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Topic: IBC Information and Resources

Forum: IBC (Inflammatory Breast Cancer) — Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is NOT recommended -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Jul 25, 2011 11:34PM, edited Oct 7, 2011 02:04AM by HollyinMich

HollyinMich wrote:

So many women find themselves here on BCO to find information and support after a breast cancer diagnosis or for concerns that they may have breast cancer. Many times women, like myself, find themselves googling information about their symptoms and eventually make their way here to this site and the wonderful BCO boards. Since finding myself in the same predicament a year ago when I first began having symptoms of IBC I have found some wonderful resources and information on IBC that I would like to share with all of you.

BCO's information on IBC is very informative and can be found here: http://www.breastcancer.org/symptoms/types/inflammatory/

The Inflammatory Breast Cancer Foundation's site is here. This foundation is dedicated on raising the awareness of type of breast cancer.  http://www.eraseibc.org/

ETA: The IBC Network Foundation is a new foundation dedicated to raising funds for research and promoting awareness.  Please check it out here: http://www.theibcnetwork.org/Home_Page.php 

The IBC Project Video created to raise awareness and educate women on the signs and symptoms of IBC.  http://eraseibc.com/blog/2010/10/13/the-ibc-project-video/

Printable brochure about IBC including the signs and symptoms.  http://www.eraseibc.org/pdf/brochure.pdf

Link to the BCO board topic created by Terry Lynn Arnold discussing her IBC map project.  http://community.breastcancer.org/forum/81/topic/771771?page=1#idx_4

Link to Terry's map that stunningly illustrates how many women are diagnosed with this "rare" cancer.  http://www.terrysmap.org

As a note: I put the word rare into quotation marks because I am wondering exactly how rare this disease is vs. just misdiagnosed. It seems since I found myself diagnosed with this rare disease I have met so many lovely ladies also with IBC and it's rarity seems to be found more in it's lack of discussion and awareness. I think we all hope to see that change!

If you find yourself just diagnosed with IBC or concerned that you have the symptoms of IBC, please take the time to read the information provided by these links as I think you will find them helpful.

Edited to Add:  If there are any other links with information about IBC that you know that are not listed here that you think is worthy to share please feel free to post them in this thread.  However, please keep those links as informational and related to furthering awareness about IBC in effort to keep things cohesive.

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Posts 1 - 30 (33 total)

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Jul 26, 2011 03:53AM tlarnold wrote:

Thanks Holly for the support. The video is very important to me and I am grateful to Matthew Steinhart for making this for us and giving it to us. Fran Drescher's Cancer Schmancer www.cancerschmancer.org/ was the first cancer charity that picked up the video, very support.

Also the map...I admit, my baby. That map helped to start a French speaking IBC support group in Canada and helped to get support to women who were alone in IBC in Australia. I can't wait to see what can come of it, the stories that map will tell of the women with this "rare" breast cancer.

Terry, IBC chick, class of 2007, NED

Dx 8/31/2008, IBC, Stage IIIc, 34/34 nodes, ER-/PR-, HER2-
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Jul 26, 2011 04:02PM kcrowe wrote:

I have been diagnosed with IBC back in March - I am 36 with two young children. Can any one tell me what inflammatory breast cancer looks like as it progresses??? I can not find pics or info any where to what it looks like as this disease progresses? Does rash seem to get better? Does it just get worse???

K Crowe

Dx 3/1/2011, IBC, Stage IIIb, Grade 3, 8/21 nodes, ER+/PR+, HER2-
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Jul 26, 2011 06:02PM HollyinMich wrote:

There really are no pictures I have found that illustrate progression. The only pictures I have seen are either at the time of diagnosis or after the disease was left untreated and has completely ulcerated the skin. It sounds as if you have a very unusual instance in that you had to stop treatment from your allergic reaction. I certainly can't imagine that these types of pictures that you are asking for would be easily found, because once it is diagnosed almost always the patient begins chemotherapy right away for the disease. For those that have not sought treatment I doubt that a photo diary would exist, because chances are they chose not to seek treatment due to some underlying shame or stigma that they have attached to their problem. 

With that having been said, I would say to look for any worsening symptoms that you already have and be on the lookout for additional nodal swelling in areas that are not already affected. Sorry I couldn't be more help, but there just really isn't this type of thing out there.

