Looking for similiar story as mine...

Options
vance38
vance38 Member Posts: 3
edited June 2014 in IBC (Inflammatory Breast Cancer)

I have a story to tell about my mom who was dx in the 1st week of Aug 09 with IBC and pagets of the breast. It started about a month before when she was feeling pain in her back by her shoulder and down her arm. She went to the chiropractor with no luck. She went to the neurologist who gave her pain meds that made her very sleepy.  The pain was so severe that she could not even go to work. The next week the dr sent her for an MRI.  In the meantime she went to ER one night with pain in her arm and back that she just could not bear. Also her arm was beginning to swell. She was admitted into the hospital and after a battery of tests they decided that she had cellulitis.  Turns out she wasn't getting any better and her arm was swelling to an enormous size and she said that at this time was when her breast started to show symptoms like redness, misshapen, leaking and general pain. They did a biopsy and came back IBC and pagets.

By the time she got her first dose of chemo was approx 3 wks later. Since then, she has not been able to get through 1 round of chemo. She is admitted into the hospital every time after getting chemo. Low wbc, fever, infection, extremely low blood pressure. Since this all started she has not been able to shower by herself, make any meals, walk by herself for longer than 1 minute. She spends all of her time sleeping or just laying in a recliner. She is too tired. The lymphadema in her arm also has her handicapped. She cannot move it at all. The arm is paralyzed. She has a huge wound to contend with. The wound covers her breast and goes under her armpit down her side, Her skin is rotting and leaking and smells awful. I have to wear a mask to change her bandages Her quality of life is very poor and mine is getting there also.

Has anyone heard of  a story so drastic and sudden like this. I cant help but to think that my mom was ignoring some of her symptoms. This is happening so fast. I cant even catch my breath. 

What does this sound like to you. Please be honest with me. I need to know where we are headed with this.

thank you

· Share on FacebookShare on Twitter

Comments

  • sadiesue
    sadiesue Member Posts: 6
    edited October 2009

    I don't claim to have a clue where you are headed with this.  Just wanted to say hugs to you and your mom.  I do know that IBC can come on super fast.  Mine came on suddenly.  If you search for inflammatory breast cancer on the internet, literature states that the symptoms can come on overnight.  It is so frustrating because it is nearly impossible to catch early.  I have no experience with Paget's.  I'm not sure by your post the age of your mother.  Perhaps that is part of the equation. It sounds like you and your mother are really struggling here and that you may have to really be her advocate here and get some second and third opinions on the best course of treatment for her care.  My heart goes out to you both. 

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2009

    Vance, I'm so sorry for the pain you're both suffering. I can't help with your original question, except to second Sunny's information about the sometimes very rapid appearance and progression of IBC. But I did want to suggest (because doctors rarely think of it) that a well-trained and experienced lymphedema therapist could evaluate your mom's situation for possible intervention. Reducing her swelling and restoring movement to her arm may be possible, and would go a long way toward reducing her misery (and yours!)

    Here's information about locating a well-qualified lymphedema therapist near you:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Hugs, prayers,
    Binney

    · Share on FacebookShare on Twitter
  • vance38
    vance38 Member Posts: 3
    edited October 2009

    Thank you for your replies. My mom has very poor dental health which could be why she goes into the hospital everytime after a dose of chemo. Her wound is so big and deep she could be getting infections from that. She also get neulasta with every treatment. She is on taxotere and andrymicin (sp?). She sleeps all the time and is extremely weak. Her insurance only covers 60 visits from the time of her dx up to a year so we are using those up. She is not a candidate for the hormone treatment so I guess that would make her HER2 neg? My mom just lost her brother in May and then her father in June and her cousin last week. The timing is alot of what is weighing on me.

    · Share on FacebookShare on Twitter
  • GrinAndBearIt
    GrinAndBearIt Member Posts: 33
    edited October 2009

    Dear Vance,

    Is there a way you can have a doctor order a nurse to visit your mom at home to take care of her wounds? I had a wound care specialst nurse for eight months. I too had a hospital infection. The nurse was wonderful and the constant cleaning of my wounds worked wonders. You two are coping with a lot. Do you have a family therapist? I think this is the time for you to reach out for help in every area that is available to you. Bring in family, friends, social worker, nursing help. Tell your doctor you need some help and get it. We will be here for you throughout this ordeal. God Bless you and your mom. Hang tough. 

    · Share on FacebookShare on Twitter
  • Jadai
    Jadai Member Posts: 182
    edited October 2009

    Hi,

    I am so sorry you are going through all of this.  I just went through the IBC battle with my mom and it was so hard.  Chemo can really kick some butt and it absolutely effects everyone differently.  I think that you need a visit to her Dr. to get this all under control.  Since she is so tired maybe you could start with a call to the Oncologist.  It is so difficult when you are the one that has to do it all.  Do the best you can and hang in there.  It might be time to call in some help for yourself.  Please PM me if you want to talk.  

    · Share on FacebookShare on Twitter
  • vance38
    vance38 Member Posts: 3
    edited April 2010

    My mom passed away 2 weeks ago today. She had 8 months with this disease. She was 56 years old. From the time she got diagnosed until the day she died she suffered. Everyday was an urgent. She was unable to do anything for herself. She was extremely weak. She also had many infections throughout the illness. I watched her transition. It was a struggle for her to transition. Watching her I could see she was stuck between two worlds. I will post more about this in pallative care. I cannot believe my mom is gone. Last May her brother died, then June her father died, and the first week in August she was diagnosed. This vicious cancer had spread so fast and so aggressively that you could actually see it coming out of her skin. It wrapped around her arm. It would start as lumps under the skin and then eventually come bursting out of the skin. She had wounds all over her upper left side. She was extreme even for IBC. In her last week you could see the cancer spreading in her neck and by her clavicle. I saw lumps forming under the skin. Please kiss and hold your loved ones tight and let them feel your love and also feel their love.  I have a feeling that love is all that matters in this life and anything is possible because of love. My mother taught me and my sister this through her disease in her last 8 months of life. We never knew we would be able to handle taking care of such an extreme case of disease complete with wounds, bathroom  needs feeding, bathing etc. All the while taking care of our little ones. Our unconditional love set un in autopilot and we were able to do it, thus teaching us probably the most important lesson in life. Love conquers all. Thank you Mom.

    · Share on FacebookShare on Twitter
  • ibcmets
    ibcmets Member Posts: 4,286
    edited April 2010

    I am so sorry to hear of  the loss of your Mom.  I also have metastatic ibc but have done well with chemo.  So sorry you had to go through all of this.  You've been a wonderful daughter to your Mom and I'm sure she appreciated everything you did for her.  God bless you in your time of sorrow.

    Terri

    · Share on FacebookShare on Twitter

Categories