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Your opinion please,

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

How many rounds of FOLFOX do you think are needed to see if it's working on CAT or PET I'm not monitoring my CEA this time as I don't want to have a nightmare every 15 days but we agree with doc to make a PET after my 3 th shot, is not that too early? Did some body experience growing with 3 or 4 rounds and then after more shots a shrinkage? or if it does not work from the first day it means is not working?.
Any experience on that? All your comments will be highly appreciated !

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Greetings Pepecn

I'm brand new on here today... have stage 4 colon cancer that's all over the liver.

Been on FU5 along with Erbitux for 4 full treatements (every other week for FU5 with a pump for 2 days and every week of Erbitux.

On Friday, 8 weeks after starting treatments they did a CT scan and for the first time in my life i am proud of shrinkage.

The report said:

1. no NEW cancer and no new or additional growth.
2. the spots on the liver (that were biopsied as Colon Cancer) reduced from 7.5x4.5 down to 4.5x2.5.

I am not sure if i answered your question, but hopefully this gives additional hope.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

First of all welcome to the board,hope you can find here hope ,friendliness and lots of wisdom suggestions that will help you in any question you may need. Once that said thank you for your soon replay, and congratulations for the soonest response of your treatment, hope it continues as until now and you get NED very soon. We will be here sending you our best vibes and prayers.
Hugs!

jasminsaba
Posts: 157
Joined: Jul 2011

mom was scanned after her 6th treatment and again after her 12th treatment ... she is now being monitored with scans every three months.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Jasmine?Hugs!

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

thanks for your note... okay,.... NED.

what's it mean?

Obviously, it has something to do with remission or cancer free... but...

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hope you can enjoy it very soon!

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

thank you!!!

NED...hope and pray to be there one day!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I did Folfox on my first strand of chemo in 2008/9 and it knocked it down for what I thought was completely but instead it showed up again 2 years later. Folfox was used on me to mop up anything that was supposedly left microscopically. It did kick its butt but still some got away and I recurred but it will do a great job...The nausea and neuropathy was the worse part about it for me. I still have the 3 middle toes on both feet numb from side effects from Oxaliplatin...Keep your Oncologist aware of how you feel at all times and don't be afraid to stop if its to hard on you.....best wishes.......Clift

toddi1973's picture
toddi1973
Posts: 41
Joined: Oct 2011

Hi Buzzard,

have you tried using Glutamine supplements against the Neuropathy ? I know that we all respond different and I spoke with my Onc before I tried it, but there are a couple of interesting studies on the Web: http://www.mskcc.org/cancer-care/herb/glutamine

It did miracles for me. I take 3 grams capsules, morning , noon and evening. From one round to the next, the pain in my hands just stopped. I still have the cold sensitivity, but no more of the 'real' neuropathy that had started.

Best health,

Toddi

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

If I understand your question correctly, you are asking about getting a scan after your 3rd treatment? If your treatments are every other week, that would only be after 6 weeks of treatment. Personally, I think it is a bit early but that is really up to your doc. I would think half way through, or after 6 of the 12 treatments, would be about right. That would give the chemo time to do its job. If memory serves George did not get scanned until he was almost done with the initial 12 treatments or about 5/6 months of treatment. His CEA was very reliable for him and that was done monthly. CEA for George kept going down and down and down and that along with blood monitoring told us the chemo was working.

Hope this helps.

Hugs - Tina

xbarjoe's picture
xbarjoe
Posts: 7
Joined: Dec 2010

Hi.
I had CTs after every 4th round of chemo (FOLFOX w/ Avastin). I had shrinkage no growth after the 4th round and shrinkage after the 8th.
Also, CTs are recommended to gauge tumor shrinkage, PET shouldn't be used after the initial diagnosis.

Good luck, keep fighting, and God bless,
Ron

gfpiv
Posts: 60
Joined: Apr 2010

Pepe,

You're right about ignoring the CEA; when changing treatments it can go either up or down if the chemo is working.

I've always done CT scans every 3 months (i.e. 6 treatments). 3 rounds seems maybe a little early for a CT, but it's likely you could get a good feel for working or not by then. Personally I might go with 3 or 4 rounds if I were concerned it might not work, and wanted to go on something else asap thereafter.

I've never personally heard of someone have GROWTH show up on a CT/PET with a treatment, and then later have shrinkage with the very same treatment. Although on rare occasions you may see STABLE disease (i.e. no change) at the first CT/PET, and then later see minor shrinkage.

