Starting Folfox and Avastin tomorrow

Please feel free to read, share your thoughts, your stories and connect with others!
pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Starting Folfox and Avastin tomorrow

Postby pdp497 » Fri Aug 11, 2017 10:50 am

I had not really been thinking about side effects and just looking toward treatment but now one day out I am getting anxious. What have your experiences been like what should I be looking out for on the unexpected side effect front? How effective has the treatment been for those of you out there that have been on it?
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

veckon
Posts: 112
Joined: Thu Jul 27, 2017 7:44 am

Re: Starting Folfox and Avastin tomorrow

Postby veckon » Fri Aug 11, 2017 11:48 am

pdp497 wrote:I had not really been thinking about side effects and just looking toward treatment but now one day out I am getting anxious. What have your experiences been like what should I be looking out for on the unexpected side effect front? How effective has the treatment been for those of you out there that have been on it?


I tolerated FOLFOX well for the first couple of cycles, but the effects are cumulative and degenerative so in my experience the side effects got exponentially worse every cycle. I missed a solid two months of work over my six months of chemo. I felt horrible and guilty about how bad I felt, to the point where getting out of bed was a serious ordeal. My advice is to walk every day to help combat the worst of the fatigue. The neuropathy also sucks and remains with me to this day. Probably permanent too. The fatigue ranged from moderate at the beginning to severe by the end.

I ended up needing two blood and platelet transfusions (not common but possible if it affects your rbc count and platelets), a few white blood cell injections, and tons of marijuana to get through it. My nausea was so bad it felt like I was constantly on the verge of throwing up violently and after trying every single nausea medication (many of which are also used as anti-psychotics used to calm violent skitzophrenic episodes) my doctor could think of they just pointed me toward medical marijuana and honestly it is what let me get through treatment until Keytruda was FDA approved. Other people can probably testify to how much it can help nausea and other side effects of chemo. I couldn’t eat normally either due to persistent thrush (which actually led to my only chemo related hospitalization when it actually caussd an infection, and I learned that was a thing to worry about beyond the flu), no appetite (food became quite vile). Thrush made my mouth feel like it was constantly on fire.

Also, hate to scare you but Oxaliplatin almost killed me during infusion once. Most terrifying time of my life, throat closing up, losing consciousness and being revived and then told you had an allergic reaction but they caught it before cardiac arrest (woohoo). To make matters worse, to fix my reaction they decided to deliver the same amount of Oxaliplatin over nearly 8 hours and first douse me in antihistamines to combat the allergy. Sloan Kettering to their great credit tries hard to make long infusions tolerable by giving you a bed and a more private area than usual, but it is pretty crowded so often I would just be given a normal chemo chair for the whole time.

But don’t lose hope. I got through it and have been responding well to immunotherapy with keytruda. Every single tumor is more than 50% smaller than at diagnosis so far after 3 keytruda infusions. FOLFOX kept my primary rectal tumor stable and shrunk liver metastases a bit for six months so it did do something. Unfortunately my cancer spread to my peritoneum during this time and chemo can’t treat those tumors so my peritoneal carcinomatosis went from barely visible when I had liver surgery (aborted midway due to the extent of the peritoneal spread) to being a few inches big in like two months. I could feel the tumor in my abdomen even. Six weeks into immunotherapy doctor said he could no longer feel the abdominal tumor. Just got CT back: more than 60% and maybe more of it has regressed so far.

In conclusion, it sucks but if you have a plan moving past it as part of a curative treatment plan, I think it is worth it. Just my opinion but if it wasn’t adjuvant with surgery (that was the plan at least) I wouldn’t have done it. The suffering is too much if there is no light at the end of the tunnel. Just my anecdotal experience and opinion after having gone through it. Everyone is different, and I hope you will experience none of what I have.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
Robino1
Posts: 227
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Starting Folfox and Avastin tomorrow

Postby Robino1 » Fri Aug 11, 2017 12:22 pm

pdp497 wrote:I had not really been thinking about side effects and just looking toward treatment but now one day out I am getting anxious. What have your experiences been like what should I be looking out for on the unexpected side effect front? How effective has the treatment been for those of you out there that have been on it?


I finally created an account just to help with this question.

I'm now 4 treatments in. The first one was just Oxi and 5Fu along with the anti nausea etc. Avastin didn't start to be administered until the second round.

First round should be pretty smooth. You will probably experience the sensitivity to cold things. Example holding cold objects from the fridge, drinking cold liquids and possibly first bite.

The only side effect I have from 5FU is the nasty mouth, thrush type thing. I mentioned it to my onc and she prescribed 'Magic mouthwash'. It works wonders. I disconnect on Saturday's and the mouth crap starts on Mondays. It is now Friday and most is gone butt (see I have been reading this forum ;) ) I will need it for a couple more days.

The first day is scary, we've never done this before! The second session is better.

Are you doing a port? If so, you can ask for a cream you put on an hour before your appointment to numb the area. A nice dollop and cover with a bit of plastic wrap so you don't stain your clothes.

Also wear a shirt that can easily access the port.

