Re: New guy with old questions.

[Peregrine]

... On Friday I go in for port implant ... Joe

https://umiamihealth.org/-/media/sylvester-comprehensive-cancer-center/pdf/portacath-pamphlet.ashx

https://www.3m.com/3M/en_US/medical-us/disinfecting-port-protectors/

https://www.amazon.com/port-a-cath/s?k=port-a-cath

[JP66]

... On Friday I go in for port implant ... Joe

https://umiamihealth.org/-/media/sylvester-comprehensive-cancer-center/pdf/portacath-pamphlet.ashx

https://www.3m.com/3M/en_US/medical-us/disinfecting-port-protectors/

https://www.amazon.com/port-a-cath/s?k=port-a-cath

You are just full of perfect links and info Thanks again!!

Joe

[Peregrine]

... Monday I'm scheduled for my first infusion of Leucovorin, Irinotecan, Oxaliplatin, and Fluorouracil...
Joe

Personalized Care and Support from Oncology-Certified Nurses at Whittinger Cancer Center

Nurses with additional training in the needs of people undergoing cancer treatment (oncology certification) will monitor and assist with your therapy:

You benefit from their careful attention to your needs:


1. Before treatment: Nurses take time to get to know you and explain care recommendations. If you have questions, we provide answers and other helpful information to prepare you for your first infusion session.
   .
   
2. During treatment: Nurses keep a careful eye on you during infusions. If you do start feeling unwell, oncologists are often just a few steps away.
   .
3. After treatment: If side effects make you sick, we are quick to coordinate services that help you get relief, including same-day office visits.
   

Reference

Hi Joe -

It's now Friday, and presumably you are scheduled to start your 6 cycles of FOLFIRINOX on Monday. I just wanted to check to make sure that your medical oncology-certified Nurse Navigator has already briefed you on the requirements for your first infusion session as promised in (1) above. Do have all the information you need in order to be prepared for your initial infusion session?

If not, just let us know, and we might be able to provide a few suggestions.

Thanks.

[Rock_Robster]

Also it’s a small thing but I’m going to be pedantic as accuracy matters with these things - worth checking if you’re doing FOLFIRINOX or FOLFOXIRI. It’s the same drugs but the dosages are different; the former is usually used in pancreatic cancer and the latter more so in colorectal cancer.

[Peregrine]

Also it’s a small thing but I’m going to be pedantic as accuracy matters with these things - worth checking if you’re doing FOLFIRINOX or FOLFOXIRI. It’s the same drugs but the dosages are different; the former is usually used in pancreatic cancer and the latter more so in colorectal cancer.

Rob,

Thanks for the reminder. Yes, accuracy does indeed matter, especially with really tough regimens like these two.

There are several past references on this message board to the differences between the two:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=66339&p=513624&hilit=FOLFIRINOX+FOLFOXIRI.#p513628

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65469&p=508591&hilit=FOLFIRINOX+FOLFOXIRI#p508591

So it looks like the version designed specifically for colorectal cancer is the one with a lower overall dose, but with an added 5FU bolus. However, there have been some CRC patients here who have been put on the higher-dose, more aggressive FOLFIRINOX regimen.

So, I think it would be important to bring this issue up now with the prescribing oncologist to verify exactly which dose levels and which sequences of infusions are being planned. In other words, is the plan really to use the higher dose pancreatic cancer regimen in the hopes that it will be well-tolerated and that it will be strong enough to wipe out the two problematic Common Iliac Lymph Nodes (CILNs)?

I would think that these issues should be discussed and addressed before starting the regimen.

What do you think?

[JP66]

It's now Friday, and presumably you are scheduled to start your 6 cycles of FOLFIRINOX on Monday. I just wanted to check to make sure that your medical oncology-certified Nurse Navigator has already briefed you on the requirements for your first infusion session as promised in (1) above. Do have all the information you need in order to be prepared for your initial infusion session?

If not, just let us know, and we might be able to provide a few suggestions.

Thanks.

Yeah. My care team is super attentive, calling me at home at least once a day if not twice just to be sure there isn't anything they can do and checking on me. I obviously don't have much to compare except I did briefly go to MSK and I have run into one woman who moved from Arizona who claims that the care givers here are much more attentive than the care givers she had in Arizona. Again, I don't have much to go on, but I feel extremely fortunate to have found my team that includes Dr.Frank and Dr. Gilbo.

