Starting point

Please feel free to read, share your thoughts, your stories and connect with others!
IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Thu May 13, 2021 12:48 pm

Dammit, you are so right Rob. It IS FOLFIRINOX and not FOLFOXIRI. And it is much more intensive. Yikes! I guess I wanted to be as aggressive as the cancer. This may be that.

I have the port put in, 1/2 hour later im getting chemo. Right now that I am hooked-up getting drips of oxaliplatin and Leucovrin i have a better idea of what i'm going thought

  • Session 1 (Today) Folfox
  • Session 2 (2weeks from now) Folfirinox for 7 seesions.

Got pre medication:
Leucovorin: 800mg
Oxaliplatin: 170mg
Adrucil (push): 800mg
5-FU: 2400mg

I'll update the signature asap
Last edited by IsmailMehdi on Mon May 17, 2021 10:31 am, edited 1 time in total.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Thu May 13, 2021 1:04 pm

catstaff wrote:According to famed medical text Wikipedia, it's the same drugs but FOLFIRINOX is harsher (it is used mainly for pancreatic cancer) and FOLFOXIRI is usually administered with bevacizumab.

Added later: and I happened upon this just now
https://ascopost.com/news/april-2021/ad ... al-cancer/



The change in plans was literally this week after consulting with MGH. I guess that's the new "treatment". Anyone feel like a guinea-pig ?I understand, especially for SRCC there's no proven path. that's why i was frustrated with the oncologist pushing back on ctDNA. I think we are in agreement now, it's my life, i am not altering the treatment. i just need more tools.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Thu May 13, 2021 5:53 pm

Day 1 is FOLFOX only, FOLFIRINOX is next as of session 2.
ok Day 1 is in the books, here's a summary:
15 minutes meeting with the Chemo Teach nurse. Was supposed to be 45 min but since the port was going in at 9, we had to cut it short. Fortunately, thanks to information from this board (Green Tea! :D )I had a bunch of pointed questions that surprised her and made the 15 minutes very effective. Namely

  • We will manage the oaxaliplatin in case of severe neuropathy. I work on a computer, not being able to do that would be really bad
  • Got Zofrane in the premed and also prescribed for later (days 3,4)
  • I will get EMLA cream prescribed for the next session
  • Tylenol over Advil for the first week due to the port healing
  • I've been taking Vitamin D3 and Melatonin, this is ok and no concern wrt conflict with chemo.
  • Picked-up imodium, would go to lomotil once the second phase starts.
  • We can go to Emend if nausea gets worse.

After the teach session, we rushed to intervention to get the port put in. another screw-up on my part here, i had coffee and a cookie. This meant very little sedation. it was uncomfortable but manageable.The most uncomfortable thing was the novocain injections. The port went in after 25 minutes, we left it attached so I can go right away get chemo.

Chemo was relaxing, i got the port hooked up to receive Leucovorin and Oxaliplatin at the same time for 2 hours. Then I got a 5-FU 'push", then I got the little pump hooked up for 46 hours. i was there for 4 hours, worked some, dozed some.

In terms of impact, i am sleepy, mostly because I didn't sleep last night. I was hungry getting home and devoured dinner. I did get the shards in your throat drinking almost room temperature water. Other than that, day one was manageable.

The port is sore and uncomfortable, once it heals I am sure it won't be a problem.

That's my day, sorry it sounds like a stream of consciousness. I'll clean it up at some point.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

catstaff
Posts: 86
Joined: Wed Mar 03, 2021 11:37 am

Re: Starting point

Postby catstaff » Fri May 14, 2021 7:08 am

My husband (and I) also work on the computer. Before FOLFOX he was an excellent touch typist. Now he uses an awkward hunt-and-peck motion since, he says, he can no longer feel the keys well enough for touch typing. If it works for you it will be a small price to pay, however.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

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

Re: Starting point

Postby Green Tea » Fri May 14, 2021 9:21 am

Thank you for posting your "stream of consciousness" to describe your first FOLFOX session. This was a very good overview for those of us who have never experienced FOLFOX.

For your next cycle I suppose that the routine will be much the same, except that it will need to involve an additional IV infusion segment to take care of the Irinotecan(Camptosar) infusion, so I assume that your total time under infusion will be a bit longer then.

I'm not sure exactly how the new regimen will differ from your current FOLFOX cycle, but I have indicated below what it tentatively looks like to me. (At the beginning of your next infusion session you might want to ask the nurse for clarification on what exactly will be done, in which order, and at which dosage, and for what duration. Also, you might want to clarify what kind of IV fluid is at the base of each different infusion, since some of the infusions require glucose-based fluids, while others use saline fluids.)

