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

Michelle Lewis67 said:Hi everyone,
I haven't had a chance to catch up on all the posts here—things are just too busy right now—but I was hoping to find someone who has dealt with multiple myeloma.
My dad was diagnosed four months ago. He’s already finished chemo and is currently gearing up for a transplant, so I’d really appreciate hearing from anyone who has been through this process.
Thanks in advance for any insight you can share.

It’s a rare and incredibly tricky diagnosis, and honestly, that’s about as much as I can say. I don't personally know anyone who has faced this directly.
Keeping my fingers crossed that everything goes exactly as planned for him.

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Angela Wright said:It’s handled on an individual basis, but always strictly within established protocols. They will give you the exact details.

Aside from fatigue and skin burns—similar to a severe sunburn—other significant side effects are quite rare. When dealing with brain radiation, there is a tendency for edema (swelling) to increase, which can lead to hair loss or headaches, but the therapy itself is designed to keep those symptoms under control. One critical thing: the radiated area should not be treated with ANY topical products whatsoever—that means no soaps, no shower gels, no body lotions, and absolutely no baby powder. You should wash it exclusively with lukewarm water and pat it dry very gently. If any burns do appear, ask your doctor for a prescription for Gentian Violet solution to dab on the area.

The primary goal of radiation is first to halt the progression of the disease, and in the best-case scenario, to destroy the tumor entirely.
Once the radiation sessions are complete, a follow-up MRI will be performed to assess the new status.
Some form of edema usually occurs, though it doesn't manifest aggressively in everyone.
Whether or not a specific bodily function returns depends entirely on whether the tumor directly attacked that center or if a nearby center was compromised due to collateral pressure from the surrounding tissue.
Unfortunately, dead nerve tissue—necrosis—is irreversible. Once it's gone, it stays gone.
For nutrition advice, look up Cancer Help UK—they have put together some truly excellent resources.
As for the sun, try to avoid it; instead, aim for bright, indirect light, or head to the beach very early in the morning or during the twilight hours.

Regarding chemo through the spinal fluid, that definitely should be looked into and considered as an option—you'll need to discuss the risks versus the benefits thoroughly.

Results might start becoming visible after just a few sessions, but you won't see the concrete outcome until the full course of therapy is finished and the follow-up MRI is done, which typically happens a few months after the last session. Radiation has a prolonged effect.

You can find the clinical trials at the link I shared recently.

Regarding immunotherapy, please talk it over with the doctor and take some time to look into experiences on international forums.

I'm keeping my fingers crossed for you. Your husband is such a wonderful man for how he's fighting this, and you are too. You both deserve so much credit!

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Thank you, Angela!

I believe so deeply that they will get this disease under control for many years to come that I can't even put it into words—it isn't just hope, it is pure conviction.

I did look into it, and officially, there aren't any studies listed, so perhaps the doctor is referring to something unofficial.

We have to stay strong—we really do!

Angela Wright said:It's a rare and tricky diagnosis, and that’s about all I know. I haven't really come across anything related to it personally.
Fingers crossed everything goes the way it's supposed to.

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Thanks for the fingers crossed and the good vibes.👍

Here are the blood test results—this is the first set since finishing chemo a few months ago:

The LDH has jumped quite a bit, going from 248 up to 382.
CRP is at 128.
White blood cell count is 14.7 (with neutrophils at 82% and lymphocytes at 11.2%), and glucose is 10.

Hey everyone. About ten years ago, my mom was diagnosed with melanoma on her neck. They operated on the site and removed some lymph nodes, and honestly, everything went smoothly without any extra treatment. She was doing great until it decided to show up again this year. This time, more lymph nodes are involved, though luckily there aren't any distant metastases. She just had a major surgery, and the surgeon says he "cleared out" the area as much as physically possible—he seems really happy with how it went. Now, they’re debating radiation. One group wants to do it as a preventative measure to stop it from coming back, but then a second medical board decided radiation isn't even necessary. I’m losing my mind here—who am I supposed to trust? Has anyone dealt with this kind of conflicting advice? What do we do next? I can't stop spiraling, constantly worrying that the cancer is just going to crawl right back. She’s being incredibly strict with her diet and following every single rule you'd expect someone fighting cancer to follow...

ironranger4 said:Hey everyone. About ten years ago, my mom was diagnosed with melanoma on her neck. They performed surgery on the site and removed her lymph nodes, and everything went smoothly without any additional treatment—she was totally fine until it flared up again this year. This time, more lymph nodes were involved, though there were no distant metastases found. She underwent an extensive surgery where the surgeon said he "cleared out" the area as much as humanly possible and felt really good about the outcome. Following that, the doctors suggested radiation as a preventative measure to stop it from coming back, but then a second medical board stepped in and decided radiation wasn't actually necessary. Who am I supposed to trust here? Has anyone dealt with conflicting opinions like this? I’m stuck on what to do next... I can't stop worrying that the cancer is just going to crawl back. She's being incredibly careful with her diet and following every single rule a cancer survivor should follow, but the anxiety is constant.

