Renal colic. I got a very large dose of dilaudid for mine. Little fucking grains of sand put me down like a smack from a baseball bat. Dang man, stones are at least (having survived to brag about pissing sea anemone) a kinda sorta useful indicator about dietary improvements that you may be able to make. Perhaps there will be crossover into the YA Jaw pathology. HTFDTW?
YA Jaw Update: Part III, the return
- Thread starter Tom the Melaniephile
- Start date
Well, one potential crossover is that antibiotics can increase the chances of a kidney stone - and I had been on antibiotics after the biopsy.
There's also the fact that we finally hit "real summer" here in Central Texas (100F or close to it) and I spent too much time out at the park with the kids for a couple of days without proper hydration. I've continued assiduously drinking water (usually with a splash of lime juice) even after the stone passed this morning.
I realized that I haven't had citrus in awhile. Citric acid can prevent some types of kidney stones.
On another note, lots of soreness in the abdominal area and mid-back today from the vomiting in Round 2. I found out today that I could be heard from all the way out in the parking lot - and I was already in a room around a corner and reasonably far down the hall from the entry. The entry itself had multiple layers of doors... I'm happy I brought my bowl with me.
There's also the fact that we finally hit "real summer" here in Central Texas (100F or close to it) and I spent too much time out at the park with the kids for a couple of days without proper hydration. I've continued assiduously drinking water (usually with a splash of lime juice) even after the stone passed this morning.
I realized that I haven't had citrus in awhile. Citric acid can prevent some types of kidney stones.
On another note, lots of soreness in the abdominal area and mid-back today from the vomiting in Round 2. I found out today that I could be heard from all the way out in the parking lot - and I was already in a room around a corner and reasonably far down the hall from the entry. The entry itself had multiple layers of doors... I'm happy I brought my bowl with me.
For those confused by the "spiky" comments, I found you some images! Actual kidney stones. Not my actual stone.
Amusingly, I'm about the same. Kidney stones rank #2 on my personal pain scale, and #1 is mouth related.
When I was a little kid, I tripped and fell face first on a marble floor in a church. Broke both of my upper front teeth along a diagonal, and had them reconstructed a few times. Eventually, they gave up on that, ground off the remaining enamel all the way around, and put crowns on, fastened to the remaining dentin. Number one on the pain scale is when, while re-attaching one of those crowns, the dentist dried off the dentin nub by spraying it with cold compressed air without any anesthetics at all.
That's why it's links and not inlined. Same reason I have been iSpoilering the grosser descriptions.
Well, the specialist pathology report came back and apparently was just a cursory "Ameloblastoma" diagnosis without going into the subtype. Oral surgeon was already pushing back on the pathologist before I got notified of the results and is asking the pathologist to actually do their job.
This is fairly important - if it's the unicystic subtype, the oral surgeon is willing to go forward with just cleaning out the tumor instead of the radical resection. Otherwise, I plan to go forward with pursuing targeted treatment.
Hrmmm, I hope that you don’t have any further shenanigans with that lab and they do what was requested of them. That’s about as useful as them sending a report back saying that you’ve been confirmed to be ill.
So, to update the thread:
Based on a secondhand verbal late Wedensday from my oral surgeon who finally talked to the forensic pathologist - pathologist is apparently wishy-washy enough on subtype identification that oral surgeon wants to go the full blown resection/fibular flap route. Still waiting on getting the written pathology report.
In the meantime, I've been in touch with MD Anderson about getting targeted treatement - and already transferred departments once. I do have a medical record number for MD Anderson now and gave them the contact info for the oral surgeon for copies of medical records (including the ones from 15 years ago) - now waiting on contact from the appropriate tech/nurse/whomever in the new department, which with any luck should be Monday/Tuesday. Alerted my GP.
Based on a secondhand verbal late Wedensday from my oral surgeon who finally talked to the forensic pathologist - pathologist is apparently wishy-washy enough on subtype identification that oral surgeon wants to go the full blown resection/fibular flap route. Still waiting on getting the written pathology report.
In the meantime, I've been in touch with MD Anderson about getting targeted treatement - and already transferred departments once. I do have a medical record number for MD Anderson now and gave them the contact info for the oral surgeon for copies of medical records (including the ones from 15 years ago) - now waiting on contact from the appropriate tech/nurse/whomever in the new department, which with any luck should be Monday/Tuesday. Alerted my GP.
I love how the pathologist basically wasted a month. It's not like cancer gets worse over time or anything.
Good luck on your treatment, hope it moves faster from now on.
Appreciate the good thoughts.
I don't know if I can let myself hope things move faster. Going to continue working for it, of course.
