Stopping Folfox early?!

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Sasha
Posts: 3
Joined: Sun Feb 10, 2019 9:05 am

Stopping Folfox early?!

Postby Sasha » Sun Feb 10, 2019 9:13 am

Hi,

I don’t know if anyone can help or give at advice. I’m 24years old and was diagnosed with Familal Adentomys Polyposis 2 years ago. I have had my rectum and colon removed and they found a 7mm poly with cancer which spread to one of my lymph nodes.
I am now on 12 cycles of Folfox, I have just had #2 and already want to stop!
I know I won’t manage the full 12 cycles but I was just wondering if anyone knows anything about stopping at #6 or anything?

stu
Posts: 1048
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stopping Folfox early?!

Postby stu » Sun Feb 10, 2019 11:47 am

Hi ,
That sounds really rough . Have you spoken to your team yet ? My mum had a dose reduction which made her side effects much more manageable. She only ever did six at a time .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Sasha
Posts: 3
Joined: Sun Feb 10, 2019 9:05 am

Re: Stopping Folfox early?!

Postby Sasha » Sun Feb 10, 2019 1:54 pm

Hi Stu,

Thank you for replying. I spoke to my oncologist and they said that 12 cycles is the least I can do? I can’t move to tablet form because it will affect my stoma and cause other problems!

I spoke to my mum today and said I’ll probably try 6 cycles if I can because these side effects are dreadful! I’ve barely eaten anything for 4 days now!

Lee
Posts: 5873
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stopping Folfox early?!

Postby Lee » Sun Feb 10, 2019 2:13 pm

Agree with above comment. .

What issues "exactly" are you having with the chemo? Side effects, etc. Maybe we can help here.

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!

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Stopping Folfox early?!

Postby O Stoma Mia » Sun Feb 10, 2019 3:55 pm


Sasha
Posts: 3
Joined: Sun Feb 10, 2019 9:05 am

Re: Stopping Folfox early?!

Postby Sasha » Mon Feb 11, 2019 3:40 am

Thank you :)

My throat is very sore, can barely eat and drink. My feet are agony to walk on and I worry the more sessions I have the worse it will get! My mouth is very sore too!

The low mood/depression is awful too, having no quality of life and not being able to move out of bed or go to work!

I have read that 6 would be enough cycles but my oncologist doesn’t seem that understanding about it!

Thank you for replies

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Stopping Folfox early?!

Postby cbsmith » Mon Feb 11, 2019 6:50 am

I would do whatever the oncologists recommend you do. I also have FAP, the only one in my family so it is a muatation that caused it during birth. I didn’t find out until I was 35 years old and had my colon and recum removed. I was diagnosed at Stage 3B and did 12 rounds of Folfox. After that they found cancer in a para aortic lymph node and I started on Folfiri + Avastin for life. The cancer then spread to my lungs and after more genetic testing it was determined that there weren’t many types of chemo that would help the lung Mets. Those have since spread to my brain and I have had SRT radiation to help those spots for a few months.

My advice would be to do whatever the oncologist tells you. Chemo sucks but it does help and it may be the thing that prevents the cancer from moving someplace else. Between all the different chemos I’ve had over the years it’s more than 65 treatments.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

User avatar
ginabeewell
Posts: 149
Joined: Wed Oct 24, 2018 10:30 am

Re: Stopping Folfox early?!

Postby ginabeewell » Mon Feb 11, 2019 12:51 pm

I had mouth sores for my first and second round but then they never came back again. I've realized each round came with different side effects and I just have to be proactive about managing whatever comes.

I also had a chemo break after about five cycles. It wasn't planned, they had to do it because I had an infection and needed to heal. But I will say that my chemo was WAY easier once I restarted. I have GI issues, but almost none of the fatigue that plagued me my first five cycles. I think because the cancer was lessened by then, and my body had a chance to recover from the chemo. So a break halfway in is something you could ask about.

You can get though it!!
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!


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