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Diagnosed with IBC

Geeper
Geeper Member Posts: 91

HI everyone- I just recently got diagnosed with IBC stage III on 12/17/15. I stumbled across this site in 12/12/15 and looked up the symptoms I was having. Had it not been for this site I would have just taken my PCP's word and antibiotics. I am glad I found this site. Ready to start this journey!

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Comments

  • moderators
    moderators Posts: 7,884
    edited December 2015

    Hello Geeper,

    So sorry to hear the news of your diagnosis but we're really glad to see that you found the BCO Forums to get the support you need.

    Knowing the symptoms early is so important so it's great to hear that this site helped you to become aware of them and act on it.

    Have you discussed treatment options with your care team?

    Here's a link to our section on IBC which includes information on treatment options and follow up care.

    IBC

    Come back often and keep us updated on how you're doing.

    Hugs, from the Moderators.


  • Mamiya
    Mamiya Member Posts: 151
    edited December 2015

    Welcome Geeper, glad you got a quick diagnosis. If you'll make your diagnosis and treatments "public" that will help us talk more accurately. There is an IBC forum, as I am sure you have discovered, but it's a lot quieter than the active treatment forums. You may want to find the "starting chemo in January 2016" thread https://community.breastcancer.org/forum/69/topics...so you can have some support with that part of the process, I find that it helps a lot to be able to talk with people going through similar things and side effects etc. Also, peek into the previous months' chemo forums to see what they were doing and get some previews of what you might expect. There are so many great places to find information here, I hope it helps you as much as it has helped me.

  • Geeper
    Geeper Member Posts: 91
    edited December 2015

    Hi Moderators and Notdoneyet!

    Thank you for your support and feedback. I am still getting use to this site. I will post to the IBC Forum.

    I have discussed treatment options with my oncologist and I got a porta cath last week and I was due to start chemo today, but my results from my PET scan showed 2, 1cm lesions around the lungs and they want to biopsy those lesions. They are certain that those lesions are cancerous but they want to take the appropriate steps. The oncologist said that if the lesions are cancerous that this will place me at stage 4. So, treatmant plan will change based on biopsy diagnosis.

    Thanks again for all the feedback! Sending my love your way 💕. Hang in there ladies!


  • bride
    bride Member Posts: 121
    edited January 2016

    Welcome Geeper,

    I'm glad you found your way here but sorry you've joined us. The IBC forum is great place for advice, support, knowledge, and all around caring. You might want to start your own thread about you: it gives both you and your BCO sisters a way to keep in touch.

    Remember, each of us experiences IBC in different ways but I learned more in the IBC group than I did anywhere. I got more emotional support than anywhere. I've come to love and treasure my BCO sister, especially the IBCers. We are here for you!


    br

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Bon-

    I'm glad I found this site too. You are all very supportive! I've learned so much from this site in a short span of time, just trying to wrap myself around this. Based on the information I've read and experiences I know that it's going to be a long battle and that the treatment plan will be aggressive at stage III and IV. Not mentally prepared but getting there. Physically I feel better than I have these last 2 weeks and that's probably due to a change in my eating habits.

    I hope the treatment plan is both the same for stage IV with lung mets. My oncologist made me worry last week and said that mastectomy would probably not be an option if stage IV with lung mets. I won't know until next week once they've done the biopsy on those lesions

    I see that you were dx back in 2008 and you give me hope!

    I'm here for you too, glad to meet you Bonnie! Happy New Year..




  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hello Bride-

    I'm thankful for finding this site as well. Everyone on this site is so knowledgeable and supportive.

    I definitely will start my own thread and tell you about myself.

    I thank you for your support and kindness. Happy New Year!



  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Bonnie-

    Sorry for the late response. I've been running around like a mad woman, trying to tidy things up before I start chemo.I have an appt. for the biopsy on 01/06/16. I will be more active once I start my chemo.

    I'm am sorry to hear that you're having other medical issues unrelated to IBC.



  • meadow
    meadow Member Posts: 998
    edited January 2016

    Geeper, welcome! There will be a thread for those starting chemo in January, you can do a search for it. I joined the "Starting Chemo Sept 2013" when I started chemo in 2013, and I am so glad I did. There is only one other IBCer in my group, but the comradery was and is still significant in my journey to good health. It really helps to talk to people going thru it with you at the same time. If you haven't checked it out please do! Hoping you find tons of info and support here.

