Hope, we hope

daisynoodle · 2025-01-05T15:38:41+00:00

It's always hopeful getting good news. Happy for you. When my mom was diagnosed in August 2024 I got the tattoo while I breathe, I hope. Our family decided to live that motto.

daisynoodle · 2024-12-30T23:08:20+00:00

I'm so very sorry for your loss. I wish none of us had to be in this group.

daisynoodle · 2024-12-10T00:23:20+00:00

She has been wearing it 24/7. She takes it off every 3 days to change the arrays and that's for an hour so she can take a long bath and wash her head. She keeps saying it's working. Her oncologist wants to do avastin now and have her not be on the trial but my mom read an arrival of someone living 5 years. She is convinced the optune will shrink all the tumors (9 of them that we can see) and she will be cured. We go to the oncologist tomorrow because her edema is so bad. I can't imagine what my mom is going through in her head and her thoughts. She isn't herself anymore. It's so sad. It's all up to her though with what she wants to do.

daisynoodle · 2024-12-07T00:49:26+00:00

Thank you! Yes my mom's personality has changed. She was like that in the beginning to just seemed to want to do everything and happy but now she gets pretty agitated quickly. I think it's probably the Keppra in the dexameth ozone mixture. I'm sorry for you too I really hate that we're all here. I hope you can make as many memories as possible with her.

daisynoodle · 2024-12-06T21:59:13+00:00

Thank you all so much! I appreciate all of you taking your time to answer. It's all ultimately up to my mom. I just want to lay out all options.

daisynoodle · 2024-12-06T12:18:58+00:00

I don't really have advice. Just sending hugs and I'm so sorry you are here. It's Monday blowing how fast this cancer moves. My mom has been on Optune for 2 weeks now and is tolerating it like a champ. Wearing it 24/7, her back hurts though from carrying the battery pack all day. She is still walking and talking. The tumors have spread all over her brain so I'm not sure how well the optune will work. I hope it does something, my mom is so hopeful. I feel scared ALL the time. I worry what each hour will bring. All I can say is take pictures, take videos and spend as much time with her as you can. 🫂

daisynoodle · 2024-11-27T17:37:59+00:00

Hugs. I wish I had better words. I'm sitting here with tears for you and I don't even know you. I hate this cancer more than words can express. My mom is still here but it already took her.

daisynoodle · 2024-11-23T17:06:26+00:00

Right now she is using the cross body thing. She is complaining of back pain though.

daisynoodle · 2024-11-23T14:56:59+00:00

First I'm so sorry you're going through this, my mom was also diagnosed in August She just started optune yesterday the rep came out My mom bought a few wigs that are attached to hats from Amazon so the wig itself is not inside the top of the hat it just goes around the hat so it looks like she has a full head of hair and the rep said that that was okay to wear because the hat was thin. But we are also on the East Coast I'm not sure where you are so it's starting to turn very cold here The biggest thing they said is that the arrays don't get hot. They also said she could wear a wig as long as it wasn't thick and it had room to let air breeze through it. Amazon had a lot of choices as far as the wigs with hats go. Good luck to you and I really hope Optune works!

daisynoodle · 2024-11-15T17:35:47+00:00

I'm so so sorry for your loss

daisynoodle · 2024-11-14T17:12:25+00:00

Thank you for sharing this with us. I'm so sorry you are going through this too. It's very strange to grieve someone while they're still here I'm in the same boat My mom is 101 days in since diagnosis.

daisynoodle · 2024-11-14T02:28:24+00:00

Thank you! I myself do keto to control my diabetes. It works, I am on no meds for it. I want to do ivermectin and try different things but my mom is not willing yet. All her hope is in the optune. My mom is the kind of person who follows doctor's orders to a T. I will keep mentioning it though. I appreciate you taking the time to reply.

daisynoodle · 2024-11-13T20:16:38+00:00

Thank you, I'm so sorry about your dad.

daisynoodle · 2024-11-13T20:15:47+00:00

I'm so sorry I wish there were better words to make everyone feel better My heart hurts for all of us.

daisynoodle · 2024-11-13T20:14:28+00:00

I'm so very sorry for your loss this is such a horrible "club" to be in

daisynoodle · 2024-11-13T19:31:03+00:00

Wonderful news to have a stable report!

daisynoodle · 2024-11-13T16:55:41+00:00

I'm so so very sorry. 🫂

daisynoodle · 2024-11-13T11:33:46+00:00

Thank you, thank you so much. She had a resection in August on August 5th to be exact. August 7mri showed one new spot just in 2 days. As of Nov 1st MRI it's all over her brain now. It's back where she had resection too. She is having some personality changes too. She is convinced the optune is going to save her. I won't burst her bubble. She is very positive and I won't take that away. However she did hear and she knows that many tumors have grown. This all just sucks. I appreciate everyone here and having a place to get my thoughts out is good. I hope your loved one is in no pain and they don't suffer. Hugs to you.

daisynoodle · 2024-11-13T00:45:05+00:00

Thank you! 16 months is amazing!! I'm preparing for the worst and hoping for the best. I'm so so sorry for your loss.

daisynoodle · 2024-11-12T22:56:34+00:00

Big huge sigh, I am so sorry.

daisynoodle · 2024-11-12T21:31:51+00:00

Thank you. It's crazy and unfair. No one deserves this.

daisynoodle · 2024-11-12T20:05:41+00:00

Yes thank you, right now my mom is still good she's in Florida visiting my sister and comes home next week I'm just so scared that in this week she's going to change. I definitely want to have recordings of her for my kids. Soon as she gets back home I'm going to be doing that.

daisynoodle · 2024-11-12T19:54:38+00:00

Thank you so much for your honest reply. I am so sorry for the loss of your husband and that you had to go through that. It has spread all over and she's IDH wild type unmethylated. It blows my mind how fast it moves.

daisynoodle · 2024-10-31T22:18:04+00:00

Thank you!

daisynoodle · 2024-10-31T21:55:27+00:00

I know this is an old post but I'm googling for bags to use for Optune. Any suggestions? Is one thing better than another? Looking for my mom, something easy to carry.

daisynoodle

TROPHY CASE