DX w/Brain Mets on 8/30/11. If God only gives you what you can handle then he must think I am Superwoman!

Dx 8/12/2010, IBC, 4cm, Stage IV, Grade 3, 0/8 nodes, mets, ER-/PR-, HER2+
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Aug 10, 2011 07:37PM HerSister wrote:

kcrowe - I remember your dilema about being allergic (& having anaphylactic shock) to Taxol.  Your oncologist wanted to give you Abraxane, but since it's in the same family (taxanes) as Taxol, you were hesitant to get Abraxane.  I just wanted to be sure you knew (in case it didn't come up in your research or from another member) that the reason Taxol (& Taxotere) causes allergic reactions is the chemical solution it contains.  Abraxane does not contain that solution, so is known to be much more tolerable than Taxol or Taxotere.

Here is more about Abraxane from the manufacturer's website (specifically about it being solvent-free): http://abraxane.com/works-paclitaxel-albumin.aspx

I found the following information at: http://www.differencebetween.com/difference-between-abraxane-and-taxol/ 

Difference between Abraxane  and Taxol

Component

Abraxane is based on albumin as carrier vehicle for the delivery of the drug. Taxol is chemical or solvent based.

Administration time

Abraxane requires less time usually 30 minutes than Taxol.  Due to the chemical componenets, Taxol is administered carefully and takes more than 3 hours for a single administration.

Premedication

Abraxane is modified with a natural protein albumin and hence less prone to  hypersensitive reactions. This eliminates the need for drugs such as  antihistamines and steroids before the schedule which prevent the occurrence of  hypersensitivity.

Efficacy

Although there have been no proven studies on the  difference in efficacy levels, generally Abraxane has been found to be more beneficial due to its non toxic nature and speed of delivery of drug.

Side effects

Due to its non toxicity the Abraxane is found to have little or no side effects. Since it does not require premedication, there are no side effects associated with these drugs also.

Survival time

The efficiency of any anticancer drug is based on the increase in longevity or survival time. Abraxane in the recent clinical trials has proved to prolong the survival of the patients by lessening the spread of cancerous tissues to a considerable extent.

Response rate

The complete cure or response rate from the drugs were found to be higher for Abraxane almost twice that of Taxol.

Cost

Taxol  being the first generation drug in chemotherapy and its simple manufacturing is less costly than Abraxane

I hope you have been able to start or you able to start treatment soon!

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Aug 15, 2011 08:03PM msjag wrote:

My friend has just seen a breast specialist, she was going to urgent care because she had a fever, breast was red, nipple sore, and felt like she had an infection. Breast specialist happen to be at that facility (she is on vacation, and this happened in a matter of two days).  Now she is told she has a bad infection in her body, lots of blood taken to do cultures, and IBC has been mentioned. She is headed for an ultrasound and biopsy. Oh my gosh, do I understand this right, it if is IBC, its already stage 3 and in the nodes?   We were just going to celebrate her 4 year anniversary of being cancer free (middle of chest tumor) and my 1 yr.  it never ends.  Any help, advice would greatly be appreciated.

Dx 9/29/2010, IDC, 1cm, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Aug 16, 2011 12:33AM HollyinMich wrote:

If she had a fever then chances are it is just an infection and not IBC.  You don't run a fever with IBC, only thr breast itself gets warm.  Sending lots of prayers for your friend!

DX w/Brain Mets on 8/30/11. If God only gives you what you can handle then he must think I am Superwoman!

Dx 8/12/2010, IBC, 4cm, Stage IV, Grade 3, 0/8 nodes, mets, ER-/PR-, HER2+
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Aug 16, 2011 03:06PM leisaparis wrote:

Holly is right @ the fever. Does not usually accompany the IBC symptoms.

YES, if it is IBC, it is already Stage 3. Not necessarily node involvement.

Praying for just an infection for your friend. Good luck.

