Hello All - First Post Please Share Your Thoughts

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Green Tea
Posts: 419
Joined: Mon Oct 24, 2016 10:48 am

Re: Hello All - First Post Please Share Your Thoughts

Postby Green Tea » Tue Apr 27, 2021 10:24 am

Good luck to your brother with his PET/CT scan tomorrow! He should be sure to follow his PET/CT instructions closely so that a good, clean scan image is produced thereby allowing the surgeon to accurately evaluate the feasibility of Cyto-Reductive Surgery (CRS). He should be sure not to wear any clothes with metal buckles, metal clasps, metal eyelets, metal zippers, etc., because they might cause problems with the CT scan part of the procedure. Also, he should try not to fidget or move around during the PET part of the procedure because that might blur or displace the nodule images.

Preparing for your PET/CT scan
https://www.dana-farber.org/health-library/articles/preparing-for-your-petct-scan/

Preparing for Your PET-CT Scan
https://www.cancer.net/blog/2019-04/preparing-your-pet-ct-scan

PET/CT Scan: How to Prepare, What to Expect & Safety Tips
https://radiology.ucsf.edu/patient-care/prepare/pet-ct

How to prepare for a PET scan
https://www.envrad.com/how-to-prepare-for-pet-scan/

PET scan patient instructions
https://www.craimaging.com/media/acoflun1/pet-patient-instructions.pdf

DeeMeee
Posts: 19
Joined: Sun Apr 04, 2021 8:03 pm

Re: Hello All - First Post Please Share Your Thoughts

Postby DeeMeee » Tue Apr 27, 2021 11:02 am

Thanks Green Tea!

My brother would soooo rather your tips on preparing for his CT/PET Scan!
I read what foods he should avoid day before, and he was not happy with my no’s! I said, nothing that will irritate and cause inflammation, in case that inflammation hides a possible node or smaller tumor!
It’s funny, for myself, I never look so far into best form for testings. It was interesting to see all the ways that could effect a good and accurate scan reading... exercise or exertion, being cold, carbs, fruits, vegetables, sugar, caffeine.
Yikes lol ! I promised him anything he wanted after his test!

I appreciate your good vibes for his test!
He says he wants this to be 3rd, in good news for the past week!
1. MSi H 2. Clear endoscopy 3.___ ! He’s a betting man!

Healthiest Good Vibe Week To All !
Dee
sister to 57yo m
3/21 CT blockage susp of ileal adenocarcinona mass w nodal mets & perit carcinomatosis
3/21 lap R hemi innumeral mets peritoneal nod 9.5 cm ileocecal mass. Remvd mass, apnx,12i sm int 6i l int nodules CEA 7.8
3/21 Path:Stage 3c pt4b pn2b signet ring cell carcinoma prly diff close mrg 18/28 n
4/21 CEA 3.9 FOne MSI H TMB 13mb KRAS G13D NRAS wt
4/21 Endsc Rules out UGI prmy: bpy:mild peptic duodenitis
4/29 surgeon consult; reassess 6mth for surgery candidate
5/3 Start of Pembrolizumab

User avatar
Green Tea
Posts: 419
Joined: Mon Oct 24, 2016 10:48 am

Re: Hello All - First Post Please Share Your Thoughts

Postby Green Tea » Wed Apr 28, 2021 11:47 pm

Good morning, Dee,

Today is Thursday, April 29th. Is your brother all prepared with his list of questions for today's appointment with the surgeon?

If the surgeon is proposing EPIC within the context of a clinical trial, then in the U.S. this falls under the Federal law for Informed Consent -- CFR Title 21, Part 50.25. One thing your brother could do during the meeting is to ask to see the official Informed Consent form(s) that he will eventually be required to sign. There may be more than one -- one for CRS, one for EPIC, one for anaesthesiology, etc.

Elements of Informed Consent (Federal law)
https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/CFRSearch.cfm?FR=50.25

What to ask your doctor or surgeon
Suggestions on what to ask your doctor or surgeon before treatment include:
  • Exactly what procedure will be performed on you?
  • What is the aim of the procedure? For example, will the procedure offer a diagnosis, cure or pain relief?
  • What are the expected benefits of the procedure?
  • What will happen during the procedure?
  • Will general or local anaesthesia be needed and what are the associated risks of the chosen anaesthesia?
  • What is the success rate for the procedure?
  • What side effects can you expect? For example, how much pain will you have afterwards?
  • Are there any possible risks? For example, could there be accidental damage to other areas of the body during the operation?
  • What are the possible complications of the procedure? For example, is infection of the surgical wound likely?
  • Do you have individual risk factors? For example, factors such as age, general health and other chronic medical problems may increase your risk of complications in some cases.
  • How long will it take to recover? When can you resume normal everyday activities, work and exercise?
  • Are there other treatment options that may offer good alternatives; for example, a different type of medical procedure, prescription medications or lifestyle changes (such as regular exercise or dietary modifications)?
  • What will happen if you have no treatment?
Reference

