALIVE” and that is my mantra.

On August 15, 2005 I was diagnosed with Inflammatory Breast Cancer. The diagnosis of “Inflammatory Breast Cancer” was never spoken out loud to me though she told me that I had breast cancer and wrote Inflammatory Breast Cancer on my chart. She took a picture of my breasts so that she could show her students something that was so rare they would probably never see it in their careers. She took punch biopsies of my skin while I tried to comprehend what was happening to me. She lined up an appointment with the earliest available oncologist. She set up appointments for CT scans, heart scans, bone scans and blood tests. She handed me the standard breast cancer handbook. She told me it would be best to cancel our much anticipated Alaskan Cruise so that I could get into treatment as soon as possible. I was numb. How could this be my reality?
It had all happened so atypically. I did have a lump but it had grown overnight. I swear I hadn’t felt it before. I had a mammogram a few years earlier and nothing had shown up on that. Breast cancer is supposed to grow slowly. Where were my warnings? Where was my chance to have caught it early? I had blown that opportunity.

The first sign that something was wrong came on July 18, 2005. I had been sketching all evening. We stopped to enjoy a glass of wine and the evening breezes. My right breast began to ache. By the time I was ready to retire my breast had turned red. It was hot and it was swollen. By 3am I had developed hives. My husband drove me to the emergency room. I was diagnosed with “acute allergic urticaria and right breast cellulitis” - No Lump. I was given Keflex and Benadryl and told to see my primary doctor if the symptoms didn’t subside.

On July 20, 2005 I saw my primary physician. She examined me – No Lump. She prescribed another round of antibiotics using Doxycycline and tested me for Lyme disease.

On August 5, 2005 I returned to the Dr.’s office. My right breast still achy, heavy, red and warm but now I felt a lump. She felt the lump and then she felt another lump. She ordered a mammogram but not with any sense of urgency. We still did not fear that this would ever be diagnosed as breast cancer. This was way too odd to be breast cancer.

On August 12, 2005 I had an ultra sound, then a mammogram, and then a biopsy. I proceeded to enjoy the weekend knowing that on Monday I would be seeing a breast surgeon for my results. I was confidant that there would be an explanation for my crazy symptoms and that explanation would not be a diagnosis of breast cancer.

So, on August 15, 2005 when my husband and I prodded my doctor to explain what was going on with me, we were both stunned. After we left the office I poured over my new book trying to make sense of what had just happened to me. I learned about Staging of Cancer. I learned all about the prognosis for each Stage. By a process of connecting the dots I realized that I was not in Stage I or Stage II. I realized that there was a monster out there with the name of Inflammatory Breast Cancer and that I probably had it. I was shocked when I read the book and found lonely 4 sentences in the entire book that talked about IBC.

This time when I planned for my next doctor’s apt. I did not do it with a light heart instead I anticipated that there would be no options for me. I would probably be left to die. The skin biopsies came back negative. I clung to what the doctor said. “Even if it is not pathologically IBC you still have a 6cm tumor that is Her 2 + both of these diagnosis are treated the same”. To me that meant I didn’t have IBC. It wasn’t proven pathologically. I was still Stage IIIb but not IBC. I wasn’t an IBC patient. My odds for beating this disease weren’t as bad. If the truth be told I never accepted the IBC diagnosis until well after treatment ended.

Now I am 3 years away from that date and I will always remember it– like I remember the dates my children were born. Those dates are etched in my mind. Those feelings will never be forgotten. I realize now how absolutely lucky I am to be here today. I am lucky that I developed a lump because I don’t think anyone that I saw would have ever put my symptoms together with a Breast Cancer diagnosis. I would not have pursued the cause of my red, swollen and warm breast. It was just too odd to be Breast Cancer. It had to be something else. I am one of the lucky ones. My IBC was caught “early”.

During my treatments I read an obituary of a young educated woman who was diagnosed just 2 weeks before she died. She lived in an area with access to great medical facilities. She lived in Boston where these symptoms are still not recognized. I now pass out warning pamphlets to other women and to their doctors. These symptoms can’t be ignored. Breast Cancer is more than just a lump. Mammograms are not the defining test. Women have to know that any change to their breasts is not insignificant. I also try to give reassurances to other newly diagnosed women that there is a future for us.