Also it’s a small thing but I’m going to be pedantic as accuracy matters with these things - worth checking if you’re doing FOLFIRINOX or FOLFOXIRI. It’s the same drugs but the dosages are different; the former is usually used in pancreatic cancer and the latter more so in colorectal cancer.

It's definitely FOLFIRINOX. Interesting side bar, it is the same chemo plan that my 3 doctors at MSK were originally planning as well.

I will be sure to ask on Monday about specifics of my regimen.

Joe

P.S Lucky me just got back from my port implant. Here's hoping I can get it removed someday for good reasons

[Peregrine]

...
It's definitely FOLFIRINOX. Interesting side bar, it is the same chemo plan that my 3 doctors at MSK were originally planning as well...

Yes, and one of MSKCC's success stories is that of ColonTalk member mariane, who, according to her signature, was treated with FOLFIRINOX back in 2016 and has been NED ever since 2016 !

[rp1954]

Might I ask what "polite" chemo is? I'm very interested in discussing this topic with my doctors, but its a term I'm unfamiliar with at the moment.

"Polite chemo", reflects my struggle to get the difference of chemical choices across. It is not a recognized or familiar term to others. From a standard view, these are generic drugs (and nutrients) used off label, based on experimental and integrative medical literature.
"Polite chemo" simply represents our ground truth of few side effects for metronomic and chronomodulated immunochemo(s) built around mild oral drugs, potent oral nutrients, and IV vitamin C. New doctors never could look at my wife, even point blank, right under their nose, and realize that she was on 3x daily chemo. Polite, also means home based, with more flexible monitoring and better behaved blood work.

Typical conversation, looking her over.
Q: "How many months have you been off chemo?"
A: "This morning" ( several hours ago)

Although we used the asian chemo drug, UFT - an earlier oral 5FU prodrug (1984), Xeloda regimens have been identified to achieve similar and even more aggressive doses in ADAPT ++ through ADAPT ++++, again names specific to this board. ADAPT treatments were experimental Xeloda+Celebrex regimens partly published in several papers and a patent by Dr Edward Lin (MD Anderson, then U Washington). The +++s reflect modifications here to intensify the chemo, reduce side effects and improve immune aspects. Immunochemo in essence seeks to use chemo killed cancer cells as samples for more and better immune responses, continuously in our regimens.

Historically, most stage 4 lymph nodal patients, with refractory mets, have not been curative with Folfox/Folfiri + Avastin alone.
To an extent, more patients have qualified for oligo nodal surgery after these cyclical chemo, but still lots of failures. With Folfoxiri, patients seem to have better odds of curative treatment, including surgery, but still there are the patients that will fail - then what? I suspect that the most risky are identifiable in the blood tests and might be better treated with some degree of continuous treatment before and after surgery or Folfoxiri, or even in lieu of cyclical heavy chemo treatments as we did.

[rp1954]

Yes, and one of MSKCC's success stories is that of ColonTalk member mariane, who, according to her signature, was treated with FOLFIRINOX back in 2016 and has been NED ever since 2016 !

Mariane is a success for a broad multimodal attack on colon cancer with liver mets - including surgeries, CA199-cimetidine, HAI at MSK and refilled locally, triplet chemo (5FU, oxi-, iri-), and some integrative nutrition, walking 6 miles a day, prayer, using her blood work and spreadsheet, aggressively doing everything she could to get the best treatments.

A lot of triplet therapy successes here are KRAS wild, I am more concerned about KRAS/BRAF mutants, also simultaneously elevated levels of CA199 and CEA. Elevated CA199 for CRC is more like 25 -27 units, rather than the 37 - 40 unit cutoff based around pancreatic cancer typically quoted on lab ranges.

One other important note of Mariane was that her Dr Kemeny (MSK) chose Folfirinox to avoid Avastin in order to reduce the time between chemo and surgery, a principle that we were all in for, even more aggressively.

[DarknessEmbraced]

I'm glad that radiation shrank the lymph nodes. I hope your chemo and goes well. *hugs* I'm glad your symptoms went away.