Informed Consent
https://legaldictionary.net/informed-consent/

Undisclosed Surgical Incentives Compromise Informed Consent (HIPEC)
https://journals.library.columbia.edu/index.php/bioethics/article/view/6481

DeeMeee
Posts: 19
Joined: Sun Apr 04, 2021 8:03 pm

Re: Hello All - First Post Please Share Your Thoughts

Postby DeeMeee » Fri Apr 30, 2021 8:41 am

Good Morning Green Tea,

It’s so nice of you to think of my brother, on the day of his appointment. It was a looonnng day, appointments were backed up and the 1 hr 25 minute just to get into the office was not making my brother calm and fuzzy.

He didn’t get any troubling news, so I take it as a long, but not bad day for him all in all.

Surgeon states scans showed nothing surprising or unexpected, based on what they knew beforehand. He wants a colonoscopy, prior to surgery.
He is opting to monitor how his treatment goes, revisit at 2 month scan and intervals thereafter.
He feels it is best to complete a planned 6 month treatment regimen, wait a month and then go in, unless reaction to treatment or signs of unstable, progressing disease.
His response to questions of waiting, treatment that can take out what may be microscopic-non visible is best, as he can only remove what he can see.
EPIC is the plan, outside of the clinical trial for appendix, he only performs HIPEC with ovarian cancer.
There was no real discussion on chemotherapy over immunotherapy, he bows to my brother’s medical oncologist on that.

He prescribed Prevalite, an off purpose use of the cholesterol medication, with hopes it will help my brother with lingering post surgical gi symptoms.

While my brother waited for him, between NP and others, he made a call to original hospital’s pathologist, regarding something I hadn’t noticed in the report. He wanted clarification, on reason appendix was not notably mentioned in his report. Reason being, the continued attempt to identify origin. He stated it could be significant, if there was no sign of the appendix in the tumor.

I found his surgeon knowledgeable, thorough, attentive to a broad span of details, and clear on his plan and why. My brother walked out saying ,so this was a waste of an appointment. Mostly my brother wants to hear, all a big mistake. We talked through his feeling about the appointment, peeling it away, removing the long wait, going through what was discussed medically. I think he felt better about the surgeon and the appointment after, but how can I be sure.

Onward to Monday, medical oncologist appointment, firm decision on Immunotherapy vs Chemotherapy, start of treatment.

The first day of his slaying this beast, that is messing with him from within!

Let The Sun Shine !
Dee
sister to 57yo m
3/21 CT blockage susp of ileal adenocarcinona mass w nodal mets & perit carcinomatosis
3/21 lap R hemi innumeral mets peritoneal nod 9.5 cm ileocecal mass. Remvd mass, apnx,12i sm int 6i l int nodules CEA 7.8
3/21 Path:Stage 3c pt4b pn2b signet ring cell carcinoma prly diff close mrg 18/28 n
4/21 CEA 3.9 FOne MSI H TMB 13mb KRAS G13D NRAS wt
4/21 Endsc Rules out UGI prmy: bpy:mild peptic duodenitis
4/29 surgeon consult; reassess 6mth for surgery candidate
5/3 Start of Pembrolizumab

User avatar
Green Tea
Posts: 419
Joined: Mon Oct 24, 2016 10:48 am

Re: Hello All - First Post Please Share Your Thoughts

Postby Green Tea » Fri Apr 30, 2021 2:07 pm

DeeMeee wrote:...Surgeon states scans showed nothing surprising or unexpected, based on what they knew beforehand. He wants a colonoscopy, prior to surgery.He is opting to monitor how his treatment goes, revisit at 2 month scan and intervals thereafter...

Thanks for the update on your brother's Thursday meeting with the surgeon. I do have a few questions, however, about both the meeting with the surgeon as well as the PET/CT scan session the day before.