Life is short. Live it one day at a time. Love always, laugh often and smile. God is Good. Leisa

Dx 10/7/2009, IBC, Stage IIIb, Grade 3, 2/21 nodes, ER-/PR-, HER2+
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Aug 16, 2011 03:45PM msjag wrote:

Thanks for the thoughts and prayers...so far my friend has been given a shot of antibiotics, and feels so much better, breast redness/soreness is going away by the minute.  Still awaiting cultures, appt with her reg oncologist on Friday...I reminded her her son had mrsa about a month ago...maybe she got..it...she is feeling more positve today, me too!!  Thanks so much

Dx 9/29/2010, IDC, 1cm, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Aug 27, 2011 12:34AM itsok wrote:

I am newly diagnosed IBC, waiting to get port placed to start chemo, PET scan and a second round of biopsies to make confirm how much of the breast is involved. But first round of biospsies came back positive.

 A week ago I was a healthy mom of three. 

 

Mom of 3 beautiful kids, married 20 years. 4 rounds A/C, 4 rounds T; left total mx for inflammatory breats cancer.

Dx 8/24/2011, IBC, 2cm, Stage IIIb, Grade 3, 3/20 nodes, ER+/PR+, HER2-
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Aug 29, 2011 06:55PM HollyinMich wrote:

itsok, so sorry you've had to join the club!  I hope though that you find the information you need here to help you on your journey and the support!

DX w/Brain Mets on 8/30/11. If God only gives you what you can handle then he must think I am Superwoman!

Dx 8/12/2010, IBC, 4cm, Stage IV, Grade 3, 0/8 nodes, mets, ER-/PR-, HER2+
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Sep 2, 2011 07:02PM Claudia413 wrote:

Holly has really posted some good information. As a volunteer with the Inflammatory Breast Cancer Foundation (www.eraseibc.com) and a 4-yr survivor of IBC, my thanks goes out to her. Terry Arnold also does some fantastic advocacy for IBC and her map is something everyone with IBC should beg to be on. One day I would love to meet these wonderful IBC sisters in person. We are in several of the same support groups.  Claudia

Claudia Fauver (IBC Class of 2007)

Dx 8/10/2007, IBC, Stage IIIb, 0/3 nodes, ER+
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Sep 20, 2011 10:17PM TNBC-er wrote:

I've been a lurker on the BCO boards for a little while. Mostly I read and learn...

But right now I'm having a tough time. I have what was termed skin mets from my stage IV TNBC, on and around my neck. But photos of my neck, taken 18 days apart, when shown to an IBC specialist, apparently show a high tendency to be IBC. I have an appointment with him on next Tuesday morning. Because of lack of lymph drainage, I have to "sleep" sitting up, or my face & throat swell to choking point.

I don't know what this means for me now. I do know it is extremely painful, has impacted my voice, and is starting to impact my swallowing and breathing. My neck looks terrible - all red and purplish, hard, swollen. I can't turn my head much.

I haven't read up on IBC (been busy trying to learn about TNBC). Are there any chemos more suited to IBC? What chances of getting to NED, if any?

Don't actually know what questions to ask, even...

Thanks for any input.

"The reasonable man adapts himself to the world: the unreasonable one persists in adapting the world to himself. Therefore all progress depends on the unreasonable man." Stage IV, TNBC

Dx 9/10/2011, IBC, Stage IV, Grade 3, 0/3 nodes, mets, ER-/PR-, HER2-
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Nov 6, 2011 01:54PM Nicki13 wrote:

Thank You Holly for posting all these link. My mom was just diagnosed with IBC and we are waiting for her PET CT to come back so we know what satge she is in. We pray we caught it early. How are you doing HOlly? It has been a year since you were diagnosed correct? I pray you are winning the fight. Thank you again for all the information. Have a beautiful Sunday!!

Blessings-Nicki

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Mar 10, 2012 02:40AM Bon_ wrote:

Oh my goodness...being off the board forso long that totally missed my dear sweet IBC sister/friend Holly passed away in November....God Bless her family.

This thread will continue to help many.

Dx 3/15/2008, IBC, 6cm+, Stage IV, Grade 3, 4/18 nodes, mets, ER+/PR+, HER2-
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Mar 20, 2012 03:44PM ateepay wrote:

IBC Fact & Fallacies next show: March 21st, 9pm EDT

 We will be honoring a family who finalized three state proclamations, New Mexico, Nebraska and Iowa, and will have returning guest researcher Dr. Fredika Robertson, Ph.D update us on the latest 'inflammatory breast cancer' news.  She will be taking calls if you have questions.

 

http://www.thruoureyes.org/ibcshow.html

 

Join us for this show, next month will be our 3rd year on air.

