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IBC DIAGNOSED, LETS SHARE OUR STORIES!

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  • Caseysmom
    Caseysmom Member Posts: 70
    edited March 2009

    Bette:

    Just checking to see how you are doing and if your drains came out yet?

    Hugs

    Laura

  • Caseysmom
    Caseysmom Member Posts: 70
    edited March 2009

    Amber:

    Just check in to see who you are doing.

    Hugs

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited March 2009

    Laura, The drains were removed at Hopkins in Baltimore today, and I got right in the car and drove home to PA to continue my wedding planning efforts. As of tomorrow, four days until our wedding.

    Am looking forward to a more comfortable sleep tonight.

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited March 2009

    Bette:

    Thats great news!!  Congratulations on your wedding and you are going to be a beautiful bride!

    Hugs

    Laura

  • EliminateCancer
    EliminateCancer Member Posts: 1
    edited April 2009

    Here is my "our" brief story and I hope that it encourages many of you. Mom was diagnosed with Stage 4, Metastatic IBC in December 2008 with HER2 Positive. IBC was present in Right Breast, Right Arm nodes, Neck Right Side and Right Side Chest Wall according to the PET scan and MRI (PET Scans are THE test). PET allows Radiologists to detect any contrasts and discolorations - much better than an MRI.  

    After much consultation and research she has undergone 4 rounds of TCH. The process of chemotherapy was easier than expected. She had very little side effects other than the typical bit of Nausea and Lack of Taste. Mild flu-like symptoms. Todays drugs to counter side effects are so much better than even 10 years ago. Neulasta increase white blood counts etc.

    To say the diagnosis was tough on our family was/is an understatement. No news could be worse than the potential of losing Mom at such an early age (early 60's).We have been devastated and cried more than you can imagine. But we focused this energy on fighting the disease vs. feeling sorry for ourselves. If mom can be a fighter we can too.

    Recently, after 4 doses of TCH (Herceptin every week and TCH every 3 weeks cycle), she has undergone a PET scan. The PET scan shows NO involvement anywhere. No signs of any cancer. We are Elated. The Dr. was taken a back and a bit shocked. The Dr. was not expecting such a positive response after only 4 treatments of TCH. However, we are now in unchartered territory....

    That being said, we know the risks of recurrence etc. While this bit of great news shows that she has responded exceedingly well to TCH - it does pose the next question: Does she undergo the FULL regimen of 8 doses that was originally prescribed? Does she stop here and undergo a Double Mastectomy to rid her chest of all breast tissue and significantly decrease the likelihood of recurrence since it recurs mostly in the same area? Does she take a few more doses of TCH and then undergo the Mastectomy? Several people have also suggested that she consider Hysterectomy as well to close all of the doors to Pandoras Box.

     The good news we heard has left us wondering what to do next? I'm fairly certain that if you placed 6 oncologists in a room with these results - each may have a different answer on how to proceed.

    All this being said, we take great joy in knowing that mom has responded so well to TCH and that we received such a positive PET scan.

  • Caseysmom
    Caseysmom Member Posts: 70
    edited April 2009

     I'm glade to hear that your mom's PET came back looking great!

    Since IBC is such an aggressive cancer she may still have to have the rest of the chemo treatment, however that is up to the onc to make that decision.  As for the bilateral mastectomy that is her decision.  I wish that I would have done the bilateral mastectomy for the following year I ended up have the other breast removed because my mom ended up with bc. 

    Your mom might even need radation therapy that again her onc will let her know.  I believe that with IBC it is standard procedure to have radation therapy.

    Hugs

    Laura 

  • bettelou68
    bettelou68 Member Posts: 151
    edited April 2009

    Back from the honeymoon and settling into married life!

    Had my rads simulation yesterday, and have to go back for another sim tomorrow because the rad onc decided to extend the field. So treatment is supposed to begin Friday.

    I was never supposed to wait this long to start rads. It has been 4 months since the end of chemo, and 3 months since surgery. Praying and hoping for no recurrence while I've been waiting,

    There are some wedding photos on FaceBook under Bette George Dietrick and also at this link Bette and Tom's Wedding.

    I am looking forward to the time when I have completed active treatment. I am going back to college this summer to finish a degree I started before bc. I just can't see sitting home and waiting for the cancer to come back.

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited May 2009

    Bette:

    How's the rad treatment going?

     EliminateCancer:  How is your mom doing?

    Hugs

    Laura 

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009

    Sharing my story...