Here is a speculative layout of what the infusion sequence might look like for you next time (subject to necessary modifications, of course)
  • Flush the port/IV lines (dextrose 5% (D5W) solution?)
  • Administer IV med(s) for nausea/vomiting, etc.
  • Flush the port/IV lines again, if necessary.
  • Irinotecan(Camptosar) infusion for x hours (using a bottle of dextrose 5% (D5W) solution?)
  • Leucovorin(Folinic acid) and Oxaliplatin(Eloxatin) combined infusions for 2 hours (each using a bottle of dextrose 5% (D5W) solution?)
  • Flush the port/IV lines again, if necessary.
  • 5FU (5 Fluoro-Uracil) IV bolus ("push") for x minutes (using normal saline solution (NSS)?)
  • Fill the small pump with 5FU in normal saline solution (NSS) and hook it up for 46 hours. (?? Is pump also filled with Leucovorin, too, or is it only 5FU??)
I think it would help to have the schedule above modified and finalized by the nurse so that you know what to expect in sequence during your infusion sessions. You can also use the finalized schedule to double-check whether things are being done in time. Sometimes the nurses lose track of the time and forget to check whether the current bottle is empty and should be replaced by the next infusion bottle. Sometimes they set the flow rate wrong and the infusion finishes at the wrong time. (This was my experience when I was on XELOX and oxaliplatin infusions.)

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Fri May 14, 2021 9:56 am

Green Tea wrote:Thank you for posting your "stream of consciousness" to describe your first FOLFOX session. This was a very good overview for those of us who have never experienced FOLFOX.

For your next cycle I suppose that the routine will be much the same, except that it will need to involve an additional IV infusion segment to take care of the Irinotecan(Camptosar) infusion, so I assume that your total time under infusion will be a bit longer then.

I'm not sure exactly how the new regimen will differ from your current FOLFOX cycle, but I have indicated below what it tentatively looks like to me. (At the beginning of your next infusion session you might want to ask the nurse for clarification on what exactly will be done, in which order, and at which dosage, and for what duration. Also, you might want to clarify what kind of IV fluid is at the base of each different infusion, since some of the infusions require glucose-based fluids, while others use saline fluids.)

Here is a speculative layout of what the infusion sequence might look like for you next time (subject to necessary modifications, of course)
  • Flush the port/IV lines
  • Administer IV med(s) for nausea/vomiting, etc.
  • Flush the port/IV lines again, if necessary.
  • Irinotecan(Camptosar) infusion for x hours (using a bottle of dextrose 5% (D5W) solution?)
  • Leucovorin(Folinic acid) and Oxaliplatin(Eloxatin) combined infusions for 2 hours (each using a bottle of dextrose 5% (D5W) solution?)
  • Flush the port/IV lines again, if necessary.
  • 5FU (5 Fluoro-Uracil) IV bolus ("push") for x minutes (using normal saline solution (NSS)?)
  • Fill the small pump with 5FU in normal saline solution (NSS) and hook it up for 46 hours. (?? Is pump also filled with Leucovorin, too, or is it only 5FU??)
I think it would help to have the schedule above modified and finalized by the nurse so that you know what to expect in sequence during your infusion sessions. You can also use the finalized schedule to double-check whether things are being done in time. Sometimes the nurses lose track of the time and forget to check whether the current bottle is empty and should be replaced by the next infusion bottle. Sometimes they set the flow rate wrong and the infusion finishes at the wrong time. (This was my experience when I was on XELOX and oxaliplatin infusions.)


Will do Green Tea, i will note the change from the first session. From what I was told, there will be an additional 1 1/2 hr of Irinotecan after Leucovorin and Oxaliplatin.
Additional info, i will go through 8 sessions, not 12.

For this session the progression was as follows:

  • Flush the port/IV lines (dextrose 5% (D5W) solution?)
  • Administer IV med(s) for nausea/vomiting, This was zofran at minimum, there might have been something else.
  • Flush the port/IV lines again.
  • Leucovorin(Folinic acid) and Oxaliplatin(Eloxatin) combined infusions for 2 hours
  • Flush the port/IV lines again, if necessary.
  • 5FU (5 Fluoro-Uracil) IV bolus ("push") for 10 minutes
  • Fill the small pump with 5FU in normal saline solution and hook it up for 46 hours. Just 5FU.

Yesterday, outside of the little tugging on the port, i felt fine. I think knowing that I am now trying to fight back felt good. The only unusual thing was drinking water, it was not cold, may be a little colder than room temperature. The way I described it to my wife was like drinking hard breadcrumbs. Like tiny little shards. must be my friend oxaliplatin.
I woke up in the middle of the night with some short shooting heartburn that dissipated quickly. Otherwise, uneventful night.
I am feeling ok today, had coffee and some light breakfast. Bracing for day 3 and 4.