Please be vocal with your onc about any neuropathy (i.e. tingly feelings) you may be feeling in your hands and feet with the Oxaliplatin...especially when you get up past round 6 or so. If the neuropathy lasts almost the entire two weeks between treatments, they should probably either reduce or stop the Oxaliplatin, since neuropathy often gets worse for a couple months following treatment, and in some cases can be permanent. There are a number of studies showing that most of the benefit/shrinkage from Oxaliplatin has been delivered after round 8 or 10 anyway, so beyond that many people (me included) see diminishing returns for additional shrinkage vs. risk of ongoing neuropathy in rounds 10+.

Either way, best of luck.
-Chip

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

appreciated , Hugs.
" Chip " CT. aside what I try to mean is : is it possible that chemo does not start to work until 2nd or 3th round? In that case would be some growth until it starts to Work let's say 2/3 rounds.Or if it does work it must be since the first Round?.
Thank you and sorry for my English .
Pepe.
Barcelona.

gfpiv
Posts: 60
Joined: Apr 2010

Good question Pepe. Although I've never heard of first growth and then shrinkage on the same protocol, that doesn't mean it's not possible. As mentioned though, most people don't get a follow-up CT/PET for at least 3 months (i.e. 6 rounds), so who knows what is happening before then. Generally at 3 months, I imagine most oncs would change up your protocol if they saw any sort of progression from prior scan.

P.S. I've heard that in some cases oncs decide to continue with Avastin or 5-FU/Xeloda even after progresssion, but I think that in most cases they'll stop Oxaliplatin and Cetuximab if/when they see progression. As for Irinotecan, some say that adding Cetuximab can sometimes "re-sensitize" the cancer to Irinotecan after it has initially stopped responding.

In any case, I hope that it's a moot point for you - hope that the FOLFOX works great from Day 1!

sasjourney
Posts: 395
Joined: Jul 2010

I have a scan about every 3 months to give the chemo time to work. I have CEA checked once a month. I know CEA can be elevated when cancer cells are dying off, too.

Hope you are doing well, Pepe.

Hugs,
Sara

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

My Stage IV crc wife recently had CT after 4th chemo. she is due for 6th chemo in a few days. not sure when another scan will be order. ONC plans on full PET/CT after 12th.

anyhow, we had a wrinkle in that the first radiologist reported no significant changes in liver tumors and added that there may be lung tumors. ONC sent all images to her prefered radiologist and got a totally different read, which was significant shrinkage and no evidence in lungs. this tracked with CEA coming down from 1800 to 300. I was a little amazed at difference in reads. The second radiologist wrote a better report IMO as he included starting and current dimension of the two major liver tumors whereas the first did not include dimensions. I am still a little concerned about the disparity which was never been resolved even though ONC spoke to both radiologists to try to understand how they could arrive at such different conclusions.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Don't you can advance the PET? it would clarify about lungs !
Hugs!

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

we are meeting with Onc Tuesday to go over everything including this. I was tending to a third radiologist. but you are right, PET-CT is would give more information and Onc already said she might recommend. I need to push this...

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear pepe,

this is not mainstream yet it maybe oneday, but i read somewhere they propose using ctc's as a way of indicating whats going on with tumour chemo response before pet and ct. its not much use in practise now and i know thats what you seek.

all i can offer is first principles chemo, that shrink = more killed than grew.
growth means more grew than died.

now assuming constant folfox volume every fortnight and you are not doing other cytotoxic therapies then if you have growth obviously the tumour is having enough support from your own body to grow and i guess for that growth to be triggered. our biology is so complex, noone knows precisely your triggers.

my focus this lent is prayer and meditation as well as some well choosen herbs and spices and potions. i will remember you in my prayers. at this point your onc is the main advisor. i know the peripheral neuropathy stuff is bad, but i would put up with it for a result ie shrinkage. lots has been discussed here about strategies to mitagate these specific side effects. its 10 months since i finsihed 12 full cycles and my neuropathy is almost gone completlely. a small mircacle in itself.

hugs,
Pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

of course we all want shrinkage for you,
but even stable is better than nothing and i guess it depends on how the folfox is
effecting the rest of your biology.

how long is a piece of string.

i guess our experiences are of interest but whats really important is your tumour, your biology and how its responding ( hopefully dieing )

specifically its rate of growth and then the rate of shrinkage.

has your onc mapped out any plans or possibilities in the conventional treatments for you ?

I will pray for shrinkage at mass tomorrow for you, and for us all.

hugs,
pete

ps its fun being vegan! only joking.

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