Cisplatin and 5FU as preventive doses

Our plan was to do 3 cycles of Cisplatin and 5FU after the 35 IMRT radiation and 2 Cisplatin doses. It wasn't meant to be. My husband became extremely neutropenic even with the shot of Neulasta that was supposed to boost up his white blood cell count. Then he had something called recall mucositis which was every bit as bad as the original mucositis. Both his oncologist and I said enough is enough at that point. Statistically the extra Cisplatin+5FU wasn't worth the risk of more neutropenia and side effects for us. My husband is now 1 year out from treatment with no evidence of disease.

It's a very personal decision. You feel like you want to wring every advantage out of the treatment you can. You might even feel like you are not finishing the race. It was an easy decision for me to say STOP, but a much harder one for my husband. In the end, his doctors are the ones who helped him see the risk/reward ratio and decide not to pursue any more adjuvant chemo.

Best of luck with your decision.

Barbara

Tryinghard, 

Is this adjustvant? I feel for your husband's pain. I'm 32 years old and it was 5FU + Cisplatin was pretty unbearable, hard to even get water down. I recalled starting at a cup for 30 minutes trying to get it down for hydration. I did 2 rounds of adjuvant, and Cisplatin only for the 3rd round. The 3rd round was after a very long conversation and debate with the oncologists who got me pursuaded in the end. 

Permanent side effects: I had none except neuropathy. My neuropathy began after the adjuvant phases (the primary phases I had minimal neuropathy). Today, I still feel tingly sensations on my feet and hands, particularly when it's chilly or hot. I do not have any other side effects. 

Looking back: With a clear mind now, I'm somewhat glad I did it, although I will not know if it made a difference. The permanent neuropathy damage, and some tinnitus is probably something I can live with as I haven't had other side effects. One thing to be informed of: Jury is still out there for adjuvant chemotherapy for NPC. The effectiveness is still being debated. My oncologists were very insistent as they wanted a cure, since I haven't had any critical organ damage (kidneys). Considering permanent side effects is something you'd want to think about. Hang in there tryinghard. Do you have a PEG? that may help too. I had no PEG and the treatment was quite intolerable. 

Hang in there, it's close to the end! 

Cisplatin and 35 rads in the beginning....then another 3 Cisplatin/5FU, 3 weeks apart after.  This is where I used my PEG tube exclusively.  My mouth/lips turned to hamburger....I couldn't sip on anything but L-Glutamine in water, as even plain water stung too bad....and I had to sip from a styrofoam cup, because it was soft and didn't hurt my lips.

I was going to skip the last treatment, but changed my mind the day before....I came out with neuropathy in my hands which I still have 4 years later.  I also had a recurrence last October.  The recurrence wasn't in my throat, tho....it was in the lymph nodes by my collar bone.  For me, making the decision  to go on was something I put off till the last week before the next one....and I based it on how I felt at that time, not on how I felt the first two weeks after the treatment.

p 

Was easier for my husband to tolerate when he tried the cisplatin + 5FU. Otherwise you just have to wait it out. It was always worse in the morning for him because of mucous draining down during the night. I truly hope you find some relief soon.

Barbara

 I am 64 and my primary site was left tonsil with bilateral lymph node involvement.  I started treatment in February with 3 rounds of induction chemotherapy ( Cisplatin+5FU and taxotere) 3 weeks apart.  Rough time with the first round, primarily because of mouth sores, but dose lowered on next two rounds and I did okay.  I had a feeding tube inserted at the same time as my port but didn't need it during chemo.  With effort I was able to eat enough and always able to drink plenty of water.  I was given about 4 weeks break before starting 35 bilateral radiation treatments with concurrent weekly infusions of a drug call Erbitux.  I did okay until the 3rd Erbitux infusion which called high temp and horrible body/joint aches, a reaction they tell me is most common in Tennessee.  Strange, since I live in Colorado.  I got better with a lot of steroids and continued treatment.  All food started tasting terrible after about 3 week and I started using the feeding tube exclusively, working with a nutrition service that provided a formula.  This has kept me from losing wt.  I finished radiation the end of June and although my taste is back, I am still not eating because of mouth sores, swallowing issues and the horrible mucus.  I have an appointment with a swallow therapist later this week.  I have started back to work part time and the mucus and mouth sores make talking an issue.  My doctor tells me that the recovery may take longer because of the bilateral radiation but I am ready for the sores to heal and will try some of the remedies I see in this blog.   The salt/soda water soothes but doesn't seem to speed healing and the miracle mouth wash is great for about 20 minutes.