Get a third independent opinion and then you can make an informed decision and act accordingly. Honestly, it might be best to look for one outside our local area. Do some searching on Google using specialized melanoma research centers.

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Life is such a bittersweet joke—sometimes you’re laughing, sometimes you’re crying, and nothing feels quite as surreal as this. Honestly, I’ve been trying to make sense of it all. I spent hours digging through everything I could find regarding hoarseness during radiation—since it’s been popping up, both according to what people experience and what the medical literature says—and I decided to bring it up with his pulmonologist. I let her know he’s about to start radiation, mentioned he’s already scheduled for a CT scan, and specifically asked how we should manage this hoarseness while he's undergoing treatment. Her response? She told me straight out that it couldn't possibly be a side effect of the radiation. Instead, she claimed the cancer is pressing against the vocal cord nerve and that there isn't much we can do about it, other than just pushing forward with chemo after the radiation is finished. Now, I'm left sitting here trying to wrap my head around that logic... If that nerve is truly being compressed, wouldn't it make more sense for him to be hoarse all the time? It’s incredibly frustrating. I am desperately hoping she’s wrong. We’ll see what the reality is this weekend when he finally has a break from the radiation sessions.
Has anyone else dealt with this? Any experiences?

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ruggedfox11 said:Tears are flowing, laughter is fake, life isn't some fantasy... What's the point? Look, I'm not a saint, but I've read everything I could find about hoarseness during radiation (it shows up, supposedly as a side effect, both in personal accounts and medical literature). So, I tell his pulmonologist that he’s starting radiation, that he’s scheduled for a CT, and I bring up this hoarseness to ask what we can do to treat it while he's undergoing radiation. And her response? She says it can't be a side effect of the radiation, but rather that the cancer is pressing on the vocal nerve and there's nothing to do except push through with chemo after the radiation is done. Now you tell me what to think... If that nerve really is being squeezed, wouldn't it make sense that he'd be hoarse constantly? I'm losing my mind here... I desperately hope she's wrong. I'll find out this weekend when he's off radiation for a bit...
Anyone have experience with this?

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The battle you're fighting is beyond anything I can imagine. Please, just keep fighting... and kudos to you for staying positive. I'm keeping my fingers crossed for you.🙂

silentbison17 said:I honestly can’t even begin to wrap my head around what you're going through right now—it truly is unimaginable. Please know that I am keeping you in my prayers and rooting for you to pull through this. And seriously, I have so much respect for the positive attitude you've maintained through all of this; I'm crossing my fingers for you every single day. 🙂

silentbison17, thanks so much! :-)
I honestly don't know how I’d manage if I didn't try to maintain a positive outlook—it's really the only way to stay sane through all of this. But I have to admit, it’s incredibly draining when two doctors can't see eye to eye on a treatment plan or even just their basic clinical opinions. If it’s this frustrating dealing with them one-on-one, I can only imagine how tense those multi-disciplinary board meetings must feel behind closed doors.

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Hey there!

My mom has been struggling for about 40 years now with digestive issues, some bladder incontinence, trouble walking, and all that—basically everything that comes after surviving a malignant spinal tumor. She actually had to relearn how to walk from scratch.
About six months ago, she started dealing with stomach pains, and over the last few months, she’s dropped about 45 pounds. She ended up in the ER when she was feeling really bad, and they ran an abdominal ultrasound. Most of her organs looked fine, but there was this one thing:
Directly subhepatic, there is a large, inhomogeneous, mostly hypoechoic mass measuring 11 x 5.6 cm, which primarily corresponds to a tumor process in the ascending colon and hepatic flexure.

That was the finding from two months ago. Based on that, the doctor told her it looks like a malignant colon tumor, but said we still needed to get a colonoscopy to be sure. However, she flat-out refused any more testing, signed the refusal forms, and they sent her home.
She’s 76, and honestly, things are just getting worse every single day. Her mobility is declining, and for the last two days, the abdominal pain has been getting intense. We’ve actually called 911 twice already; they gave her an injection for the pain, but they wouldn't even transport her because they claimed it wasn't an "emergency."
The thing is, she refuses to go to the hospital. She doesn't want to deal with another surgery or go through that whole cycle again. She's even having suicidal thoughts—she just wants to pass away at home.
We feel so incredibly helpless. We keep trying to talk sense into her, but nothing works. 😢

Scott Davis32 said:Hi there.

