IMPORTANT QUESTION ON FOLFOX!

lp1964
lp1964 Member Posts: 1,239 Member
edited July 2013 in Colorectal Cancer #1

Hi Everyone,

I just had a visit with my oncologist and everything is looking good.

He presented a plan to me that is different than what I was told at the beginning and what I heard from other patients here which was that you get all your Folfox treatment after surgery. He suggests that since I tolerated Xeloda a radiation so well and my blood levels look good why don't we get part of the Folfox treatment done before surgery which would be sometimes in September. He said it would be silly not to give me any treatment for two months and told me that if we stopped Folfox before the surgery it will not interfere with my healing capacity.

The questions that I forgot to ask him or came up since I talked with him:

Has any of you had treatment protocol of what he he suggested?

What is a "PICC" and where do they place it?

What is your experience with the pick and the pump?

What kind of side effects should I expect and what are the remedies? 

Your help and support is greatly appreciated?

Laz

Comments

  • LindaK.
    LindaK. Member Posts: 506 Member
    #2
    Different scenario for my husband

    Hi Laz, glad to hear you are doing well.  What surgery are you having in September?  My husband was admitted to the hospital in December due to a complete blockage in his colon, so his surgery was of the emergency nature and done before he was staged, although biopsy done during in-patient colonoscopy indicated a cancerous tumor.  He started Folfox about 6 weeks after surgery.  He had a power-port put into his upper chest about a week before his first Folfox treatment.  The power port is different from a PICC  line if that's what they are suggesting you get. 

    Folfox is different for every single person, but my husband did have the following side effects:  Severe constipation throughout, temporary neuropathy, extreme sensitivity to cold in his throat, hands and feet, and eventually ended up back in the hospital after 5 full Folfox treatments due to another blockage which thankfully cleared itself with belly rest (and the nasty NG tube again).  Oxaliplatin was cut out and he just finished the remaining 7 sessions of Leucovorin and 5FU.  He received all meds through his port including the pump hookup for 46 hours upon release. 

    I'm sure many of the folks on here who have gone through it themselves can give you some better information and advice.

    Good luck with your treatments and upcoming surgery.

    Linda

  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #3
    A few ideas...

    I have a Port and it is usually placed in the upper chest.  A Pick is normally placed in the arm.  The advantages of both are less risk of infection while on IV drugs.   The port does not hurt, if I move fast or abruptly I can then feel the port in me, else I really do not notice it.

     

    Splitting Chemo up is not uncommon.  Dr. Lenz sugested that to me.  It is easier to take the chemo and then have a break before starting up on chemo again. Chemo is very tough on my body.  Folfox was difficult on the last couple of teatments. I did Folfiri also and still very tough on me.

     

    Nausea, cold hands and feet, numbness hands and feet, Cold Drinks will be very uncomfortable.  

     

    I used ginger and green tea to help over come the nausea.  Queesey Drops worked well for a friend. (Walgreens and Target)   

    Baby wipes in all of the bathrooms is a must. Some sort of inc cream will be needed also. Lomotil helped a lot.

    I got Ove Gloves to get things in and out of the refridgertor and freezer.  Else my hands would feel like I was burning them.  The Ove Gloves also work great for getting things in and out of the oven.

     

    The nubness has lessened over time. I still have numb toes and little fingers.

     

    Taste will change.  The chemo will damage your taste for about 6 months.  I made everything a little spicey and salty at the end of chemo. lol

     

    Exercise!  Get out and walk.  This helped me a lot. Every time I was run down, I would still get the dog out for a walk. They loved it and I  never regretted getting out once I had done my walks. Sometimes I would tell myself I was just going around the block, and would end up walking miles.

     

    Best Always,  mike

     

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #4
    LindaK. said:

    Different scenario for my husband

    Hi Laz, glad to hear you are doing well.  What surgery are you having in September?  My husband was admitted to the hospital in December due to a complete blockage in his colon, so his surgery was of the emergency nature and done before he was staged, although biopsy done during in-patient colonoscopy indicated a cancerous tumor.  He started Folfox about 6 weeks after surgery.  He had a power-port put into his upper chest about a week before his first Folfox treatment.  The power port is different from a PICC  line if that's what they are suggesting you get. 

    Folfox is different for every single person, but my husband did have the following side effects:  Severe constipation throughout, temporary neuropathy, extreme sensitivity to cold in his throat, hands and feet, and eventually ended up back in the hospital after 5 full Folfox treatments due to another blockage which thankfully cleared itself with belly rest (and the nasty NG tube again).  Oxaliplatin was cut out and he just finished the remaining 7 sessions of Leucovorin and 5FU.  He received all meds through his port including the pump hookup for 46 hours upon release. 

    I'm sure many of the folks on here who have gone through it themselves can give you some better information and advice.

    Good luck with your treatments and upcoming surgery.

    Linda

    Dear Linda,

    In September they are gonna remove the rectum and the anal spincter so I'll get a permanent colostomy.

    Thank you for your help and the best of luck to you guys.

    Laz

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
    Treatment

    My radiation was the same time as the Xeloda, then surgery, waited six weeks, then started Folfox.  They also removed my rectum but made a new one out of the existing colon and then reconnected me 9 months later.  I'm not sure how many treatments you are going to have after surgery but my oncologist wanted me to wait at least six weeks after surgery to start treatment because surgery can take so much out of you and so can the treatments.  She wanted every chance of healing for me before starting something major again to my system.  It all depends on your doctor.  I've never dealt with a pic line and mine was the Power Port, and was so easy to access.  Maybe more people can chime in on the pic line.  Glad you are getting things rolling.  After my radiation and Xeloda they said that my tumor shrunk down to the size of the point of a ball point pen.  It's good that you are asking questions and if our answers still don't satisfy you, please ask your doctor again for clarification - that is what they are there for.

    Kim

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Treatment

    Everone is different after treatment and side effects are just something people deal with differently.  You might get sick to your tummy, loss of appetite, thinning hair, sensitivity to cold, fatigue, weird eye movements, including worsening of vision, voice will sound hoarse, constipation or diarrhea, sleeplessness especially if they add the steriods (it would be nothing for me not to sleep for 3 nights and then crash for days), possibility of sexual functions.  They don't mention anything about the sex part, but if you get radiation in the rectum, things could change.  It took me almost a year after to be able to make love again and it hurt like heck (it's a good thing my husband is so understanding) and since you're a man, I'm not sure what the radiation could do, but I've heard of it affecting men as well.  Possibility of bladder control (just in the short term), but it could happen.  Not everyone is affected the same so I'm not telling you this to alarm you but to make you aware of things that the doctor's don't always mention.  I'm sure others will give their experiences as well.

    Kim

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #7
    I have had 2 PICC lines and 2

    I have had 2 PICC lines and 2 ports. Most people I think like the port better. Personally I like the PICC line better. I hate getting stuck everytime for treatment with the port. With the PICC line they just connect the plumbing.

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #8
    Hi Laz...

    My husband had radiation and Folfox before surgery.  He has a port, on his upper chest, which has worked very well for him with no problems.  The biggest issue was neuropathy in his hands and feet.  His onc put him on the medication Neurotin (Gabapentin) which helped a bit.  Be careful with hot & cold drinks, best to let it become room temp before drinking.  

    Also, my husband has a permanent colostomy.  It gave him such a better quality of life.  

    All the best,

    Ellen

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