Support for families dealing with cancer and other serious illnesses (Part II)

My dear friends, I wanted to check in and let you know that Dad remains stable. He’s picking up new words every single day now, and he has even started lifting his right arm and leg.
He is handling the treatment remarkably well, though perhaps it is still a bit premature to get too carried away with excitement—we have to remember that the side effects from radiation often don't manifest until later on.

Jesse Baker79, how is your husband doing? Is there any news at all?
Next week, I’m attending a lecture regarding clinical trials, and I expect they will be discussing DCVAX, which I assume you are already familiar with. Could this be our breakthrough? The trials are already quite advanced, but I am uncertain how much longer it will take before it becomes part of a standard protocol.

Grace Ross20 said:Hey everyone, just wanted to check in. Dad is still holding steady; he’s picking up new words every day now and is actually lifting his right arm and leg.
He’s handling the treatment well, though I’m trying not to get ahead of myself with too much excitement—radiation side effects usually don't show their face until later on.

Contina, how is your husband doing? Any news?
I’m heading to a lecture on clinical trials next week, so they’ll likely bring up DCVAX; I assume you've already looked into it. Could this be our big break? The trials are pretty advanced, but I have no idea how long it takes to actually become part of a standard protocol.

Back when I was posting in the Glioblastoma thread, I mentioned DCVAX while it was still in the in vivo stage. So, they really have moved into clinical studies... that's great news.
To try and get into a test group, you have to submit an application directly to the clinic running the study and see what their specific candidacy requirements are.
From what I recall, it’s an immunotherapy made from the tumor tissue itself. Now, I can't remember if a patient has to have surgery first or if they can use something from a biopsy... I'm not entirely sure.
I did a quick Google search, and it looks like the only studies currently in the US and Europe are in England and Germany.
The one in Germany isn't recruiting anymore, and looking at their criteria, they require the patient to have had surgery since they need the actual tissue to create the preparation.
https://clinicaltrials.gov/ct2/show/...EU%3ADE&rank=1

Regarding the protocols, the drug has to prove it's more effective than the current standard of care, which requires more randomized studies involving larger groups of people. If everything lines up, the pharma company applies for FDA registration, and then the new protocols are officially introduced.

By the way, there are currently 40 GBM studies actively recruiting.
http://www.clinicaltrials.gov/ct2/re...toma&recr=Open
This website always provides the most reliable data on available studies for all possible diagnoses, along with precise details ranging from how to apply to the specific requirements, obligations, and benefits.

It’s a beautiful, sunny Sunday, so I thought I’d take a moment to write a little update. 🙂

Two months ago, Dad was diagnosed with an inoperable Grade 4 Glioblastoma.
After quite a long struggle and several arguments with the Mayo Clinic, he finally arrived at the hospital to begin treatment two weeks ago.

At that point, his condition was devastating. He was immobile, silent, completely disoriented, coughing, and struggling just to breathe. I honestly thought it was the end. I spent the entire night in pure agony.

Now, two weeks later, there is a visible improvement, even though the doctor told me that nothing life-altering is actually going to change.
He’s eating quite a lot, he’s laughing, and every day he manages to say a new word. We’ve been practicing counting together and naming the days of the week. Little by little, he is lifting his right arm and leg—which had been paralyzed because the tumor is on the left side of his brain.
He is tolerating the chemotherapy and radiation remarkably well; he isn't vomiting, he doesn't feel nauseous, and he hasn't lost his hair.
His biggest struggle was accepting adult diapers; he kept pulling them off and wetting the bed. They have since inserted a catheter, which has made things much calmer for him. 🙂
It’s hard for him to deal with the loss of mobility, but I keep telling him that he will walk again—reminding him that it won't happen overnight, of course.
Who knows? Perhaps I am telling him the truth, or perhaps I am unconsciously lying to him.

For me, the most important thing is seeing the smile on his face, watching how sweetly he eats a pear when I bring him one, and seeing his joy when I tell him we’ll go walking along the coast again—his favorite place in the whole world.

When the diagnosis first came, every doctor told me to prepare for the worst. Mom was already making arrangements for a black funeral service, but I told her I didn't want to hear any of it. I told her I didn't care what anyone else had to say; those aren't helpful pieces of advice, they're just people wallowing and complaining.

