Newbie...just started Folfox

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JudiB
Posts: 13
Joined: Sun Mar 05, 2017 5:30 am

Newbie...just started Folfox

Postby JudiB » Sun Mar 05, 2017 7:46 am

Following routine screening, which led to coloscopy, a large polyp was found but biopsy was clear. I underwent a resection of part of sigmoid colon and rectum in January. As all seemed clear, I was very shocked when my surgeon told me that the polyp was cancerous and the cancer was also found in 2 of the 12 lymph nodes removed during the operation. I think that my disbelief was compounded because my husband had a prostatectomy in November, again following cancer being diagnosed after routine screening. It just didn't seem possible that both of us had been diagnosed with cancer within a couple of months of each other.
I am usually a very positive person, always on the move , someone who generally sees the up-side of a situation but this threatens to change that. I am struggling to find much that is positive at the moment.
I started Folfox last week and, despite the meds, was very sick and couldn't keep anything, even water, down for a couple of days. Things improved by the end of the week and I am now eating normally but I feel "dull" and not myself at all.
We have a little farm and doing some of the animal stuff helps to keep some normality but the thought of feeling like this fir 6 months fills me with dread.
There are positives. I have a lovely husband and the animals are very comforting to be around.
Did others of you feel as I do and did it get better?
Hey, its stopped raining ...another positive?!!

DarknessEmbraced
Posts: 2471
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Newbie...just started Folfox

Postby DarknessEmbraced » Sun Mar 05, 2017 1:44 pm

I'm sorry both you and your husband have cancer!*hugs* I hope your chemo side effects get better!*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 01/21/2016
NED 11/10/16

Lee
Posts: 4529
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newbie...just started Folfox

Postby Lee » Sun Mar 05, 2017 4:20 pm

Are you on the pump or the pills?

For me, I was on the pump and here are a few things that helped me.

Drink tons of water a day or two prior to infusion. Dehydration could bring on a hold of other problems including nausea.

On way to infusion, I always ate an egg cheese breakfast sandwich. Figured the eggs gave me protein and bread gave me carbs. While on chemo, eat small meals several times a day vs 3 meals a day. Eat what sound/feels good. Even if that means junk food. For me, food in stomach kept nausea at bay. So don't worry about eating healthy while on chemo. Sometimes supplement your diet with Ensure or something like that can help with vitamins and minerals.

The one thing I really want to stress, again eat and drink ONLY what sounds or feels good. If you force (gag) something down, you could risk the chance of getting an inversion to that food or water. I am so grateful to my chemo nurse. She noticed I was gagging water down. Told me to stop drinking water, PERIOD, until after I finished my chemo treatment. Drink soda, OJ, whatever sounds good. Today I can drink water (love it) without issues.

One I ate a Boca burger. Was sick of it when i finished it, will never eat one again.

Food will taste metallic after awhile, know that is normal.

Tell your Dr of your reaction.

Make sure the Onc is giving you med PRIOR to infusion to help control the nausea. There is also some pill that some people take prior to infusion that helps with nausea. Not sure of name. Dr should know.

Ginger is suppose to be good to control nausea. Ginger snap cookies, Ginger Ale, Ginger root, etc.

Hope this helps some, there is nothing worse than nausea.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Lee
Posts: 4529
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newbie...just started Folfox

Postby Lee » Sun Mar 05, 2017 5:23 pm

JudiB wrote:I started Folfox last week and, despite the meds, was very sick and couldn't keep anything, even water, down for a couple of days. Things improved by the end of the week and I am now eating normally but I feel "dull" and not myself at all.
W


Wanted to ask, any chance you could be sick? Flu season is rampant at this time.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Beckster
Posts: 42
Joined: Thu Jan 12, 2017 3:01 pm

Re: Newbie...just started Folfox

Postby Beckster » Sun Mar 05, 2017 5:32 pm

Hi Judi

Sorry you first treatment did not go well. It is very important that you discuss any concerns with your doctor. Did they give you anti nausea medicine? Before I started my treatments, they gave me prescriptions for 3 different types, depending on the degree. I am fortunate that I did not have any nausea; however, I also feel "dull" and get tired more quickly. I am like you...my husband calls me the energized bunny! I am half way through my treatments, and I am not my normal self, but I can function. Its now becoming a norm for me. I go to bed earlier and try to exercise. Exercise will help the tiredness. Looking forward to June!

