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

Svekar started his sixth and final round of chemo today.
I told him that he needs to insist on two things: first, that his oncologist actually sees him personally, and second, that they run an abdominal ultrasound, a chest X-ray, or even a CT scan (the doctor mentioned at the last session that this was becoming necessary).
The mass on his abdomen is growing; it’s spreading toward his ribs and causing significant pain. He also mentioned a tightening sensation in his throat and occasional shortness of breath, especially when he tries to walk up the stairs.
I’m genuinely worried that everything might have spread to his lungs and the rest of his esophagus, and that he could end up suffocating—that it's all just slowly reaching its end.
If he won't take any action, I'll force him to go to a private clinic. He actually went to one last week, but the only private specialist available in Small Town, USA, ended up being part of the public system anyway.

I need to call him today to see if he's actually managed to get anything sorted out.

Hmm, what if there's fluid buildup in the abdomen and it's starting to hit the pleura? That should show up pretty clearly on an Ultrasound.
Did they end up doing one at the end?

We’re putting together a book featuring the writings and poems of our dear friend VedranST, who passed away after a five-year battle with colon cancer.
Many of you followed his journey right here on the forum—back in the old thread—and if you’d like to help us put this book together, whether by contributing financially or simply writing a few words about how he impacted your life, please reach out via the email address below.
I’m copying a message from the "Cancer Isn't the Dark" forum; the woman organizing the book is wonderful, so feel free to contact her directly.

"So far, eight people have written a tribute to Vedran. If anyone else wants to say something about him for the book, please let me know. I’m planning to wrap up the texts in a few days and send them to the printer—so if you want to join in, either by helping with costs or by providing a short note about Vedran, please email me at vesduj@gmail.com
thanks"

Read more: http://rak-nije-mrak.proboards.com/t...#ixzz3ecy0HKiG

Angela Wright said:Hmm, what if it's just ascites and it's starting to spread to the pleura? An ultrasound should show that pretty clearly.
Did they end up doing the ultrasound at the end?

No, they've put chemo on hold until we can get a follow-up appointment with the oncologist. That's happening today, so we'll know our next move after that.

The oncologist sent him in for a CT scan and some blood work. I didn't actually catch what she wrote in the report because he wouldn't let me read it.
Yesterday, my mother-in-law mentioned that he went to see the specialist with his referrals, and apparently, they told him that mass is a metastasis. They said the chemo didn't do its job, and now we’re waiting on the CT results to figure out how far it has spread and just how much time we actually have left.
He did get prescribed some patches for the pain, though, since that mass is causing him quite a bit of discomfort.
Do you think radiation might offer any relief at this stage, assuming chemo isn't really an option anymore? I'm worried he might be too weak for surgery as well, leaving us with nothing but palliative care.
What else can we do to make things easier for him?

Once things stabilize a bit and you feel a little stronger, there might be an option to use radiation to help manage the pain. It’s definitely worth bringing up with your oncologist to see if that’s a viable path for you.

Amanda Miller69 said:The oncologist sent him for a CT scan and blood work. I didn't see the specific results she wrote down because he wouldn't let me read them.
Yesterday, my father-in-law told me he went to pick up his referrals from the clinic, and they told him that the tumor is a metastasis. Apparently, the chemo didn't work, and now we have to wait for the CT scan to see how far it's spread and what kind of options we actually have left.
He did get some pain patches, though, because that mass is causing him a lot of pain.
Would radiation help at this stage just to provide some relief, assuming chemo isn't an option anymore? I'm terrified he might be too weak for surgery and that we'll be looking at nothing but palliative care.
How else can we make him more comfortable?

If he hasn't had radiation yet, I think palliative radiation could definitely help, though ideally, you'd follow that up with surgical removal if possible.
Damn it all... I am so incredibly sorry.😢

Here I am again, bringing some slightly different news today.
My fiancé had an abdominal CT scan, and it shows a metastasis on his liver—the largest one is about 20 mm.
There’s also a round lesion visible in the left adrenal gland, though it doesn't specify what it is.
Then it mentions enlarged lymph nodes, and there's a 35 mm metastatic deposit on the peritoneum just below the left diaphragm.

Everything else looks normal; the CT shows nothing on the pancreas, and his stomach and colon exams came back clear too.

The oncologist suggested we go ahead with a CT-guided liver biopsy before deciding on the next steps...

I’m honestly a little scared that things might take a turn for the worse while we wait for everything to play out... but we've already started working on boosting his immune system.

Ah, I don't know...

Angela Wright, what are your thoughts on this situation now?