  • How did the PET/CT scan appointment go? Was the scan done promptly at the appointed time? The reason I ask is because the scan uses radioactive FDG as a tracer and the scan should be done at exactly the designated time, otherwise the FDG will have decayed according to its half-life schedule and may be too weak to give a good, clear PET image.
  • Did your brother get a copy of the radiologist's written scan report? Did he get a copy of the scan images themselves? Did he get a CD-ROM containing a digital version of the scan?
  • Did the surgeon go over the scan images with your brother to show him where the significant "hot spots" were?
  • Did the surgeon say what criteria he was using to evaluate the scan? For example, was he using something like the PCI assessment tool developed by Dr. Sugarbaker, or was he using one of the other alternative assessment tools?
  • Did the surgeon give any indication what the PET/CT scan should look like for him to be confident in scheduling a CRS (debulking) surgery? For example, did he say anything about the importance of the size, number or location of the observed peritoneal nodules?
  • Did the surgeon say what kind of scans would be done at the 2-month intervals in the future? (CT scans? PET/CT scans? MRI scans?)
  • Did the surgeon indicate what kind of results, exactly, the 6 months of chemo treatment should produce?
If you have the time, I'd appreciate some feedback on the issues above.

Thank you.

User avatar
Green Tea
Posts: 419
Joined: Mon Oct 24, 2016 10:48 am

Re: Hello All - First Post Please Share Your Thoughts

Postby Green Tea » Mon May 03, 2021 2:45 am

Notes on Keytruda (pembrolizumab) for today's meeting with the oncologist.
....
SELECTED INDICATIONS for KEYTRUDA:
Adult patients with 
  • MSI-H or dMMR Cancer, or
  • MSI-H or dMMR CRC, or,
  • TMB-H Cancer
ADMINISTRATION by IV-INFUSION ONLY:
  • 200 mg every 3 weeks*, or
  • 400 mg every 6 weeks*
    .......
    *Administer diluted solution intravenously over 30 minutes through an intravenous line containing a sterile, non-pyrogenic, low-protein binding 0.2 micron to 5 micron in-line or add-on filter.
NOTE:
If IV administration is at the 200 mg dose level then this means:
= Eight  30-minute infusions required over the 6-month period (24 weeks).

If IV administration is at the 400 mg dose level then this means:
= Four 30-minute infusions required over the 6-month period (24 weeks).

DeeMeee
Posts: 19
Joined: Sun Apr 04, 2021 8:03 pm

Re: Hello All - First Post Please Share Your Thoughts

Postby DeeMeee » Mon May 03, 2021 5:25 am

Thank you so much for thinking of my brother today, Green Tea!

Scurrying to get on the road.
Will update you later tonight.

Hoping for a Best Day Possible!

Take Care
Dee
sister to 57yo m
3/21 CT blockage susp of ileal adenocarcinona mass w nodal mets & perit carcinomatosis
3/21 lap R hemi innumeral mets peritoneal nod 9.5 cm ileocecal mass. Remvd mass, apnx,12i sm int 6i l int nodules CEA 7.8
3/21 Path:Stage 3c pt4b pn2b signet ring cell carcinoma prly diff close mrg 18/28 n
4/21 CEA 3.9 FOne MSI H TMB 13mb KRAS G13D NRAS wt
4/21 Endsc Rules out UGI prmy: bpy:mild peptic duodenitis
4/29 surgeon consult; reassess 6mth for surgery candidate
5/3 Start of Pembrolizumab

DeeMeee
Posts: 19
Joined: Sun Apr 04, 2021 8:03 pm

Re: Hello All - First Post Please Share Your Thoughts

Postby DeeMeee » Thu May 13, 2021 9:55 am

Green Tea wrote:Notes on Keytruda (pembrolizumab) for today's meeting with the oncologist.


Hello Green Tea,

Apologies for the week+ response, a few unrelated family emergencies have surfaced.

My brother had his conference with oncologist on Monday 5/3, as planned. The decision was kept to, beginning Pembrolizumab.
His treatment plan will be 200mg dosage administered every 3 weeks for 6 mths, CT/PET Scan at 3 mths.

His oncologist was expecting the surgeon decision to defer surgery. 1st treatment went off with no hitches, my brother did Fantastic ! Thankfully, no obvious side effects have occurred, not during, day of, or in the week + that has passed.

The only possible obvious attributed side effect, could be his ongoing gi symptoms, which is hard to tell because he has had them pretty consistently, since his surgery. My hope is his thyroid and liver do well, as explained they will be monitoring him closely for any detrimental effects there.

