Looking for answers about length and course of treatment for IBC

Options
2»

Comments

  • Caseysmom
    Caseysmom Member Posts: 507
    edited August 2008

    Mcoyne-whalen:

    Keeping you and your mom in my prays.

    Big Hugs.

    Laura 

    · Share on FacebookShare on Twitter
  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2008

    Mycone;

    I am so sorry to hear your bad news.  Having my cancer spread to my brain is one of my biggest fears, and I can't even imagine what you and your family must be going through right now.  On another IBC mail list, ibcsupport.org, there are several women who have had brain mets successfully treated.  I hope this will be the case for your mom.  This is a heartbreaking, terrible disease.  Please keep us posted, and I will pray that all goes well for your mom. 

    · Share on FacebookShare on Twitter
  • catemarie
    catemarie Member Posts: 12
    edited August 2008

    Well here's another fly in the ointment...regarding stage IIIC.  This is a fairly new staging, and we have found not all web sites are updated with this info yet.

    Before adding IIIC, if there were nodes involved above the collarbone, it was given a stage IV, because the cancer had spread away from the breast and nodes surrounding the breast.  However, the nodes are not a major organ.  Thus, is was necessary to add the stage of IIIC.

    It is more serious as it has traveled further, but the fact that a major organ is not involved makes prognosis better and treatment is more along the lines of IIIB.

    (Yes, the skin is technically a major organ, but not an internal one which is the issue when cancer is spreading to organs internally.) 

    Unfortunately, IBC is wierd and not even all Doctor's, websites, and publications have the most current information. 

    A great website is www.ibcresearch.org

    Pray for a cure!

    · Share on FacebookShare on Twitter
  • ibcspouse
    ibcspouse Member Posts: 613
    edited August 2008

    A rose by anyother name..

    I do know that in Feb 08, Dr Cristofannilli dx my wife with stage 4,superclav but no distant mets.  I asked him directly.   I did look up Dr Horibagyi book on Locally advanced breast cancer and he said since 02 its been stage 4,  but like you said the pronosis is the same as stage 3b.  So its still a rose.  I guess it just depends on who you talk to.  

    · Share on FacebookShare on Twitter
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited August 2008

    Mconyne- Sorry about your mom...I hope you get the miracle....and a miracle for the rest of us.

    Maryiz -The supraclavicular and mammary area's are extremely hard to treat.  This is why they move us to stage IV even though we do not have bone/organ mets.  A lot of doctor will not come out a say you have changed stages, because they can treat you along time for neck mets, and want you to keep a positive out look.  I  have yet to meet anyone who had a total repspone to these area.  If anyone knows someone please give us some good news!

    Flalady

    · Share on FacebookShare on Twitter
  • Maryiz
    Maryiz Member Posts: 975
    edited August 2008

    FloridaLady, thanks soooo much for responding.  It seems to be a very gray area.  Would targeted radiation therapy work on those areas? I thought I saw a forum on here with targeted radiation therapy for small, distant mets.  I believe it was in Chicago.  If I find the forum again, I will let you know.  It was a new forum posting the research article.  Keep in touch everyone.  Mayiz

    · Share on FacebookShare on Twitter
  • Maryiz
    Maryiz Member Posts: 975
    edited August 2008

    Hi, It's me again, the forum is Targeted Radiation Therapy for Mets.  I believe it is posted in Science News.  Check it out. Mary

    · Share on FacebookShare on Twitter
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited August 2008

    Thanks Mary, I going to check this out.  I've already had rads in both areas...this is my biggiest concern.  Someone has been helping check on the research for doing a 2nd rads on same areas. A doctor a Duke Univ just completed a study. And my doctor has brought this up to me...but he knows how I feel about rads. I think he wants to treat a area where I had my bc break through my skin as a solid tumor. Yuck! I would never do my whole chest wall again....but I might consider rads targeted therapy.

    Thanks Again

    Flalady

    · Share on FacebookShare on Twitter
  • carmadi
    carmadi Member Posts: 10
    edited August 2008

    Im so sorry to hear that your mom has to go thru this.  My best friend went thru the same exact thing with getting chemo to the brain....not a very pleasant procedure, but shes still here!!!!  The worse is over and shes "up and running"......almost back to normal sans the hair loss and scarring.  Your mom will bounce back - it just takes time and alot of love and patience on your part.  My thoughts are with you.

    · Share on FacebookShare on Twitter
  • Rachelle923
    Rachelle923 Member Posts: 4
    edited August 2008

    My Mom was diagnosed in 2002 (at age 57) with IBC (chemo, mastectcomy---only one breast, wanted both and now it has come back to bite us---okay, so chemo, mastectomy, chemo and radiation it ended up being one full year of treatment. THEN.........in 2007, almost 5 years later it came back in her other breast.  so first time she had adriomycin/taxol,cytoxin, methotrexy (i think) then last year it was 5fu, cytoxin and methotrexy (along with radiation and surgery).  so after that second full year of treatment they waited 6 months for a pet ct.  And, now in liver. they tried Genzar and Avastin but she did not respond, she grew another tumor on her chest wall.  SO...................now we are in a clinical trial starting as we speak with Ixabepilone (oral).  This is approved IV but she is in oral trial.  Wish we would have had both breast removed in "02......Good luck, it's been 6 years.  Suspicion in lungs but not confirmed yet!  Hang in there, it;s a roller coaster but she really did have 5 cancer free years........

    · Share on FacebookShare on Twitter
  • Rachelle923
    Rachelle923 Member Posts: 4
    edited August 2008

    okay, just confirmed 6 mm density at the right anterior lung base immediately adjacent to the diaphragm.  not looking good for lung.  they will wait six weeks and 2 cycles on this trial and CT again to see if change in size. 

