Resources and support for families dealing with cancer and serious illness

Hey there,
here’s my update:
Mom took a massive hit last week. She was totally lost, drifting in and out of time and space, her balance was shot, and she was talking so slow... Honestly, I was already panicking that she was going to end up bedridden. I rushed her to the hospital, and they bumped up her dose of Dexamethasone, which helped things stabilize a bit 👍 . How long this is going to hold? Who knows. I can't even bring myself to think about it... We haven't had a CT scan since we started therapy back in May, so we're basically flying blind regarding what's actually happening in her head 😳
Hang in there, everyone—especially Anaxy, who had a really rough week last week

Angela Wright said:slyseal28, that's great—give my best to ljudina👍. We haven't heard anything regarding sarcomas lately. I assume you're in touch with them through the website. How are things looking on their end? How many more rounds of chemo do they have left?

They are doing wonderful. We've been staying in contact via the site, working away at it diligently; though, I haven't quite finished the final design yet since I need the actual copy first to make sure everything is properly linked and organized. If you have a moment, take a look at the site—I've posted some of the text... comments and critiques are more than welcome 🙂

By the way, we actually met them in person. She has just one more round of chemotherapy to go and then she's done. She's holding up well—actually, better than well! 👍

My golub starts his second cycle tomorrow. They sent us home today, which wasn't too hard on him.

bluewalker30 said:I’d really love to share some of these pieces with you all...

These writings are absolutely beautiful. If you don't mind me asking, where do you find them?

A few dear friends and I are actually collaborating on a website dedicated to malignant diseases. The whole idea is to create a reliable information hub—a guide and a support system for patients, their families, and their loved ones. We're also planning to host a forum where people can exchange experiences and everything else.

The kind of pieces you've written would be such a decisive asset for the support section we're building on the site. Would you mind if we featured them there?

slyseal28 said:Your writing is honestly beautiful. If you don't mind me asking, where do you find all this stuff?

A few dear friends and I are putting together a website focused on cancer. The idea is to create a reliable information hub—a guide and a support system for patients, their families, and friends. We’re also planning to host a forum so people can actually swap stories and experiences.

The kind of pieces you’ve written would be perfect for the support section we're building. Would you be okay if we featured them there?

NOPE! Quite the opposite—I want everyone to see them. I sent you a message on my blog.
It's just stuff I come across online, though I haven't posted anything new in quite a while... ☕ Feel free to take whatever you think works.

There's a new drug hitting the market for women dealing with advanced-stage breast cancer and metastatic changes. It’s currently only available here in the United States, and we're looking at a price tag of roughly $3,000.

About GlaxoSmithKline

GlaxoSmithKline

About Tykerb

Tykerb is a small molecule taken orally that works by inhibiting the tyrosine kinase components of the EGFR (ErbB1) and HER2 (ErbB2) receptors. Basically, the Stimulation of EGFR (ErbB1) and HER2 (ErbB2) drives cell growth and various stages of how a tumor spreads and invades. Overexpression of receptors has been noted in several different human tumors and is linked to a tougher prognosis and lower survival rates.

The Encounter

We crossed paths
somewhere
between worlds
in a narrow corridor
where
destinies collide
during a moment
when the universe falls silent
so that
the whispers of souls can finally be heard

J. Letic

bluewalker30 said:There is this new medication for women fighting advanced-stage breast cancer with metastatic changes, and it’s actually available right here in the United States, though the price tag is sitting around $3,000.

About GlaxoSmithKline

GlaxoSmithKline

About Tykerb

Tykerb is a small molecule taken orally that works by inhibiting the tyrosine kinase parts of the EGFR (ErbB1) and HER2 (ErbB2) receptors. When there is Stimulation of EGFR (ErbB1) and HER2 (ErbB2), it leads to cell proliferation and various processes that drive tumor growth, invasion, and metastasis. It turns out that Overexpression of receptors happens in many different human tumors and is linked to a tougher prognosis and lower survival rates.

WHERE ON EARTH DID YOU FIND ALL THIS INFO?!

Carol Sanchez2 said:WHERE ON EARTH DID YOU FIND THIS DATA?

That news is ancient history. Just Google Tykerb and you'll find everything you need.

Carol Sanchez2 said:WHERE DID YOU FIND THIS DATA?

CNN covered it, and I pulled the specifics from various sites online. I even caught the pricing details on some news programs... that's how I tracked it all down.

