Entries

Matera

Ostomy Supplies

Ostomy Supply Checklist. I need to get this together and make a list for the web.

Pantel-Drawing

I had an appointment with Dr. Pantel on July 1st. We were hoping we would get a date for the surgery but that didn't happen. He did give us a drawing of what the surgery would entail. For a more detailed view of the fistula look here.

For a look at what will be cut out look here.

To see what Dr. Ghali is going to do look here.

Fado Ghali

Dr. Fado Ghali will be doing the urology side of my exenterration. He seemed like a nice name and tried to inform me of what down sides maybe.

A cytectomywill be done while Dr. Pantel removes the rectum.

Byram Services

First delivery made by Daniel came on May 7th

May Log

May - we're already and month in.

Helpful Links

Some of these might be useful

Radiation Injury

From ChatGTP

Radiation injury can have significant effects on blood flow to tissues, depending on various factors such as the type of radiation, dose, duration of exposure, and location of the irradiated tissues. Here’s how radiation injury can impact blood flow:

1. Acute Effects: In the acute phase following radiation exposure, damage to blood vessels and surrounding tissues can occur rapidly. Radiation-induced inflammation and endothelial cell dysfunction can lead to vasoconstriction and reduced blood flow in the affected area. This acute decrease in blood flow can contribute to tissue ischemia (lack of oxygen) and necrosis (tissue death), particularly in highly radiosensitive tissues such as the skin and mucous membranes.

2. Chronic Effects: Chronic radiation exposure can lead to progressive damage to blood vessels, resulting in fibrosis (scarring) and narrowing of the blood vessels. This can impair blood flow to the irradiated tissues over time, leading to chronic ischemia and tissue damage. Additionally, radiation-induced fibrosis can compress blood vessels, further reducing blood flow and exacerbating tissue injury.

3. Endothelial Dysfunction: Radiation can damage the endothelial cells that line blood vessels, disrupting their normal function. Endothelial dysfunction can impair vasodilation (expansion of blood vessels) and promote vasoconstriction, leading to alterations in blood flow regulation. This can contribute to hypertension (high blood pressure) and microvascular dysfunction in irradiated tissues.

4. Angiogenesis: In response to tissue injury caused by radiation, the body may initiate angiogenesis, the process of forming new blood vessels. While angiogenesis can potentially restore blood flow to damaged tissues, it may also be aberrant or insufficient, leading to the formation of abnormal blood vessels and impaired tissue healing.

5. Secondary Effects: Radiation-induced damage to surrounding tissues, such as muscles, nerves, and connective tissues, can indirectly affect blood flow by compromising tissue integrity and function. For example, radiation-induced fibrosis or nerve damage can impair muscle contractility and vascular tone regulation, leading to further alterations in blood flow dynamics.

Overall, radiation injury can have complex and multifaceted effects on blood flow to tissues, ranging from acute vasoconstriction and ischemia to chronic fibrosis and vascular dysfunction. Understanding these effects is crucial for mitigating the risks associated with radiation exposure and developing effective strategies for managing radiation-induced tissue injury.

Prednisone for Allergies

Well it's that time of year again. I had to go the walk-in clinic to get a prescription for prednisone. It was feeling better on Monday.

Pelvic Exenteration

Bad News from the Cleveland Clinic that this might take a year before you can sit up. Missing all those organs make walking and standing hard.

A PDF overview of the whole thing from somewhere in the UK.

People at Yale

• Alice White held my hand. ?
• Debbie Mastrioanni Radiation at Yale

Oxycoden Log

I thought I try and keep track of how often I have to take oxycoden. You get results in 15 minutes but it only last about 3 hours.

April Log

This should be ephemeral. I can't remember from day to day, maybe this will help.

Catheter Notes

Updates

• 2024-04-05 -- Had to go to the ER for spasms. They gave me morphine for the pain and changed my prescription to pyridium.
• 2024-03-27 -- This catheter change was very painful. I think it also agrevated the proctitis which also hurts a lot.

Observations

I had this installed on the February 21st, today, February 23rd it still hurts. Could this be because of the amout of inflamtion in the bladder?

Rectourethral Fistula

This is the kind of fistula I have

Development of a recto-urinary fistula following radiation treatment for prostate cancer is a dreaded complication. Radiation proctitis with rectal ulcer formation precedes fistula formation in most patients and must be aggressively managed. While fecal and urinary diversion can effectively manage symptoms in most patients, definitive fistula repair should be the ultimate goal if possible.

