Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

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DarknessEmbraced
Posts: 3113
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Location: New Brunswick, Canada

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby DarknessEmbraced » Thu Mar 29, 2018 8:20 am

I'm so sorry both you and your daughter are going through cancer treatment!*hugs* I hope your daughter's chemo and surgeries go well. I also hope your radiation/chemo and surgeries go well!*hugs* Sending you both all the best!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Caat55 » Thu Mar 29, 2018 2:09 pm

From my signature you can see a lot of similarities, from my posts you would see more. I was where you are 6 months ago and it seems a million more. Newly married, active, exercising and a little bleeding which was attributed to ulcerative colitis and hemmorids. Wham!!!
I am going to be very blunt, take care of skin between cheecks and legs. My parts were fried. After being unable to sit for last month of radiation and afterwards I was given a prescription for BioFine. There is also none prescription Miaderm. Both say to use every day during radiation. Wish I had know. Three months old and my skin is still fragile, did yoga yesterday and perspiration irritated it badly.
Drink a ton, helps keep things moving through your body.
I just finished first round of mop up chemo, started last Thursday. Excepted for pins and needles in hands and feet and intolerance for even room temperature beverages I feel great. Did yoga, mowed lawn and hike with pup and husband 2 1/2 miles.
I made a decision not to give cancer space in my life and I am fighting that every day. You can do this.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

prs
Posts: 116
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby prs » Thu Mar 29, 2018 2:23 pm

SpringerSpanielMommy wrote:I am having neoadjuvant chemo/radiation for 30 sessions over 6 weeks, starting this Wednesday. I will be taking 1500mg of Xeloda twice a day only on the days I am having radiation. Then I will be having systemic chemo and will be having a port put in at the end of this first 6 weeks of treatment, and then about a week break before the start of the next type of chemo. The goal is to downstage me and if possible get me to a complete response. Both my chemo onc and radiation onc consider my treatment curative, and are very optimistic.

I am at one of the top cancer hospitals in the US and have a really talented team of doctors. It is scary because I have never been sick, nor taken medicine. I have always powered through headaches without even Tylenol or Ibuprofen because I wanted to protect my liver and kidneys. So, becoming a Pharmaceutical Queen is way outside my comfort zone, and reading the drug inserts, holy cow!!!!!!!!!!!!

I am a very strong Christian and I am confident that King Jesus is stronger and Lord over cancer, apparently this is the path that I am to walk. So, I am looking for friends, people who are walking or have walked this path to come alongside me and help share this chapter of my life.

Are you hoping for a complete clinical response to avoid surgery and save your sphincter? If so, and you haven't already read it, this thread will give you hope:

viewtopic.php?f=1&t=53498

As more data comes in to show that watch and wait outcomes are at least as good as surgery, then more studies are taking place to try and increase the rates of CCR. Currently watch and wait seems most appropriate for those patients who's quality of life stands to be most adversely affected by surgery.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Thu Mar 29, 2018 8:29 pm

Thank you NHMike regarding the mail order chemo drugs, I waited over a week for them to be "overnighted" as there was a "mixup" between my onc. office and the mail-order pharmacy. I am prepared to take your advice about getting the refill earlier than needed.

Aqx99: I appreciate what you are saying about the food, loss of taste and Miralax, I am currently taking stool softeners and want to make this as easy on my tissues as possible. Constipation, tears and fragile tissues have my full attention, owie!!!

NHMike: You are absolutely correct about my treatment and working towards a Pathological Complete Response. My treatment plan as of this moment is to complete the Xeloda/Radiation for 6 weeks and then I will be having a port placed for systemic chemo. The drugs they have told me that will be used are Leucovorin, Oxaliplatin, Fluorouracil, which will be given they said every 3 weeks for 24 weeks. I will be restaged and if the goal of complete response is reached then they are going to use a watch and wait approach. The doctors are confident that this is the best approach for me and say it will significantly reduce the needed surgery by doing this method. My surgeon is hoping to have a minimal approach and my chemo onc and radiation onc believe it is a real possibility.

