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5fu ?

worriedson714
Posts: 63
Joined: Dec 2019

So my dad has stage 3 rectal cancer and is awaiting his second surgery to get the rest of it . At the appointment today the surgeon told us they needed to do another MRI . To make sure they could remove the rest of my dad's tumor cause it's behind the prostate and close to the intestins and urethra and maybe some blood vessels and bone . They said if they can't do the surgery they recommand chemo . But they aren't sure what chemo and didn't seem to have alot of hope for chemo . Because my dad had chemo 4 rounds of 5fu and 1 of oxaliplatian that they say didn't work . 

 

So my question is has anyone ever had 5fu not work then another drug did for rectal cancer? The surgeon said 5fu is the standard so if that didn't work they aren't sure about others . Also is it normal the first cycle was just 5fu ? everything I am reading makes it sound like oxilplation should have been part of it from the start. 

 

 

Tueffel
Posts: 93
Joined: Feb 2020

Hey

I am sad to hear that you are struggling. It is not nice to hear that when chemo doesnt work or if doctors dont have hope. 

5FU with oxaliplatin and folic acid is under the name FOLFOX standard therapy. That is what I read especially if you have infusions and dont take pills. I know sometimes cancer cells dont respond. I heard of it especially if there is a relapse that the newfound cells might not respond anymore. Also some cell mutations of the cancer might differ the chemo response if that is also for 5FU I dont know. I just read about some mutations that might change the response. Was your dad ever tested for RAS, BRAF, MSI or MMR? These mutations if present can lower the response to chemo but I dont know if that is specific for 5FU. 

I think that 4 chemos are not enough to see enough. The oncologist said to my dad that his response to the chemo is rare after only 4 chemos. Most people need more chemos to have a similar response. So maybe you dad had not enough chemos? Maybe he needed more? Also the effects of 5FU disappears after 8-12 weeks after the last chemo. Why did your dad only had one time oxaliplatin? 

Btw the MRI is good. It will take more time than a CT and might be challenging (you need to be still for some time, sometimes hold your breath) but a MRI is more precise than a CT. I knew once the millimeters on how precise it is but unnecessary medical information I dont remember. 

I hope the best for your dad!

worriedson714
Posts: 63
Joined: Dec 2019

No one has ever mentioned anything about mutations so he has never been tested for RAS BRAF MS OR MMR and we have been to three different places . University of michigan and our local hospitals I need to ask about that cause everyone seems clueless to why the chemo didn't work . That's what I thought I mean it was four cycles of chemo so it lasted a few months but still . The oxaliplation caused neuropathy so the oncologist stopped it which I didn't really agree with cause it wasn't bad neuropathy he could walk and everything . 

 

The thing that worries me about the MRI is my dad can't have the dye he had a bad reaction so will it even show anything ? Thanks for the info though I need to ask about the mutations for sure cause thats never even been talked about . Like you said it sucks to hear chemo didn't work cause now I am left with what if the rumor is not removeable it would be hard . 

SnapDragon2's picture
SnapDragon2
Posts: 304
Joined: Nov 2019

Genetic testing is standard.  I would check with original doc that did biopsy or first surgeon.  You all need to have copies of all scans and all reports to keep in a file at home.  It could be very important down the road and better to get it as you go along with treatment, tests, scans, ect.  As far as chemo goes, it doesn't work for everyone unfortunately, this is where additives might synergize it (appt with an ND).  If you find out he is MSI High he will have more options with immunotherapy.  Even now with MSS they are seeing if tumor burden is something like over 9 then imunnotherapy could work also.

 

Annabelle41415's picture
Annabelle41415
Posts: 6510
Joined: Feb 2009

That is usually the standard protocol for that type of cancer, but not everyone responds to it.  I'm sorry your father didn't improve after receiving the treatment.  I'm not sure what other treatment they would use because that was the option that was used on me and it was effective.  There are others on here that have tried other chemos.  Like Tueffel has said there are mutations out there that just don't work with certain treatments and your father should be tested for them because it is a waste for him to take something when the mutation exists.  My doctor never just gave up on 4 treatments (unless it was giving your father problems).  Hoping that he can get some answers that will help.  Sorry this has been so hard on all of you.  You and your father have been through so much trying to find the right answer and direction.

