Mom stage IV IBC ~ Dr's wont do Chemo, need prayers please!

JustaBlondy

Hello everyone, I haven't posted here before (but have on another thread), mostly been reading all I can about IBC.. Here is a quick glance at what my poor mom has been going through... She was diagnosed with breast cancer in late 07, underwent 1yr of chemo - lumpectomy - radiation - more chemo and was found to be NED for 8 months.. went back in for scans in april of 09 and found the disease was back and had also spread to her chest wall and lymph nodes under her arm..  On Tuesday June 16th she went in for her first treatment of Gemzar, On Friday June 19th she suffered a massive stroke that Dr's didn't think she would survive, but she did..  Now while at a rehab hospital we noticed an area of her breast that looked bruised/red/blotchy (same side as lumpectomy).. 1 month later after getting out of rehab hospital we see her oncologist and find out it is definitely IBC.. The shock for me is that they wont/cant do chemo because she is still so weak from the stroke, she is completely paralyzed on the right side, limited speech, but is trying so hard to overcome all of this...

Ladies, this is my best friend and I hate so very much to see her suffer and to think about what could be going through her mind right now.. She is living with me and my husband and our children.. I take excellent care of her .. I tell her every single day that I dont mind it one bit and that I wouldn't have it any other way, we cry together and still find ways to laugh together too... She was so outgoing and a real people person, this stroke has took it's toll on her...

I guess my question is, without chemo what is her prognosis.. I've asked the Dr to do some scans to see if it's spread because the IBC has been present for atleast 2 months now that we know of but she doesn't want to run any scans because she says reguardless if it has spread or not they still can not do any treatment ..  I mean with no treatment and the IBC has definitely grown in size in the past few weeks.. Her entire breast is extremely red and heavier than I thought a breast could ever be, hard as a rock too.. I am trying to figure this all out and all I can find online as far as prognosis is WITH treatment, I cant find anything that says WITHOUT treatment.. I am so so very scared that I dont have much time left with my mom and it's breaking my heart.. I am her only child and I swear that I just dont know how I can handle this..  We lost my dad in 2006 from Colon Cancer and Im just not ready to lose her too... I cant believe that on top of the cancer she had this stroke and it's just not fair... 

Im sorry that this turned out to be so long and somewhat of a vent but I cant even begin to really put into words the hurt and anger and sadness that is going on inside me right now.. Im trying so very hard not to question Gods plan but sometimes it's just so dang hard.. Her faith and smile and the ability that we can still communicate even though she cant talk much keeps me going. I am making the most of every day and spending all my time with her and letting my daughter who is 5 1/2 love on her mamaw as much as she wants and vice versa because I honestly dont know what tomorrow will bring...  Does anyone have any kind of idea what time frame IBC can take if you dont get treatment... Are we looking at a year - months - weeks - what?  I know no one know's exactly, Im just trying to prepare myself and my family because without scans I just dont know how else we can know what is going on... Is this making any sense to anyone or have I completely lost my mind... I apologize again and welcome any information that some would be willing to share... Please pray for my mom and for me and my family.. I will keep you all in my prayers and thoughts...

 Thank you ever so much

Lisa

Caseysmom

Lisa:

Sending prayers out to you and your family

Hugs

Laura

JustaBlondy

Bonnie,

 Thank you so much for your honest and sweet reply...  You didn't scare me anymore than I already am if that make's sense. I know how aggresive this beast is. However, it isn't my mom who doesn't want the scans, it's her Doctor who doesn't want to do any scans.  The doctor says there's no use in doing scans because she cant do any treatments on my mom,  but what Im wanting the scans for is to see if it's spread to her organs, bones or other places, to see what's going on so to say.. Her doctor is one of the top oncologist in this area and I have talked to a couple other Dr's whom both agree'd with her decision to not do treatment at this time. She says it will probably be 6 months or longer before my mom could regain enough strength to be strong enough to undergo any kind of treatments. They have even considered radiation as a means to slow it down on the skin alone but that wouldn't stop what's going on underneath the top layer of skin and they cant even do that because she had radiation to that same area already and was burned s'everely.. 