Deb M: Yes, attitude and outlook is really important. I have always been a very optimistic person (glass half full) and as my daughter said to me recently "Someone may give you a cactus, but that does not mean you need to sit on it!" I love that, God is using everything in our lives to prepare us for things to come, and I am confident He loves us and does not cause us harm. The world is a fallen place and what has happened is simply the result of living our temporal lives.

DarknessEmbraced: It is insane that we are both on this cancer path together at opposite ends of our bodies, so. very. weird. It has brought us closer, as we are sharing the most challenging chapter of our physical lives together, and she is doing it with a toddler and elementary school child in the house. Our husbands are walking the paths together too, and her husband's father has been diagnosed with bladder cancer (December 2017) and is now undergoing treatment too. We appreciate your hugs and well wishes. I hope your path is leading to a complete cure too.

Caat55: I love that you are 6 months ahead of me and it seems like a million more. What a shock of a diagnosis for sure, and I love your activity, attitude and results. I am encouraged that there are so many people here who reach out and help us junior warriors. I will ask about the skin as they said not to use anything yet. I am concerned about being able to have sex, as my husband does not want to hurt me and frankly I don't want to be hurt either so, we have not done anything since this trauma started in our lives.

prs. I appreciate that link and will read it over, the goal is to avoid surgery and save my sphincter and if surgery is needed to have it be less invasive if possible.

This afternoon was my second radiation treatment and my third dose of Xeloda, I have tingling in my tailbone area (maybe in my mind, seems like it is too soon?) last night I woke up with my tongue glued to the roof of my mouth, it was SO DRY, holy cow. I have never had that happen before........I keep reminding myself that I am not alone in this, everyone I have run into at the radiation center is having breast radiation, it is so weird to be the only one in the waiting room stripped from the waist down, among everyone else stripped at the top, all of us wearing gowns.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Sun Apr 01, 2018 4:59 pm

Happy Easter Everyone! We spent the day with my daughter and her family, quite a nice time together. I was concerned that I may have had an obstruction as the doctor told me it was a possibility, with the location and size of my tumor. I have been taking 3 stool softeners a day since diagnosis and for the last 4 days taking Miralax too with nothing happening, except passing blood and pieces of tissue, which I hope is the tumor dying, until this afternoon, Yay!

In other news, I have 3 sores on my tongue which I guess is related to the Xeloda, and I started the baking soda rinse my doctor's sheet advises to do it that happens. Tomorrow I am back at the radiation treatments for 5 days, and I do not know if this is related to the radiation or the Xeloda, as it was not mentioned in any of the paperwork I have received, but I have a very sore spot at the opening of my vagina, which is quite red, so can you get sores there too? This is not something I have ever had before......
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Caat55 » Sun Apr 01, 2018 7:05 pm

SpringerSpanielMommy wrote:Happy Easter Everyone! We spent the day with my daughter and her family, quite a nice time together. I was concerned that I may have had an obstruction as the doctor told me it was a possibility, with the location and size of my tumor. I have been taking 3 stool softeners a day since diagnosis and for the last 4 days taking Miralax too with nothing happening, except passing blood and pieces of tissue, which I hope is the tumor dying, until this afternoon, Yay!

In other news, I have 3 sores on my tongue which I guess is related to the Xeloda, and I started the baking soda rinse my doctor's sheet advises to do it that happens. Tomorrow I am back at the radiation treatments for 5 days, and I do not know if this is related to the radiation or the Xeloda, as it was not mentioned in any of the paperwork I have received, but I have a very sore spot at the opening of my vagina, which is quite red, so can you get sores there too? This is not something I have ever had before......

