Folfox after treatment #3 just need to vent


I just had my 3rd treatment last Wednesday. The side affects haven't been so bad this time, maybe because I skipped a week and had extra up time due to my beautiful grandson being born on chemo day !! I wasn't going to miss that for infusion for anything in the world !!!.  Treatment #2 was aweful. Had chest pains so bad the first 2 days after treatment that I actually thought I might wake up the next day. I prayed for God to take of my family if I died in my sleep.. Praise God, I woke up and it was gone and didn't happen after #3.. There is a lot of stress at home. Unfortunately my daughter and her boyfriend, and now baby live with me, which isn't the stresser, that's great, but after my shocking  diangosois  of colon cancer, we all had the move in with my ex husband !! Not my daughters father.. We had actually only been divorced for 6 months.. Had my life back on track and the next thing I know I'm in the er with what I think is major constipation . The er sent me home 2 times before finally admitting me, only because they finally did a ct scan with contrast. A surgeon came to my room and said you have colon cancer and you are completely blocked. Told me its Stage 2 or 3. Wouldn't know til he opened me up. I didn't have insurance, I'm a hairstylist, don't get paid if you're not working etc... I had a pregnant  19 year old daughter and a 14 teen year old ..I was so happy to be divorced too !! Lol... My landlord decided not to renew my lease, ( while I'm in the hospital ).. Said it wasn't personal , just business . I'm assuming because he knew I wasn't going to be working I guess.

I was diangosed with stage II a. Took out 6 feet , tested 14 lymph nodes and all negative !! I am truly blessed !! I have a 10 in ugly zipper scar.. That's fine with me !! Lol.. Due to the type of tumor, it was fast growing and made me high risk. I'm 44 and no cancer in my family.. So full on Folfox for 12 treatments. we all live my my not so sympathic ex.  He's the redneck, know it all type.. I get me wrong i am very thankful we have a roof over our heads ,but trust me it comes with strings attached. He wants attention all the time. If I'm feeling bad, so is he.. I'm so stressed out with his neediness.. My 9 day old grandson is less needy than he is. it isn't bad all the time, just when he's home. Lol.. my daughters and I are always so very thankful to him and we all are faking it til we make it.. And the most important thing to me right now is having my girls and Lil Mini Coop. Cooper Wayne ..... 8lb 12 oz of pure love !! God always has a silver lining.. Mine is golden !!! I know I'm ranting !! Thank you for whoever is listening... 

As far as side effects, the first 2 treatments took a toll on me the first few days, fatigue, fluish feeling, nothing cold, first bite jaw pain, sleeplessness, which helps with the long nights with the baby.. ( thus, silver lining) no neuropathy til this last time and this time coils sensitivity. But, I slept the first 2 days and I have felt great. I guess the extra week helped !! Oh, hair loss!! That's been a biggie !! I think I'm gonna be the exception that loses all my hair.. It's coming out by the every time. It's all over my house, car.... I wear hats all the time.. I'm hoping it'll stop and just be very thin, but idk at the rate it's falling out . I had thin hair in the first place.. Last night, which is now morning.... I was so cold that try bones hurt !! I was layered in blankets, had on socks and gloves. Also, so thirsty and a horrible headache at the same time.. Is that normal ?? Is that due to a low blood count ? That started at 4isham, so once I calmed down and warmed up I relieved my daughter and have been holding my precious grandson ever since.. He's the best drug ever !! And my daughters are great.. So is the ex at times, he does provide for us during my unemployment. I can't handle the cold hand sensitivity, and I can't ahold wet hair to cut. My hands go numb at times too,so it'd be aweful to drop my shears or clippers.. Thats just a bad haircut waiting to happen ! LLol thanks for listening. God bless all of you in you journey !!! There is power in numbers ! Much Love,



  • LindaK.
    LindaK. Member Posts: 506 Member
    Hang in there

    Wow, you sure have a lot to deal with besides cancer.  My husband was diagnosed with stage 2 also in December, 2012.  2 feet of his colon removed, successful resection.  12 Folfox treatments started in January.  He tolerated it pretty well until treatment #5, when he ended up back in the hospital with a blockage, caused by the cumulative constipation and possibly scar tissue pressing on his bowels.  The blockage cleared itself but the nasty ng tube was necessary again to give the belly rest.  They decided no more oxaliplatin, just 5FU.  He has had 2 treatments of just the 5FU with the 46 hour pump.  He takes stool softeners, metamucil and senna laxatives to keep ahead of any constipation.  The side effects of just 5Fu have been more tolerable than the 5FU with oxaliplatin - no neuropathy or cold super sensitivity.  He has been feeling very tired and super achey joints, no nausea or loss of appetite.  He has not had hair loss, just a little thinning.

