Just Started treatment - any advice

Hi,

Gary from India, (diagnoised 08 Nov 12)

Just two weeks in Type 11 N1 M0 left tonsil (base of tounge) Cancer plus one lymph gland.I am being treated with the Novalis Radiation machine.I have 33 radiations and 6 chemo treatments with Cisplatin.(11 rads and 2 chemos completed)

So far so good but mouth is a bit sore and tounge very swollen. Taste buds seemed to have pretty well gone. So far no weight loss but struggling trying to eat as much as I need.

Any mouth care advice and eating tips would be a big help.

Thanks

Gary

Hi Gary! 

Its good to hear that you are doing fine so far.

It appears that you are taking treatment in India.

I am very worried about some symptoms i have now, which is very similar to symptoms of throat cancer. I am having persistant sore throat. I have sore throat whenever I drink cold water or eat arecanuts. I hv lately noticed a swollrn lymph or lump ob the back of my neck. I am now 29 years old. So i am planning to go to India for testing.

T

herefore, I would like to know if you have a suggestion for a throst cancer center in India. Since you have started your treatment you may have an idea about some of the better equipped centers in India. 

I am sorry i could not be of any help.

Any idea will be appreciated.

Thanks

NJ

hi gary.. thanks you very much..

I am curious to knw a little about treatment cost there as we normally go to trivandrum RCC. 

So do you have any idea about the cost for the whole treatment or each dose?

I wish you a faster recovery..

Regards..

NJ

On Dec 01, 2012 2:36 PM Gary52 wrote:

Hi,

Gary from India, (diagnoised 08 Nov 12)

Just two weeks in Type 11 N1 M0 left tonsil (base of tounge) Cancer plus one lymph gland.I am being treated with the Novalis Radiation machine.I have 33 radiations and 6 chemo treatments with Cisplatin.(11 rads and 2 chemos completed)

So far so good but mouth is a bit sore and tounge very swollen. Taste buds seemed to have pretty well gone. So far no weight loss but struggling trying to eat as much as I need.

Any mouth care advice and eating tips would be a big help.

Thanks

Gary

Prepare for the worst and bless your higher being for what you retain.  This treatment is hard and many lose everything in its course.  For seven weeks and the five that follow treatment everything can change.

Conserve your energy and your calories, keep excellent dental care and plenty of magic mouthwash on hand. I used to push my tongue just a little bit forward towards the mask during the radiation just to spare some taste buds from destruction.  In your case, it is part of your tongue so perhaps it is not recomended.  This is a dangerous condition, out of four of us fellows who were going through treatment in the same clinic at the same time only two are here today four years later.  One is writing this message; You take every precaution you can and learn as much as you can.  Don't buy the crap that 80% survive.  Take this seriously and fight like your life is worth it.

Mark

Hi Gary;

Your first source of information is always your medical team.  However, I have found that it is enormously valuable to read about the experiences of others who have experienced what you are going through.  Actual patients will give you a "worm's eye view" of treatment details.  You also get tips on how to deal with the side effects of the treatment.

One of the best such blogs is by the "Cheeky Librarian".  She had adenoid cystic carcinoma, but the treatment seems to be similar to what you will experience.  You can find her blog at:

http://cheekylibrarian.blogspot.com/

To find blogs about your specific cancer, check out:

http://beingcancer.net/cancer-blogs-lists/head-neck/

I have a friend who just went through treatment for adenoid cystic carcinoma, so I know how tough the treatment is.

Good luck.

Brian

On Dec 01, 2012 2:36 PM Gary52 wrote:

Hi,

Gary from India, (diagnoised 08 Nov 12)

Just two weeks in Type 11 N1 M0 left tonsil (base of tounge) Cancer plus one lymph gland.I am being treated with the Novalis Radiation machine.I have 33 radiations and 6 chemo treatments with Cisplatin.(11 rads and 2 chemos completed)

So far so good but mouth is a bit sore and tounge very swollen. Taste buds seemed to have pretty well gone. So far no weight loss but struggling trying to eat as much as I need.

Any mouth care advice and eating tips would be a big help.

Thanks

Gary

Hi Gary. 

I am 21 months out of treatment for throat cancer.  I also had one cancerous lymph node, but they never found the primary.  I had radiation, no chemo.

The sore mouth can be helped by a prescription liquid known as "magic mouthwash."  Here in the U.S. it has to be made in a compounding pharmacy.  Many folks have good luck with it for soothing a sore mouth and/or  throat.  Others have used rinses like baking soda.

If you have no sense of taste, that might be a good thing, as some people find that everything tastes awful.  Try to eat things that are calorie-dense in order to keep your weight up.  You need to think about getting as much protein as you can.  Most people do lose at least some weight during treatment.

I ate a lot of "smoothies" made with fruit and Greek yogurt.  You can add more protein, calories, and good fat by adding ground nuts.  They go down easily and are nutritious.

Have you had a feeding tube placed?  If so, don't hesitate to use it to supplement what you can eat by mouth.  Good nutrition is very important for healing.  If you don't have a feeding tube, you may want to consider having one put in if you are not able to eat enough. 

I got mine about half way through treatment.  It was an outpatient procedure, done under sedation, and didn't cause me to miss any radiation sessions. 

I wish you all the best as you progress through treatment.

Susan

On déc. 01, 2012 2:36 Gary52 wrote:

Hi,

Gary from India, (diagnoised 08 Nov 12)

Just two weeks in Type 11 N1 M0 left tonsil (base of tounge) Cancer plus one lymph gland.I am being treated with the Novalis Radiation machine.I have 33 radiations and 6 chemo treatments with Cisplatin.(11 rads and 2 chemos completed)

So far so good but mouth is a bit sore and tounge very swollen. Taste buds seemed to have pretty well gone. So far no weight loss but struggling trying to eat as much as I need.

Any mouth care advice and eating tips would be a big help.

Thanks

Gary

Hi Gary,

My experience has been not so far from yours with a stage 3 tongue cancer extended to base of tongue and 2/3 nodes. I underwent sugery, 50 radiations (70grey) and 11 Cisplatin sessions.

The problems usually arise later : weight loss, mouth ulceration, mandibular osteoradionecrosis, or not... or not for years. Weight loss only arises with the post treatment complications. I personally went through the feeding tube, mountains of high protein powder drinks, oceans of geen tea, and from the start maximum vitamin, amino acid, minerals, oligo elements supplements. In Europe, the baking soda 1.4 % solution is our magic mouthwash.

Two years have passed, the cancer is gone but the post radiation problems are the toughest. Over 60grey radiation, they are likely to appear - but how heavily and when, noone can say... Best of luck in a battle I know.

Have you tried rinsing with a teaspoon of bi-carb in a glass of water 3 times a day