I additional news, I had reported that my surgeon thought there was margin between the tumor and the prostate, but explained to me that I was at risk for pelvic exenteration. So the MRI was sent to 2 different centers (MGH and Dana Farber), here is the summary verbatim:
  • Mesorectal nodes/tumor deposits are: Negative
  • There are not suspicious extramesorectal nodes.
  • Based on MR images provided, there is no direct invasion of the adjacent prostate.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

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

Re: Starting point

Postby boxhill » Fri May 14, 2021 11:27 am

Good news re prostate! You should probably plan on drinking warm or hot, not room temp, liquids for the first few days of every cycle with oxy. Unless, I suppose, you are icing. I don't know where you are located, but I live in Maine and started folfox on May 4th in 2018. I am normally a person who prefers cold temps--I like the house at 60-62F during the heating season--but I had to not only turn the heat on after we would normally turn it off, but wear warm socks and gloves in the house until July or August.

Good luck! Be aggressive with your anti-nausea meds if you do get nauseous. Not everyone does.
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

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

Re: Starting point

Postby Green Tea » Fri May 14, 2021 1:41 pm

I saw that you mentioned Lomotil (a prescription drug for diarrhea) in one of your recent posts. This reminded me of something I had read earlier that said that Irinotecan can trigger an especially difficult kind of diarrhea that could require immediate attention of a doctor.

I am including some resources below that describe some of the approaches that can be used in treating or managing chemotherapy-induced diarrhea. You can have a look at these so that you can be prepared in advance in case you have a serious flare-up of diarrhea/dehydration while on Irinotecan. Since your infusions are on Thursdays, you need to have a way to contact your doctor on the week-end if a serious problem develops in the days just after your infusion.

In the last document below, it explains diarrhea on pages 13-14, and it defines the 5 grades of adverse reaction on page 6 of that document. You would want to manage your various side effects so that they never exceed Grade 2. If a side effect ever escalates to the Grade 3 level, then they have to suspend chemo until the problem is resolved. You wouldn't want this to happen because what you want is to have eight good cycles of strong chemo without any delay or interruption.

Treating Diarrhea - Video Transcript
https://streaming.mdanderson.org/transcript/poe-treating-diarrhea-bisanz.htm

Diarrhea Management
https://www.mdanderson.org/patient-education/Bowel-Management/Diarrhea_docx_pe.pdf

Dehydration
https://www.mdanderson.org/patients-family/diagnosis-treatment/emotional-physical-effects/dehydration.html

Lomotil vs. Imodium
https://www.rxlist.com/lomotil_vs_imodium/drugs-condition.htm

Managing side effects of colorectal cancer treatment
https://fightcolorectalcancer.org/wp-content/uploads/2020/02/SideEffects_MiniMag_2019_WEBREADY.pdf

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Fri May 14, 2021 2:55 pm

boxhill wrote:Good news re prostate! You should probably plan on drinking warm or hot, not room temp, liquids for the first few days of every cycle with oxy. Unless, I suppose, you are icing. I don't know where you are located, but I live in Maine and started folfox on May 4th in 2018. I am normally a person who prefers cold temps--I like the house at 60-62F during the heating season--but I had to not only turn the heat on after we would normally turn it off, but wear warm socks and gloves in the house until July or August.

Good luck! Be aggressive with your anti-nausea meds if you do get nauseous. Not everyone does.


Thanks boxhill, i'm a fellow New Englander, located in MA. It seems that I will have to spend time out in the sun, we probably have a really warm summer which will help this time I guess.
I will absolutely be aggressive with the nausea.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

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

Re: Starting point

Postby Green Tea » Sat May 15, 2021 3:05 am

I have another few questions that I forgot to ask before, if you don't mind, since I have never had any experience with a pump.

After the 46 hours on the pump do you have to go back to the infusion center for the disconnect, or can you safely do the disconnect yourself from home?

If you have to go back to the infusion center after 46 hours, do they do any tests while you are there (e.g., blood tests, etc.)? Do they at least check your temperature, pulse, and resting heart rate while you are there, or do they just disconnect the pump and send you on your way?

Is there anyone there who can answer your questions, or give you a prescription if you need help with managing your side effects?

How much time does it take you to go to the infusion center, do the disconnect and then return back home? Can you manage to do anything else that same day (e.g., go back to work for a few hours)?

Rock_Robster
Posts: 562
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Starting point

Postby Rock_Robster » Sat May 15, 2021 6:44 am

Green Tea wrote:I have another few questions that I forgot to ask before, if you don't mind, since I have never had any experience with a pump.

After the 46 hours on the pump do you have to go back to the infusion center for the disconnect, or can you safely do the disconnect yourself from home?

If you have to go back to the infusion center after 46 hours, do they do any tests while you are there (e.g., blood tests, etc.)? Do they at least check your temperature, pulse, and resting heart rate while you are there, or do they just disconnect the pump and send you on your way?