Looking over these results, it seems like we might be looking at something other than pancreatic cancer, which is honestly such a huge relief. The next step should be getting a biopsy scheduled as soon as possible so the doctors can pinpoint exactly what kind of tumor we're dealing with. Once that's clear, the treatment plan can kick in. At this stage, moving quickly is really the most important thing.

Richard Sanders7 said:Based on this report, it doesn't look like pancreatic cancer after all, which is huge news. You really need to get a biopsy done ASAP to figure out exactly what kind of tumor we're dealing with. Once that's set, treatment starts. Speed is everything here.

Honestly, the pancreas would have been the absolute worst-case scenario.

Now I'm just torn—should I jump into some alternative stuff right away, or just wait for the final results?

Kimberly Nguyen70 said:that choosing the pancreas was the absolute worst move

Now I’m just stuck in this loop, wondering if I should jump on some alternative treatment right away or just sit tight until the final pathology report comes back.

Forget alternatives—just focus on boosting the immune system!!

The pathology report is going to provide the actual roadmap, telling us whether we're dealing with cancer at all, or maybe a sarcoma, or even a melanoma hiding somewhere on the skin without you even realizing it.
In certain cases, the primary tumor doesn't have to be massive before the metastases start running wild.
That adrenal gland looks highly suspicious to me; it's entirely possible everything started there, and we can pin that down easily by checking hormone levels. Besides, adrenal endocrine tumors are incredibly rare.
http://www.endocrineweb.com/conditio...adrenal-cancer
Even if it isn't pancreatic cancer, having a disease this widespread is a heavy situation. I'm crossing my fingers that they identify the primary site quickly so targeted therapy can actually begin.

Angela Wright said:There's no alternative, just boosting the immune system!!

The pathology report will provide guidance on whether we're actually dealing with carcinoma, a potential sarcoma, or maybe even a melanoma somewhere on the skin that hasn't been noticed yet.
In some cases, the primary tumor doesn't have to be large before metastases go crazy.
This adrenal gland looks very suspicious to me. It's possible everything started there, which should be easy to determine by checking hormone levels, among other things. Besides, an adrenal tumor is a very rare endocrine issue.
http://www.endocrineweb.com/conditio...adrenal-cancer
Regardless of whether this is lung cancer, a widespread disease like this is a serious situation. I'm keeping my fingers crossed that we identify the primary site quickly so targeted therapy can begin.

If there's a change in the adrenal gland, a chest CT should be done, because lung cancer often metastasizes to the adrenal glands. Another likely option is a benign change (an adrenal adenoma, which is also common), and the last thing we're thinking of is primary adrenal carcinoma, which is extremely rare.

Hello everyone! Since I'm new to this forum, I’m still figuring out the best way to navigate everything here... I am looking for some insight regarding my father. He was diagnosed with kidney cancer seven years ago, and while the tumor was successfully removed back then, we’ve hit a major setback recently. A few months ago, metastases appeared in his lungs and bones—specifically, there has been a pathological fracture in his femur. Currently, he is undergoing treatment with Sutent. He is actually starting his third cycle tomorrow, but he is struggling quite significantly with the side effects of these pills. I was wondering if anyone here has firsthand experience with Sutent? Did it prove effective for you or your loved ones? Any insights would be greatly appreciated. Thank you so much in advance!

Hello everyone,
My father was diagnosed with a malignant supraglottic tumor in mid-May, and it was surgically removed in early June. The surgeon didn't initially realize the full extent of the issue, so they ended up performing a partial laryngectomy—hopefully, it went well.
He’s scheduled for follow-up oncology appointments in mid-July, starting with a neck CT scan followed by chemoradiotherapy.
Before the surgery, he had all his tests done; at 63 years old, everything looked fine except for the larynx.
The issue is that even a month after the operation, he can barely swallow anything. He can taste some food, but liquids are impossible.
They removed his feeding tube this past Friday, so he likely got dehydrated, and then he developed a fever yesterday.
If anyone has dealt with something similar or knows how to help someone relearn how to swallow, please reach out.
Thanks!

Angela Wright said:It’s not an alternative, just about boosting the immune system!!

The pathology report will give us some actual direction—whether we’re looking at carcinoma, maybe a sarcoma, or even some melanoma on the skin that hasn't even been noticed yet.
Sometimes a primary tumor doesn't even have to be huge before the metastases go crazy.
This adrenal gland issue feels really suspicious to me, and it's possible everything started there; we should be able to figure that out pretty easily by checking hormone levels, among other things. Besides, adrenal endocrine tumors are super rare.
http://www.endocrineweb.com/conditio...adrenal-cancer
Even if it isn't stomach cancer, having the disease spread out like this is a pretty serious situation. I'm crossing my fingers that they can pinpoint the primary site quickly so we can jump straight into targeted therapy.

