Folfox.. ugh

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MegTayMcc
Posts: 13
Joined: Wed Dec 28, 2016 10:27 pm

Folfox.. ugh

Postby MegTayMcc » Wed Apr 19, 2017 6:31 pm

Hi friends!
I'm looking for some advice on Folfox. I've searched many threads, but none are really answering my questions.. I'm hoping you can help. I'm just "coming back" from round 3. By coming back I mean, feeling somewhat normal, not extremely exhausted, emotional, nauseous, mood swingy, just all together foggy. It has taken 5-6 days after each treatment for the symptoms and most of the cold sensitivity to wear off. We switched meds up after the first treatment as I was extremely nauseous for the most part. Right now I'm taking Emend 3 day, Dexamethasone (day of), and zofran, or olanzapine when needed. My last treatment was so incredibly awful, I don't think I can handle it again, I've never been so sick in my life. It all hit with about 10 minutes left of infusion, nausea and vomiting began and lasted far too long. Is this my new norm? Did you poor people deal with this week after week? I haven't spoke with my oncologist yet about what changes we'll make next time, but damn sure something has to give. My liver counts were off, not enough to lower the dose but something that needed to be watched she said.

I'm a lucky one, and so thankful that I am technically "cancer free", I did chose to go ahead with APR surgery after being told my doctors were confident I had complete clinical response. Pathology showed nothing, the cancer was gone. I'm supposed to have 8 rounds of Folfox, but at this rate I can't even think of another. What happens going forward? If the oxali is lowered will I cope better, if so, lowered by how much? I'm really trying to give it my all, fight any last bit of this awful disease that could be left. Has anyone been in a similar position?

Thanks for listening to me complain, I would love some advice.
31/wife/mom/CAN
Rectal IIb - 08/16
ChemoRad - 09/16-11/16
APR - 01/17
Complete Pathological Response
Folfox 03/17-Present

JudiB
Posts: 62
Joined: Sun Mar 05, 2017 5:30 am

Re: Folfox.. ugh

Postby JudiB » Thu Apr 20, 2017 2:01 am

I am about to go into my 5th round of Folfox.(sorry not done a profile yet!)
I too was very sick for the first few but once nausea sorted it has got easier....still horrid but tolerable! With each round I feel a bit better emotionally. The neuropathy has become my worst effect but this will be dealt with. I think the most important thing is to tell your oncologist... I cried whilst telling him how bad I was feeling but he saw how low I had got and may reduce/take out oxi after 6 if things continue.
I understand totally how you feel and life now will be a bit up and down so make the most of the good days and be kind to yourself. We're allowed to feel down ..this us tough treatment!
I find this forum amazing....folks understand what we're going through and are so supportive it fills you up reading responses.
Take a day at a time.
Sending lots of hugs abd hoping the nausea is dealt with....it will be sorted and things wilk get easier, just jeep your onc informed and be honest about how you feel as they can sort the sickness.
Xxxxx Judi (T2N1bMo sigmoid colon/rectal section and now Folfox)
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started
June 2017 clear scan

PainInTheAss
Posts: 655
Joined: Tue Jul 02, 2013 3:08 am

Re: Folfox.. ugh

Postby PainInTheAss » Thu Apr 20, 2017 5:46 am

You poor thing! Chemo sucks!

But I never threw up, not even once. Regardless, I remember after my third or fourth infusion feeling this incredible sense of dread about the next one. I just couldn't imagine going through it all again even without throwing up. It really does help to litterally take one day at a time. Don't think about all the rounds you have left. Just get through today.

You should talk to your Oncologist about the possibility of lowering the dosage. I don't think there is a set percentage, so they can try different levels to find something you can tolerate, but I use the word tolerate loosely. I hated every minute of it,

You also should get a second or third opinion about how many rounds you are doing. A IIb with a complete pathological response might be a low enough risk just to do Xeloda for some Oncologists, or at least fewer rounds of oxi. I had a good response with just trace cells and my Oncologist recommended 6 rounds.
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
5/17 - PET clear? Follow up MRI to verify inflammation

sdino
Posts: 31
Joined: Tue Mar 28, 2017 5:32 pm

Re: Folfox.. ugh

Postby sdino » Thu Apr 20, 2017 6:42 am

Hi Meg – My Wife’s experience went this way:

Rounds 1-3 of FolFox+Avastin with Oxaliplatin – weak, cold sensitivity, out of work for 3 days.