And when Dad was at his absolute worst—lying there silent and motionless, staring blankly at the ceiling—when the doctor told me it was over, I simply couldn't believe it.
I would cry out in the hallway, but the moment I stepped into his room, I would wipe my tears away and smile like a happy child. I could feel how much that meant to him. I gave him strength.

Please, stay strong for them. It truly means everything.

Enjoy this lovely autumn Sunday. Sending strength to you all. 🙂

Hey everyone

I’ve been scrolling through most of this thread, but I’ve got a question.
My mom has Glioblastoma, and she’s almost done with her three-week stretch of radiation and chemo. They actually had to cut the treatment short because she was in such bad shape when she checked into the hospital.

The doctor isn't around, so I’m basically flying blind here—does anyone know what comes next? Like, how does the therapy continue from here, and what's the actual format she'll be getting since she just spent time in the hospital?

Thanks so much

Brenda Mendoza57 said:Hey everyone

I’ve been reading through most of this thread, but I have a question.
My mom has glioblastoma and she’s about to wrap up three weeks of radiation and chemo. They actually cut her treatment short because she was admitted to the hospital in pretty rough shape.

The doctor isn't available right now, so I’m stuck wondering what comes next. How does the therapy continue from here, and how will she receive it since she just spent time in the hospital?

Thanks so much

They won't start anything else until her general condition improves. They’ll run a follow-up MRI once this round is done to see if there’s any improvement or at least some stability in the tumor. Based on those results, they'll decide on the next steps. If everything goes according to plan, she'll move on to five cycles of Temodar, which she can take at home. She'll just need to head into the outpatient clinic before each cycle for blood work and a quick check-up.

Is there actually a protocol here in the States for switching things up if Temodar just isn't doing the job?
I’ve been seeing that Avastin is available in other countries...

My mom just got her head CT results back today. To put it bluntly, they found four distinct lesions. Her primary care physician is convinced they're metastases...

boldridge3 said:Mom CT scan results came back today. To put it briefly, they found four distinct lesions. Her primary care physician is suggesting they are metastases...

I am so incredibly sorry to hear that. 😢 Where was the primary tumor located?

Grace Ross20 said:I am truly sorry to hear that. 😢 Where is the primary tumor located?

It’s small cell lung cancer. Honestly, fighting this feels like a lost cause, yet the results from just two weeks ago were nothing short of miraculous; everything had been going perfectly throughout this nine-month battle. It is the ultimate cruelty of life—just when you think you've finally turned the corner and gained momentum, metastases appear out of nowhere, all without any major warning signs other than her losing sensation in two fingers on her hand.

Brenda Mendoza57 said:Is there an alternative treatment protocol used here in the States if Temodar stops working?
I noticed Avastin is available in other countries.

A mix of Vincristine and CCNU.
Avastin has shown some effectiveness, but I believe it’s typically reserved for third-line treatment.
The harsh reality is that in about 90% of cases, once a patient relapses on Temodar, they just aren't strong enough to handle a second line of treatment.
When it comes to GBM, the gold standard is surgery—getting in there and re-operating every single time there's a sign of recurrence. It's the only way people actually manage to beat the median survival rates.

boldridge3 said:Mom's head CT results came back today. To make a long story short, they found four distinct lesions. Her primary care physician is telling us they're metastases...

They’ll likely jump straight into cranial radiation. When you're dealing with small cell lung cancer, those brain metastases are usually incredibly sensitive to radiation therapy.
I really, truly wanted to believe it wasn't a metastasis, but this damn small cell cancer just loves to migrate to the brain. 😔
Make sure you get an abdominal ultrasound done too; more often than not, it hits the liver before it ever reaches the brain.

Angela Wright said:They’ll likely jump straight to cranial radiation. When you're dealing with small cell lung cancer that has metastasized to the brain, those microcellular clusters are notoriously sensitive to radiation treatment.
I was truly holding onto hope, praying it hadn't spread, but this damn small cell cancer is aggressive enough to target the brain in a heartbeat. ½í¸”
Make sure you get an abdominal ultrasound scheduled too, because more often than not, it hits the liver before making its way to the brain.

