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Folfox Chemo begins

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

8 months after surgery to remove my husband's esophagus and pull his stomach up to make the new one, we learn the cancer is back. It is back at the connection site in the esophagus and is some lymph nodes on both sides of his neck, in the lining of his lungs and around his heart. We could not undersstand why in a matter of 72 hours he went from almost going back to work part time to now he can't catch his breath and is tired. Pulmonary doctor says he has scar tissue in the lungs from radiation so he can not do radiation again and he is too weak to have another surgery (his weight is 116). Tuesday (5/21) he started his first round of chemotherapy called Folfox and he will be re-scanned in 3 months to see if the check to see if the chemo is working or not.

Folfox is suppose to have some nasty side effects I read from sensativity to cold to the point if he drinks something cold it will feel like he is swallowing broken glass and grabbing things out of the frig will sting his hands so he will need to either wear gloves or have a pot holder available. He may also have burning sensations in his hands and feet, severe fatigue, nausea, vomiting, diarrhea or constipation just to name a few. We are being told it will take a few treatments for this all to set in. We know that the cancer will never be cured and we are being told it is not a matter of if the cancer will win it is a matter of when it will win. We will go through chemo until we realize he either can not physically handle it or the cancer is not responding. 

So disappointing that my husband was this close to getting back to some what of a life and now cancer has taken that away. I wonder when the chemo will do more harm than good and then wonder how the end will come for my husband. Any feedback on personal experiences would be appreciated.

Thank you

Christine 

CarolandJoe
Posts: 23
Joined: Feb 2013

So sorry to hear this latest news.  My heart and prayers go out to you and your husband.  My husband had his surgery in January and my greatest fear is exactly what you are writing about.  I wish you and your husband strength in your journey.

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

I wish you and your husband as well strength as you face the road ahead of you and keep the faith even if things get tough. It is a long road but stay strong. You can do it and my heart and prayers to you and your husband. 

callerid
Posts: 99
Joined: Dec 2012

Sorry to hear this news after all he's been through with the surgery. Know you have eveyones support on this site' 

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Thank you for your thoughts and it is great to know support is out there even when there are days that are not so good.

JKGulliver
Posts: 82
Joined: Apr 2013

Christine,

     My heart broke a little bit more as I read each line of your post.  My husband is also being treated with Folfox.  It has been around for some time and there is a lot of documentation about the side effects.  You should ask for anti-emedics to be administered with each treatment.  It is important to stay ahead of the nausea, which can last up to five days after the end of the infusion.  Folfox can also lead to horrible mouth sores.  We found that the old fashion warm water rinse of 1/4 tsp of salt plus 1/4 tsp of baking soda twice a day helped to heal them and prevent formation.  This is the most important thing.  Prevent formation.

     All the best to the two of you.

 

 

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Thanks for your post and we are on top of the nausea. We have Compazine, Lorazapam and Zolfran. After Mike gets disconnected on Thursdays, we start that night with Zolfran, take Zolfran again in the am and then switch between Zolfran and Compazine until Saturday as so far it went well. Then again this is only our first treatment. They do give him anti nausea meds before chemo and then they give him another kind of anti nausea med that lasts up to 96 hours. 

The first treatment really knocked Mike out that he slept a lot and said when he got up he felt as though he weighed 500 pounds. We are hoping that as the days go by he will feel better but it is truly one day at a time. Thanks for the tip on the mouth rinse and I have written it down so if they do happen, I have your mixture at hand to use.

Thanks again and prayers to you and your husband. Stay strong! 

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