     I am 34, a single mother and nurse.   I had an appointment with my GYN on 4/17/09 to schedule a hysterectomy due to unusual symptoms (I've been postmenopausal since I was 29) of bleeding and cramping.    The night before this appointment I was getting in the shower and walked past the mirror and noticed that my right breast was slightly PINK.  That's it, no pain, itching, swelling etc, just pink.  I was instantly concerned, and glad I was seeing the Dr. in the morning.  The Dr. prescribed antibiotics, thinking it was an infection, but I knew it wasn't, and would not leave the office without an appointment for a mamo & US.  I had the manogram the same day, and the radiologist said "I'm sure this is cancer"  she did a biopsy of a mass that was not near the pink area, and the mass could not be felt, eventhough she knew exactly where to feel for it.  The biopsy results were positive, ER+, PR+ and HER2+.  I had a biopsy of one of 3 suspicious nodes, and it was also positive.  My bone scan and PET CT did not show any other mets or masses (except the one on my left ovary I already knew about which I'm told is benign). 

    I started chemo (taxotere & carbo???) and Herceptin therapy on 4/29/09.  I have not been tolerating it well, I am so weak, dizzy, terrible headache, diarrhea etc.  My Dr. says this is not a typical reaction to the drugs.  If this is how I feel every time, I don't know how long I'll be able to keep it up.  Chemo & herceptin every 3 weeks for 6mos. then double mastectomy & total hysterectomy, then radiation, more chemo & herceptin....

    Any suggestions on how to cope would be greatly appreciated.  There are so many strong women here, it is very inspiring!!  Thank you!  Jessica

  • DianeE
    DianeE Member Posts: 30
    edited May 2009

    Jessica,

    Sorry you had to join the club.  I am glad you were assertive on having the mammo and that you had a rapid diagnosis.  I bet you are on TCH.  Do you have anyone that can help you after your treatments so that you are able to rest and get ready for the next treatment.  Are you trying to work?  For myself, drinking a lot of water before, during and after made a huge difference.  On my last treatment I slacked off and I could tell a huge difference in how long it took me to recover.  Are you doing neulasta shots? 

    How old are your children?  Are you a member of a church group that you could reach out to for help?  The women on this website will be there for you 24 hours/day.  It helped me through my treatment, even when I was not posting, I was reading. 

    Bless you as you go through this journey.  Please come back and let us know how things are going.

    Diane

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009

    Hello, Diane & Gg08 - and thank you for the kind words!!  I am on TCH, every three weeks, I am taking 2mos off work, but I really need to go back as soon as I can.  I will certainly try drinking lots of water before/during the treatment, I did lose 15lbs in the 7 days after my first chemo, it was a terrible week!  I am getting neulasta, but my WBC's were 35 (3x too high) a week after chemo, so they want to cut my dose in half.  My son just turned 17, I had him when I was 16.  IBC sure does force you to put your life on hold.  I'll keep you posted on how the next treament goes.  Loves, Jessica

  • lovemyfriend
    lovemyfriend Member Posts: 5
    edited May 2009

    Will somebody please check the new forum called "Worried" from Bobbie 37 and please respond to her.  I am the friend of someone newly diagnosed with IBC and her story sounds similar.  My suggestion was to follow her instincts.  You are the experts!

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009

    Gg08, wow, I did not know that SS would be an option, I will check into that, Thanks!!  My son and I are very close too, I have had him half my life already, and I'm only 34.  Thank you so much for your support!!

  • bettelou68
    bettelou68 Member Posts: 151
    edited May 2009

    Jessica, I just applied for social security disability with a diagnosis of IBC and was approved within two weeks! I received a retroactive check, which really helped us with medical bills and living expenses. You can apply online, and then they will contact your doctors for medical documentation. Take the time with your son to get through this and heal.

    I, too, had a very hard time with chemo. I worked full time for two months of it, but then go neutropenic and had to go out on short term disability. That has turned into long term. I am very glad I had the insurance so that I could take time to rest and fight my cancer.

    I have only six more radiation treatments to go. My chest on the mx side is red and angry looking, and I am very tired. Praying that this will prevent chest wall recurrence and be worth all the time put into it.

    I am still planning to go back to school this summer. Tuition is paid and textbook purchased. I am excited, yet a little scared. IBC has changed me so much. will I be able to keep up with the class? 

    Gg08, you are right. We can live again!

    Bette 

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009

    Thanks Bette!!  Best of luck in school this summer!!  I'll pray for you too! I stopped school for now, hopefully I'll be able to restart next summer.  I'm scheduled to go back to work next month, but my Dr. doesn't think that's realistic, &  I'm starting to think he's right.  SSD sounds like a good option, I will apply online & see what happens.  Thanks so much for letting me now about that, I had no idea it was an option.  IBC sure is different than other types of BC.  Please keep me posted on how your rad goes!!  I'm at the very beginning, getting my second chemo & herceptin on Tues. 5/19. Thanks!!  Jessica

  • Caseysmom
    Caseysmom Member Posts: 70
    edited May 2009

    Bette:

    Have they given you any time of cream to help with the burn?  I was given Silvadene Cream which I could use and I would take it off for rads then reapply it after treatment.  This helped allot have them give you the large tub.