Despite the radiation tattoos which led to believe it is focal, in my experiences every gets cooked and painful. I wore underwear inside out to avoid seams, ultimately switch to loose cotton boxers and skirts. Even now I can't tolerate pants for more than one day, next day back to a skirt. Wearing leg warmers just like in late 70s and 80s.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1685
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Sun Apr 01, 2018 7:48 pm

SpringerSpanielMommy wrote:Happy Easter Everyone! We spent the day with my daughter and her family, quite a nice time together. I was concerned that I may have had an obstruction as the doctor told me it was a possibility, with the location and size of my tumor. I have been taking 3 stool softeners a day since diagnosis and for the last 4 days taking Miralax too with nothing happening, except passing blood and pieces of tissue, which I hope is the tumor dying, until this afternoon, Yay!

In other news, I have 3 sores on my tongue which I guess is related to the Xeloda, and I started the baking soda rinse my doctor's sheet advises to do it that happens. Tomorrow I am back at the radiation treatments for 5 days, and I do not know if this is related to the radiation or the Xeloda, as it was not mentioned in any of the paperwork I have received, but I have a very sore spot at the opening of my vagina, which is quite red, so can you get sores there too? This is not something I have ever had before......


One of the problems with a large tumor is that it makes it feel like you need to go to the bathroom when there isn't anything there to come out. And so pushing puts pressure on the tumor to be pushed out but it's attached to you so there's some blood coming out. I didn't have the tumor sloughing off until about two or three weeks into treatment and they tended to be thin pieces of translucent stuff with a little blood, probably the attachment point.

I used Miralax and Magnesium CItrate and sometimes nothing really came out because the stuff was higher up. So things can feel difficult because the signals for your body to go are messed up.

My understanding is that there are more things in women in the area so that they often have a tougher time with the radiation compared to guys. It's no picnic for guys either but there are more things down there that women have. Also, I think that the radiation and Xeloda have opposite effects (one results in more constipation and the other in diarrhea). I had far more problems with constipation and always worried that there would be a blockage but it was never blocked - it just felt like it. You can ask your doctor and they'll do a DRE (Digital Rectal Exam) to see if there's enough space for stuff to get out but I don't know that there's anything that they can do. Once the chemo + radiation really start shrinking the tumor, this stuff should feel better. I was a kind of panicky about worrying that it would keep growing until I could perceive that it was shrinking.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

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O Stoma Mia
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Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby O Stoma Mia » Tue Apr 03, 2018 8:42 pm

SpringerSpanielMommy wrote:...
I MUST know and understand what their procedure is before submitting to treatment and they told me:

1. There is a physicist in the property at all times.
2. There are extensive tests done daily before the machines can be used for therapy on patients.
3. There are test X-rays done before treatment to ensure while you are lined up with the laser marks matching up exactly on the marks on your body from the simulation in the exact same position (on my stomach, with a big hole in table for abdomen to fall through to move as much small intestine as possible out of the way, and a very full bladder pushing and protecting small bowel) the radiation oncologist ensures all looks perfect and then the very exact designed treatment is administered.
4. My radiation oncologist day to work there is Tuesdays.
5. I am being administered 45 grays in 25 fractions.


I think it would help if you could find out all you can about the machine and the procedure that is used in your radiation treatment. Here is some information on the Varian Clinac Linear Accelerator, in case this is the machine you are using. It's good that you are becoming well-informed about the details of your chemo/rad procedure.
.
O Stoma Mia wrote:Collateral damage can be minimized by using radiation machines that target specific locations and that modulate the radiation intensity according to the regions that actually need some radiation. In this case, the level of collateral damage depends on the skill of the radiologist who is responsible for programming the machine to target certain areas and avoid other areas.

There are several companies that make linear accelerators (radiation machines) that do targeted radiation. When you meet with your oncologist you can ask which machine will be used in your case and what type of capability it has to target the radiation so as to avoid radiating critical adjacent organs or structures.

