I’m nervous about my Genomic Results plus anyone want to share their experience?

[Shorehousejam]

Had my prostate removed and had another round of Germline mainly Genomics testing done…

Gleason 9 Stage 4 Grade 5

Firmagon @28 days, Zytiga with Prednisone Daily, Taltz monthly for severe plague psoriasis

VIT D 6 weeks, once a weeks, 50k units, no prolia or Z Acid for bones, my teeth need work

Metformin 500mg daily found 1000 was too much for myself

PSA <0.06

I have been bleeding since July from rectum. MO refuses to do pet scan, although he did a CT Scan with significant Decrease in disease in all nodes. No new metastatic lesions.

Since CT dated 05/31/2023,

Results CT Scan

1. No significant change in size of mass in the left prostatectomy bed.

2. Unchanged small pelvic lymph nodes.

3. Unchanged mixed lytic/sclerotic expansile lesion in the right iliac bone.

4. Findings suggestive of acute uncomplicated sigmoid colitis/diverticulitis. Correlation with clinical symptoms is recommended.

—-

The gastroenterologist is doing another CT scan to see if it’s diverticulitis, no bacteria found in stool test, given an antibiotic as it may of been an infection and gastroenterologist wants to hold off for now on an endoscopy and colonoscopy as the procedure could cause a perforation, cause more complications or God Forbid a bleed out.

I’m scared out of my mind, ah, but hide it well. My wife is constantly reading medical journals.

 In reference to the mutations and reading about Neuroendocrine cancer, since I have been on Firmagon and Zytiga with Prednisone since 07/2022 .

I’m worried.

I also had a CHA test

Component Your Value

Chromogranin A 117 ng/mL

0 - 103 ng/mL H standard

I was flagged as H

My Carcinoembryonic Antigen <0.5 ng/mL this test was very low, good news.

<=3.0 ng/mL

Non-Smoker: <= 3.0

Smoker: <= 5.0

My LDH was Component Your Value Standard Range Flag

Lactate Dehydrogenase 168.0 U/L

The Germline was done on the pathology from my original transperineal biopsy 07/2022

Tumor genomics - Oncomine targeted panel from pre-treatment prostate biopsy with

Tier 2 variants in p53 and CDH1,

Tier 3 in DNMT3A, HRAS, WT1. TSO500

After My Davinci Radical Prostatectomy in 03/2023 with 8 lymph nodes removed all negative for PCA and I had/have 3 lytic lesions mostly resolved in pelvic area hip /lytic/sclerotic expansile lesion in the right iliac bone, according to my Medical Oncologist.

Targeted panel from post-treatment prostatectomy with

Tier 1 ATM frameshift alteration,

Tier 2 FOXP1-BRAF fusin, PTEN frameshift alteration, FOXA1 frameshift alteration,

FBXW7 missense, SETD2 frameshift alteration.

TMB high (17.4 muts/Mb),

MSI stable; multiple VUS (BLM, CUX1, EML4, EPHB1, FGFR2, FOXA1, GRIN2A, JAK1, SMARCA4).

Discussed implications.

The genomic profile was somewhat discussed but no mention how bad it really is…

This why I’m nervous out over it.

I am going for a second opinion on my PCA with an MO from MSK as well as a gastroenterologist from MSK and Going to Mt. Sinai for another MO opinion

[Medline]

Some side effects may occur when using Taltz (ixekizumab), including rectal bleeding, severe diarrhea, and severe stomach pain. In rare cases, this drug has been associated with inflammatory bowel disease (IBD), including crohn's disease or ulcerative colitis [pubmed.ncbi.nlm.nih.gov/333..., pubmed.ncbi.nlm.nih.gov/366..., pubmed.ncbi.nlm.nih.gov/314..., pubmed.ncbi.nlm.nih.gov/327...]. CgA and CEA levels may also be elevated in IBD patients and do not necessarily indicate the presence of cancer.

[Shorehousejam in reply to Medline]

Yes, my wife found that too, I responded so well to this medication after 6 months I start bleeding? It’s odd

[Shorehousejam]

   cesanon Hi I’m at NYC NYP Cornell above are results from CT Scan, my wife has asked for a Pet PSMA scan but MO doesn’t think I need as He feels my disease is stable. My wife messaged him back and said bleeding from rectum for 3 months is Not a sign of stable disease. It’s very frustrating to beg for scans that are more sensitive to psma than a CT Scan. This is a cancer care of excellence NYP Cornell both the Medical Oncologist and Gastroenterologist are there, My Primary is a Director at Montefiore Hospital annex site.

I feel so confused with all this information, The mutation results worry me the most.

I have an appointment with MSK Medical Oncologist and Gastroenterologist as well as a second opinion at Mt. Sinai in NYC.

The waiting is the worst part of it all..

[PCaWarrior]

High TMB with DNA repair mutations might indicate immune therapy. Ask your MO.

ncbi.nlm.nih.gov/pmc/articl...

You have ATR frameshift

[Oatmeal2]

I highly recommend MSK. Not sure who you have appointments with, but Dr. Hans Gerdes is a great gastroenterologist and Dr. Abida for MO.

[Shorehousejam in reply to Oatmeal2]

Thank you, how long have you been dealing with this disease?

[Oatmeal2]

My spouse was recently with diagnosed with prostate cancer. He is getting ready for the marker procedure to be followed by the simulation then 5 weeks of IMRT. Unfortunately he went through gastric cancer 7 years ago. He was cured of that horrible disease but now another bump in the road. He was treated at MSK for the gastric and I can unequivocally say, if you are in nyc that is the place to go for cancer treatment. The doctors are excellent, as well as all of the supporting nursing staff. In all of the years going for treatment and follow up did we encounter anyone with a bad attitude or disrespectful

[j-o-h-n]

Well you have a good army behind you at MSKcc. I wish you well and hope your bleeding finally stops.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/08/2023 6:41 PM DST