Hospice hasn't been called in or brought up yet but Im expecting it to be talked about at her next appt which is Tuesday the 8th..  My mom has and has always had such strong faith and to see her crying lately is about more than I can stand.. I have been taking her to her church every Sunday for the past 3 weeks and plan to continue to do so until we no longer can. I just dont know what to do, I really think the thing that is bothering her the most is that she may know she doesn't have much time left and has things she wants to say to me and other's and cant talk.. The Dr's say she has her right mind and there's no doubt in my mind that she does, that's very obvious but she just cant get out what she need's to say.. She's been working with a speech therapist and is getting better but it's a word here and there and sometimes a word can mean something totally different...  

Another reason I am wanting the scans is to make sure the pain she is having is related to the stroke and not the cancer, if it's related to the cancer she would need something stronger for pain than what she is taking... 

She has never been afraid of dying, she always has said God will take her on HIS time and nothing will stand in his way, and I agree with her, but that doesn't make it any easier on me.. I just cant, for the life of me, wrap my mind around why she would have to suffer a massive stroke on top of stage IV cancer.. It seems so cruel to me...  I know in time I will find out that answer but for now Im stuck left wondering and feeling resentful... She is a wonderful woman who has always went above and beyond what is expected, she never met a person she didn't like and who didn't like her.. She is truely beautiful inside and out and I will be by her side until the end and I will forever miss her when that time does come and just thinking about it is causing me to cry and I dont know how to handle this... How do I handle losing her?  It is really breaking my heart.. I mean I did know this time would eventually come, just not like this, not with her not being able to talk to me.. It's so so hard... 

Thank you again Bonnie, and thank you Laura for your prayers.. They are so needed and appreciated...

Lisa

Jadai

Oh boy Lisa.  I am so sorry that you are having to go through this.  My mom was diagnosed with stage IV IBC in October of last year and with chemo and surgery she was thriving!  Two days before her birthday in April she was diagnosed with brain mets and then a met to her spine which left her unable to walk.  I don't want to scare you but my even with treatment my mom lasted 9 months.  I lost her 7/9/09 and I also lost my dad to cancer in 2000.  BUT, this disease is so unpredictable.  There are soooo many women here who are living with this cancer.  If your mom is up for it I think it might be helpful to contact MD Anderson in Texas.  They have a center DEDICATED to IBC and some of the people on these boards are patients there.  PLEASE PLEASE PLEASE feel free to PM me if you have any questions or just want to talk.  I have been there and this is the hardest thing you will ever do.  (((((((GREAT BIG HUGS)))))))

Joyce

marypage

I am so sorry Lisa.  My mom was just diagnosed with IBC last week and the not knowing what to expect or what treatments and what types of reactions she is going to have is killing me!  She lives 15 hours from me so i am not able to be with her all the time and my father passed away from lung cancer 7 years ago so she is alone.  I just left her on tuesday and plan to go back as soon as they determine her chemo schedule. 

mary

Kfincher

Lisa,

I was diagnosed with State 111 IBC in December of 05.  Had spread to 6 lymph nodes and the tumor  covered my chest wall.  I am still here.  There is always hope,  right now just enjoy the time you have with your mom and you can always seek a second opinion.  I will keep you and your mom in my prayers.

Kathleen

OneBadBoob

My prayers are going out to you and your mom, Justa.

Does she have use of her right hand?  Do you have a laptop she could possibly use her right hand to communicate with?  That might be very helpful in her telling you and others the things she wants to say that she cannot speak.

NancyD

On the same note as Bad Boob's idea, but simpler, maybe make a picture board. Cut out pictures of common things and paste them to a piece of cardboard. Add a few simple words like "I" "want" "need" "you" "to" ...things she might be saying to you as you care for her. Be sure to put parts of the body pictures on there so she can point to an area where there's pain.

JustaBlondy

Hey everyone,

 Thank you for all the replies, suggestions, thoughts and prayers.

Unfortunately my mom doesn't have use of her right side but I have been working with her to try to get the feel for the laptop, it will take some time Im sure, but atleast she is willing to try.  We also have a communication board that the speech therapist brought us as well as a communication book, for some reason she just gets frustrated with those, the speech therapist seems to think that maybe she feels degraded when trying to use it but we're hoping that she will pick it up and keep trying to use one or both.. She tries so very hard to talk to us..

 Also, we do have an appt with her primary physician to discuss anti-depressants which she definitely need's, the therapist as well as myself seem to think the depression could be what's hindering her rehab progress and are hoping that once she get's on meds for depression she will regain some energy and positive thinking to try a little harder in her therapy... It's such a hard road when it's so massive of a stroke, it's actually a miracle she made it at all and I thank god for each day he gives me with her to show her and tell her how much I love her and how much she means to me.. 