 

Patti Bradfield

www.eraseibc.com 

Patti

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Mar 21, 2012 12:07AM Bon_ wrote:

Hi Patti, will check it out, thank you.  Bonnie

Dx 3/15/2008, IBC, 6cm+, Stage IV, Grade 3, 4/18 nodes, mets, ER+/PR+, HER2-
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Jul 23, 2012 11:25PM autism_mom wrote:

Would it be possible to list some of the more reputable facilities for diagnosing and treating IBC. It would seem that google leads most to BCO right away so having a list of good facilities right here would be helpful. Thank you

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Aug 19, 2012 03:50AM trudy-erl wrote:

Hi autism-mom:

There are only 3 Cancer Facilities in the World who actually have a specialized Department for IBC. In the USA it is the MD Anderson, Houston, Tx.

I am a survivor of IBC, and have put a lot of effort into my homework. Unfortunately, because I live in Canada, and the immense amount of money I would have had to pay and couldn't....I did not get my treatment there.  I will, however, add that I feel I got tremendous treatment here. I got the most aggressive treatment possible as it is such an aggressive cancer.

Good luck

trudy

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Dec 1, 2012 10:51AM MNHarleysMama wrote:

I am newly diagnosed with Stage IV IBC, with several lymph nodes involved and bone metaisis. I  have gone just through 3 rounds of AC with Neulasta shot 24 hours after infusion. Have a port. They are discussing Taxol vs. Taxotere for my next rounds with Herceptin starting next month. I have terrible time with Benadryl, and wonder abou Abraxane. Any info ladies? I have also been given Zometa, because of metasis. Scared silly at first, MAD as hell to even HAVE cancer, but now grimly determined to get rid of it. Tentatively scheduled for double mastectomy (even tho only in left breast & lymph) in February or so, dependent upon the need for radation therapy (which I DO NOT want). Mother, both aunts, grandmother all had breast cancer, none had IBC, so removing both to prevent recurrance (aunt/ grandmother had recurrance, metasis and died. Mother/other aunt had double mastectomy, no chemo or radiation, and have had no recurrance and are 10+ year survivors).

Dx 10/25/2012, IBC, 2cm, Stage IV, Grade 3, mets, ER+/PR-, HER2+
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Dec 2, 2012 02:28AM ibcmets wrote:

Hi MNHarleysMama,

I had same diagnososis as yours in 6/09.  With ibc, chemo is always first.  I had taxotere, adriamyacin & cytoxin at same time for 8 months.  A year later I had bi-lateral mastecomy with reconstruction.  I'm ER+, her2- so I was put on Femara after chemo.  I also have been on Zometa for the bone mets since the beginning.  I did not do radiation.

Each person goes through different treatments according to their specific diagnosis.  I wish you the best with your treatments.  Please let us know how you are doing.

Terri

6/2009: ibc,stage IV bone mets, ER/PR+, Her2-, 1/2011: BMX/Recon, Femara & Zometa;10/13 Aromasin/Afinitor

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Dec 2, 2012 03:01AM MNHarleysMama wrote:

Hi Terri,

Thanks! I've been struggling since the diagnosis. I actually found a lump, and went for an exam and mammo Oct 9, and zoom, the bullet train just took off and here I am already through several rounds of chemo with my bald head spinning. And bones aching from the Neulasta, for sure. Definitely having some fun SE from the chemo.

It encourages me that YOU are still around, as I am very scared by the IBC survival stats. Or should I say lack of survival???

I have a 2nd PET coming up next week to see how the AC is diong (I can actually feel it working on the tumor after each chemo session, and my breast is not as swollen, almost looking "normal"). I have my fingers crossed.

Meantime, awake tonight due in part to the dexamethasone/zofran combo. Really make me feel like the stay puft marshmallow girl, luckily only have to take 3 days worth post chemo.

Dx 10/25/2012, IBC, 2cm, Stage IV, Grade 3, mets, ER+/PR-, HER2+
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Dec 3, 2012 12:08AM Bon_ wrote:

Hi MN Harleys Mom, glad you found us.  I always said that about this site is it's the best support group because it's open 24 hours and can attend wearing pajamas.

