Need a little advise

[Beckie]

Hi, I haven't been online for awhile. I have a question, my mom is still in bed. She still isn't eating much and is very shakey. We go to fox chase on the 22nd but, she was seen by her radiologist the end of may. He said, this is something that happens to 5% of people who receive brain radiation. She is getting tpn through her port every night and the physical therapist comes twice a week. Has any one else experienced anything like this. Her oncologist said he thought radiation pneumitous (?sp). Her radiologist said no it is the other thing and of course my dad can't remeber the name. My sister and myself are going to the doctors with them from now on. We started too in the beginning but when everything looked to be ok we stopped. Neither one of us live near philly so it is time off ect.. not that our mom isn't worth it because she is, we just thought it was ok for my dad to handle. This has been very hard on evryone involved. I am just looking for some help. She had the preventive cranial radiation and everything went down hill... I don't know what to do. We stopped the dehydration by getting her admitted just days into the not eating or drinking. Now she is drinking but really has no appetite. I am very scared. Sometimes i am ok other times I am really not ok. There just seems to be no answer. Just recently my dad told us he was under the impression my moms cancer had gone to her liver, my sister and I immediately call the Dr. Here my dad had walked around for two months thinking my mom had cancer in her liver and they had said they saw something but need to look futher. It isn't cancer. She has apparently had this most of her life because even she knew that it was there. Her home health nurse isn't very much help. She had said to me that she has mets to the liver. When I asked where she was getting this she told me she had spoken to the dr. When we spoke to the dr., he said he doesn't even know her. He speaks to the office and would not give dx to her anyway. I do believe we know what everone else knows now. I think my moms dr is a wonderful man and I do trust him, he has not lied to us even when it was very hard to tell the truth to us. He told us this is terminal, we just refuse to believe him. Not that we don't trust him but we have other Ideas in mind. My mom is 58 and I am 33, not ready to lose her. Too many grandchildren, Now is when I need her the most. I really miss her. We don't burden her with our problems anymore, she has enough to handle but I MISS HER. I know I am being selfish but I really do want my momma back. Talk about a roller coaster ride. My family has been through so much. Her face is also really swollen. As far as I knw, she isn't on any steriods. I think if she took steriods it would probably help but they had done so much damage to her she doesn't want any more. Please anybody with advise or thoughts even if I am not going to like the answer. I haven't liked any of this so far. I just don't understand and I am not a stupid person, although things have changed. Stress does aweful things in your life. I hate this cancer. So rapping up, if any one can help, I am in great need. Thank you for atleast listening....

[RandyW]

My first immediate thought is get a second opinion. IS this the same dr that made original Diagnosis? You need to find out exactly what is going on and where it is. I read your original post about Dr.and am concerned. Also if you need to go to appptmnts keep a small notebook organizer for all medical info. Appmnts, diagnosis, Treeatments, Meds and MOSt importantly questions for Dr. I believe you said something originally about Onc or Dr Not giving much hope and you can not battle this disease with that kind of attitude. THis is your mom and I do not blame you for being worried about Drs. Diagnosis. But think about second opinion. do not think about Terminal think about beating this disease.Deb did not have any radiation problems. Got steroids and anti nausea when she went through this. Had maximum curative radiation and had the energy to paint the inside of the house for us. She wanted to didn't like the white walls and beige. These are my thoughts about things. I know you will get a lot more info on possible scenarios of swelling and things happening. Saying a prayer and PM if I can help with anything. I do not blame you for having other ideas. That is good to hear and I ope your mom is around for a lot of grandchildren.

[EastCoastLadi]

Beckie,

First I am very sad to hear about your mom, my husband just finished with WBR, and up to this point, nothing of serious consequences has happened. And as far as the lack of communication with the drs., please whatever hospital they are at w/ your mom, go to the social worker, and/or the patient advocate and tell them, of your concern for the lack of information, and the miscommunication the drs. are having with the family. Please do this, even if you are going to get the 2nd opinion, you know it is up to the drs. to inform you, and they need to understand that they need to tell you all in a way that everyone can understand. I wish you all the best and pray for a good outcome for your mom.

Grace

[ztweb]

My first thought too is get a second opinion. We firmly believe that kind of thing at our house. My dad received AMAZING care from his second opinion.

My second thought is Superior Vena Cava Syndrome...only because that is what my dad had, and he was very swollen in the face. This is very scary, as for my dad it meant that the tumor was cutting the blood supply to and from the upper extremities and the heart. I too encourage you to get involved with the docs...this is so much for one person to handle...like your dad. We had it so all medical records could be released to all of us kids.

I hope so much for you that all is ok, and that there really is just miscommunication. God bless.

[mamasbabygirl]

I don't know much about the treatments, but I so understand the missing your mama part. My mom is here, but can't do anything we use to do-from family gatherings to beadmaking together. It plain sucks, but I feel blessed most days that I can walk into her room and hug her, talk with her, and have her make me laugh at the crazy stuff she comes up with. I have to focus on that or I would be severely depressed. Hand in there, sounds like you got it-this is a complete rollercoaster. Prayers for you!