Resources and support for families dealing with cancer and serious illness

fajterica, Angela Wright, how did the non-profit registration turn out?

I figured I’d chime in and give an update on our situation here. Mom just wrapped up her fourth round of chemo, and sure enough, things always seem to take a dip around this stage. That’s exactly what we’re dealing with right now. She actually handled the chemo itself like a champ, mostly thanks to Zofran 👍 (seriously, thank you guys again for all the tips regarding Zofran).
But man, she is completely out of it. She can't grasp even the simplest things, and honestly, it’s slowly driving us all insane. It feels like we're just tilting at windmills—we try to explain things to her, but it’s useless. Sometimes I feel like I should beat myself up for getting frustrated, because I know she physically CANNOT process it, but sometimes those feelings just hit harder than logic. And then I lose my cool... Then I calm down and the whole cycle starts all over again.

brightgardener8 said:fighter, @Angela Wright/">@@Angela Wright, how did the non-profit registration go?

I figured I’d weigh in with how things are looking on our end. Mom just wrapped up her fourth round of chemo, and true to form, things tend to take a turn for the worse during this stretch. That’s exactly what we’re dealing with right now. She actually handled the chemo itself quite well, largely thanks to Zofran 👍 (thanks again for all the tips regarding Zofran).
She is completely disoriented; she can't grasp even the simplest concepts, and honestly, it's driving us toward the brink of insanity. It feels like we're tilting at windmills—trying to explain basic things to her, but it's all in vain. There are moments where I want to beat myself up because I know logically that she *can't* understand, but the frustration just overrides reason. I lose my cool... then I calm down and the whole cycle starts over again.

My gogo is actually heading out during his break today to drop off the paperwork for the registration.👍 Hopefully, we have everything in order and won't run into any snags.🙂

Hang in there and stay strong. I know exactly what you're going through.🙄 I used to lose my patience with Mom toward the end too, especially when I had to spend an hour and a half feeding her, or when she'd spit food all over the TV like a hundred times. The worst part was the crushing guilt that would hit me afterward. Even now, thinking back on it makes me feel terrible.😢
It’s all a natural reaction. Deep down, no matter how much we consciously accept the illness, our subconscious still sees them as the person they used to be. You just have to keep pushing through.

I really hope you're still hanging in there and fighting hard. Please "drop by" the forum soon to say hi!
Since I'm also battling ovarian cancer, I feel such a deep connection to you. You are clearly one incredibly strong and brave soul, but just know that if you ever need advice, support, or even just a simple... hug, I'm right here.

Hey everyone, sending big love to all of you, especially Angela Wright 😉

My mom just finished two sessions of brachytherapy followed by a cycle of 10 smaller ones. She’s got a follow-up appointment in a week, and then we'll finally know what the next steps are. It might sound like a cliché, but you really have to hold onto faith and the will to fight—not just for the patient, but for all of us who are feeling everything they feel.

Right now, she’s doing okay for the most part, though she’s dealing with some pretty intense pain and trouble swallowing, which makes eating difficult.

I’m really hoping and praying this is just a temporary phase. Even her doctor mentioned that these side effects could actually be a positive sign that the radiation is doing its job.

It’s so important to stay strong and be that rock for our loved ones during times like this. 🙂

Here is a wonderful song to lift your spirits. Stay brave. 😉 🙂

Angela Wright said:My gogo is actually heading over to the DMV during his lunch break today to drop off those registration papers👍 Hopefully we have everything in order and won't run into any unnecessary hurdles🙂

Hang in there and stay strong... I know exactly how exhausting this can be🙄 I think even toward the end, I would have lost my patience with mom if I had to spend an hour and a half feeding her, only to have her spit food all over the TV at least a hundred times. The worst part was the crushing guilt that followed afterward. Even now, thinking back on it feels quite heavy...😢
It is all just a natural psychological response because, deep down, no matter how much we consciously accept the illness, our subconscious still perceives them as the person they used to be. It is vital to remain steadfast...