  • Valstim52
    Valstim52 Member Posts: 833
    edited January 2016

    Hi Ladies

    Geeper : Looks like I may be in your boat as well. I'm due to start chemo 1/7, port place in tomorrow. Due to holidays the pet scan is not until weds. I'm worried about mets elsewhere. And chemo being delayed due to additional biopsies. Any tips on getting through this scans and possibles?

    I asked my surgeon if I go from a 3 to a4 what's the difference? He said both have aggressive chemo regimens, but that IBC is sensitive to chemo. Nothing said if it's somewhere else. I'm beyond scared. 

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    Val,

    As I understand it they should proceed as if stage 3 even if they find mets. I can't promise that is what your doc will do if that situation arises but that is what a lot of people say. And lots of people get to NED with mets so it's not the end if it happens.

    I tried not to think about it as much as possible during the initial scan phase, worry is so hard. Go to the movies!

    Good luck to both of you (Geepers and Val). The beginning is the hardest, and even though treatment is hard, it seems easier than the waiting

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Meadow-

    I will be joining the "starting chemo in Jan." as soon as I get started with chemo. I am anxiously waiting", as I fear that it maybe spreading to other organs of the body. My oncologist pushed the chemo to next week because he's ordered a CT guided biopsy of the chest for tomorrow (01/06) and a CT of the chest, abdomen, and pelvis for Friday (01/08). It seems redundant to me as I already had a full body PET scan. I hope to join you soon. I'm ready to fight. We can do this.🙏 Before I forget, this site has a "Tips for Chemo Thread", don't know if you've checked it out but the ladies have great tips

    Hi Valstim52-

    I'm sorry to hear that you may be in the same boat as me. Hang in there! The waiting and the unknown is awful I know! I have two kids (14 son, 18 daughter)I have to fight to live a longer and prosperous life for them because they need me.

    The holidays delayed most of my test. My actual oncologist just came back from vacation. I just can't wait to start chemo. I am also scared, but I have tremoundous faith and I know I will do just fine.

    My breast biopsy did not hurt; just felt tender for about a week. My portacath was painless; it just feels weird when I stretch my neck but I'm getting use to it. I had an MRI of the Brain and PET scan of the entire body and an electrocardiogram on 12/28. I drank plenty of fluids and did not eat the day prior to my surgery after 7pm. MRI of the brain was not uncomfortable except for the contrast dye. The dye left a copper taste in my mouth and I felt nauseaous when I went into the machine. For the PET Scan they took me to an isolated and injected me with a radioactive substance, called radionuclide. I was left in the room for about an hour but the machine was silent, not loud like the MRI machine.

    I try not to let this diagnosis consume me and preoccupy myself as much as possible. I've been turning negatives into a positive. I got laid off on 11/19/15 and my last day of work was 12/31. My company gave me 6 months of severance pay and benefits on top of unemployment pay. I think this was a blessing in disguise to help me get through treatment. My daughter said"I hate your eyebrows now that you lose them I can color them in for you". This has brought my family closer. I'm living for today and not tomorrow, because tomorrow us not guareenteed for any of us, sick or unsick.

    Bon and Notdoneyet-

    Thank you ladies for being so supportive. I admire you guys. Bon, I sure hope it's benign. I see my oncologist Friday afternoon.

    Everyone have a blessed day. Sending you love and keeping everyone in my prayers.

    Monica


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi all-

    I forgot to mention I saw my plastic surgeon today and he was the sweetest person I've met. He made feel at ease and was optimistic and grabbed my hand and said "you are going to live a long life, I'm gonna be giving you a nice set of perky breast, not as big as the ones you have". He gave me the biggest hug and made me tear up. I haven't cried in a couple of weeks and told myself that I wouldn't, but couldn't help myself. He is a genuine person and caring. Lately, all I've been getting from some of my doctors is lack of empathy. Like I know the statistics of IBC and if it's so aggressive why have I not started chemo? @ my oncologist who told me "changing your eating habits are not going to do anything for you", after telling him I feel healthier because I'm juicing and I've cut processed foods.




  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    Geeper,

    Great positive sounding posts, sounds like you are in a good place as much as you can be with all of this!

    I am glad you found a PS that is good and with whom you connect but I do want to tell you now that the wisdom about IBC is not to reconstruct right away, two years seems to be the recommendation. I know some have done it and been fine but think about it and do your research and talk to your doctors before you get committed to recon immediately after initial treatment.


  • meadow
    meadow Member Posts: 998
    edited January 2016

    Bless your PS!