Plan Going Forward

• pt strongly encouraged to stay well-hydrated with at least 3 liters of water/day
• pt currently on antispasm medications, will hold off on prescribing oxybutynin XL at this time
• will plan for urethral catheter changes over wire with possible cystoscopy/RUG q4 weeks (arround March 23)
• pt to be planned and scheduled for possible exam under anesthesia, cystourethroscopy, retrograde urethrogram/cystogram, sigmoidoscopy under general anesthesia with me of Urology and Dr. Haddon Pantel of Colorectal Surgery in approximately 8 weeks (after a period of urinary diversion with urethral catheter. Around April 20th)
• pt to obtain preop medical clearance including but not limited to: BMP, CBC, type and screen, urine cx, EKG, PCP note
• referral placed to Dr. Haddon Pantel of Colorectal Surgery for concurrent evaluation and treatment of rectourethral fistula

Fistula Repair

My fistula could not be repaired becase the radiation damaged the tissue around the fistula beyound repair. If it could have this is what it might have looked like.

Running Log of Events

Prescription List

These are current prescriptions

• abiraterone 500 mg tablet Commonly known as: ZYTIGA
• predniSONE 5 mg tablet Commonly known as: DELTASONE
• tamsulosin 0.4 mg 24 hr capsule Commonly known as: FLOMAX
• gabapentine - 100mg oral tablet

• 2024-02-14 Tramadoc for pain - Dr. An
• 2024-02-14 Nitrofurantoin for infection - Mark at clinic

Mediterranean Diet Shopping List

Recipes

Colonoscopy Results

Initial Observation

Biopsy shows lamina propria with mild inflammatory cell infiltrate, mild glandular architectural distortion. The findings are non-specific which can be seen in medication induced mucosal injury, chronic infectious colitis, diverticulosis associated mucosal changes, or radiation assocaited mucosal changes, among others. Correlation with endoscopic findings and clinical history is recommended. No evidence of dysplasia in all parts.

2023-12-27 Update from Dr. Bogardus

Hi Brian, Dr. Bogardus has reviewed the biopsies- in the esophagus there is some ulceration, and he has prescribed an antiacid for you to take daily (pantoprazole). Also, the biopsies in the rectum showed mild inflammation, likely due to radiation, would he suggests that you continue Lialda, and also restart the sucralafate enemas you were on. He also prescribed Bentyl, an antispasmodic medication, to see if that helps with the urges. Please let us know if you have any questions! Holly RN

Visted Yale Gastroenterologist

Saw Dr. Bogardus today. He was very nice but there doesn't seem to be much he can do about the proctitus. We going to have a colonoscopy on December 19th.

The Dr. prescribed Mesalamine which is an antiinflamatory agent but it may take weeks to work.

Radiation Side Effects

What I've Got: Radiation Proctitis

Damage can result from radiation beams accidentally damaging the cells lining the intestines when radiation is directed at the abdominal or pelvic region. The radiation dose, the length of therapy, the size of the treatment region, and the patient's radiation sensitivity are some variables that affect the severity of the condition. Radiotherapy can not only damage normal anatomy and biological function but also lead to poor healing in the following reconstructive process

This occurs when the rectum is damaged after exposure to radiation therapy used for prostate cancer. When radiation is used to treat this cancer, the resulting cell death sometimes exceeds what is needed to destroy cancerous cells and additionally affects the surrounding areas; this extensive cell death can lead to inflammation in rectal tissues.

It is important to note that radiation proctitis is a result of radiation doses that are beyond the ability of the normal tissue to repair or recover from injury.