FDA approves Tykerb (lapatinib) in combination with Xeloda (capecitabine) for the treatment of advanced or metastatic breast cancer in women who have progressed on prior therapy

GlaxoSmithKline’s New Breast Cancer Drug May Give Women more Options Philadelphia

PHILADELPHIA, PA, March 13, 2007 – GlaxoSmithKline plc [NYSE: GSK] announced today that the FDA approved Tykerb (lapatinib), in combination with Xeloda (capecitabine), for treating patients with advanced or metastatic breast cancer whose tumors show overexpression of receptors and who have already undergone therapies like anthracyclines, taxanes, and trastuzumab. This marks the first targeted, once-daily oral option available for this group. Tykerb was granted Priority Review by the FDA in November 2006.

"Tykerb is a significant breakthrough for women with advanced HER2 (ErbB2) positive breast cancer. The data clearly show that this small molecule, oral, targeted agent, in combination with capecitabine, is effective for women whose disease has progressed on previous therapies, including anthracyclines, taxanes and trastuzumab," said Paolo Paoletti, MD, senior Vice President of Oncology at GSK. "The approval of Tykerb demonstrates our R&D organization’s strong commitment to the discovery and development of novel cancer treatments. We are dedicated to Tykerb development in a variety of settings including adjuvant breast cancer as well as in other solid tumor types.”

Angela Wright said:That’s old news. Just Google Tykerb and you'll find everything you need.

It doesn't really matter if the info is "old" or not—what matters is whether it's accessible. A lot of people haven't heard about it yet. My rule is simple: if I think something might offer someone a bit of help or hope, I’m going to share it, regardless of how long ago it was reported. I expect the same from everyone else here, too. Small details get overlooked, forgotten, or brushed aside all the time, even when they're actually vital. For instance, in the beginning, I used to mix my juices together. I had no idea that waiting two hours between them was actually the best way to go... something I eventually learned from an oncologist who specializes in nutrition.

bluewalker30 said:It doesn't matter if the info is old or not; what matters is whether it's available. A lot of people haven't heard it. Anything I think might offer someone help or hope, I'm going to post regardless of how old the news is. That’s the same level of support I expect from other members here, because so many things get overlooked, forgotten, or ignored when they could actually be life-saving. For instance, in the beginning, I was mixing juices together. I had no idea you should really wait two hours between them... I learned that from an oncologist who specializes in nutrition.

Oh, come on, don't get worked up about it.🙂 Here is a link to a thread on this very topic from back in March.😉

Angela Wright said:Oh, obviously. Don't get worked up about it.🙂 Here is a link to a thread from back in March discussing this very topic.😉

🙂 Anger? Please. I don't have the time for that... besides, getting angry just gives you wrinkles.😉

bluewalker30 said:Honestly, it doesn't even matter if the information is old or not; what matters is whether it's accessible! So many people haven't heard about certain things, and I feel like if I think something might offer someone a bit of help or a glimmer of hope, I’m just going to share it regardless of how long ago it was posted. That’s really what I hope to find here from all of you too, because so many little details get overlooked, forgotten, or just brushed aside, yet they can be absolutely precious! For instance, when I first started out, I was mixing juices together, totally unaware that it’s actually much better to wait two hours between them... I actually learned that directly from an oncologist who specializes in nutrition.

Does anyone know where I could find that specific oncologist or pharmacist who specializes in nutrition?

It’s my first time posting here, so I’m hoping someone might be able to offer some perspective or advice. My mother underwent two brain tumor surgeries about two years ago (back in July 2005 and October 2005). That first pathology report identified an Oligodendroglioma, while the second indicated a Grade II-III Mixed Glioma located in the right temporal region. The surgeons managed to reduce the tumor mass as much as possible through surgery, and she followed that up with radiation therapy. By May 2006, she started chemotherapy using CCNU tablets. For a while there, things seemed okay; her quality of life was relatively good, and the CT scans weren't showing any signs of the tumor returning. Then, in May 2007, everything just took a devastating turn. She became immobile in her left leg and arm. Subsequent CT and MRI scans revealed a new growth in a different location. The neurosurgeon told us it isn't operable due to its position, and the oncologist won't consider further radiation because not enough time has passed since the last round. The results from the stereotactic biopsy came back stating: "Most likely post-radiation necrosis, though rare tumor cells are sporadically found in the examined samples, reflecting deep infiltration of the underlying glioma process." To make matters even worse, we're now dealing with a thrombosis in her left leg, which kept her hospitalized for three and a half weeks. She’s home now, but her condition is worse than ever. The paralysis in her leg and arm has progressed, and most of the time, she seems lost, drifting in and out of space and time. There's a chance her oncologist might try another round of chemotherapy, but honestly, it feels like the doctors have already written her off. As a family, we're struggling to accept that kind of prognosis; we want to do everything humanly possible to give her a fighting chance. If anyone has any insight or advice, I would truly appreciate it. Sending my best wishes for healing to everyone reading this or participating in the forum.