Kim

worriedson714
Posts: 63
Joined: Dec 2019

5 fu my dad had hardly any side effects during the first cyle which was only 5 fu . Then 2nd cycle they added oxaliplatain to it and he got neuropathy . Tingling and pain in hands and feet and the doc cut it off when one dose left in the cycle . I think my dad could have handled more and should have had more my dad was willing to do more but they said no . Now these second opinion docs are saying my dad's chemo didn't work and I think it may have just not been done right or he has a mutation . Thank you for your kind words you guys on here help so much . 

 

@snapdragon where does one find a ND doctor ? 

worriedson714
Posts: 63
Joined: Dec 2019

We have all the scans MRI's reports nothing has ever been mentioned about mutations when we ask why it didn't work three different places say " we don't know " . Which is odd I'm for sure going to push them to test for mutations because all three places are missing that . 

SnapDragon2's picture
SnapDragon2
Posts: 304
Joined: Nov 2019

Good for you, MSS, MSI, Lynch and Kras/Braf are standard and needs to be done to decide on treatment beforehand.  If you look up Naturopathic Doctors on google it will bring up many.  I am consulting with Lexington Natural Health Center (they are highly recommended).  I believe Life Extension also does consults that are free and also highly recommended.

zx10guy
Posts: 266
Joined: Dec 2013

As has been stated by Snapdragon, talk to your doctors about genetic testing of the tumor.  If they have not done it, tell them to do it now.  All tumors removed are stored/banked.  So they can go back and have a sample taken out from the original tumor to get tested.  The discussions about mutations is important in the course of treatment as it will determine the eligibility of second line treatments such as Erbitux, Vectibix, etc.  And as has been mentioned, MSI/MSS status will also determine the availability of immunotherapy treatments such as Lonsurf.

Your doctors are correct in that 5FU is the mainline drug for treating CRC.  What many people don't know is this drug has been around since around the 50's.  It works by scrambling DNA replication in rapidly replicating cells which cancer cells are one of htem.  Unfortunately, cells in your GI tract are also of this type hence why the side effects.  Not everyone responds to 5FU.  A response is typically categorized as shrinkage or stability of the tumor depending on the person's situation.  Having a complete pathological response is not common where the drug totally erradicates all visible traces of the tumor.

SnapDragon2's picture
SnapDragon2
Posts: 304
Joined: Nov 2019

One other note:  DPD testing.  I would ask for it.

worriedson714
Posts: 63
Joined: Dec 2019

@Snapdragon thanks for the help will do 

 

Also idk if anyone can help with this is it normal the first cycle of my dad's chemo was just 5fu ? Then added oxilplation on the next cycle . Just trying to figure out what happened with the chemo if it was something we could fix or if it's just bad luck . 

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

On the 5FU Oxi issues - I think it was all answered except maybe the last thing you asked - so apologies for any redundancy. Also I see Snapdragon discussed the mutations.  So I apologize there also.  :) 

Back when I started on FOLFOX (5FU and Oxaliplatin combination) the course of treatment was 12 rounds (in 2015).  At that time places outside the U.S., particularly Japan, were using 6 cycles.  There were stuides at the time going on in the U.S. and my oncologist thought we would be on 6 cycles at some point.  (He is one of the big guns at MSK and also teaches this at Cornell Medical school.)  To date, still 12.