[Peregrine]

"Fighting Cancer with Knowledge & Hope", by Dr. R. C. Frank (2012)

"Braving Chemo: What to Expect, How to Prepare, and How to Get Through It" by Dr. V. A. Zavaleta (2019)

"Chemotherapy Survivor Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)
.
What's up doc?

[JP66]

"Fighting Cancer with Knowledge & Hope", by Dr. R. C. Frank (2012)

"Braving Chemo: What to Expect, How to Prepare, and How to Get Through It" by Dr. V. A. Zavaleta (2019)

"Chemotherapy Survivor Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)
.
What's up doc?

Books ordered. Thanks!

Changed my mind now on calorie restriction. Thanks for the link to Mariane. Inspires me to walk way more than I am right now at least during the next 3 months of chemo. First day of infusion went off smoothly though I must admit I expected the pump to be smaller and lighter. Turns out I have an electric CADD-Solis VIP pump so getting too warm isn't an issue, and the length of tubing makes side sleeping on either side no problem what so ever. Here's hoping my side effects are minimal.

Who knew infusion day would be an excuse to read and watch tv for half the day without guilt

https://www.youtube.com/watch?v=titkHK8jqqU

[JP66]

Quick update not that it matters a great deal, but just so future posters might learn from my experience. I was quite worried about the side effects of FOLFIRINOX, but I've finished the my first infusion and am scheduled for my second round tomorrow AM but my side effects from the first round were relatively mild and certainly far less than I feared. Primarily I had fatigue, mild nausea, mild bouts of controllable diarrhea, and very mild neuropathy in my hands and feet and all the symptoms got better after the first 5 or 6 days.

Question: Just learning semantics. People list "rounds" of chemo. I'm scheduled for 6 infusion sessions, one every two weeks on Monday. Is that 6 rounds or do people mean two sessions equal one "round"?

One last question:

I'm for sure jumping the proverbial gun here slightly, but as of now I believe the plan from my team of doctors would be for me to undergo TME surgery in May. I'm thinking about asking to delay the surgery until the end of August, what do people here think about that request?

Obviously, I will listen to whatever my doctors have to say, and a lot will depend on what the post chemo scans show, but my reasoning is twofold. First, we (my wife and I) spend several weeks at our vacation home on a lake in Maine where I spend much of my time on the lake in my boat towing kids around on boards, skis, and tubes. I'd hate to be doing that whilst sporting an ostomy. Maybe it's not as bad as I'm imagining, but it just seems a bit off putting to me. Second, I'm under the assumption that rectal cancer is very slow growing so a 2.5 month delay would have minimal risk. Like I said I will most definitely discuss this with my surgeon when I meet with him next, but just curious to get opinions and thoughts from people here.

Thanks for reading or answering

Joe

[Peregrine]

So, I'm scheduled for a meeting with my surgical oncologist ... [February 19th] ... so I'm looking for any advice from the people active here these days...
Joe