For rectal cancer, I think the big problem with collateral damage would be with radiation to the sphincter muscles. If intense radiation is allowed to creep into this area, then I think there will be problems in the future in getting the sphincter muscles to work properly. (This is just my personal opinion)

.

SpringerSpanielMommy
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Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Sun Apr 29, 2018 9:09 am

Monday and Tuesday this coming week are the last treatments before I start the boosts on Wednesday. I am having 3 High Risk boosts for the lymph nodes which were involved as well as the iliac sentry nodes, and then 2 boosts for the rectum area of the tumor. I will be finished with all of the radiation on May 8th. My nether regions are burnt to a weepy crisp already, and that is basically the worst of the side effects I have had, I have handled the Xeloda with essentially no side effects.

I see the chemo onc this coming Friday and I will be scheduled to have a port placed in my chest. I am nervous about this part as the systemic chemo is no picnic based on what I have read on this forum from those who have been through it. NHMike I really appreciate your candor with what has been your experience, it helps to know what to expect overall.

I have been really diligent using the Utterly Smooth cream twice a day for my hands and feet and am so grateful for that advice. I have been able to balance working and having my clients not know what is going on with my diagnosis or treatment as it would be destructive to my business. Any hints on what to do to power through the systemic chemo as strongly as possible will be appreciated. I will be taking oxaliplatin, 5 fu and leucovorin for 6 months.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

NHMike
Posts: 1685
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Sun Apr 29, 2018 11:26 am

SpringerSpanielMommy wrote:I have been really diligent using the Utterly Smooth cream twice a day for my hands and feet and am so grateful for that advice. I have been able to balance working and having my clients not know what is going on with my diagnosis or treatment as it would be destructive to my business. Any hints on what to do to power through the systemic chemo as strongly as possible will be appreciated. I will be taking oxaliplatin, 5 fu and leucovorin for 6 months.


My pattern was to work from home after the infusions. There was one time when I went into the office after the infusion and I did fine. The infusion for the current cycle made me somewhat tired and I might have had a cold but I was still able to put in a lot of hours to meet an impending deadline. I'd say that it's really important that your oncologist know if you're having issues as they can change dose and timing to provide some relief for side-effects that cause big problems.

If you live in a warmer area, then that's great. If not, then six months puts you in November and you can run into more problems with cold sensitivity. So having warm clothing, good gloves, etc. can help. My oncologist recommended getting a car with a heated steering wheel but I had just bought a car before and it didn't have the option. That would have been really helpful this past winter.

I have not done the 5FU thing - I have only done Xeloda. You will have to wear the pump for two days and that may impact meeting with other people. Others here may say if it's small enough so that it can be hidden and if it's really quiet or makes noises while it is working. I am guessing that you won't have an illeostomy. The illeostomy can make it easier as the chemo drugs can cause diarrhea. If you have a bag, then it's not a big deal outside of having to empty it. Those on FOLFOX without an illeostomy can chime in on any challenges there.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
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Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby susie0915 » Sun Apr 29, 2018 1:24 pm

I did my xelox without a bag. My ileostomy was reversed 5 weeks after my resection. I had a bowel blockage 4 weeks after surgery due to scar tissue and when it didn't resolve on it's own I had to have surgery. My surgeon chose to reverse the ileo then so as not to undergo another abdominal surgery later. It would've probably been easier with the bag as I did have diarrhea. It did become a nuisance but I made it through with immodium, lomotil and cholestyramine prescribed by my oncologist. I was originally going to keep the ileostomy until after I finished chemo. Good luck in your upcoming appointments.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Caat55 » Sun Apr 29, 2018 2:44 pm