    Jessica:  Good luck with your 2nd chemo treatment.

    Hugs

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited May 2009

    Laura, Udderly Smooth and aloe vera gel have been working up to this point, but I think now I need something more. I will ask my rad onc when I see her tomorrow.

    Someone on the April RADS thread suggested I try cornstarch under my arm to prevent the rubbing, and it seems to be working.

    Jessica, I will be praying for you with your second chemo.

    On Wednesday evening I will be going to a reception in honor of cancer survivors. It is sponsored by our hospital oncology department. I am one week away from surviving for one year with IBC.

    Bette 

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009

    Today was my second TCH tx.  First I had H, since I had such a hard time with the first round I'm being switched to weekly TCH instead of every 3 wks.  The H went ok, ran it in slow, and I got a little flushed, but that's it.  Then came taxotere, I had an immediate emergent allergic rxn, resp distress and spinal cord spasm. Very painful, and scarry.  It was resolved within 10 mins. My onc. came to see me, and wanted to try to infuse it ver slow, to try to sensitize me to it, as TCH is the preferred tx for my type of IBC, but that did the same thing. So no more Taxotere for me.  I then had my C without difficulty. Next Tues will be my 3rd round, and we are going to try Taxol.  The Onc. expects the same rxn, as taxotere is derived from Taxol, and usually causes more se, but we'll give it a try.  I am worried my outcome will not be ideal because the regimine I'll have has not shown as much promise.  Jessica, xoxo

  • Caseysmom
    Caseysmom Member Posts: 70
    edited May 2009

    Jessica:

    I hope that you are feeling much better today.   I am going to pray real hard that you will be able to handle the taxol next week.

    Very Big Hugs

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited May 2009

    Jessica, Hope today is better for you. Will be thinking of you next week with the Taxol. I had a reaction to Taxol, but was able to take Taxotere. I guess everyone's body is different.

    THREE rads to go. Have been experiencing significant fatigue this week

    Bette 

  • floridian
    floridian Member Posts: 3
    edited May 2009

    Wow - Mrs X - Good for you for demanding more investigation. This is why I don't trust doctors. I have had several relatives have advancing cancer because their unconcerned doctors kept telling them they were fine. I suppose there are good doctors and not so great doctors. How do you know if you have one that barely scraped by in med school and doesn't keep up with the continuing education? Very smart of you to keep at it. 

  • bettelou68
    bettelou68 Member Posts: 151
    edited May 2009

    ONE rads to go. Very tired and skin is a deep dark red.

    Gg08, thanks for the advice. My rad onc also said to go topless around the house. DH loves this!

    Have a good and restful Memorial Day weekend, everyone

    Bette 

  • NYmom60
    NYmom60 Member Posts: 14
    edited June 2009

    Hi All,

    Hope it's not to late to post. I am sort of new at all this having been diagnosed about two months ago. Here's my story:

    Found a lump in my breast in March, but really did not notice anything else at that point. I went to my gyn in the beginning of April and mentioned the lump. She felt it and thought it was probably a cyst, but she arranged an immediate appt for a mamo and ultrasound. Within a day, the gyn called and said it was a suspicious lump and recommended I see a breast surgeon. I made an appt for two weeks later.  The breast surgeon was suspicious about some changes he noticed, specifically that my breast was swollen and a small section of skin showed the peau d'orange.  I had a core needle biopsy that day and saw the surgeon again a week later. That is when he told me I had IBC. Shocked can't describe the feeling. I couldn't believe that I wasn't even aware of the physical changes to my breast. If it wasn't for the lump I felt, I don't think I would have noticed anything at that point if it wasn't for the surgeon pointing out the subtle changes.  A subsequent MRI confirmed the diagnosis, however the skin biopsy came back neg.  I've had two treatments of TCH, the next one is coming up next week. 

    Hope to get through all this ok (of all types of breast cancer to get, it had to be this?) It is encouraging to read everyone else's posts and I hope you all are doing well. 

    Monika 

  • NYmom60
    NYmom60 Member Posts: 14
    edited June 2009

    I had a CT, bone and muga scan.  These all came back fine. Had a sentinel node biopsy and three out of four nodes come back positive. This wasn't a surprise since the surgeon had felt one enlarged node upon my initial exam. Praying that the chemo does the job of killing these buggers!

    Hugs,

    Monika 

  • NYmom60
    NYmom60 Member Posts: 14
    edited June 2009

    Hi Gg08,

    Thanks for those prayers and am keeping you in mine.

    I am getting the Herceptin. I heard about the Lifetime movie but haven't seen it. Someone told me (maybe my onc) that prior to the discovery of Herceptin there was no drugs to deal with the Her+ portion of the diagnosis and made survival much more difficult. Thank God there are researchers out there constantly trying to find new drugs to cure us.

