Hi All,

One week down, six to go. I am on the 3 big bag method of cisplatin and daily Rad treatments. Treatment started Oct 1.

This past week was a constant battle to manage loss of appetite, nausea, uneasy feeling, lack of energy, chemo fog, and constipation. I have been on Zofran and Compazine. I found Zofran not very effective and it might make me more uncomfortable. I stopped Zofran yesterday to see if it helps.
Any thought here would be helpful.

I lost the weight I put on prior to treatment; I am about 153 lbs. Which were I have been for several years.

So far the Rad treatments have not been bad. I kind of enjoy them. I just lie down and go blank. It's over in no time. My next is just starting to get tight but not bad at all.

My mouth feels a little numb and my slyiva taste funny and is a little thick.

Last night constipation was unbearable, Very painful and difficult. Any thoughts here will be helpful.

Getting through the next 2 weeks looks doable, albeit somewhat unpleasant. However I am very scared about Chemo 2 and 3. Are these much harder than 1?

Hockeyda,

My doctor had me take a stool softener called Senokot S. It's all natural and sold over the counter. Ask your Dr. what he thinks you can tolerate. It did help me.

Most of us begin to start having problems after the 2nd Big Bag chemo and it doesn't get better until we finally walk out of that dark tunnel around the 3rd week post Tx. Let's hope you are one of the small % that breezes thru w/o many problems. The pain meds are likely the cause of the Big C. I didn't start having those problems until very late in my Tx and thank G because you are correct, it's VERY painful. I tried everything and nothing worked for me. I eventually stopped taking all pain meds. You may soon lose your taste. I had a hard time with that mentally because I wasn't told it would happen. Good news is 1 week down and otta here!

Hockeydad- What is the 3 big bad method?

Tom has just finished his first week of rad and one day of chemo...however, we are the in the hosp due to a 102 fever...not sure what the problem is, but being a caregiver is a hard job as well...
Becky -wife caregiver
Tom tongue cancer HPV
We are being treated at MD Anderson in Houston, Teas

Sorry to hear Tom is having bad side effects. I had lots of them, but fever wasn't one. Hope this breaks soon.

With regard to the 3 big bag method of cisplatin - that is 3 bags of cisplatin and related hydration usually administered every 2-3 weeks as opposed to weekly doses of cisplatin. I don't know if it is definitive as to which is easier to tolerate. I never did manage that third bag.

Good luck to all

Donna

Hope the constipation has gotten a bit better. The key is to stay ahead of the game when you are taking pain killers such as oxycotin....they are very binding to the system. Ask your doctor (or nurse) for their tips...they have seen this happen in most patients. My husband started with Miralax, moved onto Sennakot and Colace and then to Magnesium Citrate. The later did the trick for him, but ask your medical team if they recommend it for you.

Try to keep drinking as many Ensure Plus shakes as you can. My husband used the vanilla version to wash down every meal. For this purpose, he found the vanilla most effective....the chocolate was more of a "dessert" item. They have 350 cals and 13 gr. of protein....so they will help keep the weight on you. Liquids, whether it be water (try for 10-12 cups a day), Ensure, etc....help "move" things along through your system.

Have they prescribed ativan? Good for nausea and anxiety.


Sent you a PM with more info....

GOod luck with week 2.....

Thanks all, I am not on any pain killers as of yet. Just anti nausea stuff. I stopped taking zofran. I think this made me worse. I am tring to decied wether to stop taking the compozine. Right now its not bad, but I don't want to get behind this. Did anyone skip the nausea stuff with cisplatin?

Today starts week two of rads. Good luck Tom and Becky.

I had big problems with compazine but never had any issues with zofran.

Compazine can cause restless leg syndrome. I always laughed at those commercials on tv, never really believed it was something real. That was until I got it while I was sick as a dog. I paced the house, back and forth and was so exhausted I felt like I would fall over. When I would sit down my legs would bounce up and down like I was having a seizure. I felt like someone was controlling me like a remote control car. Compazine has several other side effects which can make it not the best but it doesnt happen to very many patients so unless you try it, you never know.

Zofran works by stimulating the brain to not feel nausea. I still take that even 5 years later.

There are several other meds out there that can help. one of the pills I took my pharmacy tech told me I was very lucky to get as it was $100 a pill. She said most insurance companies dont cover it so most patients have to go without. Wish I could remember the name of that medication but you know with this chemo brain of mine I cant recall what it was.

My constipation has settled down, I take 2 senna's and 1 duclax with every meal.

Oh yes I remember the constipation with horror during the first chemo round! I was prescribed Laxido sachets which tasted disgusting but I made damn sure I took them and they kept the problem at bay after that. I tried a few things for nausea, but can't remember what just now. Ask what alternatives they can offer. I was told that there were many different drugs to try. Good luck with find the right ones for you. Sally

Hi all,
Two weeks down, starting third week. No chemo this week just daily rads. However the rads are really starting to hurt my mouth. It hurts to east, drink, and brush my teeth.

I have started to use the dental trays. But what tooth paste should I be using?

I am eating cereal with milk for breakfest and lunch, and a few bites of whatever I make for the family for dinner. I also drink 4 boost plus per day. I can't taste anything any more. I just ordered the VHC Boost 4 cases.

I am currently not taking any pain meds other than tylenol. I also take two stool softeners per day.

5 more weeks and 2 chemos to go. This has been the longest two weeks I can remember.

Tomorrow I meet with thw rad doc. Whad pain meds should I get?

Hi,
One thing that I did was using viscous Lidocaine. It is local, it only lasts for 20 minutes or so, but it helps with swallowing and speaking. It allowed me to dial down the more potent meds.

Here is a link to a NIH site
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682701.html
not sure if this is allowed. If not SORRY guys.

Markus

The link is ok, Marcus. Its not selling anything and is a government site.

Nice to see you posting again!

Try Biotene tooth paste. And the spray is good too!