    · Share on FacebookShare on Twitter
  • Maryiz
    Maryiz Member Posts: 975
    edited August 2008

    I know it was mentioned in this forum about supraclavicular being tough to treat.  Does anyone know of anyone with complete response with treatment to that area?  As well, was it oral chemo or radiation that worked? This area still seems so ambiguous to me and wondered if anybody had any good news about that area, particularly in light of all of the new therapies evolving?  Thanks for any help, Mary

    · Share on FacebookShare on Twitter
  • Caseysmom
    Caseysmom Member Posts: 507
    edited August 2008

    Maryiz:

    I did have some lymph nodes that were positive in the supraclavicular area.  I was given three 1/2 months of IV chemo followed by 7 weeks of rad.  I have been NED for three years now with no problems with this area.

    Hugs

    Laura

    · Share on FacebookShare on Twitter
  • Maryiz
    Maryiz Member Posts: 975
    edited August 2008

    Thanks, Laura, It really helps to know that some treatments work for tough to treat areas.  Stay well, Mary

    · Share on FacebookShare on Twitter
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited August 2008

    Caseysmom,

    Was this your first round of rads?  I've aleady had a very heavy dose of rads in this area.  I really don't think my skin can take it again. I also have skin mets in the area for the 2nd time.  My doctor recently brought up rads again...

    Flalady

    · Share on FacebookShare on Twitter
  • Caseysmom
    Caseysmom Member Posts: 507
    edited August 2008

    Floridalady:

     Yes I only had one round of rads.

    Did they give you Biafine this helped me keep the area hydrated?  This helped me out a lot I cannot see where the rads treatment area was and my skin feels very soft.

    Laura 

    · Share on FacebookShare on Twitter
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited August 2008

    Laura,

    I did use Biafine during treatment...because my bc was so aggressive and we knew that before surgery that the tumor had met my skin that I was ask risk for IBC.  So they gave me a very heavy dose.  My rad's doctor told me...we are going to fry you good...and they did from the base of my throat to the top of my liver,under my breast bone and around my back.  I had breakdown at the front of shoulder down to the center of my mast site. This is where I now have very advance inflammatory bc. I also have a place where the bc came through my skin. Very yucky!

    So you see why I hesitate to redo my rads. If my skin breaks down, and the rads don't work again, the bc could continue to come through my skin even more  I don't think I can handle seeing this amount of cancer. 

    God...Please let this chemo work wonders!

    Flalady

    · Share on FacebookShare on Twitter
  • Caseysmom
    Caseysmom Member Posts: 507
    edited September 2008

    FloridaLady:

    Keeping you in my thoughts and prays that chemo will work wonders!!!!

    Hugs

    Laura 

    · Share on FacebookShare on Twitter
  • ebann
    ebann Member Posts: 3,026
    edited September 2008

    macoyne-whalen My treatment has been 6 months of chemo, and going in for surgery for a double mastectomy on 9/29. Then we will find out if the lymph nodes are cancerous or non cancerous. If cancerous then they will continue chemo, if not we will more on to radiation. So I am not sure how long all this will continue. I have IBC in my left breast 11 cm tumor is shrinking. and I have DCIS in my right breast. I wish your mother the best. It is not easy and yes it can get depressing. Get her out of the house, Take her out to lunch, go for a drive, go to a movie, etc. Get her a book or read to her, do a puzzle together, ask her if she would like to do something or what she would like. It is not always easy. I hope that you are getting support as well. Things can get overwhelming. Is your mom in a support group at all? Does the doctor know she is getting depressed?

    Blessings & Prayers; Elizabeth

    prayers

    · Share on FacebookShare on Twitter
  • PennStateMac
    PennStateMac Member Posts: 21
    edited September 2008

    Thank you everyone for all your responses and support.  But I have some sad news:

     My mother passed away last Friday, September 12, 2008 at 6:50 am.  Her name was Candace Coyne and she was 63 years young.  Her greatest joy in life were her grandchildren: Colin, 7;  Paige, 5; Quinn 21 months and my two boys Scott 4 and Jack 2.  She has taken care of my two boys while I worked as a teacher for the past four years.  She was their GiGi and she will be sorely missed by them.  She developed pneumonia on Wednesday September 10 and her condition quickly worsened as the night went on.  I was at my mother's side when she left this world.  I was lucky-I got tot say all the things I wanted to tell her like how proud I am that I am her daughter and that I am the woman and mother I am today because of her.  She heard me and cried with me as I said these things.  It was a gift that I had the time to do that before she left me. 

    To all of you who are battling this terrible disease please know that my prayers will always be with you.  I pray for your strength and your determination and for you to come out of this battle on the other end yelling to the world "I am a survivor!"  But we all know that you don't have to be NED to have survived this cancer-those of you who are fighting your way through this are truly survivors.

    For those of you who have mothers,daughters, wives, sisters, aunts, cousins, nieces or friends who are battling IBC my prayers are also with you for your strength.  I have walked in your shoes and I know how difficult it is to watch the person you love suffer through this.  I know that you would take their place in a heartbeat if you could and battle this disease for them. 

    I wanted to tell you all who my mother is so she is not some blog on a message board in cyberspace.  She was real, she had Inflammatory Breast Cancer and even though she didn't survive I know that she is with God praying for all of you that you will.  Thank you for listening.

    · Share on FacebookShare on Twitter
  • shrink
    shrink Member Posts: 936
    edited September 2008

    Bautifully said.  So sorry for the loss of your mom.  Glad she had you with her.

    · Share on FacebookShare on Twitter

Categories