Part of the chemo is some pretty intense meds to help with side effects, nausea. They make Friday and Saturday okay but by Sunday I am beat. The cold intolerance is mentioned by all and it is hard to overstate how strange and uncomfortable it really can be. I am tough, thought it would be a nuisance but it is more than that. I wear oven mits to cut veggies, but end of second week can use thinner garden gloves but even 18 days out it is uncomfortable to slice strawberries, imagine holding an ice cube in between your fingers, the tingling and burning, that’s what those yummy berries felt like.
I choose you knows about my treatment, most people would never guess as I have gone about my days as I always have, work, volunteering, social engagements, gardening and hiking. I find that my energy drops and I have to plan a bit, conserve my energy is I want to make it through a night event.
I love potatoes, a comfort food, and they help with the bowel stuff. I haven’t taken any meds for it as yet. I did try the nausea meds but maybe not soon enough as they didn’t really help.
My burned bum has been helped by CBD salve, I don’t know if its the high quality oils, shea butter, essential oils or the cannibaboids, but it has relieves the pain and finally healing .
Best of luck.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

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O Stoma Mia
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Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby O Stoma Mia » Sun Apr 29, 2018 3:03 pm

SpringerSpanielMommy wrote:... Any hints on what to do to power through the systemic chemo as strongly as possible will be appreciated. I will be taking oxaliplatin, 5 fu and leucovorin for 6 months.

The chemo regimen that you are referring to is called FOLFOX. If you are looking for hints on how to power through 6 months of FOLFOX, then I would suggest that you use the term FOLFOX in all of your future posts, post titles, and in your signature. This is so that you can maximize the number of replies you get from people who have actually had experience with this particular regimen.

FOLFOX is not the same as XELOX (CAPEOX)

There are some FOLFOX Treatment Journals on this forum that you could scan for hints. (See the links below)

O Stoma Mia wrote: Here is some information on FOLFOX.

  • FOL-F-OX (infusion)

    FOL - Folinic acid (Leucovorin) side effects
    http://www.drugs.com/sfx/leucovorin-side-effects.html
    http://chemocare.com/chemotherapy/drug- ... vorin.aspx

    F – Fluorouracil (5-FU) side effects
    http://www.drugs.com/sfx/fluorouracil-side-effects.html
    http://chemocare.com/chemotherapy/drug- ... racil.aspx

    OX - Oxaliplatin side effects
    http://www.drugs.com/sfx/oxaliplatin-side-effects.html
    http://chemocare.com/chemotherapy/drug- ... latin.aspx
    .
  • Side effects log -
    _MON____TUE_____WED____THU____FRI_____SAT____SUN__
    .AM PM...AM PM....AM PM...AM PM...AM PM....AM PM...AM PM.
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Diarrhea
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Vomiting
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Nausea
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Mouth Sores
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Hand-and-foot syndrome (HFS)
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Fever or infection
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Stomach area pain
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Pain (other)
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Fatigue
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Constipation
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Loss of appetite
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Dehydration
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Skin problems
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Hair loss
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Dizziness
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Headache
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Insomnia
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Taste problems
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| etc..
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
    |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
    .
  • FOLFOX Treatment Journals - Several members have posted journals of their FOLFOX experience. Here are some links:

    FOLFOX Treatment Diary
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55011

    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59205&p=468320#p468320
    .
  • Medications for each side effect - For each of the major expected side effects, you should have a plan for treating the side effect at three possible levels of intensity, for example:

    1. Mild level - Home remedies or over-the-counter preparations
    2. Moderate level - Mild prescription medications or over-the-counter preparations
    3. Severe level - Strong prescription medications

    It would help to have the options identified in advance at these three levels for each major type of side effect (and approved by your doctor), although it may not be necessary to purchase everthing in advance. Some products may be hard to find, so it may be wise to do some research in advance to determine where you are going to obtain the products in case you ever need them.