Terri is awsome and she has been through a unique treatment for IBC, she's the only one I know that didn't have radiation and had chemo for as long as she did with getting a complete response from chemo...I'm very intrigued with Terri's onc/team approach and think they are on to something with this approach, but as she said, different treatments for specific diagnosis. I'll share mine and also lists some tips, since we are posting on pin up and these tips may help many others for years to come and hope others will add on.

My chemo was 4AC & 4Taxotere, then surgery about 10 days after last chemo (chose bi-lateral mastectomy with no reconstruction), then radiation started about 5 weeks after surgery.  Since I was not post-menopause and was ER+, chose to have ovaries removed same surgery as bi-lat mx, so started Femara one week after surgeries.  Started Zometa infusions 3 mos after radiation and continued for 3 years and because my scans are clear, onc stopped it.

Emend is drug given for 3 days before chemo to help with nausea that the chemo will cause.  Zofran is also for nausea and given during chemo infusion in your IV and also prescription for home to take as needed. The dexamethosone steroid is what keeps us awake and swells us up.  I used my roid-time to get things done before crashing ha.

Taxol (Paclitaxel) & Taxotere (Docetaxel) are both Taxanes and come from the same tree, Yew.

Taxol & Taxotere can cause loss of finger & toe nails and to prevent this...1) trim all nails down; 2) put olive oil on cuticles and nails to keep moisture and avoid dry splitting; 3) bring ice cubes inside a ziploc/double to Taxol/Taxotere infusions and ask nurses to put it in the freezer, bring a bowl large enough to fit both hands finger tips in then just before the nurse hangs your bag of Taxol/Taxotere have her bring you the ice, then you put some in bowl for fingertips and keep rest in ziploc for toenails; after infusion is finished dump ice.

During Taxol/Taxotere, over-the-counter Claritin will help with the deep bone pain, but of course check with your onc first.

During Taxol/Taxotere, everything will taste like cardboard. I found that eating ice cream or pudding was good and no drinks tasted good except cold water.

Chemo causes constipation bad, pain meds do too.  Ask onc if it's ok to take Fiber Capsules and Colace (1ea per day), both over-counter.  During my AC I had bleeding and onc sent me to GI doc and he did my first colonoscopy and found a colon pre-cancer polyp, so he told me to take Fibercon & Colace every day for the rest of my life..I've found fiber capsules (dissolvable) are better than the hard Fibercon pill....no it does not give me the runs just keeps me regular..and my onc agreed with GI and told me that the majority of our immune system is in our colons and a healthy colon is necessary.  GI told me that Senokat and others like it are only for temporary relief and not to be taken everyday.

If having headaches while being bald, any air that hits your head can cause them, try wearing a nightcap (yes like a baby) to sleep in...sold at Amercian Cancer Society TLC website: http://www.tlcdirect.org/

The worst part about mastectomy surgery is the drains, just because it's something foreign in the body and in the way/annoying, they have to be stripped like milking a cow couple times a day and there's really only one sleeping position while they are in.  Had 4, 2 on each side, and one side of mine were out in a week and the other side in another week, so by end of 2 weeks they were all out, but some women have them in longer.

From day one of mastectomy, do the exercises to get your range of motion back...best one is walking the wall with your fingers.  It is a requirement to be able to raise arms over head and lay like that comfortably for half an hour before starting radiation, so do the exercises from day one and several times a day, no skipping it.

After mastectomy and axilla nodes are removed, nerves will have been cut so there's lot of numbness but also when the cold air hits arm or chest it will cause an achy pain....this took me a few months to realize what was happening and when it dawned on me, started covering my arm with blanket and made a sleeve out of tube sock (cut out bottom) for sleeping and that's all I needed, sometimes it will happen in the car if the air conditioner is blowing on me, so just turn the vent away from me.

Fans, fans, and more fans.  Hotflashes whether from chemo, Femara, or whatever, having a fan with you at all times will save you a lot of misery.  For a great battery powered fan that will fit in your purse that is quiet and efficient, I highly recommend the O2 Cool 5-inch which you can buy at Amazon.com and it holds 2-D batteries which last long time, fresh batteries fan blows cold.  Also recommend keeping a tower fan next to side of bed blowing at face, it will not only help to keep you asleep but help prevent nausea. Other places, one on counter in bathroom for when doing hair/makeup, one that can blow on your while doing dishes/cooking, one by where you  sit to watch TV.  The personal battery one in your purse whip it out in a restaurant it sits right on the table, at the movies, while shopping, during doctor visits, everywhere.  I like to take this opportunity to thank all of my fans, ha!  (I had a thread about this a few years ago under previous member name and we all got a kick out of it.)

