Hi
I was glad to find this forum as I was recently dx with tonsil ca.
My family physican noted some swollen lymp nodes on a routine eval early in October. A CT scan followed by a skinny needle biopsy of the lymp nodes indicated SCC.
PET scan showed four lymph nodes invoved.
Tonsillectomy 10/25/13 and various other tissue sample biopsy results indicated poorly differentiated SCC of the R tonsil with clear margins p16 positve.
Both RO and MO have proposed a course of Chemo/RT.
Just had my education session last week and mask fitted.
Due to the upcoming holiday and the RO being away I have a scheduled start of treatment for 12/2.
Cisplatin will be the med used and total dosage for R/T will be 70 Gray.
I hope to be as thoroughly prepared for my treatment and the potential side effects as I can be... both physicaly and physcologicly.
Thank You

Welcome to OCF! You have found the best place for info and support.

Try your best to eat alot right now to build yourself up. Dont worry about gaining weight, just eat.

There will be many appointments coming up. You will want to visit your dentist for a check up and flouride trays. Get a hearing test, full blood count with thyroid and testosterone levels. Thats only a few things that will need to be done prior to any treatments. Read and educate yourself so you can advocate for yourself. Take someone with you to appointments.

Best wishes!

Christine
Thanks for your reply.
I have had a thorogh dental eval one tooth needed to be extracted and will be making a visit for flouride trays next week.
Prior to the cisplatin infusions they do a full lab study
to asses and see if they need to modify the treatment.
I am aware of the potential for thyroid issues with R\T, but I am not on the effect of treatment on testosterone levels.

Thyroid dysfunction can increase as more time goes by after radiation treatment, and some may not even be testing it, at least twice a year, some do more often, and It's not on the CBC. As with the other organs, an eye exam too. I'm blind in one eye fom chemo, ocular toxicity, which can cause a host of eye problems, infections, and blindness if not properly treated, neuropathy also can be permanent, so tell the doctor of any hand and leg numbess, pins and needle sensation.

Good luck

Hello Frank - yes you found the absolute best place to be. You also just joined a really big and really supportive family who care about you and helping get you through this upcoming war with the least physical and psychological damage possible.

We've all stood in your shoes, so we know what you're going through now and about to go through later. They have helped me immensely.

When they tell you to eat, eat, eat, listen to them. Once radiation and chemo start the side effects are going to make you lose your taste and your saliva and your throat is going to hurt. All these things together make you have no desire to eat, so you will lose weight. the goal of course is to not lose so much weight that they have to hospitalize you for malnutrition and or dehydration and/or put in a PEG feeding tube. If you can get fattened up right now, you will be a happier camper later. Since my surgery Sep 20th and with 3 weeks of rads I have lost 16 pounds, but I had an oral infection post surgery that brought on my weight loss earlier than planned. My nutritionist fusses at me every week. I am just choking down food every day as I have no desire to eat.

I have a very similar diagnosis as you, tonsil cancer, SCC with HPV-16, but no lymph node involvement at this point, so I am getting rads only, 70 Gy, just like you. So far the only radiation symptom I have is a sore inside of my left cheek. It feels like it would if you accidentally bit it real hard, an open sore that hurts. I've found that rinsing with salt water baking soda solution helps. I added some oral lidocaine to the mix, that helps numb it before I eat and before going to bed at night. that way I don't have to take the oxy they have prescribed.

Start reading and educating yourself. Get a spiral notebook to write down all the questions you will have from reading, cause you're going to have a lot of them. Take that notebook with you to write down what your doctor and therapist tell you so you can keep it straight.

We will help you along the way.

take care, Tony

Please listen to the advise to eat. I lost 95 pounds, thank goodness I had the weight to loose. Stay in contact with those who have gone through this. It really helps.

I am finished with treatment last r/t end of jan....70 grey and seven cisplatin infusions and I made it through.
Lost 40 lbs. by the end of it and it really kicked my butt!
C/T SCANS in march and august showed a significant reduction in the size of the involved lymp nodes.PET sacn in may clear! I have been able to start going to the gym again since june but I am taking it fairly easy with my exercise. Recent follow up with my oncologist indicated an continued lower hemaglobin at 10.9 and elevated CPK (2,000)and slightly high Creatine.Are these typical side effects that you may see due to reduced kidney function with cisplatin and or radiation. I have been trying to eat better with more fruits and salads but maybe I am getting too much protien causing these levels to be elevated.
Further lab work next week as well as a kidney ultrasound to be done.

Cisplatin is known to cause kidney problems with some patients. I suggest pushing your water intake to take in a minimum of 48-64 oz daily. This is especially important to patient when undergoing chemo treatments to flush the chemo poisons out of their body.

Wishing you all the very best. Please keep us posted. This could be something future members are facing, they can benefit from your posts.

I went through the same thing with the first round of Cisplatin. My creatine stayed around 1.2 for years and I had 3 bags of IV fluid daily the first 6-7 months after treatment. If drinking water doesn't improve things, you need to check this route.

Depending of what kind of protein you are taking, what additives it has, etc., it could be causing problems but not likely unless you are downing 26 gram amounts throughout the day without adequate workouts. You would most likely develop pancreatitis before kidney issues.

I think it's the creatinine, not creatine, in regards to measuring kidney function. Mine was normal pre-cancer, had kidney failure as a result of TPF chemo, and my new baseline is now 2.3 with stage 4 CKD, although it was up to 7 several times, with acute kidney failure, and is when they start considering dialysis, maybe even before, but thankfully my numbers stabilized back. There are many other factors involved, not much that may be done once damaged. I'm told to stay away from ibuprofen, Tylenol, not gain any weight when I went up to 200lbs last summer, no contrast with CT or MRI. Maybe see a nephrologist also.

CPK, Creatine Phosphoskinase Test, measures the enzyme in the blood, which usually is supplied to the heart, brain, skeletal muscles. Creatine is the chemical to supply energy to these muscles.

Doggone autocorrect. I thought I put in creatinine but something went awry between the brain and thumbs.

I thought that, but just added in case others didn't know the difference. It can be confusing, still had me wondering, and I'm certainly no expert.