So the thought process per your surgeon is:
- formal pathology read comes back unicystic -> ok w conservative (that is, tumor only) surgery
- formal pathology read is definitely not unicystic -> go w radical (that is, big chunk of jaw) surgery
That said, wasn't there also a plan to send the sample for genomic sequencing? Or is that what you mean by the written pathology report?
That's a good summary of their stated thought process.
"wishy-washy" wasn't his exact words - but along those lines. I have a copy of the pathology report now and it focuses on "ameloblastoma" and "another ameloblastoma" along with some cell characteristics. It does mention being "clinically suspicious for unicystic." Not outright saying it.
I'm pretty disappointed in the pathologist.
I requested genomic sequencing from the oral surgeon's office, there was no response on that. At this point I'm probably better off just waiting for MD Anderson, hoping to get that set up for next week.
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These are rare tumors and also may fall into the DMZ between DMD and MD pathologists sometimes. Second opinions are always okay, especially if Anderson didn’t review it themselves…and if they did it’d be a sub specialty expert probably. Sometimes a tumor board meeting can also help with communication when something is hard to nail down and there are large clinical decisions depending on things.
The long timeline is probably partly “long COVID”, the entire medical system including pathology laboratories is having staffing and other technical shortages that are making everything harder and to take longer. Rare or unusual or tough cases will take a long time even in ideal times, and 2023 is not ideal on many levels. The pathologist has to sign off on the case when it is finished, but they may have very little control over how long much of the case took. It’s also helpful if the surgeon knows the pathologist or has a good enough relationship that they can meet informally and hash out details of the case.
The long timeline is probably partly “long COVID”, the entire medical system including pathology laboratories is having staffing and other technical shortages that are making everything harder and to take longer. Rare or unusual or tough cases will take a long time even in ideal times, and 2023 is not ideal on many levels. The pathologist has to sign off on the case when it is finished, but they may have very little control over how long much of the case took. It’s also helpful if the surgeon knows the pathologist or has a good enough relationship that they can meet informally and hash out details of the case.
Well, it took MD Anderson's finance department over a week to review and clear my referral. That's new - I've never had a doctor's office require a significant review after the referral came in.
Of course, that meant I didn't get the tentative appointment, and now I'm waiting til September unless something opens up sooner.
Found out yesterday that when MD Anderson requested records from my oral surgeon, they got just 5 pages. I'm not even sure what they were, but I know they did not include either the pathology report, or all my records from the first round of surgery 15 years ago. I know the oral surgeon had both. I've both told MD Anderson and emailed the oral surgeon's office about having the actual complete records transferred.
Of course, that meant I didn't get the tentative appointment, and now I'm waiting til September unless something opens up sooner.
Found out yesterday that when MD Anderson requested records from my oral surgeon, they got just 5 pages. I'm not even sure what they were, but I know they did not include either the pathology report, or all my records from the first round of surgery 15 years ago. I know the oral surgeon had both. I've both told MD Anderson and emailed the oral surgeon's office about having the actual complete records transferred.
MD Anderson like any other place taking in referrals will want to review the pathology themselves, and that will typically include the report along with the microscope slides. Reading an outside report can definitely be helpful, but for rare things it would be very helpful (maybe necessary) to have a local expert take a look at the source material. A September appointment might give them enough time to accomplish this so maybe not a terrible thing. But don’t wait until the appointment to get that ball rolling, if you have a copy of your own report you can facilitate by making sure the actual lab is being responsive (sometimes in 2023 folks just quit their job and stuff can languish until someone can get in to pick up the pieces).
For this sort of stuff, it can be helpful to just get the records yourself, and offer to fax them in yourself (and certainly bring them to appointments just in case). The EMRs can really suck, and document handling in medicine is almost non-existent -- and that's before staff issues.
I appreciate the input. Yeah, if I don't hear something by mid next week, I'll pursue further.
So, after some poking at MD Anderson about whether they had the records, I got a call back letting me know that despite repeated requests, the oral surgeon had not supplied them.
Therefore, I went politely proactive with the oral surgeon, contacting both the front desk and the nurse I'd been assigned. Originally the records person told me "Oh, it just got approved, but we're only supposed to send it to your PCP". I explained (yet again) how it really needed to get to MD Anderson. Late that day, I got a voicemail that it had been sent to both my PCP and MD Anderson.
Waiting on confirmation from the MD Anderson end (yes, I sent them a message via the portal on Friday) that it actually got there - but it's looking better on the records front.
Therefore, I went politely proactive with the oral surgeon, contacting both the front desk and the nurse I'd been assigned. Originally the records person told me "Oh, it just got approved, but we're only supposed to send it to your PCP". I explained (yet again) how it really needed to get to MD Anderson. Late that day, I got a voicemail that it had been sent to both my PCP and MD Anderson.
