Hi,

I have several questions to help me get ready (both physically and mentally) re. RTX (35 sessions) and chemo (3x cisplatin), and would greatly appreciate a response to any of the questions below:

a. I understand that chemo could adversely affect the immune system. The doc said that if body temp exceeds 100.5F to go to the emergency. Other than good hygiene, etc. are there any suggestions to mitigate side effects. During the treatment, is it OK to encourage visitors, eat out, etc.

b. I am planning to do the Manuka honey before/after each RTX treatment. However, I also read concerns about its effect on teeth. Any tips to minimize longer term teeth decay?

c. My RO has suggested that I put a PEG in. I am leaning on doing this as I do not want to regret not having done it earlier just in case I need it. Is this a pretty straight forward out-patient procedure? Risks of infection?

d. I am meeting with my MO for the first time early next week. Should I be asking him to do any blood work to understand my kidney function (I understand that cisplatin can affect kidneys) and normal blood count? What other questions should I ask him?

Thanks in advance for your responses. I am counting on your support to get me through the challenges ahead, but am sure that I will get over it if I am mentally ready.

Best Regards,
Chetan

Chetan, I will address some of your conerns.

The Manuka honey is not a tested method of treating mouth sores. It may be helpful, or it may not. There have been a couple recent members who have had success with this. Make sure you discuss this with your doctor before using.

The PEG tube question is a loaded one! There have been many heated discussions with the pros and cons of having one. I am a PRO PEG user. It helped me tremendously! I have all kinds of tricks if you need help with it. A nasal tube is NOT the same, it much more temporary. The PEG tube is a very useful tool to help you get enough hydration and nutrition while going thru treatment. Its best to get it and never use it than to need it and have to wait to get one. If you have a difficult time and need to get one on an emergency basis, it could take a few days and sometimes a few days as way too long to wait. My advice in the PEG tube question is get it now!

Get a thyroid test with your blood work. Its important to know what your regular level is before you begin all the treatments.

The best thing you can do to prepare yourself is to be strong and well hydrated and nourished. No matter what take in a minimum of 2500 calories and 48 oz water every single day! Do not skimp one day and think you will make it up the next, it doesnt work that way. If your blood counts are bad which your doc should be checking on a regular basis then yes avoid public places and become a germophobic person. You wouldnt feel like eating out when your numbers are off anyway. Use caution and wash your hands frequently and always keep the antibacterial gel handy.

Best wishes with everything!

Chetan,
As usual Christine did a fantastic job of answering questions, but I thought I'd fill in with my "best" areas.

If you are fanatical about keeping your teeth (like me), you will brush and floss after eating anything (I would have skipped flossing so much, but stuff caught in my teeth). They probably have told you about fluoride trays/treatment . . . If not, ask, because it is beneficial during treatment. The dentist at the cancer center made my trays which were expensive, but heavy-duty. Problem is fluoride stings, and when you have even a few mouth sores, then ow-eee! My husband, who is a GP dentist, showed me how full to fill them, and it is not very full because it will seep out over the top easily. I used the kind of fluoride they recommended (stannous) and it stains your teeth. The other kind which they said I could use (sodium, I think) I would like to go to after I get through with the stannous I purchased.

I used baking soda rinses exclusively during treatment and never asked about the Manuka honey, although I had read it was good on the Sloan Kettering web site. I have some now & have used it with the post treatment sores to try. Actually it is good to eat, which is what I am doing now! I had very little in the way of mouth sores, probably mostly because of where my radiation was placed, but I'll bet that taking care of my mouth the way I did also helped. The baking soda dries out your mouth, but it sure helped me. The first 2 weeks after treatment, lots more sores, but they are gone now.

Blood work--I never worried about it, looked at it, but let my MO take care of it; they checked it weekly. I was mildly anemic (my fault for dosing with aspirin in the months prior to treatment and probably also because of my diet), but I am not anymore, so no problem there.

I made myself eat (food began to taste bad) and did not have a PEG. Few mouth sores was a lot of that. I have nothing against getting one, whatever works for you.
Anne

Chetan, yes to the fluoride trays. You can get either stannous or sodium fluoride gel from your dentist I'm sure.

I didn't get a PEG and later wished I had. Starting a few weeks into RT I found it extremely painful to drink even water. From what I've heard from others it isn't a big deal - a friend had one placed just a couple of weeks ago and it wasn't much trouble for him.

There were a couple of prescription mouth rinses I used to allegedly help with sores. None of them did much, in my opinion. I didn't know about the manuka honey or certainly would have tried it. I also didn't know about the so-called Magic Mouthwash... but I have a feeling that the viscous lidocaine I was using to try and numb my mouth prior to drinking my daily liquid nutrition might have served the same purpose. Which is to say it helped a little but not a lot - it numbed my mouth but not my throat.

And yes, please do count on us. We're all in your corner. Sounds as if you have a great medical team. Keep us posted... and...

Courage!

Hello I am new to the forum and also to the fact that my husband has cancer on his tongue. He is going to start his radiation and chemo in about two weeks. I am very frightened, do not know what to expect and want to be a good caregiver, cheerleader and help. What are some of the most important things that I should be doing now. I am encouraging him to gain some weight, he is thin and he just had some flouride trays made. I believe that our medical team is good and have faith in them. I feel so helpless here and want to get started on the right track.

Hi there. To both of you!

Chetan -

A) after chemo you will likely have some nausea... Standard protocol for chemo is - week one you may be tired, & a little sick - week 2 day 10-14 in particular... Try not to hang out in crowded places, or if friends are visiting make sure they aren't sick. Your immune system is taking a beating - so you are more susceptible to getting sick. Thiss goes for eating out and ordering in as well.