My heart goes out to all of you who have personally been diagnosed with this awful disease, you are such an inspiration to me, that you come to this forum and offer your care, concern and lift the spirts of everyone here. Women really are amazing creatures.  Especially ALL of YOU!!!

And for the one's who have already lost someone to this disease, or are taking care of someone who has this disease,  Im sorry, my heart really hurts and feel's your pain and I wish no one ever had to feel that pain or go through this. 

My heart has felt so heavy lately, tonight it feel's somewhat lighter. Maybe it was the expertise that was offered here on this board or maybe it was just the fact knowing that there's still a lot of caring people left in a world that seem's to be so very cruel at times. I am very glad that I decided to post and I will continue to do so and to check here daily..

Thank you all soooooooooo soooooooooooo much... You have absolutely no idea how much you've helped me.... (((((HUGS))))

P.S.  I almost forgot.. Does anyone know of anything that works for the intense itching?  My mom's itching seems to have went haywire overnight, today I have seen her constantly rubbing it and when I ask her if it's itching bad she shakes her head yes.. Thanks again..

Love,

Lisa 

CapeBretongirl

Dear Lisa;  Thank you for keeping us up to date.  You are a wonderful, strong, daughter.  Please take the time to take care of yourself.  I say this because I was in a similar situation last year with my Mom, but you have the added stress of a stroke to deal with.  I went home and cared for my mom when she was diagnosed and stayed until the end.  She passed away  peacefully in my arms.  I thank God everyday for giving me my Mom.  I remember many times when I was caring for her, having to leave the room so she wouldn't see me cry.  It was traumatic, painful and at times I thought  my heart was breaking. So, I think  I can understand a little of what you are feeling.   Please when things & thoughts start to overwhelm you, please come back here.  (((Hugs)))Angel   

jaiden1ak

Wow, your life just seems so overwhelmed right now, I am amazed at how together you are under so much stress!  It is wonderful and very moving to me, to read that your mother is a woman that trusts God in all things concerning her life.  Your Mom is no doubt very proud of you, her loving daughter and the way that you are dealing with her illness and the stress on you and your family.  How wonderful too, that others have written and said that they went through the same diagnosis and are very much a part of this world and still others that  understood your sense of fear with regard to your Mom's situation.  I guess for me it always goes back to what carried me over the rough parts of breast cancer (and/or treatment) and pretty much every day; that is that God is bigger than any disease and as long as I was willing to surrender the whole thing to him, truly handing over every worry, he will give me strength and  peace that nothing else would or could.  Sometimes for me during the breast cancer ordeal, it was minute to minute, on my knees asking him to take the worry from me; only to stand up, start worrying again and thinking not such good thoughts (or starting to believe in the doctors and all their bummer language), then I'd be back on my knees in tears and asking again for his help.  He really is there for each of us and it is the going through times like this that I know I have found this to be absolutely true!  So just keep asking God to give you the strength, the words (for your Mom, the doctors, your children) and continue to praise / trust him every day.  Even when we don't understand why something is happening we can still praise God and trust that he has all things under his control and that he can work all things together for good for those who love / serve him.  (I sometimes have said "Praise you Lord because without this (problem / worry / circumstance) I would not have come to you in prayer and now that I have, I can feel your hand over my life and I am so grateful that you are there."  For in our praise we reveal we are trusting in him and in our trusting him, he increases our faith and in that faith we find strength; so we continue to look to him for everything.   Psalms 121 was and is a great help to me when I am deeply worried and seemingly overwhelmed with difficult decisions and problems.  I hope that you will find it calming to you.  God be with you and your family at this moment and each day!  Of course you are all in my prayers.

activern

Hi Lisa: My love and prayers to you and your family.  IBC Stage IV is so unpredicatable as someone said in an earlier post.  Unfortunately, with the stroke - chemo can cause increased clotting and other medical complications.  IBC is also very aggressive and allI can say is to continue praying and making the rest of her life comfortable - Hospice if she agrees to it.  I have recently been diagnosed with Stg IV IBC and living each day with prayer and hope.  I am getting A/C, 3-4 cycles before another CT scan and who knows.