Hello All, I am Venkat (Age 34) from India working as a Software Engr with the big Blue. 8 month ago, started seeing a small leukoplakic patch on right lateral border on bottom side of tongue. Contacted Oncologist, and he said it is leukoplakia and advised to grind the sharp teeth, but the dentist said no need to grind as it is equally sharp as the other side of the tongue. It slowly started becoming ulcerous in around 4 months. This time dentist said, go for a biopsy. Well, it proved to be SCC which I was suspecting for nearly 6 months. The tumor size was around 1.5 cm x 1.5 cm which doctor said is small enough and very localized by that time.

Now, surgery was done on June 10th 2011. MRI showed lymph nodes were good, but doctor did a neck dissection and removed 9 lymph nodes, 1 submandibular salivary gland and etc., All were negative for metastasis. That was good news. Post surgery, I was able to speak, but with a slur. I was feeling really better 20 days after surgery. Tongue healed completely, but was numb. Lost only 3 kgs by that time. Every pound counts as I am lean.

In the next consultation post surgery, the tumor board advised to go for preventive adjuvant radiotherapy aided by sensitizing chemo (cisplatin). This scared me really very much and it proved correct.

After 2 chemos, acidity started showing up which I never had in my lifetime. Radiation and chemo combined was causing enough distress. Now into 20th exposure among 30, here are my major problems...

1. Trismus...Able to open only 2 index fingers width...max 3 cm.

2. Very thick saliva, pungent in odor, turns yellowish if kept in mouth for around 15 to 20 min. Fills up the throat during night depriving of me sleep (on sleeping pills for the past 2 days)

3. Left lateral tongue border ulceration of around 1 cm width, 4 cm length. Yellowish in color representing mouth sore.

4. Forgot to tell, 2 teeth adjoining tumor were removed, but the last teeth (if I can call it as third molar) was spared. That should have been removed, because that kind of touches the rear edge of the mouth and kind of gets a little inside. Not sure what to do with it as I was advised by a dentist, not to go for extraction after for the next 6 months.

5. Cisplatin chemo has induced acidity, which I think is slowing reducing.

For #1 above, have ordered Therabite. Hope that helps.

For #2 above, practically how much time it takes for the saliva to thin ?, whatever is produced (I am ready to embrace dry mouth but not thick saliva). For every sentence that I have to speak, I need to spit it out.

For #3 above, I believe ulceration will go away.

For #4, I can bear with it.

Now coming to the emotional aspects, yes it feels depressed to bear through the trauma of these treatments and the strong urge to talk to people, get back to work, lead normal life whatever the new-normal is.

Hope some day, doctors could come up with a cure all kind of a medicine which helps our immune system to fight it rather than the chemo and radiation which cause way too many side effects disturbing the normal life. Atleast I am hoping in a 20 year span, some easy medicine will come up or a vaccine.

Will keep posting updates to this topic when my pending radiation finishes and I start getting normal.

Otherwise, sometimes I feel it is just one of the phases that we have to go through as authored in our life-diaries that God has desired. Scientifically, the complex machine makeup has some started developing wear and tear and perhaps with many bugs as in software. Nevertheless, things do not get fixed in fast and furious ways. So I am looking for a brighter tomorrow to lead a happy life with my one year baby girl. Not worrying too much about the future. This earth is already in a turmoil and I am just a speck on it. I guess the problem lies with God creating us so intelligent to analyze so much and write so much. Getting too philosophical, I am ending this here.

Thanks
Venkat

Venkat, welcome to OCF! You are no longer alone in your battle! Now is the time during radiation treatments when most of us started feeling pretty lousy. You are 2/3 finished already so no matter how rough it becomes, do not give up.

As far as the trismus goes, while waiting for the therabite, begin doing some mouth opening exercises. This is important so your limited opening doesnt get worse. Open your mouth as wide as possible and hold it for 7 seconds. Repeat it 7 times in a row and do this 7 times per day. Stretch as far as you can when holding your mouth open.

Soon the mucous will disappear and the dry mouth will start. If I remember correctly, it was about 3 weeks after I finished radiation when that change happened. Some patients get a suction machine to use at home. Ask your nurse about it when you go for your treatment. Its helpful to rinse your mouth a few times per day with a baking soda mixture. Mix about 2 cups of warm water with 2 tsp. baking soda and 2 tsp salt. If the salt burns, cut it back or omit it. This will also help heal your mouth.

Best wishes with everything!

Venkat..sorry you have to go through all of this. Your signature reads similar to mine, but I didn't have the radiation or chemo.

If you didn't have mets in the lymphnodes what was the reason your Doctor ordered Radiation and Chemo, I don't understand?

Best Wishes,
Connie

Welcome, Venkat, that's a hard road to go but plenty of support here for you.

Hi Christine,

I guess I have seen more posts of yours than from any other on OCF and expected a reply from you. Thank you very much for following up on my post.

1. Yes I have started mouth opening exercises. I discovered it when I was not able to mouth wide enough to keep the mouth bite during radiation. Waiting for Therabite.