My mom has been battling digestive issues, urinary incontinence, mobility problems, and all that mess ever since she recovered from a spinal tumor 40 years ago—learning how to walk again was a whole ordeal in itself.
About six months ago, the abdominal pain started, and over the last few months, she’s dropped about 45 pounds. She ended up in the ER when things got bad, and they ran an abdominal ultrasound. Everything else looked fine, but this came back:
Immediately subhepatic, there is a large, heterogeneous, predominantly hypoechoic mass measuring 11 x 5.6 cm, primarily corresponding to a tumor process in the ascending colon and hepatic flexure.

That scan was from two months ago. Based on those results, the doctor told her it looks like colon cancer and that she needs a colonoscopy to confirm, but she refused any further testing. She signed the refusal forms and they sent her home.
She’s 76, and she’s just wasting away; she can barely walk anymore. For the last two days, the abdominal pain has intensified. We’ve called 911 twice now, and while they gave her an injection for the pain, they wouldn't transport her because they claimed it wasn't an "emergency."
The thing is, she refuses to go to the hospital. She doesn't want to deal with another surgery or go through that cycle again. She’s having suicidal thoughts; she just wants to die at home.
We feel completely helpless. We try to talk sense into her, but nothing works. 😢

Given the suicidal ideation (which points toward clinical depression), she might be considered incapacitated. You should probably check with her doctor about the possibility of an involuntary psychiatric hold or hospitalization. It would also be wise to consult with Social Services.
Try approaching her by framing it differently: tell her, "Look, we won't force you to do anything you don't want to. You said you don't want treatment—fine, we'll respect that. But at least let them help manage the symptoms. Let them give you an IV to ease the pain or help you feel less miserable..."
The main goal is to get her into the hospital first. Once she’s there, you can take it one step at a time...
...Listen, if she's playing games with a tumor, it's very likely already metastatic, so the end result seems pretty clear to me. But that part about focusing on palliative comfort? That's actually worth a shot.

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ruggedfox11 said:Tears flow, laughter fades, life isn't some fairy tale... What's the point? Look, I'm not one to sit around and wonder, so I did my homework and dug through everything I could find regarding hoarseness during radiation (it shows up, allegedly as a side effect, both in patient experiences and according to medical literature). I went to his pulmonologist to let her know he’s starting radiation, mentioned he’s scheduled for a CT scan, brought up this hoarseness issue, and asked what we can use to treat it while he's undergoing radiation. Her response? She claims it can't be a side effect of the radiation, but rather that the cancer is pressing against the vocal nerve, and there’s nothing to be done except push forward with chemo after the radiation is finished. Now, you tell me—be smart about how you process that. If that nerve is actually being squeezed, wouldn't it make more sense for him to be hoarse constantly? I’m losing my mind here. I truly, deeply hope she's wrong. I'll find out this weekend when he finally gets a break from the radiation sessions..
Anyone have experience with this?

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Honestly, I don't see why it couldn't be caused by the radiation. It sounds to me like an edema that gets aggravated by the treatment, causing tissue swelling and resulting in hoarseness.
Maybe try inhaling steam with a hypertonic saline solution.

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Angela Wright said:Honestly, I can't rule out radiation being a factor here. It almost sounds like some kind of biological reaction where radiation irritates the tissue—almost like it’s inflaming things until they become hoarse.
Maybe try using hypertonic saline inhalations to see if that helps.

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Supposedly, the vocal cords aren't in the direct path of the radiation field, and they claim the radiation "can't" affect the speech center in the brain—that this is just "how the disease progresses." On top of that, there’s been no sense of taste...

Anyway, she's getting a solution from her oncologist to help with the nausea, and tomorrow we’re heading in for a follow-up CT scan of the chest and abdomen to get a clear picture of everything. The only thing really weighing on me right now is the NSE level—it's climbed to 101, whereas just four months ago it was at 69. Now, I can't help but worry that the jump is due to metastases in the brain.

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ruggedfox11 said:Supposedly, the radiation doesn't hit the exact field, and they claim the radiation "can't" affect the brain's speech center, and that this is just "how the disease progresses." On top of that, there's no sense of taste...