Anything put on our skin is absorbed into our bloodstream. We have IBC which is in our skin, so we are more sensitive. My radiation onc told me to only use Dove "White" soap, it says 'white' on the box, because it is the only that washes clean.  She told me to get rid of everything that I have with "paraben" in it...which was just about every beauty product I owned.  Jane Iredale is a line of cosmetics with no chemicals.  Burt's Bees is a line for lotions, lip balm, etc.  California Baby (sold at Target & others) has chemical free shampoo and other products too.  I also only use green works cleaning products in our home, unlike before cancer when I used clorox and every chemical there was.

Radiation is a cake-walk compared to chemo.  If have rads, Emu Oil is awesome for radiation, it has been used in Australia for burns for many years.  My onc was amazed that with my light skin that I didn't burn badly. Emu Oil is sold at Vitamin Shoppe or online for about $20. We are empty nesters, so I walked around my house topless to help get air to my skin which helped too.  Do not wear your bra during radiation because it will rub off / sluff off the skin and that's some of the problem with people getting bad skin during rads (I did not have rub/sluff off), I wore maternity tops during entire rads weeks and for a month after (Rads continue to work on your skin for a month or so after, so continue).  If Aloe Vera is going to be used, make sure it is 100% no additives, I didn't use it.

If having anxiety and/or not able to sleep, ask onc for meds to help.  Anti-anxiety meds are so helpful and have made a world of difference for many of us.  Sleep is very important to heal and feel good, Ambien has helped me fall and stay asleep, that's the key staying asleep, interrupted sleep is like never having gone to sleep at all. Before IBC, I rarely took an aspirin and didn't like taking prescription meds, now that I've learned that chemo changed my chemical balance and that I need these meds, it's must better quality of life.

Don't let the stats about IBC get you down, we are all different and none of know when our time is up.  Being prepared for the worst and hoping for the best is a good thing no matter what kind of breast cancer we have.  Check out the Stage IV Forum thread "A place to talk death and dying issues" - it's not a morbid as it might sound and there is great and invaluable information there, and when prepared for the worst, it will give you a peace like no other, that will help you enjoy all the years you will live and your family will appreciate it after you're gone.  http://community.breastcancer.org/forum/8/topic/770023

Best to everyone and hope these tips help! ~Bonnie

Dx 3/15/2008, IBC, 6cm+, Stage IV, Grade 3, 4/18 nodes, mets, ER+/PR+, HER2-
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Feb 14, 2013 10:46AM, edited Feb 14, 2013 10:58AM by liv-

"Doctors" show and she has a foundation that pays for MRI's for anyone with a history of bc in family or braca1 or 2.       www.rightactionforwomen.org

There are places around USA that do self-referral body scans        www.superiorbodyscan.com/

 

PET/CT May Improve Prognosis For Patients With Inflammatory Breast Cancer.    Science Daily website source Society of Nuclear Medicine.    www.sciencedaily.com/releases/...

Have you looked at Paget's Disease of the breasts...something other than IBC to consider as well and possibly rule out at the same time so as not to have to go through duplicate testing. www.cancer.gov/cancertopics/fa...

