Mom diagnosed with Stage IV IBC

MiniC

Hello all. This is my first post. Last October my mother age 67 recieved her initial diagnosis of Stage III IBC and after testing her diagnosis was changed to Stage IV in November. Her cancer had metasticized to the liver and bones. Initially they suspected the lungs but the latest CT scans have not shown anything there. In November she was given a  weekly chemo regimen of Navelbine and Herceptin. When that treatment did not work her doctor changed the  weekly chemo to Herceptin and Taxel which she started in February. In addition, the mass in her breast was too large for a mastectomy so she was given radiation to reduce the mass and take care of the lymph nodes.

 She has responded well to the radiation and the wound has healed better than the radiology oncologist expected. The latest CT scan has also showed that the masses are reduced in several areas and the nurses and doctors have been pleased. However, I am quite worried about mom. She has lost 40 pounds since her initial diagnosis and has little appetite. She has two more treatments on this regimen and then her doctor has said they will put her on a gentler treatment. I stay with my mother during the week days and most weekends my brother helps her out. However, during the whole time of treatment my mother has not always been good at taking her anti-nausea meds. Her medical team and I have tried several schedules and she has had difficulty in following any of them. I have been trying to let her be as responsible as possible for taking her meds but it has had mixed results.

I know that I am not the patient and more of an onlooker but if anyone could give me any input that would help me help my mother I would welcome it. I have literally put my own life on hold to help her out and spend the majority of my time away from my home. My kids are now in college so I do have fewer responsibilities at home but while I am helping her out I am in a place I have not lived in for almost 30 years and I have no support system there. Except for daily visits for bandaging with the radiation nurse and mom's chemo appointments life has been fairly isolated. Mom's siblings have almost totally withdrawn from the picture, and except for one friend who helps out occasionally my brother and I are mostly on our own. I know that I need to start getting some kind of help but I do not even know where to begin.

LovinMyMom

MiniC -

 So sorry to hear about your mother.  Sounds like she's fighting a tough battle.  She is so lucky to have you and your brother there to support her.  My mother was diagnosed with Stage 1 IDC 2 years ago.  She had a lumpectomy and rads.  Within a year she had a recurrence and was diagnosed Stage 3.  She had double mastectomy, full chemo and rads.  She had a clear PET scan when she finished chemo this January.  Just a few short weeks  ago she was diagnosed Stage 4, with METS to her lungs and possibly liver.  Through all of her past treatments she did very well with few harsh side-effects.  If you can keep your mom well hydrated, lots of watermelon and other water-rich foods it will help wash the chemo chemicals out faster and she'll have fewer SEs.  There's a lot of anectodal information on BC.org that taking Claritin the day of treatment and 2 days after reduces bone pain.  It seemed to work for my mom as well.  Maybe you could ask the doctor if there's a patch she could use for nausea; then you wouldn't have to worry about her forgetting to take her meds.  It must be tough turning the tables on your mom and being her caregiver, but you're right that keeping her eating and not too thin is important for her overall prognoses.  

Wishing you luck, hope for the future, and a dance with NED (No Evidence of Disease) in your near future. 

MiniC

Thanks so much for replying LovinMyMom. It  sounds like we have a lot of the same things going on. I wish you all the best on this journey. My mom has tried the nausea patch but had a pretty violent skin reaction to the patch after using it for about two months. The same meds can be taken in pill form but the insurance company has been very reluctant to give her the meds. They gave her six. Apparently the meds are quite expensive. We did not know if they were making a big difference but apparently they were. The bad taste that comes with chemo seems to affect my mom as much as the nausea.