Loading...

rmp1399's Message Board Messages

Loading...
Showing 1 - 10 of 107

Page 1 of 11

RE: Glioblastoma

by rmp1399 - October 10, 2016

I am so sorry for this news. It can be very overwhelming in the beginning. Try to stay focused and positive. I think it is very important to be seen at a major brain tumor center...and if not definitely a neuro oncologist. Send the scans to Duke for another opinion. I know it's a little far away in NC but it is one of the best places for brain tumors in the country. They will have so many options for you. This site is great for questions and support. Reading and getting insight from here helped me so much through my moms battle with gbm. Also try abta.org . (American brain tumor association) Keep us posted how everything goes. Prayers up for you all.
I'm so sorry you are at this stage. We just went through this with my mom. She passed last month. There were definite signs that she had that, looking back, were signs she was in the beginning stages of dying. We probably should have contacted hospice earlier than we did. She became much much weaker. She wasn't able to walk up stairs, She had very restless legs at night (which I didn't realize was a sign until I read the brain hospice timeline), she was became incontinent and slept a lot more during the day. We were handling things pretty well so we didn't call hospice, but I think they would've been helpful to my dad. Especially with bathing. It can't hurt to give hospice a call and have them do an evaluation. They will let you know what is needed. Ours was amazing. I can't say enough good things. They let us know when they thought we needed extra help. They came whenever we wanted them to come for bathing or anything. When the time was getting close....they even have someone that came to sit by her side all night so we could sleep. They are so very helpful. I bet your mom would appreciate the help.

RE: a new normal

by rmp1399 - June 13, 2016

My mom fought gbm for over three years. She had a stroke from the tumor bleeding (that's how we found out about the gbm). She was a little weak in her left side after that so we put in grab bars in the bathrooms and showers and made sure there were railings on both sides of the stair cases. Does he have any deficits at this point? I wouldn't make changes or move. You want to make him feel as normal and comfortable as possible. Once my mom started declining....we moved a bed downstairs to the main level in our den room....which had a bathroom as well. There was no way she could safely get up the stairs at that point. But that was three years after diagnosis. He could live a very normal life for a while!! Just want you to know...during radiation my mom was very fatigued. She slept all the time. I was so scared that this was the end for her, but it was just the effects of the radiation. It actually lasts a while after the radiation is over. Encourage exercise when he can. It will help. But let him sleep when he needs it. The brain needs it. It is definitely a roller coaster but try to stay positive....and for us at least, found solace in prayer. This is a great place for help and answers.
Oh my! You should absolutely should talk to your parents and see a doctor if you want to rule things out. The first thing that came to my mind when I was reading your post is that it sounds like anxiety. Are you generally an anxious person and worry a lot? I'm not a doctor or anything, but I actually myself felt some of the things you mentioned when my mom was first diagnosed with brain cancer. I was so tense, anxious and so scared, my head hurt and actually felt tingly, Id look in the mirror and feel like it want even me there. Anxiety and stress do crazy things to your body.....and going online and reading things is probably making it worse for you. I hope you feel better!
Oh my! You should absolutely should talk to your parents and see a doctor if you want to rule things out. The first thing that came to my mind when I was reading your post is that it sounds like anxiety. Are you generally an anxious person and worry a lot? I'm not a doctor or anything, but I actually myself felt some of the things you mentioned when my mom was first diagnosed with brain cancer. I was so tense, anxious and so scared, my head hurt and actually felt tingly, Id look in the mirror and feel like it want even me there. Anxiety and stress do crazy things to your body.....and going online and reading things is probably making it worse for you. I hope you feel better!
Oh my! You should absolutely should talk to your parents and see a doctor if you want to rule things out. The first thing that came to my mind when I was reading your post is that it sounds like anxiety. Are you generally an anxious person and worry a lot? I'm not a doctor or anything, but I actually myself felt some of the things you mentioned when my mom was first diagnosed with brain cancer. I was so tense, anxious and so scared, my head hurt and actually felt tingly, Id look in the mirror and feel like it want even me there. Anxiety and stress do crazy things to your body.....and going online and reading things is probably making it worse for you. I hope you feel better!

Etoposide

by rmp1399 - February 04, 2016

Does anyone have any experience with this chemo?

RE: MRI Confusion

by rmp1399 - February 02, 2016

This would absolutely be so frustrating! I'm so sorry you're dealing with this. I also know what it's like to go to a military hospital and gets answers. It can be difficult at some places. I just hope you can get another opinion....maybe off post. Just this week I had a friend (who's been going to our military hospital for stomach pains for over 18 months) and just now.... they found stage 3cancer. Keep pushing until you're satisfied!
I also agree with the occupational and physical therapy. Ask your doctor about it. It will definitely help. Just a side note on the radiation....for my mom, it was one of the roughest times. It made her so fatigued and she slept almost all day. I was scared it was the tumor growing and she wasn't going to make it. It is very hard on them and actually for a few weeks after it is over as well as the radiation is still doing its job in there . No one told us about this part, so I just like to pass it along. She made herself get up to walk a little everyday and eventually strength came back. Here she is three years later. It was hard for all of us to accept this as the new normal, but it is and you just have to Stay positive and love everyday!
My mom had her first reoccurance in August of 2015 (in original cavity right frontal)...which was removed via neuroblate. She did ccnu after. She already has another reoccurance and will be having the same procedure done on Thursday this week. Not sure what the plan is yet for chemo. I'm going to ask about temodar tho, since she handled it well the first go around. This new one is in the right temporal. She's been fighting since January of 2013. Almost three years!! Google Cheryl broyles. She's been fighting GBM for 14 yrs I think...and has had I believe six reoccurances. She has a website all about her journey. She also will reply to emails if you have questions.
Showing 1 - 10 of 107

Page 1 of 11

Loading...

About rmp1399

rmp1399 has not shared any information about themselves. Send them a message to tell them you'd like to find out more about them or add them as a friend.

We care about your feedback. Let us know how we can improve your CancerCompass experience.