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My mom finally received her treatment schedule.

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

Hi All:

My mom finally received her treatment schedule after 2 months of the run around. She will have radiation every day and chemo once a week. They gave her three choices for inducing the chemo and she chose an injection via the vein. Also, the doctor prescribed her Zofran for nausea. He said the Enmed was too strong. Does anyone have any experience with Zofran? Also, he wanted to wait to prescribe the Mugard, which I really don't understand. I don't want her to get the damn mouth sores and then start taking the stuff. I want to prevent the mouth sores from happening at all. Please let me know your thougths on all of this. Thank you.

KTeacher
Posts: 1009
Joined: Jan 2011

Zofran worked for me during chemo and was given to me after each Cyberknife treatment.  Glad I had a few left, needed to use them for nausea side effect.  Phrannie will let you know about Mugard.

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

Thank you for the post. Sorry if this is a dumb questions, but what does cyberknife mean?

Also, did you start taking the Zofran right away or only when the nausea started?

KTeacher
Posts: 1009
Joined: Jan 2011

Cyberknife is a different more pinpointed delivery of radiation.  I don't think that it is used until other radiation has been tried.  I am on my 4th Head and Neck cancer since 2010, nerves on cheek were involved.  Cyberknife was 5 treatments at 30-40 minutes each.

Zofran for chemo--as soon as the first wave of nausea came on I took it, never waited for another wave (the first day I waited, got sick quite a bit)

Superthread--have you read the Superthread.  Tons of information to use before, during and after treatment.

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

From what I understand about mugard it is best to start it with Rads begore sores have a chsnce. I started taking it about 2 weeks in & it did nothing for me. I didn't even order the script. My Dr had some samples he gave me to try first. I did not have chemo & so didn't have chemo induced nausea but I would just remind your mom's Dr that everyone is different. I have had severe nausea with both of my pregnancies & zofran doesn't do a lot for me so I would just have hom be willing to prescribe sonething stronger if she needs it. I hope treatments go by quickly for her!

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

Thanks for the post. Question: Did you develop mouth sores because you weren't able to take the MuGard in a timely fashion?

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

Thanks for the post. Question: Did you develop mouth sores because you weren't able to take the MuGard in a timely fashion?

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

I did develop mouth sores. Mine were not as severe as some on here. I did not have a PEG tube & continued to eat by mouth with the help of numbing & pain meds. I'm not sure if having the mugard from the beginning would have prevented the sores, but I think Pheannie & Lauralyn both started with the mugard & had success with it/fewer or no sores. Definitely something to talk more with your mom's Dr about. 

CivilMatt's picture
CivilMatt
Posts: 3135
Joined: May 2012

JR & June,

I took Zofran and it worked for the nausea, but caused constipation (watch out).  Even though I did not use Mugard there are no guarantees that it will prevent mouth sores.  I dealt with sore mouth, throat and tongue with Magic Mouth Wash.  The vintage I had made (compounding pharmacy) was (sore) spot on.  It worked very well for me.

Check out the must have items in the superthread, many of them are helpful.  It is best to be over prepared, especially going into a weekend.  I think I  counted once and had 22 of the items.

The best advice I got from H&N central was drink lots of water, you must keep swallowing.  If you could see me right now you would notice I am eating Pringles Potato chips, chasing them with a sip of water and swallowing like nobody’s business.

The life of a recovering H&N member can be good.

Sometimes during treatments we look and sound bad, but be assured we love our caregivers a lot (all of them).

Matt

phrannie51's picture
phrannie51
Posts: 3890
Joined: Mar 2012

In the case of Mugard, it's supposed to be started the day a person starts radiation....I didn't start it until about a week in....and had a sore starting on my upper lip....when I got the Mugard, the sore was in the "sandpaper" stage.  That's where a place/spot on the inside of a person's mouth takes on a grainy feel when felt with the tongue.  The Mugard staved off that sore, and I never got another.  She'll feel the beginings of a sore and when she does tell her to demand Mugard.  I don't know why some of these guys are so obstinant...like they are paying for it or something.

I had Zophran, Compasine, Atavan....and Emend.  The Dr. might be holding off on the Emend, since she's getting a smaller dose of chemo every week, whereas I had a huge dose every 3 weeks....doing a wait and see on it...it doesn't sound like he'd be against using it if she needs it, tho. 

Good luck to mama.....sounds like she's about to get on the bus and get this trip moving.

p

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

This is very helpful info. My mom really does listen to your advice and talks to her doctors accordingly. Much appreciated.

-Robin

donfoo's picture
donfoo
Posts: 1353
Joined: Dec 2012

I think Mugard is in trials and maybe not fully endorsed by all.  That could be part of reason you have to push the issue a bit more.  

Here is a very strange story about my experience with Mugard and my RO.  I ask about Mugard and it turns out he is leading a stage 3 clinical trial with Mugard. He asks if I want to participate. Basically there are just two groups :  those using it and a placebo. I declined as my preference was to actually use it rather than have a 50% chance. Well,  he never prescribed it.  Go figure that one.  He'd give it to me via the trial but not give it to me if I did not participate. 

 

Salt and baking soda in warm water worked for the most part. 

debbiejeanne's picture
debbiejeanne
Posts: 2691
Joined: Jan 2010

sorry, dbl post  Cool

debbiejeanne's picture
debbiejeanne
Posts: 2691
Joined: Jan 2010

wishing ur mom the very best as she travels this road.  come here often as u'll get good suggestions on what to do about the side effects.  saying prayers for mom and family.  keep us posted on her progress.

dj

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

I will be sure to keep you posted. I am sure there will be lots more questions.

jim and i's picture
jim and i
Posts: 1692
Joined: May 2011

The Zofran really helped Jim. They gave him a dose at the chemo clinic then instructed him to take a dose immediately when he went home. Like the pain meds you have to stay ahead of the nausia. He didn't have mouth sores so no need for Mugard

Debbie

hwt's picture
hwt
Posts: 2043
Joined: Jun 2012

I wasn't offered Mugard and I did not find this site until I had finished tx. I did not have sores in my mouth but my lower lip was horrible and painful too. It cleared immediately following tx but remains sensative a year and a half later. I would try the Mugard, it can't hurt.

PJ47's picture
PJ47
Posts: 345
Joined: Sep 2013

Had 4 doses of Zofran following my biopsy and debulking of the tongue base tumor, and general anesthesia which made me have nausea and vomiting.  Zofran did not work for me at all. After 2 hours of N&V,  I finally asked the nurse for phenergan and within 10 minutes no nausea!  Everyone's body is different.  If zofran does not work ask for phenergan or compazine.  They make you sleepy but work well.

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

Thank you everyone for your posts. Your information is extremely helpful for us.

 

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