Questions for the surgical oncologist

• How long should we wait after finishing FOLFIRINOX treatment before scheduling LAR surgery?
• Are there any special actions to take before LAR surgery ,e.g., special diet, special medications, peri-operative treatments, etc.?
• What types of baseline lab tests, scan procedures, EKGs, etc., will be required now just prior to LAR surgery?
• Will I have a meeting with the anesthesiologist prior to the surgery?
• What is the particular type of LAR that you recommend for my surgery -- open, laparoscopic, robotic, hybrid?
• Why is this particular type of surgery recommended? What are the specific advantages/disadvantages of your recommended approach?
• How long do you expect the surgery to take, from start to finish?
• Does Whittingham Cancer Center have a daVinci robot? If so, which model is it? - is it a daVinci Si (old model) or daVinci Xi (new model)?
• How many rectal cancer LAR surgeries have you done using the Whittingham Cancer Center version of the daVinci robot?
• How many trained assistants -- in addition to the surgeon-- are needed in order to carry out a robotic LAR surgery? Who at C. Anthony and Jean Whittingham Cancer Center is qualified as an oncology surgery assistant?
• Will any of the assistants be at the controls of the robot at any time during my surgery?
• How many of your prior LAR surgeries were on tumors that had been previously irradiated with the five weeks of Long Course Chemo-Radiation Therapy (LCCRT)?
• How successful were your LAR surgeries on previously irradiated rectal tumors -- e.g., surgical margins; number of lymph nodes removed; complications experienced; re-admission to hospital within 30 days, etc.?
• How do you plan to deal with the scars and adhesions resulting from the prior radiation? How will the scars and adhesions from the radiation affect the outcome of the robotic surgery?
• Will the possibility of internal hemorrhoids have any impact on the surgery?
• Will any of my co-morbidities have an adverse effect on surgery outcome?
• Will it be necessary to insert ureteral stents during surgery in order to prevent damage to the ureters ?
• Will the prior radiation likely lead to greater blood loss during surgery and a prolonged LAR surgery?
• For my resection, how far down in the rectum will the lower cut likely be made? How high up in the rectum will the upper cut be made?
• For my tumor, will the resection likely involve removing the entire recto-sigmoid junction as well?
• How large an incision will be necessary in order to remove the entire resected specimen?
• What is the likelihood that this large incision will develop into an "incisional hernia"?
• How will you prevent cancerous particles from the resected specimen from falling into the pelvic space while the specimen is being removed from the body?
• Will there be any clips or metallic items remaining in the body after the surgery is complete?
• How close to the Anal Verge (AV) will the anastomosis junction likely be formed?
• What measures will be taken to insure that the LAR is done as a TME and as a "Sphincter Sparing Procedure"?
• At what level will the inferior mesenteric artery likely be ligated -- high ligation or low ligation? What are the implications of this?
• What method or equipment will be used to create the anastomosis - intra-corporeal stapling? extra-corporeal stapling? manual suturing?
• Will the tools that are used for creating the anastomosis cause possible bruising or damage to the nearby sphincter muscles or pelvic floor muscles?
• How and when will you be testing for possible anastomosis leakage?
• At some point during the surgery will you be able to obtain images or visual impressions of the two common iliac lymph nodes (CILNs) that were initially identified as being cancerous? Will you be able to use fluorescent imaging or some other method to assess the current status and viability of these nodes?
• What type of ileostomy is planned: a loop ileostomy? an end ileostomy?
• How will you decide where to position the ileostomy incision? How will the chosen position impact the use of seatbelts in cars, buses, or airplanes while I still have a stoma bag in place?
• After the ileostomy is in place and a stoma bag in use, what kind of diet restrictions will be required, and for how long? When can normal meals resume?
• Does the hospital have a certified WOC (Wound & Ostomy Care) nurse who can train me on how to care for and change my stoma bags?
• How can I avoid getting a parastomal hernia?
• After the surgery is complete, how long will it take for the anaesthesia to wear off?
• After surgery, when will I be able to move from the recovery room to the main ward?
• What arrangements will there be for managing post-surgery pain? Pain pump? epidural patch? pain pills? other methods?
• How soon after surgery will all of the different catheters, drain tubes, IV drips, etc., be removed?
• Will I be able to have visitors when I'm on the ward?
• How soon after surgery can I be discharged from the hospital and be able to go home?
• How long will it likely take for the anastomosis junction to completely heal? What physical activity restrictions are required until healing is judged complete?
• How do you determine when it is time to reverse (take down) the ileostomy?
• After ileostomy reversal surgery, what can be expected in terms of bowel function? What are the most likely kinds of difficulties experienced by LAR patients after ileostomy reversal? How long after ileostomy reversal will it likely take for bowel function to return to normal?
• What kinds of referrals or technical help can be obtained to facilitate a quick return to normal bowel function?
• When the resected tumor is sent off to the pathologist, what kinds of optional genetic/genomic tests will be requested -- in addition to the standard path report for CRC specimens - i.e., will the resected specimen be sent out for genomic testing for mutations and for micro-satellite instability (MSI) status?
• How soon after surgery will I receive a copy of the pathologist's report on the resected tumor?
• Will I be able to receive a copy of the LAR surgery report and will it specify exactly what procedures were actually performed and how they were performed, e.g., CPT® Code 44208 for a surgery that is performed as a laparoscopic low anterior resection with a low pelvic anastomosis and a diverting ileostomy.
• How soon after surgery will a colonoscopy be done?
• How soon after surgery will a CT scan or other type of scan be done?
  