The doses generally delivered to the pelvis vary from 45 to 50 Gy for adjuvant or neoadjuvant treatment for prostate or anorectal malignancies; up to 90 Gy is considered the definitive therapy for gynecological malignancies [9, 10]. It is generally agreed that treatments <45 Gy cause very few side effects. Doses between 45 and 70 Gy, ( I had 31 doses delivering 69Gy) which is the dosage range for most treatments, cause more complications, but the complications tend to be of lesser intensity [9, 10]. Doses above 70 Gy cause significant and long standing injury to the surrounding area [9,

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8831406/

For RT-induced rectal injury, the early phase (i.e., acute radiation proctitis) is characterized by mucosal inflammatory cell infiltration; however, the late stage is mainly characterized by regenerative and fibrotic changes. -- https://www.gastrojournal.org/article/S0016-5085(20)35318-X/fulltext

The mucosa of the GI tract is highly proliferative. As per the literature, enterocytes have the highest turnover rate of any fixed cell in the body [42]. Hence, the rapidly dividing mucosal stem cells present within the crypts of Lieberkühn are highly susceptible to radiation injury

There are two types of inflammation:

Acute inflammation: The response to sudden body damage, such as cutting your finger. To heal the cut, your body sends inflammatory cells to the injury. These cells start the healing process.

Chronic inflammation: Your body continues sending inflammatory cells even when there is no outside danger. For example, in rheumatoid arthritis inflammatory cells and substances attack joint tissues leading to an inflammation that comes and goes and can cause severe damage to joints with pain and deformities.

What Can be Done

Normally, inflammation is caused by an underlying factor. By treating the root cause, the inflammation typically subsides. In my case, the underlying factor is the radiation itself, which has caused 'injury' to my colon. Similar to any 'injury,' there is only so much one can do to promote 'healing'; in most cases, it takes time for things to heal.

The good news is that they are classifying my inflammation as acute, rather than chronic, and they expect it to resolve over time. If it doesn't resolve, then we enter the chronic stage, and more drastic measures will be taken. The doctors are advising me to stay calm, as this should eventually resolve.

Mucositis

Mucositis not only damages the existing cells in your mucosa, but also their ability to replicate themselves and heal. This means that parts of your body that normally require that protective barrier are now exposed to irritation from their everyday functions. In your digestive system, that’s eating. These parts are also more vulnerable to infection.

Meanwhile, my quality of life sucks!

Outstading Issues

Why was the radiation so descructive? Was I over radiated or was I just really senstive? I need to find and answer to that.

A particular good article about the progression from proctitis to fistula

these observations strongly suggest that radiation proctitis is the precursor for fistula development and, as such, must be managed aggressively.

Links

• National Library of Medicine - Radiation Proctitis
• Proctitis Management
• Radiation Enteritis
• Pelvic Radiation Disease
• Radiation Fibrosis

Proctitis can cause Peripheral Neuropathy

Baptist Hospital ER

Dr. Cory Pence. I got in very quickly but still spent 4 hours there.

Diagnoses

• Intestinal inflammation due to radiation
• Inflammation of bladder
• Inflammatory disease of prostate, unspecified
• Dehydration
• Urinary tract infection
• Low blood potassium

I had to go becuase of a UTI which kept me from urninating. They said there was not much they could do with the other things caused by the radiation.

Major Finding from the CTscan

There is minimal distention of the bladder with diffuse bladder wall thickening, surrounding fat stranding, and prominent mucosal enhancement. There is also wall thickening of the distal sigmoid colon and rectum with surrounding fat stranding. There is presacral edema. No definite localized collection is seen. There is fat stranding in the anterior subcutaneous fat of the pelvis. Prostate is ill-defined. Metallic densities are seen in the prostate. Seminal vesicles are not clearly enlarged. There is mild prominence of pelvic vasculature. Pelvic lymph nodes do not appear significantly enlarged.

Findings suggestive of a diffuse inflammatory process in the pelvis with wall thickening and fat stranding involving the distal colon, rectum, and urinary bladder. There is also anterior subcutaneous fat stranding, presacral edema, and the prostate is ill-defined. These findings could be related to changes secondary to reported radiation for prostate carcinoma versus a diffuse infectious or inflammatory process

Covid and Flu Shot

Revived my covid and flu shots up at the Towne Apothecary. The pharmacist was very nice. My arm hurts from the covid shot.

Medication for Proctitus

I've had a hard time for the last month. Rather than my symptoms getting better they seem to be getting worse. Dr. An prescribed this yesterday, we'll see how it goes.

Completed Radiation

I completed radiation therapy today. I was supposed to end last Friday but the machine was down so I had to come back today. This last week was kind of hard and Corby and to drive me down in the van because I couldn't make the hour drive without the bathroom.

I'm Glad this is Over!

