IBC Chemo Questions

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pstanislaus
pstanislaus Member Posts: 15
edited June 2014 in IBC (Inflammatory Breast Cancer)
My Mom just got diagnosed with IBC, She is scheduled to start her 1st Chemotherapy treatment on the 21st. Her oncologist said that she is going to put my Mom on a very aggressive Chemotherapy treatment that could last up to 6 months and then she might have to go under surgery to remove the breast and more chemo/radiation therapy to follow.

Is this the normal procedure to treat IBC? How do I explain all of this to my Mom? She is 66 years old, and she does not know much about Chemotherapy and it’s side effects, I too am just learning about IBC and the treatment for IBC. I want to educate my Mom in a simple way on what she is going to go through and feel the next 6 months, I want to help prepare her without worrying her too much. She is worried that she is not going to be able to go to my brothers wedding in August, She’s afraid that she is going to be a burden on her family.

I am freaking out as well, but trying to stay strong for her. Any advice that you ladies can bestow on me will be greatly appreciated. I want to know that we can fight this disease and come out victorious in the end.
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  • alberta
    alberta Member Posts: 7
    edited May 2007
    I am so sorry to hear about your mom. She is very lucky to have you advocating for her. As you probably have read, IBC is an agressive form of breast cancer. As far as I know most patients are treated aggressively. I had what they called a dense dose of chemo which meant that the treatments were only 2 weeks apart. Tell your mom that the doctors are helping to save her life and that they are very good at handling side effects. She is probably scared because she remembers years ago hearning about chemo that made people very sick. It doesn't have to be that way anymore. Everyone that I know who has an IBC diagnosis has had a mastectomy. The cancer is running throughout the lymphatics, under the skin and that is the most effective way to be sure to get all of the cells. You can tell your mom that the mastectomy is not very painful, other than possibly emotionally. It is actually an amputation, so I found it to be less uncomfortable than abdominal surgery. I am just ready to begin radiation, so I can't offer any thoughts about that just yet. Reassure her that her family loves her and that she is not a burden. Those were the words that I found most comforting while I was on chemo.
    You and your mom will be in my thoughts and prayers,
    Cindy
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  • sweetmama
    sweetmama Member Posts: 3
    edited May 2007

    A close friend of mine was diagnosed with stage 3B IBC in in mid-March and had her first chemo treatment on April 1st. (Every 3 weeks) She has lost her hair and is tired but not nauseous and has been able to continue working as a realtor. Her 3rd session of chemo was yesterday but the Dr's sent her home saying it wasn't working. She went back in today to get on 2 new types of chemo which will be weekly from now on. (The Dr. told her she will have to be on chemo for the rest of her life). She is also taking morphine for the extreme pain. What do you think the new chemo will do for her? A brain MRI showed "good" so I guess that means the cancer has not spread? ANyone with a situation like this that can offer more info would be great!! God Bless!

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  • Samala
    Samala Member Posts: 2
    edited June 2007
    Hi Patricia,

    I had stage IIIb IBC last year (2006). I am doing fine now.
    The chemo wasn't as bad as I had heard. I either brought in a book or a music CD to listen to, but usually everyone falls asleep for a while afterward anyway. They give you something to help you not to me nervous and something for your stomach. They also gave me medication to take home if I felt too sick. I can say that the last two chemos were the hardest, but mostly because I just felt very tired. It is important to be loving and gentle with your mom which I know you will. You sound like a very caring daughter.

    I had a mascetomy which wasn't hardly painful because of the drugs they give you for pain. I had a few lymph nodes out too. I had radiation for 28 days afterward.

    I got through and your mom will too. You have to take it day by day, step by step and don't look too far ahead.

    The Lord was so good to me and I kept in touch every day with him. His phone is never busy....

    Love to you and you are in my prayers....
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  • pstanislaus
    pstanislaus Member Posts: 15
    edited June 2007
    Hi Samala,

    Thank you very much for your reply, it was just what I needed to here. I will make sure to take a copy of it to my Mom.

    My Mom started her Chemo and she is going for her 2nd round on Wednesday. Your words of hope and faith are what we really need now. It is true when I think too far ahead that is when I lose control and start feeking out.