Rounds 4-6 of FolFox+Avastin with Oxaliplatin - Very weak, cold sensitivity worsen, nausea, tingling in digits, constipated, out of work for 5 days.

Rounds 6-8 of FolFox+Avastin with Oxaliplatin - Very very weak, severe cold sensitivity, not eating or drinking for 5 days after chemo, nausea, constipated, Neuropathy setting in on foot/hands, loss of 30 lbs weight, out of work for 2 weeks.

Rounds 8-11 – Oxi Removed just Folfox+Avastin. All bad symptoms removed, minor weakness, legacy Neuropathy lessend, appetite back-gained 5 lbs back on weight, out of work for 2 days only.

The key according to both her Oncs, is to stave off irreparable damage caused by Oxi. In my Wife’s case, the Sloan Dr agreed fully with Roswell Onc and said it was a wise choice to remove Oxi and not push in case surgery or other types of treatment may be necessary in the future, since she may need her strength for other treatments. Each person reacts slight different to the Chemo Stuff. Since Oxi- has been removed, she is a happy camper as far as Chemo side-effects. Wish you the best.
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17

Basil
Posts: 112
Joined: Thu Mar 16, 2017 12:33 pm

Re: Folfox.. ugh

Postby Basil » Thu Apr 20, 2017 10:37 am

I'm currently on the pump for round 2. First round side effects were mainly loss of appetite and fatigue, with an afternoon of chemo brain. I had some minor foot and hand tingling this morning that has since resolved itself.

Sooooo, is this going to get worse round after round? A friend with the same diagnosis as me (rectal 3a) said the fatigue got worse but the acute effects were similar after each round and had similar durations. I'm getting the picture here that a good chunk of folks are seeing worse effects with each round.

The cold sensitivity is kinda cool. I pick up an ice pack and feel like my hand is charging energy that, with luck, I can fire off like a lightening bolt.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

DanInMN
Posts: 86
Joined: Mon Apr 02, 2012 11:18 pm

Re: Folfox.. ugh

Postby DanInMN » Thu Apr 20, 2017 11:03 am

I don't have any advice, other than to continue working with your oncologist to find the right compromises. It is likely things will improve with some tweaks.

I can empathize. Chemo is just a misery. I didn't throw up much, but it was a challenge balancing anti-nausea meds against the terrible anxiety they game me. I never felt like I could take another treatment. I'd have a week of just awfulness followed by a week of feeling more normal every time. You just have to get through the next one. Enjoy your better weeks. You CAN get through these treatments.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

SarahS
Posts: 44
Joined: Sat Mar 11, 2017 12:44 pm

Re: Folfox.. ugh

Postby SarahS » Thu Apr 20, 2017 12:01 pm

For my husband the first 2 Folfox treatments were the worst and it has actually got better with further treatments
With the first one he had extreme nausea and vomiting, and didn't eat solid food for about 4-5 days
He had nausea with the second but no vomiting but he did begin to lose his hair and fatigue has been an issue
He never really experienced the cold sensitivity, handling cold things has never been an issue neither has eating or drinking anything cold
He did find the side effects differed with every single treatment, the fatigue was the worst following rounds 3 and 4 , not so much 5 or 6
He did reduce the oxi by 30% on round 5 and 50% on round 6 and I am sure this has helped with the fatigue and appetite
Side effects seem to be as individual as cancer so see how you get on and ask for tweaks in dosage to make things more manageable
There were times especially on rounds 1 and 2 where he said he didn't think he'd be able to carry on, but he did and it gets more manageable.
You can get through this :)
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

MegTayMcc
Posts: 13
Joined: Wed Dec 28, 2016 10:27 pm

Re: Folfox.. ugh

Postby MegTayMcc » Thu Apr 20, 2017 2:36 pm

Basil wrote:
The cold sensitivity is kinda cool. I pick up an ice pack and feel like my hand is charging energy that, with luck, I can fire off like a lightening bolt.


Hilarious! Thanks for the laugh.. every time I stick my hand in the freezer I'm gonna see lightening bolts. Lol

ALL of you guys are awesome.. I appreciate your responses more than you'll know. I've never been a sick person, I've never even had a flu bug before and can count the number of times I've ever vomited on one hand, until last week that is. So when it hit me so hard, I was scared.

sdino - you mentioned weak, and weaker. I was so weak, and still am! Almost as if I haven't eaten in days and just did a power workout, but haven't. What a crummy feeling.