    Please let us know your scan results when you can. Hugs!

  • Nel
    Nel Member Posts: 597
    edited January 2016

    Geeper,

    I want to ditto Notdoneyet. I was dx 4 years ago with IBC. My onc actively discouraged reconstruction for a year to 2. If you have reconstruction and IBC reoccurs they might not be able to see or ID it due to the reconstruction. Ask your onc again and/or get a second opinion. In addition my onc discouraged a bilateral mastectomy (my thought was if you are taking one, take both) The concern being that if an infection developed in my "good breast" it would delay my return to treatment. He wanted me back in treatment asap following the surgery due to the nature of IBC.

    I have been living as a uniboober almost 4 years. It is fine. I have my fake boob for when I need or want. Mostly I go about my life a as uniboober, seldom wearing my prosthetic. I dress accordingly, and it woks for me. I could have gone back when I was done with treatment and had the other breast removed or had reconstruction then on the mastectomy side. I opted for neither, it is all elective surgery to me and I did not want to put my body thru anymore. Just my choices. I am 61, divorced and dating. Nobody has cared about my one boob!

    So take away - make sure you are in a good place with decisions re: treatment for IBC before thinking about reconstruction etc. Get your health in place and there is plenty of time down the road to make these decisions.


    Best,

    Nel

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Notdoneyet-

    I'm trying my best to stay calm and positive. So far so good. I know that chemo is going to be hard and going to take a toll I'm on my body. I'm just living my day one day at a time. When I start feeling down I get signs from God telling me he is watching over me. I find dimes in the weirdest places. I pick up pennies and smile when reading "In God We Trust". These little signs help me stay strong. My mom is a cancer survivor. She had endometrial cancer which is also a silent cancer. She had a pap smear and everything came back normal, she knew something was wrong and demanded a biopsy of her endometrial wall. She is 8 years NED and my biggest hero.

    My nurse nagivator scheduled all these appts. for me prior to the PET scans and said it was standard practice to meet with all of these specialist as they all get together once a week (counsel) to discuss the cases. The initial plans were to proceed with chemo, have surgery and then radiation, but the plans will change if the lesions turn out to be cancerous taking me from a stage III to a IV due to mets. My oncologist told me he would not do a masectomy if I was at stage IV. I tried canceling my consult with the plastic surgeon because I am following his orders but my nurse said to keep the appt. My plastic surgeon was just being optimistic; bless his heart.

    Hi Meadow-

    I'm definely going to share my results with you guys as soon I get them. 💜

    Hi Nel and Bon-

    I am taking everything you share with me into account. I thank you for your guidance and sharing your personal experiences.

    Bon, I have been looking into SSDI. I saw this information posted on one of the threads and really thinking of going this route, but part of me still wants to continue working. I really need my benefits. My old boss and other colleagues are sending me all these job postings from my for former employer. I worked from home and had flexible hours. I wanted to see how my body would do with chemotherapy. It all depends on how it goes.

    Thanks,

    Monica




  • kicks
    kicks Member Posts: 319
    edited January 2016

    I was emphatically told NO RECON for at least a year. So when the year passed, I made an appt to 'check out options/opinions. Well, when it was to me to go to that appt. we had a major blizzard so no way could I drive those several hundred miles to it. Long story short - I truly had already decided that I did not want to submit my body to an unnecessary surgery that might result in problems. I was quite comfortable with myself and had no limitations on activities - but there are no guarantees with any surgery and could be 'not good'. Hubby and Son (adult) had told me continually they supported whatever I decided. Turned out they had talked a lot and really did not want me to do more/unnecessary surgery but that I needed to do what was right for me. So I did - no Recon and I do not regret my decision at all 5 years later.

  • traveltext
    traveltext Member Posts: 1,051
    edited January 2016

    Nel. Love the term uniboober.  That's me, since men are never reconstructed. From what I've learned on BCO, this may be a good thing. 


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi everyone-

    I just got back from my doctors office and the lesions are cancerous. I'm at stage IV and I start chemo on Monday. They are starting me on Taxol and it's going to be administered every week. My husband is devasted by this news because the doctor told him it is incurable. I already knew this, but he didn't so he was pretty upset. I told him that we just have to keep doing what we're doing and hope for the best.

    Bon- I'm going to file for SSDI, thank you for providing me with all the information.

    My oncologist is just going to see how I do with Taxol and we'll take it from there. I sure hope my body responds well to treatment.