    Your grandson sounds like the best kind of medicine to help you through.  Do you have your own room at your ex's?  When he becomes needy, I would just retreat to your own space and do your own thing - meditation, music, reading, etc. or try to get outside for some fresh air.  My husband was needy before his diagnosis and I've feared I've created a monster.  He is still angry about his diagnosis and all I am doing is trying to get him through it, spending all my time off from work with him during treatments, hospitalizations, appointments.  It's tough on me because I'm the one who gets all the anger.  I'm trying not to take it personally, but I'm exhausted, too, since I work full time (he doesn't work) and I still have to take care of everything else.  If I have a few hours out with a friend or a hair appt. when I get home, he acts like "now you have to do what I want" so it's not worth the hassle of getting away for a few hours.  I can't seem to make him happy and I get all the remarks about cleaning or shopping when he doesn't like it if I stop at the grocery store on my way home from work.  I hate to complain, but I do think it's good for all of us, cancer patients and caregivers, to let it out somewhere.  Our son in law is dealing with Stage 4 lung cancer mets to his bones and brain, it's tough to have so much cancer around.  I just have to stay positive for all of us!

    Good luck with your Folfox treatments.  Just keep hydrated and on top of any diarrhea or constipation.  Our oncology center is great about taking calls for anything and everything after treatments.  This message board is also great for information and venting - whatever you need to do to get through it.

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    WOW, so sorry. It's bad enough being diagnosed with cancer. Folfox is a tough one, I just finished in December 2012, completed all 12 treatments. The cold sensitivity was the worst for me, it got worse as treatments continued. Luckily that will go away after treatments, but I didn't have bad neuropathy during treatment and now have constant tingling in feet and finger tips. I see you are a hairdresser and the neuropathy would be bad for you for cutting hair. I'm so glad you have your grandson to help put that smile on your face.
    Sandy :)
    Stage IV
  • maglets
    maglets Member Posts: 2,576 Member

    wow Lucinda....I like your style girl!  You just got handed a great big plate of sh-t and you are doing well.  So so sorry for all that you are going through. Take it from an old girl and a stage IV survivor .....3 times just keep going and doing what you are doing.  I know you can get through this folfox.....the oxy is one ugly little drug....It is so easy to say but try not to worry too far ahead....just dealing with the oxy is enough for now.  Talk to your doc if you think the hand neuropathy is too intense.  Your drug dose can be reduced.....all your side effects sound just as they should be....I think you will feel differently with every dose.

    Lots of us here who are more than happy to listen.....there is power in numbers.  Hope you will stay in touch....ask anything! you like.

    Best love and a hug, maggie

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    It's good to vent

    Really, its good to vent, to cry, to scream, but then you get over it and continue with the battle.

    I read your post to my husband who said you're ex should 'Man up'.  Men are known for their weakness (though being on this message board, and reading about their fight with Cancer, has changed my mind somewhat). 

    You need taking care of, but it sounds like you could become easily overwhelmed with the amount of people in one house.  With me, the more chemo sessions I do, the worse I feel. 

    Keep on posting, we need you here and I think you will need us. 

    On an aside, my hair, which was thick to start with, is now very thin. I thought I wouldn't mind it falling out, but I have actually found it quite distressing. I was a hairdresser in my younger days. 

    Keep your chin up, and love that little grandson of yours.


  • AnnLouise
    AnnLouise Member Posts: 276 Member
    I will always listen to venting, Lucinda......

    What a beautiful gift in the midst of an overwhelming situation granddaughter was born 8 weeks before my diagnosis and today she said " shopping grandma?" . I look at that beautiful face and know what I am fighting for. You seem to have a good attitude and you have been handed a lot Thinking of you and your family...~Ann