QUESTION: Will your meeting with the surgeon be a face-to-face meeting, or will it be a tele-medicine Zoom/Skype sort of interview?

NOTE: Before your appointment with the surgeon, you could read the LAR article below from the MSKCC web site to help you prioritize your questions:

https://www.mskcc.org/cancer-care/patient-education/about-your-low-anterior-resection-surgery

Also, you should remember to bring a copy of your complete Medical History, and your Current List of Medications, in case the surgeon needs further details.

[rp1954]

Quick update not that it matters a great deal, but just so future posters might learn from my experience. I was quite worried about the side effects of FOLFIRINOX, but I've finished the my first infusion and am scheduled for my second round tomorrow AM but my side effects from the first round were relatively mild and certainly far less than I feared. Primarily I had fatigue, mild nausea, mild bouts of controllable diarrhea, and very mild neuropathy in my hands and feet and all the symptoms got better after the first 5 or 6 days.

mmmm, cyclical chemo experience can change +/- with each round, the effects of oxi- are cumulative.

I'm for sure jumping the proverbial gun here slightly, but as of now I believe the plan from my team of doctors would be for me to undergo TME surgery in May. I'm thinking about asking to delay the surgery until the end of August, what do people here think about that request?

The real "gun" here is your metastatic distant lymph node(s). Until ca 2010 they were considered inoperable, incurable and fatal, where even now you're skating on thin ice to be in the curable envelope. You've missed presenting information here (the extra blood tests and/or tissue path) as to biology hints as to what chemo and surgery might be curative.

Obviously, I will listen to whatever my doctors have to say, and a lot will depend on what the post chemo scans show, but my reasoning is twofold. First, we (my wife and I) spend several weeks at our vacation home on a lake in Maine where I spend much of my time on the lake in my boat towing kids around on boards, skis, and tubes. I'd hate to be doing that whilst sporting an ostomy. Maybe it's not as bad as I'm imagining, but it just seems a bit off putting to me.

As a theoretical exercise, LN removal first with a top notch surgical team, with good, uncomplicated recovery and continuous chemo first might give you your good summer while trying to be curative. Then doing the TME on that already irradiated, chemo'd, closely monitored(!) rectal tissue later might be plausible. But that needs an agreeable, capable surgical team, and a thorough, seamless chemical and monitoring plan actually implemented. Chemo vacations before definitive, curative treatment(s) of the LN are likely to make things worse and/or inoperable.

Second, I'm under the assumption that rectal cancer is very slow growing so a 2.5 month delay would have minimal risk. Like I said I will most definitely discuss this with my surgeon when I meet with him next, but just curious to get opinions and thoughts from people here.

"slow growing" is a very dangerous assumption at this time, especially with RT and after chemo started. There are actually two properties that can be quite independent, cancer tissue growth rate and metastasis (spread). You already are wrestling with the more dangerous one, metastasis with the distant lymph nodes. Small or microscopic metastatic lymph nodes can inflate very fast, especially once provoked or tickled by inflammation (e.g. RT, chemo, "std" poorly inflammation managed surgery). My wife's metastatic LN would inflate ca 100 fold in 1-4 weeks (1-5 mm --> 22+mm) and her overall CEA rate of doubling was ~5 weeks, without enough chemo and chemistry to stop growth. With sort of oligio LN mets, her metastatic spread appeared easier to stop on continuous chemo (oral chemo TID, "24 x365") at lower doses than required to stop tissue growth, or for actual shrinkage. However, each inflated LN makes treating the downstream (micro)mets harder.

My closest, personal experience was colon cancer support where the untreated, obstructed sigmoid had to come out, with just a reconnection (no bag).
Technically speaking in a de novo design sense, you might question which surgery should be first, the lymph nodes or the treated rectal cancer with chemo and radiation, but that is a pretty unconventional sequence as far as I'm aware - they usually want to observe the LNs (non)spread and growth first. Sometimes other mets are surgically removed before or without the treated primary cancer (site) being removed.

We addressed LN spread with continuous extra chemistries and chemo.
We also could better observe markers in real time with better sensitivity on continuous immmunochemo than standard cyclical chemo.