I really hope everything went smoothly!!! Please let us know how it went😍

I was wondering if anyone here has experience using pentostatin and might be able to share what the typical cost looks like. This is quite urgent for us. Additionally, if you have used it personally, could you explain the administration process? My father is battling chronic lymphocytic leukemia, and we are currently in the middle of fundraising to cover the cost of this medication.

Nancy Hernandez43 said:I really hope everything went smoothly!!! Let me know how it turned out😍

It went about as well as you'd expect—they basically showed up just to kiss the doorframe, since the crew is only pulling shifts on Monday, Wednesday, and Friday, probably so they don't accidentally work too hard.🙄
Anyway, they’re headed back out tomorrow, so we'll see what happens then.😉

gentlemoose62 said:Yeah, I was actually wondering where everyone went too!

So, I’m going to step up and ask for all your prayers and good vibes this time around because I have to go in for a breast biopsy.
I'll admit I'm feeling a little bit anxious about it, but I'm trying my best to stay positive and trust that everything is going to turn out fine! Honestly, after dealing with ovarian cancer, this is really the last thing I need on my plate right now.
I'll be sure to check back in once the biopsy results come through.

You are absolutely in our thoughts and prayers, and we are all sending so much positive energy your way!
It’s all going to be okay, sweetie, and please make sure to let us know the news so we can all celebrate together.
Stay strong!

Hey everyone. Has anyone here actually dealt with treating post-radiation necrosis? I’ve been doing some reading on Hyperbaric oxygen therapy lately. From what I gather, it involves breathing oxygen under specific pressure levels for set intervals of time. I was wondering if there are any facilities offering this kind of treatment here in the States, or maybe somewhere relatively close by...

Elizabeth Diaz60 said:Hey everyone! Has anyone dealt with radiation necrosis before? I was reading up on Hyperbaric oxygen therapy—it sounds like breathing oxygen under pressure for set periods. Does anyone know if there are clinics like that here in the States or maybe somewhere nearby...

Until someone jumps in with specifics, it sounded to me like you might be looking for hyperbaric chambers? We definitely have those available in the US, so maybe check around locally!
Good luck!

Alright folks, the paperwork is officially filed. Now we just sit tight for about a month and see if they actually approve us or leave us hanging.😉

Hey everyone!
I’ve got quite a bit of news to share—things are looking, well, complicated, I guess... Regarding the chemo, the good news is that it actually hit the targets in my lungs, but it didn't do much for the stuff in my pelvis (since I was already radiated). To make matters worse, because it's pretty hard on the kidneys, my right kidney took a hit too. Because of that, the medical board decided I can't do any more IV chemo; they're switching me to oral Endoxan instead. At first, I honestly thought they were giving up on me—really, I did—but after sleeping on it, I realized I just have to keep pushing forward. So, I went to see my surgeon to talk about trying to surgically remove those pelvic masses, and he actually agreed! So now, I'm just in this waiting game until the surgery. Since Christmas is right around the corner, I'm kind of hoping a successful surgery will be my little gift from God for the holidays. Anyway, that's all from me for now... I'll check back in when I have more updates. And seriously, THANK YOU all for the support.
Grace Fowler

Grace Fowler said:Hey everyone!
I have quite a few updates, so, things are looking... well, complicated. Regarding chemo, I had a good response for the spots in my lungs, but it didn't work for the pelvic area (since I was already radiated). Plus, because it’s pretty hard on the kidneys, they actually damaged my right kidney, so the medical board decided I can't get IV chemo anymore—only oral Endoxan. At first, I felt like they were giving up on me, but after sleeping on it, I realized I have to keep pushing forward! I went to consult with my surgeon about trying to surgically remove those pelvic masses, and he's actually on board. So now, I'm just waiting for surgery day. Since Christmas is coming up, I’m really hoping a successful surgery will be my gift from God for the holidays. That's all for now... I'll update you guys soon, and THANK YOU all for the support.
Dina

So glad you checked in! I am especially happy you're going for surgery, because, in my humble opinion, that's the only truly radical way to handle this. I've always been a pro-surgery person—it's the one thing I don't fear. My last surgery for a recurring lymph node is what actually allowed me to hit this 4-year remission, though obviously with chemo afterward too.
Just BELIEVE that God will grant you that gift, and know we are still right here with you!👍 👍 👍