Yes, today I might look like a boy but I put on my colorful blouse and big bold earrings and I chant my mantra – “BUT I AM ALIVE”.

COSMETIC INGREDIENTS CAUSING CANCER?? BUYER BEWARE

2008-05-13T13:47:00.004-04:00

Hi All. I just saw a segment on a news program that was very unsettling to me regarding something we all use on a daily basis - cosmetics. Did you know that the European countries have banned many of the ingredients still being used in the cosmetics made and sold in the U.S.A.? These ingredients are listed under the name of "fragrances". Our good old F.D.A never ceases to amaze me. Their protection of the tobacco industry has always infuriated me but now to find out that we have been victims of our trust once again. I just assumed that I could trust that something that was on the shelf was safe to use. Wrong again. Anyway - there is a site where you can check out the products that you all use everyday. http://www.skindeep.com/. This site also has a form that you can submit to your reps so that they will become aware of the fact that no one is watching what is going into what we use every day. When I got the diagnosis of Breast Cancer I started to obsess about what I did that could have brought this on and how I could have taken steps to have prevented it. The reality is that the FDA could have maybe prevented my breast cancer. They should be protecting all of us if that is their primary objective the way European countries protect their citizens. Please feel free to forward this on to as many people as you can. Please look into purchasing only cosmetics that are marked organic or natural. Please check out the above website to see if what you are using could be putting you in danger of getting cancer. Now, I did some research myself. Heaven forbid I trust even a news program. I think the bottom line is buyer beware. No one is watching these products for us. http://www.webmd.com/skin-beauty/features/cosmetics-safety-whats-in-your-makeup-bag is a link to a great article giving both the pros and cons of my warning to all of you. The following is taken from that site. Steps You Can Take To protect yourself, experts who spoke to WebMD offer the following tips for safer cosmetic and personal care use.
When choosing personal care products, remember that simpler is better. This means not only looking for products with fewer chemical ingredients (soap instead of shower gel, or moisturizers without fragrance), but also using fewer products overall.
Think about how necessary a product is before you use it. For example, bubble bath for your baby or for yourself. Do without if you can.
Use your nose as a guide: If a product has a chemical-like odor, think twice about using it or where you will apply it.
Read ingredient labels for ingredients like parabens, but realize that many of the most questionable chemicals (like phthalates) won't be listed; instead, they're contained in the umbrella phrase "fragrance."
Visit product web sites to get more detail on ingredients. Many of them will offer more disclosure than the label does. If you still want to know more, email the company.
Visit www.CosmeticsDataBase.com for an up-to-date cross-reference of more than 22,000 cosmetics and a rating of their chemical ingredients.
Seek out products from companies that have signed the Compact for Safe Cosmetics pledge. Visit www.safecosmetics.org/companies/signers.cfm.
Get the free CD report from Vassar College on environmental links to breast cancer, including the role of cosmetics and personal care products, at www.ERBC.Vassar.edu.

Another check up behind me

2008-05-09T18:26:00.004-04:00

I haven't written in quite awhile. Thought I should update today. I had my 6 month check-up today. A review of blood work, ct scan, as well as a physical exam all proved that I am alive and well and good to go un-tethered to the medical community for another 3 months. I feel good! I have been dealing with a horrible rash and hives for about a month now - kind of brought back memories of when I was first diagnosed. I am relieved to know that it is just my crazy body being hyper sensitive.

Lifetime finally airs "Top This Party" episode

2008-02-09T13:01:00.000-05:00

The Emerald Dream Ball in all it's glory was aired on Lifetime last night. For all those lucky (?) enough to have seen it, I apologize to you. I will not comment further on it except to say that good did come from the event. 13 wonderful women connected for the first time and not for the last time. I feel confident that good will come from that. Good publicity was generated for many of the women and they were then able to promote their causes and from what people have told me prayers were said for Lana throughout the shows airing.