Elizabeth Diaz60 said:It's my first time on this forum. I'm asking for some advice. My mom had brain tumor surgery twice about two years ago (07/2005 and 10/2005). The first pathology report showed an Oligodendroglioma, but the second indicated a Grade II-III Mixed Glioma located in the right temporal region. They managed to reduce the tumor as much as possible through surgery. Following that, she underwent radiation therapy. In 05/2006, she started chemotherapy with CCNU tablets. During that period, her quality of life was relatively good, and CT scans didn't show any signs of recurrence. However, things took a dramatic turn in 05/2007. Mom is now immobile in her left leg and arm. CT and MRI scans show a new growth in a different location. The neurosurgeon said it isn't operable due to its position, and the oncologist says further radiation isn't an option because not enough time has passed since the last round. The stereotactic biopsy results state: “Most likely post-radiation necrosis accompanied by sporadic rare tumor cells found in the examined samples, reflecting deep infiltration of the underlying glioma process.” The situation has become even more complicated due to thrombosis in her left leg, which kept her in the hospital for three and a half weeks. She's home now, but her condition is worse than ever. Her leg and arm are even less mobile, and she spends much of her time disoriented in space and time. There's a possibility her oncologist might introduce another type of chemotherapy. Generally speaking, the doctors have basically given up on her. As a family, we find it incredibly hard to accept these prognoses and want to do everything possible to give her a fighting chance. Please, if anyone can offer any advice, I would appreciate it. Sending my best wishes for healing to everyone here, whether you are posting or just reading.

Man, she is really going through the wringer.😳
That Mixed Glioma sounds like a tumor made up of all sorts of different cells—almost like a transitional form.
I honestly don't feel smart enough to give specific medical advice. Usually, these inoperable cases are handled with Gamma Knife, but it sounds like that's off the table right now because of the necrosis and swelling. Is she taking Dexamethasone? It can cause some systemic swelling/bloating, but at least it reduces that brain swelling, which helps lessen those neurological outbursts.
I'm not sure if Temodal can be used for a Mixed Glioma or if it's strictly for Astrocytoma? You should look into that.
My only real advice is to get a second opinion. Where did she have her surgery? brightgardener8 once emailed her husband's records to Houston Oncology and received a very detailed response from Dr. Yang, suggesting there were still more options to explore.
Regarding the thrombosis—my mom was right on the edge of that too. I actually asked if she could take something like an aspirin protect, and they told us, "Actually, yes, aspirin protect is fine." Of course, none of the doctors thought to suggest it; I just happened to know that people dealing with thrombosis and vascular issues need blood thinners to prevent clotting. Ask the doctors about that. Personally, I think she should be on it.
If she’s mostly bedridden, try to borrow a hospital bed with an anti-decubitus mattress from a local nursing home or medical supply shop. If she develops a wound on her leg on top of that thrombosis, it could be a disaster. I knew someone on a forum whose father-in-law ended up dying from gangrene rather than the tumor because of poor pressure management. You can usually rent those beds for a symbolic monthly fee, maybe around $200.$100
God, I know how you feel. That sense of helplessness and having to face reality is the absolute worst. You have to prepare yourselves for every possibility because there isn't much choice. Just focus on maximizing her quality of life. Make sure she has excellent care and is surrounded by people who love her. That is the most important thing you can provide for her.
Hang in there, everyone, and don't back down—the fight isn't over yet. Don't go jumping to the worst-case scenario just yet! If things actually hit the fan, we'll have plenty of time for the mourning and the tears later. Right now, there's still a massive amount of work left to be done.