Waiting on confirmation from the MD Anderson end (yes, I sent them a message via the portal on Friday) that it actually got there - but it's looking better on the records front.
Good job self advocating. That shit pisses me off to no end. It took me seven goddamn months to get a referral to an orthopedic surgeon to actually go through from time of referral recommendation by PCP to day that the ortho’s office confirmed that I’d be scheduled as a new patient. Alltold probably a day on the phone in hours asking people to please connect, then just as I’d resigned myself to needing to hand deliver the damn paperwork via 5hr round trip drive someone’s braincell clicked and learned how to use a fax machine. Real glad that you (hopefully) will not need to go to that extreme.
Aaanyway, trying to not relive the kidney stone trauma and give an update...
First MD Anderson appointment is still on for 8AM Monday, and I have a 1-night hotel reservation for Sunday night. This afternoon has meant a bunch of MD Anderson messages/MyChart updates. They did get the pathology slides and agree it's ameloblastoma. No attempt at subtyping, at least in the online MyChart report.
I'm set up for a baseline Xray mid-morning Monday after the initial consultation, and a contrast CT on Thursday at 6:45AM (!) - I've requested a standby for anything earlier. If there's nothing else going on between midmorning Monday and way-too-fucking-early Thursday, I'll probably just come home in the meantime.
First MD Anderson appointment is still on for 8AM Monday, and I have a 1-night hotel reservation for Sunday night. This afternoon has meant a bunch of MD Anderson messages/MyChart updates. They did get the pathology slides and agree it's ameloblastoma. No attempt at subtyping, at least in the online MyChart report.
I'm set up for a baseline Xray mid-morning Monday after the initial consultation, and a contrast CT on Thursday at 6:45AM (!) - I've requested a standby for anything earlier. If there's nothing else going on between midmorning Monday and way-too-fucking-early Thursday, I'll probably just come home in the meantime.
This is great. Fresh imaging and new minds to attack the problem. We are wishing for the best possible outcome and some actionable, attractive plans for treatment are presented without much more waiting. Keep us posted and great job getting to this point.
Well, this was quite a good day for me.
In brief - the MDA doc is totally onboard with pursuing targeted treatment. She was appropriately clear with radical surgery (BLEAH!) being the current standard of care.
Doc is apparently quite impressed with targeted treatments for BRAF mutated tumors. As of ~10AM this morning, I have orders in for genetic/biometric screening of the extant tumor biopsy samples. If I'm in the lucky 80%, that should mean the targeted treatment I identified (per PubMed) will be authorized.
I also have a tentative appointment with the appropriate MDA group for those treatments in a couple of weeks.
In brief - the MDA doc is totally onboard with pursuing targeted treatment. She was appropriately clear with radical surgery (BLEAH!) being the current standard of care.
Doc is apparently quite impressed with targeted treatments for BRAF mutated tumors. As of ~10AM this morning, I have orders in for genetic/biometric screening of the extant tumor biopsy samples. If I'm in the lucky 80%, that should mean the targeted treatment I identified (per PubMed) will be authorized.
I also have a tentative appointment with the appropriate MDA group for those treatments in a couple of weeks.
Great job getting to the right place. I’d be very surprised if the markers don’t allow the immunotherapy to move forward as it seems to be documented as a known target and when you get some progress with that neoadjuvant approach the subsequent surgical site will be reduced, less traumatic surgery and recovery periods, then on to followup. Fingers crossed that you see a clean line of progression along these lines or better.
Sorry to hear about your troubles! I
'm the same way for all kinds of meds that affect pain and cognition. During my Lasik touchup, I asked for double Valium (as a single dose did nothing the previous go-around). No dice.
On the plus side, a history of migraines does wonders for your pain tolerance. When I broke my leg I told the ER that my pain was "0-1" on a ten point scale. Big mistake.
So, while I don't recommend this method - I did manage to have my first ever noticeable reaction to opiates earlier this year.
Kidney stone, pain to the point of projectile vomiting. ER gave me IV fentanyl and I felt kinda lightheaded for about 20 minutes.
Glad you found a physician that agrees that targeted therapy is worth evaluating for!! Here's hoping that the genetics suggest the BRAF-targeted stuff are indicated.
Well, ~80% of mandibular ameloblastomas have the specific BRAF mutation - so I think my odds are pretty good. Even if I'm in the 20%, there's a fair chance that another drug regimen would work. I suppose I should dig into that other 20%...
We'll see!
Important note for others doing research: Maxillary ameloblastomas almost always have a different mutation. You can't just look at mutation frequency for all ameloblastomas, you have to split out maxillary (skull) and mandibular (jawbone).