B) I'm a Manuka Honey user - it did work for me - check with your dr. If it's okay give it a try- it's meant to clean your mouth - nature's version of hydrogen peroxide. Apparently there was a study done saying that it doesn't cause cavities but if you brush your teeth regularly and use your flouride trays that should help prevent any damage.

C) peg - well there's always a risk of infection - it's an open hole into your body. My suggestion get some saline solution - sterile gauze - every morning when you've showered etc.. Wet the gauze with the saline- wipe around the tube/ wound to keep it clean and apply a dab of pollisporin. Do it at bedtime too.

D) tell your MO you are concerned about the affect on the kidneys - they will tell you what precautions they have in place. And drink drink drink. And yes on the tsh level it's good to know what you thyroid normal runs at.

To Ellen - if you hubby is too thin find out if they'll be putting a peg in. He may need it. The rest of what I said applies to you/ him as well. It's scary but I am sure you will do fine as a caregiver. He'll be tired so just understand, and accept that food is not going to be his friend for a while.

Hugs to you both it's not easy but you will get through it.

Hi Christine, Anne, Cheryl and David:

Thanks very much for your insights and responses. I really appreciate it, and had a few follow-ups:

Christine, you mentioned: "I am a PRO PEG user. It helped me tremendously! I have all kinds of tricks if you need help with it." Could you either message me

or post some important tricks that come to your mind? Needless to say I have zero experience in this, and anything you share will be all new to me. Based on

your earlier suggestion, I did get my thyroid test done last week. Regarding taking 2500 calories, I am keeping track of the proteins (target is about 70 to

80 grams/day), but not the proteins primarily because I do not know the caloric content in the home cooked Indian food. I was curious how people measure

calories if it is not labeled. The labels on pre-packaged food make it easy to track the calories on; but since I could not track the caloric content for

home cooked food, I gave up tracking calories completely.

I have the fluoride trays made up and will need to learn how to fill them. Regarding the baking soda rinses, do you basically purchase any kind of baking soda? Or is there a special kind.

Appreciate the tip on keeping the PEG clean with saline solution.
Thanks

I appreciate your time and collective wisdom. I cannot imagine how anyone can get through treatment without such support.

Best Regards,
Chetan

[quote=Chetan]Regarding taking 2500 calories, I am keeping track of the proteins (target is about 70 to 80 grams/day), but not the proteins primarily because I do not know the caloric content in the home cooked Indian food. I was curious how people measure calories if it is not labeled. The labels on pre-packaged food make it easy to track the calories on; but since I could not track the caloric content for home cooked food, I gave up tracking calories completely.[/quote]
This recipe calculator will give you nutritional information -- all you need to do is type in the ingredients (and amounts of each) you are using, then click on Calculate Nutritional Information. Be sure to include how many servings your recipe makes.

Chetan,
You are doing just what I did: try to get organized beforehand. There will be things you'll miss or won't use, but you will likely be glad you got ready.

Baking soda--any old kind. They usually give you a recipe in radiation, but I never made up a big batch, just a small one so I guessed (small amount for a glass of water) Some will have you put salt in it as well, but if you have sores, the salt is not good. I've seen a proportion of baking soda/salt/water on this web site before.

The fluoride trays: you want it to be in contact with the occlusal surface of the teeth, that means where they contact.
Some fluoride spreads easier than others. If you have to you can use a finger or toothbrush to spread it. You will have some squish through when you place the trays, but not so much it really bothers you. What does come through, just get rid of it with your finger or gauze or tissue. You'll get better at it. My instructions were half-way up, but for me that was too much, maybe I could not eye-ball half way good enough. Again, they surely gave you instructions on this, or they will give you.

Counting calories--to do it correctly you would have to know the caloric amount for each recipe ingredient, calculate the amount, add it together. Lots of work unless you make the same things a lot . . . If your weight is stable and you know what you usually consume, then you should be good. Trouble is, you might not be eating the same stuff throughout treatment. You should have access to a dietician at the cancer center to help you with this.
Of course if you are using a PEG then I could not speak to the procedure regarding calories. For myself I am sure I did not consume 2500 calories, I am kinda small. I don't know how much I did eat, just that my weight was fairly stable, which is what's important.

Home cooked Indian food does sound delicious to me!
Anne

I totally agree with anne - calorie wise I tried to keep it up but I was happy with being able to manage 12-1400 a day - now I'm trying to take in food and supplement my boost/ ensure. (when it's hard to eat and swallow it was enough to just get that much down. If you are doing feeds they generally run around 300-400 calories - so that's 6 or 7 cans... I could really use my peg so I figured if I drank 4 or more boost a day I was doing well. I also made sure my morning started off with a 30gm protien shake.

Baking soda is I believe 1 tbsp to 1 cup of water.

Good luck

Hi All,

I started RTX today. The TOMO machine was down so the doc put me on a regular IMRT machine. Tomorrow he said he would put me on the TOMO if it is fixed. Hopefully this back and forth between machines does not compromise the treatment. The RO has two plans, one for each machine.

Tomorrow I am being admitted to put a PEG in.

Chemo starts this Friday 6/10. They want to hydrate me three times a week. Is this normal? MO said he plans to include lots of nausea and anti-vomit meds.

I will be counting on all your advice and support to get me through this period. Thank you in advance for everything!

Chetan

Hydration is very normal as the chemo is hard on you kidneys. Not sure about the difference between tomorrow and imrt so nt are about bouncing back and froth but if your dr. Thinks it's okay then I would trust him.

The anti emetics do help for the most part - good luck Friday!!!

Thanks for all the information. My husband has the trays and is gargling with baking soda, now salt too. I will tell him to eliminate the salt if it starts to hurt. His tube is in so I will try to keep the nourishment up and follow your guidelines. I really appreciate the wisdom on this site.