DanInMN - what anxiety meds were you on? I was trying to survive on emend and zofran, and was staying away from the olanzapine mostly because I didn't really want to feel any more foggy. But I nearly went nuts! I was all over the map from sad, to somewhat happy, to loving, to miserable. Maybe I need meds. Maybe I am nuts.

Thanks again, so so much. It helps to let things out and clear my mind. I've got my list of questions for the doc ready for next week.
31/wife/mom/CAN
Rectal IIb - 08/16
ChemoRad - 09/16-11/16
APR - 01/17
Complete Pathological Response
Folfox 03/17-Present

TXLiz
Posts: 179
Joined: Thu Sep 22, 2016 3:31 pm

Re: Folfox.. ugh

Postby TXLiz » Thu Apr 20, 2017 2:57 pm

It sucks. It really does. But don't give up because it's your best chance to beat this disease. Or delay it...

Throw the kitchen sink at it, is what my onc said.

I felt sick and weak throughout, and the last 4 rounds, I cried while driving myself to chemo. I would listen to songs I liked and sing along, telling myself it will be over soon. When it comes down to it, even though it's a hated process, it must be done.

Drink as much water as you can. Drinking water really helped me feel less nauseous.

I had the tingling in feet and hands, the cold drink or food broken glass feel in my throat, the all food tastes like chemical drenched cardboard, the anemia and fatigue and weakness, constant nausea. I am a month out of 12 rounds and feel so much better. I have some lingering issues but nothing major.

You can and will get through it. I promise! You just have to take one day, one treatment at a time.

Prayers and hugs!
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"

sdino
Posts: 31
Joined: Tue Mar 28, 2017 5:32 pm

Re: Folfox.. ugh

Postby sdino » Thu Apr 20, 2017 6:00 pm

Hi Meg – I honestly think you are moving in a good direction by working out. Please make sure you are hydrated, My Wife got in some chemo effects med problems by not drinking enough fluids. I threaten her with everything and even threaten to jump her bones (hehehe) if she did not comply. I enlisted support from our many friends to help her out during bad chemo days with food, spiritual support, ect, ect. But I made it clear to them when she was down and out, that she needed her space. She pushed herself to help our daughters in their everyday issues which is amazing !!! You are on the right track, keep on keepin on …. dear ! steve
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17

Stewsbetty
Posts: 86
Joined: Thu Jul 14, 2016 7:08 am

Re: Folfox.. ugh

Postby Stewsbetty » Fri Apr 21, 2017 1:53 am

Hi meg. I finished up my 12th round in February and want to encourage you that I feel miles better just 2 months after. I had a really rough go in round 2 and my dr dropped my dosage by 1/2. I did a couple of half doses and then we decided to raise it up to 3/4. First we raised the oxi and I did fine with that and then the flouroracil. That was the tougher one for me. It is the one causing the nausea and diarrhea. Luckily I was able to tolerate the 3/4 dose and kept that up for the remaining 6 treatments. I would definitely talk to your dr about possibly lowering the dosage. I know chemo isn't a walk in the park but I really don't think i could have made all 12 at full dosage. The side effects I got with the oxi were cold sensitivity in throats and hands for a few days. The red puffy hands for a few days and the numbness in my feet for a bit. To me these were easier to handle side effects than the nausea and diarrhea.
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4

DanInMN
Posts: 86
Joined: Mon Apr 02, 2012 11:18 pm

Re: Folfox.. ugh

Postby DanInMN » Fri Apr 21, 2017 3:07 pm

MegTayMcc wrote:
Basil wrote:DanInMN - what anxiety meds were you on?


I genuinely can't remember. Anxiety was terrible for me at first. It was so bad the first time I dropped off a prescription at the pharmacist but could not wait the 5 minutes they said it would take to fill it. I had to have my wife take off from work to pick it up. Even on the meds, I was in a state of panic. My oncologist was able to adjust my treatment so that it was not a serious problem.

I won't pretend the whole thing is not a nightmare. It is very, very hard. But you are getting though it, and can continue to do so. There are a lot of us rooting for you.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed


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