Not everyone experiences the same effects. Just go in knowing that they are temporary. You will get through this and you will win! Keep the goal in your mind.

Good luck!
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Starting Folfox and Avastin tomorrow

Postby Volfan » Fri Aug 11, 2017 12:31 pm

If two replies show up from me I apologize. I must of hit the wrong button because it disappeared. Lol

On the topic of side effects the severity seems to vary from person to person from what I've read here.
I've kind of have two categories for my side effects.
Total pain in the butt category: fatigue and stomach issues. These two here can change how I go about my day. Get up to go to work and get ready then start to walk out and all of a sudden I start pooping for the next 30 minutes so late for work. Or be at work and fatigue hits and I can barely make to my car I'm so tired. This is not an all the time thing. Just hit or miss.
Category two is inconvenience side effects: first bite, hiccups(the first night of this wife thought we were having an earthquake the way the bed was shaking), not able to grab something cold, calf muscle stiffness which just started.

As far as how the treatment is working doc seems to be pleased so far. I started treatment the first of April. Avastin was added two months after starting Folfox. Had my first scan since starting treatment 2 1/2 months in and my two liver mets shrunk on average 40% and the rectal cancer had significant response.
My cea was 103 when I started treatment and is 7.6 right now. New number will be available this afternoon. Doc checks it once a month.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Re: Starting Folfox and Avastin tomorrow

Postby NHMike » Fri Aug 11, 2017 2:06 pm

This is the end of my second week on Xeloda (the 5 FU part of FOLFOX) and the side-effects have been GI weirdness (either constipation or, rarely, diarrhea) and tiredness. I'm also on radiation and some of this might be from that as well. I'm working through it so far though I have the option of working from home and that makes it easier in case I need to run to the bathroom.

I will likely be on XELOX (oral Xeloda + Oxaliplatin) after surgery so I'll get to experience the platinum stuff eventually.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: Starting Folfox and Avastin tomorrow

Postby pdp497 » Fri Aug 11, 2017 8:05 pm

Thanks for the information everyone. It is a little easier to prepare with some information. Robino1 unfortunately Injad to get a PICC line placed for now because they wanted to start treatment and the wait at MD Anderson for a port was too long. I will get the port eventually. Volga's I hope you got good news from the doc today.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

tater
Posts: 31
Joined: Wed Jul 19, 2017 5:53 pm

Re: Starting Folfox and Avastin tomorrow

Postby tater » Fri Aug 11, 2017 8:27 pm

Volfan wrote:If two replies show up from me I apologize. I must of hit the wrong button because it disappeared. Lol

On the topic of side effects the severity seems to vary from person to person from what I've read here.
I've kind of have two categories for my side effects.
Total pain in the butt category: fatigue and stomach issues. These two here can change how I go about my day. Get up to go to work and get ready then start to walk out and all of a sudden I start pooping for the next 30 minutes so late for work. Or be at work and fatigue hits and I can barely make to my car I'm so tired. This is not an all the time thing. Just hit or miss.
Category two is inconvenience side effects: first bite, hiccups(the first night of this wife thought we were having an earthquake the way the bed was shaking), not able to grab something cold, calf muscle stiffness which just started.

As far as how the treatment is working doc seems to be pleased so far. I started treatment the first of April. Avastin was added two months after starting Folfox. Had my first scan since starting treatment 2 1/2 months in and my two liver mets shrunk on average 40% and the rectal cancer had significant response.
My cea was 103 when I started treatment and is 7.6 right now. New number will be available this afternoon. Doc checks it once a month.



Thanks awesome results so far. If you don't mind me asking what size were your liver mets?
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 17
Stage 4 Liver mets 3(5mm-6mm) and iliac node July 17, 17
FOLFOX + Avistan July 18 CEA 2.3

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: Starting Folfox and Avastin tomorrow

Postby Basil » Fri Aug 11, 2017 8:42 pm

pdp497 wrote:Thanks for the information everyone. It is a little easier to prepare with some information. Robino1 unfortunately Injad to get a PICC line placed for now because they wanted to start treatment and the wait at MD Anderson for a port was too long. I will get the port eventually. Volga's I hope you got good news from the doc today.


I had a picc line placed for my first treatment because they couldn't get me a port placement in time. No biggie. Port surgery is a breeze, by the way, and it makes infusions and ivs much easier.
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 ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Starting Folfox and Avastin tomorrow

Postby Volfan » Fri Aug 11, 2017 9:02 pm

tater wrote:
Volfan wrote:If two replies show up from me I apologize. I must of hit the wrong button because it disappeared. Lol

On the topic of side effects the severity seems to vary from person to person from what I've read here.
I've kind of have two categories for my side effects.
Total pain in the butt category: fatigue and stomach issues. These two here can change how I go about my day. Get up to go to work and get ready then start to walk out and all of a sudden I start pooping for the next 30 minutes so late for work. Or be at work and fatigue hits and I can barely make to my car I'm so tired. This is not an all the time thing. Just hit or miss.
Category two is inconvenience side effects: first bite, hiccups(the first night of this wife thought we were having an earthquake the way the bed was shaking), not able to grab something cold, calf muscle stiffness which just started.

