Just a note to my friends:

Completed the 1st 5 treatments of Carboplatin and radiation. So far, so good!. No strong reaction to Carboplatin. However, my mouth is starting to feel a little funny. My mouth is only slightly dryer and my tongue is not quite as mobile as before. I had a grilled chicken cesear salad for dinner, and had a difficult time moving my food around in my mouth.

I also saw one of the top radiation doctors today and finally able to ask some questions. Interesting enough, the fact that although I did Induction Chemotherapy which reduced the tumor significantly, the radiation will still treat the cancer based on the original CT scan. I was hoping that the radiation area to get the higher dosage would be reduced. But no luck! As he explained, if you throw a tomatoe agaist the wall, even it is doesn't stick, it still leave it's mark on the wall. Same with cancer cells, there still may some remaining in that area althogh it had been treated with chemo. I'm hoping that this double wammy gets them all.

I also learned that I'll be losing my salivary glands on the left side. This doctor added a radiation dosage to a node on my left side which didn't show on the CT scan. (The CT scan showed no tumor on right side and only a SUV of 2.9.). I hope what saliva remains will be sufficient. No guarantee from the doctor.

I'm a little disappointed concerning my left salivary gland. May ask doctor about Amifostine, but I understand it only works in 30-40% of people and has harsh side effects. If anyone knows anything about it, please let me know.

Hope eveyrone has a wonderful weekend. Enjoy Mother's day.
Take Care
Sandyst

Sandy, one week down six to go. Glad you are still able to eat fairly well. It will get progressively worse as time goes by so enjoy it now.

I was treated with radiation to the left side for two different tumors. One was behind my top left molar and the other was inside my left cheek. I didnt have any lymph nodes involved, both were a stage 1. My doc told my my salivia would suffer and couldnt guarantee that it would recover suffeciently. Even the right side would take some scatter radiation.

Im about 20 months post radiation and I am almost 100% as far as salivia goes. The left doesnt work but the right side does. I do not need to carry a water bottle like most do post radiation. Even though everybody is different in their side effects and responses to tx, thats one area that I did ok with. There is hope for you to get thru this with similar results

Dont forget to keep stretching your mouth open as wide as possible several times per day so you dont end up with trismus. Thats a side effect that I struggle with daily.

Thank you for your positive prediction. My body has been absolutely great in responding to treatment, and even the side effects. You've given me hope that I'll have the same results!
Knowing that saving even the right salivary glands will make like more pleasant for me, makes me feel happy.

Thanks Again
Sandy

Sandy,

I have already received 4 shots of Ethyol and no side effects. The RN told me that the worse effect is nausea, but so far so good. I don't know if the shots will help with salivia after treatment, but I am willing to give it a try with positive hope.
Ask your Dr about it, maybe it will work for you.

Bill C

Sandy, I sure hope you can keep eating salads and such and help wash them down with saliva. I would bet a lot of us would like to try a salad so go for them and solid food while you can. I will probably not get saliva back but will never give up. You will do fine and beat this stuff.

Sandy,

I had 2 positive nodes on my left side and BOT primary and while my saliva and dry mouth and taste were really bad after Tx I slowly recovered them all over a 24 month recovery period and I would guesstimate I'm back to say 90+% of pre Tx.

I don't have any limitations on what I can eat although I do make sure I have something to swallow if possible before I eat.

I hope your RO is wrong.

WFC:
I've done some research on Amifostine, and want to pass on a concern. Amifostine is very hard on your kidneys. Almost every site makes this comment. Please make sure you are adequately hydrated (8 glasses) before treatment. And some afterward.

Also. Amifostine can be given two ways: injection (newest method)and intravenously. I also understand that all chemo drugs are hard on your veins. If you're having difficulty, ask about getting it intravenously through a PORT. A PORT is a little devise under the skin that protects your veins from the chemo.

My doctor refuses to give me Amifostine, but I don't know why. I haven't found anything negative about the drug, however, I do know people have had a difficult time tolerating it. Some people have stopped treatment and/or stopped radiation because of the side effects. Quite honestly, I'm a little confused by my doctor's reaction.

I going to a meeting on Wednesday held by a specialist in radiology. So I'll ask him, and relay the answers.

Rest and Take it Easy this Weekend
Sandyst

Thanks to everyone for being part of my support network.
Have a great weekend.
Sandyst

You have a great one too Sandy and relax.

Rest and enjoy your weekend Sandy you have certainly worn yourself out with research. It is exhausting sometimes trying to figure out what the doctors are thinking. I will be thinking of you and looking forward to the answers that you get next week.

Patty

I had Amifostine for about half my treatments but sadly developed an allergic reaction to it, so they stopped.

While I was taking it, I had to show up early for a weigh-in (The nurses were adamant about not losing weight while taking it, plus drinking lots of water before coming in), then have the shot and wait around for it to work before getting nuked.

After my reaction, I just came in and was nuked.

Sandy,
I am sure your doctor doesn't want to over promise, but I doubt you will permanently lose a salivary gland - that would be very unusual for BOT treatment on Tomo.

As the doctor said, "no guarantees", but I was treated as if my primary was BOT (along with other possibilities).

I had several levels of nodes on both sides nuked from 50 to 70gy and my saliva is usually just fine and all my glands are pumping.

My bottom right salivary gland on the side of my Selective Neck Dissection is still somewhat swollen. It took the most hits, and my monthly ENT tells me "it is not a very happy camper, but it is dealing with the situation, working pretty well and getting over it".

Most Tomo patients get back good salivary function quite quickly. Mine was at its worst the month following Tx. My salivary flow tested in the normal range at my last month CCC visit.

I still have occasional but short dry mouth spells (an hour or less) and have noticeable dry mouth at night.

Last month everything in my mouth had healed to the point that both my monthly ENT and quarterly RO said if they didn't know, they would never suspect I had ever had radiation.

Also last month the lymph-edema went down by about 40% and is no longer noticeable.

I was told at the CCC that everything looks right on track for "perfect Tomo".

Now lets just hope my up coming PET results will be as good.

Hope for the best

Pete D,

What was your reaction, and how is your saliva now?

WFC

Don:
Thank you for all your help. Your email gives me great comfort.
To use a kids' term, I was kinda "freaking out." This will help be stay positive through this mess!!!

Take Care
Sandy

My allergic reaction was a skin rash on my sides and back (They inspected me every time after my shots just before my nuking session, which were conventional XRT, not IMRT). Two years out, some of my saliva was coming back, but nothing like the original, but now I can't tell because I have so many secretions still happening from my most recent surgery and in fact am taking medicine to dry me out a bit.