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


- Age 34 at DX 4th June 2011, Non-smoker, Non-alcoholic
- SCC on lateral right border of tongue, T1-N0,
- Surgery done to remove tumor on tongue
- RND to remove 9 lymph nodes, no MET(s)
- 3 weekly cycles of 50 mg cisplation chemo
- IMRT RAD 30 exposures, still 11 more to go