As far as how the treatment is working doc seems to be pleased so far. I started treatment the first of April. Avastin was added two months after starting Folfox. Had my first scan since starting treatment 2 1/2 months in and my two liver mets shrunk on average 40% and the rectal cancer had significant response.
My cea was 103 when I started treatment and is 7.6 right now. New number will be available this afternoon. Doc checks it once a month.



Thanks awesome results so far. If you don't mind me asking what size were your liver mets?


They started out at:
1.9x2.1 cm
2.4x3.3 cm
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Starting Folfox and Avastin tomorrow

Postby Volfan » Sun Aug 13, 2017 9:27 am

pdp497 wrote:I had not really been thinking about side effects and just looking toward treatment but now one day out I am getting anxious. What have your experiences been like what should I be looking out for on the unexpected side effect front? How effective has the treatment been for those of you out there that have been on it?


Hope the treatment has gone well for you.
My question is how many times have you drag that damn pump across the floor when getting up because you forget about it?
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Starting Folfox and Avastin tomorrow

Postby benben » Sun Aug 13, 2017 10:42 am

The worst side effects for me so far have been what the chemo is doing specifically to the body.
White Blood counts tanking, platelets tanking, swinging blood pressures from 100/55 to 145/95. Low after waking, high a couple hours up.
I've completed 6 rounds. I think I'll be postponing round 7 due to platelets. My last test platelets were at 50. I also managed to cut
myself yesterday while trying to fix a machine I use for light manufacturing. What would probably have normally been a scrape turned
into a pretty bloody event. With the low platelets any bleeding is quite worrisome. Not to mention the increased risk of infection at wound sites due to low WBC.
I've received a total of 11 growth factor shots during my last 4 rounds - another to be had on monday. Neuropathy wise its been minor. This round it increased a bit.
Mostly just numbness in hands. A little cold sensitivity - not bad, first bite syndrome a couple days. The runs seem to set in this session more as well.
about 5 days of runs, combated with Imodium, but still there towards end of day.

Good luck, some peeps do fine, others get bad neuropathy, and some get the tanking blood counts.
Seems hit or miss. I'll probably stop after 8 sessions, cause the whole blood count thing is major concern/drag.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

Joannerogers
Posts: 250
Joined: Tue Jun 16, 2015 4:50 pm

Re: Starting Folfox and Avastin tomorrow

Postby Joannerogers » Sun Aug 13, 2017 11:15 am

Good luck to you! I had the folfox plus avastin. I consider myself extremely lucky . Originally my stage 4 was inoperable but the folfox and avastin kicked butt! The effects are cumulative, the first few were fine, I still worked while getting them. Gradually fatigue gets worse, especially 2 days after fu finishes. Everything gets worse as you count down your infusions...cold sensitivity, first bite,muscle spasms, no appetite, neuropathy. Medical marijuana if you can get it will help with appetite. I only needed one treatment lol(I had the real stuff since the medical isn't legal here).

After 6 months and lots of prayers the tumors were surgically manageable!

The only long term effects for me are the foot neuropathy and occasional muscle spasms in my hands.

I wish you all the best!
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: Starting Folfox and Avastin tomorrow

Postby pdp497 » Sun Aug 13, 2017 6:01 pm

First treatment is going okay so far. A little cold sensitivity and some diarrhea. Getting pump off tomorrow So will have to see how I feel after that but I hope it won't we too bad. The pump is an annoyance but not so bad. I am hoping they will teach me how to remove it myself so I can head home after future treatments. I've now been in Houston for almost two weeks when I was expecting 3-5 days so a night in me own bed seems amazing to me.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Re: Starting Folfox and Avastin tomorrow

Postby NHMike » Sun Aug 13, 2017 6:08 pm

Glad things are going well so far.

Could you describe the logistics for those of us that will likely be doing this in the future?

Do you go to an infusion center to get the pump and then bring it home or to a hotel and then bring it back or are you in the treatment center for the whole time (seems unlikely to me but I really don't know)? I assume that you have the pump on right now, correct?
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

User avatar
Robino1
Posts: 227
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Starting Folfox and Avastin tomorrow

Postby Robino1 » Sun Aug 13, 2017 6:40 pm

This is the way it works with my treatment:

Go in and get blood drawn to check levels
After the blood results come back, start out with anti nausea meds and whatever else is needed such as Avastin
Oxi is next
Flush that then a push of 5FU (syringe full)
Hook up to the pump, to deliver the rest of the 5FU over a 48 hour period, go home with pump.
Go back to have them disconnect and flush the line.

You spend hours at the chemo center. I take a book, sudoku, iPad, headphones and a lot of snacks and water. Oh and my favorite blanket. ;)

The first day I found that I don't get the nausea until later in the day after the pump is disconnected. I take an anti nausea med in the early afternoon then another in the evening. It's worked to keep from getting sick or even feeling sick....so far. *knock on wood* :)
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(


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



Who is online

Users browsing this forum: Bing [Bot], TheSmallMan, Writingdoc2 and 39 guests