I hope you second treatment goes better than the first!

Beckster
57/Female
DX:(CC) 10/19/16
11/4/16- Laparoscopic right hemi(cecum)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (biopsy from colonoscopy)
TNM: T3N0M0
Stage : Stage IIA
Positive lymph nodes: 0 out of 24
Preoperative CEA- 1.9, Postop(8weeks from surgery) 2.5
Lymphovascular invasion
Surgical margins: clear
MSI-Negative
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/2017- Xeloda monotherapy

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horizon
Posts: 1338
Joined: Tue Apr 12, 2011 10:10 pm

Re: Newbie...just started Folfox

Postby horizon » Sun Mar 05, 2017 6:09 pm

I had similar surgery and I had a similar result with my lymph nodes. I also remember thinking how in the heck am I going to do 6 months of chemo? I remember it like it was yesterday but that was over five years ago. It is possible for things to get better.

It's already been mentioned but staying hydrated is huge. Especially after the infusion to flush is out of your system. Did they give you meds for nausea?
I'm just a dude who still can't believe he had a resection and went through chemo (currently 5 years NED). Is this real life?

JudiB
Posts: 13
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Mon Mar 06, 2017 3:40 am

Thank you everyone for your kind and helpful words, at least I can share my woes and get lots of useful tips from folks who have been where I am!
Yes, I had lots of anti- nausea meds. I had the 3 day Emend .. 1 each morning first 3 days. I also had Solumedrol and Kytril pre-med infusions before day 1 chemo. Then I had Prednisone for after chemo finished, plus Primperan (meticlopromide) in case of breakthrough nausea! The onc seemed to have it covered....but it failed!
He said at the beginning that once nausea cuts in, it's hard to stop, hence giving "belt and braces" straight away.
It was on the return journey on day 2 that I began vomitting. That morning I had only the Emend. I started the Primperan during the afternoon after the pump was disconnected and they helped me feel less nauseaous, but I continued to vomit if I tried eating.
The neuropathy is ok in the house but by the time I have put on enough gloves to stop it, its hard to do the animal stuff that will keep me sane!
No Lee, I'm sure I'm not sick, definitely the chemo.
I am drinking at least 3 litres of, mainly water each day as I reckon it will flush everything out of my system.
I don't see my onc until after next weeks chemo, so plan to speak to the nurses to see if there is a better way for day 2.
One thing that crossed my mind is that I can be car sick but not in the front seats where I always travel. Maybe the chemo made me extra- sensitive to travel sickness? I have ordered sea bands for accupressure points to wear next time.
I am generally very active... Have to be with a farm, but what sort if exercise do folks do on top? We enjoy walking abd plan to go this week but on the bad days...??! We also go to a local Breton dance class each week but not last week... Might try this week as seeing everyone helps as much as the dancing!

By the way we are in France so the drugs may have different trade names.

Today feels like a better day..... as long as I don't think about next chemo! I

Thank all you lovely people for responding to my post.
Xxxxx

mct
Posts: 26
Joined: Sat Nov 12, 2016 10:08 pm

Re: Newbie...just started Folfox

Postby mct » Mon Mar 06, 2017 3:41 am

Hello JudiB

I'm sorry you find yourself here. I understand the shock you feel. Nothing prepares you to hear you have cancer. And, shortly after hearing of your husband's cancer, must feel so overwhelming. I haven't had Folfox so can't offer advice, just wanted to say hello and hang in there. I hope better days are ahead for you and your husband.

Mich
Diagnosed rectal cancer Nov 2016, T3N0M0
28 days rads/Xeloda - finished Jan 19 2017
Surgery mid Mar 2017