His spirits are pretty good, he is swearing off any alcohol, to avoid contributing to any negative factors that could cause. He did say he will use cannabis wax. I searched, and found some alarming reports of lessened efficacy, based on cannibas slowing the immune system while immunotherapy seeks to overdrive it. He was bummed when I brought this up. I called his oncology team, and got the call back that dr and np both feel there is no reason he can not. I’m still nervous of IF, but he welcomed the news.

A Bright Ray Of Sunshine To All
Dee

Edit** To address questions on surgeon consult.

The CT/PET Scan results were discussed at both surgeon and medical oncologist appointments. The report wasn’t great, but both stated it was not unexpected. There were two new peritoneal nodes, two that were smaller in size than previous pre surgical scan, and two that shrunk in size. There is notably, a few subcentimeter indeterminate pulmonary nodules.
sister to 57yo m
3/21 CT blockage susp of ileal adenocarcinona mass w nodal mets & perit carcinomatosis
3/21 lap R hemi innumeral mets peritoneal nod 9.5 cm ileocecal mass. Remvd mass, apnx,12i sm int 6i l int nodules CEA 7.8
3/21 Path:Stage 3c pt4b pn2b signet ring cell carcinoma prly diff close mrg 18/28 n
4/21 CEA 3.9 FOne MSI H TMB 13mb KRAS G13D NRAS wt
4/21 Endsc Rules out UGI prmy: bpy:mild peptic duodenitis
4/29 surgeon consult; reassess 6mth for surgery candidate
5/3 Start of Pembrolizumab

boxhill
Posts: 721
Joined: Fri Apr 06, 2018 11:40 am

Re: Hello All - First Post Please Share Your Thoughts

Postby boxhill » Fri May 14, 2021 11:50 am

Yay, Keytruda! Keeping all appendages crossed that he responds well--and quicckly!

I'm sure you aware at this point that there is a possibility of false progression in the first few months, as the T cells rushing into tumors and cancerous lymph nodes can bulk them up. And it can definitely take longer than 3 months so see a significant response. (One reason why my onc wanted to wait 4 months before scanning.) So if everything isn't ideal at 3 months, don't despair.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

DeeMeee
Posts: 19
Joined: Sun Apr 04, 2021 8:03 pm

Re: Hello All - First Post Please Share Your Thoughts

Postby DeeMeee » Fri May 14, 2021 12:10 pm

boxhill wrote:Yay, Keytruda! Keeping all appendages crossed that he responds well--and quicckly!

I'm sure you aware at this point that there is a possibility of false progression in the first few months, as the T cells rushing into tumors and cancerous lymph nodes can bulk them up. And it can definitely take longer than 3 months so see a significant response. (One reason why my onc wanted to wait 4 months before scanning.) So if everything isn't ideal at 3 months, don't despair.


Thank you boxhill, yes crossing everything!

I appreciate your preemptive don’t panic “what if” it doesn’t show great results on first scan. I sooo want to see a clean slate scan on first look! But will be prepared for whatever it is, and onward forward til it shows Nada !

Had you ever had a conversation with your team about cannabis wax and Keytruda ? I’m still worried, even though my brothers team gave him the okie dokie.

Continue feeling well and enjoying !

Bright Sun Shiny Days To All !
Dee
sister to 57yo m
3/21 CT blockage susp of ileal adenocarcinona mass w nodal mets & perit carcinomatosis
3/21 lap R hemi innumeral mets peritoneal nod 9.5 cm ileocecal mass. Remvd mass, apnx,12i sm int 6i l int nodules CEA 7.8
3/21 Path:Stage 3c pt4b pn2b signet ring cell carcinoma prly diff close mrg 18/28 n
4/21 CEA 3.9 FOne MSI H TMB 13mb KRAS G13D NRAS wt
4/21 Endsc Rules out UGI prmy: bpy:mild peptic duodenitis
4/29 surgeon consult; reassess 6mth for surgery candidate
5/3 Start of Pembrolizumab

boxhill
Posts: 721
Joined: Fri Apr 06, 2018 11:40 am

Re: Hello All - First Post Please Share Your Thoughts

Postby boxhill » Sun May 16, 2021 11:50 am

I've actually never heard of cannabis wax! I will say that my oncologist had no problem giving me a medical marijuana card so that I could use it to help with pain. (Athough as it happened I never did. I do smoke pot occasionally, much less frequently than back in the 70s, :shock: )
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