    I am happy that you were able to fight this battle. and I hope that you stay cancer free.

    thanks again for you kind words and support

    Patricia
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  • Blondie
    Blondie Member Posts: 4
    edited June 2007

    Hello, sorry to hear about you moms cancer. I had to deal with my mom years ago when I was 18 when she developed cancer. Its really hard especially when you the child and really need and love your mom. Well good news is I had Inflam. breast cancer when I was 31 that was 15 years ago and I developed inflam breast cancer in the other breast 3 years ago battled border line ovarian cancer also with the second IBC then in Nov of 2005 had a brain tumor. Shocking isn't it. But if you would saw me today you wouldn't know I had a problem The best thing I could tell you is that things will work out. Make sure your mom goes to the Drs appointments faithly. She will be fine it is a very aggressive treatment to kill the cancer cells. But it words I can attest to that. Im still fighting the fight. Take care and god bless you and you mom.....Blondis

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  • sunping
    sunping Member Posts: 5
    edited August 2007
    Hi Eeveryone,

    My mom was diagonosed as having IBC (or locally advanced IDC), and is having chemo before surgery. She is arranged to have AC->T, four rounds of AC with 21 days in between, and then four rounds of weekly T.

    The question is, is there any objective measure to assess whether the chemo is effective or not? During the clinic visit after the fist chemo, the Onclogist just asked my mom whether she felt it was better (with smaller or softer lump), and measured the lump size. My mom answered 'Yes'. However, she has started to feel occational pain on the breast with cancer after the first follow-up clinic visit, and I am worried that the chemo might not be as effective as it could be.

    With this said, I understand that the effecitveness of adjuvant chemo (post-surgery chemo) is more or less presumptive because there is no way to measure the reduction in tumor size. And the chemo for IBC is in fact to address possible systemic spreading so the effectiveness on lumps within the breast may not be that important. Still, I am curious if there is any objective method to assess the pre-surgery chemo for IBC treatment!

    Thanks for your attention!

    Ping
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  • VAY
    VAY Member Posts: 29
    edited August 2007
    Ping:

    I am a little confused. Is her dx advanced IDC or IBC (inflammatory Breast Cancer)? There is a difference. Does she actually have a lump or mass? I was dx with IBC in 2001 and had chemo first as I was inoperable at time of dx. (due to the large area of breast tissue affected) Most of the time there is no evident lump with IBC but more of an infiltration of the breast tissue. I had six rounds of A/C and Taxotere at the same time, 21 days apart. It is very important that your mother is able to identify a noticeable difference in the breast with tx as that will determine whether or not it is working. If chemo is working, she should notice the breast tissue becoming much softer and eventually not be able to feel the effected areas at all. It is also important to do chemo pre-surgery to ensure clean margins and to destroy the cells within her lymph nodes. IBC is very aggressive and the treatment should be as well. I hope your mother is holding up and that all will work out for her. God bless you both!
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  • sunping
    sunping Member Posts: 5
    edited August 2007
    Dear Vay,

    Thank you for your reply. Yes, there is a palpable lump in my mom's right breast. And she has most of the symptoms for IBC (warmth, skin thickening in 1/3 of the breast and organge ???), but not all. For example, the lump was in fact palpable 5 months before she went to see the doctors for diagnosis, so, it was not really as aggressive as for some of the reports for other IBCs. The surgeon was concerned that it was mostly likely be IBC, so the surgeon suggested my mom to have Chemo first.

    Based on your reply, I guess that the effectiveness for a chemo after a few rounds is more a personal feeling, than something that can be precisely measured. However, it should be obvious after the whole package of chemo that the lump should be smaller and also softer. Am I right?

    Hope everyone will have a healthier and happier life!
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  • VAY
    VAY Member Posts: 29
    edited August 2007

    Yes Ping, there should be a noticeable difference in size and feel of the lump after chemo if it is working. I will keep you and your mother in my prayers. Take care and hang in there. You are just what the doctor ordered!

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  • pstanislaus
    pstanislaus Member Posts: 15
    edited September 2007

    Hi everyone,

    I can't believe it's been 4 months since my 1st got diagnosed with IBC. She has gone through a total of 7 rounds of chemo 4AC and 3T she has one more round of T next week.. wooo hooo!!!. We have been counting down the days for this and can't wait to say goodbye to the infusion clinic. Her battle is not over she still will have to have surgery and possibly radiation after that.

    Going through chemo is one the hardest things a person can endure but the doctors are very happy with her progress, every time we go to the docs she notices that her breast mass is improving so we are hoping for a very successful surgery.

    I just wanted to update everyone on the progress.. and please don't forget to keep praying.

    You are all in my prayers

    Patricia

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