Now, that having been said I must give an update on my situation. I met with my oncologist for my 3 month check up last week. I am still in remission!!! Yeah for us. I met another mile stone on my path to recovery - 2 years have passed since my surgery. Every 2 year mile stone is huge for me. The only 2 year mile stone left for me to achieve is off in the distance - 10/4/08. That is the anniversary of my last treatment for cancer.

Got the breast cancer - when do I get the wisdom?

2008-01-11T00:07:00.000-05:00

People have said that when they became a breast cancer survivor they gained a new perspective on life. That they became wiser. That they learned to appreciate every day more than they ever did before. That they shunned the negative and turned to the positive. I wish I could say the same. I try. I seem to get stuck. I want to move away but it's like I am drawn to fixing, understanding and trying to control the uncontrolable. So much happened between Christmas and today. The trip was wonderful. I loved it. I guess at this point in my life though I'm not looking for bells and whistles though. I'm looking for family and friends. I'm looking for beautiful sunsets and walks in nature. I'm not looking to be impressed or to impress. I'm looking to make a difference in a world that is so fragile for me. I don't know how many days or years I will have. No one knows that. I just know that I want every day to have meaning. I don't need to be entertained with caviar and champagne - even though that was very nice. I would rather engage in conversation with family, & friends, both old and new friends, over tea and cookies. I'm simple. I've done fancy in my lifetime and it was fun and exciting. I would never fault anyone for wanting that. I just don't need it right now.

Back from the Emerald Dream Ball

2008-01-09T19:35:00.000-05:00

It's all over now. Put 13 Breast Cancer Survivors in Las Vegas for a week and make that week end with New Year's Eve and begin the day after Christmas and you could never predict what the outcome would be. There were good times. There were bad times. I have to believe that Lana and all of her staff had to have been pushed to their max! They tried to pull off the impossible. An over the top New Year's Eve party that was to be televised for Lifetime TV, coupled with the launching of a clothing line, topped off with trying to keep 13 women from all over the U.S.A. happy would be enough to push anyone over the edge. All of us had different expectations for the week. I went hoping that I would get professional designer help discovering a new fashion style that would suit my new body. Others went thinking that they would get hair extensions that would make them feel better about themselves. I also expected to decompress - don't ask me why i expected to do that in Las Vegas. I think I saw the words pamper and spa and assumed that it would be a relaxing experience. Silly me. Las Vegas by it's very nature is anything but relaxing. We were met at the airport with our names printed on an official Emerald Ball Logo held by our drivers. We met Bill, our videographer, and then we met our volunteer greeter. Such a v.i.p welcome. From there we began our whirlwind week. We did fittings at Lana's Studio. We practised runway walking. We got our faces treated to treatments, our hair cut and styled. We saw shows. We were hosted at Lana and Victor's house for a day of beauty, glamour shots and interviews. We even got a demonstration on how to hustle pool by "Fast Eddy". We ended the week with an as promised over the top New Year's Eve party. Were all our expectations met? - no. Did I get my rest, relaxation or personal help with my wardrobe?- no. Did others get hair extensions - no - but not for lack of trying. Did I get more than I ever hoped for? yes. I came away from the week so much richer for having met the other 12 women that were chosen and their partners. I came away exhausted and run down from trying to keep up with the chaos that ensued from trying to accomplish as much as was set out for us but I know that I will recover. My one real regret is that Lana was so busy trying to accomplish all that she set out on her plate that she didn't get to meet us or for us to really get to know her. I think that that is the real tragedy. I think we all could have grown from that experience.