Is there anyone there who can answer your questions, or give you a prescription if you need help with managing your side effects?

How much time does it take you to go to the infusion center, do the disconnect and then return back home? Can you manage to do anything else that same day (e.g., go back to work for a few hours)?

I had to go in for disconnect; but I have heard of people who get approval to do it themselves at home. Went I went in they took a basic round of clinical observations (BP, pulse, sats, etc), disconnected the pump, and flushed the line. Some people also got an extra bag of fluids if they needed it for hydration. You could also ask the nurses any questions you had. Whole process took about 15 mins.
39M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Mar ‘21

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Sat May 15, 2021 6:52 pm

Green Tea wrote:I have another few questions that I forgot to ask before, if you don't mind, since I have never had any experience with a pump.

After the 46 hours on the pump do you have to go back to the infusion center for the disconnect, or can you safely do the disconnect yourself from home?

If you have to go back to the infusion center after 46 hours, do they do any tests while you are there (e.g., blood tests, etc.)? Do they at least check your temperature, pulse, and resting heart rate while you are there, or do they just disconnect the pump and send you on your way?

Is there anyone there who can answer your questions, or give you a prescription if you need help with managing your side effects?

How much time does it take you to go to the infusion center, do the disconnect and then return back home? Can you manage to do anything else that same day (e.g., go back to work for a few hours)?



So, we went for the disconnect today, hospital is not too far from home, but I don’t think we’ll go for a disconnect again.
My wife signed-up to do the next one and the nurse walked us through the process.
There was not real “check-up” mostly, how are you feeling, did you have any trouble etc..
The process is fairly simple:
  • Use gloves! No contact with chemo.
  • Shutoff the pump, making sure it’s showing empty
  • Unhook it from the line, swab with alcohol pad
  • Use saline syringe (she had 2) to flush the line, empty the saline into the port.
  • Second syringe do a blood pull to make sure no blockage then empty into the port. She did say that was not required.
  • Remove the gauze (probably had it because i just had the port put in Thursday)
  • Remove the needle and collapse it into the clip it comes with
  • Alcohol pad for the area, then bandaid on the spot

For the next infusion, we’ll go home with a hazmat bag, the syringes, gloves etc. I’ll then bring it all to them on the following visit. The process was all in all, 10 minutes. It took longer to get there and back.
As far as doing other things during the day, I guess its possible. In my case, i lost all energy as soon as we got home. I was not able to do much this afternoon. I am sure others may fare better.
I think the Thursday infusion will work well for me. Friday is a slow day and hopefully i can recover during the week-end. I am really hoping I’ll be in ok shape Monday.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

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

Re: Starting point

Postby Green Tea » Tue May 18, 2021 9:22 am

Thanks for the information on the pump. Now I understand the pump disconnect operation a little better.

I have a hypothesis/speculation about the pump and the infusion: If you were to do a bit of light exercise for about half an hour a day while the pump is on, wouldn't this increase the blood flow to the periphery and make it easier for the chemo to to flow into the peritoneum and kill off the micro-metastases there? It seems to me that a little exercise might dilate the blood vessels there and facilitate more intense delivery of chemo before all the chemo is excreted from the body. What do you think? I have never seen this possibility mentioned anywhere, but it might be worthwhile discussing it with the oncologist to see I there would be any problems in trying this approach.

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Tue May 18, 2021 9:54 am

Green Tea wrote:Thanks for the information on the pump. Now I understand the pump disconnect operation a little better.

I have a hypothesis/speculation about the pump and the infusion: If you were to do a bit of light exercise for about half an hour a day while the pump is on, wouldn't this increase the blood flow to the periphery and make it easier for the chemo to to flow into the peritoneum and kill off the micro-metastases there? It seems to me that a little exercise might dilate the blood vessels there and facilitate more intense delivery of chemo before all the chemo is excreted from the body. What do you think? I have never seen this possibility mentioned anywhere, but it might be worthwhile discussing it with the oncologist to see I there would be any problems in trying this approach.



Great point, certainly something to try. Any way to increase blood flow i assume would feed the cancer chemo, right ? Hot baths ? hyperthermia seems to have some correlation.
I did see some googling (so much googling!) https://pubmed.ncbi.nlm.nih.gov/11821798/
I'll definitely try exercising some on chemo day, the days after might be tough to do anything.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

Bpaint
Posts: 15
Joined: Sun Oct 11, 2020 8:54 pm

Re: Starting point

Postby Bpaint » Tue May 18, 2021 10:37 am

I always unhooked my husband's pump at home. Takes only a minute or two.

For what it's worth-- my husband thought acupuncture helped with the neuropathy in his hands and feet from the oxapalitan.
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection scheduled for 4/9/21


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 1 guest

cron