  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    Geeper,

    Sorry you got bad news. BUT, it is still not a death sentence. There are people who have been living with IBC mets for many years. IBC is very rarely "curable" even when treatment starts at stage III, the reality is that it is a beast and it tends to come back. I hope the taxol will have great effect, I know it did for me, and wasn't that hard as chemo goes. Work through chemo and see how it goes and then consider getting a second opinion on surgery if that is what you want. I know that many stage IV IBCers do get surgery not necessarily to prolong life and not because they are curable but for quality of life reasons because IBC can ravage the skin on the affected breast and that can be very painful. You'd need to have a good response to chemo first, as would any IBC patient, before any surgeon who knows anything about this would do it though. Hang in there, get started on treatment, and take things one step at a time. PM me if you are interested in joining a really good (I think) FB IBC support group that I am a member of.


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Notdoneyet-

    It's okay no need to be sorry, we are in this together. I will admit that after reading statistics on the internet I was really scared and thought of this as a death sentence, but after reading some of the stories I am no longer scared. I read too much into statistics. I know now not to look at statistics.

    I'm glad to know that Taxol had a great effect on you. I hope that it has the same effect on me also. I'm going to take it one day at a time and hope for the best. I am not currently thinking about surgery, but it's good to have personal input from others.

    Thanks again for all of your input and support.









  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hello-

    I hope everyone is having a great Saturday. I forgot to ask my doctor a question. I start chemo on Monday and I've been juicing , drinking Matcha green tea, soursop and eat fruits high in antioxidants. I want to continue doing the same thing when I start chemo to boost my immune system.

    Do any of you know if taking antioxidants interfere with chemotherapy (Taxol) effects?

    Any input is greatly appreciated. Thank you!

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    My MO said if you can eat it it is OK but he doesn't want me to take any supplements. His nurse said not to go crazy with the antioxidants like green tea because they can actually protect cancer cells. Moderation was the key word.

  • meadow
    meadow Member Posts: 998
    edited January 2016

    Geeper,

    My Oncologist also said not to bump up on antioxidants, as like Hydranne said before, they strengthen all cells, cancer cells too. Thinking of you as you start threatment. You will do great!

  • Geeper
    Geeper Member Posts: 91
    edited January 2016
    Hi Notdoneyet-
    This is good to know. I found this website (link below) in where they indicate caffeine (matcha green tea= tons caffeine) falls under "Foods and other products that should not be used during Taxol chemotherapy" and so does supplements. I don't know the truth to this source (link) but I will discuss this more with my physician or chemo nurse. I just want to make certain that I'm getting the full of effects of Taxol.       

    http://foodforbreastcancer.com/articles/breast-cancer-diet-during-taxol-%28paclitaxel%29-chemotherapy

    Hi Hydranne-

    Yes, I also read that grapefruit is a "no, no". As far as raw veggies, I ams buying my organic veggies from Sprouts and Trader Joes and eating a lot of raw kale and broccoli.  Even though the bags say triple wash I too worry about the bacteria, so maybe it's best to stay away from raw veggies.  I am  beginning to feel like a rabbit.

    Hi Meadow-

    I will not bump antioxidants. Thank you for thinking of me and believing in me, I am going to do my best! I have my chemo bag ready to go.

    Thank you all for responding and providing feedback! You guys are the best!!! 

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Bon-

    Sorry, just read your response. My husband asked him how many patients he's treated for IBC and he said out of his 12 year career he's treated 20 patients. Does not seem like he's treated many patients for IBC, but I know that this is a rare aggressive form of cancer.

    I'm kind of scared now that you mention that you've only heard of one other IBC patient of getting Taxol as the only initial drug. I may go for a second opinion. I probably would not be starting chemo on Monday, had my husband not demanded treatment "ASAP and told him that he was playing with my life".       

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    Geeper, I got taxol first but I got it WITH carboplatin. As I understand it, not a doctor myself, just a patient who reads a lot and asks questions, it is important to hit cancer with multiple drugs initially, because it's a sneaky bastard and can evade and dodge... I hadn't read the caffeine bit, I drink a cup or two of coffee in the morning and asked if that was OK, my team said yes, just keep the fluid intake high throughout the day so as to stay plenty hydrated. If you can get "off caffeine" that might be healthy overall though, I am "mostly" decaffeinated but have that morning cuppa still. Do you know your ER/PR status yet? Have you had genetic testing? I know carboplatin is used for triple negative BC and BRCA positive for sure, and IBC also, regardless of the rest (according to my MO).