He also said he would usually not have more than 10 of the 12 treatments with Oxaliplatin, with hoping to get a minimum of 8 Oxaliplatin in.  He also would NOT use it the first treatment.  His reasoning was that he wanted to see if there was any adverse reaction to the 5FU itself.  So I did not have it the first round.  Then I went 8 with it.  I had the neuropathy start a couple of treatments in, but it would resolve between cycles.  It did not resolve after the 8th with it before I was going to have the 9th.  He said I was done.  That the effects were not gradual and if it did not resolve, it could be like falling off a cliff (exponential vs linear thing).  He also capped the Oxaliplatin at 10 in general because from the studies he looked at and followed, that incremental benefit in stopping/reducing cancer at the point was outweighed by the risks of Oxaliplatin.

(I eventually went on FOLFORI with Avastin a couple of years later and now Lonsurf, as mentioned in the other thread you saw.)

In terms of testing, MSK and Yale do this automatically.  Different places may have different things, but KRAS, MSI or MSS (MMicrosatellite Instable or Microsatellite Stable) BRAF and others are very common.  I am not an expert on all these things, but KRAS and the MSI/MSS are run of the mill in general regarding FOLFOX and FOLFORI - I do not recall there being a correlation with those items (KRAS, MSS/MSI) with FOLFOX and FOLFORI.  Again, I did not go deeply into that aspect when I went through those treatments.  KRAS Mutation means anti EGFR drugs will not work work.  These are the drugs that end in "ab" like Cetuximab.  An article on this is here  

Immunotherapy does not work on MSS.  The Keytrudas and the rest.  Please note though I know it has been studied more in terms of finding drugs or a combination that will unlock immunotherapy when there is MSS.  When my cancer came back for the third time in three years in 2017 I went through this with my doctors and also when I got a second opinion (always consider getting a second opinion)

BRAF positive lends itself for certain targeted therapies.  There are countless other things to look at. MSK's test covers about 450 different genes.  Yale's testing (where I will go for a trial if needed) was looking at other things and/or had access to studies which they were looking for things.  Such as HER-2 and some other items. Keep in mind that despite the expertise of any doctor or facility, it is difficult for them to know every trial going on.  My doctors all are good in being straightforward.  When MSK did not have something for me, they told me to check other places (that is how I got to Yale).  

Also note I am not a doctor and very easily could have missed something or stated something a bit off, so don't think your doctor missed something or did something wrong.  I just wanted to give a general road map through all of this that I hope can help a bit.

 

worriedson714
Posts: 63
Joined: Dec 2019

This helps alot cause my dad is now on his 3rd opinion of doctors and none of even mentioned genitic mutations . They all simply tell me they don't know why the 5fu and oxplation did not work . Which is kind of unacceptable to me . Given the fact he went threw chemo and they kept him on it why didn't they know it wasn't working ? That's the question I want them to answer none will of course . 

 

He only had not even one whole treatment of oxplation cause he got neuropathy and they stop it . Which I didn't like cause my dad had pain and tingling but he could still get around good and was willing to keep going . Not to mention he has another disease called NF which causes pain in legs and stuff which could have been some of it . And he didn't have no where near 12 cycles of 5 fu he had 4 only of that which is seeming like not enough .

 

So I kind of just feel like they screwed up and didn't give him enough chemo and now if they second surgery isn't a opinion . There acting like chemo isn't a opinion cause it didn't work when what if he just didn't get enough you know ? So next time I am planning alot of questions for the doctors and what happened with chemo.

Real Tar Heel
Posts: 80
Joined: Nov 2019

I guess doctors have different methods but my doc kept me on Oxy long after I complained of the neuropathy symptoms. They let it go until it got significantly worse. I had to ask them not to use it at the end (last two treatments). She agreed because of my age (relatively young), I need my hands for work and feet for life, lol. I think perhaps they should have let it continue.

In Japan, 6 weeks is standard adjuvant therapy with FOLFOX, not 12 like here in the US. They have a similar success rate. So there's that.

I asked my onc if she would consider another round of chemo if there is a recurrence, she said maybe. A recurrence is a sign that the chemo didn't work. She might try FOLFRI (different additive than Oxy) but is not sure.

Make sure you ask about the mutations. They could give you a number of options, especially when it comes to trials. They should test for KRAS, BRAF, MSS/MSI

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