6 More Sleeps Till We Leave For The Emerald Dream Ball

2007-12-20T11:24:00.001-05:00

When my kids were little they had a hard time comprehending how long a week was. They couldn't understand waiting for Christmas or their Birthdays. So we devised a sleep plan. Everything was measured in how many sleeps till the big day. Often, even now they will refer to this measure of time. Well, now it's my turn to use the system. I am so excited about all that is to come. Yesterday I was surprised when I arrive home and found a huge box on my front steps. I was astonished to open it up and to see a wonderful coat. An Isis Couture coat. It fit me to a T. Along with that was a wonderful bag and inside the bag were 2 outfits (Lana Fuchs couture) "bum suits". I have to admit that I think I am a little too plump to do these outfits justice but they are both so different and beautiful. Such fun. I have been in touch with one of the other winners. I think our excitement is serving to fuel even more excitement within each other.

Count down to the Emeral Dream Ball Trip - 9 days till we leave

2007-12-17T15:14:00.001-05:00

Well, it's a Monday in Boston. We are digging out from yet another snow storm. The living has not been easy here. Last week we had a horrible fire just a block away. We count our blessings every moment now. Life as we know it is so fragile. All that we know can change in a heart beat. Whether it is a diagnosis or a fire or an accident walking or riding through a snow storm.
So, today the sun is out. I count my blessing as I sit and wait for a few more tidbits regarding a wonderful trip to Vegas. Today was the day that I expected to receive more information -- maybe tomorrow. No matter - life is good.

Lucky 12

2007-12-13T17:22:00.000-05:00

The information is starting to trickle in. We have received our airline itinerary. We have gotten the news of where we will be staying. We had to send in an additional picture of ourselves. Something about this picture being part of an additional surprise?? We have gotten the news that our partners will have to get their tux orders in to Vegas - the New Year's party town. Men's Warehouse was the way we went. They have stores here and just a 1/2 mile from the hotel in Vegas. I'm still on the edge of my seat waiting to get our agenda for the week.
Just heard from one of the other "lucky 12". How fun!! Can't wait to meet everyone that was chosen. If any of the 12 would like to set up some e-mail communication - please do so.

emerald dream - will I ever sleep again?

2007-12-02T09:43:00.000-05:00

I am back from a little Thanksgiving vacation to my son and daughter-in-law's house. We had a wonderful time with them. While I was there I had my measurements taken and a photo taken. Both were sent on to the Emerald Dream Team. I still can not believe that I am actually going. During the day I can go about my business but at night my head begins to swirl with all that I have read about that is in store for us. I will update this blog as I get more information. I am excited to be able to share this experience with everyone.
Meanwhile I must concentrate on the business at hand. I received my packet from the IBC Research Foundation. Once I concentrate long enough to complete this packet it will allow me to become part of the bio bank. This is (as I understand it) a bank of information/ tissue samples/ lab results etc. that is accessible to researchers who wish to study IBC. I believe that participating in this is one way in which I can make a difference. I know it won't be a simple process but nothing worthwhile is simple. I would like to encourage anyone who is reading this to consider looking into this. It is not just for women with IBC. The researchers need comparison information also. As i understand it this is a one of a kind bank. By making this information readily available to researchers it encourages research. www.ibcresearch.org

Emerald Dream Ball

2007-11-23T11:28:00.000-05:00

Yes, it is still true. I woke up this morning and had to re-convince myself that this is not a dream. I was choosen to go to the ball. Cinderella, I am.

pamphlet is up and ready to be printed

2007-11-19T21:09:00.000-05:00

Well, the work is done. Our pamphlet on I.B.C. is all done.
I wrote it. Julie made it look wonderful. Now we need all of you to help us. Please print out a few copies or burn it to cd and have your local printer print up lots of copies. Then get them out there. Please spread the word about I.B.C.

new blog

2007-11-05T13:18:00.000-05:00

Hello all. This is all new to me so please be patient with me. I am hoping that this blog will keep my site updated without driving my most patient, web designer daughter, out of her mind. I can never thank her enough for all the time and effort she has put into this project.

The most recent addition to this web site - IBC Research Foundation BioBank was something that was brought to my attention recently. It is a secure and privacy insured site where we can all participate to make a difference. They are gathering medical reports as well as samples of tissue to further the understanding of what makes this ibc tick.

Priscilla's IBC Blog • Up & Running!

2007-11-05T00:12:00.000-05:00

Welcome to my IBC blog, please check back often!