    It is important to be pro-active and start treating the problems early, as soon as they start to appear. There is a reason for this: Under chemo/radiation therapy the immune system becomes somewhat compromised and a bit dysfunctional. It takes a bit longer for medications and treatments to take effect, so you need to start the treatments early, at the first sign of a problem. If you decide to wait until the problem becomes almost unbearable, then this might be a bit too late for your immune system to step in, catch up, and quickly solve the problem. In a way, there is no point in taking a 'macho' approach by trying to be a hero by toughing it out. Now is the time when your body needs tender loving care by giving it some form of treatment whenever something starts going wrong.
    .
  • Consent form - If you have not done so already, you will need to read and sign the hospital's "Chemotherapy Informed Consent" form. This is a form that describes the major risks and benefits of the treament procedure. I would recommend that you read your form thoroughly before you sign it, and be sure that any questions you might have are answered before you sign. Also, ask for a photocopy of the form that you have just signed. A sample template of such a form can be downloaded from the link below. Click on the link, and use the SaveAs option to save the file to the Windows Desktop. Then after the download is complete, open the file and look at its contents, in particular the section on "Risks/Side Effects of Proposed Treatment". This is where the main side effects of your treatment (FOLFOX) will be listed on the form that they give you to sign. Chemotherapy Consent Use and Discussion Guide
    .
  • Book - I would recommend reading the following book, which gives a general introduction to chemotherapy without focusing on any particular drug. The emphasis is on how to deal with the main side effects that are common to most all chemotherapy regimens, i.e., nausea, diarrhea, fatigue, neuropathy, etc. It is a good guide for someone who has had no prior experience with chemotherapy
    "Chemotherapy Survivor Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)
    .
  • Your weight - Oxaliplatin dose is determined by patient body surface area (BSA) measured in meters squared, the formula for which requires your height and weight as input. Body Surface Area (BSA) Calculator. Be sure that they get your exact current weight, otherwise they may put the wrong dose of oxaliplatin in the syringe (i.e., don't get weighed with your pockets full of keys, cell-phone, wallet, etc, and be sure to take off your shoes and any heavy clothing). If you weigh in at a heavy weight, the dose they calculate for you may be too high, and it may amount to an overdose. A normal dose of Oxaliplatin (85mg/m2) is bad enough, and you certainly don't want to get an overdose. Also, make sure they re-weigh you properly for each new cycle of Oxaliplatin, since you may be losing weight from one week to the next, so your dose should be decreased each time according to amount of weight lost.

  • Oxaliplatin side effects - Treating peripheral neuropathy by naturopathy -

    Re: Oxyplatin advice (post)
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50311&p=385241#p385241
    Prevention and Management of Chemotherapy-Induced-Peripheral Neuropathy in Survivors of Adult Cancers: ASCO Clinical Practice Guideline
    http://jco.ascopubs.org/content/32/18/1941.full.pdf+html
    Complementary Therapies for Chemo-Neuropathy: An Integrative Oncologist's Bag of Tricks
    http://www.integrativeoncology-essentials.com/2013/06/complementary-therapies-for-chemo-neuropathy/
    °
  • Note: Oxaliplatin toxicity and oxaliplatin desensitization protocols -

    Oxaliplatin desensitization questions
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=35164#p246839
    Allergic reaction to Oxi
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43093#p304849
    Desensitization protocol for oxaliplatin
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57906&p=456018#p456018
    Hypersensitivity Reactions to Oxaliplatin and the Application of a Desensitization Protocol
    http://theoncologist.alphamedpress.org/content/9/5/546.full.pdf+html
    °
  • Oxaliplatin - Slower infusion rate. Normally, the Cycle 1 infusion is run at a slower rate (like 3 hours instead of the normal 2 hour infusion). This is so that they can better monitor the patient for reactions during the first infusion. From Cycle 2 onward, however, they will probably try to set up the infusion at the normal rate (like 2 hours to deliver the same amount of chemo that was delivered over a 3-hour span in the Cycle 1 infusion). This might be too fast for you. It would be less stressful on your system if they continued with the slower infusion rate from Cycle 2 onward. The down-side to this is that your infusion sessions would be an hour or more longer than standard if you choose to go with the slower setting. This is something that you could discuss with your oncologist.
    .
  • Oxaliplatin -Lower overall dose of oxaliplatin - I think the standard dose for oxaliplatin is 85mg/m2, but the fall-back dose for patients who cannot tolerate this level is 75mg/m2. It might be better for you over the long haul if you were given the lower dose instead of the standard dose. With the lower dose you would have almost all of the benefits of oxaliplatin, but would have the added possible benefit that you may be able to tolerate oxaliplatin for the treatment period as opposed to having to drop it completely halfway through. This is also something you could discuss with your oncologist.
    °
  • Note: 5-FU toxicity and DPD deficiency (Dihydropyrimidine dehydrogenase deficiency)