The follow-up for her lungs is set for November 16th, but I'm calling her doctor tomorrow to see if they can squeeze her in sooner while she's still feeling strong; waiting until mid-November feels like an eternity when you're watching this happen.

boldridge3 said:The follow-up for her lungs isn't scheduled until November 16th, but I’m calling her doctor tomorrow to see if they can squeeze her in sooner. She feels great right now, and waiting until mid-November just feels like too much wasted time.

You absolutely should! She needs to get started on that cranial radiation ASAP.

I’ve walked this same path alongside my partner—the very one you all are navigating right now. He passed away just three weeks ago after battling a brain tumor. I know this community exists, but I honestly never had the courage to dive into these threads until now. I held onto such a desperate, flickering hope for his recovery; even with a diagnosis that heavy, watching him face everything with such unwavering bravery and optimism gave me a tiny shred of hope to cling to.

Now that he’s gone... I’m just taking things one day at a time, though the void he left is immense. I miss him terribly—truly, deeply—and that ache seems to grow more intense with every passing day.

My heart goes out to every single one of you 🙂

Damn. I'm sorry.

Ashley Reed98 said:I went through exactly what you all are going through with my boyfriend. He passed away three weeks ago—brain tumor. I know this topic exists here, but I never quite had the courage to actually read it. Even with such a heavy diagnosis, I kept holding onto this tiny sliver of hope because of how bravely he faced everything; he was always such an optimist.

Now that he’s gone... I’m just taking it one day at a time, but I miss him. I miss him so incredibly much, and it feels heavier with every passing day.

My heart goes out to all of you. 🙂

Daniel Ramos12, dear, please accept my deepest condolences. 😢
Whenever you feel strong enough, it would mean a lot to us if you could share a little bit about his diagnosis and the treatments he underwent.

Ashley Reed98 said:My boyfriend went through exactly what you guys are going through right now. He passed away three weeks ago... brain tumor. I know this thread exists, but I honestly couldn't bring myself to read it until now. I kept holding onto this tiny shred of hope that he’d pull through. Even with such a brutal diagnosis, seeing how brave he was, how he stayed so positive through all of it... it just made me believe.

Now that he's gone... I'm just taking it one day at a time. But I miss him. So much. Every single day, the ache just gets heavier.

I'm thinking of all of you. 🙂

Please accept my deepest condolences. I am so, so sorry.

I haven't posted much since my mom passed away, but I'm here every day reading everything. To everyone fighting right now: I'm rooting for you. Wishing you strength and success. Just hang in there and stay brave.
Best to everyone,

Ashley Reed98 said:My boyfriend went through exactly what you all are facing right now. He passed away three weeks ago—brain tumor. I knew this thread existed, but I honestly couldn't bring myself to read it until now. I kept holding onto this tiny sliver of hope for his recovery; even with such a brutal diagnosis, seeing how bravely he fought everything, always staying optimistic... it gave me something to cling to.

Now that he’s gone... I’m just taking it one day at a time, but the void he left is massive. I miss him so much. Every single day, that ache just gets deeper.

Thinking of all of you. 🙂

I am so sorry, honey. Let him rest in peace, and try to move forward with your head held high, carrying his memory in your heart. I'm certain that's exactly what he would want for you.

Here I am again. My mother is scheduled to start radiation on November 21st, and honestly, things aren't looking great. She’s starting to lose some strength in her arms and legs... though, thank God, she isn't experiencing any actual pain or neurological issues just yet. As far as medication goes, they have her on Decortin 40 mg in the morning along with gastroprotection and Apazolom20 mg. She'll stay on that through the duration of the treatment, and once we finish, the plan is to taper the Decortin down by 5mg increments until she's off it completely. From what I can gather, they've labeled this as palliative radiation, which leads me to believe I shouldn't be holding out much hope for a miracle, right?

Does anyone have a good physical therapist they can recommend, and what kind of experiences have you all had with them?
So, my Dad just finished up 15 days of chemo and radiation, and now he's stuck in a bit of a holding pattern for about a month before we can jump back into the next phase of treatment.
His speech is starting to come back to him a little, and his right hand too. However, since he’s been bedridden and immobile for a full month now, his muscles have become incredibly weak.
I honestly believe he could be walking again if a real specialist really got to work on him—do you think that's a realistic possibility?