the page all this information relates to is here >>http://community.breastcancer.org/forum/81/topic/798726?page=1#idx_20

~~~~

much Luv ~~~~~ xx Liv xx ~~~~~ ........ DX Apr 12 - IBC - 10cm -Trip Neg - Stage 3C - 17/24 nodes bad - Adriamyci Doxorubicin Docetaxel Cyclop - Tac Xeloda Nov + Navelbine Dec 2012 combined

Dx 4/13/2012, IBC, 6cm+, Stage IIIc, Grade 3, 17/24 nodes, mets, ER-/PR-, HER2-Chemotherapy 04/11/2012 Adriamycin, Cytoxan, daunorubicin, Doxil, Navelbine, Taxol, Taxotere, XelodaSurgery 08/13/2012 Mastectomy (Left); Lymph Node Removal (Left)Radiation Therapy 10/01/2012 ExternalChemotherapy 11/07/2012 XelodaChemotherapy 12/18/2012 Navelbine
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Mar 5, 2013 10:26PM, edited Mar 5, 2013 10:30PM by Rinna73

Wow, thank you so much for this thread and all the references in it. My sister is facing a diagnosis of IBC, but the delays for a conclusive biopsy result is driving us all nuts. 

There really needs to be more aggressive screening protocols for this disease, because it does not play around. My sister noticed a lump around Christmas, then boom! Two weeks later, she needed emergency attention. What's worse, the doctors and hospitals she reached out to for help treated her condition as though it were a more common breast cancer, not IBC.

Thank god for this board. Seeing survivors of IBC is really giving me courage to fight for her. 

edit. Just read the post that said Holly passed away. God bless you, you beautiful spirit. 

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Mar 6, 2013 01:53AM Bon_ wrote:

Hi Rinna, I posted to your other thread for your sis.  We all miss Holly and it's great that her thread continues to help others.

Dx 3/15/2008, IBC, 6cm+, Stage IV, Grade 3, 4/18 nodes, mets, ER+/PR+, HER2-
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Apr 16, 2013 10:31PM rosebyanyothername wrote:

hey all,  i am new to this and am reading posts to figure it all out .  how much to share , or not, how to word it all.

Dx 4/8/2010, IBC, 3cm, Stage IIIb, 0/1 nodes, ER-/PR-, HER2-
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May 24, 2013 03:42AM kaeyreed wrote:

My sister was diagnosed with IBC and IDC in February of this year.  I am so scared for her.  The treatments make her so sick.  My question is she has had three chemo treatments and she says the cancer has not shrunk.  Is this normal, is it too early or is that a sign it's not working.  I am in CA and she is in OH.  I am so worried for her.  She is so very sick!  I have read a lot on this but cannot find anything that I can understand regarding prognosis.  She can't have mastectomy until probably September.  She said she is Stage 3 but how do they know that without having done the mastectomy?  If anyone can give me any information I would so appreciate it!

Dx 8/14/2009, DCIS, 3cm, Stage 0, Grade 3, 0/0 nodes
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May 24, 2013 03:32PM ibcmets wrote:

IBC is always diagnosed at least at stage 3 because the cancer is in the lymphatics system of the skin.  my onc had me do MRI, brain MRI, bone scan, PET scan as well and found out I had stage IV with bone metastasis.  Other tests need to be run because chemo is always first and surgery occurrs later after controlled by chemo.

Terri

6/2009: ibc,stage IV bone mets, ER/PR+, Her2-, 1/2011: BMX/Recon, Femara & Zometa;10/13 Aromasin/Afinitor

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Jun 9, 2013 01:05AM, edited Jun 9, 2013 01:06AM by trudy-erl

I find this quite disturbing. I was assured by 2 oncologist, it is extremely rare for IBC to come back into the other breast. I am wondering why so many people get different information and have a double mastectomy. Was I given the wrong information? :-(

I was told IF it returns it would be likely the spinal fluid, or organs; but not the other breast.

Would appreciate opinions....................HELP!!!!!

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Jun 9, 2013 01:22AM, edited Jun 9, 2013 01:25AM by trudy-erl

To Kaeyreed:

When they found mine, they did all the tests like CT chest, the organs, head, bone scans...everything. When they did the punch biopsy. Overnight I developed a lump the size of a goose egg in my armpit. I was told it was fluid filled, and they did an fine needle aspiration biopsy and yes the cancer was in the lymph nodes and I guess they didn't like being disturbed, therefore th goose egg (dry sense of humour). After 2 chemo. treatments the oncologist measured that specific lump and it did go down every time. By the time I had my mastectomy it had shrunk to where it was only about 1/5 of what it was originally and he said it was a very positive sign.

However, you must remember each one of us is so different, you simply cannot compare. I believe she needs to ask her Oncologist...always ask questions to the Oncologist, this discussion board, others who have had it. I did my homework and learned so much about IBC. There are also various types of chemo. cocktails that may work better. She (and probably you) need to have a long chat with her Oncologist and MAKE notes. There is too much to absorb when one is so upset.

If I can be of any help at all, please private message me......

Hugs,

Trudy

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