The medication committee has been making things difficult for her—they’re insisting there are quotas, even though I found out from the nurse handling the orders this morning that those quotas don't actually exist (though if they did, insurance would cover it anyway). They were demanding an explanation from the pulmonologist as to why the medication wasn't ordered last week, simply because those idiots on the committee failed to sign off on the approval. It’s honestly maddening how much confusion they cause. I feel terrible for her; she didn't delay anything, yet somehow she's being blamed for the incompetence of the people above her. It almost seems like the nursing staff enjoys seeing someone finally call out these doctors who act like they own the place.
Ashley Robinson3 said:I’m right there with you—here is the full story as reported by one news outlet (copied and pasted below):
"My only option now is to move my case over to Dr. Belev, who was the only specialist with a clear vision for how to proceed with treatment. Back in April, I underwent testing for Sorafenib at the Mayo Clinic. They confirmed I have no side effects or allergies to the medication, and meanwhile, my additional tumor DNA analysis results arrived from the US—which I had to pay for out of my own pocket. Those results indicate my tumor is SDH B positive, suggesting it might respond best to Sorafenib. Unfortunately, both the Cleveland Clinic and Rebro refused to cover the cost of these drugs through their budgets because the medication isn't considered sufficiently studied for this specific condition. It's such a rare situation—Daniel mentioned he might be the only person in the entire country dealing with this exact subtype," said Romić.
'The medication costs about $3,300 a month, and I simply don't have that kind of money...'
Dr. Belev managed to secure a small amount of the medication, though sadly, it isn't enough to last through a full three-month monitoring period.
"I tried reaching out directly to the manufacturer to request a donation for the first two months—just to see if the drug actually works—but unfortunately, even Bayer turned me down, stating they can't donate medication for my specific GIST diagnosis. Who else can I turn to, or who *must* I contact, just to extend my life and give my twins a little more time with their dad? Does everything in this country always have to be such an uphill battle? I even looked into options in Austria; you can get the drug with a prescription, but it still costs around $3,300 a month. Sadly, I just don't have those funds. Please, help me try to protect my children's childhood—they are the reason I am fighting this. If anyone happens to have any extra Sorafenib (Nexavar) left over from their own treatment, please let me know," Daniel pleaded.
Please don't take it personally, but that comment was actually directed at my...
Chicago... Now my pulmonologist is trying to make me feel guilty just because I flagged this issue to the Department of Health. Really? It’s not even about "looking someone in the eye," it's more than that... Am I actually in the wrong here?
Well, the Department finally stepped in. They demanded an explanation from the Mayo Clinic as to why the medication wasn't approved immediately—and wouldn't you know it? Suddenly, we can have it by tomorrow.
I honestly had a total meltdown today—I ended up causing quite a scene over at the Department of Health because of these ridiculous waiting lists and those absurd "monthly quotas." Hopefully, they actually take some action after my outburst...
The female pulmonologist is actually going to refer me back to my hometown physician :-) I tried to advocate for him regarding the cortisone—he really needs to be tapering by 5mg increments, not 10mg, and he should stay at 30mg for the time being. To make matters worse, he woke up this morning with swollen joints in his legs (exactly how it was when he first came home from the hospital). The review board still hasn't given the green light, and since it’s the end of the month, they claim they’ve already hit their monthly medication quota!! DAMN THESE QUOTAS!!! It is enough to drive you absolutely insane!!! He won't get approval until August 1st (hopefully)!! I even called the director, and he had the audacity to tell me that HIS illness isn't serious enough and that he just HAS to wait!!! I mean, what kind of system are we living in? Is this really what we fight for? To be told that he shouldn't "use up" the quota? That he can just wait? That his condition isn't critical enough?! I am just so bitter... Even when you're battling an illness, you're still restricted by these damn quotas. It's a total disaster!!
Angela Wright said:So, if that's the case, it should actually be good news since those masses wouldn't be there anymore. Maybe that scan wasn't showing progression after all?
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Well... I didn't ask her if it meant the exact same thing for the CT scan results—it's enough to know there's growth near the bronchus, so it's better if she responds immediately and starts the chemo.
Oh goodness, Rachel Williams, I honestly don't know what to say.
So, the pulmonologist confirmed it really is cancerous tissue—though it’s necrotic now—likely originating from the right bronchus since that was completely obstructed from the start. Clinically speaking, everything is holding steady because all three [medications] are being coordinated by the insurance provider, so we’re just waiting on the board's approval for the Hycamtin today or tomorrow.
Angela Wright said:I’m not sure about the specific terminology, but what was expelled could very well be a fragment of the tumor itself. It has that spongy texture, which would certainly align with lung tissue. If only you had some formalin on hand to preserve it so a specialist could take a look. I'm keeping my fingers crossed for the pathology report.
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Unfortunately, I don't have any formalin on hand :-(
Maybe I could just put it in the freezer or the fridge—I'm really not sure if that would actually do anything.
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.
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...)
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.
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.
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!!!'
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.
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.
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?
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.
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.
stormyfalcon68, we actually took a little trip out of town for a vacation recently. We have radiation scheduled for July 12th, and the CT simulation is set for this Friday. Our oncologist has been mentioning the possibility of intrathecal chemotherapy—injecting it directly into the spinal fluid—and we also met with the neurosurgeon today. He’s actually leaning away from surgery in favor of radiation; his take is that since there aren't signs of micrometastases, and because these two spots are diametrically opposed, an operation would be incredibly invasive and difficult.
Anyway, I’ve put together a list of questions for the oncologist. These are the ones I have so far, but if you think I’ve missed anything crucial or if you have any other helpful suggestions, please let me know:
- How long will the radiation sessions last (total dosage vs. daily dose)? - What are the side effects, and how should we manage or mitigate them? Also, how long do they typically last, and should we expect them immediately or can they be delayed? - What is the primary goal of the radiation? Is it meant to stop the growth, shrink the tumors, or completely kill the targets? - How will we know if the radiation is actually working? - Is edema (swelling) an inevitable part of the process, or can it be avoided entirely? - Will vision improve or return to normal? And once the treatment is done, does necrotic tissue remain in the brain, or does the body naturally clear it out? - Are there specific dietary restrictions during radiation, or any rules regarding sun exposure? - Regarding chemo through the spinal fluid after radiation—is that a definitive plan or just an option? - What is the follow-up schedule, and how often will check-ups occur? - When can we realistically expect to see results? - Are there any ongoing clinical trials specifically targeting micrometastases? - What about immunotherapy—specifically Keytruda?
I am reaching my breaking point Since last Wednesday, we have been sitting around waiting for some oncologist to actually step up, take charge, and give him a scheduled date for radiation. This whole situation regarding Doli is just infuriating—it’s honestly enough to make you want to throw in the towel and walk away from the whole mess.
We finally got the results from our follow-up CT scan after finishing chemo—though, to be honest, we managed to squeeze it in just ten days later because we were able to jump the queue through a connection:
The report is written completely differently than the last one—it feels a bit superficial, maybe even incomplete. That said, I think the most important takeaway is that everything remains stable and otherwise looks fine. There was a slight increase in the area around the pancreas, but I’m leaning toward—and really hoping—that it’s just an effect of the Decortin, which helped bring things back down previously. I just hope they don't drag their feet on scheduling the radiation so we can finally get this whole illness under control once and for all.