Keeping the Faith!

I'm a new patient to Brain Cancer and found all of your replies to be helpful.  I was diagnosed apprx. 2 months ago with a Glio-Grade 4 brain tumor after suffering a seizure at my house.  Tumor was successfully removed, and I came home feeling very energetic, however, I am now going thru radiation (35 treatments), along with chemo (Temodar) (just started last week).  I have been taking two different anti seizure meds (Keppra & Vimpat), and Dexameth(anti-swelling) med.  I have been experiencing the metal mouth issue, but drinking excessive amounts of liquids seemed to have helped that problem.  The issue I just started experiencing about a week after radiation/chemo is that I cannot drink/eat anything without a bad pain around my rib cage/chest happening anytime I swallow liquid or soft food.  The doctor has me taking Zofran & Pepcid 30-60 minutes before taking Temodar because i should be taking those 3 on an empty stomach.  Then I was advised to eat an hour after taking Temodar.  Could any of you advise me as to how I can relieve the pain I am experiencing ALL DAY anytime I swallow liquid or soft foods?  I'm thinking it is heartburn??  Thanks so much for sharing your thoughts with me.  My mood is definitely on a roller coaster and I am going to keep the faith!...Diane

My husband also has the glioblastome 4. He has not had any pain in his stomach which makes me wonder if the Vimpat is the cause.  That is the only difference I see in your meds.  He is now off the dexamethazone.  He does take an otc antacid every morning.  Wish I could help you more.

Hey Diane, so sorry you have to be on this journey but I promise you there are many along with you and there is a lot of support here.

I don't know which drug to blame for the pain. I'm sort of suspicious of the Temodar. Pretty strong stuff too. Here's the schedule that seemed to work best for my son Andy: dinner at 6, with all the Dex, Keppra, Pepcid, etc. Then at 9 he'd take his Zofran. Wait an hour, take the Temodar and go to bed. No more food in the tummy until breakfast.

I wonder if the food you are eating an hour after the Temodar is the problem? It might be worth trying this as most people say it really helps them. You can even boost your potential for just going to sleep if you take some Melatonin or benadryl at the same time... wake up and go YAY I didn't even feel that blasted Temodar while it was shrinking my tumors! :o)

I know what it's like to take care of someone who is struggling with the emotional rollercoaster of serious cancer like this. I don't know what it's like to be you. But I want you to know that I very much hope you get wonderful results for all these things you're going through. I hope I can help along the way. I'm getting a little hooked on this website and I guess it's just because I feel not so helpless if I can be part of a community that cares and makes a difference.

Take care and keep in touch, 'K?

Sarah

mother of Andy 27, dx gbm/pnet 1/09

The Keppra is to blame! It is pretty standard to add a drug like Pepcid along with Keppra, because it s so hard on the stomach.  The Temodar is, too.   It sounds like you need a stronger drug than Pepcid.   Protonix is really excellent, it is the only thing that works to keep the acid down in my husband.

I would  have to go with Sarah on this one. This is the schedule I used while on Temodar and never had any problems. I am still on Keppra, at one time was up to 3,500 mgs and never had the problems described. In fact I guess I was lucky and didn't expericence much stomach problem for the 21 months I was on Temodar. And like I said I followed the scheduled Sarah described, except, I would take the Zofran about 8:15, Temodar at 9:15 and wait about 45 minutes to lay down.

Kathy

Wanting to add something else to my previous quote. Prior to my diagnosis, I was on meds for acid reflux, ulcer and hiatial hernia. Protonix is what I was taking at time of surgery. While on treatment and for the past months since being off treatment, I haven't had a problem with my digestive system. Within the last few weeks, I have noticed some symptoms returning....Just wanted to throw that in there. I am now on Keppra and Topomax for my seizures and have been for over a year.

Thanks,

Kathy