PainInTheAss
Posts: 604
Joined: Tue Jul 02, 2013 3:08 am

Re: Newbie...just started Folfox

Postby PainInTheAss » Mon Mar 06, 2017 5:42 am

JudiB wrote:Following routine screening, which led to coloscopy, a large polyp was found but biopsy was clear. I underwent a resection of part of sigmoid colon and rectum in January. As all seemed clear, I was very shocked when my surgeon told me that the polyp was cancerous and the cancer was also found in 2 of the 12 lymph nodes removed during the operation. I think that my disbelief was compounded because my husband had a prostatectomy in November, again following cancer being diagnosed after routine screening. It just didn't seem possible that both of us had been diagnosed with cancer within a couple of months of each other.
I am usually a very positive person, always on the move , someone who generally sees the up-side of a situation but this threatens to change that. I am struggling to find much that is positive at the moment.
I started Folfox last week and, despite the meds, was very sick and couldn't keep anything, even water, down for a couple of days. Things improved by the end of the week and I am now eating normally but I feel "dull" and not myself at all.
We have a little farm and doing some of the animal stuff helps to keep some normality but the thought of feeling like this fir 6 months fills me with dread.
There are positives. I have a lovely husband and the animals are very comforting to be around.
Did others of you feel as I do and did it get better?
Hey, its stopped raining ...another positive?!!


I hate to be the bearer of bad news, but I felt worse with each infusion. I was mostly very, very, very tired after about 4 rounds. It is really difficult and I found myself crying a lot over little things. It's easy to feel down when you feel terrible. It's been three years since treatment ended, and I mostly feel like my old self again, but it took a loooooong time. Be patient. Just remember that this is about saving your life. Each clear scan I get now tells me that it was all worth it.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6

User avatar
SEWHAPPY
Posts: 83
Joined: Tue Nov 15, 2016 4:25 pm

Re: Newbie...just started Folfox

Postby SEWHAPPY » Mon Mar 06, 2017 4:04 pm

I am 4 treatments in and although they have changed slightly time to time - some symptoms worse some better, some new, some skipped. Don't panic - it may not get worse and you will likely find a combination of tricks to make the best of it. The first one was worse for me because I was so anxious! Many folks also add an anxiety medication to their options just to stay on an even keel. Best of luck to you! Laurie
Female age 51.
CC diagnosed 10/13/16 at first colonoscopy.
Lap colon resection 11/21/16, removed ovary & fallopian tube.
T4N0M0, stage IIC.
Lynch negative.
Power port installed 12/19/16.
FOLFOX will start 12/28/16.

User avatar
LPL
Posts: 105
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Newbie...just started Folfox

Postby LPL » Mon Mar 06, 2017 6:03 pm

Hi JudiB,

I'm also in France :wink:
So sorry to hear both your husband and yourself have gotten cancer diagnoses. It must be a surreal experience!
My husband is the one in the family diagnosed with Colon cancer - so we are not in the same boat, but I had a trafik accident in October-16 (in a wheelchair for months due to fractures 'all over') so we have had a very bad year 2016 (and ongoing) in the family.

Hubby had 4 Folfox before his liver(mets) surgery and 8 after, of these 8, Oxilaplatin was 1/2 dose in 2 and totally excluded in the last 3 chemo - this was due to periferal neuropathy.
Hubby did not have any nausia but he had another Bad reaction that you might want to be aware of can happen.
He got Steroid induced hyperglycemia, diagnosed after 3 chemo.
Please read here: "Glucocorticoid-induced hyperglycemia is common in patients undergoing cancer treatment ... We recommend that all cancer patients receiving gc be screened for hyperglycemia at least 4–6 hours after gc administration." 2013 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3851349/ .
Hubby drank A Lot of water and I thought/said to him that is good for flushing out the chemo - he had No problem what so ever drinking A Lot of water But that was of course due to the hyperglycemia...
I noticed that you Judi said:
"I am drinking at least 3 litres of, mainly water each day as I reckon it will flush everything out of my system. " Maybe that is normal for you? Just wanted to mention what happened to hubby.
Our experience is that to test blood Glucos "at least 4-6 hours" after giving the 'Glucocorticoid' is not something they care about/prioritize at our hospital. Our Oncologists said to hubby that what happened to him was very rare ! Well, not according to that article...

After they took away the steroids when hubby got his chemo, he felt the treatments were manageble, well he did feel the neuropathy and when he told the onc that she cut the Oxi in half and then removed it.