2. On the cleaning front, yes I am rinsing with baking soda + salt water solution. That kind of eases the sticky / greasy mouth.

3. Good to know that the mucous will ease shortly. Not sure about the experience of dry mouth though. May God reduce that a bit.

Finally, you are doing a great service to the OCF community.

Thanks
Venkat

Hi Connie,

Thanks for following up on my post.

[quote=ConnieFL]Venkat..sorry you have to go through all of this. Your signature reads similar to mine, but I didn't have the radiation or chemo.[/quote]

You are very lucky to have escaped these draconian treatments.

[quote=ConnieFL]If you didn't have mets in the lymphnodes what was the reason your Doctor ordered Radiation and Chemo, I don't understand?[/quote]

Yes, that was the initial expectation from me and my family...that post surgery all is well. But sadly my surgeon after discussing in tumor board decided to go for preventive radiation therapy. The reason doctor stated...[quote]You are too young for this disease and being an individual with no bad habits like smoking, alcohol, may be I am genetically predisposed for this. So they want to make sure any microscopic level residue cancer if at all to be cleared.[/quote]All on the basis of probability, but no evidence. This really freaked me out. I didn't have a big say on post surgery treatment and so here I am in the world of radiation.

Thanks
Venkat

Hi Venkat,

Hope you are doing fine and it is unfortunate that you have to be here but this place is weath of information and will lead you to the road of recovery.

For #1: Therabite is expensive so I hope you have read the feedback. Honestly speaking, some regular excercise will help you more.

For #2: Post-radiotherapy, it takes almost an year for saliva to thin out and develop taste-buds. Considering you are from AP, you may not be able to tolerate acidic and spicy stuff for a very long time. Once RT is over, you can probably try Papaya (Juice) to thin out saliva.

For #3: Yes the ulceration will go away, drink lot of water (atleast 4-6 L a day). If it is troubling you, you can try aloclair gel.

You need to regain weight, if you are veggie then it is going to be problem.

Take care and hope to hear from you soon.

[quote=Eshwar N]
For #1: Therabite is expensive so I hope you have read the feedback. Honestly speaking, some regular exercise will help you more.[/quote]
I am actually doing mouth stretches meanwhile, but was feeling a bit scared of it and so had some of my good friends in US order it for me. Let me hope it gets better. Thanks for the info.

[quote=Eshwar N]
For #2: Post-radiotherapy, it takes almost an year for saliva to thin out and develop taste-buds. Considering you are from AP, you may not be able to tolerate acidic and spicy stuff for a very long time. Once RT is over, you can probably try Papaya (Juice) to thin out saliva.[/quote]

Heard about Papaya benefits in thinning. I am going to try this out. Hope it helps. Many thanks reminding this natural way.

[quote=Eshwar N]
For #3: Yes the ulceration will go away, drink lot of water (atleast 4-6 L a day). If it is troubling you, you can try aloclair gel.[/quote]

I am on grinded liquified diet without any spice for the past 3 weeks (since third week of RND). That kind of makes me drink as much water as possible.

[quote=Eshwar N]
You need to regain weight, if you are veggie then it is going to be problem.[/quote]
I am almost 6 kg down in 2 months post surgery, chemo and 20 rad. 2 more weeks of radiation to go.

It is been very nice to see you taking care of your father so diligently. In my case, it is kind of opposite....My mother is taking care of me, almost treating me like a kid...I tend to get irritated at times though I feel very bad after that, but she bears all those. Everyone around me are helping in one way or the other. Thanks to all those folks.

[quote=venkat]I am on grinded liquified diet without any spice for the past 3 weeks (since third week of RND). That kind of makes me drink as much water as possible.[/quote]

Venkat, few food suggestions:

1. Kerala Banana (Nendran), if you have some Mallu friends they can get it for you. You can have your mom boil it for you. Peel, deseed and mash, add some sugar and Ghee. This will make you full.
2. Porridge with Moong Dal Dhuli (2:1) pressure cooked to make loose khichidi
3. Coconut water instead of water.
4. If you eat egg, nothing better than full boiled egg.
5. You can try Nestle Resource and/or Threptin
6. Idli with Fresh Yoghurt

Eat whatever you could.

Venkat, adding my welcome and sorry you're going through all this. I wish you courage and strength.

Many of us myself included survived for months on various commercial brands of liquid nutrition - things like Ensure and Boost and their clones here in the States. Are these readily available to you? I found them indispensable and even now more than 2 years out still use them regularly.

As others have written, the mucositis will eventually go away. It's unpleasant and keeps you awake at night, I know. But hang in there!

Ditto for the dry mouth that inevitably follows. That one generally takes longer to abate, but there are sprays and gels and things to help. Plus just keep water handy at all times.

I was prescribed viscous lidocaine during RT to help numb the sores in my mouth so I could drink. I had a lot of those so it was only marginally successful. Maybe you'll get off with a lighter sentence! Anyway, you might ask your doctor about it.

Try and sleep as much as possible. I could barely do anything but during RT and I didn't have chemo. And keep us posted. We're all in your corner.