Anyway, she’s getting an anti-nausea solution from her oncologist, and tomorrow she heads in for a follow-up CT scan of the chest and abdomen to check things out. The only thing working against us right now is the NSE level, which jumped to 101—it was at 69 four months ago. Now I’m just left worrying if that spike is because of metastases in the head.

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I wouldn't worry about the loss of taste; that's a completely standard side effect from both chemo and radiation. My mom went through the same thing; it eventually improved, though it never quite returned to how it used to be. Ever since her first rounds of chemo and radiation back in 1997/1998 when she was fighting breast cancer, her sense of taste has been diminished.

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It’s progressing after all. Under the Prime Minister!!!!!!!
As much as I absolutely hate this curse, it only makes me want to enroll in medical school even more and finally find a way to beat it!!!'

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ruggedfox11 said:It’s progressing regardless. God damn it, Prime Minister!
No matter how much I hate this curse, I just want to enroll in medical school and find a way to fix it once and for all.

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I feel for you; we’re also waiting (not with much optimism, honestly) on my mother’s CT scans for her abdomen and chest.

Rachel Williams said:I’m so sorry—we’re actually in the same boat right now, waiting on my mom’s CT scans for her abdomen and chest (though, honestly, we aren't holding our breath too optimistically).

I really hope things turn out okay for you at least... Her pulmonologist mentioned that while the progression isn't massive, she doesn't want to take any unnecessary risks, so we're moving forward with Hycamtin.

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ruggedfox11 said:I’m just hoping everything turns out okay for you guys... The pulmonologist thinks the progression isn't massive, but she doesn't want to take any chances, so we're starting Hycamtin.

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Hang in there! We've got to keep fighting!

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Angela Wright said:Hang in there! We have to stay brave and keep moving forward!

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We’re going to make it—we have to. I was completely caught off guard by everything. When I sat down with the pulmonologist to go over his results, I just fell apart—I couldn't stop crying. That day, she actually comforted me by saying, "Unfortunately, even we doctors feel overwhelmed by a diagnosis like this." It really hit home because I felt just as sick myself—feeling small, foolish, and utterly useless because I didn't understand any of the medical jargon.
Anyway, I have a few questions, starting with his specific findings.

http://uploads.tapatalk-cdn.com/201...abefa49fc5.jpg

Is the tumor climbing along or near the heart? And what exactly are lymphangitis? Google suggests enlarged lymph nodes might be due to strep (his most recent blood work from Monday shows high neutrophils and monocytes), but the pulmonologist is saying it's essentially cancer metastasis.
Yesterday, he coughed up a chunk of something, and honestly, I had no idea what it was. As soon as it came out, it looked like fish roe—just white, fatty looking, and about the size of a ping-pong ball. After half a day, it just looked like a little pile of fatty tissue (I've watched way too much Dr. House, so I find myself wanting to save everything just in case it needs analysis; God forbid, though, the thought of all these illnesses...)

http://uploads.tapatalk-cdn.com/201...0e88818f84.jpg

Oh, right—they opened up three clinical trials for microcell therapy in Chicago involving immunotherapy, so we’re going to send over all the test results and scans and just hope he gets accepted.

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ruggedfox11 said:Come on, you bet! I was totally blindsided by the initial news. When I sat there holding those pulmonologist's results, I just completely fell apart and started sobbing. That day, her saying, "Unfortunately, even we doctors get sick seeing a diagnosis like this," was the only thing that comforted me—because I felt sick myself, stupid and useless because I just didn't understand any of it.
Anyway, I have a few questions, starting with his findings.

http://uploads.tapatalk-cdn.com/201...abefa49fc5.jpg

Is the tumor climbing up or around the heart? And what exactly are lymphangitis? Google claims enlarged lymph nodes can be caused by strep (his last blood work from Monday showed high neutrophils and monocytes), but the pulmonologist basically said the cancer is metastasizing.
Yesterday, he coughed up a chunk of something, and we have no clue what it was. Whatever it was, it looked like fish roe—just white, fatty, and about the size of a ping pong ball. After half a day, it just looked like a little pile of fatty tissue (I've watched Dr. House way too many times, so now I want to analyze everything if it needs testing; God help us with these illnesses)..

http://uploads.tapatalk-cdn.com/201...0e88818f84.jpg

Oh right, they released three clinical trials for microcells in Chicago involving immunotherapy, so we’re going to send over all the lab results and scans and hope he gets in.

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I'm not sure about the specific term, but what he coughed up could very well be a piece of the tumor. It looks spongy, which would fit with lung tissue. If only I had some formalin to preserve it so we could take it in for an exam.
Fingers crossed for the study.

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