    Several sources indicate DPD Deficiency affects from three to eight percent of the population.

    Over 11 thousand new cancer patients can expect to have some degree of DPD deficiency. Unfortunately, this is not typically discovered until a cancer patient receives some form of 5-FU.

    In its most severe from, the combination of the deficiency and 5-FU toxicity has a 33% mortality rate. Thirteen hundred people die annually from 5-FU toxicity. 1300 people...if those same people were dying in plane crashes, by crazed gunmen, etc, there would be a media outrage. Instead, these are people dying quietly in hospitals and their homes.

    Genetic testing is readily available but not part of the standard of care. It may not be covered under insurance plans as part of treatment. The cost of testing is relatively inexpensive. If your treatment is going to include 5-FU based, DEMAND TO BE TESTED. Pass along this information and do everything you can to make testing a standard part of the use of this dangerous drug.
    Reference: http://dpd-deficiency.com/

    Dihydropyrimidine dehydrogenase deficiency (DPD deficiency)

    ColonClub thread: 5-FU & Xeloda Extremely Allergic-

NHMike
Posts: 1685
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Sun Apr 29, 2018 3:12 pm

Caat55 wrote:Part of the chemo is some pretty intense meds to help with side effects, nausea. They make Friday and Saturday okay but by Sunday I am beat. The cold intolerance is mentioned by all and it is hard to overstate how strange and uncomfortable it really can be. I am tough, thought it would be a nuisance but it is more than that. I wear oven mits to cut veggies, but end of second week can use thinner garden gloves but even 18 days out it is uncomfortable to slice strawberries, imagine holding an ice cube in between your fingers, the tingling and burning, that’s what those yummy berries felt like.
I choose you knows about my treatment, most people would never guess as I have gone about my days as I always have, work, volunteering, social engagements, gardening and hiking. I find that my energy drops and I have to plan a bit, conserve my energy is I want to make it through a night event.
I love potatoes, a comfort food, and they help with the bowel stuff. I haven’t taken any meds for it as yet. I did try the nausea meds but maybe not soon enough as they didn’t really help.
My burned bum has been helped by CBD salve, I don’t know if its the high quality oils, shea butter, essential oils or the cannibaboids, but it has relieves the pain and finally healing .
Best of luck.
S


I was wearing light gloves yesterday and this morning. It was in the 70s yesterdays and mid-50s today. I don't have to wear them but I feel slightly more comfortable. I'm about 17 days out from the Oxaliplatin.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

SteveNZ
Posts: 140
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SteveNZ » Sun Apr 29, 2018 4:29 pm

Deb m wrote:............... Prayer was they only thing that kept me sane through out the whole ordeal. It's just our cross in life that Our Lord wants us to carry. He will give you the strength to do so.

Praying for your well being along with everybody on the board.

I really like that.
I fellowship with the Salvation Army (uniform and all) and found it quite a test of faith getting cancer. I can share that for me personally I have learned so much and got closer to God (..I hope folk don't get upset but honestly it is true for me..) than ever before due to it all. For me there is great encouragement in that. But I would be lying to say all is well and I understand what is up.....? It is a bit like that hymn says,

When peace like a river attendeth my soul
and sorrows like sea billows roll..... etc ...... It is well with my soul which helps so much through this.

Bless you heaps Steve
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.


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