Link to How Radiation Works

Intestinal Distress

I've been having problems but yesterday about 8PM I started to feel pain in my stomach. It progressed to some pretty intense intestinal bloat and pain. I didn't know if I should go to emergency room! I tried to drink a little water but had trouble keeping it down. About 2AM the intense pain had lessened.

This morning I was back to normal (loose stools) but no pain. I HAVE to start watching what I eat and eat very plain.

Imodium

I had a hard day on Thusday so I took some of this stuff Thursday evening. It works! There were times I could have used this in the past.

Follow Up with Dr. Kim

I had a follow up with Dr. Kim (not much new) and my second round of Elegard. Won't see him for another 8 weeks.

Radiation Conscent

Met with Dr. An's intern (who was very good) and she went over everything again and I signed the conscent forms

They did a CT-Scan with lasers so that they can get me situated for each dose of radiation. I had an MRI done also (the results say that the tumors are no longer visible). I don't know what that means for radiation.

Feducial Maker Placement

This morning Dr. Sprenkle placed "feducial markers" in my prostate that will be used to guide my radiation. He also inserted a "SpaceOAR" between the rectum and the prostate for protection during radiation.

I didn't feel pain but just uncomfortable for about two days after this proceedure.

Predisone In Gloucester

I'd been on the edge all winter but I had to use the nebulizer 3 times in one night. The walk-in was close, nice, and pretty quick so the experience wasn't that bad. I just hope I can keep the level down for at least the rest of the month.

The Dr. (young) gave 5 days of 40mgs of predisone and 2 inhalers. If I were smart I'd try and keep those inhalers as a stash.

Biologics I have taken

• Enbrel
• Humira
• Tremfiya
• Stelara
• Sykrizi
• Dupixent

2nd Visit with Dr. Kim

It was a hot day and we parked the car at Wooseter Square to see the cherry blossoms and walk half hour to the appointment. He was a little late but all in all nothing to report. The medicine is doing it's job as indicated by the blood work.

Since we were planning to go away I asked the pharmacy for an extra "fill" which they did, no problem.

General Notes

I found this today:

• September 2013 - Started Humara (enbril)
• September 2013 - Colonoscopy
• myxoid cyst on my finger

Misc

Created: 2020-05-16 Saw Dr. Lipper virtually and stopped Dupixent and just went on steroid creams. Its the second day but they seem to be working.

Allergy Season

This week is going to be the very first week of warm weather. I've been taking Cetirizine HCI for about 2 weeks in the morning. We'll see how this year works out.

Starting Zytiga

I started taking zytiga today. I'm two hours in and don't feel anything so far. I think I need to watch my blood pressure.

First Eligard Injection

I had my first Eligard injection today.

Eligard is a luteinizing hormone-releasing hormone (LHRH) agonist. A drug that works by stopping testosterone production in the testicles.

It's supposed to wipe you out in three weeks. I'm also supposed to start the Zytiga this Sunday. Wish me well.

Started taking Bicalutamide

Bicalutamide is a prescription medicine belonging to a class of medicines called non-steroidal androgen receptor inhibitors.

Bicalutamide is used to treat prostate cancer that has spread to other parts of the body (metastatic).

Bicalutamide is given in combination with another medicine called a luteinizing (LOO-tee-in-ize-ing) hormone-releasing hormone, or LHRH. LHRH helps prevent the testicles from producing testosterone.

Prostate Treatment Options

I just saw this today but is would be useful for many of those earlier in their decision making process. It came from an article in American Family Physian a journal for general practioners. The article Localized Prostate Cancer: Treatment Options builds a decsion tree based on your conditions. There is also a life expectance chart. This is an excellent article.

PSMA Scan

This is a scan to see if the cancer has escaped the prostate.

It took an hour for the radioactive stuff to circulate and the scan was about 20 minutes. It wasn't bad but had to hold my arms above my head and lie as still has possible. You know that a time like that is when you nose itches!

My Tooth Started Hurting

UPDATE: I'm not sure what it was but I was pretty sure it was broken but after several days it went away. Lucky!

Top left side molar hurts to byte down. I think I did this with popcorn again!

Had a Biopsy

I had the prostate biopsy done today. It did not hurt as much as it was very "uncomfortable". Biopsy was a 8 AM and I slept most of the afternoon when I got home. All in all wasn't bad. They did a good job at Dr. Sprenkle's office.