    I live on Long Island and am going to Stony Brook University for treatment. So far I have been pleased with the care I am receiving and I really like my onc.

    Thanks for asking about the side effects. Had a reaction to the Taxotere the first treatment so the second go around they gave me decadron to take in advance. Seemed to do the trick for the second treatment. Have had the nausea, intestinal upset and acid reflux all for about a week after treatment.  Hair is gone-shaved it off after second treatment since it was coming out in clumps.  Other than some annoying eye twitches (have no idea where that is coming from), not doing too bad. Hope it stays that way, because I want to try to sneak in a quick vacation after my treatment #4.  Where are you at in treatment now and how are you doing?

    Hope everyone has a good day. 

  • bettelou68
    bettelou68 Member Posts: 151
    edited June 2009

    CT scan was today. I'm hoping that the spot on my lung from last month is gone, or at least not bigger.

    Tomorrow I see the ENT doc to see if my ears are causing my dizziness. I have been dizzy for six weeks now.

    My hair has come back straight and spiky. About 2" long now. It used to be super curly before chemo. I hope I get my curls back at some point!

    Skin is improving a lot now 3 weeks after last rads.

    I am halfway through my summer course and got an A on the midterm.

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited June 2009

    Monika:

    My treatment was 4 cycles of A/C and 12 taxol I was also given Nulasta Injections 24 hours after chemo.   The only problem that I had was 2 hours after my first A/C treatment I was sick for 8 hours.  For the rest of my A/C treatments I was given Emend which I took 1 pill 1 hour prior to treatment and  the other two on the following days.  I was also given decadron and a script for it.  They would give me a large dose of decadron right before my chemo then I took the pills for the following 3 days.  While taking decadron I also put on a lot of weight.   With Taxol I had no side effects.

    After surgery I was given Gemzar and Carboplatnum (?sp) again I was given decadron.  The only problem that I had with this was just an upset stomach.

    The only problem that I had with decadron was weight gain.  I ended up with shortness of breath no other symptoms to suggest other wise. We wrote it off  due to the 90lbs that I gained. (Prior to dx I weighed 125lbs).  8 months latter I had a new smyptom of sharp shooting pain from my shoulder to my waist when I took a deep breath.  I went to my pcp who told me this new symptom could either be pneumonia or a blood clot so to be on the safe side he sent me straight to the ER.  After I had a CT scan of my chest the radiologist found 3 blood clots.  One large one in my left lung and 2 small ones in my right lung.  So please watch for any symptoms of blood clots such as discoloration in your legs or arm. (Which I had none of these symptoms my clots came from the deep veins in my  pelvis area).

    Bette: Congrats on your midterm and good luck at the ENT.  Keeping my fingers cross that the spot on your lung gone.

    Hugs and Love to everyone

    Laura

  • Caseysmom
    Caseysmom Member Posts: 70
    edited June 2009

     Bonnie:

    It's very possible this could be a clot.  I know that one of the test that I had done was a Doppler of my legs.  They wanted to know where my clots were coming from since that came back normal they did a CT scan of my abd and pelvis area.

    I was admitted to the hospital and  placed on and placed on IV heprin for 5 days.  Once I was discharged I was placed on coumadin.  What these drugs do is to help dissolve the clots I was on this medication for about a year and half.  Every week I would have to get my blood drawn the test they do is called a PT and INR the blood values of the test will tell the doctors how much medication you need. Some times your does may change and other times it may stay the same as the week before. While on these medications there is a list of food that you can and cannot have.  The ones that you can not have are high in vit. K.  The other thing with blood thinners is that if you have any type of surgery you have to stop this medication for approx 5 days.  I am now only taking 325mg of aspirin which I  take twice a day.

    Hugs

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited June 2009

    ENT doc found no simple cause for the dizziness and ordered a bunch of blood tests.

    I will hear about my CT scan results tomorrow or Monday.

    School is going well and will be done on June 30.

    Bette 

  • NYmom60
    NYmom60 Member Posts: 14
    edited June 2009

    Hi All,

    Bonnie: Thanks for all the info. I have two wigs and have been wearing them occasionally. I find the hats and scarves to be more comfortable so I have been wearing those more. You look great in your wig! Also, thanks for the advice about taxotere. I am going to try the ice on my nails. Hope to go to Myrtle Beach, SC for vacation (keeping my fingers crossed).  Good luck with your scans on Monday.

    Laura: Thanks for the advice. The blood clots must have been scary. Glad everything turned out ok.

    Bette: Congrats on your success with school and good luck with your scan results.

    Have a wedding to go to tomorrow so I'll be wearing my wig in front of a bunch of people who haven't seen me since I've lost my hair. Well, at least I don't have to worry about a bad hair day especially since it is supposed to rain, lol.

    Hope you all have a nice weekend.