Reading through your posts, I just wanted to say I really admire how much grit and heart you're showing. You’ve got a level of courage that’s honestly pretty rare, and I’m rooting for you to find the strength needed to tackle everything coming your way. I truly believe you’re going to come out on top because you deserve nothing less. Just lean on Him and His love, 🙂 let that be what carries you through the tough stretches. We're keeping you in our thoughts and prayers, 🙂

gentlemoose62 said:I’m so glad you reached out! Honestly, I think you making the call to go through with surgery is the best move—from my perspective, at least, it’s the only way to actually get aggressive with this thing. I've always been a proponent of surgical intervention; it’s not something that scares me one bit. In my case, having that last surgery to deal with a recurring lymph node was exactly what paved the way for this remission I've enjoyed for over four years—though, obviously, I had to follow it up with chemo to seal the deal.
Just TRUST that God will see you through this, and know that we are all standing right here with you.👍 👍 👍

Hang in there! It’s going to work out, just watch. Once you're on the other side of this, I really hope you'll come back to the site and our support group to share your story and help others find their footing.
Sending love, you lioness!🙂

Elizabeth Diaz60 said:Hey everyone! Has anyone dealt with post-radiation necrosis before? I was reading up on Hyperbaric oxygen therapy—basically breathing oxygen under pressure for set intervals. Just wondering if there are any clinics doing this here in the States or somewhere nearby...

There are hyperbaric chambers in Miami, San Francisco, and San Diego (maybe a few other spots too). Not sure if they treat anything besides diving issues, though. If you can't get a straight answer locally about centers in neighboring states, check out www.ddrc.org (Divers Alert Network) over in Plymouth; they might have a directory of similar facilities.

Angela Wright said:Well, everyone, the paperwork has officially been filed... now we just have to sit tight for about a month to find out if they actually approve us or leave us hanging.😉

Only a month? I am counting down the days until that moment finally arrives... Thank you so much for all your hard work, I truly admire your dedication. Kisses.😍

Grace Fowler said:Hello, my dear friends!
I have quite a bit of news to share; I finally received my latest lab results and the situation is... let's call it complicated... Regarding the chemo, there was a positive response regarding the spots in my lungs, though unfortunately, it didn't work on the pelvic area since I had already undergone radiation. Furthermore, because the treatment is quite nephrotoxic, it has also impacted my right kidney, leading the medical board to decide that I can no longer receive IV chemotherapy and must switch solely to oral Endoxan. At first, I felt as though they were giving up on me, but after sleeping on it, I decided that I simply must push forward, so I went to consult with my surgeon about attempting to surgically remove those masses in the pelvis, and he has agreed. Thus, I find myself in this waiting period before surgery. It is true that Christmas is approaching, so I am choosing to believe that a successful operation will be my gift from God for Christmas... That is all from me for now... I will reach out again once I have more updates, and THANK YOU all for your support.
Dina

It is truly wonderful to hear about your strength despite these ambiguous results... please persist, because you possess both the capability and the will to do so! And that Christmas gift will surely come to pass! Stay strong and don't give in... kisses

gentlemoose62 said:I am truly glad you reached out... particularly because you are opting for surgery, which, from my rather amateur perspective, seems to be the only truly radical solution available... I have always been an advocate for surgical intervention; it is certainly not something I fear... In my own case, it was the last surgery to address a recurrence in a lymph node that allowed me to achieve this remission of over four years... though, of course, that was followed by chemotherapy.
Just believe that God will grant you that gift, and please know we are all still standing right here beside you...👍 👍 👍

Mom is actually being prepped for surgery at this very moment... I am not entirely certain of the scale, but there is a palpable, visible fear regarding the possibility of a recurrence... her recovery is only just beginning, and as the scheduled follow-up approaches, the tension is becoming quite heavy... I intend to be by her side when she receives the results, if only to prevent her from collapsing once again...

Stay strong and continue to show that bravery...

Grace Fowler said:I guess I’m just looking at a successful surgery as my little gift from God for Christmas. That's all I can ask for... Dina

🙂
Stay strong, dear Dina. I'm rooting for you and wishing you nothing but the best!