Prescription for Albuterol

Albuterol Sulfate HFA 108 (90 Base) MCG/ACT Inhalation Aerosol Solution

Albuterol Sulfate Inhalation 1.25mgSolution

Filled

• 2024-11-21 Puffer Bethlehem
• 2024-06-06 Puffer and Nebulizer - Bethlehem - Puffer RX# 891090
• 2024-05-09 Puffer and Nebulizer - Bethlehem
• 2024-02-06 Nebulizer Solution - Bethlehem
• 2024-02-04 Bethlehem ( 1 left )
• 2024-01-06 Bethlehem
• 2023-12-12 (3 left)
• 2023-11-10 (non left)
• 2023-10-17 (1 refill left)
• 2023-? Bethlhem
• 2023-04-? Glouster VA.
• 2023-03-29
• 2023-02-10
• 2022-07-22

Could Not Breath

I had to use the nebulizer four times yesterday and want to Saloua for predisone today. We'll see how long that lasts.

Eczema Flair

I don't know why but I my skin is flaring and my lungs are touchy. We'll see how long before it gets bad.

MRI

The MRI indicated that I had a PI-Rad-Score of 4 which means I have a 75% chance of cancer.

Tested Positive for Covid

Since this thing hit I haven't had it but Corby had it two weeks ago in Kentucky. I felt something tonight and took a rapid test and sure enough it came back positive. We were supposed to leave tomorrow for Gardner. Oh well...

Prostate Screening

I got screened again!

the relative 10-year survival rate is 98% the relative 15-year survival rate is 96%

My Prostate Rise

    23-02-27 - 14.3
    22-11-29 - 12.1
    22-09-07 - 10.2
    22-08-19 -  9.9
    20-12-24 -  6.1
    19-11-20 -  4.0
    17-10-26 -  3.2
    13-08-27 -  1.8
  

Treatment Option

A good overview of prostate treament I wish I had seen this at the very beginning.

Warning about Over Treatment of Prostate Cancer

"(The) harms of screening include adverse effects from prostate biopsy, over diagnosis and over treatment, and anxiety. One-half of screen-detected prostate cancers will not cause symptoms in the patient's lifetime, and 80% to 85% of men who choose observation will not die from prostate cancer within 15 years. Adverse effects of radical prostatectomy include preoperative complications, erectile dysfunction, and urinary incontinence. Radiation therapy can cause acute toxicity leading to urinary urgency, dysuria, diarrhea, and rectal pain; late toxicity includes erectile dysfunction, rectal bleeding, and urethral stricture. Despite variations across guidelines, no organization recommends routine PSA testing, and all endorse some form of shared decision-making before testing. If screening is performed, it should generally be discontinued at 70 years of age."

- American Academy of Family Practice PSA testing guidelines

Skin Take Two

Since I wrote that last post I got a spider bite on my foot but I think it has caused my eyes, nose, and lips to swell and itch. Can't win.

Eye Care

Dr Cinthea Covey

Prescription Date: February 28, 2022

OD -0.25 +0.50 x 180
Add: +2.75

OS Plano +0.50 × 10
Add: +2.75

Bacteremia in Portand OR

MSSA Bacteremia
Presumed Infective Endocarditis

Pt presented with fever, abdominal pain and elevated c-reactive protein. Cultures of blood grew MSSA. CT scan was mostly unremarkable with a mildly nodular liver, simple renal cysts, and small right pleural effusion. Pt was started on IV vancomycin. Infectious disease was consulted and they narrowed antibiotics to IV cefazolin.Transthoracic echocardiogram unremarkable. Last fever before discharge was 07/27. Repeat blood cultures negative. Peripheral intravenous central catheter was placed for long term parenteral antibiotics of 4-6 weeks. As pt was travelling across the country before his arrival, he opted to stay in town for the remainder of his treatment. The following was recommended upon discharge:

• 6 weeks IV cefazolin every 8 hours
• home infusion arranged and will meet with patient and wife at his temporary residence on 7/31/21
• follow up Dr Eric Chang

                Sunday 1 - Walked to the UC and into  the ward by 6AM. They start from
  scratch, blood cultures and ct-scan). The emergency nurse is giving  me

            

Abdomen Problems

I've strained a muscle in my abdomen. Below is one of the best images I have seen. My problem seems to be in the top right side.