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Notdoneyet-

    This is what my pathology report states:

    12/20/2015: ER: 19%PR: 0%Ki-67: 51%HER2/neu: 1+ (not overexpressed) 

    I don't know what this means if anyone knows that would be great. I had my BRCA test and waiting for the results.


  • kicks
    kicks Member Posts: 319
    edited January 2016

    I started neoadjuvant 4 DD A/C and then did adjuvant 12 weekly Taxol. The A/C was easy/did not slow me down at all. The Taxol was NASTY - I was completely and utterly EXHAUSTED the entire 12 weekly, existing either in bed or on the couch. For others, it is the reverse - A/C nasty and Taxol easier. We are each unique and react differently.

    It is common to do 2 different different Chemo neoadjuvant, however, not true for all. As I've said many times, from the 'git-go' for me, the plan was always to do neoadjuvant to get 'it' to form a 'lump' and shrink so that surgeon could 'cut' it out. Then to hit it with adjuvant to attack 'anything' that might not have been gotten in surgery. Made a lot of sense to me and worked great for me. Was then on to rads a week after last Taxol.

    I dug out my 'Chemotherapy Patient Education Manual' which I was given at the ' Chemo Education Class' which was an hour long immediately before first infusion by a Chemo RN. It states "No grapefruit or grapefruit juice or pomegranates" in the general info and also on the pages for adriamycin and Taxol. It also says not antioxidant supplements or multi vitamin/min supplements. I had already talked a bit with my Dr to be sure it was OK to take my mega doses of Vit. D for my SAD (Seasonal Affective Disorder) and my B Complex - both were approved but was told NO multi vit./min. supplements. Was also told no dried garlic or onion supplements but OK to use fresh garlic and onions in cooking (I use a lot of both but always fresh). Told to not use soy. Told raw fruits/veggies were fine as long as I had them at home and cleaned them good. ( 'Organics' could have 'bad stuff' on it too.)

    "and told him he was playing with my life". - to not get into TX ASAP is " playing with your life" as IBC is very aggressive and rapid and even a day can make a difference. I don't know as I had/have no mets but it would seen to me that time to start TX is even more critical.

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Kicks-

    I hope my body responds well to Taxol. I just got back from picking up a numbing cream to over my port and two anti nausea medications (Compaxine and Zofran). I unfortunately did not get a chemo class because I due for it two weeks ago, but then got cancelled on me and when I went in Friday I don't think he was prepared to start me on chemo till mid next week but we demanded chemo as soon as possible. I wasn't even told anything about the numbing agent or anti nauseas medications. I received a call from the nurse at 4pm pacific time to ask the name of the pharmacy I went to because they needed to call in some scripts for me. So, I'm just winging it. I've been reading the threads on what to expect during during chemo and went to buy me the following: Biotene Mouthwash and lozanges for dry mouth and to prevent cold sores, GenTeal Lubricant for the eyes, Aleve, Immodium  for constipation, gloves (family members handling my stuff in case I vomit), motion sickness bracelet etc. Someone suggested ice packs for the hands and feet to prevent neuropathy.

    I have to take Vitamin D3 5,000 units, my PCP gave an Rx about a year ago when I complained about fatigue and I was prescribed iron because my iron was low, but I'm no longer on iron because I got taken off 6 months ago because my lab results were good except for my WBC, and the doctor said that I was probably just fighting an infection. My potassium levels are low too. I fell off a long board two years ago and broke my ulna and radius; open fracture wound (my wrist bone was sticking out) and I had to be on a potassium drip. I'm afraid of my iron levels dropping so I need to eat lots of greens and beans. I won't take any supplement with the exception of the Vitamin D3. I was putting Turmeric on the food I ate and I think it effected my blood pressure, I normally run 100/60. When I went in for the port a cath and biopsy of the lungs they had to keep running vitals because my blood pressure was 80/50. So, I am not adding anything to my food anymore just eating all colors of the rainbow in moderation.

    I'm proceeding with my chemo treatment tomorrow but I am going to place a request for my medical records and a cd for my scans. I am going to try to get into the City of Hope (Cancer Facility in Southern CA). I reached out to someone via social media with IBC that is currently getting treatment at MD Anderson this morning and she gave me the number for MD Anderson Breast Center she has Kaiser which has strict rules for going out of network and was able to get into MD Anderson. MD Anderson took care of the paperwork. I'm going to try City of Hope first and also call MD Anderson.   Thanks!