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Folfox6 and Side Effects

HanksMom's picture
HanksMom
Posts: 5
Joined: Jul 2012

Good morning - Just a brief summary....my husband was diagnosed with Rectal Cancer on May 8, 2012 there were no signs of it in his lungs or liver although it was all the way thru the wall of the rectum, etc.  He had radiation with Xeloda for 6 weeks and basically had no side effects...he got a little tired.  End of August was his surgery to remove the remaining tumor and cancerous tissue.  We had been told that the tumor was excessively low and they weren't sure they could save any of the rectum but my husband told his Dr that he wanted him to try everything possible to avoid a permanent colostomy.  End result of the surgery was entire rectum removed and colon was attached to anal area.  After 10 days we went home to Maine (surgery was at Memorial Sloan).  His pain was incredible.....it never lessened up and finally after 3 wks someone listened to us and his Dr in Maine and his Dr in NY got together and ordered a CT scan to see what was happening.  Long story short....a large pocket had formed down near where the colon was attached to the anal area.  It was very infected.  We went back to NY for supposedly 3 days and we were there 31...17 of which he was in the hospital.  The only way to try and heal this pocket was with what they call an Endo-Sponge.  They are used all over Europe and they are starting to gain popularity here.  It worked and even though he still has the pocket it is much smaller and they will deal with completely closing it up after his chemo is finished.  He was supposed to start chemo in Sept but because of the pocket issue he just started on Monday.  We go in today to get it disconnected and do it all again in 2 wks.  So after all of this here are my questions: 1) Has anyone else had Xeloda and then chemo infusions and found any correlation in the side effects? 2) We were really expecting an intolerance to cold and he has yet to experience it yet....it's been warm for Maine so far this week...around 30 during the day so it hasn't been excessively cold but he was outside yesterday and nothing.  3) Has anyone else on here had their entire rectum removed and been successful in not having to have a permanent colostomy.

Thanks everyone - I appreciate any comments, thoughts, etc!

Julie

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I had minimal side effects from FOLFOX (+ Avastin).  They consisted of minor loose stool from the 5FU, which was easily controlled by occasional Immodium use, and cold sensitivity due to the oxaliplatin.  I can alsmost guarantee you that your husband will eventually get some cold sensitivity due to the oxaliplatin.  Mine was mild at first, but kicked in by about the 3rd treatment.  It was more mild than many people report, and went away within a week or so.  I did 12tx of FOLFOX (+ 10 Avastin), and currently have neuropathy in both feet and a little bit in the tips of my fingers.  I'm off oxaliplatin for now to allow the neurpoathy to get better.

 

Tedd

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 473
Joined: May 2012

I was diagnosed a month before your husband 4/11/2012. Stage IV rectal cancer with 1 met to liver. I had chemoradiation for 5 weeks then a 4 week wait, then surgery in June. I did not get a colonist my either. I waited 4 more weeks and started chemo, Folfox, and finished 12 treatments Dec 17th. I did not get the cold sensation right away, just couldn't drink cold drinks for a few days. The cold hands/feet didn't start until half way through treatment. The neuropathy didn't start until the 10th treatment, and I still have tingling in my finger tips constantly. Sounds like your husband has been through a lot already. Everyone is different with the side effects. Good luck with treatment.
Sandy :)

Coppercent
Posts: 145
Joined: Jan 2012

I also have rectal cancer. I had the chemo/radiation pre-surgery with Xeloda and had no side effects. I got my radiation treatments at the end of the day so I did not miss any work.  I waited 8 weeks then had my surgery. When they did my LAR they removed my whole rectum and did a straight connect and gave me a temporary ilieostomy.  Due to chemo and my work schedule I did not get it reversed for 11 months. I only did 8 treatments of Folfox/Xelox due to another health issue that popped up. I had 6 Folfox and 2 Xelox.  I did not have cold feeling in my hands or feet until after several treatments. Ending the oxy after only 8 treatments kept me from having permanent neuropathy although everyone is different.  Folfox was rough on my blood counts and I ended up taking Neulasta shots. The shots caused some fatigue issues.  Keep in mind everyone is a little different. I ended my treatments in June so I am back to my old self.  The only reminder I have is my port and my scars. My port doesn't bother me and I am not ready to jinx myself and have it removed.  Good luck on your journey!  I have a 3 month check up this Friday. 

hippiechicks's picture
hippiechicks
Posts: 374
Joined: Sep 2012

Hi Julie,

I also had Folfox and began after the first treatment having strange feelings in my throat.  I later found out it was the sensitivity to the cold when I was drinking room temp. drinks! From that day on I switched to only warm drinks and foods.  I could not go outside in the cold or walk on the floor with only socks...I was extremely sensitive to the oxali and had several dose reductions and skipped the last one all together.  Everyone is different as they say...but for me it did strange things to my vision, emotions, nerves and intollerence to cold anything.  I did have to have the neulasta shots bi-weekly as well as my white blood count tanked after dose one.  I did not have Xeloda. 

I had my entire colon removed and was hoping for a reversal, however, things did not go as planned and so my illiostomy remains.  I am fine with it, and personally do not want to chance or think of risking another surgery to attempt it at a later date.

Wishing you the best of luck and hope this was some help to you!

 

HanksMom's picture
HanksMom
Posts: 5
Joined: Jul 2012

Thanks everyone for the responses.  We are at day 10 and he is now having incredible pain in his upper left hamstring around the side of his upper leg and in the upper thigh....he was doing alot of work outside stacking wood, etc so we don't know if he did something to pull a muscle or not but I tend to think that it is from the chemo....anyone have those kind of side effects?

Julie

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I had some calf cramping, but it usually kicked in 2-3 days after my infusion.  Taking magnesium and calcium a few days before and after chemo really helped with the muscle cramps.

 

Tedd

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