I hope your next chemo will be fine for you !! Please let us know.
Kind Regards /LPL
DH @65 Emergency colostomy 3/18/16
DX: CC recto-sigmoid junction 4/11
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets:3 Liver resectable
T4aN1bM1a Stage IVa 2/9 Ln
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
Chemo: 4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open resections):
3/18 Colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

JudiB
Posts: 13
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Tue Mar 07, 2017 3:33 am

Lpl... I will watch the water issue. I am only drinking so much because I want to flush everything out as quickly as I can! I don't really enjoy or want to drink so much!
It is also goid to hear that there is someone with experience of things in France. You have had a hard time of it... When you are in the middle of your own crisis it is easy to think it's only you!
Now into second week after chemo and feeling better by the day, just trying not to think about next session.
Will post after next one... Hopefully more positive!!
Thank you for taking the time to post a reply and to others as well. Xxxx

cynthia_b
Posts: 4
Joined: Mon Mar 06, 2017 6:41 pm
Facebook Username: Cynthia Bardwell

Re: Newbie...just started Folfox

Postby cynthia_b » Tue Mar 07, 2017 8:00 am

Hi Newbie, I am very early into this process as having just had a colon resection in late Feb and now healing before meeting oncologists to start chemo. I am more fearful of chemo than surgery. I am hopeful you will feel better in upcoming rounds. Wondering how often you will be receiving treatment? Good luck.
1/21/17 Diagnosed: Stage 2 CC, Adenocarcinoma; Distal Sigmoid
CT Scans Clean
2/21 Colon Resection
2/28 Biopsy 1/18 nodes affected - Stage 3

Caroline1980
Posts: 2
Joined: Mon Mar 06, 2017 4:02 pm

Re: Newbie...just started Folfox

Postby Caroline1980 » Tue Mar 07, 2017 11:25 am

I'm sorry you're feeling so awful. I'm on the pill version with 2 weeks on then 1 week off. My first cycle was awful and I couldn't keep any food down. It was either direahhea or vomit. I was given different nausea pills and was basically told to use right away. Soon I just took the nausea pills even if I had no need to be ready. I disliked water and added crystal light to it. I also drank a lot of tea. Eat anything that sounds good. When I could eat real food I often ate noodles, potatoes, rice cakes with peanut butter, crackers. Grapes worked but got too tart on my lips. I really had to gain weight and get nutrients so I had many ensures and juice. Small portions throughout the day also helped. Eat with others to enjoy food. I used small plates. Just eat whatever and when you feel up to it. I tried ginger tea, but that smell made me nauseous.

I was so sick that I went back to the hospital. It turns out that my body has a gene that can't handle chemo will. My oncologist has decreased the amount and slowly increasing. Perhaps your dose is too strong to handle.

I also felt very down and not myself. My family was everything and helped uplift my spirits. Do little things that you enjoy. I love reading but was too tired, so I sometimes listened to books. I watched movies. And I moved whenever I could even short walks around the house. Small outings to the store was exciting and often draining. Rest when you need to but remember to move. I told myself that this is just temporary to feel better.

Best luck!

Stewsbetty
Posts: 47
Joined: Thu Jul 14, 2016 7:08 am

Re: Newbie...just started Folfox

Postby Stewsbetty » Tue Mar 07, 2017 7:37 pm

Hi Judi,

I am sorry that you are having to take this journey. I have just finished my 12 rounds of FOLFOX and it was a challenging few months. My second round I had a rough time with diarrhea and nausea and ended up dehydrated. This landed me a week in hospital. After that my oncologist dropped my dose by half. We gradually raised it to 3/4 by the 6th round. This was much easier for my body to handle and I didn't have any more serious issues. I am not sure whether you have access to marijuana oil in France or not but I was able to get a medical prescription. That helped so much with the nausea. There was only 2-3 days in the cycle where I would need to take it but it really helped with nausea and even gave me more of an appetite. I used the oil that is higher in CBD and lower in THC. I do have to say that the time passes fairly slowly but there is an end. I am glad to hear you are drinking lots because there are many difficulties that can arise from dehydration. I have actually become fond of drinking warm water! I live in northern Canada and we experienced lots of cold weather this year (many days colder than -25C). I just stayed inside a lot. Long johns, gloves and toques were necessary gear for going out. I hope that you have someone nearby that can help with the chores if you become unable to do them. This is a good group for asking questions of and for doing the venting that all of us understand. \

Beth
42yo F
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
6 out of 10 lymph involved


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