Well, today was a long, busy, exhausting (but ultimately good!) day. After driving to Houston I got to see the dental oncologist, the medical oncologist, the pharmacist, had a blood draw and an EKG before driving home. Over 13 hours in total.
BRAF V600E is confirmed!
The medical oncologist is experienced with the targeted drug treatment noted above and has used this exact protocol on a number of other patients for cancers with BRAF V600E (he mentioned skin/Melanoma, lung and thyroid). He had done a lit review for ameloblastoma and found enough case studies to be comfortable prescribing the drug regimen (after yet again reminding me at length that surgery is the standard of care), and was going to start the process of getting prescription approval.
I also got a lengthy talk about potential side effects, how I would need to deal with them, etc. Then the pharmacist did the same thing in even more detail. Oh, and I signed a blood transfusion consent - treatment can cause RBC levels to drop, they wanted to have it ready just in case. Effectively it can be considered "Chemo lite"
Baseline CT scheduled later this week, followed by a telemed appointment with the medical oncologist. The 1 month followup visit is already scheduled as well.
If my insurance doesn't balk, I could be starting treatment next week.
Anyway, a really good day - and I should probably go to sleep soon.
BRAF V600E is confirmed!
The medical oncologist is experienced with the targeted drug treatment noted above and has used this exact protocol on a number of other patients for cancers with BRAF V600E (he mentioned skin/Melanoma, lung and thyroid). He had done a lit review for ameloblastoma and found enough case studies to be comfortable prescribing the drug regimen (after yet again reminding me at length that surgery is the standard of care), and was going to start the process of getting prescription approval.
I also got a lengthy talk about potential side effects, how I would need to deal with them, etc. Then the pharmacist did the same thing in even more detail. Oh, and I signed a blood transfusion consent - treatment can cause RBC levels to drop, they wanted to have it ready just in case. Effectively it can be considered "Chemo lite"
Baseline CT scheduled later this week, followed by a telemed appointment with the medical oncologist. The 1 month followup visit is already scheduled as well.
If my insurance doesn't balk, I could be starting treatment next week.
Anyway, a really good day - and I should probably go to sleep soon.
Thanks, all! I should probably go ahead and get my flu and COVID boosters this week.
Okay, I was able to get a baseline echocardiogram scheduled for Austin on Tuesday instead of Houston on Friday. This is my last hurdle before starting treatment. Earlier and saves me about 350 miles of driving, though getting the order transferred was a moderate hassle.
Telemed went well with the medical oncologist, I have the drugs and the okay to start them immediately after the echo. Zero copay due to signing up online for the manufacturer's copay card - just had to show the digital image to the pharmacy.
Woo!
Telemed went well with the medical oncologist, I have the drugs and the okay to start them immediately after the echo. Zero copay due to signing up online for the manufacturer's copay card - just had to show the digital image to the pharmacy.
Woo!
So, the dose I took this evening completes 7 days on the meds. Woo!
Side effects aren't bad, mostly just being much more tired than usual (both sleepy tired and physically tired) - I persevered and still hit my 10k steps/day every day. They prescribed me anti-nausea meds as well, but I haven't had to use them.
One benefit so far - I noticed starting a couple of days ago that the area of the jaw with the tumors aches less frequently and less intensely. Could be coincidence, but I'll take it as a hopeful sign.
Side effects aren't bad, mostly just being much more tired than usual (both sleepy tired and physically tired) - I persevered and still hit my 10k steps/day every day. They prescribed me anti-nausea meds as well, but I haven't had to use them.
One benefit so far - I noticed starting a couple of days ago that the area of the jaw with the tumors aches less frequently and less intensely. Could be coincidence, but I'll take it as a hopeful sign.
Yes, I am cautiously optimistic.
End of the month I have followup testing, but the current list of tests for that day seems to be "hey is the body tolerating these meds" testing - not checking on efficacy yet (no imaging scheduled.)
End of the month I have followup testing, but the current list of tests for that day seems to be "hey is the body tolerating these meds" testing - not checking on efficacy yet (no imaging scheduled.)
As a followup, starting about a week after going on the meds - pain/aching was basically gone 99+% of the time. Remaining pain could be due to my cracked molar back there.
Apparently I cracked three of my molars since the prior dental visit, dentist suspected I was clenching/grinding teeth. Ugh. I'm going to wait til after my end-of-October chemo followup visit before deciding what to do with the one near the tumor - if tests show I'm not tolerating the chemo, it's going to mean surgery and that one will be gone anyway.
Apparently I cracked three of my molars since the prior dental visit, dentist suspected I was clenching/grinding teeth. Ugh. I'm going to wait til after my end-of-October chemo followup visit before deciding what to do with the one near the tumor - if tests show I'm not tolerating the chemo, it's going to mean surgery and that one will be gone anyway.