Thanks, I'll check back in once we get the biopsy results----hoping for the best, praying for some kind of miracle where it turns out it isn't cancer...

Kate Wells44 said:If there’s something going on with the adrenal gland, you really need to get a CT scan of the chest, since lung cancer frequently spreads to the adrenals. Another possibility is just a benign change—like an adrenal adenoma, which happens all the time—and the absolute last thing we're looking for is primary adrenal carcinoma, which is incredibly rare.

The chest X-ray came back clear... now we just wait to see what the biopsy shows. I'm really crossing my fingers for some good news...

Kevin Barnes6 said:Hey everyone,
My father was diagnosed with a malignant supraglottic tumor in mid-May, and he underwent surgery to have it removed in early June. The surgeon didn't fully grasp the extent of the issue at first, so they ended up performing a partial laryngectomy—let's just hope it was a success.
He’s scheduled for follow-up consultations with the oncologist in mid-July, starting with a CT scan of the neck, followed by chemoradiotherapy.

Before the surgery, he went through all the standard testing, and everything else looked fine aside from his larynx. He's 63.
The real issue is that even a month after the operation, he can barely swallow anything. He can manage a few bites of food, but liquids are impossible.
They removed his feeding tube this past Friday, so he likely got dehydrated, and then he ran a fever yesterday.
If anyone here has dealt with something similar or knows how to help someone relearn how to swallow, please reach out.
Thanks!

There is an association for people who have had laryngectomies; they are incredibly active and provide great support. Definitely get in touch with them—they'll give you firsthand advice and info.http://www.larynx-hr.org/

Hello everyone!
My mother-in-law's condition is steadily declining (GBM IV). Her sleep periods have become much longer, and she’s incredibly difficult to rouse, especially in the mornings; it usually takes her an hour or two just to settle in and realize where she actually is. Mentally, she's quite disoriented—her speech is fragmented, and she keeps repeating the same questions over and over. Sometimes it's like she snaps out of a dream, looking at us with total surprise, finally recognizing us, and then just breaking down in tears. She can't walk anymore; what passes for walking now is just tapping her feet in place for a few seconds before she simply collapses into a sitting position. When she sits on her left side, she leans heavily that way because she has zero control over that side of her body. She's also swollen and has gained weight, weighing about 200 lbs now, which makes moving her from one spot to another an absolute struggle. She’s taking Dex 4mg four times a day, along with two types of stomach medication, though she constantly complains of abdominal pain despite having no issues with gas, constipation, or hardness. Her legs are turning a dark, bluish-black color, so we massage her feet in a water massager and then apply baby cream to her feet and her entire body. We've started using adult diapers since she has lost bladder control. We are currently waiting for her 11th cycle of Temodar and are hoping to get her into a hospice facility. It's a bit of a challenge to arrange here, especially regarding the state-run hospice near the hospitals in the local area, which provides medical services and stays connected with the medical institutions if needed. I guess I wrote another long post. My question at the end—and honestly, what scares me most—is that discoloration of her feet; they look almost black. Could that be from sitting or lying down too much? We are drawing blood today to check everything, including her blood sugar. I really hope it isn't related to high glucose levels.😠

Alma, that’s just what happens when circulation goes south. You need to massage her legs using circular motions—start at the feet and work your way up toward the calves and knees. Grab some baby oil, or better yet, whip up a homemade lavender and rosemary oil for the massage. I used that myself and it made a world of difference. Just remember to focus more on soothing strokes rather than heavy pressure. These issues are typical side effects of Cushing syndrome caused by the steroids.
Regarding everything else, I already posted about it in the glioblastoma thread so I don't keep repeating myself.

Angela Wright said:Alma, that’s just due to poor circulation. Try massaging her legs using circular motions, starting from the feet and working your way up toward the calves and knees. Grab some baby oil, or better yet, a homemade lavender and rosemary oil for the massage. I’ve used that myself and it helped immensely. You should focus more on gentle stroking rather than heavy pressure. These are just side effects of Cushing syndrome caused by the steroids.
I already posted about everything else in the glioblastoma thread so I won't repeat myself here.

Thank you so much! I actually suspected that was the cause, but the discoloration really spooked me—though it did fade right after I massaged and rubbed the area. I already massage her whole body, just gently gliding over her skin and applying baby lotion, but I'll definitely pick up some oil. Thanks again.