Thanks, Angela Wright. A Mixed Glioma is basically this complex blend of an Oligodendroglioma and an Astrocytoma. While she was at home, she wasn't taking Dexamethasone, but rather Medrol instead. During her most recent hospital stay, though, they actually discontinued the Medrol entirely. I can't help but wonder if that sense of confusion or being "lost" she's experiencing might actually be a side effect of that change? My oncologist mentioned that Temodal is typically used to treat Glioblastoma and Anaplastic Astrocytoma. Mom had her surgery in Philadelphia, which is also where her oncologist is located. She’s surrounded by people who truly love her and are looking after her.

Angela Wright, what’s the deal with your mom? Are they still pushing those massive doses of dexamethasone on her? Over here, things are... well, unpredictable. That 8 mg dose worked wonders from Thursday through Monday, but now we're starting to see things slip a little again. 😢 We’ve got another routine checkup at the hospital this Friday, so we'll see what the doctors decide to do about it.

Elizabeth Diaz60 said:Thanks, Angela Wright. A Mixed Glioma is essentially a blend of an Oligodendroglioma and an Astrocytoma. While she was at home, she wasn't taking dexamethasone; she was on Medrol instead. However, they stopped the Medrol during her last hospital stay. I honestly can't rule out the possibility that her confusion is actually a side effect of that switch. My oncologist mentioned that Temodal is typically used for Glioblastoma and anaplastic Astrocytoma. Mom had her surgery in Indianapolis, which is also where her oncologist is located. She’s surrounded by people who love her and are looking after her.

Look, someone should take her test results and head over to Washington, D.C., to get a second opinion from the neurosurgeons at the Mayo Clinic—maybe talk to Dr. Paladin, Melada, or Heinrich. I'm not saying the doctors in Indianapolis aren't skilled, but I firmly believe that more heads are better than one when you're dealing with this.
Medrol isn't exactly the gold standard for brain tumors. It just doesn't cut it like dexamethasone does. You should ask them about it. Personally, I think a dose of Mannitol might stabilize her, and then she could be maintained on dexamethasone. Generally speaking, everyone here who has been in this exact situation and spoke up followed that protocol and saw real improvement. My own mother did.

brightgardener8 said:Angela Wright, how is your mom doing? Are they still giving her those heavy doses of dexamethasone? Over here, things are... That 8 mg dose held steady from Thursday through Monday, but now we're starting to see a slight decline again. 😢 We have a follow-up appointment at the Mayo Clinic this Friday, so we'll see what the plan is.

Mom seems slightly better, so we've stopped the injections and moved back to pills. She’s started chewing a little again, but honestly, it’s just heartbreaking. It's bad.
Don't let your mom's recent dip get to you too much. It's just the way time works. I've noticed my own mom takes a visible turn for the worse every time the weather shifts, and I see others complaining about the exact same thing with their folks. My mom has been moaning for two days straight; I think she has a massive headache. Look, I've felt terrible these past two days myself—constant dizziness, just wanting to lie down and sleep—so imagine how they feel. You can only picture the chaos happening inside the brain when the pressure from edema and the tumor tries to balance out against external atmospheric pressure.😳
Ugh, I can't even stand thinking about the Mayo Clinic. Every time I see a hospital on TV, I get this knot in my stomach and start swallowing hard.

Angela Wright said:I mean, just imagine someone trying to rush all the way to Washington, D.C., to take those test results to the specialists at the Mayo Clinic to get a second opinion from one of their neurosurgeons—maybe Dr. Paladin, Melada, or Heinrich. It’s not that the doctors in Indianapolis aren't skilled enough, per se, but isn't it usually true that more brains are better than one when you're dealing with this kind of thing?
Medrol doesn't really do much for brain tumors, honestly. It just doesn't hit the mark the way dexamethasone does. You might want to ask them about it. Personally, I suspect a dose of Mannitol might stabilize her enough to get things moving, and then she could stay on dexamethasone to maintain that state. Most people who have found themselves in this exact position—and several have spoken up here—went through that specific protocol and saw real improvement. My own mother did.

She was actually at the Mayo Clinic back in July when Heinrich performed the biopsy. After that, they sent her off to follow up with her oncologist for the rest of the treatment plan. As for the dexamethasone, we'll try to get a hold of the oncologist to discuss it. I also can't help but feel that the weather seems to be playing a significant role in my mom's condition lately.
Angela, thank you so much for the advice and the support. Let me return the sentiment—despite everything she's going through, your mother is incredibly lucky to have you by her side.