DeeMeee
Posts: 19
Joined: Sun Apr 04, 2021 8:03 pm

Re: Hello All - First Post Please Share Your Thoughts

Postby DeeMeee » Thu Jun 10, 2021 8:01 pm

Hey there guys,

I was wondering if anyone could say, if this experience is a sign good bad or otherwise.
My brother has had persistent ongoing diarrhea to constipation with abdominal pain and bloat, since his right hemi surgery 3/19.
His diarrhea has become much less frequent of late, maybe once in a day every 5-6 days. The abdominal pain in the right side has become the most prominent symptom, ranging from 3-8 on a pain spectrum. At times it intensifies almost immediately after consuming food, and only subsides once he is able to have a bowel movement. He has gone back to leaning towards, soft to liquids, after a post surgical consult with his surgeon last Thursday, who had felt it wasn’t colitis.
Now a new cause these past two days, is liquids, such as soup or ensure, previously not a trigger.
He has lost 9 lbs since 5/24, and is really having a hard time with loss of appetite, to try to avoid the pain.
A CT/PET Scan unexpectedly symptom necessitated, for tomorrow, is to reveal a possible root cause, such as scar tissue, new tumor growth/blockage, colitis etc
My hope is, there is nothing notable on the scan, and the cause is the immunotherapy doing what is meant by ramping up his system. But even if that is the case, if his side effect is intolerable, then what? Would skipping a treatment, help the severity to bring it down? Or would his only option be to try a steroid plan and try going back on, or would this be considered failed and he would go to chemotherapy treatment plan,with the hopes he can tolerate it?

My brother, if it isn’t postponed, will be having his third treatment of Pembrolizumab on Monday. Offsite Telehealth appointment with his oncologist, between bloodwork and treatment, to discuss CT results and next step.

I wish I could take his pains for him, and tell him with any confidence, this will pass. He is not in a good place, his mind brings him all the possibilities, is this the disease coming on more aggressively, he is shocked at his loss of weight and strength.

Healthy Thoughts To All
Thanks
Take Care
Dee
sister to 57yo m
3/21 CT blockage susp of ileal adenocarcinona mass w nodal mets & perit carcinomatosis
3/21 lap R hemi innumeral mets peritoneal nod 9.5 cm ileocecal mass. Remvd mass, apnx,12i sm int 6i l int nodules CEA 7.8
3/21 Path:Stage 3c pt4b pn2b signet ring cell carcinoma prly diff close mrg 18/28 n
4/21 CEA 3.9 FOne MSI H TMB 13mb KRAS G13D NRAS wt
4/21 Endsc Rules out UGI prmy: bpy:mild peptic duodenitis
4/29 surgeon consult; reassess 6mth for surgery candidate
5/3 Start of Pembrolizumab

DeeMeee
Posts: 19
Joined: Sun Apr 04, 2021 8:03 pm

Re: Hello All - First Post Please Share Your Thoughts

Postby DeeMeee » Tue Jun 15, 2021 3:53 pm

My brother went to urgent care on Sunday, he and I both thought he was for certain dehydrated. Second CT in three days,this one chest to pelvic, looking for blockage and source of r/s pain and severe bloating, causing him not to eat. No visible blockage, immense amount of new disease and growth, especially in abdomen, abdomen full of fluid. Too much and too many satellite locations for surgeon to consider going in.
Placed port, first FOLFOX treatment, earlier today.
Oncologist words, A disappointing scan, immunotherapy failed, presented treatment plan with what we both heard as not a lot of optimism. Having IV for the last few days, has brought back color and plump into his skin. He went from no pain medication since Tylenol by mouth only first night of surgery to a button and keep upping dosage of iv opioids. I’m so worried about his discharge, and his ability to continue gaining strength. And what else we need to do to start seeing a beat back of the demon inside. Stunned that Pembrolizumab looks to have failed.
Tough Few Days
Last edited by DeeMeee on Tue Jun 15, 2021 6:33 pm, edited 1 time in total.
sister to 57yo m
3/21 CT blockage susp of ileal adenocarcinona mass w nodal mets & perit carcinomatosis
3/21 lap R hemi innumeral mets peritoneal nod 9.5 cm ileocecal mass. Remvd mass, apnx,12i sm int 6i l int nodules CEA 7.8
3/21 Path:Stage 3c pt4b pn2b signet ring cell carcinoma prly diff close mrg 18/28 n
4/21 CEA 3.9 FOne MSI H TMB 13mb KRAS G13D NRAS wt
4/21 Endsc Rules out UGI prmy: bpy:mild peptic duodenitis
4/29 surgeon consult; reassess 6mth for surgery candidate
5/3 Start of Pembrolizumab


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